I’ve been trying to find a good way to port the content from our old blog over here, and well…there just doesn’t seem to be one. So, I’m just going to paste old blog posts from 2013 here…in reverse order. It’ll be a tedious read, but at least I’ll have them all saved. 🙂
JUNE 30, 2013: THE PARTY CIRCUIT
Well, this week’s theme for the blog could’ve been (1) sick kiddo, (2) ungodly hot weather, or (3) parties. I figured parties was the most upbeat of the three topics, so I went with that. 🙂
Let’s start with the bad and get that out of the way. First, it’s ungodly hot. Tomorrow is supposed to be 103 degrees in Clayton, which is hideous! But it’s supposed to be 112 in Sacramento, so at least we’re not there. (Sorrrrrrrrry, Grandma Diane, Auntie Lynnie, and our friends up there! We will think of you as you broil and we bake!)
Second: illness. Good heavens. Last week was exhausting due to Theo’s UTI, and this week it was Sam’s turn to be sick. He was really fussy and whiny on Tuesday, and he was up most of the night before squalling. Also, he was running a fever–more than his usual 99.5-ish temperature that he tends to run. You guessed it: another ear infection. He just finished a round of antibiotics for an ear infection not even a week ago, so the doctor surmised that it is probably just the same ear infection, and it never cleared after the first round of antibiotics. Sigh… She started Sam on a stronger antibiotic and told me to bring him back if he wasn’t better in two days.
After going up to 102.6 (yikes! I know that’s not overly bad, but it’s the highest temp either of my kids has had, so I didn’t like it!), his fever broke during the night, and he seemed okay on Wednesday. Still fussy, but with just a low fever, so I figured he was on the mend. I cancelled his PT anyway, but I figured all was well.
But then Thursday came, and he was still a little fussy and very tired. Hmmm. I cancelled his OT and figured he just needed more time to recover. After all, his fever was gone, so he must be recovering, right?
Not so much. Thursday night was awful. He was waking up constantly–a one-hour stretch of sleep was the best I got until I remembered a bottle of ear-numbing drops I had from a previous ear infection, and I put them in at 2 a.m. After that, he finally fell asleep. It was so sad–he’d wail, and I’d pick him up, and he’d immediately fall fast asleep on my shoulder…but the minute I’d lay him down, he’d start wailing again. I justknew it was his ears.
So, first thing Friday morning, I called Kaiser and got him anotherappointment. He and I also had chiropractor appointments that morning, which I scheduled because Chris had the day off, so I took him to the appointment as planned, and then we headed to Kaiser afterward for a recheck. (Interestingly, his runny nose that he had woken up with stopped pouring out after the chiropractor adjusted him! It started again on Sunday, but he got two days of relief from the runny nose and congestion after the adjustment, so that was nice.)
The doctor (a different one this time) looked in Sam’s ear, read the previous doc’s notes, and said, “Well, his ear hasn’t improved at all, despite three days of being on this antibiotic. We need to switch antibiotics and try something else.”
So, I picked up a new, yet stronger, antibiotic for him, feeling rather displeased at this turn of events–three different antibiotics to clear an ear infection?? I can’t help but worry that he’s becoming somewhat resistant to antibiotics, after being on them so many times. That scares me, because what if he gets really sick sometime, and the antibiotics don’t work as well as they should because he’s resistant to them? Hmmm, I don’t like it. Plus, they mess with your gut, too, and as someone who suffers from gut issues, I don’t like messing with my son’s gut.
So, I’m going to talk to his primary pediatrician about tubes in his ears the next time I see her. (She’s been on vacation for two weeks.) I hate the idea of putting him under anesthesia, but even more I hate the idea of persistent ear infections–and the associated antibiotics, possible hearing loss (very common in kids with DS), and general discomfort for him. One of the pediatricians I saw this week has a couple of other patients with DS, and she recommended that with his next infection, we look at tubes. She also said that we should redo Sam’s sleep study, because if they do decide to do tubes, they may want to remove his tonsils and adenoids at the same time if he still has obstructive sleep apnea. We’ll have to consider that one carefully–that is a very common surgery for kids with DS, but it does come with some risk of complications, so I’m not sure what we’d decide. But nevertheless, we’ll get the sleep study redone (let me tell you, I can’t wait–that was horridlast time!) next month, and then we’ll at least have updated information to work from.
So I spent a lot of time at Kaiser and the pharmacy this week, much to my chagrin. And the pharmacist who gave me this latest course of antibiotics annoyed me greatly. Evidently this medicine should be taken with “a full glass of water.” Um…my kiddo can’t/won’t drink out of a bottle, a sippy cup, a straw, or a regular cup. The only way he gets liquid is by nursing. So I told the pharmacist this and said, “So I assume I should just nurse him after I give him a dose?” She stared at me and said, “He really needs a glass of liquid. It doesn’t have to be water.”
I repeated that he won’t drink anything out of a bottle or cup and said, “So should I just nurse him after I give him this?”
“It’s really important that you give this with liquid,” she repeated.
In exasperation, I replied, “I can’t force water down the throat of a baby who won’t drink from a bottle or cup of any kind. Should I just nurse him after I give him this?”
She replied brightly, “Oh, it doesn’t have to be water! You could use milk in a cup instead!”
I gave up at that point. Clearly she wasn’t getting the concept that he cannot drink from a cup. So we spoon-feed him as much liquid as we can (usually a couple teaspoons) and I nurse him, and we figure that’ll have to be good enough. There’s no way to force-feed a child liquid, despite what the pharmacist apparently thinks!
So now we’re working through our third course of antibiotics and hoping for the best. Sam is relatively cheery as of today, but he has a nasty cough and a runny nose, so…we’ll see. This is such a stubborn infection that I’m just crossing my fingers that it doesn’t turn into bronchitis or pneumonia or something. As of Friday his lungs were still clear, so that’s good….
Friday was the day to make the rounds at Kaiser, as we also had his speech-therapy evaluation in Oakland that day. Given that Sam was sick, I debated rescheduling the appointment, but Chris had taken the day off (so I didn’t have to take Theo with me), and those appointments take forever to book, so I just kept it and hoped for the best. As it turns out, Sam managed about 45 good minutes with the speech therapist, so she got the info she needed for her evaluation. She assessed him at a six-month level for speech…which is about what I had guessed. She said he’s very strong in being social and expressive in terms of facial expressions and such, but he’s way behind on his babbling. She kept repeating, “I wish he was babbling more. I wish he was babbling more.” Yeah, her and me both… Ah well.
So, I’m hoping to get a denial for speech therapy from Kaiser so that we can get therapy through the Regional Center, but we’ll see. The SLP was going to recommend a denial because she knows how the system works–there aren’t very many therapists available, and if Kaiser approves us, we could end up driving very far and having a limited number of appointment choices. (Plus, we have to pay a co-pay each week.) If Kaiser denies us, Regional Center will send someone to our home at no charge to us. So, as you can imagine, we’d love for Regional Center to provide his service. Fingers crossed…
Speaking of co-pays, I realized this week why Chris and I are forever living paycheck-to-paycheck, despite him getting a much better job when he started at Genentech. We keep wondering why we nevermanage to get ahead at all, given that we don’t spend a lot. Most of our weekend activities are free (except gas), we rarely eat out (and if we do it’s very inexpensive, since there’s very little I can eat), and I buy anything we need for the kids at either Target or a secondhand store. So what gives? I realized it’s co-pays that are killing us. This week alone, we’re at $350 in out-of-pocket medical expenses. That’s one week! Granted, that’s because I had to pay for Theo’s out-of-pocket OT for the month of June, which was $220 (he goes twice a month), but still–that’s $130 just in co-pays. In one week! That’s hideous. Though it makes me feel a little better, like we’re not lousy money-managers, because there’s really no way around those co-pays, and it makes sense that it would be straining our budget when it’s so much in just one week. Ah well…
But anyway, off the Kaiser chat and on to the fun stuff: parties! On Saturday, Theo had two birthday parties! I normally wouldn’t try two in one day, but one was for his buddy Tico, and we didn’t want to miss that, and the second was for a classmate of his, and I knew his best friend Gavin would be there, so I didn’t want him to miss a chance to see his pal. As it turned out, it went well. Tico’s party was in the morning at Chuck E. Cheese, before it got crowded, and Theo had a good time playing the games there. We had never taken him, so it was all new to him. He’s really pretty awful at video games, since he doesn’t play them very often, but he had fun anyway.
Then we had a three-hour break between parties, which we used to get lunch for me and Chris (In-n-Out Burger–cheap, and it doesn’t make me sick. Win!) and go see Auntie Jeanette’s new house in Livermore. Then we headed back up to Concord for Party #2, which was held at The Jungle (similar to Chuck E. Cheese, but much bigger and more chaotic). Theo did very well, all things considered. I think Chris and I were more worn out by the end than he was!
Sunday, the party circuit continued with a get-together at Auntie Lisa’s parents’ house in Santa Cruz. Lisa, Chris, and Cason were visiting, so they hosted a little get-together for people they know in the area. Theo loved seeing his buddy Cason, and there were several other similar-aged kiddos there too. Sam was pretty tired, as it was nap time, but he was congenial and hung out without complaint. Afterward, we headed to a park in Santa Cruz to see Bill (Chris’s cousin), Sarah, and Liam and Logan. We played for a couple of hours there–Theo and Liam got along like peas and carrots! Sam was tired and a little grumpy, but he went along with it anyway. Luckily, it was much cooler there, so it was nice to be out and enjoying a gorgeous day.
And that wrapped up our week! Most of my pictures this week are quick iPhone snaps, but to make up for the lack of good pictures, I have a treat–a new Sam video on the Still More Videos page. It’s actually just a compilation of some recent footage I’ve taken of him, but I thought the grandparents in particular might enjoy it, since they haven’t seen Sam in a while. I didn’t have any good Theo footage to throw in, unfortunately. He’s at the age where if he sees the camera on him, he tends to either clam up or ham it up, so it’s harder to get good footage of him. Next time!
For now, stay cool and enjoy the pictures and the new video!
JUNE 23, 2013: THE LONGEST WEEK
Years ago, when Theo was about two, we had what Chris and I jokingly refer to as “the longest day.” Theo had some sort of nasty stomach bug, and in the wee hours of the next morning, I woke up with it too, and I weakly told Chris, “You need to take the day off work. I can’t care for Theo like this.” Which would’ve been fine, except within an hour, Chris, too, was puking. So the three of us spent the day lying on the couch, trying not to move because if we did, our stomachs would let go. It wasthe longest day ever, and the only thing that made it bearable (besides reruns of Everybody Loves Raymond) was that Theo felt lousy enough that he, too, was relatively docile. If he had been running at full speed, I’m pretty sure Chris and I would’ve died. 😉
Anyway, this week was the longest week. The UTI that Theo came down with last Sunday lasted forever! I thought the antibiotics would knock it out within about 24 hours (and in fact that’s what the pediatrician at Kaiser told me), but no. It took close to 96 hours for the pain to go away. And in that time, I had to help Theo every time he went to the bathroom. The poor guy was in such agony that he would shake and scream. I had him sit on the toilet so that I could kneel in front of him and bear-hug him, figuring that allowing him to squeeze me as hard as he could might help take his mind off the pain. But he was still in so much pain that he would scream and thrash, in the process spraying pee all over the bathroom, all over me, and covering me with bruises from where he inadvertently kicked me. I tried to get him to urinate in a warm bath, as that’s one way I know of to lessen the pain, but he wouldn’t do it–he kept insisting that he had to pee in the potty. I think he may have tried it once (after some extra coaching from Grandma Diane over the phone), but only once. And because a UTI means he was peeing more than usual and not emptying his bladder when he went, you can imagine what a long several days it was! Sometimes we’d have to repeat the scenario every 15 minutes or so. It was awful–for both of us.
Add to that the fact that Chris had to work long hours this week, so I was on my own a lot. Ugh. About the only good thing I can say is that Sam was happy and content for most of this week, so that helped.
The other piece of the equation is that other than peeing, Theo felt fine. So he didn’t want to be cooped up in the house (and I didn’t particularly want to be cooped up with a bored kid), and thus we went out and about a few times. Which meant that I had to deal with this in public bathrooms at parks–which are never up to my cleanliness standards. (I am a reformed germaphobe, but public bathrooms still disgust me–especially with a five-year-old who touches everything in them. He’s obsessed with looking at the brand of toilet, so he’s forever putting his hands on the seat to try to find the brand name. Gross! Seriously, I was traumatized….)
Anyway, it made for a very, very long week. He now has just a few more days of antibiotics and the pain is gone, though he’s still urinating more frequently than usual. I hope that doesn’t mean the stubborn infection will come back. Ugh. He starts summer preschool tomorrow, and there’s no way he could go if it came back. And when Theo doesn’t get to go to school, he gets downright ornery. Good times…
Anyway! Aside from peeing, what did we do with our week off from school? Well, some fun stuff. We played in public bathrooms! Just kidding. (Sort of…) On Monday, we met Theo’s best friend, Gavin, at the park for a picnic lunch and play date. What fun! The more I get to know Gavin, the more I can see why they get along. Gavin and Theo are like two peas in a pod in many ways–both very sophisticated with language and interested in a lot of things, but both struggle with some of the motor skills. Gavin has a very rich imagination, and he and Theo do a lot of imaginative play together, which is really neat to see. Only thing is, they both have different ideas of what to play: “This is a supermarket! No it’s not, it’s a tollbooth! No, it’s a supermarket! A tollbooth!” 🙂
We had a second play date with Gavin on Wednesday, when we met up at the Lindsay Wildlife Museum. The boys looked at the animals a bit, and at Gavin’s mom’s suggestion, we tried the hospital show. Lindsay is a working wildlife hospital, and every day they have presentations where you can watch a procedure being done in the hospital. We’ve never attended a show because Theo typically can’t/won’t sit through passive activities like that. However, he is very influenced by peers in terms of wanting to do what they’re doing, so the fact that Gavin was interested in the show gave me hope. And indeed, it went very well. Gavin and Theo took a seat on the bleachers in an area where Courtney and I couldn’t fit, so we sat off to the side and just kept an eye on them. And they did very well–we had to catch their eyes a few times and shush them when the presenter was talking, but they made it through. Perhaps not surprisingly, their favorite part of the presentation was when the snake (who had been caught in some garden netting and was having his wounds irrigated) pooped on the exam table. There’s a video camera broadcasting the procedure on a big screen, so the boys got a close-up view of a snake pooping. Are we surprised that this was the highlight for two five-year-old boys?!
Sam was actually quite amusing during the show. I had him on the floor next to me, and he wasn’t interested in the show. (I thought the big screen might catch his interest–shame on me, letting him watch a “TV show!”–but he wasn’t interested.) Instead, he decided he needed to indulge his foot fetish and crawl around touching people’s feet. Every so often, he would let out a growl or yell to try to get someone’s attention. I tried to keep him quiet, but you know…he’s 16 months old. It’s a difficult thing. 🙂 Anyway, at the end of the show, a man (whose feet Sam had been particularly enamored of) came up to me and said, “Your baby is awesome!” I couldn’t agree more…. (By the way, those who know me well will find it amusing that Sam is obsessed with feet, since I’m totally grossed out by feet!)
On Tuesday, we were supposed to go up to Sacramento to see my friend Janeane and her kiddos, including her seven-month-old baby who I have yet to meet. But Theo was still really struggling with the UTI, and I didn’t feel like attempting two hours on the road (each way) with him, knowing that I’d probably have to stop multiple times and attempt to forcibly hold him in public bathrooms. What would I do with Sam–set him on the floor in there? Unthinkable, given my opinion of public bathrooms. So, I told Janeane we’d have to take a raincheck, but Theo was really disappointed not to see his friends Emma and Jamie. So, I made it up to him by driving the boys to Genentech to meet Chris for lunch. This was a good idea in theory, given that it usually only takes a little over an hour to drive there at lunchtime. But for whatever reason, traffic was terrible. We made it all the way there without Theo having to stop to pee, but traffic was even worse on the way home, and it took us nearly two hours! Chris was in the car with us at that point–he hitched a ride home with us and planned to finish his workday at home. But oh my goodness, it was kind of a nightmare. We were stuck in traffic with no place to stop for Theo, and he had to pee so badly! And by the time we got off the bridge, I needed him to hold his urine because we were going to stop at Kaiser for him to give a follow-up urine sample, and I wanted to make sure he didn’t empty his bladder beforehand. So the poor kid wailed and fussed for about the last 20 minutes of the drive, because I swear we hit every possible red light. I was so frustrated with traffic by the time we got to Kaiser! On the plus side, Theo had to go so badly that he was immediately able to produce a hefty sample for the lab. Silver lining, I suppose…
Thankfully, by Thursday the pain was subsiding, and the frequency was decreasing. We went to a free trial class for Theo at Pediatric Motor Playground, and he made it through the whole hour-long class without having to go. He had a good time, and I’ve enrolled him in the weekly class. His preschool teacher suggested it–it’s an OT center where therapists work with small groups of children in play activities that actually work on motor skills. That is, kids think they’re fun play classes, and really they’re working on motor skills. At school, they’ve found that Theo is much more receptive to trying things if there’s another child involved–his competitive streak comes out, and he wants to try anything he sees someone else doing. So in these small classes of 3-4 kids, he gets to work on gross- and fine-motor skills in a small group…and he has fun while doing it. I think it’ll be a fun activity for him to look forward to each week over the summer, and as an added bonus he’ll get some extra OT/PT work.
On Friday morning, Theo had OT and Sam had a Baby Steps class right after. I wasn’t sure whether I was going to be brave enough to attempt Baby Steps with Theo in tow, as his behavior has been rather poor for the past couple of months, but I’m glad I did it. Theo can behave really well at times, and luckily for me, Baby Steps was one of those times. (It may have something to do with the fact that I bribed him with the promise of french fries if he behaved while Sam and I were in class, though bribery doesn’t always work, so who knows?) Theo had to stay in the lobby at Down Syndrome Connection while Sam and I were in class, and I wasn’t sure how it would go. They have lots of toys for kids out there, and there are a couple adults who keep half an eye on the kids while they’re working, but you know…it’s the kind of thing that could go fine or could be a dismal failure. (Technically, he could’ve come into class with me, but I knew he’d be interrupting the whole time, and I wouldn’t get anything out of the class–plus, it would be disruptive to the other people in there.) As it turned out, he was fantastic. He talked to the people working in the office, and apparently he was their head greeter for anyone who walked in the door–evidently he sat and talked to some older woman (whose son has DS, I believe) for quite a while, and she was utterly charmed by him. In fact, he was so good that all of the people working in there complimented me on how well-behaved he was and what a delight. I was a proud mama! And yes, he earned his french fries!
The rest of the story is that all of that good behavior took a lot of effort for him, and he was pretty poorly behaved for most of the rest of the day. But hey–at least I got to enjoy Baby Steps. And I really needed it on Friday. I needed the therapy that those cute little babies give me! Sam is now interacting with the other babies, and I just love it! Warms my heart…
Saturday was a hot day, so we headed to our favorite park on the other side of the Bay and had a picnic and played. It was Sam’s first time on the playground itself, and it was fun to see him! He mostly just sits in one place, but he did explore a bit, and he seemed to enjoy himself. He attracted the attention of a five-year-old girl, who took quite a liking to him and sat with him for a good 10 minutes before running off. He’s a ladies man already–gets that from his father. 😉
Sunday was drastically cooler, so we stuck on this side of the Bay. We went to the farmers’ market and then had some gluten-free (and cheese-free for Theo) pizza and stopped at another park. Low-key weekend, really, but that’s what we needed–Theo’s having a rough time of it lately, and we’re trying to keep things as low-key as possible. And to be honest, I needed low-key. It has been a very, very long 10 weeks with Theo. Ever since his birthday, he has been struggling, and it’s been very hard. I’ll spare you the details, but it’s gotten to the point that I’ve actually put in for a consult with a behavior specialist through Kaiser. Because honestly, I’ve tried everything to help him, and things are still very, very rough. He has good days, for sure–but many, many rough days. It’s exhausting, and I worry about him long-term. His self-esteem is suffering because he’s constantly getting into hot water, and thus I’m constantly having to work with him on discipline–and he has a tendency to beat himself up over it. And I see a very self-destructive side to him, where he purposely does things to sabotage himself. I don’t think it’s a healthy pattern for a five-year-old, and I need to figure out how to help him.
And it hurts me–kills me, really–to see him earning this sort of reputation as a troublemaker. Because my boy likes to stir the pot–I know this, and it’s just who he is. But there’s a difference between making mischief and being labeled as a “bad” kid, and I feel like he’s starting to get the latter designation. He’s gotten blamed for things that he didn’t even do (at least, from what I saw, he didn’t do it–it’s a he-said/she-said situation), and that really bothers me. Because it’s not that he’s not capable of doing things–he’s as capable of negative behavior as any kid. But he shouldn’t be blamed for something he didn’t do–it’s just not fair. And yet he is blamed because people expect that he did it. That really, really bothers me. It is just simply not fair to Theo. Let him get in trouble for something he did–sure. But don’t judge him for something that he didn’t necessarily do.
So honestly, I’ve been feeling sad about the fact that I have tried so, sohard to help him, and he’s still struggling. I have put so much effort into trying to work out this pattern of negative behavior that we’ve seen over the past 2.5 months. And nothing has really helped. If you only knew how hard it was for me to admit, “Okay, I’m out of parenting ideas. I will call the behavioral department, as Kaiser recommended a year ago. Because a year ago we were doing okay, but now…now we’re sinking. And we need some help.” And if you knew how hard it was for me to talk to the “gatekeeper” social worker that one must go through at Kaiser to even get a phone appointment with the behaviorist.
But I did it, and I soldiered on, because that’s what I do. And really, I’m pretty good at it. But then I got dealt a blow in the form of judgment, and it hurt pretty badly–kicked while I was down, you know? So I felt pretty lousy this weekend. And I needed the weekend to lick my wounds.
Interestingly, in licking my wounds, I realized one reason why I’m so drawn to the special-needs community: a lack of judgment. When parenting in general, it seems that judgment is everywhere–everyone has an opinion on how you should raise your kid and what you’re doing to screw him up. But when you step into the special-needs community, that largely vanishes. There’s much more a vibe of “Oh, we’re all in a rough situation to some extent, and we’re all doing the best we can.” Live and let live–I like that philosophy. It suits me.
So, I decided to take a step into the autism community and join a local support network. They do some family events, but they also happen to have a monthly support group. And I’m going to go, because I need a place where I can say, “I am trying to help my son and having a rough time,” and people won’t feel compelled to tell me why he’s screwed up—they’ll just listen and say, “I’ve been there, sister. It gets better, and it gets worse, and then it gets better again.”
Because that’s what we need to know–that it’s going to be up and down, but that it’ll come back up again. We’ll work through this with him, and we’ll all come out the other side. We will. I may have a few battle scars along the way, but they’ll heal, and I’ll move on.
JUNE 16, 2013: LIGHTS, CAMERA, ACTION!
Happy Father’s Day, all! We’re at the tail end of it, anyway…. I’ll talk more about Father’s Day in a bit, but first let me address the title of this week’s blog: “Lights, Camera, Action!” As I was up in the middle of the night feeding Sam a couple of nights ago, I noticed a new message for me from a high-school acquaintance who recently friended me on Facebook. She wrote, “Did I just see your son Sam on a Gymboree commercial??” I did a quick search on the Internet and figured out that she was right–the Gymboree commercial he shot about a month ago is now finished and airing on TV! I was really surprised that she recognized Sam, since we haven’t been Facebook friends for very long (and I haven’t seen her in 20+ years), but she did. Anyway, I was able to find the commercial on YouTube, and I’m going to post it on the Still More Videos page for your viewing pleasure! He is in two different shots in the commercial, the second one being the cutest. 🙂
Theo wrapped up preschool on Thursday–wah, no more Teacher Amanda! How lucky we were to have her for 13 months, though. She has made a huge positive impact on Theo’s life, and I feel so lucky that he was put in her class!
I was glad to have Chris working at home on Thursday, because it was kind of a tough day for Theo (being his last day with Amanda), and as it turns out, I had to take Luna to the vet. She’s had two pee accidents in the house, and the only time she has ever done that is when she’s had a bladder infection or bladder stones, so I knew I had to take her in. And taking Theo and Sam to the vet with me was just a very daunting prospect, given the fact that Theo has been kind of…volatile…lately. So I was happy to be able to leave Theo at home with Chris while taking just Sam and Luna. Sam, of course, charmed everyone in the vet’s office…as did Luna, my platinum-and-diamond-plated pug, who just cost us another $600 (to find out that she’s just old and incontinent–which is certainly better than sick). That pug is well over the $5,000 mark by this point, between several surgeries and other bladder issues. She’s lucky she’s such a dear, sweet animal!! Anyway, no bladder stones (we don’t think) and probably no infection this time–just age-related incontinence. Poor pug….
Speaking of ailments, I had a feeling on Monday that Sam’s crankiness was more than just teething. Following my mommy intuition, I took him in for a quick ear check at Kaiser, and what do you know? Another ear infection. (Oddly enough, Luna has an ear infection, too. Go figure…) So poor Sam is on antibiotics again…as is Luna. And Theo, for that matter. But I’ll get to him in a moment. We’re a sick household this week, apparently.
Because Theo wrapped up school on Thursday, we had Friday free. So I decided to take the boys up to Elk Grove to see my mom. Theo’s been a bit of a handful lately (okay, that’s an understatement…), but he managed to hold it together reasonably well for our visit, and we had a nice day. We even managed lunch at a casual Mexican restaurant and sorbet at the local Nugget (Chris’s favorite grocery store of all time). And we played at the park for a bit early in the day, before it got too hot!
The weekend was a mixed bag for us. To be completely honest, Saturday kind of stunk. But Sunday was quite nice overall, so that made up for it. Why did Saturday stink? A certain child was cranky andcombative all day, so what should’ve been a nice morning at the zoo turned out to be rather tiresome. So tiresome that I finally announced, “We’re done”…and we left. And went home and made jam out of 10 pounds of plums, which we needed to do anyway. And someone, unfortunately, ended up spending a fair bit of time in his room, attempting to settle down.
But Sunday was a new day, and oddly enough, it was much, much better. I say “oddly” because poor Theo was not feeling well on Sunday–and yet, he was much more cooperative and pleasant. If he’s run down and tired, he’s typically quite cooperative, but that wasn’t the case on Sunday–he had a urinary tract infection, so he was full of energy and such, but just in a lot of pain. So you’d think that would’ve made his mood awful, but he was actually in a reasonably good mood, all things considered. Weird…
Anyway, backing up…Theo woke up Sunday morning and was crying a bit about it hurting to go to the bathroom. I thought maybe it just burned a bit because he had held it all night (we’ve been trying to work on nighttime potty training…a bit…), so I told him to try again in a few minutes and let me know if it still hurt. Um…yeah. He screamed and cried. And I found blood in his Pull-Up. So yeah…I was sure it was a bladder infection.
It being Father’s Day, we had hoped to spend the day at the beach in Half Moon Bay, but obviously we needed to attend to Theo. I talked to a pediatrician on the phone, and she told me to take him into the lab for a urine test, and they’d call in a prescription depending on the results. So we did, and amazingly enough, he was able to produce a tiny bit of pee in a cup–enough for a sample. I was so relieved, as I was terrified that they’d have to catheterize him if he couldn’t manage to pee in a cup. But he did it–brave boy!
So at that point, since we had nothing to do but wait for results, we decided to head to Half Moon Bay after all, thinking a day at the beach would take his mind off of it. And to be honest, it probably did. We went to a farmer’s market, had a little lunch from a local supermarket, and then went to the beach and tried to fly a kite. And really, it was lovely–if punctuated by frequent trips to the bathroom that were rather traumatic. (For the funny account of Theo’s discussions of his UTI, click here. It was very hard not to snicker at some of this!) The poor kid was in agonyevery time he had to pee, but did fine in between trips.
It was rather stressful taking him to the bathroom, though. The pediatrician had recommended that we put Vaseline on him to help keep the burning not quite so bad when he peed, so every time he had to go, we had to hustle to a public bathroom, Vaseline in hand, and help him in there. And undoubtedly people outside could hear him screaming while he tried to go…and probably assumed we were doing something awful to the poor kid. Sigh… And, he would sit down on the toilet to try to go, but the minute he would start to pee, he’d freak out, leap off the toilet, and spray pee all over the bathroom. So we cleaned up our share of pee off the public bathroom floor today. And if you know me at all, you know how vehemently I hate public bathrooms and find them utterly disgusting. So yeah…it was pretty much my worst nightmare. The things we do for our kids, right?!
And because being in agony while peeing isn’t enough, we picked up his prescription on the way home and gave him the first dose with dinner…and he promptly got hives. So now I have to get the prescription changed in the morning…which will delay his second dose…which means he’ll be in pain longer. Ugh. No fun.
But despite all that, I think we all had a really nice Father’s Day. Of course, it would’ve been better without the pain for Theo, but all things considered, it was nice. And oddly, better than Saturday…for at least three out of the four of us.
It’s been a while since I posted any real musings over heavy topics, and I’ve been thinking about something a lot lately, so I’m going to muse. Feel free to skip the musing if you so desire, though I’ll tell you right now that it’s a largely positive musing. I have another one brewing in my head that’s too controversial for me to post until I’ve fully thought it out, but for now, here’s the latest big topic that’s rattling around my head: Down syndrome, how I introduce it, and how people react.
When I first had Sam, I had this weird compulsion to tell everyone who commented on him that he has Down syndrome. I don’t know why–I wasn’t ashamed or angling for attention or anything like that. It was more that I was still in so much shock about it that I had to keep repeating it as I worked to come to terms with it in my mind. So, I’d meet people in the store or whatever, and they’d comment on how cute Sam was, and I’d exchange the usual pleasantries and somehow slip in that he has DS. Not in a negative way and not in a positive way–just matter-of-fact. For some reason, I was compelled to throw that information out there.
But it wasn’t too long before I stopped telling people. And again, it wasn’t because I was ashamed in any way, nor was it because I was trying to hide it. I just no longer had the need to tell people, and it didn’t really come up in conversation naturally. If it came up, I was open about it, but I didn’t go out of my way to say anything.
Nowadays, I take it on a case-by-case basis. On one hand, most of the time I feel like the best way I can show people Sam’s absolute fabulousness is by saying nothing at all: If they can tell Sam has DS and they see that I make absolutely no reference to it, then they realize that it’s because it’s inconsequential–just a small part of him. I envision people as thinking, “Hey, I always thought DS was a scary thing, but this mother is just taking it in stride, enjoying her baby like any mother does. It must not be scary after all!” But on the other hand, there are times when I feel like I can spread awareness by sharing that Sam has DS and educating people where needed, so sometimes I do bring it up.
And the reactions are interesting. I’ve never had anyone be openly hostile, thank god. I’m sure that’s coming someday, but so far I’ve been lucky. But I’ve gotten the rest of the range of reactions. There are people who are shocked and say, “Oh! I had no idea! Well, but he’s very cute anyway, though!” Which is actually a rather offensive thing to say, if you think about it, but I don’t really take offense because I know that most likely, the person just blurted that out and then mentally kicked herself and said, “Good grief, what did I just say: he’s really cute anyway?! What was I thinking?” So I don’t need to get on anyone or get offended–chances are, the person probably feels bad enough on her own.
In the airport last weekend, I got a strange response–and I didn’t take offense, really, but I kind of thought, “Um, lady–consider your audience here! I don’t need to hear this story.” In this particular case, the woman behind me in line noticed Sam sign “more” and said, “Oh–your baby signs. Is there a reason why you taught him to?” A bit surprised by the question (because teaching babies sign language is pretty common these days regardless of the kid), I replied, “Oh…well, he has Down syndrome and probably won’t be able to talk until later, and I want him to have a way to communicate.” She immediately said, “Yes, I can tell. I’m in the healthcare profession,” so I knew her question about sign language was her way of jumping in and trying to see whether she was right about her guess. Which is fine, but then she launched into a story about her friend who had a baby with DS some 25 years ago and swore she’d never keep a baby with DS–“because you put them in institutions then, you know”–but ended up keeping it anyway, and “you just never know what you’ll do, I guess.” And it was an okay story, I suppose, but I didn’t see the point in her sharing it with me. I mean, really–if you meet someone who has a kid with, say, depression, do you say, “Hey, they used to institutionalize people with that!” I just found it odd.
And like pretty much every other parent of a child with DS (or probably any special need), I’ve often heard the “God gives special babies to special parents” line. And I know that some people find that sentiment really irritating (“I’m just a normal parent doing my best–I’m nothing special!”), it doesn’t bother me. In fact, I kind of like the idea that I was chosen to be Sam’s mama, because that’s a role that I absolutely cherish. I am just a normal mama doing my best, but I’m special because I’m Sam’s mom. And Theo’s mom. If you want to get into divine intervention, He gave them both to me, and that makes me special because they’re both special.
And I’ve heard the stereotypes, too, like most parents of kids with DS: “Oh, they’re so loving! They’re always so happy!” And I know those stereotypes anger some people within the DS community, because they feel like it doesn’t support the fact that, like everyone else, people with DS are complex individuals with the same range of emotions as anyone else. But again, this stereotype doesn’t bother me. I’m well aware that it’s not entirely true, and I’ll certainly tell people that Sam isn’t alwayshappy…but the truth is, he is a pretty happy, loving guy in general. And hey, if that’s the worst sweeping generalization anyone ever makes about my kid, then I can live with that. There are worse things than being called happy and loving, right?
And I’ve gotten the pity–the people who immediately assume my life must be really hard because I have a child with special needs, which surely is a tragedy. And again, this doesn’t make me angry or anything, but it’s just silly. Because anyone who has met Sam for even a brief period knows that his life is anything but a tragedy. On the contrary, it has brought incredible light to all of our lives, and he really seems to light up the lives of everyone he meets. He just has that way about him–a beautiful little soul that touches everyone who meets him. I mean, how can you resist that smile, right?!
So I’ve gotten it all–almost. The only thing I’ve missed is outright hostility, thank goodness. But I recently got my favorite response of all, from the woman who manages the Starbucks kiosk at our grocery store. I stop there a couple of times a week for a drink (yes, yes, I’m addicted…), and she loves Sam. She has a daughter who is about two years old, I think, so she always talks to me about Sam. And Sam loves her–he flirts with her like crazy. One day, she asked me whether he was walking yet, and because I had talked to her enough times to feel like we were on friendly terms, instead of my usual cheery, “Not yet, but he’ll get there!” I was honest and said, “No, it’ll be a while. He has Down syndrome, so he has developmental delays. But he recently started crawling, and we’re really excited about that!” She looked at me with the most honest expression, completely free of pity or astonishment or anything else I’ve seen, and just asked very genuinely and softly: “Is that hard? Having a child with Down syndrome?” And I loved that she asked because of how she did it–perfectly genuinely and calmly, as I said, with no trace of pity. I could tell she was just genuinely curious to learn more. So I said, “Oh! Well, no, not really. The medical stuff is hard–there’s a lot of weird little things you have to worry about, and for me that’s the hardest part. But in terms of everything else, no. He just does things slower, but he gets there. He’s really just like any other baby–just has to work harder to learn things.” And she smiled and said, “Well, he is just a doll. I just love him.” And that was it–she has never since treated him any differently. She loved him before she knew, and she still loves him–not more, not less, but just the same. And really, that means so much to me. Because as parents, that’s what we all want, right? People to love our kids just for who they are–not because of some part of them, but just as a whole.
Anyway, time for me to sign off for the night. Tomorrow is Chris’s and my six-year anniversary, and we both have busy work days, so we’re sort of celebrating today instead. And so, I shall go eat dinner with my sweet husband. Good night, all!
JUNE 10, 2013: GRADUATIONS AND TRAVELS!
Really, the biggest news of the week is that Theo gradated from preschool! He still attends this week and for a one-month summer session, but his graduation ceremony was Wednesday. And yes, I made it through without crying–barely! It really was a neat little ceremony. Theo and his three classmates sat in the front of the room and performed some songs for us, and then Teacher Amanda read a little blurb she had written about each student, focusing on where she saw them in the future. One little boy was a future motocross champion, for example. And Theo is her little future elevator repairman by day, rockstar by night! Then each child got his diploma, and then we had a little party with yummy food. I’m feeling rather amazed and nostalgic about the fact that my little boy is now a kindergartner!
I was trying to put together a video from the footage I took at the ceremony, but for some reason I’m having technical difficulty. Sigh…
Another fun part of the week was Sam’s play date with his little buddy, Caj. I met Caj’s mom, Jisun, through one of the Down syndrome forums I subscribe to; they happen to live in Oakland, so they’re relatively close to us. She mentioned that she’d be happy to take some of our apricot bounty off our hands, so I invited her up on Tuesday with the promise of fresh ‘cots. We had a really nice visit, and her two-year-old daughter kept things amusing and lively! Caj is only about seven months old, so too young to really “play,” but you’ll see in this week’s album that he and Sam had a keen interest in each other when they were on the floor. So cute!
We all had exciting weekends, though in different ways. Sam and I left for Seattle on Friday morning, and Chris and Theo had a boys’ weekend here. Let me fill you in on the boys first, and then I’ll get to Sam’s and my trip. On Friday, after Theo got home from school, he and Chris took the city bus down to the Concord BART station. From there, they hopped on the BART train for two stops, to the Walnut Creek station, where I had parked Chris’s car earlier that day. (The city bus doesn’t go straight to the WC station, which is why they took it to Concord and rode BART two stops. Plus, Theo ADORES BART, so he was excited. And he loooooved riding the city bus!) They picked up the car and went to McDonald’s for a treat for dinner…with a stop at Barnes & Noble after. B&N has an elevator and escalator, so you can imagine that Theo was thrilled. 🙂
On Saturday, they went to Theo’s last soccer meeting for a few weeks. From there, they headed over to AT&T Park (where the SF Giants play baseball) for Genentech’s annual Genentech Gives Back benefit concert. It’s a huge family event, and unfortunately it fell on the ONE weekend I was out of town this year! But Chris and Theo went and had a great time. There are kids’ activities, all the free food and booze you want (no worries–Chris stuck to Diet Coke!), and three major performers doing concerts. Chris and Theo missed the first concert, but they didn’t mind–it was Demi Lovato, and we’re not fans. They also skipped the third concert–Pitbull–because Theo was worn out and Chris couldn’t care less about seeing Pitbull. They did watch the second concert–Train–and Chris said it was really good. Theo likes a couple of Train songs, too, so it was neat for him.
On Sunday, they spent the day at Grandma Kathy and Papa’s house. Theo went swimming and enjoyed the day with his grandparents–a little music, a little TV, and a lot of talking Grandma Kathy’s ear off, I’m sure! 🙂 They had a turkey dinner before heading out to Oakland to pick Sam and me up at the airport. Theo was so excited to get to go to the airport–he talked my ear off most of the way home, and he insisted on dragging my suitcase for me. It was very sweet.
Now on to the Seattle adventures! Sam and I took BART to the airport, which was…interesting. It’s very convenient, but there certainly is some good people-watching on there! Sam was a mellow companion for the hour it took to get to the airport, and he fell asleep in my Ergo carrier right before we arrived…and then snoozed for an hour while I walked through the airport, got a snack, etc.
As usual, when he awoke he started charming the pants off of people–in particular a woman named Regina who has four older children. Regina said she’d love to sit by us, and given that most people avoid sitting by babies like the plague, I figured I’d better take her up on it. So we sat together and let Sam play on the seat between us, and between the two of us we kept him entertained for the whole flight!
Auntie Lisa picked us up at the airport after having a hectic morning–it seems Cason accidentally knocked a shelf onto Uncle Chris’s head that morning, and Uncle Chris had to spend the morning in the ER, getting three staples put into his head! Ouch…
We picked up Cason at daycare, stopped at Whole Foods so I could get some baby food for Sam and some snacks for me, and then headed to Lisa’s house. After letting the kiddos play for a bit (they were so cute together–Cason was so gentle with Sam, and Sam thought he was just the coolest thing!), we went out to dinner at a place that has lots of menu items designed for people with food intolerances. It was a gluten-free heaven!! I had a delicious falafel and rice bowl and a raw vegan gluten-free fudge brownie. Sounds horrid, right? Not at all! It was made with cashew butter or something, I think, and wonderfully dark, rich chocolate. It tasted like a thick chocolate pudding on a nutty crust. Delicious!! My Aunt Sally, a fellow chocoholic, would’ve approved. 🙂
On Saturday, we got some picnic items from another gluten-free heaven and went to Gasworks Park, which has huge grassy areas and wonderful views of downtown Seattle and the seaplanes and boats. It was overcast but pleasant, and we spent quite a while at the park, eating and enjoying the views while Cason played. Sam napped in the Ergo the whole time, of course. 😉 This time, I ate a kale salad and a gluten-free banana chocolate-chip muffin. Delicious!!
After Gasworks, we went back home to let Cason get a nap, and Lisa, Sam, and I walked to University Village, to have a nice stroll and get a coffee (me) and a smoothie (Lisa). Sam was kind of cranky, and getting out for a walk did him good. When we got back, Cason woke up and we went to another park while Chris went to Whole Foods to pick up stuff for dinner. Green Lake Park is so beautiful, and we had wonderful sun for our visit! It was full of people enjoying the great weather, and we took a quick walk before heading home, where Chris had prepared a yummy dinner of grilled fish, grilled corn, and kale salad (I’m obsessed!). Ha ha, I’m talking all about the food, aren’t I? Well, Seattle has great food! I have to talk about it!
On Sunday, Sam was up at 5 a.m., and I didn’t want him to wake up everyone else. I kept him quiet for a while by playing with him on the bed, but he got bored. So I pulled out my phone and brought up someBaby Signing Time videos on YouTube. He loved them! He watchesBaby Signing Time at home sometimes, so he recognized some of the characters and clips. In Baby Signing Time, they set pretty much everything to original music, and the songs are really catchy. Turns out Sam thought so, too–when I had one on (the pizza song, the exact title of which I can’t remember), he started dancing! Not just bouncing up and down, but really dancing! He got a huge grin on his face, started squealing happily, and swinging his arms back and forth while bouncing on his bottom. He was really dancing! It was awesome. 🙂
But by 6 a.m., he had lost interest, so I grabbed Cason’s stroller, put Sam in it, and we walked back down to University Village for an early Sunday morning coffee date. We got back home after 7, and by then the rest of the house was up and moving around.
We went to another yummy restaurant for breakfast (I had delicious fried potatoes), and Sam barely managed to stay awake. So as we headed out to Golden Gardens Beach, it didn’t surprise any of us that he fell asleep in the car. Although I would’ve liked to go out on the beach, I didn’t have the heart to wake Sam, so I stayed in the car while he slept. And then we headed to the Ballard Locks and Botanical Garden…where Sam remained asleep and I remained in the car. He finally woke up when we were headed to a play area for Cason. Ah well…I may have missed some neat places, but at least I got to catch up on my reading while I sat with sleeping Sam, right?!
We stopped for lunch at a place called Veggie Grill, which has gluten-free options, and I had another salad. (Apparently I was a salad fiend this weekend….) Then we headed back to Lisa and Chris’s house to put Cason down for a nap. Alas, he decided he only needed to sleep for half an hour, so he was soon back up! And by then Sam was grumpy, so we decided a walk would do us good. We wandered around the neighborhood for a bit before Lisa and Cason took Sam and me to the airport.
Our flight home was a little rougher than the one out–Sam was pretty grumpy and fussed for the first 45 minutes of the flight. Then he fell asleep on my lap…only to awaken an hour later, when we started our descent. He cried and cried–I think his ears were bugging him. But once we landed, he was fine.
As it turns out, I followed my mother’s intuition this morning and took Sam in to Kaiser, just to have them check his ears. I figured his tiredness/fussiness was likely due to the tooth he is working on, but I figured I’d just have them check in case it was an ear infection. And lo and behold, it was another ear infection. So now he’s on another 10 days of antibiotics that give him diarrhea. Sigh… Oh well, at least it didn’t get bad until we were leaving Seattle, so we were able to have a nice weekend!
And that wraps it up, folks! Hope you all had a lovely week!
JUNE 2, 2013: BODY OF A BABY, MIND OF A TODDLER
Happy beginning of June! We certainly started it out with some rather blistering weather. I think it was 94 degrees on Saturday, and not a whole lot cooler on Sunday. We escaped the Saturday heat by going to one of our favorite parks on the other side of the Bay for a picnic–lots of shade there! They usually have a sprayground for kids to play in, too, but it was closed. Still, the shade kept it quite tolerable, and both boys had a good time.
We didn’t beat the heat on Sunday, though. Instead, we heated up our house by making apricot jam and apricot butter, which required the stove to be on pretty much all day. Yikes! But our apricot tree tends to have the fruit ripen all at once, and apricots don’t last very long, so we had to make it or waste them. We harvested about half of the crop, and it turned out to be 11.5 pounds of apricots! There’s still at least as many ’cots left on the tree, and they should be ripening in the next couple of days. Don’t ask me what we’re going to do with them, since we already have 13 jars of jam and 24 jars of apricot butter! One family can only eat so many apricot products, after all. I may try to dry them and then give some away. I won’t be home next weekend to do anything else with them, so I need to figure out something easy I can do with them during the week.
Another way we beat the heat was by swimming! Our community has a pool, which happens to be located right across the street from our house. Theo loves swimming (with a life jacket on–he can’t yet swim without one), and this year Sam is old enough to go in, too. I got Sam a little shaded float for the pool, and he likes hanging out in it with me. Meanwhile, Theo paddles happily around the pool and plays with whatever kids happen to be there. It’s so nice to have easy access to a pool but to not have to maintain it ourselves! We can just stroll across the street, take a dip, and stroll back home. Easy!
Funny thing is, Theo has become a fan of the hot tub, too. They keep the hot tub warm but not scorching, so the kids like to go in it. Sam is too young for it, but Theo has decided that it’s great fun to hang out in the “warm pool.” What’s funny about this is that he has always hated warm water! Up until two days ago, he wouldn’t even take a warm bath–he prefers a cool bath, even in the winter. And yet, suddenly the hot tub is the place to be! He has also developed a fondness for the handheld shower at the pool, which is funny because he absolutely freaks out if you try to get him to use a shower at home (even if it’s a handheld one or a kid-height one–we’ve tried both). I’m hoping that him getting comfortable with the shower at the pool will help us transition him into showers here at home. It would be easier than bathing him all the time, for sure…. Plus, it’s nice that he’s willing to go in it and spray the chlorine off after swimming, so I don’t have to bathe him every time.
Anyway, I can see that the community pool is going to be my favorite part of our neighborhood this year!
Last weekend was actually quite cool, and so on Monday (Memorial Day), we decided to take a short hike at Mt. Diablo. I’ve been wanting to try out the hiking backpack with Sam, and the weather was perfect for a nice morning hike. (I got that backpack free, which I was so excited about! It’s normally about $200, and a fellow Clayton resident gave it to me for free–wheee! She said she was just glad someone would use it, and she knows our landlord, so….) Plus, Theo was having a really rough time on Monday morning (more on that later), and we figured getting him out in a quiet place where he could roam and find sticks and rocks and play in the dirt was a good thing. He likes nothing better than puttering around in the outdoors, so we figured that would be a good start for the day. And it was, actually…but unfortunately, the goodwill did not last throughout the day. But again, more on that later. The hike was nice (a short one, but lovely), and the best part was seeing a family of wild turkeys on the path! There were about a dozen babies, and I was so excited! I have a great fondness for wild turkeys….
The other excitement for the week (and this was really exciting, let me tell you…) was my colonoscopy. Woohoo–what a life I live when this is considered excitement! Seriously, though, it was good to finally check into these persistent digestive problems I’ve been having. Anyway, my colonoscopy was scheduled for Thursday morning, so that meant my last meal was Tuesday’s dinner. Because I knew I’d be getting sick on Wednesday anyway (the pre-colonoscopy prep), I decided I was going to splurge and have a gluten- and dairy-filled extravaganza! The gluten item I miss most of all is pizza–I truly love pizza. And gluten-free pizza is just not as good. So, we decided to use a giftcard our landlords had given us for Christmas and go out for pizza. And oh my, I enjoyed it! It wasn’t the best pizza I’ve ever had, but it sure beat gluten-free pizza! And afterward, I used a Cold Stone Creamery giftcard Chris had gotten me for my birthday and got a scoop of ice cream. Oh, heaven!! Perhaps not surprisingly, the gluten-filled dinner only stayed with me two hours. And it wasn’t pleasant making its way back out–gluten is clearly not my friend. But oh, I enjoyed it while I ate it!
Wednesday evening I had to start my pre-colonoscopy prep, which everyone tells me is the worst part of the procedure. I can’t stay it was pleasant, but it wasn’t nearly as bad as I expected. I think two years of near-constant diarrhea actually helped, in this case–I’m so used to getting sick that the “bowel evacuation” was no big deal. 🙂
As for the colonoscopy itself, it, too, wasn’t bad. I mean, I’m certainly not jumping to have another one, but it wasn’t bad. Because I generally go the route of full disclosure on this blog, I’ll admit something here: I have panic attacks where invasive medical tests and procedures are involved. And unfortunately, I cannot control them. I do fine with anything external–no problem. But anything that involves doctors probing me internally, and I completely flip out. I wish I could control it, and I’ve had plenty of therapy to help me try…but it hasn’t worked. I am just a wreck. Last time this was an issue, I had “conscious sedation,” which is where they give you drugs (Fentanyl and Versed, for me) that make you basically sleep through the procedure. In reality you’re awake, but you don’t remember a thing because the drugs relax you pretty heavily and give you “amnesia.” At least, that’s how they’re supposed to work. Only last time, I “woke up” and knew exactly what was going on…and I had a really bad series of panic attacks. So bad that they couldn’t really do the procedure. Afterward, I told the doctor what I remembered and said, “Did I dream this or is it really what happened in there?” She told me it was really what happened and that the next time, they’d just go straight to full sedation, since they weren’t able to really complete the procedure. Sigh…
So there you go–I’m a neurotic freak about invasive medical things. And so when the doctor told me she recommended a colonoscopy, I flat-out told her, “I think you’re right, but I don’t want to waste your time–I’m pretty sure this won’t work with conscious sedation.” (Conscious sedation is what’s usually used for colonoscopies.) And for as much as I complain about Kaiser in terms of having to wrangle with them for Sam’s services, they are great about working with me on the panic attacks. The doctor who saw me called the GI doctor, and he immediately agreed to use full sedation–specifically, Propofol (a.k.a. the “Michael Jackson drug”). And let me tell you, that is a wonder drug! On Thursday morning, when I checked in at Kaiser, I told pretty much everyone who would listen that I wake up during conscious sedation and that they needed to make sure I wouldn’t wake up during the procedure. (Seriously, I’m sure I was quite annoying. But if I have a panic attack even during a simple internal procedure, can you imagine how bad it would be if I woke up and had a camera stuck up my rear end? I’m pretty sure I would come flying off the bed and stick to the ceiling of the exam room!) And they assured me that no one wakes up under Propofol. They were all very nice, and when they wheeled me into the procedure room, I was terrified. But I heard them say, “It’s 10:39; let’s administer the Propofol,” and I said, “Wow…I feel funny….” as I watched a crazy rainbow circle my field of vision. The next thing I knew, I was in Recovery, and it was 11:20. Done! And I didn’t wake up! And even better, I was able to get up, get dressed, and leave within a few minutes. And I could nurse Sam right away. Apparently, once they turn off the Propofol, it’s pretty much out of your system right away. Wonder drug!
So, the good news is I no longer fear colonoscopies. I will simply insist on Propofol every time, and all will be well because I know that it’s a wonder drug. And that’s a very good thing, because I have to have colonoscopies every five years now. Sigh…that’s the bad news. The good news is that visibly, my colon looked pretty good–some discoloration usually found in people who use laxatives (which is weird because I’ve never taken a laxative in my life–I have the opposite problem!), but otherwise healthy. They took some biopsies that should be back next week to check for issues that wouldn’t be visible just through the colonoscopy, but the doctor said it looked pretty good. The bad news is that they found one fairly sizable polyp (which they removed), and it did turn out to be of the precancerous variety. So now I have to have colonoscopies every five years, and my kids have to start getting them every five years at age 29. Yikes–lucky them. 😉
I kind of can’t believe I just talked about my polyp on the Internet, but what the heck? Maybe it’ll encourage someone who’s been putting off a colonoscopy to go get one. I mean, if I had ignored all this gut mess and not gotten one until age 50, which is the normal age to start getting them, would my polyp have already turned into cancer by then? The thought kind of terrifies me. The doctor told me it was a good thing I’d had it done, as he thought it was fairly sizable and definitely needed to come out. My family (on my Mom’s side) has a terrible history of colon cancer, so yeah…I need to be careful. I need to make sure I’m here for my boys as they grow up!
I’m curious to see whether this resolves any of my gut problems. I read that usually people don’t even know they have polyps, but some people end up having chronic diarrhea (or constipation) with them. So now that the evil polyp is gone, I’m curious whether my chronic diarrhea will abate. I have felt pretty good since the procedure, and in fact I ate xanthan gum with no problem on Saturday. (For the past several months, xanthan gum would send me into an attack within a matter of 12 hours or so. But this time, it seemed to go down just fine.) Time will tell, I guess… My plan is to continue following the naturopath’s suggestions for diet and supplements, as well as following the doctor’s advice for a specific probiotic. I’m hoping that by being careful with my digestive health, perhaps I can prevent (or at least slow) more polyps from growing.
So there you go–a lovely gut update for you. I hope by now you’ve learned not to read our blog while eating. 😉
Anyway, let me move on to this week’s title: Body of a Baby, Mind of a Toddler. Mr. Sam is making some serious progress these days, in terms of maturing! His motor skills and body are still very much those of a baby. He crawls pretty well and sits up well, but that’s about it. He’s practicing standing a little, but not much. And his fine-motor skills are still very babyish. There’s nothing wrong with this–it’s to be expected given that he has DS. It’s just reality. But his mind is definitely making the leap from baby to toddler, which is very cool! He moves with deliberation and determination now–he sees something he wants (which is usually something he shouldn’t have), and he goes for it. And he’s definitely making strides in cause-and-effect, too. For example, he now makes these little squeaks and purrs, almost like a tiny kitten. And it’s adorable, and I hug him like crazy when he does it. And he has figured this out, so now when I pick him up, he makes his little kitten sounds and snuggles right down into me, smiling a mile-wide grin. And when I’m sitting on the floor with him, he crawls over and makes his little squeaky-kitten sounds and then launches himself into my lap for a hug. I’m quite sure he knows exactly what he’s doing! He also knows how to try to get out of PT and OT, and he will try every trick up his sleeve to do so–and again, I’m quite sure it’s deliberate! So it’s really fun to see those sorts of toddler behaviors (oh, and the tantrums–we’ve got those, too!) coming out, even though he still looks so very much like a baby!
As for Theo, his preschool graduation is this week–I can’t believe it! I’m seriously in mourning, because I love his teachers and his class, and I wish we could take them with us! I volunteered to make the cupcakes for the graduation, because he’s my first kid, so I can still be Cool Cupcake Mom. I guarantee you that when this time rolls around for Sam, I’ll be worn out and will likely be Bag of Chips Mom. Or better yet, maybe I’ll be I’ll Bring the Cups Mom. Because that’s what happens with kids after the first, right? You lose all that ambition you had with #1, and you turn into Bag of Chips Mom. 😉
I haven’t talked too much about Theo lately because…well, frankly, he’s been quite the challenge. For about two months now, he has just been really struggling, and we’ve tried everything we can think of to help him out. He has good days, for sure, but he has had a lot of not-so-good days. More than usual. Memorial Day was pretty much the worst day I can remember with him. He was just out of control, and nothing we could do seemed to help. He ended up spending most of the day in his room on numerous time-outs…not that they did any good. I finally broke down and did the thing I said I’d never do–swatted his bottom. I have a few friends who spank, and they’ve mentioned that sometimes, it’s theonly way to sort of “reset” their kid’s behavior. And yes, we got to that point on Monday–Theo was out of control, and nothing worked. And so, without doing so in anger, I swatted his bottom. And that did nothing, either. It made him even angrier, and several times since then, he’s threatened me with spankings. (Sigh…) I can’t say I’ll be doing that again–it didn’t seem to do any good, and it’s not anything I wanted to do in the first place. Don’t get me wrong–I don’t judge people who spank. I was spanked as a kid, and it didn’t hurt me any. It’s just not a method I personally care for. But I was out of ideas. And I’m still out of ideas, since that didn’t work. Well, I was, but then I talked to Theo’s teacher and said, “Okay…help. We’ve tried everything, and this bad patch doesn’t seem to be passing. What can we do?”
Turns out Amanda had been having the same problems with Theo as we had. And I kind of knew that–she had alluded to it several times in the past two months. The wonderful thing about Amanda is that she doesn’t run to us with every little thing. She works with kids who have behavior challenges all day, every day, and she’s a very good judge of what can be handled in the classroom and what she should bring the parents in on. And so when things become a real issue, she talks to me about it…but if it’s just a series of little things, she simply handles them. So I had some idea that she’d been having some issues with Theo, but we hadn’t talked a lot about it. But we did this week, and we implemented some new strategies we can use both in class and at home, and hopefully that will help. Theo does seem to have mellowed a bit in the past few days (this weekend was much better than a lot of last weekend), so maybe we’re on a better track.
As I told Amanda, some days I’m so confident that Theo will do just fine in kindergarten…and other days, I wonder how on earth he’s going to cope. Because that’s a big change, and he hasn’t been coping well for two months…with no apparent change. Honestly, we can’t figure outwhat triggered this rough patch for him. We’ve been driving ourselves nuts trying to figure it out, because if we knew the trigger, we could better help him. But we just don’t know–and Amanda doesn’t know. She did mention that in the year she’s been with Theo, she’s found him to be very up and down. Sometimes, he’s sailing along just great…and then he crashes and burns for a while. And then he picks himself back up and sails along again. It’s just very up and down, and she said the good thing is that we know that, and Dr. Lio (his inclusion specialist) knows that and can keep an eye on things at kindergarten to modify if he starts to go into a downslope.
So…there you go. It hasn’t been all roses here lately. But it hasn’t been awful, either. I mean, this is just Theo, and we know that. We know there are always going to be challenges above and beyond normal parenting with him, and that’s fine. It’s just a matter of knowing how to deal with them, and sometimes it takes us a while to figure out what’s bugging him and how to help him.
One thing we have learned is that whenever he’s uncomfortable with something, he acts out. And his way of acting out (lately) is to get almost maniacally silly. He quickly spirals out of control, and it’s hard to get his behavior settled down. For example, I watched his OT session this week, at his request–sometimes he doesn’t care if I do, so Sam and I will do an errand, and sometimes he specifically asks me to stay. This week, he wanted me to stay…so I did. And he was doing terrific…until his OT asked him to walk on a curved balance beam. This is very difficult for him, and instead of just saying it was hard or asking for help, he responded by suddenly starting to laugh maniacally and goofing off and not cooperating. And this is typical for him–when something is tough for him, that’s how he reacts. He did the same thing later, when his OT played a game with him where he had to discern different shapes by feel. He struggled with the game, and instead of asking for help, he just turned it into goof-off time and quickly got out of control. As his parent, this is very frustrating (and I’m sure it is for his teachers and OTs, too!), but I just remind myself why he’s behaving that way and try to deal with him.
Similarly, if another child misbehaves, it makes Theo uncomfortable, and he responds by laughing maniacally and misbehaving himself (and often encouraging others to do so as well). Amanda has been trying to teach him coping techniques for when he’s stressed like this, but it’s a slow process. (This is more an issue at school than at home, since Sam doesn’t misbehave at this stage. But if Sam cries, Theo will act similarly, so I know exactly what he’s doing at school too.)
This is actually one reason why Amanda recommended that Theo be mainstreamed. She and Dr. Lio both feel he needs more positive role models than he gets in the special day class. A lot of the kids in the class have some behavior issues (my son among them, of course!), and he really feeds off of that. So they’re hoping that by being around more typical kids (with, hopefully, more typical behavior), it will stop this pattern that Theo seems to be in.
I’ve been thinking a lot about the idea of “tokens” with regard to autism, too. It’s a somewhat new concept to me, but it makes sense, and I’ve been trying to keep it in mind with regard to Theo. You can find information about tokens and autism in a number of sources, but I first read about them on a blog called Life, His Way (lifehiswayblog.wordpress.com). Here’s the simple definition the blog author gives:
The term “tokens” refers to the amount of energy, processing ability, emotional regulation, coping skills, etc., that a person has. Assume for the sake of simplicity that you start each day with a fresh supply of tokens. Everything you do that taxes you in some way costs you some tokens.
If you are autistic, you spend more tokens on many tasks than a neurotypical person does–getting dressed, for example, takes more tokens because of the sensory processing involved.
Throughout the day, it doesn’t matter where you spend your tokens–when they’re gone, they’re gone. So Nick goes off to school with a decent supply, but if he uses them all up to get through his classes, he won’t have any left by the time he gets home.
Out of tokens + new demands = meltdown.
If I can avert a meltdown by sending him immediately to his room where he can recharge by spending time alone and perhaps with a very easy special interest, he may be able to build up some more tokens to get through the rest of the day. But if he melts, he will need so much time to recover from the meltdown that the day will be shot. Even a special interest may be too taxing (Nick’s fencing class, for example–he loves it but it he has to go into it with enough tokens to deal with the noise, lights, and social demands).
So I’ve been trying to keep this in mind with Theo. Because he reallytries to behave–I know he does! But sometimes, I think all that effort he has to spend working on appropriate behavior, OT tasks that are hard for him, complying with the rules in the classroom, etc. just leaves him fried and unable to behave any longer. At some point, he is just spent.
I think this may be why we experience what we call “post-grandparent days.” Theo loves to see his grandparents–my Mom or Chris’s parents. And he is generally pretty well behaved when he does. Last weekend, for example, we went to see my Mom, and he did excellent! But the next day after a grandparent visit, he is almost always a complete handful. And I wonder about this concept of tokens–is a visit to someone else’s house enough effort for him, in terms of behaving in a new place, etc., that he is then sort of spent and needs to recharge? It’s entirely possible.
So this is my new strategy. I’m trying to keep in mind this idea of tokens, and when I know that he’s had a lot of events or activities that make him spend “tokens,” I try to build in time to recharge. This week, for example, he was very agitated early in the week–I think partly because he knew I was going to the hospital for a morning, and that freaks him out. So he had OT and school on Tuesday, and then school and OT on Wednesday–things he enjoys but that are taxing for him. So on Wednesday afternoon, after OT, I just let him watch TV. A lot of TV. Shoot me now–I know I’m supposedly an awful parent if I let my kid watch too much TV. But it was a way for him to relax and decompress, and there aren’t really any other ways that he does that. (He has a lot of activities that he enjoys, but most of them amp him up rather than relaxing him. Books wire him, music wires him, playing outside wires him, spending “quiet time” in his room often wires him…you get the idea.) And you know what? He did great. After a couple of hours of TV, he was relaxed, cheerful, and he did fine the rest of the evening. The next day (when I had my appointment), he did great in the morning (when Papa came to watch him and get him on the bus). He had a good day at school, and a good afternoon when he got home. He was mellow and calm. So, I’m not saying my answer to calming Theo down is to throw him in front of the TV every time–rather, I’m evaluating situations as they arise and trying to give him a way to recharge, in some manner, when I think he needs to.
Will this consideration of tokens work to help smooth out the behavior issues we’ve been having? Heaven only knows. I’ll keep trying it and let you know. 😉
In the meantime, I’ll sign off for now, since I’ve rambled long enough. Next week, the blog will be up one day late. I’ll be in Seattle with Sam from Friday afternoon through Sunday night, so I’ll put the blog up sometime Monday. Hopefully with lots of tales of Sam’s and my adventures in Seattle and Chris and Theo’s adventures here at home!
MAY 26, 2013: HAPPY MEMORIAL DAY!
Happy Memorial Day, everyone! I honestly don’t think I have any military folks who read this blog, but just in case I do…thank you for all you do for our country, today and every day!
We couldn’t ask for better weather this holiday weekend, so on Saturday we set out for a fruit stand 90 miles away. Which isn’t nearly as weird as it sounds, I promise! If you’re from California, chances are you’re aware of Casa de Fruta, the roadside attraction that for many years was one of the only good stops on that route between the Los Angeles area and the Bay Area. The orchard has been around since 1908, and the business opened as a cherry stand in 1943. In the 1960s, the family expanded the operation to include a restaurant, gas station, playground, train, carousel, and gift shop. And now there’s Casa de Fruta (where you can buy, predictably, fruit), Casa de Sweets (for yumminess…not that I can eat it), and Casa de Wine. And it’s just a neat place to go if you’re into kind of retro old places that remind you of your childhood (well, if you grew up in the 1960s or 1970s, anyway).
So, given the warm but breezy weather, the fact that we haven’t been there in a couple of years, and the fact that long drives often equal naps for the boys, we decided to go. Only there was a lot of traffic. More than we expected going in that direction on Saturday–we figured Friday and Monday would get the bulk of the traffic. So, we ended up stopping in Morgan Hill at a grocery store I heard about that is a gluten-free heaven!Seriously, I could’ve spent hours in there. (Oh dear–I sound like Chris!!) They had every gluten-free product known to man, I think! Including some gluten-free chocolate granola Theo likes that I hadn’t been able to find elsewhere. It’s probably a good thing they were closing early for the holiday weekend, or I might’ve done some serious damage to our finances in there!
By that time Theo was hungry for lunch, so we stopped at In ’n Out Burger (a popular California chain that works for me because they offer burgers “protein style,” without the bun–plus, it’s ridiculously cheap, which is an added bonus), got some takeout, and set out to look for a park to picnic at. Only Morgan Hill is apparently quite lacking in parks, so I jokingly pointed to an office complex with a nice shady grass area and said, “We could just toss the picnic blanket out there and eat.” And Chris, who by that time was hungry and frustrated that his plans for the day weren’t going very well, rapidly pulled over and said, “Yes. Let’s just eat here.” So, we looked rather strange having a picnic at some random office park, but it was actually quite lovely. It was shady and breezy, and we had a lovely little lunch. We discovered that Sam is a big fan of french fries–only, of course, he just licks them, gums them slightly, and then discards them. He’d chew one briefly, then toss it aside and sign “more” for another one. (Yay, Sam!) At one point, he took it upon himself to replenish his supply by crawling over to Theo’s basket of fries and grabbing it. He he he… Theo, the ever good-natured brother (seriously, I can’t believe the patience my normally impatient son has with his baby brother–it’s incredible), simply moved his fries away without a word, pulled out one, handed it to Sam, and said, “There you go, Sam. Here’s a french fry.” And he kept Sam supplied with fries for the rest of the meal. When I picked Sam up at the end, there was a lovely little pile of discarded licked/gummed fries around him. 🙂
After lunch, we continued to Casa de Fruta and finally made it there. Sam had his first carousel ride–on the second floor of a vintage two-story carousel (because of course Theo wanted to ride on the second story!), as well as his first train ride. The train ride was actually pretty cool–it was longer than most of those kiddie train rides, and it went through the whole property, which had probably 100 antique, rusted-out farming trucks and tractors and such along the way. Very cool to see all those old vehicles! Theo enjoyed playing on some of the train cars they have for kids to play on, too. He and some other kids had quite the elaborate imaginative-play scenario going on in a train engine at one point. And after a couple of hours, we headed back home, with both boys snoozing in the car. Bliss!
On Sunday, we headed up to Sacramento to visit Grandma Diane, Auntie Lynnie, and cousins Stevie and Noelle. Grandma Diane, Theo, and I had a picnic lunch in the park while Chris and napping Sam hung out in the car, and then we met Auntie Lynnie and Noelle and Stevie at Grandma Diane’s house. Sam played happily on the floor, entertaining everyone, while Theo quizzed Auntie Lynnie about her neighbor’s son’s stint in jail. (Last time we visited, Auntie Lynnie mentioned offhand that her neighbor’s son had been to jail for a short stint, and Theo immediately wanted to know more about it. This time, he remembered that conversation from last time and wanted to get some more details. He aspires to go to jail, though I think we’re succeeding in convincing him that jail is not a fun place!)
Our other excitement of the week was our long-awaited Fleetwood Mac concert! Let me give you some back-story here, for those who don’t know it. The night I met Chris (not the first day I ever saw him–that was six months earlier–but the night I first talked to him), we were at a New Year’s Eve party, and we ended up talking for three hours. Dick Clark’s New Year’s Eve special was on the TV in the background, and Fleetwood Mac was performing. I made a snide comment about them sounding terrible, and that they should’ve retired years before. Unbeknownst to me, Fleetwood Mac is Chris’s favorite band of all time. In retrospect, I’m surprised he asked me out after I made that snarky comment! Though he says he was just impressed that I knew who they were. (But who doesn’t know Fleetwood Mac?!)
Anyway, four years ago Fleetwood toured and were supposed to do a show in Sacramento that just happened to fall on Chris’s birthday. Awesome! I was so excited! Obviously, the tickets were his birthday present, and I was so excited that we’d get to see them in concert on his birthday! I had never seen them, and he was really excited to go with me. We got my Mom to babysit Theo, went out to dinner at a nice restaurant…and found out two hours before the show that they were cancelling it. Two hours before. Sooooo frustrating! The night wasn’t a total loss–since we already had babysitting lined up, we went to seeStar Trek instead, which actually was a pretty good movie. But it was still disappointing. They never rescheduled the show, and although we got a full refund, it was still a bummer.
So here we are, four years later, and they’re touring again–with a stop in San Jose, just four days after Chris’s birthday! So we lined up babysitting (thank you, Grandma Kathy and Papa!), got the tickets, and on Wednesday night we went. And I have to say, it was worth the wait. It was a great show! They are a really good band to see live, in my opinion–especially if you’re a fan of their music. Chris is a diehard fan, and I mostly like the stuff from the 1977 Rumours album, along with a smattering of other songs. But I found I enjoyed almost all of the songs live–even the ones I’m not overly crazy about on CD. And I was totallyimpressed by Lindsey Buckingham’s guitar playing! I’m not a music connoisseur by any means, but I know what I like, and to me, his guitar playing was amazing live! I kind of wish Theo had been able to see it, because he’s pretty obsessed with electric guitar, and I think he would’ve been fascinated. But he’s actually been playing along with the Fleetwood Mac song “The Chain” (though he misheard the lyrics and thinks it’s called “Jeans”–shades of his mama, who is notorious for messing up lyrics!) all week, and it’s funny to see his rock-star swagger, which isn’t entirely unlike Lindsey Buckingham’s. In fact, I’ve posted a short video on the Still More Videos page of “Theo Buckingham” playing “The Chain.” In addition, I’ve posted a short video of one determined Mr. Sam repeatedly attempting to crawl up on a tile stair. One stereotype of folks with Down syndrome that seems to often be true is that they’re very stubborn–and Mr. Sam proves that to be true frequently!
But back to the concert for a moment: Chris and I seem to attract small-world coincidences, and we had another one happen at the concert. It turns out that a high-school acquaintance (who I haven’t seen in 20+ years) was sitting three rows behind us at the concert. Crazy small world!
In other news, I’ve now got a couple of weeks of online teaching under my belt, and I’m so enjoying it! Honestly, I think I was kind of burnt out without even knowing it. I’ve always enjoyed my job, and I still enjoy it (mostly), but getting to try something new has just really energized me. I have 25 students, and 24 of them are absolutely delightful so far. The other one…well, let’s just say there’s one in every class. 😉 Anyway, I’m glad UC Berkeley has hired me again for the fall, because I’m really enjoying this! It turns out my in-person class is going to be on Saturday afternoons (October through December), so I’m kind of sad to give up my Saturdays with my boys…but we’ll just have to make sure Sundays are fun!
Let’s see, what else can I fill you in on? Sam is crawling more these days. He’s still much slower and more deliberate than Theo was (Theo was just a crawling machine!), but he’s definitely mobile now. We still haven’t had to really baby-proof because he’s far more tentative than Theo was, but that time is coming. I think the gates on the stairs will have to go up in the next couple of weeks.
Sam’s personality is really showing, too. In terms of motor skills and size, he’s still very much a baby, despite being almost 16 months old. But in terms of personality and cognition, he’s starting to resemble a toddler more. He thinks certain things are funny, and he’ll go out of his way to do them, and then laugh like crazy. He gets furious if he thinks you’re taking a toy away from him. (Both his PT and his OT learned this one the hard way!) He’s very distracted by Theo–feeding him is difficult because he just wants to stare at Theo instead of eating! And he crawls around following Theo, which is quite cute. In the video of Theo performing “The Chain,” you’ll see Sam start applauding in the middle–no prompting from me. It’s just little things like that–the wheels are starting to turn more in his little brain, and it’s so neat to see! He has also finally reached the age of being difficult to change. Theo reached that somewhere around four months–he’d roll on the changing table, flip over, try to get up on his hands and knees. It was like a wrestling match to change him. Up until very recently, Sam would just lie there calmly while being changed. No more! If he’s wide awake when you try to change him, he now flips over and tries to crawl away–and gets mad if you stop him! He he he…
Well, I suppose I should share an update on my gut health with you all. I’m going to leave out gory details and be vague, though. Because I’m pretty open about things on this blog, but some things are just a little too icky. So let’s say this: As you all know (since I’ve complained vociferously about it), I couldn’t get our medical group (Kaiser) to take seriously the ongoing digestive problems I’ve been having. And so I’ve been seeing a naturopath to try to get to the bottom of them. And I’ve seen some improvement, but not as much as I (or my naturopath) would’ve liked. But my Kaiser doc had told me, “I’m not concerned because you’re not having X symptom.” And oddly enough, Chris and I were discussing my health on Wednesday, and he asked me to pressure Kaiser to look into it further if the naturopath wasn’t able to help me resolve it within a few more months. I said, “Yes, I’ll do that. But they said it probably isn’t serious because I don’t have X symptom.” This was Wednesday afternoon, driving down to San Jose to drop the boys at his parents’ house. We dropped the boys. And upon going to the bathroom, I discovered X symptom–the one that they said, “If you have this, we need to be more concerned.” Greaaaaaat.
So, I called the advice nurse and said, “Here’s what’s going on. What should I do?” She made an appointment for the next morning. I went in and saw a doctor who isn’t my primary (she had no openings). I expected to have to beg for help, since Kaiser has spent the last couple of years telling me, “It’s just irritable bowel syndrome. Do you know how to manage stress? You should come to our class to learn healthy eating habits!” And every time I’ve said, “I know what irritable bowel syndrome is like, having had it for years, and this is much worse and not going away. And I’m not an overly stressed person, and I know how to eat healthfully!” And still, they dismiss me. So I expected to have to beg for help, despite the presence of X symptom. But I was wrong. The doctor I saw was aghast that my doctor had blown me off. She said, “Didn’t she order a colonoscopy for you? Or advise you to have more tests?” I said, “No–she told me to go to your Functional Bowel class.” The doctor shook her head and said, “I’m sorry, but that is not how we’re supposed to practice medicine. I know people like your primary physician and that she’s supposedly nice, but I’d advise you to change to someone else. They should’ve looked into this for you long ago. You need a colonoscopy.”
So, thank you!! Finally someone taking me seriously! (Too bad she’s not taking new patients right now!) It’s not that I want a colonoscopy (quite the contrary), but I’ve been getting sick for two full years. That’s just not right. I’m a healthy woman who takes good care of herself–there’s something not right about being chronically sick for two straight years. And so, this week I’ll have a colonoscopy. Joy. But hopefully we will get some answers. She said it could just be an extremely bad case of irritable bowel syndrome, but she doubts it, due to the presence of Xsymptom. So I guess they’ll check for celiac disease (wouldn’t surprise me, given that I can’t eat gluten!), Crohn’s disease, polyps, ulcerative colitis, diverticulitis (my Mom had this for years, so this one wouldn’t surprise me, either), and, of course, cancer. (We have a terrible family history of colon cancer, but I’m so young that I honestly don’t think it’s that. At least, I certainly hope it isn’t. I suspect one of the other conditions is much more likely.)
Honestly, I’m terrified of the colonoscopy. But I also want to get healthy. And heck, Theo thinks I’m lucky to get it–when he heard that I get to eat lemon Jell-O all day on Wednesday, he said, “That sounds like a real treat for you, Mom!!” HA! Colonoscopy prep is a treat?! I love it! I’ll remind myself of that when I’m running to the bathroom all night. 😉
Kaiser has tended to blame my problems on stress, which frustrates me. Because I really don’t think I’m overly stressed! Here’s the thing: Latelyeveryone seems to think I must be stressed. Friends, family, doctors, random people I meet. They hear that I have a son with Down syndrome, and they assume I must be stressed. Or sometimes they hear that I have a son with Down syndrome and one on the autism spectrum, and they assume I must be highly stressed. Or they hear that Sam doesn’t sleep, and they assume that I must be stressed. And I will admit that I have some stressors in my life–as much as Down syndrome is only a small part of Sam, it isn’t always a walk in the park. And I can say the same about autism. And I work plus care for my kids, so yes–that’s some stress. But here’s the thing: Despite having stressors in my life, I actually don’t think I’m very stressed! On the contrary, I think I handle stress quite well. I have my down days like anyone, but easily 95% of the time, I’m happy and content and calm. Sure, I’d love some more sleep, but I muddle through.
The doctor I saw actually offered to prescribe me an anti-anxiety drug. I started laughing and said, “Well, thanks, but I’m actually not very anxious at all. I’m really nervous about this colonoscopy, but in general I’m a pretty calm person.” She said, “Yeah, you don’t seem very stressed out, but I just thought I’d offer, since you said you have a lot of anxiety about the procedure. But you seem like a pretty calm person.” Indeed…
So I do appreciate people’s concern, but honestly, I’m just not that stressed overall! I think we adjust to what life gives us, you know? People not living my life think it seems very stressful: one son on the autism spectrum, one son with Down syndrome, work, childcare with no help… But if you’re me, and this is the life you built and purposely chose and have been living, it doesn’t seem any more stressful than anyone else’s life. It’s just my normal, you know? And overall, it’s a pretty calm normal. Horrible medical procedures aside… 😉
So, please think good thoughts for me on Thursday–that we get some answers and that it’s something easily treatable and not overly serious. I’ll share an update next week–with no gory details, I promise!
MAY 19, 2013: HAPPY BIRTHDAY CHRIS!
First and foremost, happy birthday to Chris, who turned the big 3-7 on Saturday! For his birthday, he got…a clean house! Seriously. I couldn’t think of anything to get him, and both he and I love a clean house more than just about anything, so I decided to hire The Maids (a local company) to come clean the house. And he loved it–he was so happy to come home from work to a spic-and-span house. He also got a bag of crap from Theo and Sam. Okay, not literally crap, but my new practice is to give Theo $5 and let him pick out birthday gifts for people. And since it would be no fun if I had to say about everything, “No, that’s more than $5, so we’ll have to put it back,” it’s easiest to just turn him loose in Target’s $1 section and say, “You have $5, which means you can pick out five things for Daddy. Go!” So Chris got, from the boys, a bag of Bugles corn chips, a pack of Mamba candy, a set of coasters that look like chocolate-chip cookies, a weird little plastic monster, and a small bottle of sunburn gel. That last one is actually semi-appropriate, since Chris staunchly refuses to wear sunblock, no matter how much I harass him about the dangers of sun exposure.
On Chris’s actual birthday, our day started out somewhat dismally. Sam woke up in a horrible mood–don’t ask me why. Teething? Lousy night of sleep the night before? Heaven knows. He was crabby. Theo was feisty, too–a common occurrence when Sam is cranky. (They feed off each other sometimes, as siblings seem to do.) And I was feeling lousy–bad night of sleep, and I think I caught a touch of the stomach bug that everyone else in the family had earlier in the week. (Hard to tell because I’m always sick…but I felt worse than normal, so I think it was a bug.)
Anyway, we went to soccer and then headed up to Davis, as Chris decided he wanted to spend his birthday visiting some of his favorite haunts in Davis. We went to the farmer’s market and walked around downtown, and then I granted him a half-hour of child-free time in Nugget, his favorite grocery store. He was in hog heaven! I stayed in the car with the boys while he puttered around picking out items for a picnic lunch. Then we headed to a park we like and had said picnic. And by then, the day had improved. Theo had mellowed out and enjoyed the park, and even cranky Sam decided to stop fussing and enjoy himself. His favorite part was finding Theo’s half-eaten chocolate granola bar and gnawing happily on that for a good 20 minutes, getting covered in chocolate in the process.
It’s funny–Sam refuses to eat solid foods, but just in the last couple of days, he’s started playing with putting foods in his mouth. So far, we’ve gotten him to gum apple slices, tortilla chips, and the chocolate granola bar. He doesn’t actually eat them–he just licks them or gums them and spits out the bits. But it’s progress, to my way of thinking–for a long time, he would shriek if you brought anything near his lips. Now he’ll actually play with food, which I think is the first step toward getting him to accept it. I’ll have to experiment with more finger foods that are big enough that he can just gum on them and spit them out. He’s still not ready to actually eat any of them–he doesn’t have the correct tongue movement down yet, and he just chokes when he tries to eat things. His feeding therapist has advised that we not push him to eat small finger foods yet, since he’s not physically ready for them from an oral-motor standpoint. But I think the gumming is a good first step.
Because I felt pretty lousy on Saturday and was kind of a downer, I told Chris we needed to make the entire weekend his birthday. So on Sunday, we decided to take the boys to a park after visiting a local outlet center that recently opened. I never go shopping with Theo. Seriously. I just don’t do it. Occasionally I’ll take him into the grocery store or Target if I only need two or three things, but I never take him clothes shopping or anything like that. He hates it and doesn’t behave all that well, and it ends up just being a source of frustration. And, I don’t really think it’s fair to drag him along for something I know he hates–I mean, he’s five years old. If it’s something he hates doing, of course he’s bored. And yes, he should be able to behave, but I also need to remember that he’s five, and behavior is still a work in progress. So I just don’t even take him.
But for whatever reason, I felt compelled to finally visit this outlet center. Sam is inching toward being in 12-month clothing, and I realized that although we have a ton of hand-me-downs in larger sizes, we have virtually nothing in the 12-month size. And, I wanted to check one particular store for uniform pants for Theo, who will be wearing a uniform when he starts kindergarten. When we got to the outlet center, Sam was asleep in the van and Theo was antsy and ready to be out of the car. So against my better judgment, I told Chris I’d take Theo and go to the children’s clothing stores while he stayed in the car with Sam. And much to my surprise, Theo was an excellent shopping partner! He behaved beautifully and was cheerful and pleasant. Granted, I made it a point not to linger and pore over the racks of clothing–I went right to what I wanted and fairly quickly picked things out. But still, this was excellent progress! I managed to get a few shirts for Sam, a pair of pants, some pajamas, and a couple of uniform items for Theo–success! Then Theo politely asked if he could get some M&Ms from the vending machine, and he had been such a good shopper with me that I rewarded him with them. In retrospect, this wasn’t my best idea–his behavior was a little rougher for the rest of the day, and I reminded myself that he very rarely eats things with artificial colors. We’re not sure whether they set him off, but they do seem to create behavior issues in a fair number of kids, so we normally stay away from them. Anyway, lesson learned…but he was happy to get the M&M treat. And I was happy to have a pleasant shopping experience.
After the outlets, we went to a park and had another picnic. It was a lovely, shady day, and Theo played for a couple of hours with a little girl named Lucy who he met. They were so cute together! And Sam gnawed on more tortilla chips. 🙂
So that was our weekend, but we had a busy week, too. On Monday, Sam had his latest hearing test. He actually passed! The audiologist said that although she did find fluid in one of his ears (the other was too blocked with wax to be able to tell), he was still in the “low but normal” range for hearing. She wants to recheck him in three months, though, as these things can change quickly in kids with Down syndrome, due to their very narrow ear canals and the fact that they frequently get fluid buildup and infections in their ears. But at this moment, his hearing is still okay. Which is a good thing…in a way. Sam’s lowest area of development (by far) is speech (he’s at about a 4- to 5-month development level, despite being 15 months old), and I was told that it was likely due to fluid buildup or hearing loss. But he doesn’t have hearing loss and the fluid buildup isn’t enough to seriously impact his hearing, so…there’s no good reason why his language skills are so delayed. And that concerns me, but there’s not a lot we can do. Regional Center and Kaiser won’t give him speech therapy until at least 18 months of age, so we just have to wait. And keep using sign language with him and keep talking to him, obviously.
On the plus side, though, I think he actually does realize that I’m Mama! He started babbling “mama, mamama” on Mother’s Day (of all days!), and I thought he was probably just experimenting with a second sound (he’s been babbling “dada” for a while), but one day this week he looked right at me, said “Mama,” and crawled over into my lap for a hug. Oh, my heart melted!!!
As long as we’re speaking of Sam, I’ll share that we had a lovelyWednesday. As you may know, last Wednesday Theo was sick with a stomach bug, which returned Friday but then seemed gone from him for good. And Chris had it from Friday through Monday. I thought Sam and I were in the clear, but on Wednesday morning, Sam ate for the first time in days. (Before that, he’d take a bite or two and then start fussing. But he almost always does that, so we just figured it was his usual food aversion.) I was happy that he ate, and while he was still in the high chair, I went to help Theo brush his teeth for school. Suddenly, Sam started crying, so I went back to the kitchen to see what was up. He and his high chair were covered in vomit. Not spitup, which is typical around here–vomit. Everywhere. Oh, crud. So I mopped it up and grabbed him and took him to the changing table. But when I unzipped his PJs, I discovered that he had vomit inside his PJs, too. How did that happen? Turns out it wasn’t vomit–he had also had a massive diarrhea blowout, and it just happened to match the vomit in color. (Please tell me you don’t read my blog while eating–HA!) So there I am, trying to get him stripped down while telling Theo, “Put your shoes on–your bus will be here any minute! Wait–your socks are upstairs–go get those! Okay, you’ll need a jacket, too–grab that!” And the dogs are barking because I have the front door open to watch for the bus…and if the front door is open, they must bark (it’s apparently pug law or something). Meanwhile, Sam keeps putting his hands in the muck and mess…and then, being a baby, shoving them in his mouth. Every time I wiped his hands down, he’d get another handful. And as it turns out, I couldn’t get his diaper and PJs off of him without plunging my hands into the mess, so I finally just took a deep breath and went in. So…much…poop and puke…everywhere. I believe it’s the biggest blowout mess I’ve had with my two kids. What fun. I finally sent Theo upstairs for a huge bath towel and just mopped Sam and everything else up. And managed to get him clean before the bus arrived and I had to take Theo outside to get on it. Whew!
Anyway, I kept Sam off solids for two days to get his tummy back in working order, much to his delight. He doesn’t particularly like eating solids and would prefer to nurse anyway, so he was a happy camper. And I was glad to not have any more explosions….
Oh! One more Sam story, and I promise this one doesn’t involve puke or poop! On Tuesday, Sam and I went down to Los Gatos (in the South Bay–not too far from where Grandma Kathy and Papa live) to meet up with some friends I met on one of my Down syndrome forums. One of the forums I subscribe to is mothers of kids with DS who were born in 2012 or 2013, and one of the mothers on there was going to be in Los Gatos with her husband while he was on business. She lives in Alaska and asked if anyone on the board was local and wanted to get together. Another mother in Oakland who I’ve been trying to meet up with said she was, and I said I was, too–so the three of us met in Los Gatos and had a lovely morning at the park with the littles! Sam and Seth (from Alaska) are just 10 days apart in age, and little Caj is just about six months old. We had a great time just letting the babies play in the grass while we talked, and we actually saw some older kids with Down syndrome come through the park, too. Buddies everywhere!
The other big event on Tuesday was that I started teaching again! So far I’m really enjoying it, though I can’t say I’ve done much yet. My students (I have 25 of them–my class is full and in fact has a waiting list!) have been posting introductions on our discussion board, so I’ve been reading those and commenting on them, and then I also held office hours on Wednesday night, where I opened a chat room for an hour. Two students logged in and chatted with me, which was fun. Because the class is just starting, it was more “getting to know you” than anything else. But so far so good–the online teaching system is easy to navigate, and it seems that I have a lot of interesting people in my class. Several are from Washington DC, for whatever reason (odd to have a cluster in one area), but I have a couple from as far away as Rome and Israel! A lot of them apparently have interests in cooking, which makes me wish we were an in-person class so they could bring treats for all of us! Not that I could eat them, but I could drool…longingly….
Speaking of my inability to eat, I had a follow-up appointment with my naturopath on Friday, and I got the results of my food-sensitivity testing. Here’s what I’ve learned about the test I had: There are two types of food “allergies.” One is the anaphylactic type, where you get an immediate reaction after eating something. Maybe your lips swell when you eat strawberries or you break out in hives after you eat yogurt (hello, Theo!). Those are anaphylactic reactions. The other type of “allergy” is actually more of a sensitivity, and it’s a long-term thing. You may not get any reaction at all immediately after eating something, but if you continue to eat it, you will end up having problems. For a lot of people, these problems might be skin conditions or joint inflammation. For others of us, they can be digestive inflammation and related problems. That’s where I fall–as far as I know, I don’t have an anaphylactic reaction to anything. But I do have long-term inflammation problems due to food sensitivities, and because these are not immediate reactions, they’re difficult to track down. This would explain why I haven’t been able to figure out what the heck is bothering me!
Anyway, the test I had is an IgG panel, and it measures immunoglobulins, or antibodies, in the bloodstream. IgG stands forimmunoglobulin G, the most common type of antibody. It’s found in bodily fluids and protects against bacterial and viral infections. But sometimes, the body starts to see common items as foreign invaders, and then you develop immunoglobulins to fight something that doesn’t need to be fought–in my case, foods.
Now, some of the medical community finds the IgG test unreliable, saying that just because you have antibodies (or immunoglobulins) in your system for a specific thing, it doesn’t necessarily mean anything. Basically, they say, there isn’t enough scientific evidence to prove that the presence of antibodies means anything. But, the medical community has let me down in this area. I haven’t been able to get them to take me seriously–they just keep saying, “Oh, it’s just a flare-up of irritable bowel syndrome. You’ll be fine.” But I’ve had IBS for years, and I know what a flare-up is. This particular “flare-up,” as they call it, has lasted for two years and has gotten progressively worse. No matter how careful I am, I just keep getting sick. And I’m sorry, but it’s not normal for an otherwise healthy woman who takes pretty good care of herself to get physically sick multiple times a week for no apparent reason. And to the point that it interferes with daily life. I’m just not willing to accept that this is “normal.”
So, I’m stepping outside the established medical community and putting my faith in this IgG test to give me a clue about how to get this under control. And here’s what the test said: I’m pretty highly sensitive to all dairy products, including goat milk. I’m also pretty sensitive to almonds, peanuts, and cane sugar. To a lesser degree, I’m sensitive to eggs, vanilla (go figure!), tuna, and pumpkin (again, go figure!). Oh, and spirulina, whatever that is. (I think it’s a type of seaweed plant.)
Gluten didn’t show up in the test because I haven’t eaten it in almost a year, and the food has to have been in your system at some point in the not-too-distant past for you to still have antibodies to it in your blood. But here’s the odd thing: I also haven’t been eating any dairy, so I have noidea why that showed up. And I can’t eat any baked goods because I can’t eat gluten or xanthan gum (which is in pretty much every gluten-free baked good on the market), so it’s not like I’m getting dairy baked into something. Weird!
Anyway, my naturopath doesn’t like limiting my diet too much because I’m breast-feeding and need to keep up a good nutritional intake, so she said to stay off dairy, almonds, peanuts, and cane sugar (as well as gluten and the gums), but that eggs were still okay (along with vanilla, tuna, and pumpkin, not that I eat those too often). I’m hopeful that this will turn things around. I wasn’t eating dairy anyway, but I was eating a fair amount of almond products because I had no idea I was sensitive to almonds! I was using almond milk, and I would put a spoonful of almond butter in my oatmeal. I kept getting sick, and I thought it was oats making me sick, but as it turns out it was probably the tablespoon of almond butter I was mixing in. Who knew?!
Cane sugar is a tough one to avoid. I was barely eating sugar anyway–only in coffee drinks. But I’m quite sure those have cane sugar, so I need to figure out a workaround. Oddly enough, I’d be better off using high-fructose corn syrup as a sweetener than cane sugar, because I’m not allergic to corn! Everyone thinks HFCS is the enemy these days, but apparently for me, cane sugar would be the bigger enemy.
Truth is, I’ve been feeling a bit better lately. I’m still getting sick several times a week, so obviously all is not well. But I’m not feeling as bad, so I think things are starting to slowly but surely move in the right direction. At least, that’s what I’m telling myself. And while I may never be able to really eat dairy or gluten again, since those seem to be pretty big triggers for me, I’m hopeful that when my gut heals up someday, I can perhaps tolerate small amounts of almonds or cane sugar or xanthan gum. (I miss baked goods!!)
By the way, in case you’re wondering why I share so much about my gut health, it’s largely because I have blog readers I don’t know, and it occurred to me that if any of them were struggling with similar issues, this might be of some help to them. I know firsthand that the medical community just likes to dismiss this kind of thing, but it’s really quite debilitating. I feel good that I’m at least taking an active role in trying to heal myself. And someday, I will manage to do it! Or so I tell myself…
After my naturopath appointment, Sam and I had lunch with Auntie Jeanette, who happened to be in a nearby town visiting a rail yard. She aspires to ride the rails someday, jumping onto boxcars as a way to see the country. Ha ha, kidding–she’s an environmental something-or-other (sorry, Jeanette, I don’t know your official title!), and she was working on some project with a local rail yard. Anyway, we met and had some Mexican food for lunch, which was a nice way to spend Friday afternoon! And because we only had one child with us (instead of three), we could actually talk. Imagine that!
The other fun event this week was Theo’s visit to his kindergarten class. His kindergarten teacher invited us to bring him in for a visit, as a way to start the transition process for him. He has a rough time with transitions, so we’re trying to prepare him ahead of time, and she thought it would be a great way for him to have some idea of what’s in store for him come August. We went for a cutting-and-pasting activity that a parent volunteer was doing with the kindergartners while the teacher did a language-arts lesson with the first-graders, and it was a lot of fun. Teacher Amanda even got a sub for her class so she could join us, as she wanted to be there so she could talk to Theo about the class and such. He did great–he was visibly a bit nervous, but he held it together and participated very well. And he was oh-so-proud of himself for going! And I was so proud of him that I again stopped at Starbucks to let him have a treat. Again, I told him he could have apple juice or chocolate soy milk, and this time he marched up to the cashier and said, “Hi. I would like a chocolate soy milk, please, with 30 pumps of chocolate. And no whipped cream.” HA! The normal chocolate soy milk has, I believe, three pumps of chocolate, so 30 would be just a bit much! I laughed and told the cashier that just the normal amount of chocolate was fine, and Theo said, “Hey, but I like a lot of pumps! Why can’t I get a lot? Auntie Lynnie does!” True enough–Auntie Lynnie does like a lot of pumps in her drink! But I still wasn’t about to get him all hyped up on mass quantities of chocolate before preschool!
Before I wrap up, I want to do something I meant to do last week, on Mother’s Day, but I forgot. I want to take a moment to reflect on why I love these three guys who I spend my days with. So here goes nothing! I’ll start with the birthday boy…
I love Chris because he makes me laugh. He gets my sense of humor and has a similar one himself. And I love him because of how he treats everyone with the most kindness and respect I’ve ever seen. In fact, that was when I realized I was in love with him–watching him interact with a vendor at the farmer’s market. He just goes out of his way to treat everyone kindly and as if they are interesting and worthy of his time, and it’s probably my favorite thing about him. Chris doesn’t just dismiss people–he takes the time to stop and say, “How’s your day?” And he really wants to know. I love that about him. And I love him because he tolerates my dogs–and even kinda likes them now and then. And I love him because our kids aren’t necessarily easy (okay, one in particular who shall remain nameless can be quite a handful), but he tries so, so hard to do the best by them–to be a good father. Neither he nor I is a perfect parent, but we try. And perhaps most of all, I love Chris because he always, always has my back. He may not always agree with me, and there are times when I have to say, “Back me up–this is important to me!” But he will do it, without question–even when it’s hard for him. I love him for that.
And now Theo. I love Theo because he makes me laugh. (Hey, same first thing as I said about Chris!) He is hilarious, and I love that. I love him because he is creative and fun and smart as a whip. I love him because even though he’s not naturally the most affectionate child, he will sometimes out of the blue say he loves me. Or every once in a while he’ll walk up and plant a kiss on my arm. I love him because, like his dad, he has a wonderfully kind heart. And perhaps what I love most about him is how very, very devoted he is to his little brother. He just loves Sam with a fierce devotion I’ve never seen and never would’ve expected. I love that part of him probably most of all.
And now my little Sam. I love Sam for his boundless joy. He can be a cranky, cranky baby sometimes, but when he is happy…oh, he is so very, very happy. I love his mischievous streak that is so much like his big brother’s. He has little games he plays that I love to no end. When he’s hungry, he will purposefully thump on my chest and then look at me like, “Well? C’mon lady–open up the diner!” And when he starts to get bored and look around more than eat and I sit him up, he howls angrily at me and I say, “Sam! You cannot have unfettered access to the bosom at all times!” and he breaks into a mile-wide grin and starts giggling. It’s his game, you see–we have to do it every time. And I love his newest game, where he is sitting there playing with toys, and he will suddenly crawl over to my lap, launch himself onto me, bury his face in my lap and start giggling like crazy, waiting for me to rub his back. And perhaps most of all, I love Sam for how he has changed my life–how he has enabled me to stop sweating the small stuff and just focus on the now. How he has made me realize, as cliché as it sounds, what is reallyimportant. How he has taught me to take joy in the very littlest things. And I love his melt-into-you hugs–I can’t get enough of those.
So there you go–a week late, in appreciation of Mother’s Day, that is why I love these three guys that I live with. I’ve had a few people recently comment that I have quite a lot on my plate–that my life must be rather challenging. Well, sort of…but whose isn’t? We all have challenges, and mine aren’t necessarily any more or any less than the next person’s–just different. But overall, I’ve got it pretty good because I’m surrounded by three pretty awesome guys! 🙂
MAY 12, 2013: HAPPY MOTHER’S DAY!
Brace yourselves–this may be a long post, as we had a lot going on this week, and brevity is never my strong point. But here goes nothing….
We kicked off the busy week with Sam’s first modeling gig! Early Tuesday morning (6 a.m., to be precise), Sam and I set out for San Francisco. It’s only 30 miles away and our call time was at 9 a.m., but traffic can be absolutely hideous around here, so I figured better to go early and just hang out and get some coffee. So we did–we got into the city around 7:30 a.m., found a Starbucks, and I had coffee while “the talent,” as I like to call him, ate a lovely breakfast of pureed meat. Ha! The studio was in a “transitional” part of town near the shipping docks, but there was plenty of parking and plenty of people around, so all was well. I found a spot two blocks away, and Sam and I strolled over at 9:00.
It turns out they were shooting video on Tuesday, so there’s a possibility that Sam may be featured in a commercial to be shown on cable TV, on the company’s website, and on YouTube. It was actually a really good experience. The only other modeling gig we’ve been to was a “go see” for Old Navy, and evidently he didn’t get that job. But it wasn’t the best experience–the people working the “go see” were pleasant and fine, but the other mothers were kind of like the “mean girl” variety, making pointed comments about the other babies and such. I wasn’t overly fond of them. This time around, though, the crew and the other parents were all great–very down-to-earth and friendly, and there was no pressure at all. Sam was kind of cranky because the shoot started two hours late, so by the time they got to him, he was tired and hungry. But he managed a few smiles, and all was well. He basically spent 20 minutes playing with bubbles and balls and earned what I earn in 60 hours of work. I’m not joking! I really need to rethink my line of work, eh?!
They also had a pretty amazing-looking spread of food that they kept encouraging us to eat, and I kept demurring and finally just said, “I really appreciate it, but I have crazy food allergies. I’d better not….” I figured no one needed a rundown on my exact GI problems, but I didn’t want to appear rude! Allergies seemed a safe and easy explanation, so I went with that. It did look mighty tasty, though–I was drooling!
They invited us back on Thursday for a shoot for their print advertising, and that didn’t go as well. Everyone was super nice and there was again no pressure at all, but Sam was in a mood, and none of us could coax a smile out of him. Not that I blame him–he’s cutting what I think is a molar, and he’s kind of a crabby mess. He gets paid for the day either way, but I doubt we’ll be seeing him in their print ads. Ah well…
But about that tooth! I’m not sure what tooth it is, but I know it’s near the back. Could be a bicuspid or could be a molar. Whatever it is, it’s huge. Seriously–massive. I don’t remember seeing one this big in Theo’s mouth, but maybe it’s because Sam’s mouth is very small, so the tooth just looks bigger in there. Anyway, some weeks ago he cut two top teeth–one on each side of his mouth. Or so I thought. On Tuesday, after the modeling shoot, I got a peek in his mouth, where I expected to see a fourth new tooth pushing through. But no–instead, there was a tooth spike sticking out of the middle of his hard palate! What?! Why did he have a tooth growing out of the roof of his mouth??? I finally figured out that it wasn’t an entirely new tooth–it’s a second “spike” of the one that started coming in weeks ago. But it’s so far inward from the first “spike” that there’s a huge amount of gum/palate between the two “spikes,” and the rest of the tooth needs to break through all of that. Seriously–the gap between the two “spikes” is about the size of a pencil eraser. OUCH! He has to rip through all of that? No wonder why the poor guy is in a lousy mood! I would be, too. And sadly, I’d almost guarantee that the same thing will happen on the left side of his mouth as soon as this right one finishes busting through, because it appears that tooth #3, which started to erupt weeks ago, is the match to tooth #2, which is the double-spiked menace that is currently giving him grief.
Here’s the weirdest thing, though–for the past four days, he has actually slept better than he has in nine months! You’d think he’d be up all night with that beast coming through, but he’s actually sleeping for longer stretches! Go figure… I’m under no illusion that this will last (I’ve gotten my hopes dashed before), but it’s nice while it’s happening.
In between Sam’s two modeling shoots, we had Theo’s yearly IEP meeting on Wednesday. This was an…interesting…day. Theo woke up in the middle of the night with diarrhea, and I thought it was just a touch of food poisoning. He hadn’t been eating much for days and was kind of docile but didn’t seem sick other than that. On Wednesday morning, though, he came downstairs, asked why the stairs were “wobbling and wobbling,” climbed onto the couch, and went back to sleep. Obviously, no school for him. Sam, meanwhile, had a nose like a leaky faucet, so I was covered in snot from him wiping it on me. Delightful! When Theo woke up around 8 (from his nap on the couch), he immediately started demanding to go to school and arguing with me that he was fine, and that he did not want to eat the bland BRAT (bananas, rice, applesauce, and toast) diet. No, he wanted bacon! Needless to say, that didn’t happen. After attempting to reason with him and getting argued with at every turn, I announced flatly, “You’re eating the BRAT diet today. End of discussion.” And sounded very much like my father, I’m sure–ha!
Anyway, Chris’s parents were nice enough to come up and watch the boys for us so we could go to the IEP together. That was really nice because usually I do all of the boys’ school and therapy stuff on my own, and it was nice to have Chris with me for once! I was a little nervous about the IEP meeting because everyone says they’re awful and you have to fight the school district for everything, but it turned out to be a very good experience. IEP, in case you’re wondering, stands for individual education plan, and it’s where we meet with Theo’s teachers, principals, etc. to determine his needs for the upcoming year. So, our meeting included Chris and me, Theo’s current teacher (Amanda), Theo’s OT through the school district (Leslie), Theo’s social skills teacher (Dr. Lio), Theo’s kindergarten teacher (Mrs. Jacobson–we hadn’t met her before), and Theo’s new principal when he starts at Cornerstone (and I can’t remember her name). Amanda led the meeting, and as I said, it was very, very positive. She, Leslie, and Dr. Lio shared their assessments of Theo as a student and as an individual with Mrs. Jacobson and the principal, and they seemed very receptive about everything and very interested to meet Theo. In fact, Mrs. Jacobson suggested that we bring Theo in for a class visit in the next couple of weeks, so she can meet him and he can get to see his classroom. Amanda is going to join us for that, and I think it’s going to be a great way for Theo to get to visualize where he’ll be next year.
Most of what we discussed had to do with Theo’s difficulty with transitions and what we could do to make this big transition to a new school go smoothly. We barely discussed academics at all because, lucky for Theo, that’s not an issue for him. He tested at or above grade level in everything–in fact, in the math assessments, he was often in the age 6 to 7 range. We also discussed Theo’s social skills, and that was pretty neat because I haven’t gotten to talk to Dr. Lio, and I honestly had no idea what his thoughts were. Amanda is fantastic about keeping me apprised of Theo’s progress, but he only sees Dr. Lio once a week, and I never get to talk to Dr. Lio. But I had lately been thinking that Theo was probably just about done with social skills. He seems kind of bored with it, and when we see him at the park with other kids, he’s verycomfortable and sociable–in fact, he’s often one of the friendliest kids there. So I was curious to hear what Dr. Lio had to say. As it turns out, when I broached the subject of Theo being done with social-skills class, Dr. Lio sheepishly said, “Oh yeah–he could’ve been done months ago. I kept him in the class because he’s my model for the other kids–he’s the example of what I want them to learn! He’s just such a nice little boy. I can’t wait to see how he’s going to do with kids who are more his peers. I think he’s going to do fantastic!” As you can imagine, Chris and I were delighted to hear that!
We also got a good laugh when Leslie, Theo’s OT at school, described Theo’s task-avoidance strategies. The biggest things Theo struggles with right now are transitions and fine-motor tasks. He’s still delayed on fine-motor skills, and he doesn’t like doing fine-motor tasks (probably largely because they’re difficult for him). And when Theo finds something challenging, he either goofs off or, more often, asks a bazillion questions to try to distract the person in charge. So Leslie gave the example of asking him to do a coloring task, and he apparently saw something new in the OT room and said, “Hey, what’s that? Where did you get it? Did you buy it off of Amazon.com? Do you have Prime shipping?” Everyone got a good laugh out of that–what five-year-old knows about Amazon Prime shipping?!
Anyway, we left the meeting feeling very, very optimistic. It was Chris’s first visit to Cornerstone, and he agreed with me that the physical environment looks very good for Theo–the classroom is small and not visually overstimulating. And his teacher, Mrs. Jacobson, seems great–our initial impression is of an unflappable woman who is warm and kind…but who also won’t take any of Theo’s crap. Because yes, our boy can certainly dish it out when he wants to! Amanda, whose opinion we value highly, felt really good after meeting his teacher, too–she thinks Theo is going to do well in the class. So, it remains to be seen, obviously, but we’re feeling good right now!
Theo will have a shadow aide for the first 10 weeks or so of school…but he won’t know it. The shadow aide is going to be introduced to the students as a “classroom helper,” and it won’t be obvious that she’s primarily there to help Theo. And, if Theo doesn’t need much help, she’ll be helping the other kids in the class with whatever they need. Mrs. Jacobson was delighted with this arrangement, as it means an extra set of hands in the classroom for the first several weeks! And we were delighted that the shadow aide will truly be a shadow–no one will know that she’s specifically for Theo (including Theo!), so he won’t forever be branded as “that weird kid in kindergarten who needed an aide.”
Speaking of school, my teaching career restarts on Tuesday, and I’m very excited! This online teaching is a whole new adventure for me, but I’m really looking forward to it. Even if the book they are having me teach is full of errors, which is really pretty awful given that it’s an editingtextbook! Perhaps my students’ final can be to correct the textbook. 😉
We had a big weekend, too! On Saturday, Theo had soccer in the morning, and then we went to an event for special-needs kids at a farm out in Brentwood (an hour east of here). The Lions Club puts on this event every year, apparently, and Theo’s teacher gave us a flier and told us we might be interested. I’m so glad we ended up going! You have to RSVP, as they limit the number of attendees, and assuming you RSVP in time, the entire event is free for your family. (You have to have a special-needs kid, obviously.) They had all kinds of free food, though we didn’t eat any (other than a snowcone for Theo) because Theo was still recovering from a second round of tummy trouble and Chris was feeling sick from his first round (which is still going on–poor guy! Perhaps it wasn’t food poisoning for Theo after all). And I can’t eat anything due to my tummy issues, so we pretty much fasted. But anyway, if you couldeat, there was all sorts of free goodies for you. And they had motorcycle rides for the kids, which Theo really enjoyed. And a petting zoo, bouncy houses, face painting, a fire truck, tons of booths with games and prizes, a hay ride, a play area with play structures, and a karaoke stage. As it turns out, we ran into Theo’s best friend, Gavin, there, much to Theo’s delight. And of course, Theo had to do karaoke. Hands down, the bestpart of the day was watching Theo and Gavin take to the stage to perform a rousing rendition of the AC/DC hard-rock classic, “Back in Black.” It was hilarious. There were about 150 people watching, and they were cracking up! Gavin didn’t know the words, but he was up there singing his heart out, making up lyrics as he went. And Theo was oddly quieter (probably because he was working on a lollipop while performing), but he would let loose with a hard-rock shriek (“Heeeeeeyyyyy! I’m Back in Black!!!!”) every so often and then start dancing like crazy. A few people actually laughed so hard they cried. It was totally awesome. 🙂 I’ll post a very short video clip on the Still More Videos page, although I wasn’t filming for the best of the performance. Still, you can get the idea. And you might want to cover your ears–they weren’t in tune or in time with each other! But oh, did they have fun!!
On Sunday, for Mother’s Day, Chris took Sam at 5 a.m. (his usual wakeup time…yawn…) so I could go back to sleep. I slept until 8–bliss! Then I went downstairs to investigate why Sam was squalling–and Chris was clearly torturing the child by offering him his favorite pureed meat. I picked Sam up, nursed him, and he promptly fell asleep on my lap, which he never does anymore. So I got to have the snuggle-bug napping on me for an hour, which was kind of a nice treat for Mother’s Day! Meanwhile, Chris made me a yummy breakfast of scrambled eggs with bacon, kale, and hashbrowns. Delicious! And from Chris and the boys I got two dozen long-stemmed roses (wow! I must’ve done something right this year!!) and a pair of earrings with amethyst and cubic zirconia in them, for each of the boys’ birthstones. (Theo is a diamond, but diamonds aren’t in our budget at the moment–ouch!)
After Sleeping Beauty woke up, we all went to the Bay Area Discovery Museum, where Theo played hard for three hours and Sam napped on me. Sam was like a narcoleptic today–he kept falling asleep! But by the end of the day, that wicked tooth had ripped through significantly more of his gums, so I think maybe sleep was his body’s way of giving him a break from the pain. And I enjoyed the cuddle time, as he snuggled in the Ergo. I also spied an adorable little guy with Down syndrome at the museum and got to talk to his parents. Turns out he’s four years old, and he was just having a ball! I love seeing “buddies” around–does my heart good!
Can’t say we had any tasty lunch or dinner to celebrate the day–Chris is feeling pretty gross, and he was a trooper to even leave the house! So I treated myself to Starbucks instead. 🙂 And as soon as I wrap up this blog, I’m going to go heat up some leftover stir-fry and enjoy that for my dinner. Happy Mother’s Day, all!
MAY 5, 2013: HAPPY CINCO DE MAYO!
Happy Cinco de Mayo, all! I’m posting the blog early this week because we’ve got a big day on Sunday, and I suspect I won’t have time to work on it Sunday night. In case you’re wondering, on Sunday we start out the day with a play date for Theo–we’re meeting his BFF Gavin at the park. And then we’re heading up to Elk Grove to visit Grandma Diane for the day. I suspect we’ll get back in the early evening, but I may not be ambitious enough to work on the blog, so I’ll just put it up today instead!
We started out the week with a visit to the eye doctor for Theo. He didn’t do too well on his eye exam during his five-year checkup last week, so his pediatrician suggested we take him to the optometrist, just to make sure he doesn’t need glasses. As it turns out, he doesn’t…yet. Currently, his vision problems are age-appropriate. She suspects he’ll probably need glasses around age 8, but not yet. Fair enough. Theo was very nervous about the appointment, but he did great–so as a reward, I took him to Starbucks afterward. (This was an entirely selfless act–there was no tasty coffee drink in it for me, I swear. Ha!!) I told him he could get an apple juice or a chocolate soy milk, and he strode up to the counter and said to the cashier, “Hi! I would like a chocolate soy milk, please! Yes ice!! No whipped cream. And no gluten, please.” The guy behind us started laughing and said, “Did he just order it with no gluten? That’s awesome!!” Theo then turned to me and said solicitously, “Would you like a decaf soy mocha, Mommy?” When I said that I would, he replied, “Okay, I think we can get you one.” I don’t know when I’ve had such a polite little coffee date! The cashier was utterly charmed by him.
Afterward, it was time for Theo to go to preschool, and Sam took a short nap before he and I headed out to get his pictures taken. My friend Roxann has just started working at JC Penney portrait studio–she’s interesting in pursuing photography and wants to get her feet wet in a studio before deciding whether to go out on her own. She was doing training sessions on Monday and said we’d get three free sheets of pictures if I brought Sam in for a sitting. Well, who am I to turn down free pictures?! So I headed down with Sam, who was a wonderful little model despite having a 100-degree fever. (I didn’t know he had that high of a fever when we left–he always runs warm, so I didn’t think anything of it. But he was a bit warmer than usual, and when I checked, he was at 100 degrees. Ooops!)
Roxann got some great pictures of Sam, so I’m very excited! I ordered a few extra prints, and I’ll share some of my favorites in this week’s album. (I had to take screenshots of them from the website, though–Penney’s won’t let you download them. So a few may have weird bits included in them in the album.) Funny thing is, Roxann said, “I can’t believe his modeling agency hasn’t used him yet. He’s such a great model!” I commented something to the effect of it being their loss…and then that very afternoon, I got an email from his agency saying Gymboree was interested in using him for a shoot for a print and video ad for their Play and Music classes. Go figure! (The shoot is on Tuesday, by the way–he did get hired! This will be his first real job–I’m kind of excited to see what it’s like! And kudos to Gymboree for using special-needs kids in their ad–LOVE it!)
The other funny thing about Sam’s pix is that I posted one on Facebook, and I tagged Roxann in the post. For those of you not on Facebook, that means that not only can my friends see the picture, but Roxann’s friends can, too. And I got a comment on the picture from someone named Danielle. I just figured it was one of Roxann’s friends–and it is. But here’s the weird part: My friend, Lisa, emailed me and said, “This is weird–that Danielle who commented on Sam’s picture is my brother’s ex-girlfriend!” Come to find out that Danielle and Roxann have been friends since middle school (in San Diego), and Lisa’s brother and Danielle dated for like six years (also in San Diego, where he moved to go to college). And weirder still, Lisa’s brother, Chris, went to Roxann and Mike’s wedding 10 years ago! How small of a world is that?!
On Tuesday, I went to the naturopath for a follow-up visit. I had been on a regimen for about two months and had seen some improvement, but not as much as I had hoped. So, I went back for a recheck. Honestly, I wasn’t sure how much improvement I should be expecting. But the naturopath looked rather aghast when I told her the frequency at which I was still getting sick and said, “Oh, no no no. You should’ve been feelingmuch better by now. Let’s try something else.” So her thought is that the heavy doses of probiotics were too much for my system–that the inflammation is worse than she thought. Part of the reason she thinks this is that I dropped 8 pounds almost immediately after cutting out sugar. She said sugar is inflammatory, and when people lose a lot of weight quickly after cutting it out, it’s usually because they had extra water weight from combatting inflammation. So we’ve switched gears and are focusing on bringing down the inflammation, with a milder dose of probiotics. And she ran a series of food-sensitivity tests so we can try to determine what I’m eating that is causing the inflammation to persist. Because I can go a few days feeling fine, and then wham!—I’m hit with another nasty bout of it. It feels like something I’m eating is triggering it–but what? I’m barely eating anything anymore, so what could it be?? Hopefully, the tests will show. I’m half expecting it to be something really common and benign, like, I don’t know, carrots or something. Something completely unexpected. Who knows, though?
I was feeling awful about spending the money on the tests–they’re reallyexpensive. I swear the naturopath has a $500 cover charge every time you walk in the door! (Nah, she doesn’t–but seriously, I have yet to walk out of the office for less than $300, and our insurance doesn’t cover a penny of it.) But then Chris pointed something out to me–number one, Kaiser (our insurance/medical group) wouldn’t take me seriously about the problems I’m having, and they’ve gotten to the point that they reallyinterfere with my life. And number two, even if Kaiser would take me seriously, they’d likely just treat the symptoms with steroids or something. (Kaiser is great about some things, but with others they are “quick fix” specialists–just seem to do whatever will patch you up quickly, without looking into the underlying cause.) So we’re spending a fortune on the naturopath, but at least she’s really trying to figure out the underlying problem so I can get a permanent fix–and without being on nasty steroids to do it.
So anyway, I’ve been sick seven times in the last four days and amreally ready to be feeling better. I have a quick trip planned to see Auntie Lisa in early June, and I’m going to be mortified if I spend the whole weekend in her bathroom, getting sick! And beyond that, I’m due to start teaching in person in October, and I’ll be doubly mortified if I have to race out of class to get sick! At least Auntie Lisa has known me since I was five and is a forgiving audience!
And so, that is the state of my gut. Improved over a few months ago, but not great yet….
Speaking of general health, Sam and I went to the chiropractor this week. I had tweaked my back and neck getting Sam out of the crib, so a chiro visit was a welcome relief. (I swear my chiropractor has magical hands!) Sam is in surprisingly good alignment for a baby who just started crawling and has been practicing a lot! I expected his hips to be rather out of whack, but they weren’t. An interesting thing that occurred to me: Most babies with Down syndrome take quite a while to learn the typical “four-point” crawl (that is, the crawl you see most typical babies doing). Most scoot or army-crawl for quite a while before they master the four-point crawl, if they ever do (much to their PT’s chagrin). But Sam went straight to four-point crawling, which was quite a surprise…and now I’m wondering whether it’s because we keep him in good alignment with regular visits to the chiropractor. There’s no way to know, but it’s just a thought that occurred to me, because we were very surprised to see him go straight to typical crawling! Anyway, whatever the reason, it’s good for his motor development and strength to four-point crawl, so we’re very happy about that!
I realize this blog is so far a lot about health, which is rather boring, but I have one more health-related bit to relate, and then I’ll move on. Sam had his second appointment with the feeding therapist at Kaiser this week, and it was a bit of a dismal failure. I had tried to integrate all of her suggestions from our last visit, with only very little success…and in fact, his feeding issues seemed to be getting worse, not better. At his feeding appointment, he was typical Sam–wailing and fussing and refusing to eat. His therapist gave up after trying a few different tactics and said, “I think we need to do a GI consult for him. He looks uncomfortable to me. I need to rule out any physiological problems here before we move on.” So, I guess he’ll be seeing a GI doc. I don’t really know what that involves, but I hope it’s not tests that will be uncomfortable for him! They already did a quick swallow study on him, but she said they didn’t check for reflux or peristalsis problems, so those may be what they look into. I guess they just assume reflux based on symptoms, but they can actually test to see for sure whether it’s happening–and they didn’t do that for Sam. We took him off his reflux meds about a month ago, and he’s been spitting up a lot less–maybe 5-6 times a day instead of 15-20–but the therapist is wondering whether he’s still having reflux issues, even though the spitting up is improved off the meds.
To be honest, I’m not sure I think they’re going to find anything physiologically “wrong”–Sam’s OT thought his feeding issues were probably due to oral-sensory issues, which are very common in kids with DS. But the feeding therapist is concerned, and this is her area of specialty, so I’ll go along with it and see the GI doc. And I guess we’ll decide about what tests to do after we see him. I really don’t want to put Sam through an uncomfortable test…but I suppose if there’s good reason to believe he has some condition causing him discomfort when he eats, I might not have a choice. I think I’ll know more after we meet with the GI doc and I can ask some questions about what, if anything, they suspect, how it would be treated, and what we’d need to do to find out.
For the moment, we have completely changed our course of action. The feeding techniques she had showed me weren’t very successful, and after a second session with him, she feels strongly that he’s not ready for anything other than purees yet. So we’re not supposed to feed him anything chunky or in pieces–just purees. We can still let him gum on something like a hard pretzel, but we’re not supposed to give him small chunks of food to try–she says he’s just not ready for it yet. And we’re trying to get him back on a bottle at her advice, which has been a colossal flop so far. She says she normally would never advise putting a kid back on the bottle at 15 months, but he won’t even allow a straw cup anywhere near him now, or a sippy cup, and she wants us to be able to get liquid into him some other way than breast-feeding if we can. Her bottom line is nutrition–he hasn’t gained any weight in three months, and he’s slipped on the growth charts from the 48th percentile (on the Down syndrome charts) to the 31st percentile. Kids typically slow way down in weight gain after a year, so it’s not a major concern…but still, he should’ve put on at least something—even if it’s just a couple of ounces.
I voiced to her my concern that perhaps my breastmilk isn’t nutritious enough for him, and she agreed that was a possibility given my health. Now, I know breastfeeding advocates will say, “Hogwash! Breastmilk is the perfect food–it contains everything a baby needs!” And normally, I would agree. But my health has been a wreck since I had Sam–I’m sick frequently, and I keep thinking that if I am getting physically sick at least once a week (often several times a week), am I really retaining all of the nutrients I need for me, much less Sam? I don’t digest anything correctly anymore, so how am I possibly taking in the nutrients I should? And if I’m not, could I possibly be supplying them to Sam? I know they say the mother’s body will give to the baby first, and that may be the case, but I can’t shake the nagging feeling that if my nutritional health is suffering, maybe I’m in turn not passing enough on to Sam.
And, on a purely selfish note, I wonder if weaning Sam would help me regain my own health. Chris had brought that up a few times and I brushed him off, saying, “I don’t know how breastfeeding could impact my digestive health.” But then I was talking to Sam’s PT, and she mentioned that after her third child, she had terrible health problems. Hers were different from mine, but the story is the same–she just couldnot get her health under control for 18 months after having her third child. And then she weaned her third child at 18 months…and started to regain her health. And so, selfishly, I wonder if weaning Sam could help me, too. Because an unhealthy mama isn’t a great mama, I’ve got to tell you. I try, but it’s hard to raise the boys when I’m getting sick so frequently….
So, the plan for Sam is purees, purees, and more purees–and a GI consult and trying to get him to take a bottle. We’ll see how much success we have with that.
Finally moving on from topics of health, I had a neat experience on Wednesday! You might recall that last week I talked about going to a park in San Carlos and meeting some people from a group for developmentally delayed adults. I gave one of the women my email address, because she is supposed to send me some information about an upcoming special-needs event. Evidently, she looked at the “@snydereditorial.com” part of my email address and decided to do a little sleuthing about snydereditorial.com. She found our blog, apparently. On Wednesday, I got an email from a woman who works at a pediatrics office on the Peninsula, and she introduced herself and said she had gotten a link to our blog from a woman with the PARCA group (the group we met in the park) who was so taken with the blog that she passed the URL along. And this woman, Barbara, asked my permission to share the blog with some of their clients who have children with challenges. She said she found my stories really uplifting and thought that other parents would find some comfort in reading them. I was really touched!! I keep this blog as just a sort of newsletter for our friends and family, since we have them spread all over. I had a feeling some other people read it, because some weeks I get up to 100 hits on the blog, and I certainly don’t know 100 people! But I have no idea who the other readers are…and I honestly didn’t expect it to appeal to an audience outside of family and friends. I read a lot of blogs, and the ones with mass appeal are typically the ones that focus on a single topic or a couple of topics, rather than the ones that are just family blogs. Ours is definitely a family blog, so I’m surprised anyone else has interest in. But, I’m very flattered–and very glad to be able to offer something to other members of the special-needs community!
Anyway, I’m about to wrap up for the week, but I’ll just share our Saturday events before I do. We had soccer Saturday morning, of course–and Theo actually finally seemed to “get” the idea of the scrimmage, so that was fun to see. And then we headed to Pleasanton for a kids’ rodeo at a small ranch–every year they do a little rodeo for kids with special needs. We were supposed to meet up with Beth, Ray, Ian, and Zoe there, but Ian was sick, so they weren’t able to make it. So we went on our own, and it was fun. Hot as blazes, though, so we didn’t stay long–just about an hour. It was neat to see a lot of other kids with DS there, as well as kids with other special needs. And Theo got to visit all of the animals and have a ranch-hand lunch!
I was cranky because I was hot and exhausted (Sam had a horrendousnight of sleep the night before…just when I think his sleep can’t suck anymore, it takes a turn for the worse), so when we left, I told Chris we could go anywhere that wasn’t horrendously hot. He chose to drive over the Bay to a park near his office where you can watch the airplanes taking off from the airport, since he knows I love airplanes. This park also features a “wind harp”–a giant sculpture that makes a musical sound when the wind blows through it. All that’s there is the wind harp and a couple of benches–no playground–so we had the place to ourselves. And it was a nice place to have a picnic. The funniest part was watching Sam repeatedly try to steal Theo’s french fries! I took waytoo many pictures of that–I like to call the series of shots “Pesky Little Brother.” 🙂
Anyway, I get sick everywhere I eat now–even gluten-free places–so I was feeling rather disheartened about eating anything, but Chris convinced me to try a baked potato from Wendy’s. It’s a baked potato, he said–how bad can it be? And you know what? It may be fast food and lousy for you in general, but it’s now five hours later, and I haven’t gotten sick yet. And that’s saying something! So all hail the Wendy’s baked potato, which is currently still residing in my gut!
On that delightful note, I bid you adieu for the week, and we’ll chat again next week. Wish Sam luck on his photo shoot for Gymboree, and wish us luck with Theo’s IEP meeting on Wednesday!
APR 28, 2013: LOCOMOTION!
So, remember that last week I said that Sam had his six-month assessment from the Regional Center, and that it wasn’t too bad because I already knew his “scores” from his therapists? Well, one slightly depressing part was that his locomotion score was the 2nd percentile. That means 98% of babies Sam’s age have better locomotion skills than he does. Not really surprising…but not overly cheery either.
BUT! BUT! BUT! Six days later, he started crawling!!! Which will undoubtedly bump up that pesky locomotion score!!! He’s only crawling a maximum of two “steps” at a time, and most of the time he just relies on his old method of pivoting on his bottom and then stretching way out to reach things…but the point is that he can do it! And I’ll put the video proof on the Still More Videos page, if you’d like to see it. We are so excited!!! Not sure when he’ll actually start crawling on a regular basis, but at least we know he can do it now! It’s funny–not only did it take him a long time to learn how to crawl, but I’ve realized it’s likely to take a long time for him to start doing it consistently. With Theo, once he figured out crawling, there was no stopping him. But Sam is much more slow and deliberate in his actions. I think that’s probably partly due to low muscle tone and partly due to the sheer physical effort it takes Sam to do things (which is also tied to that low tone). One thing Sam loves to do is push buttons, but it’s interesting to watch him do it, because he’s much more slow and precise about it than Theo was. Like most babies, Theo would just jab at buttons quickly. But Sam will carefully position his pointer finger and slowly and carefully lower it to gently press whatever button he wants. It’s almost like watching a careful ballet move or something–it’s all very calculated and slow and deliberate with Sam. I actually find it rather fun to watch–poetry in motion or something!
In other developmental news for Sam, he also cut his third tooth this past week. That’s three within a month–ouch! He now has one bottom tooth right in the front and two top teeth–one on each side of his mouth, behind the canines. (He would kind of look like a vampire if you could see them when he smiles, but I think they’re a bit too far back.)
As long as I’m on the subject of developments, Sam and Theo both had “well child” checks at the doctor this week–Theo’s five-year and Sam’s 15-month. Theo sailed through his–the only thing of note is a nasty bout of eczema that we’re treating with some cortisone cream. Also, he struggled with the eye exam, so I’m taking him to the optometrist for a full eye exam tomorrow. His vision tested as 20/32, and his pediatrician said they normally don’t worry until it gets to 20/40, but because he was visibly struggling to read the chart, she thought it would be best for us to have it checked. If he needs glasses, I shudder to think of the costs of replacing them each time he breaks or loses them. He’s not a careless child, but he is a five-year-old boy, so…you know…bull-in-a-china-shop kind of thing!
Sam’s visit went fine overall, though it was a little more in-depth. We’re headed back to audiology to try again for a hearing/fluid check. Those have been a bust in the past, but it’s time to try again. Sam is way behind developmentally on speech, and the thought is that it may be due to fluid in his ears (very common in kids with DS). Sam hasn’t gained any weight since his 12-month checkup–in fact, he’s down a bit because he was sick at Easter and lost a pound. So he’s 18 pounds on the nose, which puts him around the 25th percentile for weight on the Down syndrome charts (and nowhere near even placing on the typical charts). In other words, our Small guy is still a very Small guy. Just for fun, I looked up Theo’s stats at the same age–he was 23 pounds 4 ounces at the same age.
I’m a bit surprised that Sam hasn’t gained weight, because even though he has feeding difficulties, he eats a lot. He breastfeeds multiple times during the day and night, and he eats three meals of purees a day. And he will only eat meat and veggies from me (Chris can occasionally get him to eat fruit, but he won’t do it for me), so we’re talking six to eight containers of meat and veggies every day. And yet he’s not gaining. Hmmm…
Sam’s bloodwork came back on Saturday morning, so I haven’t gotten to hear from his pediatrician, but the numbers are a bit wonky. Not as wonky as last time, but still wonky. Which is weird–last time, his pediatrician said they were probably odd because he had an ear infection. But this time, I had his ears checked and they’re fine–so why the wonky numbers? From what I understand, the high red blood cell and platelet count isn’t all that unusual in Down syndrome, and the unusual width of his red blood cells can be a pre-anemia thing. He’s still low on iron, so I’m guessing that explains the signs of pre-anemia. I’m surprised that he’s still low on iron, though. He’s been on an iron supplement for three months now (which he hates to take, but we can usually get at least part of a dose in him each day), and he eats meat and vegetables for every meal. Plus, he’s still breast-feeding. And his iron count did come up a good amount–it’s just still a bit low. Weird.
But what troubles me is his white blood cells. They flip-flopped from last time (12 months)–the type of WBC that was too high last time is now too low, and the type that was too low last time is now too high. From what I read, that is usually due to a bacterial infection…but where’s the infection? Apparently not in his ears, since she checked those. He’s also been running a very low-grade fever for weeks (as he often does–about 99.4), and he keeps getting that same rash he gets when he’s sick. So I feel like he must be fighting something off…but what?? I’m kind of baffled…and a little worried. But I’m trying not to fret and stew. Down syndrome comes with some medical weirdness, and maybe this is just some of that weirdness. I don’t know. I’d just feel better with some nice, normal bloodwork, you know??
I do wonder, though, if that’s why he’s still not sleeping. Low iron can supposedly cause restlessness and sleeplessness, and if you’re fighting off some sort of infection, you generally feel kind of lousy, so…who knows. Maybe I’m just grasping at straws…
In non-medical news, we had Theo’s Open House for school this week–such fun! We got to see some of the work he has done in class, and we got to meet a lot of the parents. I was really glad to get to meet Gavin’s parents, because Theo talks about Gavin all the time, and his teacher said they have really buddied up at school. I was really proud of Theo when Gavin’s mom told me, “Gavin just loves Theo–he said Theo protects him.” Awwww! Theo has told me that when Gavin gets hurt, he “gives him a hug and a kiss,” but it was neat to hear from Gavin’s mom that he apparently is a little protector for his friend.
My big excitement for the week was my technology training for UC Berkeley Extension! The class I’m teaching starts in two weeks, so I went in to be trained on their online class system, Angel. I could’ve done the training over the phone, but I felt like I’d probably absorb it better in person–plus, I was excited to get to talk to grown-ups! The first conversation I had on Friday morning started with, “Mom, why are there so many boogers in my nose?” And while this is a fascinating, thought-provoking question, the thought of having a conversation that didn’trevolve around boogers was quite appealing! So, I went in on Friday and got to meet the people who hired me and have my training in person. My class is already full–20 students are enrolled! And they have already hired me to teach another online section in the fall, plus an in-person section. (Yes, I’ll get to talk to grown-ups face to face, once a week! Conversations about real things–not about poop and boogers! I’mvery excited! I’ll have to give up my Saturday mornings with Chris and the boys, which is kind of a bummer, but I think I’ll enjoy teaching an in-person class again!)
Anyway, the people at UCBE seem really nice, and the Angel system isn’t nearly as confusing as it looked at first glance. I’m really excited to get started!
The funny part of Friday was that for years I’ve been wearing the same few pairs of “mom jeans”–that is, loose, unflattering jeans that scream, “I’m a mom and I have no fashion sense.” But hey, they fit, and they were inexpensive. I can’t stand spending a lot of money on clothes, so “cheap” and “it fits” are pretty much my two criteria when shopping. Anyway, I recently found a pair of jeans that fit those criteria but were also actually cute–form-fitting and not necessarily “mom jeans.” So I bought them, and I decided to wear them for my training. I put them on, feeling pretty good about myself, and went to say goodbye to Chris and Sam (Theo was at school). Chris looked at me and said calmly, “You have spit-up on your jeans.”
“No, I don’t!” I replied.
“Yes, you do,” he said. “Right there.”
I looked to where he was pointing and informed him that it was not spit-up; rather, it was a cute little worn patch on the jeans to designate these as cute, stylish jeans, not mom jeans. He started laughing and said, “Oh, I thought you just had spit-up on your pants.” Which is a logical assumption, given that I often have spit-up on my pants. But clearly my cute jeans, which I was so proud of, simply look like spit-up jeans!!
We had a nice weekend overall. Saturday morning was soccer, and Theo managed to stay on the correct field while playing this time–progress!! And after soccer, we headed over to the other side of the bay to visit an air museum that we had a coupon for. However, the best laid plans went somewhat awry, starting with lunch. By the time we made it across the bay and over to San Carlos, it was lunchtime. I can eat at very, very few restaurants, so we decided to go to Chipotle. I’ve gotten pretty good about narrowing down what won’t make me sick there. Plus, it’s not very expensive, and Theo always likes Mexican food. Only one problem–Chipotle was packed. Absolutely packed. The line was 25 people deep. Insane. So instead, Chris and Theo ate at Jamba Juice, and I just ate the small bag of nuts I had in my diaper bag. I was hungry and slightly cranky, especially because I had to sit on the ground at the edge of the parking lot to feed Sam–some teenagers had taken all of the spare chairs outside and didn’t have the courtesy to give one up, so I sat on the concrete and tried to feed Sam, which was uncomfortable at best. And Jamba doesn’t have many gluten-free options for food, so we had to give Theo a soft pretzel–full of gluten. That didn’t really help his ability to cooperate, so we decided that perhaps the air museum would be better another day. Instead, we’d just go to a park. We were a bit frustrated, having driven across the bay and fought traffic for…a trip to Jamba Juice and a park, which we could’ve done five minutes from our house! But, why waste our coupon on a day when we knew Theo was probably going to have a rough time, and we’d probably just end up leaving the museum?
So we attempted to find a park we like nearby…but ended up driving way out of our way to the wrong one! We finally made it to the one we wanted, feeling rather hot, hungry, and frustrated. But, we got out and soldiered on…and I’m glad we did, because the day got much better from that point on. Chris followed Theo over to the playground to watch him play, and I sat on a blanket with Sam in the shade and spied on a group of people nearby. It appeared to be a group of people with Down syndrome, but I wasn’t 100% certain, and I didn’t know how to politely walk up and say, “Excuse me, do you possess an extra chromosome? So does my son!” So I just kept watching and trying to gather up the courage to go over and say hi. It appeared to be some sort of big event. Finally, a woman with a therapy dog (a Newfoundland–beautiful!!) walked by and commented on how cute Sam was, and I saw my chance and asked her what the event was. Turns out it’s a group for developmentally disabled adults! They had mostly packed up and gone by that point, but two of the coordinators were still there, packing up tables and chairs, and she dragged me over and introduced me and Sam. I ended up having a great conversation with both women, who scolded me and said, “You should’ve come over and said hi!” when I told them I had been watching the group but wasn’t sure how to approach them. One of the woman had her son still there, and she introduced me to him. He has Down syndrome and is 29 years old, and he was wearing a name tag that said, “Gruppy Bear.” (Yes, that was the spelling.) I said, “Well, I’m sure your name isn’t really Grumpy Bear–what is it?” and he said, with a straight face, “Darth Maul” (from the Star Wars films). I started laughing, and his mom did, too. Turns out his name is Scott, and his mom later told me he doesn’t like to let on how smart he really is. Ha! I bet it serves him well to keep that little nugget hidden. Anyway, Darth Maul/”Gruppy” Bear wanted to take my picture with Sam, so of course I obliged, and then he had to show me a picture of him hugging a girl with Down syndrome. His mom prompted him: “Who is that, Scotty?” and he announced, “She kisses me!” His mom laughed and said, “But why does she kiss you? Who is she?” As you can guess, it’s his girlfriend–and he was quite proud to show me her picture. I said, “Ohhhh, she’s awfully pretty!” and he got a big grin on his face and nodded enthusiastically. It was really neat to get to talk to him–I meet a lot of babies and kids with DS, but I don’t often get to chat with adults. It made my day. 🙂
Theo ended up playing at the park for a couple of hours, and we were all in a much better mood when we left! So our crazy, messed-up day ended up being quite good after all.
We had a change of plans Sunday, too. We intended to go to the Oakland Zoo, as we have a membership there, and it’s much cooler than where we are. (The temp was supposed to hit 86 near us today.) But Sam fell asleep 15 minutes from the zoo, and we didn’t want to wake him, so we decided to drive over the bay again and go to the San Francisco Zoo. We hadn’t been there in a while, and it was a nice day once the fog burned off. For the first time, Theo actually really looked at the animals. In the past, he’d usually race quickly from one exhibit to the next, not really paying much attention, but this time he actually spent a little time looking at each animal, which was neat. And evidently he can read the word “lovebird,” because he pointed out an exhibit and said, “Look! It says there’s lovebirds over there!” This is noteworthy only because that’s not a word I think he ever would’ve come across before now, and it tells me he’s really starting to read. He can read a ton of words, but many are ones I know he’s seen at school or on a sign or something–words you see everywhere, like “Safeway” and “stop” and “Target” and “school” and things like that. But increasingly often now, he’ll read a word that I can’t think where he would’ve seen it, like “lovebird,” and I’ll scratch my head and think, “Is he really reading?” I think he might be….
On a similar note, I’m sure I’ve mentioned Theo’s great love of elevators. I realized this morning that he is really knowledgeable about them! He thinks the elevator at Kaiser is a Schindler (which it may be–I don’t know because the plaque is worn out, so you can’t read it). So this morning, he said, “Kaiser has a Schindler elevator.” I murmured, “Mmmhmmm,” or something, and he looked up and said, “But why does it have Dover buttons, then?” I said, “What do Dover buttons look like?” He replied, “They’re circles.” I said, “Oh. Then what do Schindler buttons look like?” He said, “They’re kind of like the buttons on my piano. They’re silver–sometimes there’s a silver call button.” I concluded that the Kaiser elevator must be a Dover elevator if it has Dover buttons, but I was kind of amazed that he knows enough about different models of elevators to question his own assumption that it was a Schindler. That child never ceases to amaze me….
Anyway, it’s getting late and I must wrap this up. Happy end of April, everyone–May will be here so soon!
APR 21, 2013: GRATEFUL
Hi all. This week’s blog title comes from how I’m feeling: grateful. In a week where I’ve heard about several tragedies, I’m grateful to have my little family healthy and intact, and my larger family and friends all well and healthy.
I follow a number of blogs, many of which are related to the special-needs community. One that I recently started following, called Chasing Rainbows, is written by an unbelievably positive woman who, with her husband, has endured so many difficulties in creating her family that it would render a less strong person a complete mess. Her oldest living child, age 5, has an unspecified chromosomal abnormality and a number of health issues, but he has been healthy as of late. Or he was until last week, when he suddenly fell ill and passed away, completely unexpectedly. This happens more times than I’m comfortable with in the special-needs community–seemingly healthy children get some random strange illness and die. Frankly, it terrifies me. It makes me want to pull my kids into a little bubble and never let them go. My heart breaks for this woman–her posts about her son’s death were nothing short of absolutely heartbreaking. And yet good came from the tragedy–it was very important to her and her husband that their son’s organs be donated. His liver was, unfortunately, unusable, but his kidneys were transplanted into a man who had been waiting for a kidney transplant. This has given the little boy’s mother and father a lot of comfort, and obviously it is a blessing for the recipient, so that makes the situation a little easier to comprehend. A little. But the bottom line is still that their beloved son died–literally one day he was fine, the next he was gone. Terrifying.
And then, of course, there was the tragedy at the Boston Marathon. Which was bad enough all around, but it particularly hit home because I know people who narrowly missed it. You’ve heard me mention Auntie Lisa a million times on this blog–she is my oldest friend. We met in kindergarten, and we grew up together. I spent so many nights at her house, and of course I know both of her parents very well. Her dad, Seto, was running in the Boston Marathon…and Lisa, Chris, and Cason were in Boston to cheer him on. On Monday morning, I was lucky enough to find out early on that Lisa, Chris, and Cason were okay, but it was a couple of hours until we heard whether her dad was okay. (He is, thank god!) All we knew was that he had been scheduled to cross the finish line at around 4 hours and 15 minutes…and the bombs went off at 4 hours and 9 minutes. So Jeanette (who also knows Seto very well, having spent many days and nights at Lisa’s house when we were all in middle school and high school) and I thought he was probably okay–but we weren’t sure. We were terrified for Seto and for Lisa and the rest of her family…and it was also a kick in the gut to both of us. I lost my dad almost 17 years ago. Jeanette lost her dad just a few months ago. The three of us grew up as close as sisters, and Lisa’s dad is the only one of the dads left. Something about that just feels…well, like he needs to be here. There can’t be no dads left in our little group. It’s just not right. So Jeanette and I spent a couple of hours on Monday texting back and forth, waiting to hear from Lisa about Seto. And, thank god, he is fine. They stopped the race right in front of him and took him and about 100 other runners to some sort of holding area for a while. He was a few blocks away from the finish line when the bombs went off–and Lisa, Chris, and Cason were just one block from the bombs when they went off. In fact, they had been headed toward the site of the second bomb to cheer Seto on as he ran past on his way to the finish line…but thanks to a toddler tantrum and a required cupcake stop, they were running late. So I give thanks for toddler tantrums and the necessity of cupcakes!!
And so…gratitude. I feel such gratitude that everyone I know and love is safe and healthy. Because really, that’s what matters, right? Not any of the little stuff that seeps into my daily life, like the sleepless nights, the frustration over IFSPs (Sam’s “treatment plan” for the next year), and so on. We’re all healthy and we’re all here. And I’m grateful.
Anyway… As I mentioned, Sam got his yearly evaluation for his IFSP this week. And it went fine, really–I already knew his development scores and such from his therapists, so there were no surprises. His caseworker from Regional Center basically said, “I’m really sorry about the feeding therapy. I hate that they no longer provide it, but my hands are tied.” That said, Sam needs a new Infant Development Specialist, because our beloved Christina is leaving Easter Seals to focus on her own practice, and Sam’s Regional Center caseworker, knowing my concerns about feeding, made it a point to find a new IDS for Sam who is not only an OT (as Christina is), but also has some experience in sensory-integration and feeding therapy! So this is a very good thing, and I’m happy about it. He should start with her in early May. We’re sad to lose Christina, but I’m glad her practice is going so well, and I’m glad our new IDS may be able to offer help on feeding.
Speaking of Sam, he’s almost crawling. His PT thinks it may happen sometime in the next week. I’m not sure whether that will be the case, but it should be sometime soon. He easily gets on his hands and knees now and launches himself forward, belly-flopping on the carpet. And then he stretches as far as he can to reach his intended target. So all he has to do is figure out how to take more than one crawling “step,” rather than just belly-flopping onto his tummy. And then I shall baby-proof in earnest. 🙂
Speaking of “steps,” we had Baby Steps class this week! It was a big group with two new babies this month, and oh, they were so cute! One was 11 weeks and the other was 12 weeks (one boy, one girl withfabulous black hair standing straight up like Don King’s!), and they were just adorable! Plus, Sam’s compadres Declan (16 months) and Otto (17 months) were there, crawling like crazy and hopefully inspiring Sam. And there was a three-year-old named Melanie who completely cracked me up! She was so busy taking toys from the babies–but not to be possessive! No, instead, she was redistributing them quite generously. She’d take a toy from a baby, hand it to the next baby, and then bring a different toy to the baby she had just taken a toy from. She spent the better part of an hour doing this, and it was quite funny to see the looks on the babies’ faces (including Sam’s): “Hey, why did you take my toy? And why did you give me this one? I don’t want this one–I want my other one back!” And merrily she went along, redistributing toys. I got such a kick out of her!
And, while we’re still speaking of Sam, he’s showing signs of communicating more with me! On Saturday, he was overtired and crabby, which means all he wanted to do was nurse. But he’d nurse for a second, then pull off and mess around…repeatedly. So I finally sat him up and said, “Okay, you’re done. You don’t need anymore milk right now!” And he looked right at me and signed “more” and gave me a big grin! I cracked up!! He also signed “more” when he was eating lunch today, which was very cool. I’ve been letting him watch “Baby Signing Time” a few times a week (yes, yes…screen time…so shoot me!), and he has gotten to really enjoy it. He gets all excited when it comes on–especially the milk segment (are we surprised?!) and the animal segment. They really are cute videos, and I’ve heard babies pick up a TON of sign language from them.
On a completely different topic, I realize I haven’t talked much about Chris’s and my professional lives lately. Chris just got signed on to head up a major deliverable on a drug for lung cancer. Apparently he should plan on not taking any time off between September and April–it’s thatbig of a project. That makes us happy because it sounds like good job security. 🙂 We rarely travel in the fall/winter anyway, so no big deal. We’re spending one week in Cambria (in the same little house we rented last year) in late August, so that will be our last hurrah before his big project starts.
And in case you’re wondering how a week-long vacation was in the budget, given the fact that I lost my biggest client, it’s because (a) we tightened our budget way down, (b) it’s a relatively inexpensive vacation because the house rental is quite reasonable and we can eat most of our meals at home that way, thus saving $$ on food, and (c) I managed to pick up some other clients to fill in the gap. They aren’t going to bring in as much as I was getting before, I don’t think, but they’ll fill in enough that, combined with our budget cuts, we can make it work. And actually, I’m kind of enjoying the change of pace. I did a small project for the celebrity/fluff online-content provider last month, and it was kind of fun. I’m doing a lot of education articles for another online-content provider. I did a massive proofreading project (800 pages on server architecture–thrilling!) a couple of weeks ago for another new client. And UC Berkeley Extension has offered me two more classes to teach in the fall–one online and one in-person (so I get to talk to grown-ups once a week–wheeeeeee!!!). I actually sort of like the change because, aside from UC Berkeley, my new clients all give me short-term jobs. For Cengage (the client who decided to outsource things to India), I always managed entire book projects. And that was really fulfilling to me on a professional level–I enjoyed working on the book from start to finish. But it required a commitment of anywhere from several months to several years per project, which is a bit challenging given that I have two young children right now, so I’m kind of glad to be filling in the gaps with clients who give me work in short little bursts. I might have to work like crazy for a week, but then the project is done and out of my hair. It’s kind of refreshing, really.
But enough about the boring adults–back to the kids! Chris and I finallyhad our interview with the small private school we were looking at for Theo. And it went well–the people were really nice, and I think they liked what we had to say as well. It seems like a good school. That said, it doesn’t seem any better than our other option: Cornerstone, the small enrichment school that is part of our public district. And Cornerstone has the advantages of being (a) free and (b) closer! It’ll still be a bit of a haul down to Cornerstone during traffic time, but less of a haul than if I was going all the way to the private school. So, since both schools seem like good places where Theo can potentially thrive, I think we’ll go with the free, closer option and give Cornerstone a try. Theo’s official IEP meeting is in early May, so nothing is set in stone, but I think that’s where we’re headed. And it feels good to finally have a decision!
Our weekend was fairly busy. We had soccer on Saturday morning, which was rather amusing. Theo has moved up from Tot Soccer to Pre-Soccer, and it’s the same idea as before (lots of fun games that are really skill-drills in disguise, with a short scrimmage at the end), but a bit more advanced. Theo does great during the skill-drills, but scrimmages baffle him a bit. He still hasn’t entirely figured out that he should actively pursue the ball…at least not on his own field. There are about 16 kids in the class, so the coaches split them into two fields–two scrimmages of four-on-four. This weekend, Theo was on the blue team, which was playing the red team. But twice in the middle of the game, he abruptly ran off of his field and onto the green-and-orange-teams field to join their scrimmage! Yup, my boy crashed an entirely different game–twice! 🙂 Oh well; he’ll get it. He has fun, and that’s what matters.
He’s also having great fun with his balance bike. We went out several afternoons this week for him to practice riding, and he loves it. It turns out there are some kids on the next street up, which happens to be a cul-de-sac with less traffic than our street, so I walk him up there to ride his bike, and he has a ball! In fact, he never wants to come home….
On Saturday afternoon, Mike, Roxann, and Tico came over to play games, and then we had dinner together. (It was supposed to be a BBQ, but our BBQ seems to have died, so…it was a pan-fry instead!) We played one complicated outer-space game, which I won only because Mike basically played my hand for me–it was ridiculously complicated, and I was totally lost! And we played a railroad game that Theo and Tico could join us for, which was a lot of fun. I lost that one, but at least I understood it!
Saturday night, Sam gave me one of the worst nights of sleep so far–he barely napped on Saturday (stubborn turkey!), and we got him to bed at 7 p.m. (his usual bedtime). But he woke up at 8:45, 11:00 (and I had justfallen asleep at 10:40…ouch!), 11:20, then from 1:00 to 3:00 (a two-hour party–I was dying!!), then 5:40, then 7:20. It was hideous. The child just doesn’t sleep. It’s been eight months. I’m pretty convinced he’s just never going to sleep. Which means I’m never going to sleep. I’m not even sure how I function some days. On Friday, I tried to make oatmeal for my breakfast and botched it twice–apparently, boiling oats for 12 minutes and then throwing in a handful of raisins and a sprinkle of cinnamon is too complicated for my sleep-deprived brain. Yawn…
Anyway, I was exhausted on Sunday, after that crappier-than-ever night of sleep, so Chris drove us to Scientopia in Napa while I sat like a lump and tried to stay awake. Sam, as you will see in the pictures, is all smiles. I was…existing….
We stopped at a park there that we like before heading home…and that wraps up our weekend! Hope you all had a pleasant one, too! By the way, sorry this week’s album is so Sam-centric. Theo was wearing a baseball cap for much of the day, which made it a bit difficult to get good pictures of him!
APR 14, 2012: PARTY LIKE A ROCKSTAR!
Well, people, we have officially survived throwing a child’s birthday party! Actually, it was a lot of fun…but I’m definitely tired now! We held Theo’s birthday party today, and I’ve pretty much been on the go since 7 a.m. (It’s now 8:30 p.m.!) So…yawn….
But I’m pleased to say that the party went well, and I think Theo really enjoyed it. We held it at one of our favorite parks right near our house. They have two nice play structures, lots of shade, gorgeous scenery, and reasonably decent bathrooms–what more could you ask for? Theo wanted a rock-and-roll party, so I brought his guitars, his CD player, and his microphone along and set up a little “rock out” area. Chris was in charge of making some kid-friendly rock-and-roll CDs, and he put quite a lot of time into picking out songs that qualified as rock but that didn’t have any questionable lyrics for little ears. Unfortunately, all that time spent was for naught, because he forgot to bring them to the park! So we just grabbed a rock CD of mine from the van and used that. Which was fine–Theo insisted on playing “Save Me San Francisco” (by Train) about a bazillion times, and that song is pretty tame. (I’m pretty sure the younger set have no idea what’s meant by the lyrics “I don’t know what I was on / But I think it grows in Oregon…” for example!)
I also brought along Theo’s scooter, his old tricycle, a soccer ball, Frisbee, baseball and bat…lots of goodies for the kids to play with. The kids all seemed to keep busy, between the playground and the activities, so I think it was a success. We had a good turnout, too! Auntie Jeanette and Justin came (and brought yummy side salads–thanks, Justin, for all your hard work in the kitchen–HA!); as well as Roxann and Tico; Aunt Tanya, Uncle Steve, and Nik (thanks for the BBQ services, Uncle Steve!); Jason, Maria, Caitlin, and Caleb; Bill, Sarah, Liam, and Logan (Liam was our only injury–he got a good smack on the head when he ran into a bar on the playground, poor guy!); and Beth, who likes to crash five-year-old parties. (Just kidding–Beth’s kids are Ian and Zoe, but Ian had a swim lesson today, and Zoe ended up getting sick. Liking to live on the edge, Beth snuck out, left the kiddos with Ray, and came to the party!)
We lucked out and got lovely weather, too. The wind picked up toward the end of the party and blew a bunch of our stuff around, but I can’t complain about the sunshine and lovely breeze for most of the day! At one point, the local cows came down the hill to the fence overlooking the park–Roxann said they came to give Chris the evil eye for making hamburgers. 😉
This wasn’t our only party of the weekend, though. We spent Saturday in San Jose at a 90th birthday party for Chris’s Grandma Norma! (Unfortunately, I forgot the camera–duh!) That party went great, too—they held it in the church rec room where Chris’s mom teaches. She teaches a small kindergarten class that happens to be held in a church, and there is a lovely little playground right outside, so the kids had a ball running around out there. Plus, the rec room was nice and wide open, with plenty of room for the kids to roam around. Theo had a great time playing with all the kiddos on that side of the family. And Sam was Mr. Charming, all smiles for most of the afternoon. Which was a bit of a surprise because I’m quite certain he’s working on another tooth, and he has been pretty grumpy because of it! (He wasn’t overly cheery at Theo’s party today, for example. Ah well–one party out of two ain’t bad!)
Speaking of Sam’s teeth, he cut his second tooth on Monday! This one is on the top left, behind the canine. I’m not sure whether it’s a molar or one of the teeth between the canines and the molars. But it’s poking through! However, I’m certain that Tooth #3 is on the way, too. He’s been jamming anything and everything WAY back on the right side of his mouth, but the tooth that came in Monday is on the left. And he’s still jamming everything up in the right, so I suspect we’ll see a third tooth pop through soon. Poor guy is getting them all at once, it seems!
As long as we’re on the subject of Sam’s mouth, let me say that I finallygot an appointment with a feeding therapist! And she’s willing to see Sam as often as I feel he needs it…with the catch being that she hasvery limited office hours. So it’ll probably be once every three weeks or so. But that’s better than nothing, so I’ll take it. I actually have the parent advocate at the Down Syndrome Connection trying to get us set up with more feeding therapy and a Medi-Cal waiver, but we’ll see what comes of that. In case you’re wondering about the Medi-Cal bit, it’s because Regional Center is making us go through our medical insurance to get Sam’s services wherever possible. Which is fine, but it means we’re liable for co-pays. And when you’re talking about weekly therapy for PT, OT, and hopefully ST (speech/feeding therapy), that is $60 in co-pays a week. Which is $240/month, in case you didn’t feel like doing the math. 😉 Our already tight budget can’t easily take another $240/month, and I’ve found out that we may be eligible to get Medi-Cal assistance to help with those co-pays. (Plus, I’ve heard that Medi-Cal will sometimes provide services when your regular insurance won’t, so maybe I’ll be able to get more feeding therapy for Sam that way.) So yes, we have health insurance–a nice plan through Chris’s work. And we’re very grateful for it! But the co-pays are going to kill our budget, so if there’s a way to minimize those, I definitely need to follow up on that. Sam is eligible, as a person with a “disability,” but given his age we need some sort of waiver. I don’t know–it’s complicated….
But I digress! Feeding therapy! The therapist we met with gave me several suggestions for helping Sam learn to manage solid foods and liquids better. After watching him eat and reading his history, she said she’s nearly certain that he’s been aspirating all along–that is, taking liquid into his lungs. But he hasn’t developed a lung infection because of the aspiration because what he’s taking in is largely breastmilk, and breastmilk won’t cause an immune response in the lungs. So it’s not great that he’s aspirating, but it’s much less of a problem because he’s breastfed.
Actually, I told her I wanted to start thinking about weaning him, and she advised against it. She said it’s going to take a while to get him eating and drinking well enough that he can get his nutritional needs met that way, and right now the breastmilk allows him to meet all of his nutritional needs even though he’s only eating limited foods and not drinking. And so, my body will continue to be his personal snackbar for a while longer. 😉
Her take on the drinking is that he’s smart enough to realize that when he drinks from a straw cup or sippy cup, he gets liquid in his airway. So now he doesn’t want anything to do with that–and who can blame him? So we just have to keep working with him on drinking through the straw until he realizes it’s not going to hurt him and starts doing it again. We use a “honey bear” cup, which is one of those plastic bears that honey comes in, and you just put a piece of plastic tubing through the top hole. That way, you can gently squeeze the bear to get a little liquid into his mouth when he won’t suck it himself. And in theory, if we keep squeezing little amounts in, he’ll eventually decide that it’s not so bad and that he can handle small amounts of liquid. It’s tricky, though, because most of the time he won’t even let the straw come near him–he pushes it away.
As for eating solids, she watched him eat and said his tongue isn’t moving from side to side well enough to manage solid foods. She said, “Imagine if someone put a piece of food on your tongue, but you could only move it forward and back–not side to side. How would you get that food over to the side of your mouth to chew it? You couldn’t…and so you’d just choke on it.” Makes sense, really. So, she gave me some tricks to try to help train Sam’s tongue to sweep food over to the sides of his mouth.
I made a follow-up appointment for her next opening–in three weeks. So until then, we’ll keep working on it.
And as long as I’m on the subject of food: cupcakes! Theo celebrated his birthday with his school friends on Monday. I made rock-and-roll cupcakes with sprayed silver icing and little plastic electric guitars on top and brought them to his class. They were a hit! It was really fun to get to see Theo and his little pals enjoy them. Wish I had taken a picture of the cupcakes–they turned out really cute, if I do say so myself.
Last but not least, I had a realization this week. Sam is 14 months old, and I do a lot with him. But when Theo was around this age (not much older), I started Little Gym with him. And it was so much fun–it was my favorite part of the week, because even though Theo never wanted to participate with the group (should’ve been a red flag, eh?), he lovedgoing to Little Gym, and we always had fun. And I realized that I hadn’t even thought about doing anything like that with Sam. And it made me really sad to realize that. I do so much with Sam, but it’s nearly all therapy-based. And I realized that I wanted to something normal with him–something just for fun, and something that anyone would do with their typical child. I don’t want the “fun” things I do with Sam to all be some sort of therapy or Down syndrome–related things. That’s all well and good, but his entire life shouldn’t consist of events related to a condition he has. He deserves all the fun “normal” stuff, too. And you know what? So do I. I deserve to go to a little mommy-and-me tot class with him just like I did with Theo. Because I loved that. So, I signed us up for a free trial class at MyGym (which is like Little Gym). If we like it, it’s $20/week, but one of my new clients pays me by the piece, and I can do as much work as I like, so I’ve decided I will edit four extra articles per week for that client, and that’s where the $20 will come from to pay for MyGym. And Sam and I will get to have our little piece of “normal.” Well, really it’s not entirely normal, because I signed him up for the baby class–7 to 12 months old. The next class up (12-18 months) assumes the kids are walking, and Sam isn’t even crawling yet, so…yeah. That’s not going to work. Anyway, I’m hoping it doesn’t make me feel sad to see kids much younger than him doing things he can’t yet. I’ll just have to suck it up and deal with it if it does, I guess. And really, I think it is going to be good for Sam to see other babies doing things like crawling. I’ve heard from many mothers who have a child with DS and then a younger typical child that the child with DS becomes much more motivated to work on motor skills when he sees what the other kids are doing. So…we’ll see what we think. What I have no doubt about is that Sam will charm the pants off of everyone in the class. He has that effect on people. 🙂
Speaking of Sam and skills, he did meet two new milestones this week! One is uncovering a covered-up toy. His OT and I have been working on that one on and off for a while now, and he got it this week! The second one is getting from a tummy position into a sitting position–BIG milestone!! The story of how we learned he did it is rather funny, too. I worked insane hours this week, as I took on a giant proofreading project for a new client. So by Wednesday, I was fried and exhausted. Sam had been crabby all day and not napping (gotta love teething), and I finally got him down to bed and was able to finish up that day’s work by 9:00 p.m. Chris and I like Modern Family, so we sat down to watch Modern Family while we ate our dinner. About 20 minutes into the episode, I hear Sam start wailing over the monitor. After having a momentary pity party where I complained about not even being able to sit for 30 minutes and enjoy my dinner and a TV show, I stomped upstairs to see what Sam was fussing about now. I had put a new fuzzy crib sheet on that day, having read that many babies like the softness, and he hated it, so I asked Chris to follow me up with the dirty cotton crib sheet (which was waiting to be washed) and put the darn thing back on his crib so he’d stop belly-aching about the new sheet. We walked into the bedroom, which was dark, and I couldn’t see Sam’s little form in the crib. Yet I could hear him wailing. So I turned on the flashlight on my phone…and found Sam sitting up in the corner of his crib, mad as a wet hen that he’d managed to get himself into a sitting position!! The look on his face was priceless–he was furious!! Anyway, we got him settled back down, took off the blasted velour sheet and put the old one back on, and I went to bed shortly thereafter…too tired to fight it anymore.
But, for your viewing pleasure, I’m going to post a short video that includes Sam showing off his sitting-up skills! Go to the Still More Videos page to see it!
And that pretty much sums up our week! Next week we have Sam’s yearly evaluation with the Regional Center (joy…sigh…) and an interview with a private school we’re looking at for Theo. Should have lots to tell next week!
APR 7, 2013: HAPPY 5TH BIRTHDAY, THEO!!
Well, what do you know? We have a five-year-old in the house!! That’s right–Theo turned five on Friday! I have to say this, and you can think I’m horrible if you want: I am not sorry to say goodbye to the age of four. In some ways, it is a fun age–where your preschooler is become more grown up, with more of his own opinions and fun witticisms and ideas. But the never-ending sass and arguing just about killed me! Arguing just to argue, and taking the attitude that he’s just as grown up as we are…oy vey! I never thought the “terrible twos” were as much of a nightmare as people say, nor did I find the “tyrannical threes” bad. I mean, Theo is strong-willed and so always challenging, but those ages weren’t a particular challenge for us, compared to anything else. But four?? Oh, we’re lucky to have survived four! So I’m hoping five will bring with it a mellower disposition and less arguing! Some of his arguments are quite inventive and downright funny, but at the end of the day, I won’t be sorry when there are fewer of them!
Anyway, the other big news this week is that I survived Spring Break! Theo was pretty feisty most of the week–I think probably because he didn’t have his normal school routine, which he thrives on. But we all survived…and actually had a pretty fun week when it was all said and done.
We kicked off the week with a trip to the Lawrence Hall of Science to meet Roxann and Tico. Which would’ve been a great idea except that it was Spring Break and lousy weather, so everyone was there! They have a wonderful new temporary exhibit on movement, but it was hard to get to do anything because there were so many other kids there. We’ll have to go back, though–Theo enjoyed what he did get to do, including snowboarding (virtually, of course), going on a human centrifuge, going on a spinning chair that demonstrated how different arm positions make you spin slower or faster, etc. And actually, for all my complaining about age four, Theo was a trooper about not getting to do a lot of activities and not being able to get the French fries I had promised him for lunch. (The cafeteria was a madhouse, so we just went outside and ate the snacks I had packed…without the fries I had promised him.) In fact, he was so good about it that I stopped at his favorite Target on the way home and got him some fries there, since I needed to pick up a couple of things anyway. That Target happens to have a cafeteria that overlooks the elevator, escalators, and cart escalator (which is a really cool device, if you haven’t seen one), so I got us a table overlooking all of that, and Theo was in seventh heaven with his fries and his excellent view of the escalators and elevator. 🙂
On Tuesday, Theo had OT and then we checked out a new park, which was fun. It’s a fully accessible park for kids with disabilities, but it’s really just a neat park for any kid. Theo had a good time, and we had a lovely teachable moment–“lovely” meaning that I was mortified but recovered enough to seize the teachable moment. Theo has just recently started to notice physical differences in people. And so, a very large man was at the park, watching his kids play, and right as we walked by him, Theo said, “Wow, that man is very big, Mommy! Are you big like that man?” There’s no way the man didn’t hear him. I just replied, “Yep! He’s a grown-up like me–we’re both grown-ups!”–obviously substituting “grown-up” for the meaning of “big” that Theo really intended. And when we got to the car, I talked to him about how saying someone is “big” would hurt their feelings, because most people who are heavy don’twant to be heavy, and it makes them sad if you talk about. I also told him I used to be very heavy, and it hurt my feelings when people talked about it. So I told him the next time he sees a person and notices something different about them, instead of saying what’s different, why not just say “hi” to the person? He looked like he understood…and two days later, when he saw another heavy person, I could see the wheels turning in his head as he looked at her and said, “Hi”–and then turned to me and said, “Mommy, I said hi to her!” I was really glad that he listened to and understood what I was trying to tell him. I know all kids go through this stage, where they notice differences and just innocently remark about them, without any malice, but I would hate to see someone’s feelings hurt because of something Theo commented on.
Speaking of which, it’s a good thing my sister has a thick skin! We went up to Elk Grove to visit Grandma Diane, Auntie Lynnie, and cousins Noelle and Stevie on Thursday, and at lunch, Theo was staring intently at my sister’s face. She finally said, “I notice you keep looking at my face, Theo…” and he calmly replied, “What are those things on your eyes?” She figured out that he meant her eyebrows, and she explained that she draws her eyebrows in with pencil because she doesn’t have many real eyebrows. Theo isn’t very used to makeup on women because I never wear it (okay, maybe once a year…), so he was rather fascinated by my sister’s eye makeup. She said, “Do you not like my eyebrows?” and he said, “No. Could you not wear those next time?” The conversation continued, and I can’t remember all of the specifics, but he basically told her, politely but firmly, that he didn’t like her eyebrows, that they were a little bit scary, that he didn’t think he’d have those when he grew up, that her eyes looked “twisted,” and that he hoped she wouldn’t “wear those” next time! Luckily, my sister thought it was all very amusing and said she hoped he loved her anyway, despite her eyebrows, which he agreed that he did! It was actually pretty funny, because he wasn’t the least bit mean–just curious about why on earth she would be “wearing those!”
Theo lucked out in Elk Grove–he got birthday presents from Auntie Lynnie’s family and from Grandma Diane. Auntie Lynnie got him a little racetrack, and Grandma Diane got him a balance bike! We got Theo a regular bike with training wheels almost a year ago, and he does great with the training wheels but wants desperately to ride a two-wheeler. But when we tried to help him learn to ride with two wheels, it didn’t go well at all. He doesn’t understand that you need to go a certain speed and keep pedaling to keep the bike up, so he would just immediately tip over. And Theo doesn’t learn well by instruction–he learns by doing. Sotelling him that he needs to keep pedaling to stay up did no good–and he couldn’t learn it on his own because it just didn’t come intuitively. So I mentioned to my Mom that I thought he might do well with a balance bike, as I know quite a few kids who’ve learned to ride two-wheelers very quickly after getting a balance bike. So she decided she wanted him to have one for his birthday. And wow–he’s doing awesome! He’s used it for two days, and he has already figured out how to run along and lift up both feet so he coasts along on two wheels for a few seconds at a time! He is so proud of himself and keeps asking to ride his “walking bike” more and more!
Theo’s birthday presents from us were a fire station and a drum set. (Yes, we’re insane…) A little story behind both. Theo has recently learned to do imaginative play, which is wonderful! So we wanted to get him something to inspire imaginative play, and we thought, “Well, a dollhouse would be great, if we could find one that wasn’t so girly-girl that he would feel embarrassed by it later.” So we did a bit of research and found that Kidcraft makes a wonderful three-story wooden firehouse/dollhouse, and it even has a pole in it–Theo’s favorite thing! But the darn thing was over $100, and we certainly weren’t going to spend that. But in looking through Clayton Treasures (my little online group for swapping/selling stuff), I discovered someone in Walnut Creek selling the very fire station we wanted and all of its pieces…for a mere $30! So we jumped on it, and it’s been sitting in our garage for six weeks, just waiting for his birthday. He loves it! He even insisted on putting the firemen to bed in their bunkbed before we left the house yesterday. 🙂
The drums were another “no way–they cost too much” gift…until we saw them on clearance at Toys R Us about six weeks ago (same weekend we got the firehouse, actually). We picked them up and hid the box in the garage. We had no place to hide the built drum set from him, so we waited to build it until the night before his birthday, so he’d wake up and see them on his birthday. Can you guess where this is going? It was on clearance because someone had returned it–minus a bunch of pieces! So there we are at 11pm the night before his birthday, with an incomplete drum set. Crud. Too late to go exchange it… So we packed it back up, put it in the back of the van, and decided that we’d return it on the sly the next day and tell Theo that he could pick out one thing at Toys R Us as a second birthday present (since now he would only have the firehouse–still a very cool present, but we wanted him to have two gifts for his birthday).
I snuck into Toys R Us and returned the drums, and then we took the boys in and told Theo to pick out one thing he wanted. He wandered a couple of toy aisles and then found the musical-instrument aisle…where he promptly picked out the very same drum set we had just returned!Well, shoot–it was regular price, which was more than we wanted to spend, but he really wanted it. He’s been asking for a drum set for months now, and he was adamant that this was what he wanted as his second present. So we decided to splurge and get it (feeling very happy that the present we had originally picked out for him actually was exactly what he wanted–yay for our picking power, even if it ended up being a mess of missing pieces!). We got up to the register…and found out that it was on sale for the same price as the clearance one had been!Whew!!! What luck for us, eh?! So, the happy ending is that Theo got his drum set, we didn’t pay more than we wanted to, and we’ll be investing in earplugs very soon. 😉
Theo’s birthday was Friday, and Chris was able to take the day off work. We like to make birthdays very special, so we wracked our brains to think of what Theo would most enjoy doing. His latest obsession? Elevators (and escalators, though elevators are his favorite). So we decided we’d spend the day riding the best elevators we could find! A short BART ride into San Francisco, and we’d have elevators galore at our disposal. And what a fun day we had! Theo’s eyes lit up when he found out what we were going to do, and he was just an absolute prince all day long! After our BART ride, we started our journey at San Francisco Center (a shopping mall), where Theo was dying to go because his idol, Diesel Deucy, rides the curvy escalator at San Francisco Center in one video that Theo likes to watch. (Diesel Deucy is a trucker who lives in Virginia and films elevators all over and puts the videos on YouTube. They really are every bit as boring as they sound–videos of elevators and sometimes escalators. But Theo loves them–and he’s clearly not alone, as Diesel Deucy actually has thousands of views of these darn videos! Click here if you want to see a Diesel Deucy video to see what all of the hype is about. It’s a few minutes of your life that you’ll never get back….)
So we rode the curvy escalator up all eight floors, and the mall wasn’t very crowded, so we were able to let Theo go a few feet ahead of us on his own, so he felt like a big boy. He was just in his glory, greeting people and telling them he was five years old and riding elevators and escalators. It was really neat to see him being so sociable! Then we rode back down and went to our next stop: Union Square. We rode elevators and escalators in the Gap and H&M (clothing stores), and Theo chatted up everyone he saw. It cracked me up that he even personifies the elevators: “Here she comes! She’s a Schindler Hydraulic!” He was elated to get to ride Otis elevators, Schindlers, Westinghouses–we only missed Dovers. Then we headed over to the seven-story Macy’s and rode elevators there. We also ate lunch in the basement, and Theo and I rode the escalator many times with Sam on my back while Chris finished his lunch. (Chris fed Sam while I ate, so I was returning the favor.)
Next, we went to the St. Francis Hotel on Union Square. This is a fancy-schmancy hotel that has a 32-story tower. The older part of the hotel is 12 stories, and we rode that elevator, which Theo loved because it had the keypad with all of the floors on the outside of the elevator. Then we went to the 32-story tower and rode the glass elevator all the way to the top, where there’s a restaurant. My stomach churned as we rose 32 stories above the city, but what a view! (I just get nervous because of earthquakes–I keep wondering what would happen if we had a Big One while we were 32 floors up in a glass elevator on the outside of a building!)
Next, we walked a mile down to the bay, where we ended our Tour of Elevators at the Hyatt hotel near the waterfront. Chris and I stayed at that Hyatt for his birthday a couple of years ago, and they have a glass elevator inside the atrium of the hotel that goes up 14 stories. Actually, it goes up 17 stories, but you have to be a special guest of the hotel to access the last three stories. When we got to the lobby, two hotel workers were standing there, and they greeted us with, “Hello! Are you guests of the hotel?” I replied, “Not this time, though we’ve stayed here in the past. Today is my little boy’s fifth birthday, and he loves elevators, so we came to see your elevators.” One of the men got really excited and said, “Happy birthday!! I’m going to take you on the special tour!” So we got to ride the glass elevators to the 17th floor–woohoo! And then Jorge (the hotel man) decided he wanted to take us up farther, to the lounge at the top of the building. It used to be a revolving restaurant at the top of the building, but now they’ve stopped the revolution and just use it as a lounge for special guests of the hotel. It’s not open to the public–you have to have special access. And it is entirely glassed in, so you can walk around and get a 360-degree view of the city. So he took us up there, got us cookies for Theo’s birthday, offered us drinks, took our picture, and let us wander around enjoying the view while he told us all about the history of the restaurant/lounge. It was awesome! It’s amazing the nice people you can meet when you’re just out and about. It was a wonderful way to cap off Theo’s birthday Tour of Elevators.
We rode BART home, stopped at Toys R Us, where Theo picked out his drums, and then had dinner and cake. Theo wanted a Diesel Deucy cake–Diesel Deucy actually carries around a little rainbow-colored toy train on all of his elevator shoots, and so I intended to make a train-shaped cake from a train cake pan that Grandma Kathy and Papa got me a couple of years ago. But the cake pan is nowhere to be found! It must be hiding somewhere in our unopened boxes in the garage. So I ended up just making a round cake and hand-drawing a train on the cake and filling it in rainbow colors. Honestly, it’s a terrible drawing–I’m no artist. But Theo loved it! When people would ask him what he got for his birthday, he would say, “A Diesel Deucy cake!!” They, of course, had no idea what he was talking about, but I was glad that he was so excited by my lopsided cake. 🙂
On Saturday, we took the boys out to Davis to a park. We hadn’t been back to Davis (near Sacramento–where Chris lived when I met him) since we moved, and it just seemed like a good day for a ride. Plus, Davis has a lot of flat parks, and we wanted a flat place for Theo to ride his balance bike. What fun we had! We had a picnic lunch, Theo rode his balance bike and learned to coast on it, and we had fun on the playground. Sam was a little cranky…but more on that in a moment. On the way home, we stopped in Vacaville to meet a friend/colleague of mine, who I’ve worked with for 14 years. She has a farm, and she thought Theo would like to see her llamas, peacocks, and horses…plus, she has wanted to meet Sam. She had a brother with Down syndrome who passed away the day before she was born, so she never got to meet him. Sam wasn’t overly cheery, but he did grace her with a few smiles–and Theo warmed to Marian right away and interrogated her about a thousand different topics. 😉
I keep mentioning Sam being grumpy…and this is a very Theo-centric post. Truth is, Sam has been grumpy for about three weeks now–first because he was cutting a tooth, then because he had an ear infection, and now because…well, who knows? He has bad diarrhea from his antibiotics, so I’m sure that doesn’t make him particularly happy. And he’s probably still working on teeth. So, whatever the reason, he’s just kinda grumpy lately. But I’m sure my happy boy will return at some point…. And I apologize for neglecting Sam in this post, but because it’s Theo’s birthday, he gets most of the attention this week. 😉
My frustration of the week has been with Sam’s OT/PT/speech therapy services. You already know that everyone thinks Sam needs speech/feeding therapy, but no one wants to pay for it. Well, I got a call from a speech-therapy clinic on Wednesday, saying that Kaiser had approved him for weekly therapy and they wanted to set up an appointment. Really??? Awesome!!! I was delighted! Until Thursday, when the clinic called back and said, “Oh, Kaiser said that was a mistake. He’s not approved for therapy. We’re sorry. Apparently they approved him for physical therapy, not speech therapy.” Uh oh. Losing the speech therapy didn’t really surprise me, but what’s this about physical therapy?? Sam has been getting PT through the Regional Center, and we’re delighted with it–a therapist who we really like comes to the house once a week and works with him, free of charge to us. And he’s made a lot of progress since starting with her. So we don’t want him switched to Kaiser PT, which we’ll have to pay for and which will be at some clinic, rather than at our house. But alas, Kaiser has decided we should get it through them, so now I’ll be hauling Sam yet one more place each week…and paying for the privilege. I realize this doesn’t sound like a big deal, but if you could imagine how much I already have to shuttle the boys for various appointments, you’d know that running one more place each week is really quite a pain. Plus, it further messes with Sam’s naps, which I’ve worked very hard to get on a schedule! And the added copays add an additional $80 to our already very-tight budget. ARGH!
Kaiser also gave us a confusing song and dance about speech therapy and Sam’s occupational therapy, so I’m trying to sort through that mess, too. I’ll spare you the details, but let’s just say that I’m throwing up my hands and asking the parent advocate at the Down Syndrome Connection if she wants to help me out with understanding this bureaucratic nightmare. I can only imagine how much fun this will be when Sam transfers into the care of the school district at age three–I’m told the Regional Center is actually much easier to navigate than the school system. Good grief….
Anyway, enough on that. We capped off our week with a visit from Grandma Kathy and Papa. They came up and brought Theo his birthday present (a saxo-flute, which is a lovely shrill instrument–thanks for that, guys!! Ha!). Theo was excited to have them come over, and even grumpy Sam was pretty cheery for their visit! And now, I must go finish decorating rock-n-roll cupcakes for Theo’s birthday celebration with his preschool class tomorrow. Let’s hope they look as neat as I’m envisioning them…and far better than my lopsided Diesel Deucy cake!
MAR 31, 2013: HAPPY EASTER!
Happy Easter, all! I debated naming this blog “Mom of the Year Award,” since I feel like I’m really not earning that title this week, but I decided to go with the more universal Easter theme. 🙂
So why am I not Mom of the Year this week? Well, first of all, I didn’t color Easter eggs with Theo, and I feel really bad about that. I intended to do it Saturday afternoon/evening, when we returned from Sacramento (more on that in a moment), but we got back too late. So, the “Easter bunny” hid plastic eggs filled with candy but didn’t hide any traditional colored eggs. And honestly, Theo doesn’t know the difference…but I do, and I had looked forward to coloring them with him. Poop.
Also, I’m Lousy Mom of the Year because Sam has been cranky and tugging at his ear for days, and I chalked it up to teething…when in reality, he has an ear infection. Sigh… The dumb thing is, I said to Chris a few days ago, “He keeps tugging on his right ear, but I looked it up, and that’s a sign of teething. And he doesn’t have any more fever than usual (he almost always runs about 99.4 degrees), so I guess it’s just teething. But I keep wondering how I’d know if it was another ear infection, since the symptoms for both are the same.” So…you guessed it: another ear infection. Probably teething, too–he’s been chewing everything in sight, and I can see some whiteness in his gums that I suspect may be teeth starting to move up. But definitely an ear infection. I discovered this Easter morning, when I picked him up and discovered he felt hot. Took his temperature, and it was about 101 degrees. I figured we’d have to wait until Monday to see the doctor, but they actually had a pediatrician on duty today and told me to bring him in. It turned out to be his pediatrician, which is very cool because we really like her! So, I can think of far better ways to spend Easter than hanging out at Kaiser for two hours, but at least we got to see his pediatrician and we got him hooked up with yet another dose of antibiotics. (Given that antibiotics wreak havoc with digestive flora, I fear for that poor boy’s gut. This is his third round already in the 14 months he’s been out of the womb. In contrast, in Theo’s five years, he has never had to take antibiotics. Poop…poor Sam!)
Anyway, Chris took Theo down to see his parents for Easter, so all was not lost. (We had all planned to go, but obviously that plan had to change.) I have no pictures of that because, obviously, I wasn’t there. 🙂 I spent the day at Kaiser and doing some little odds and ends around the house. Oh, and buying Sam a Sophie the Teething Giraffe, because this seems to be the teething toy for kiddos, and my healthy dose of mommy guilt dictated that I would feel better about missing the darn ear infection if I bought him his very own Sophie. 😉
We did have a sort of nice Saturday. Chris had a fantasy baseball draft in Sacramento, so we all went up there, and the boys and I spent the day with Auntie Jeanette and Justin (age 18 months) while Chris did his baseball thing with the guys. I say “sort of nice” because Sam was quite fussy for most of the day, so although it was great to finally get to see Jeanette and Justin (who I hadn’t seen since before Christmas!), I was sort of tethered to a fussy baby who wanted to do nothing but nurse all day. We did manage to take a walk to the park in their neighborhood, and Sam took a snooze in the Ergo during that time, so that was fun. And Theo was elated by his birthday present from Auntie Jeanette, Uncle Brian, and Justin: a stand-up microphone! He was putting on concerts this morning for us–playing his electric guitar while performing at the microphone. I wish I could catch a good clip on video–he is too funny! He usually sings Journey or AC/DC songs (apparently he’s into ’80s and ’90s rock), and he gets really into his performances. He even has a big finale! Auntie Jeanette also got him a chapter book about a family who moves into an Otis elevator (that, appropriately, they name Otis) in a San Francisco hotel. I can’t wait to start reading that to him–I think it’s going to be really fun!
This week was otherwise relatively quiet. I did finally get word from Kaiser that they will give Sam one or two feeding-therapy sessions a month. All that lobbying and effort from me, and that’s what we get–one or two a month. It’s certainly better than nothing, and I won’t look a gift horse in the mouth, but I don’t think there’s anyone (other than the powers-that-be at Kaiser) who would tell you that once or twice a month is really enough. Sam has pretty significant delays on feeding, so I strongly believe that weekly therapy would be very beneficial. And his therapists agree–but of course, someone has to pay for weekly therapy, and no one wants to do that. So, we shall take the once or twice a month they’ve offered, and I guess we’ll just be happy that it wasn’t an outright denial.
On a similar note, I’ll apparently be breast-feeding Sam until he’s about 30 years old. Well, not really…but my original plan is rather foiled. I had wanted to nurse him through this cold and flu season…which should be over in another month or so. But there was a small problem with my plan: He doesn’t take a bottle, and he barely takes any liquid out of a straw cup or sippy cup (and what he does take, he often chokes on). So if I wean him, how do I keep him hydrated? Obviously, since he eats only purees, he gets some liquid in those…but probably not enough. Hmmm. And then the plot thickened (much like his liquids–HA!) when he started teething, because now he won’t even touch a straw or sippy cup, and he’s barely eating solids. (He’s actually lost a full pound…and given that he was only 18 pounds in the first place, that’s not too thrilling. Not worrisome, but not great–we need to keep an eye on it.) So now he’s really not getting any fluid except when he nurses.
So I guess I shall continue nursing him as we wait for him to get more willing to take liquids from a cup of some sort. (You know what would help with that? Feeding therapy! But apparently, he really doesn’t “need” feeding therapy…or so Kaiser tells me.) And it’s fine, really. In some ways, it’s more convenient to nurse him. For example, when I’m out and about with him, I have no way to feed him other than to nurse him. At this age with Theo, we could give him a cup of Cheerios or something and let him nibble on those. And we could certainly give him a bottle or a sippy cup of soy milk and let him fill up on that. But we can’t do either of those things with Sam, so when he gets hungry, I have two choices: Put him in the high chair and spend half an hour spoon-feeding him purees, or nurse him. The former option is easy to do when we’re at home–I do it at least three times a day (though lately he won’t eat–butusually I do it at least three times a day). But when we’re out and about, running to therapy appointments or school stuff for Theo, I’m really not able to pull over, set up a high chair, get out the purees, and start feeding him. I am, however, able to pull over, nurse him for five or ten minutes, and then continue on.
So really, nursing him is pretty convenient for me–and certainly healthy for him. I guess my one issue with it is just how it makes others feel. And really, I shouldn’t care. But I try not to make people feel uncomfortable, and the older he gets, the less comfortable people will feel with me whipping out my breast and feeding him. (I don’t/can’t use a nursing cover because he’s constantly flailing his arms and legs, much like Theo used to, and knocking the cover off. It’s more trouble than it’s worth. I do try to cover up as much as possible and be modest, but it’s still obvious what I’m doing…and in our society, some people aren’t overly comfortable with that, particularly when a child gets older. I’mokay with it…but is everyone around me? It’s just an odd situation to try to reconcile.) Anyway, one silver lining is that even though Sam is 14 months old, he looks like he’s about seven months old, so I don’t think most people have a clue how old he is, and they figure I’m just nursing an infant. See? I can find a silver lining in almost anything! 🙂 Anyway, if we’re hanging out and I suddenly nurse Sam and make you uncomfortable, I wholeheartedly apologize. Alas, I must feed the little guy somehow, and that seems to be the only workable solution until we get him doing better with solids and drinking from cups!
Side note: In case you’re curious, this isn’t just a Down syndrome thing. It’s true that kids with Down syndrome often have feeding issues, but not always. There are a couple of babies Sam’s age in our Baby Steps class, and I’ve seen them sit there and self-feed Cheerios out of a little dish, just like Theo used to do…and drink out of a straw/sippy cup on their own. So chances are that Sam is technically capable of it from a physical standpoint–he just doesn’t like to do it because of oral sensory issues (which are pretty common in babies/kids with DS). So it’s more aSam thing than a global Down syndrome thing….
But let’s move on for a moment from Sam to Theo! This was Theo’s last week of preschool before Spring Break, and we got some exciting news: We received his progress report, and he has met all of his IEP goals!You may recall that these are specific goals for Theo to work on that have to do with areas where he struggles–mostly, social situations and such. So they were things like, “Will be able to have a reciprocal, appropriate conversation with a peer three out of five times,” and “Will be able to participate in a group activity, such as Circle Time, three out of five times.” As you can see, they don’t expect perfection–only progress! No kid is going to do this stuff perfectly all of the time. But I’m proud to announce that Theo has made such great progress that he met all of his goals!!! Our next IEP meeting is in May, when we’ll set up new goals for his transition into kindergarten. The only note they made was that Theo sometimes needs reminding to socialize with his peers instead of adults, which doesn’t surprise me–I got the same note on my kindergarten progress report, as I recall! And Theo has always conversed very well with adults–it’s kids his own age that were more of a struggle for him. But he’s doing really well! And, in fact, he has a little best friend in his class, which I think is so neat: Gavin! Apparently, Theo and Gavin play together all of the time. They play hotel, and they make maps of their hotel, make cell-phone calls about it, make plans about the elevators (are we surprised?!), etc. Theo’s teacher said it’s a bit of an unusual game choice for kids of their age (well, yeah…), but the important thing is that they’re playing together and using their imagination. Wahoo!! And Theo talks about Gavin all the time–evidently, Gavin is at our house and eating breakfast with us some mornings. 😉 He also said that when Gavin falls on the playground, he gives him a big hug and a kiss!
The cynical side of me realizes that if he does this in elementary school, he could end up getting suspended for it–I’ve heard stories about kids being hit with “sexual harassment” for kissing a fellow student. But I’m not about to tell him not to do it at this point–we worked so hard to help him understand how to show empathy and feelings that I’m not about to ruin that by telling him not to comfort his hurt friend! If this ever becomes an issue wherever he goes to school, they can take it up with me. I willnot be amused if that happens! At the moment, I’m just delighted that he cares about his little friend. For a long time, Sam was the only one who elicited that kind of response from Theo, but now he’s branching out. I’m not about to stunt his progress!
Speaking of Theo, I’ve realized I’m on deck for three birthday treats for him! I need to make a cake for his actual birthday (this Friday). I also need to make cupcakes for his class (next Monday, when they’re back from Spring Break). And I need to make a cake for his birthday party (two weeks from today). So I finally figured out what to do for each. For his actual birthday, I’m going to make him a train cake, using a train pan that Grandma Kathy and Papa got me and Theo a couple of Christmases ago. I’m going to ice it in rainbow colors, because Theo’s favorite elevator aficionado (the weird guy who films elevators and posts the videos on YouTube) has a rainbow-colored toy train that he takes on all of his elevator shoots. For his class cupcakes, I got little electric-guitar cupcake toppers, along with some silver icing spray and black edible glitter, so I can make rock-and-roll cupcakes! And for his party, I’m going to reuse the guitar cake pan from last year, but instead of doing an acoustic guitar, it’ll be an electric guitar this year. So you may think I’m going overboard, but this is what I do–cool birthday stuff. Because I might be the crappy mom who doesn’t decorate eggs with her son (and who leaves the other kid to suffer with an ear infection), but at least I can make up for it by being the Mom Who Makes Cool Cakes. 🙂
Anyway, I don’t have many pictures this week because of our aborted Easter plans, but I’m going to make it up to you by sharing Chris’s Portugal pictures, which he supplied the captions for. He also took some iPhone snaps of Easter at his family’s house, so I’ll include those, too. And here’s a write-up from Chris on Lisbon–after while I’ll wrap up by sharing a rather somber series of thoughts about something that has been quite prominent in the DS community this week. (I try to leave the heavy stuff until the end, in case people want to stop reading and skip the serious stuff….) But without further ado, here’s Chris’s write-up:
Without giving away any trade secrets, my Lisbon trip was an all-hands meeting of my department (Pharma Technical Regulatory), which has members in South San Francisco, New York, Germany, and Switzerland. Part year-in-review, part forward planning, part team/personal development, part celebration, and part exploration. I’ll focus on the last part here since I’m not sure anyone wants to hear about my short presentation on prioritizing editorial tasks or about what personality trait is my biggest obstacle to accepting change.
I’ll pick up where Cathleen’s story from last week leaves off—getting to Lisbon from SFO. This was a bit of an adventure in itself. The plan was SFO to London, a short layover, and then London to Lisbon. But right off the bat, our plane had mechanical problems, so we left SFO two hours late and I missed my original connecting flight in London. (More on that in a minute.) On the bright side, two hours late or not, the flight over the Atlantic was pretty decent. Two words: “business class.” Compared to coach/economy, it’s like having your own personal studio apartment on the plane. Recliner, TV with remote, actual plates and silverware, etc. I felt like a fish out of water, honestly, since I was sure I was surrounded by executives and otherwise wealthy folks, but I wasn’t complaining!
After landing in Heathrow, I had to deal with the Curse of United. They somehow find a way to botch something about the trip whenever I fly with them. I’m sure Cathleen will kindly recap our first cross-country flight to Buffalo, on United’s bargain service, “Ted,” sometime. (We coined a few new phrases from that trip, although my favorite was “Ted—Half the name, half the airline.”) This time, they’d actually been nice enough to re-book my flight to Lisbon, but somehow forwarded the wrong flight info to TAP Portugal, the partner airline, so I spent about 90 minutes straightening that out.
After that, I had a few hours to wander around Heathrow and reminisce. Last time I was at that airport, I was a newlywed and about six weeks from finding out I’d be a dad. We have a soft spot for London, even if our honeymoon was a comedy of errors! I almost had enough time to tempt me to jump on the Underground and ride into the city, but I wasn’t that brave. As fate would have it, one of the first things I saw in the terminal was a Pret a Manger, the cafe we’d stopped to get breakfast every day on our honeymoon. (Really good pre-made sandwiches, soups, etc., and all very healthy and organic.) Needless to say I had to call Cathleen and gloat about my chicken sandwich with rocket (the London term for lettuce). The flight over to Lisbon was uneventful—business class meant coach with a good dinner (spoiled, I know)—and I got to the Hotel Corinthia around midnight.
Tuesday, after a long day of presentations (including my last-minute one with my colleague Jay), we headed out on tour buses for a “treasure hunt” in old Lisbon, starting in Rossio Square. The long story short is that we ended up following clues to find various landmarks in the old part of the city, which dates from the 18thcentury (following a massive earthquake that leveled much of the city). You can see some more details in the picture captions, but overall it’s a really cool place to explore. I’d call it a slightly rougher version of Paris—quaint old buildings, tight alleys, narrow sidewalks, cobblestone streets. All sidewalks in Lisbon are light cobblestones with darker ones set into them in patterns. It was incredible seeing that across an entire public square! We ended the night having tapas at a converted pharmacy building. (If you aren’t aware, seafood is really a staple in Lisbon, given that it’s right near the coast.)
Wednesday, after more presentations and team building, we boarded some smaller tour buses to visit the Castle of São Jorge (you have to love buses driving on medieval streets and nearly running over people on the sidewalks), drive by the 25 de Abril Bridge, and have dinner at the Red Cross Palace. (Well, more like heavy appetizers, so I ended up ordering that Portuguese delicacy “a ham and cheese sandwich with potato chips” from room service later.) Honestly, there were enough of us in small spaces that I was feeling a little claustrophobic, but luckily the weather outside was incredible, so I enjoyed sitting and looking out at the harbor or the city lights when I could.
Thursday, after one last day of presentations and personal development, a somewhat smaller group of us headed out to tour went to the Jerónimos Monastery and the nearby city of Sintra, both of which are UNESCO World Heritage Sites. The monastery happens to be the final resting place of Vasco da Gama, for those who can remember their fifth-grade unit on the world explorers, and Sintra is notable for having inspired some of Lord Byron’s work. The monastery was quite impressive, and I’ve seen some very famous cathedrals, and I wish we’d have been in Sintra during the daytime (before the fog rolled in). The cool part was that we drove out to Sintra in a long line of classic cars—mine was a limousine from the 1950s, I think. Not sure who came up with that idea, but it was really awesome! (The driver and my fellow passenger were firing back and forth in Spanish, and I was happy to say I picked up about two-thirds, despite not having any Spanish classes since college.)
Friday brought the long trip home, but it was a welcome trip. The connection was in Newark this time, and on the approach, we ran parallel to Manhattan, so I just sat and stared out the window at the Chrysler Building, the Empire State Building, the new Freedom Tower at Ground Zero, and the Statue of Liberty. What a welcome back to the US! One flight to SFO and one cab ride home later, it was done. And yes, glad to be home!
Okay, enough from Chris. 😉 Before I wrap up, I need to share my thoughts on an event that has shaken the Down syndrome community. If you don’t want to read about something rather somber, then I suggest you stop here. Consider yourself forewarned. 🙂
Have you heard of Robert Ethan Saylor? Probably not…unless you’re part of the DS community. If you are, then you’ve heard about little else for the past couple of weeks. And for good reason. Robert Saylor was a 26-year-old man with Down syndrome who died on January 12th after being improperly handled by three off-duty police officers who were working as security guards at a mall. Robert had gone, with his 18-year-old aide, to see the movie Zero Dark Thirty. When the movie ended, the aide went to get the car, and Robert tried to stay in the theater for a second showing of the movie. The theater manager called mall security to remove him. When the three off-duty cops tried to get him to leave, he refused. When one of the deputies touched him, he resisted, so they handcuffed him face-down on the floor, in a prone position, with his hands behind his back–essentially, somewhat hog-tied. He stopped breathing and fell unconscious. He revived briefly and then died–the cause of death was determined to be asphyxia.
There are a lot of factors here. Robert Saylor was quite overweight–294 pounds and only 5-foot-6. He also had an undiagnosed heart abnormality. The autopsy shows that Down syndrome, his obesity, and his heart abnormality all contributed to his death. However, the deputies are not being cited as a factor in his death–and a lot of people are very upset about that, because there is evidence that cuffing anyone in a prone position like that can be dangerous, and certainly Robert Saylor’s extra weight and heart abnormality wouldn’t have helped that…along with the narrower-than-normal airways that are common in individuals with Down syndrome. In short, you force an obese man with heart problems and narrow airways into that position, and it’s just not a good idea.
I’ve been thinking about this case all week, and I don’t really know what to think. I don’t believe the deputies maliciously acted toward Robert Saylor. But I think they used poor judgment. It was a $12 movie ticket–was that level of force really necessary? Some are saying that if Robert Saylor had been a young black man, the deputies would be under immense fire for police brutality with racist overtones. They say that because Saylor was a man with Down syndrome, this case is being swept under the rug, and the deputies aren’t being punished–becausehis life wasn’t worth that much. I don’t know what to think about that. I don’t want to think that’s true. It might be, though. Or it might not. Maybe these deputies would’ve reacted that way to anyone who resisted their order to leave the theater. I honestly don’t know.
Here’s what I do know: This is a tragic situation, and it makes me tear up to even think about it. For a number of reasons. Witnesses report that Robert was calling for his mother when he was being restrained. And his mother wasn’t there. (I’ve heard a report that she was on her way–that someone, probably his aide, had alerted her to the problem, and she headed right to the theater.) So his poor mother will live out her life knowing that her baby boy (okay, he’s not a baby anymore, but he’s always going to be her baby) died absolutely terrified and calling for her…and she couldn’t get to him. And she has lost a huge piece of her life over a stupid $12 movie ticket. Senseless! And it has been reported that Robert didn’t like being touched, and that’s why he resisted deputies. Sensory-processing issues are very common in people with Down syndrome, so this doesn’t surprise me. As I’ve been open about on this blog, I have sensory issues related to touch, and I know firsthand how a touch can actually feel painful when you’re not expecting it and you’re unable to prepare yourself for it. So I know the deputies didn’t know this and had no idea why Robert Saylor would’ve resisted when they touched him…but I know why he did. And it’s just plain sad. And, people with Down syndrome process information more slowly than other people, so it’s entirely possible that Robert didn’t exactly understand why they were trying to tell him to leave–if they had taken the time to explain it again, or wait for his aide to return, this entire tragic situation could’ve possibly been avoided. And again, I’m sure the deputies didn’t know this–few people outside of those familiar with DS know that people with DS process information more slowly. But it’s just sad that this happened.
I think about my own children. If Theo refused to leave a movie theater as, say, a teenager, I have no doubt that if he wanted to, he might be mouthy with the security personnel. Theo likes to challenge, and he can be mouthy when he wants to. But I also have no doubt that he would know when to step back and how to handle the situation–because he can problem-solve. I’ve already been told by doctors that problem-solving is an area where people with Down syndrome struggle, so then I think about Sam in a similar situation. Imagine teenager or twenty-something Sam refusing to leave a theater. The police tell him to leave and don’t give him time to process the situation and understand what they want. He doesn’t know how to react–what to do to diffuse the situation. It’s very easy to see how it could spiral out of control, with authorities thinking he’s being difficult, and him just not understanding expectations. The thought terrifies me. It makes me want to put him in a little bubble. Or, at the very least, make sure I live to be 120 so he’s never, ever without me to protect him. Because I’m his mama–that’s my job. I don’t ever want to be like Robert Saylor’s mother, who now lives with the grief of knowing that her son died calling for her. I just can’t even imagine what she’s going through.
So this is just my stream-of-conscious ramble on the subject, but I have yet to make sense of it. All I can make sense of is the fact that it’s a tragedy. Robert Saylor should still be here today. No, he shouldn’t be allowed special treatment just because of his disability–we fight for our kids to be considered just like everyone else, so then we can’t turn around and say, “Oh, but let him sit through an extra movie without paying!” If we want full equality, we need to want equality universally. But that doesn’t make it any less tragic that in trying to understand a situation that confused or upset him, Robert Saylor lost his life. I’m trying to reconcile it and realize that just because it happened to him, that doesn’t mean Sam isn’t safe. But it’s just a harsh reminder that the world doesn’t quite understand individuals with disabilities, and the most benign of circumstances can turn tragic in an instant.
On that heavy note, I’ll sign off for today. Wish me luck on Spring Break, as I attempt to keep my elder monkey occupied and my younger one cheery!
MAR 24, 2013: BARRACUDA!
Well, people, big news: WE HAVE A TOOTH!!! Amusingly enough, this is one area where Sam is more typical than Theo was: He got one of the front lower teeth first, which I believe is pretty common. Theo, on the other hand, got a top tooth first–not terribly unusual, but I think the bottom teeth more commonly come in first, if I’m not mistaken.
I am ecstatic about this tooth for some reason. I shouldn’t be, since I’m still nursing Sam, and he’s a bit of a barracuda sometimes. But I am! Perhaps mostly because he was quite fussy for a few days, and I kept saying, “He’s got to be getting teeth”–and lo and behold, I was right! And we all know how much I enjoy being right, so…. 🙂
I actually suspect more won’t be far behind. It’s pretty common for kids with DS to get teeth in bunches–I’ve heard of as many as five at once erupting. And even though that bottom front tooth has broken through now, Sam is still chewing nonstop on his hands, and he’s tugging at his ear. And when he chews on his fingers, he shoves them way back in his mouth, whereas the tooth is in the front. It’s also relatively common for kids with DS to get their teeth in odd orders (sometimes the molars come in very early–even before any other teeth!), so I have a hunch that there is at least one tooth on the back right trying to make its way in. But Sam isn’t keen on letting me look in his mouth, so at this point it’s a guessing game, and I have confirmed the presence of only one tooth.
Funny thing is, you know that Theo got his first tooth pulled a little over a week ago. And he’s been very upset about the Tooth Fairy taking it–he wanted her to give it back to him. So I made up this story about how the Tooth Fairy takes the baby teeth so she can give them to little babies who are trying to grow teeth. I said, “You know how Sammy will get teeth someday? He’ll get them from some little boy like you, who lost them! And you’ll grow bigger teeth!” And what do you know–Sam got a tooth less than a week after Theo lost his! So I told Theo that the Tooth Fairy gave his tooth to Sam, and any time he wants to see it, he just needs to look at Sam! How neat, I told him–not everyone gets to give their tooth to their little brother! This seemed to appease Theo, and he’s no longer mad at the Tooth Fairy.
So aside from the tooth, the big news of the week was that Chris was living it up in Portugal! Lisbon, to be precise. Lucky dog! When I mentioned needing to be over on the other side of the Bay last Sunday, it was because we were dropping Chris at the airport. (I didn’t want to announce on the vast Internet that I was going to be home alone with the boys, so I figured I’d wait to share the details until Chris was back home!) It was so sad to drop Chris off because Theo was so upset. He tried very hard to be brave, but when Chris got out of the car and tried to tell him goodbye, Theo’s eyes welled up with tears, and his lower lip kept trembling as he said, “Why do you have to go, Daddy? Why can’t you stay here with us?” Watching him try so hard to be brave was just so sad! But luckily, once we drove away he fell asleep, and when he woke up he was in good spirits again.
Chris had a great time in Portugal and ended up being really glad he went. He took some pictures and promises to give me a write-up to post on the blog next week, along with his pictures. Long story short: He did a short presentation that went well, attended lots of team-building events, got a lot of free food and tourism out of the deal, stayed up way too late in his hotel room working every night, but had an all-around good time. And he doesn’t ever want to fly coach again, the spoiled brat! Ha ha, we will be flying coach again, but business class has spoiled him!
Chris was gone from Sunday until the wee hours of Saturday morning, so just about a week. And it went fine for us here, too. Monday was a bit of a tough day for me, mostly just because Sam had his six-month assessment from his infant development specialist that day, and those are always a bit depressing. I’m getting more used to them, but I neverlove them. He’s doing okay–not stellar, but not bad. He’s pretty solidly average as babies with DS go–he’s not blowing away the charts on anything, but he’s not far behind other kids with DS in anything except speech. (He is assessed at about a six- to seven-month developmental age in most areas, which is pretty average in the world of DS for a child of his chronological age.) And the speech part is the part that really got to me, I think. He assessed at a four-month developmental level in speech…which is rather sad, given that he’s 13.5 months old. And I feel annoyed about it (along with being sad) because I’ve been pressuring Regional Center and Kaiser for months to try to get him some speech/feeding therapy (they go hand in hand at this age), and no one wants to provide it. (Regional Center says it’s a medical issue that Kaiser should cover, and Kaiser says he’s in the 50% weight range for babies with DS, so he must not have any significant problems. Oh, and “all children with DS have feeding issues, so that’s not something we need to address.” GRRR! I won’t get on my soapbox here, but you can imagine what I think about that!)
So anyway, I wasn’t in the best of spirits on Monday, but we muddled through. And on Tuesday, my Mom came for a visit! Sam and I went and picked her up while Theo was at preschool, and when he got off the bus and saw her, he was so excited! He’s been wanting her to come to our house for quite a while, and he kept showing her around and saying, “Do you like my house, Grandma Diane?” He was so excited to have her stay until Friday morning, and in fact he kept trying to convince her that she ought to stay longer. 🙂
We just kept with our usual routine during the week, but it was fun to have Grandma Diane here to see some of what we do–and it wasawesome to have another adult to talk to! That’s what I knew I’d miss most about Chris when he was gone–just having another adult to talk to. I can handle the boys on my own in terms of feeding, school, bedtime, appointments, playing, etc. But I really like having an adult to talk to when the boys are in bed and I can sit down and relax. So it was wonderful to have my Mom here! She also did a lot of dishes for me, and I can’t complain about that. 🙂 She wanted to help out more with Sam, but alas Sam was being a diva who insisted on only having his Mommy feed him, etc. Grandma was just fine and dandy, as long as she didn’t dare try to feed him or anything! (See what I mean about the teething crankiness? He’s always a bit of a mama’s boy, but he was much clingier to me than usual, and I knew he wasn’t sick, so I figured it was teeth.)
Grandma got to watch part of Sam’s PT (which he wasn’t overly cooperative for, but he never is, so it was par for the course), and she got to go to Baby Steps class with us and see some of Sam’s little pals. Theo had an OT appointment with his beloved OT, Nan, and my Mom got to meet her and see some of what Theo does with her, too. And she got to see Theo’s classroom and meet his teacher when we went to pick him up on Thursday for social skills class. It was funny–he usually lovesgoing to social skills, but he did not want to leave his classroom, because he was so happy to show my Mom around. Teacher Amanda finally lured him to leave by taking a picture of him and my Mom and telling him she’d print it out for him the next day…and it’s a great picture of my Mom, but Theo looks rather irritated!
Sam and I drove my Mom home on Friday, while Theo was in school. And as I left my Mom’s house to drive home, I got a call from Theo’s teacher, asking me to come to the school right away. Theo had gotten hurt on the playground, and they thought I should take him in to Kaiser to be checked out, as it was a head injury. Well…shoot. I was 90 minutes away, and Chris was somewhere over the Atlantic Ocean! We had no one to pick up Theo! I thought about calling Grandma Kathy and Papa, but they’re 75 minutes away, too, so it was just as fast for me to head back as it would be for them to head up. Seriously, what are the odds of that happening? Whenever I have to be somewhere far from Theo’s school, I always plan it for a day Chris can work at home, just in case Theo would need to be picked up for some reason. And he has never had to, but we just always do that just in case. And my Mom had said to me something about, “What are you going to do if something happens to Theo while you’re driving me home?” and I assured her, “He’ll be fine!” And then he goes and whacks his head on the one daythat no one is there to get him! Sigh…
Luckily, all is well. One of the people who works at the school is also a nurse, and she was pretty certain that he was okay. So, he stayed with his teacher and a couple of other people, who iced his head to try to bring down the swelling. Apparently he didn’t like the ice on his head, so Teacher Amanda bribed him with candy to let her ice it down. Ha! (It worked–are we surprised??) When I got there, he had a sizable goose egg on his head (which Amanda said was actually only about half the size it was when he first did it!) and two bruises, but he was acting completely normal and happy, so I was pretty sure he was fine. But, I took him to Kaiser just to be sure. He was ecstatic to be at the hospital, which has numerous elevators, and he was interrogating everyone he came across about the hospital’s elevators. As usual, people looked at me with a mixture of disbelief and amusement as he very seriously chatted them up about the elevators in their building and corrected them when they gave him a wrong answer about how many floors they have, how many elevators they have, etc. Theo is nothing if not amusing….
Anyway, the doctor who saw him said he would eat his stethoscope if Theo had a concussion–he was absolutely certain that despite the ugly knot on his head, Theo was fine. He said Theo clearly had a lot of energy and very clear thinking, so he wasn’t worried at all. Whew! While at Kaiser, we also got Sam’s long-delayed 12-month vaccines. I figured as long as Sam was miserable with teething and on Motrin already, I might as well just get the darn vaccines done. I was dreading this set, as it has the evil MMR vaccine in it (that one seems to give kids trouble fairly often), and Sam hasn’t done very well with his shots the previous three times he’s had them. But he’s actually doing pretty well this time–not much fussiness, and no more fever than he ever has. (He pretty consistently has a temperature of around 99.4, but it hasn’t gone above that.)
Chris got home early Saturday morning (1:30 a.m. or thereabouts–I was sleeping), so he was there when we woke up. Yay!! Theo had managed to earn all of his stickers while Chris was gone, and he was itching for a trip to “the lab” (a.k.a. the Children’s Creativity Museum). I thought Chris might be too tired for that, but he was game to go…so we did. Theo very much wanted to ride BART into San Francisco for this (and it’s cheaper than us driving in), but we were a little leery because BART always seems to overwhelm Theo and set him off. He loves it, but it’s just sensory overload, and he gets kind of manic and unfocused on it, and he has a lot of trouble behaving and listening. So, we decided to try his weighted vest, which I just bought used from another mother who has a child at his OT clinic. Theo’s school has used weighted vests with him in the past, when they were trying to get him to be able to sit for circle time. He no longer needs them for circle time, but in the beginning, when he was just unable to cope with that, the weighted vest was a big help. So, when I saw one being sold secondhand, I jumped at the chance to get it. And what a difference! We told him it was a “special, cool BART vest,” and he wore it proudly. And we couldn’t believe the difference! He sat in his seat and rode the train calmly–excited to be there and look around, but not manic and unfocused and unable to sit still. And he was pretty calm and cooperative at the museum and lunch, too…and did great on the train home! Wow–makes me wish we’d gotten him a weighted vest a year ago! It’s not something he needs all the time, but in situations where we know he tends to get overwhelmed and unable to cope, I think it’s going to be very useful. (In case you’re curious, for “sensory seekers” like Theo, the weight of the vest provides constant sensory input and calms down their system in times when they might normally be overwhelmed–in new environments, environments where they typically struggle, etc. The pressure of the vest is soothing for some children–Theo being one of them.)
On Sunday, we decided to go to a park we like in Napa and have a picnic of sorts. Well, that was the plan, anyway…and then our boys both fell asleep in the car on the way there, and we don’t wake sleeping boys, so we kept driving. We ended up in Sonoma, and we went to a couple of parks there instead. The weather was gorgeous–perfect for a day outside!
Sunday was also cool because karma repaid me in a most excellent way! I have been kind of wanting a hiking backpack for Sam–those ones you use for hiking when you want to carry a child on your back for long distances. We don’t hike all that much, but we do go to a lot of parks and do a lot of walking around. And it gets heavy to carry Sam on my front all the time…and he’s unlikely to start walking until he’s probably 2 ½ or 3. By then, my back will be a wreck if I keep carrying him on my front! So I was interested in a hiking backpack to help me carry his weight better, but I wasn’t keen on spending a lot of money for it. I found one on our local “consignment Facebook group” (basically, local people post things they have to sell, and you can buy from them) for $15, and I went to look at it Sunday morning. I had looked it up online and seen that it got great reviews and normally retailed for anywhere from $200 to $280. When I got to the woman’s house, she showed it to me and said, “Just take it if you think it will work–I don’t want any money for it. I only used it a couple of times.” I said, “What? You don’t?” and she said, “No–you know Tiffany, right? She had some lamps I wanted, and she gave them to me for free and said that in exchange, I should give you the backpack for free. So take it if you want it–I’m glad someone will get use out of it!” Tiffany is our landlord–she had seen that I corresponded with this woman about the backpack, and she told her to give it to me for no charge. Awesome! 🙂 We have the best landlords! I figure maybe it’s karma–we always pay our rent early and try to be good tenants, and we got paid back by getting a $200 hiking backpack for free! I tried Sam out in it Sunday night, and it worked great!
Anyway, that was our week! Portugal pictures next week–for now, you just get the boys!
MAR 17, 2013: LUCK O’ THE IRISH!
In honor of St. Patrick’s Day and the fact that we had a pretty lucky week, I figured I ought to title this week’s post “Luck o’ the Irish!” We’re not Irish, but we did have a lucky week…and we like leprechauns. 😉
Let’s talk jobs first. After explaining a couple of weeks ago how hard it is to find editing jobs, I’m suddenly flooded with possibilities! Well, okay, not flooded, but I have several possibilities. I got hired as a backup copyeditor for an entertainment website. I have a colleague who offered me a project I have to turn down because of the timing–but he says he’s sure he’ll have more for me in the future. And perhaps most notably, I got a teaching position with UC Berkeley Extension! I had my phone interview Tuesday morning, and I felt really good about how it went. And what do you know–four hours later, I got an email offering me a teaching position starting in May! I’ll be teaching an online course called Advanced Editorial Workshop. I was rather surprised to get offered that one, as it’s the final class in their series of four. I thought I’d get offered the intro class to start, but I guess not. I’m definitely qualified for it–it’s about developmental editing, and I spent several years doing that before my main client cut costs and stopped having me perform that task on my projects. So I’m confident that I can teach it–just surprised they started me out with that one! There’s a possibility I may get to teach an in-person class too, but at the moment I’ve just been offered the one. I’m very excited!
So that’s the news on the job front, but I have much more news on theteeth front! Doesn’t that sound unbelievably exciting?! Okay, maybe not so much…but I’m going to share it anyway. I think Sam is working on teeth. This may be a very slow process, as is common in DS and common in my children (Theo was a painfully slow teether!), but I think he’s starting. The child who wouldn’t put anything solid in his mouth and wouldn’t put toys in his mouth (which apparently is a very good and typical baby thing to do) is suddenly putting everything in his mouth. And he’s sleeping horribly–not that he doesn’t always, but it’s even worse lately. He gnaws on his fists and fingers all the time, and he will actually happily gum a pretzel or sometimes a baby biscuit now. Before, he would gasp and sputter and cry if you even brought those near his mouth. Now he digs them–especially the pretzels. I think salt is his gateway drug….
I had to take him to the doctor on Tuesday–he still had that nasty cold after four weeks, and his pediatrician wanted to make sure it hadn’t become pneumonia–and during the long wait for her, I set him on the exam table, where he happily tore up the tissue paper and tried to eat it. I actually got a bit of a laugh–when his doctor came in, she said, “He’s eating the paper. Do you mind?” I looked at her a bit sheepishly, thinking she thought I was a horrible mother for letting him gnaw on paper, and said, “I don’t really care. It’s certainly not the worst thing he’ll ever put in his mouth.” She burst out laughing, patted my arm, and said, “Can you be my mother? You let him have fun! I always let my kids have fun, too–play in the mud, get dirty… And you know what? They thank me for it now.” I really love her–she’s just a sweet little lady. She’s on the older side, so I just keep hoping she doesn’t decide to retire. She takes great care of Sam, too–she’s always of the “better safe than sorry” mindset with him, which sets my mind at ease. If she says he’s fine, I definitely believe her, because I know she’s very thorough and careful.
Anyway, he is fine–no pneumonia and no ear infection–and he suffered no ill effects from eating the paper. 😉
But while one of my kids appears to be getting teeth, the other one lost a tooth. Yes, we finally got that tooth of Theo’s pulled–and two cavities filled. By the way, lest you think I’m a lax parent who doesn’t make my child practice good dental hygiene, we’ve been brushing his teeth since he first got them. Just so happens that two of his molars are pressed together very tightly, and the dentist said it’s easy for food to get trapped between them because they’re so jammed together. Sigh…
You may remember that we tried to have Theo’s dental work done while he was under laughing gas, but it was a no-go. He was just way, way too tense for the dentist to work on him, and she wasn’t about to force him and scare him away from dentists forever. So, we went back on Friday, and they gave him a dose of Versed for “conscious sedation.” If you’ve never had conscious sedation, it’s kind of neat–you’re awake the whole time, but the drugs have an amnesic effect, so you don’t remember what happened. (Well, in theory. I had it not long ago, and I “woke up” in the middle and remember what happened very clearly. It was not pleasant. But most people remain in a lovely, hazy, sedated state and don’t remember a thing about it afterward.) So the dentist gave Theo a cup of “juice” to drink and told me, “Some kids don’t show much outward effect, and others show a lot. We’re basically getting him drunk….”
Let me tell you, Theo is one of the kids who shows a lot. We went out to the waiting room to wait for it to take effect, and he was fine for about ten minutes. Then he started getting belligerent, so I knew something was happening. I urged him to sit next to me so I could read him a book, and he did. And he kept lurching back and forth, trying so hard to sit up straight but failing miserably. And then he started slurring his words like a drunk. I probably won’t win any Mother of the Year awards for admitting this, but it was hilarious. I actually recorded a short segment, which you can see if you click here. He was trying desperately to tell me that the book we were reading was very long, but he wasn’t having much success. And I was trying desperately not to laugh. 🙂
So, when he was sufficiently hammered, I carried him back to the chair and put him down. He looked at me and slurred, “Hey…Mom…remember when I used to be in the other room?” I stifled a laugh, gave him a kiss, and went back out to the waiting room. The procedure room is very small, so they told me I could peek in any time, but there wasn’t room for me to sit in. I snuck back in once, and he was talking away. One of the nurses laughed and said, “He’s doing great–the only problem is he keeps wanting to push all the buttons!” Yep, sounds like Theo, all right….
They finished very quickly, and Theo was fine…and confused about why his legs weren’t quite working the way he expected them to. The nurse carried him out to the car for me, and we headed home. On the way, Funny Drunk Theo turned into Belligerent Drunk Theo, and he spent the ride home hammering me with questions: “Why does my lip hurt, Mommy? How long is it going to hurt? How many minutes? I want to use the iPad when we get home. Why can’t I hold the iPad? I’m fine, Mommy–I do not need to rest! I can hold the iPad just fine!”
When the drugs wore off, he was actually very congenial most of the day, and all was well. I’m relieved that the procedure is done and my son is not traumatized forever by dentistry!
As long as we’re talking about health, would you like a gut-flora update?Of course you would! It’s slow-going so far. Something in the set of probiotics, digestive enzymes, and protein supplement the naturopath prescribed sent me into a bout of illness, so I had to stop everything and restart, giving each new item three days before adding a new one. In doing so, I believe I’ve found the culprit that made me sick: the protein powder for my breakfast smoothie. It happens to have xanthan gum in it, so I’m not surprised. Sigh… Anyway, now I’m adding things back in, and so far so good…with the exception of the protein powder, which I’ve cut out and will not be going back to. I’ve fallen off the sugar wagon a bit, though. Only a tiny bit! Staying 100% sugar-free was too hard for me, given that I also can’t eat gluten and dairy. Those three items (especially gluten and sugar) are in everything, so my diet was just ridiculously limited, and I was miserable. So I am now allowing myself one small sugar cheat a day–a flavored coffee. In the grand scheme of sugar, it’s not so bad–I looked it up, and the kind I like actually has less sugar than a small all-fruit Jamba Juice! So, instead of being 100% sugar-free, I’m about 95% sugar-free…and that’s just going to have to be good enough for now, because I was miserable.
Funny thing is, even going 95% sugar-free has changed my taste buds! The regular amount of chocolate in my coffee is much too sweet for me now, so I’m having it with less chocolate in it…and it tastes perfect. I can see how cutting out sugar definitely lessens your craving/taste for it.
I’ve also lost six pounds in the first 10 days–wahoo! I think I may stay on this largely sugar-free (and gluten-free and dairy-free) diet for two months instead of the one the naturopath suggested, in an effort to take off the baby weight and also to give my body some extra time to heal–particularly since I had to stop the probiotics/enzymes and restart them.
Moving right along from health…how about exercise? This was Theo’s last week of soccer until mid-April, and we had a lovely Saturday morning for it. Soccer is the one splurge we’ve kept in our budget, because Theo gets a lot of pleasure from it, and we think the physical activity and teamwork aspects of it are great for him. And this time, we feel really confident that he can handle the next level up, so he’ll be starting pre-soccer in mid-April! (He was in tot soccer before.) Should be fun–we love taking him to his classes, because he just has a great time out there!
After soccer, we went to a park in Orinda we had heard about–just for a change of scenery. At first Theo seemed kind of bored by it, but then he suddenly mastered the monkey bars–something he’s been working on for about two years!—and after that, he was enchanted by the park. We brought a picnic lunch and spent a couple of hours out there, enjoying the gorgeous weather.
Sunday was another park day. Chris had to be on the other side of the Bay by late afternoon, so we took the opportunity to go to a park there that we really like. Theo played for a couple of hours, and I enjoyed watching the airplanes land. 🙂 (It’s a park that happens to be near SF airport, and my favorite part about that park is watching the planes come in low overhead! Theo’s favorite part is that it has two poles for him to go down, plus a giant super-fast tunnel slide! And Sam just likes to hang out….)
Speaking of Sam, you all have some homework this week: Thursday the 21st is World Down Syndrome day! So give a little smile to someone you love who’s rocking that extra chromosome! And if you don’t know anyone who is, then I’ll give Sam a little squeeze for you!
I’ll leave you with a cute little Sam bit: It appears that Sam is embracing his Italian roots and talking with his hands. He’s started babbling a lot, and we’ve noticed that whenever he’s going, “Da-da-da-da-da-da” (which is the sound he makes 99% of the time), he raises his hands and shakes them emphatically. Clearly, much like his big brother, the boy has a point to make. 🙂
Tune in for lots of fun stories next weekend–Grandma Diane will be visiting for a few days this week! And Happy St. Patrick’s Day, all!
MAR 10, 2013: WHEN ONE DOOR CLOSES…
Before I start this week’s blog, I want to mention that we lost a very special person this week–my Aunt Laurel. She passed away on Thursday morning, and she will be so missed by so many people. But she deserves her own blog post and not just a mention in this one, so please check out the little post I wrote about her here….
Getting the news about Aunt Laurel made for a rather somber end of the week for me–she was one of my favorite relatives. But before that, we had actually had quite a good week. I titled this blog post “When One Door Closes…” because it seems that where one door (my job) may have closed, another one (a new opportunity) may have opened. I’ve been hitting up all my contacts to try to find work, and I’ve run into several walls, but then I had an interesting opportunity arise.
UC Berkeley Extension has been posting a job listing for an instructor in their Professional Sequence in Editing program for years. The program is growing, and so every six months or so, they post a listing for instructors. And every time they do, I submit my updated resume for consideration. And every time, I get a nice form response saying they’ll keep my information on file. On Monday morning, I was talking to Sam’s OT about my job situation, and she and I were brainstorming a bit. She said, “I think Berkeley has some sort of online writing center–why don’t you try them?” I laughed and said, “They have an online editing certificate, and I keep applying to teach in that program, and they never get back to me.” This was Monday. On Tuesday, I got an email from a woman from—you guessed it!—UC Berkeley Extension, saying that they had received my resume in November 2012 and were interested in talking to me about teaching in their program. What are the odds of that coming up just when I needed it, after all of these years of me applying and getting form rejections?!
Naturally, I emailed back and said I was very interested, and now I have an interview on Tuesday! They want to have me possibly teach a few online courses and then also one in-person course on Saturday mornings. I’m definitely interested in the online courses, and I’ll have to think about the in-person class. On one hand, I would love to teach in person again. My life largely revolves around socializing with a five-year-old and a one-year-old, and it would be awesome to actually get to interact with adults in a professional manner again! On the other hand, it means I’d have to give up my Saturdays with my family, and I really enjoy those. I’d also have to miss Theo’s soccer games, which I love. So, I’ll talk to them about the in-person class, but we’ll see whether it’s worth my while to take it (if they offer it to me).
Hopefully, I won’t get immediately disqualified. They want me to submit teaching evaluations from when I taught, and I can’t find themanywhere! I think I might’ve thrown them away the last time we moved, thinking I wouldn’t possibly ever need them again. UCB Extension was pretty forthright about there being a lot of bureaucracy in place around hiring, so I’m afraid my lack of documentation of my teaching evaluations may go against me. I hope not, but we’ll see….
And then, Sunday afternoon, another door opened! Last week, I sent in my resume for a freelance editing position that came across my desk, and I found out Sunday afternoon that I got it! I’m not sure how much work I’ll see from it, but at least it’s yet another client to add to the roster. (This one is copyediting sales/advertising stuff and celebrity gossip–mostly the former but some of the latter. And I have a secret love of celebrity gossip–People magazine is a great love of mine. So if this client actually produces some work for me, I think it will be fun.)
Chris and I spent much time this week working on slashing our budget, and things are looking less bleak than we thought. If I can manage to find some replacement work (such as this UCB Extension gig), we can tighten down and refine enough to make it work…we think. I also recently got re-hired by a firm that used to have me edit for eHow.com, and if they continue to provide me with work, that will help. (They were great for a long time, and then the work just slowed to a trickle, and there were never any opportunities. But now they’ve opened up a new section that seems to be offering a reasonable amount of work, so if that keeps up, it should help us bridge the gap.)
Also, Chris had his annual review this week, and he did terrific! I’m very proud of him. 🙂 He worked really hard all year, and his bosses clearly took note. He got an overall “Exceeds Expectations” rating, and his boss told him that usually they only give “Meets Expectations.” And, unlike at his old company, where he often got no annual raise, Genentech actually rewards employees for working hard. So he got a nice raise and bonus, which will come in handy. Don’t get me wrong–we’re not retiring on our riches or anything. But things definitely look less bleak than they did last week. Chris’s goal is for us to be able to make it and treat ourselves to one week of vacation this year–renting a small cottage somewhere within driving distance, like we did last year. He desperately wants just one week to relax as a family, with no worries about work, therapies, school, etc. So we’ll see whether we can make that work. I’ve done a little exploring and have found some areas where we might be able to rent a small cottage for a reasonable amount–particularly if we wait until after August 15th, when the summer rates turn to fall rates. I’m pretty sure Theo’s school won’t start until late August, so we may try to schedule something for that third week in August, if we can make the numbers work. Having that to look forward to will make the slashed-budget-with-no-extras much easier to work with, I think. I work best when I have some sort of fun goal. 🙂
Speaking of Chris, he finished the first pass of editing the baby sleep book for the sleep consultant, and she was delighted with it! I’m breathing a sigh of relief. I had absolutely no doubt about Chris’s editing ability–I’m a total control freak about my work, and Chris is the one person I trust to edit with me. He’s very detail-oriented. But the sleep consultant had told me that she had two previous editors and a co-writer and was unhappy with all three, and so I thought, “Uh oh. Are we going to be able to live up to what she wants?” But apparently, Chris did. He sent her the first pass of the book, and she wrote back to both of us about how thrilled she was with it. Yay!! Now I just need to read it. Sam’s sleep at night is as bad as ever, so I need to figure out what to do with him. 🙂 Her solutions for naps have worked fabulously, so I need to figure out how to get that to transfer over to night sleep. Hmmm, maybe if I read the book…. 😉
But shifting from the grownups to the kids…Theo’s class went to the fire station this week! What fun! Sam and I chaperoned, which I love doing. I had never been to a fire station before, so it was a neat treat for me, too. The firemen told the kids about what to do in the event of a fire, then took them on a tour of the station and the ladder truck. All of the kids got to climb into the ladder truck, which was big excitement, and they all got to use the fire hose. Theo was so serious during all of this–I don’t think he cracked a smile once. But when we got in the car, he started chatting animatedly about everything. I think he was just taking it all in and working so hard on figuring out what the “rules” in the new place were that he forgot to smile! So, you’ll see stoic pictures of him at the fire station, but he really did have a good time. His teacher treated the kids to Burger King afterward (we were supposed to have a snack in the park, but the weather didn’t cooperate), and I let Theo have some chicken nuggets and fries because I don’t like him to be excluded during special treats like that, where all of his friends are having something. But oooh, boy, did we pay the price that night! Gluten behavior, anyone? Chris said, “This can’t all be because he ate some gluten,” and I said, “Well, do you want to give him gluten again?” and he quickly replied that he did not! So, take that as you will. It was probably a combination of gluten and a change in routine (which always disrupts him), but for whatever reason, he was a real turkey on Wednesday night. Ah well…
The only problem with fire-safety week in preschool is how seriously Theo took it. Click here to read about our experience with 9-1-1 this week, thanks to Mr. Theo. 😉
In other fun this week, Theo got to go to his cousin Nik’s fifth birthday party at the bowling alley! The kids bowled and had pizza and cake. We let Theo have pizza and cake along with everyone else–dairy andgluten! He was a bit feisty on Sunday, but I’m pleased to report that as of this point (Sunday afternoon), he seems to have suffered no ill effect from the dairy. He’s finally old enough to tell us when he doesn’t feel well, so I’ve asked him about his tummy, and he says it’s fine. He’s also eating fine and doesn’t appear to have any eczema (yet), so I’m cautiously optimistic that he may finally be outgrowing his dairy intolerance. We’ll continue to experiment with small amounts of dairy here and there and see how he does. It would be nice if he outgrew it, since cheese and yogurt and such are good snacks, and the real stuff (not the soy versions) are much tastier.
As for the party, Theo didn’t seem overly interested in the bowling (and his bowling prowess is about like mine, which isn’t really a ringing endorsement!), but he loved getting to run around with Nik and the other kids. This solidified our belief that a park is just the right place for Theo’s birthday party–a place where he can just run around and be goofy with his friends.
So yes, I’m finally giving in on the birthday party. I’m not a big party person, as many of you know, and up until this point Theo hasn’t even noticed that he’s never had one. So, why bother with something he wasn’t missing? But this year, for the past six months, he has been talking about his party. He desperately wants one. And so, I’ve decided that this is the year we will have one. We’re thinking very low key–just an afternoon at the park with some of his friends. We’ll grill hot dogs or something and have a cake or cupcakes, and I can pick up some inexpensive decorations at the Dollar Store. I think Theo will be delighted with that–all he really wants is to see all of his friends. And we can do that without breaking our tight budget. Heck, in the end, I might even end up enjoying it. 😉
Speaking of Theo, age almost-five has been trying in some ways–he has developed a sense of justice and demands to know why things aren’t always fair. He can be a real stinker and smart-mouthed when he doesn’t care for how we’re handling a situation. But it has also come with incredible sweetness. Click here to read about Theo’s birthday request from my Mom (which I think is sweet, even if he has ulterior motives!).
As for Mr. Sam, he had his physical therapy evaluation this week. This is another appointment in that long string of red tape that I’m fighting my way through to retain his OT and PT services from the Regional Center. Anyway, he did great. The PT (Heidi) assessed him at a developmental age of 7.5 months in terms of gross-motor skills, and I think that’s pretty accurate. He’s sitting up unassisted and starting to try to scoot, which is about what a seven-month-old baby would be doing. Heidi’s only concern is that he looks like he might try to scoot on his bottom (in a sitting position) rather than scooting on his tummy, and she doesn’t want him doing that. So she gave me some handouts on how to help him work on the transition from sitting to crawling position. (This is an unbelievably complex motion. The things you never realize until you have a kid who has to be taught the correct way to move…)
So anyway, at age 13 months, Sam is developmentally 7.5 months in terms of gross-motor skills and 6 to 7 months in terms of fine-motor skills. Sounds about right. Surprisingly, these numbers weren’t as hard to hear as I thought they’d be. I felt a slight twinge, but mostly I just shrugged and thought, “Yep, sounds about right.” I’ve realized I’ve had a bit of a shift in my thinking. I now think typically developing babies are somehow super-human, rather than thinking Sam is delayed. For me, Sam is the norm, and these babies who are pulling to stand and try to walk at 12 months are insanely advanced! Now, I know logically that this isn’t true, but that’s my gut feeling! I have several friends/relatives who had babies shortly after Sam, and their kids are now starting to walk, talk, etc. And every time I see news of that on Facebook or whatever, I think, “Seriously?? What sort of super-human is that kid?!” And then I realize that their baby is typical. And I realize that Sam has become my new normal. 🙂 And I think that’s actually a good thing, however skewed it may be. It makes it far easier to hear that my little guy is six months behind on development. Even though I know they’re right, I just think, “Yeah, whatever. He’s developing on Sam time. This is normal.”
Holy smokes, I managed to keep this blog a reasonable length this week! Okay, I’m going to wrap up now, before I start rambling on some other topic. But before I do, check out the cute new video of Sam “dancing” to his favorite tune on the Still More Videos page. Have a wonderful week, all!
MAR 7, 2013: FOR MY AUNT LAUREL
The world lost one of its best people today. Just one week shy of her birthday (her 86th, I believe), my Aunt Laurel passed away. And the world is just a little bit less bright now.
My Aunt Laurel was actually my great-aunt, but that label sounds like someone much older and more distant, and my Aunt Laurel was always young at heart and never distant. So let’s just call her my aunt, which is what I always did.
Aunt Laurel was the youngest of the three Harrison girls. The oldest was my grandma–feisty, headstrong, funny, and bossy. (She’d tell you this herself if she were here!) In the middle was Aunt Norma, a neat-freak renowned for her unintentionally funny utterances. (Someday, I’ll share the story of the time she told me in great detail about her bladder falling out.) The youngest was my Aunt Laurel–sweet and loving and kind. I’m told, though, that you didn’t want to mess with my Aunt Laurel, either! No one in their right mind messed with any of the Harrison girls.
I first met Aunt Laurel and Uncle Ralph when I was six years old. They came to visit us in California. I remember we all went to Mission San Juan Bautista for a day, and my uncle made a little rabbit out of his handkerchief to amuse me. He was funny, and my Aunt Laurel was always smiling. What my Aunt Laurel remembered most about that day was, apparently, my voracious appetite. As the story goes, we all went out for Mexican food, and I insisted on ordering an adult-sized entree. My Dad cautioned me that if I was going to order that, I’d better eat it all…and I did. My Aunt Laurel was amazed at my appetite, and I don’t think I ever saw her afterward that she didn’t remind me of the time I ate all the Mexican food! (Some things never change–I still have a huge appetite!)
The next time I saw Aunt Laurel, I was 15. My Mom’s entire family lives in the Buffalo, NY, area, and we were living in California. Plane travel was expensive, and my family didn’t really take vacations. But when I was 15, my Mom was working and had her own spending money, and she decided it was time to take me along on her annual pilgrimmage to Buffalo. And what fun we had! I got to meet most of my Mom’s family, and my Aunt Laurel and Uncle Ralph were just as cool as I remembered.
Since then, I’ve been to Buffalo a number of times, and seeing my Aunt Laurel is always one of my favorite parts. She was just one of those people who immediately made you feel welcome and loved. Chris went back there with me when we had been dating about seven months. I was presenting at a conference in the southern part of the state and decided to go through Buffalo to visit my family. Chris came along for the ride. I remember when we left Buffalo, he said, “I really like your family. They just made me feel so welcome–like I was one of them.” They’re like that, my Buffalo family–just really nice people who make you feel at home. And my aunt was a big part of that.
When Chris and I got married, Aunt Laurel flew out for the wedding with my cousin Nancy. It meant so much to me to have them there! My family is pretty small, and so to have two of my aunts make the trip out for the wedding really meant a lot to me. And my grandma, who by this time was living in California, was delighted to get to see her sister again.
I’ve been to Buffalo a few times since the wedding, and each time I’ve looked forward to having Aunt Laurel see Theo. You see, my aunt lovedkids and dogs (not necessarily in that order, depending on the kid and the dog!). She never sent me an email without signing it, “Much love to you, Chris, Theo, and Sam, and puppy hugs to Lovely Luna and Beautiful Zoe.” And she just unabashedly loved Theo, which made me love her all the more. One good way to my heart is to love my kids! When Theo was 2 1/2, I flew back to Buffalo alone with him, as Chris had to stay behind for a couple of days. Aunt Laurel insisted on having us over for a day–she didn’t want me to be alone, and she was delighted to get to spend some time with Theo. She made us lunch, and then we all went to the zoo. And what a wonderful time we had! I’m sad that she will never get to meet Sam, but I know she loved seeing his pictures on the blog. And I do feel lucky that she got to see Theo several times.
The truth is, I only saw my aunt a handful of times in my life. But I really, really loved her, and I will miss her. She was just one of those people who is easy to love. Our relationship was simple and uncomplicated: I loved her, and she loved me. It was as simple as that. Wouldn’t it be nice if all relationships were so straightforward and easy?
So, with tears on my cheeks, I say goodbye to my Aunt Laurel. She was one of the best people I’ve known, and I will always miss her. Rest in peace, Aunt Laurel. You are back with Uncle Ralph now, and I think you two are cozying up to Biscuit, Brittany, Muffins, and all of your furry, four-legged friends. Thank you for making our world a better place.
MAR 3, 2013: ON PINKEYE, JOBLESSNESS, AND GUT FLORA
Well, doesn’t this week’s blog title indicate a fun post?! Sit back, relax, and prepare yourself for an exciting dissertation on goopy eyes, leaky guts, and layoffs! Okay, seriously, I’ll try to keep it light. But it’s been a heavy week. 🙂
Where to start… How about with pinkeye?! Sam finished up his antibiotics for his double ear infection last Friday, but before he did, he came down with another cold. It seemed to be just a typical cold at first–congestion, etc. But by Wednesday (five days after finishing the antibiotics), it had turned into a fever. That’s the same thing that happened last time (when he ended up with the double ear infection), so I operated under the “better safe than sorry” idea and got him an appointment for an ear check. Turns out his ears are fine this time…but he has pinkeye! And so now he’s on drops for that–which sting when we put them in four times a day, so he’s not thrilled. Poor baby!
And we wonder how he got pinkeye. I don’t believe Theo had it, so he’s not the culprit. (He had goopy eyes one day last week, but Kaiser told me it was just related to his cold, not pinkeye–and it cleared up on its own in one day, no meds needed. I’m really hoping he doesn’t catch it from Sam, because trying to put painful drops in Theo’s eyes four times a day for a week is not a task I would enjoy!) Sam is rarely anywhere that he’s not riding safely on my chest, bundled in the Ergo or the Bjorn. Occasionally he gets to ride in the grocery cart (big fun!), so it’s possible he got it from that. But I’m not sure… And in doing a bit of research, I found that there is one strain of pneumonia that has pinkeye as its primary symptom (along with common cold symptoms), so I’m wondering if that’s where we’re headed. Supposedly it’s a slow-moving viral pneumonia that isn’t particularly serious (no pneumonia is a good thing, but it’s far less serious than bacterial pneumonia), so I’m just keeping a close eye on him right now. As of Sunday morning, when I write this, he’s had a fever again for two days and is coughing quite a bit. But the fever is low (99.2 or so), and his doctor told me not to worry unless it gets over 101. So, I’m watching and waiting… He’s reasonably cheery and active, and he’s eating well, so I’m not too concerned…just watching.
I wouldn’t describe Sam as a “sickly” child, but he certainly does get sick more than Theo did at this age! But, he has a brother in preschool bringing home bugs, and kids with DS tend to be more susceptible to respiratory bugs, so I guess that probably explains it. Poor guy–I will be so glad when cold/flu season is over!
I wish I could say that Wednesday’s pinkeye diagnosis was the worst part of that day, but it wasn’t. It seems I may have lost my job. Well, sort of. I’m freelance, as most of you know, so I can have as many “employers” as I want. Right now, I have five main clients I do work for. However, for the past 12 years, I have done easily 95% of my work for one huge client. And that client sent me a lovely kiss-off email on Wednesday, I think. So I still have my other four clients, but the work they give me is little bits here and there–enough to earn a few thousand dollars a year, but not much more.
So, the kiss-off email… Well, it’s hard to tell for sure if that’s what it was, but I have my suspicions. This big client is a major academic/technical publisher. Huge. Many divisions. I work for one of the many divisions. Four months ago, a fellow freelancer got an email from one of theirother divisions, stating that they were shifting management of freelancers over to their “full-service production staff.” That meant the full-service production staff (let’s call them FSPS for short, because that’s a mouthful to type/read) would handle hiring freelancers (like me and my fellow freelancer who got the email), as well as paying them. Now let me translate: The FSPS is a company in India that for many years has been handling book layout. They also offer editing and indexing services, but the big academic publisher had kept those services in America, hiring American freelancers. Now, the FSPS would be handling those services as well–and my friend, the American freelancer, would be put in an “approved pool of contractors” for potential hiring for projects. As you may have guessed, in the four months since getting the email, my friend has gotten absolutely no work from the FSPS. He’s in their “pool,” but they’re not sending any work his way. And if they do, he expects it to be at a very low rate of pay, commensurate to what his counterparts in India would charge.
At the time, I spoke to the editorial manager in my division and said, “Do I need to worry about this happening to our division?” Not yet, she told me. But the academic publisher has been threatening to do this for years. Several years ago, we all got pay cuts to make our pay what the contractors in India were charging–it was the only way our editorial manager could keep the jobs with us instead of having them sent overseas. So the writing has been on the wall for years, and I’ve just been waiting…waiting…waiting. And meanwhile looking for as many other clients as I can–that’s how I picked up the other four that I currently have. But picking up new clients isn’t anywhere near as easy as you might think–most publishers and companies already have an established pool of contractors, and getting them to try you out is hard!
So fast-forward to this past Wednesday. What should appear in my Inbox but almost the identical email to the one my friend from the other division got four months ago. The language is almost verbatim. So it vaguely tells me that they value my work and will be adding me to the “pool of approved contractors,” but I’m pretty sure I know what that means…
I currently have about four projects with the publisher, and I’m not sure whether I’ll be allowed to finish those up (and, most importantly, bill for them!). My gut feeling is that they’ll have me finish what I already have in progress, but I won’t get any work after that. Or if I do, it’ll be at a reduced pay rate. But I guess all I can do is wait for further details, which the email tells me I will get “soon.”
This is actually a blessing and a curse. It’s a blessing because I’ve been dissatisfied with this client for a while. Let me explain… I’ve always been grateful for the work they give me. And, in fact, I enjoy the work. And more importantly, I love the people I work with through this publisher. They are a fantastic group! I’ve worked with many of them for 14 years (first in-house and then as a freelancer), and I consider many of them true friends. So I’ve kept this client largely because I love the people and like the work. But the bottom line has been frustrating me for some time. In 12 years as a freelancer, I haven’t gotten a single raise in pay. What’s more, I’ve gotten two pay cuts. And lately, they keep piling on more and more responsibilities, but no extra pay. This means I have to spend more hours on each project, but I’m paid the same amount as always. So, in essence, my hourly pay rate has been steadily dropping. It’s frustrating.
And I want to spend more time with my boys. In a perfect world, I’d be taking five years off work while the boys are little. But that isn’t an option for us, so I’ve continued to work. So hearing that I’m probably losing my biggest client–well, it has its upsides.
But then the downside: the almighty dollar. Chris’s job is great–I can’t say enough good things about it! Honestly, it’s been a real blessing to our family. But it doesn’t pay quite enough for us to support our family. It comes much, much closer than his previous job did (if we had stayed in Sacramento, we would be ruined right now, with this loss of my income–completely ruined), but it still doesn’t quite cover it. So, how are we going to make ends meet? Well, that’s the question. I’m scrambling to try to find some more work, but as I said before, it’s not anywhere near as easy as you would think. There are a lot of freelancers out there competing for jobs and not a lot of openings. I’m hitting up all of my contacts to try to get some leads, but I’m not coming up with much yet.
I’ve toyed with whether I should try to get some sort of office job, but that would require putting Sam in day care (and Theo, when he’s not in school), and I’m not at all crazy about that idea. Plus, Sam’s and Theo’s therapies require a lot of job flexibility for me, and I’m not inclined to set aside Sam’s PT and OT or Theo’s OT–I see far too much benefit in continuing those.
A night job is a possibility, but not a good one because I get so little sleep already. I’m already a walking zombie much of the time.
So what about weekend work? Chris could watch the boys while I work. I’d never see Chris, and we’d have no time together as a family, but at least we wouldn’t have to pay for day care and it wouldn’t impact the boys’ OT/PT. Well, this is a possibility, but I’m not sure what I could get. There are so many people on the job market right now, and I’m not sure where I’d find a job that’s only weekends. Honestly, I’d be miserable having no time with Chris and no family time for the four of us, but I suppose it’s an option. I’ve considered maybe offering to clean a few people’s houses on weekends–I’m pretty quick at cleaning when I don’t have kiddos hanging around to “help.” 🙂 I have a feeling, though, that most people like their housecleaning done on weekdays, when they’re at work, and that’s not an option for me with Sam. Same thing with dog-walking/dog-sitting, which I also thought of as something I could do to bring in a little money. I can’t do it with Sam (in case any of the dogs wasn’t child-friendly), and I’m not sure anyone really needs that service on a weekend–more likely during the week, when they’re at work.
Sigh…the options just aren’t great. So at the moment, we’re slashing the budget down to the absolutely bare essentials. No more guitar lessons for Theo. Probably no swim lessons this summer, unfortunately. We’re trying to keep his OT if at all possible. No eating out (though we rarely ever did that anyway). No Starbucks stops (this one might kill me–ha!). Using Chris’s more gas-friendly car instead of the van when possible. Luckily, we paid for memberships to a few kid-friendly places months ago, and those memberships go for a year, so we have plenty of free activity options for weekends. That’s something, at least! I’ll be wearing my puked-on maternity shirts for the third year in a row instead of getting new shirts. Chris will be making do with his beat-up shoes.
Ahhh, forget it–this is beginning to sound like whining. I’m not trying to whine. I’m just trying to cut $1,700 out of our monthly budget, which was already pretty lean to begin with! These cuts I mentioned don’t come anywhere close to $1,700 month, but we’ll also have reduced estimated taxes for me (since I won’t be making as much), so that will help. It’s just frustrating because we had finally reached a point where we were able to start making regular contributions to my retirement account (we’ve been good about Chris’s, but mine has just been sitting there), Theo’s college fund, Sam’s special-needs trust, and our eventual house down-payment fund…and now obviously that’s all on hold again. Harrumph.
In case you’re wondering why we don’t move somewhere cheaper–that’s our last resort. For one thing, none of us wants to move–we love it here, we have terrific landlords, and Theo does not do well with the transition of moving (as we found out last year!). But it’s also not really a very useful option because the house we’re in was pretty much the cheapest thing available in a decent neighborhood in the Bay Area…and it still is. We could get something that would be $200/month or so less, but it’d be in an area that’s a little sketchy–lots of registered sex offenders living in the area and such. (Yes, I do look at these things. When we picked this house, there was another smaller house in Concord that we also liked, and it was a couple-hundred dollars a month less in rent. But when I looked it up, I discovered that area is full of registered sex offenders. Lovely.) To save $200/month, that doesn’t seem worth it. We’d rather try to cut $200 somewhere else and stay in our nice, safe neighborhood that we love. If we were talking a savings of $1,000/month, well, that would be a different story. But $200/month? Not worth it to us. (In case you’re wondering why where we live is so cheap comparatively, it’s because it’s way off the freeway and far from transit options. Most people want to be closer to the highway or the BART station. In good traffic, we’re 20+ minutes from the highway/BART. During rush hour, it can take almost an hour to get to the highway. It doesn’t really bother us because Chris leaves long before rush hour in the morning and only goes into the office three days a week…but formost people, the commute would be a deal-breaker. And so, it’s a bit cheaper here than most other places.)
So that’s the job saga. Certainly worse things could happen–better to lose my job than Chris’s! And hey–we all still have our health! And I’ll get to spend more time with the boys! But it’s a stress, for sure…
As long as we’re talking about stress, would you like to hear about my intestines?! Sure you would!! So let’s talk about my follow-up visit to the naturopath! I had it on Friday, and I feel like I’m finally on the way to getting my health back!
As you may recall, she had me submit a stool sample for testing. (Lucky FedEx guy who got to pick up that package!!) The results finally came back, and she described them as “awesome results.” Why awesome? Because it turns out there’s nothing bad in my gut…there’s just nothing good, either. It’s pretty much a wasteland in there (pun intended!)–she likened it to an “empty dirt lot.” I don’t have any bad bacteria levels (though I have one potentially bad one that is in the okay area right now but is creeping up toward the bad level), but I also don’t have any goodbacteria. As you probably know, good bacteria is essential for healthy digestion. So without the good bacteria, my system is a mess. She said my gut is inflamed, likely due to years of chronic stress. (Antibiotic use is another culprit, but I haven’t been on antibiotics much in my life, so that isn’t likely the problem for me.) I think I handle stress pretty well, but I certainly do have it–and have for years. Both stresses I’ve mentioned on this blog and things I’ve kept private. I handle it…but I have it. Don’t we all?? I guess in my case, it’s been wearing down my gut for years.
So the problem with a chronically inflamed gut is that it can become “leaky” and permeable in spots–certain elements of what you eat can sort of “leak” through the intestines, and when they get into the bloodstream, they’re seen as invaders, and your body mounts an immune response. This is how I’ve likely become gluten-intolerant and am getting increasingly unable to tolerate other foods. And so, the treatment is to heal that inflamed gut and then repopulate the healthy bacteria, so that the same thing doesn’t happen again. The healthy bacteria can’t take hold and multiply in an inflamed gut, the naturopath (Tara) told me, so we have to both heal my gut and repopulate.
So Tara gave me a very detailed treatment plan for the next month. Number one is eliminating all gluten, dairy, and sugar from my diet. I was already gluten-free and dairy-free, but sugar…ack!! That one may kill me! Anyone who knows me knows that I have quite a sweet tooth. No cup of OJ in the morning! No sweets! No teriyaki sauce or salad dressing or any type of sauce with sugar! No bacon! Worst of all, no yummy coffee drinks! (Okay, we had to cut Starbucks from the budget anyway, but I was making them at home, too, and I can’t do that anymore!) Seriously–you may want to stay away from me for the month of March–I may be quite cranky as I gnaw on an endless supply of carrot sticks. My lucky mother is coming to stay with me for a few days later this month (when Chris is in Portugal on business, the lucky dog!), and I already told her she can look forward to lots of tasty gluten-free, dairy-free, sugar-free delights–HA!
I also need to get more protein in my diet and keep up with 4–5 servings of veggies a day. Okay, that part’s easy. And I have quite the regimen of targeted probiotics and digestive enzymes, too, as well as gut-soothing compounds. All of this is safe for Sam, by the way (since I’m still breastfeeding). Tara made certain to put together a plan that is safe for breastfeeding mothers.
I go back in a month to see how things are going. In theory, I can add sugar back in at that point. (Though let’s face it–less sugar in my life is probably a good thing anyway.) I may even be able to eat some gluten again someday, though she tells me that most people with gluten-intolerance find they feel best if they keep it to a minimum. And I should be able to add dairy back in after I wean Sam. (I’ve mostly stayed off it for Sam, though I would’ve had to go off it to heal my gut for this month, anyway.)
What’s interesting is that she specifically showed me my flora levels, and she pointed out lactobacillus in particular as being potentially problematic. That’s a good flora that I should have more of, and I don’t. The levels in the test were supposed to be at least 3 and preferably 4. They tested seven “good” flora for me, and I didn’t have a single one in the 3 or 4 range. I had a couple of 1’s (lactobacillus being among them), a couple of 2’s, and a couple of zeros (yikes!). So what’s interesting about this is that someone posted an article in one of my gluten-free forums about lactobacillus and the role it plays in gluten-intolerance just last night! If you’re curious, here’s the article link:http://www.nytimes.com/2013/02/24/opinion/sunday/what-really-causes-celiac-disease.html?_r=2&pagewanted=all&. (I have a hunch my aunt will find this interesting! My mom and sister, I think, will also find the link between celiac disease and Type 1 diabetes interesting.)
The article is long, but one thing it mentions is a study that found a decrease in lactobacillus preceded the onset of celiac disease. (Celiac disease is an autoimmune disease that is like an allergy to gluten. Gluten-intolerance is less severe–people can’t tolerate gluten without getting sick, but it’s not as severe as the response a person with celiac disease would have. So you can think of gluten-intolerance as sort of a step down from celiac disease. But they are related.) One theory is that if you keep lactobacilli high in children’s guts, you may prevent the autoimmune response to gluten that results in celiac disease. This interests me because children with Down syndrome are particularly prone to celiac disease. Because of this, we haven’t let Sam have any gluten. But it turns out that we should introduce gluten…and while I’m breastfeeding! Breastmilk contains bifidobacteria that help the body handle gluten. So in theory, we should allow Sam’s gut to experience gluten before I wean him, so that it can learn to handle gluten instead of mounting an autoimmune response. It’s not a given, but it might be one way to try to keep him from developing celiac disease at some point. So, we’ll be slowly introducing a bit of gluten here and there just to try to make his body not see it as a foreign invader. I don’t think we’re going to throw large amounts of wheat at him, but some gluten here and there….
This also makes me think that when I get my lactobacilli and other flora under control and within normal levels, I may be able to have a bit of gluten here and there, as Tara suggests. Anyway, for those interested in my gut health, I promise to keep you updated as I go through this month of detoxing, healing, and repopulating. 🙂 The naturopath was expensive (yikes!), but I feel like at least I have a direction to go to try to reclaim my health now, instead of Kaiser’s answer of, “Oh, you just have irritable bowel syndrome. Try to cut down your stress.”
Let’s wrap up this long post with some talk about the kiddos, shall we? Theo is doing well–still fighting off the last vestiges of that lousy cold that everyone has had. His teacher told me this week that she and the inclusion specialist for the district (coincidentally, Theo’s social-skills teacher) have decided that Theo should start kindergarten with an inclusion aide in the classroom with him, with the goal of phasing out the aide after a few months. Neither of them feels he can handle the transition to kindergarten without support…but both feel he will eventually do fine when the support is phased out. So that’s a good thing, I guess…though it makes me kind of sad. I guess I just hope he’s not seen as the “weird kid who had the aide” for the rest of his elementary-school career, if he starts kindergarten with an aide. But I do trust that Amanda and Dr. Lio (the inclusion specialist/social-skills teacher) know what they’re suggesting, given that they both see Theo in a classroom environment far more than I do. (Amanda sees him every day, and Dr. Lio has seen him once a week for many months.) Inclusion aides aren’t terrifically common in the district (because they cost a fair bit), so if Amanda and Dr. Lio feel one is warranted, they probably have a good reason. It’s far more common for kids to just be kept in a special day class (like he’s in now) or an autism-specific class, as that’s less expensive than providing a one-on-one aide. As I understand it, aides are reserved for when they really think a kid is ready for mainstreaming, but they just want to make sure the transition goes smoothly. So, as I said, it’s probably a good thing.
Speaking of Theo, he has recently developed a sense of justice that makes parenting him yet more challenging. 🙂 We get a lot of, “How come you can do it, Mom?” or “Why can [insert the name of a friend here] do it?” For example, lately he’s obsessed with elevators. I mean,really obsessed. He would spend all day, every day watching videos of elevators and escalators if we’d let him. His idol is some odd guy named Diesel Deucy (that’s his screen name) on YouTube who records elevators. Yes, it’s just what it sounds like–the guy records elevators and then uploads the videos to YouTube. It’s completely harmless…but boring as heck! Yet Theo loves them… Anyway, Diesel Deucy likes to push the buttons in the elevator, including sometimes the alarm button. So of course Theo wants to. And when we tell him no, he can’t push alarm buttons, we get, “Why can Diesel Deucy do it?” And he would take his iPod Touch (it’s an old, deactivated iPhone that works as a Touch) everywhere with him if we’d let him, so when we tell him he can’t bring it somewhere, we get, “Why can you bring your phone?” I can’t tell you how many times I’ve had the “The rules are different for children and adults” discussion with him in the past few weeks. I think the problem is, he thinks he is an adult! 🙂
Sam, despite spending most of the week sick, was generally pretty happy and is doing well with his sleep lessons. The strategy works really well for getting him down for naps, and I’m waiting to see how it translates to nighttime sleep. At the moment, he’s congested and feeling icky, so of course his night sleep isn’t fabulous….
We also had a big breakthrough this week–he licked a pretzel! Oh yes, people, this is progress! He normally won’t let anything but a puree touch his tender lips, but he licked a pretzel! And then wanted another one, in fact. I think salt may be the key with him. 🙂
He also looks to be working on scooting on his bottom instead of crawling. He can pivot 360 degrees while sitting up, and it looks like he’s trying to scoot forward while sitting up, too. Hmmm, he may do that long before he crawls!
We took both boys to the Bay Area Discovery Museum on Saturday–one of our fun freebies! Sam was tired and mostly just hung out in the Ergo (he later developed a fever, so I’m not surprised…), but Theo had a ball, as always. It was a lovely, warm day–nice to be outside!
Sunday we went to one of our favorite local parks and stopped in the wildlife museum there (another place where we have a membership–yay!). They have a little-kid area that Sam enjoyed, and Theo always likes puttering around there. I got to watch the gray fox being fed, which was neat–he’s a clever little guy! The wildlife museum is all rescued animals, so they have quite a few birds, a bunny, a fox, an opossum, and a couple of rats. It’s a fun little place to visit–really well done. I’m sure we’ll visit it a lot this year, since we get in free. 🙂
Anyway, thanks for reading my long doom-and-gloom post! Hopefully it wasn’t actually too doom-and-gloom–truthfully, I don’t feel doom-and-gloom. I have moments of being terrified of what our future holds as we try to figure out the finances, but I also have moments of thinking, “That job had been going downhill for a long time anyway…and now I can focus more on things that are rewarding to me, like my boys!” And so, we march on…. And as we march on, we get to see fun pictures of my boys! You remember that we got Sam’s one-year pictures taken a few weeks ago, along with some pictures of Theo (who’s almost five)? I got back a “sneak peek” of some of the shots…and oh, are they ever cute! Seriously–have you ever seen a better cake-smash picture?! Oh, Sam! Enjoy the pix in this week’s album!
FEB 24, 2013: IN SICKNESS AND IN SLEEP
Greetings, all! The plague has struck our house (okay, maybe it’s notthat dramatic…), and we’ve all been fighting a cold for a few weeks. For Theo, it turned into a fever on Wednesday morning, so I couldn’t let him go to preschool. This meant that I had to take him with me to Sam’s OT/speech evaluation at Kaiser. Not something I looked forward to, but I also didn’t want to reschedule the appointment, since it took a while to even get that one! So off I trekked to Oakland, both boys in tow…
Theo was, predictably, quite bored. He wasn’t feeling well, and it was a full hour of an OT and a speech therapist working with Sam and asking me questions. There was nothing for Theo to do, and he was bored. Which means he acted up. He wasn’t too bad, considering…but still, I had my hands full. The best part was when he got all gassy but insisted he did not need to use the bathroom. About the third time he nearly asphyxiated me, Sam, and the two therapists (one of whom is quite an attractive man, making this all the more embarrassing!), I insisted that we were going potty and left Sam in their capable hands. (Perhaps to no one’s surprise, Theo did indeed need to go.)
Anyway, the evaluation wasn’t particularly surprising. They assessed Sam at the developmental level of a six-month-old (he’s 12 months old), which is about what I would’ve guessed. So it didn’t bother me much–it wasn’t any different from what I expected. What did bother me was the issues I’m running into with getting him feeding therapy.
I make it a point not to talk politics on this blog, so I’m not going to point fingers at where the system is breaking down, where it broke down years ago, what’s going to happen in the future, etc. Instead, I’ll just say that in my opinion, the healthcare system has been a mess for years, it is currently still a mess, and I hope it changes for the better in my boys’ lifetime. And I’ll tell you where it stands at this moment in relation to Sam. His swallow study showed that liquid does penetrate his airway. Because of that, it’s entirely possible that he aspirates liquid…even though he didn’t do it during the five-minute test. So, the therapists feel that he could benefit from swallow therapy. And, he won’t touch textures at all–he will only eat the smoothest purees. This is not uncommon in babies with DS–they have oral sensory issues that can cause feeding difficulties. And so, I feel even more strongly that feeding therapy is in order. Why not work on this issue while he’s young, so we don’t end up with a three-year-old who will only eat, say, vanilla pudding? Or a two-year-old who ends up having a G-tube (gastrointestinal feeding tube) put in because he doesn’t get enough nutrition through his limited diet, like one little boy in my DS group?
Well…the powers that be at Kaiser aren’t necessarily in agreement. The department head said, “Feeding problems are common in kids with Down syndrome. This isn’t something we need to address. Besides, he’s in the 50th percentile for weight on the Down syndrome growth charts, so he must be fine.” And the Regional Center said, “We don’t provide speech therapy [which is how we’d get feeding therapy–it’s all related] until age 18 months. Before then, we consider it a medical issue that your insurance should cover.” And so, I have the two therapists who have evaluated with Sam trying to find a loophole to get him some feeding therapy. They’re arguing the liquid-penetration angle, and I’ve added “But he’s iron-deficient, and how can I feed him iron-rich foods when he won’t eat many solids?” to their arsenal. The bottom line is that he may not qualify for feeding therapy. And if he does, I have to go all the way to Oakland for it, because as of last month, Kaiser will no longer give referrals to third-party clinics for feeding therapy. Sigh…what a pain. Theo’s OT clinic where he goes happens to have a certified swallow specialist on staff who has an opening at the very same time as Theo’s appointment and who could work with Sam. And Kaiser refers to them for OT, so I know they’re set up as a Kaiser vendor. It’s perfect! But no…
It frustrates me because I’m a big proponent of early intervention. I know some families aren’t a fan of it–some feel as if frequent therapy appointments are tiring, hard on their family, and not really worth the effort. Others feel as if the work they themselves can do with their kids is more beneficial than what outside therapists can do. And I really do think that each family has to decide what is best for them and for their child. But I’m a fan of early intervention because with both of my boys, I’ve seen the good it has done. In the span of less than a year, Theo has gone from being miserable and unable to cope in a preschool classroom to being a happy, confident little boy who loves to go play with his friends at school, who has made major progress in reading social cues and being able to use them himself, and who has made tremendous progress in areas where he struggles (such as fine-motor tasks). He’s learned how to handle his own emotions far better than he could a year ago, too. Some of that is maturity, but I think some is also due to what he’s learned at his social-skills class. And whereas he used to be frequently overwhelmed by sensory input, he’s a lot better able to handle it now.
With Sam, his early intervention has helped him learn how to sit up, and he’s on the brink of crawling. It’s also helping him to vocalize, and he’s learning to communicate with us through the use of nonverbal cues and some early sign language. And I think early intervention is going to be key in helping him move into crawling and later walking…and even more than anything, I think it’s going to help him learn to communicate.
So, that’s why I would really like to get him some feeding therapy before his aversion to textures and his difficulty managing liquids turn into real food-aversion issues. Why not attack this feeding difficulty head on, early on? Why not try to head off a problem before it becomes larger? The logic escapes me. But then, the logic on many things escapes me. And so we muddle on. And if I get lucky, I get to drive to Oakland every week for feeding therapy. I’m not excited about that, but I suppose it’s better than no feeding therapy at all….
But let’s move on to happier topics. How about sleep?? We had our sleep consultation this week! You may remember that I mentioned we were getting a free consultation with a sleep specialist, since Chris and I (mostly Chris) are editing her e-book. So, our consultation was Thursday. It was rather fascinating, actually. I haven’t had a chance to read Dawn’s book yet (Chris is doing the first pass on it), so I didn’t know a whole lot about her strategy other than the fact that it is not a cry-it-out strategy, but it’s also not a fully attachment-parenting strategy. Which pretty well fits with my parenting style–I’m not fully attachment-parenting, but I’m also not a “spare the rod, spoil the child” type. I’m in the middle of the road, maybe leaning a bit more toward the attachment side.
Anyway, Dawn spent most of the day with us on Thursday, as she wanted to do two sleep lessons with Sam. (Each nap is an opportunity for a sleep lesson, as is bedtime.) Since then, I’ve been using her strategy, and I’m actually pretty pleased so far.
A little background for those who aren’t in the midst of actively raising wee ones right now. Current sleep theories fall broadly into two camps: cry-it-out and no-cry. There are variations on the themes, but most fall into those categories. With cry-it-out, the idea is that you watch for the baby’s tiredness cues and then put him down, leaving him to cry himself to sleep. (Some methods have you go in every five minutes or so to reassure the baby that you haven’t abandoned him.) In theory, a few days of this is supposed to result in a baby who has learned how to self-soothe.
No-cry strategies obviously don’t have you let your baby cry himself to sleep. There are many ways to supposedly achieve sleep with no crying, but in my experience with Sam, none of them has really worked. I truly think it depends on the child–with Theo, no-cry solutions worked pretty well. There were bumps in the road, but generally they worked. With Sam…not so much. He would fall asleep without too much issue, but he wouldn’t stay asleep. And that was really our problem–not necessarily that he woke frequently, but that he couldn’t soothe himself back to sleep.
The obvious answer was, “Well, he needs to learn to self-soothe!” But how? He doesn’t take a pacifier–that thrusting tongue thrusts it right back out! He doesn’t take a bottle, and even if he did, I’m not comfortable leaving him in the crib with one because he chokes on liquids. He has a “lovey” in his crib that he likes, but that alone wasn’t enough of a soothing item. He also has a little light-up seahorse that plays soft lullaby music that he likes–but again, not enough to self-soothe. He doesn’t suck his thumb, so that was no help either.
So here we are with a baby who wakes up all the time (no surprise–he has reflux and apnea, both of which cause frequent waking)…and he has no tools for getting back to sleep except for nursing, which calms him down. Pat his back, you say? Well, every time we did that, he would wake back up within 15 to 30 minutes. At least nursing would buy us one or two hours…on rare occasions, even three! And here we are with a very tired mama who is exhausted after seven months of crappy sleep…far too exhausted to get up every 15 to 30 minutes to pat his back over and over and over….
But I just couldn’t see doing cry-it-out because it didn’t make sense to me–I leave him to scream, and he somehow figures it out? Meanwhile, I feel like an awful person for abandoning him! And going in every five minutes to “reassure” him just made it worse! Every time we’d try it and I’d go in to pat his back, he’d crank back up into high gear. It was awful!
Dawn’s strategy is a sort of hybrid approach and actually had reasoning behind it that made sense to me, so I was willing to give it a shot. Her approach is all based on making the baby like his crib, so that when he’s put down for a nap or bedtime, he’s happy to be there. Instead of wailing for his mother’s arms, he thinks, “Oh–my bed! I like this place, too. Okay, I’m fine.” And I can get behind this idea because it’s what we did with Theo–ensured that his crib was always, always a happy place. And it worked! With Theo, though, we had more tools at our disposal. We could give him a bottle in bed, and it was soothing to him. (Yes, I know that’s a huge no-no, but it worked. So shoot me…)
So how do we make bed a happy place for Sam? Soft toys, mostly. He’s old enough that he can now have small, non-chokable items in his crib, so we put in a couple of soft stuffed animals (with nothing he can chew off and choke on), as well as two “loveys” (soft pieces of blanket that he can cuddle). Normally, Dawn recommends including a cup of water, too, but given Sam’s issues with liquids, we opted against it.
Crib play-dates are a big part of her strategy. When trying to establish the crib as a fun place, she recommends frequent very short “play dates” where you put the baby in his crib with all of the lights on and play with him–show him his toys, let him show you his toys, etc. Just two minutes or so at a time–or for however long he seems happy. Lights on so that he knows he’s not expected to sleep at that point–he’s just there to play for a few minutes.
And establishing a routine with strong cues is the other part of it. We had a bedtime routine already, so it was a simple matter of adapting a few things. Three to five minutes of pre-bed cuddle time before each nap or bedtime in a room that is not where the crib is. (I hold him in my arms, rock back and forth, and sing “Twinkle, Twinkle Little Star” softly.) After that, we go straight to the bedroom for rest. The room should already be set up with loud white noise going (at first–until the baby is fully entrenched in the idea that bedtime is happy time!), and a dark room but with enough light (from a nightlight or whatever) that he can see his way around the crib. I pause at the door of the bedroom and tell him, “Mama’s going to be quiet now–it’s your rest time.” Once we enter the bedroom, I don’t speak to him again. I can smile at him to reassure him, and I can provide “love touches” (firm touches to let him know I’m there–Dawn recommends against patting because babies tend to wake up when they realize the patting has stopped, which we’ve found to bevery true with Sam!) to calm him, but no more talking.
I put him in the crib, make sure he has a lovey and a toy, and then I sit down where he can see me and absorb myself in some activity (reading on my phone). At this point, I don’t make eye contact with him and I don’t touch him unless he cries in distress. If he cries in annoyance because he just doesn’t feel like going to bed, I leave him to fuss. If he cries in distress, I go to him, give him “love touches,” make eye contact with him, and smile so he knows I’m there for him. I don’t pick him up, though–I leave him in the crib.
How do I know the difference in cries? Dawn explained it, and she seems to be right. If he’s crying in annoyance, he is engaging in some form of self-soothing activity when he does it–maybe chewing his fingers, reaching for a toy, playing with his feet, etc. If he’s crying in distress, his body is stretched out flat, and he’s not doing anything to attempt to self-soothe. If he’s crying in frustration, he should alternate between crying and playing. If he’s in distress, he will simply cry. And in the four days I’ve been doing this, she seems to be correct. Only twice has he cried in distress–both times I went to him, gave him firm-pressure touches, smiled at him, and he calmed down. Other times he has cried in frustration, but it has been short-lived. He quickly loses interest and starts playing with a toy, babbling, or grabbing his feet. And in a short time, he falls asleep peacefully, usually mid-babble.
When he wakes up after a nap (or nighttime), I’m to get him right away, to let him know that I’m responding to him. I’m to turn on the light and turn off the white noise, so that the cessation of sound and the presence of light are firm cues to him that it’s okay to wake up and get up out of bed.
So I’m cautiously optimistic that there is value in her strategy. Sam seems to be learning that even though I’m not picking him up out of bed when he fusses, I’m staying there until he falls asleep. This does indeed seem to give him comfort, and he actually seems to enjoy playing and chattering in his crib now…even after only four days. I’m pretty hopefully that we’re well on the way to having another baby who enjoys his crib! If nothing else, I think her strategies work very well (for us) for getting a good nap and bedtime routine down. Our routine before worked, but it was hit or miss–sometimes he would go down without a peep, and other times he would cry and cry, and it would be quite a battle to get him calmly down to sleep. With Dawn’s methods, he’s pretty regularly going down without much fuss at all. A little protest for a minute or two, and then happy playing until he falls asleep. It’s truly lovely!
So how does this help the night-waking problem, you ask? Well, in Dawn’s theory, working on this crib-comfort and sleep lessons during the day and at bedtime translates to a baby who wakes in the middle of the night, realizes he’s in his happy place in his crib, and thinks, “Oh, okay–there’s still white noise on and no lights, so it’s still rest time. I’ll just play.” And then he falls back asleep without needing Mom to get up and nurse him. Will this work? It remains to be seen–I’m only four days into it! I can see how it could work, though. Dawn is a sleep nanny and ran a day care for years, so if she claims it works, I assume it probably does for many babies. I hope it does for Sam! I do like the fact that her method doesn’t require me to do anything different than I’m doing in the middle of the night. Her theory is, “You do what you need to do to get him back to sleep in the middle of the night. You can’t afford any more sleep deprivation. The daytime lessons will eventually gel into a sleep pattern that results in better nighttime sleep for you and your baby.” I can get on board with that–I’ve been telling Chris for some time that I wasn’t sure how I could do any method of “sleep training” in the night, because I’m so darn exhausted that it’s all I can do to haul myself out of bed, nurse him for 10 minutes, and then collapse for another hour or two of sleep. I really wasn’t up for spending hours in the middle of the night trying to sleep-train him.
Sorry for the long dissertation on this, but I have lots of mommy friends who battle sleep problems, so I thought they might be interested. I’ll keep you all posted on how this little experiment goes. I’m cautiously optimistic–so far, this method has shown more promise than anything else we’ve tried!
Anyway, let me wrap up by telling you briefly about our weekend. Saturday we started out the day with soccer, where Theo scored fourgoals–two for his team and two for the opposing team. 😉 I love soccer with the littles–it’s so much fun to watch them play! And the kids seem to just have a ball (pun intended). Theo loves it and has actually gotten to be fairly good at it. Most importantly, he plays really well with the other kids. This week, one of them walked up to him at the end and said bluntly, “I like you!” Another one followed suit. I thought it was really sweet. 🙂
Next was Operation Garage Overhaul. We decided to convert part of the garage into sort of a “sensory playroom” for the boys. Theo obviously benefits from sensory play, and Sam has a double-whammy against him in terms of being predisposed to sensory-integration problems: a brother and mother who had/have them, and a diagnosis of Down syndrome. Both things put him at higher risk of having sensory issues, so it’s his OT’s feeling and mine that we might as well do a lot of sensory-integration activities with him when he’s young to try to head off possible issues in the future. (There’s that early intervention again….) Anyway, to put together this playroom, we needed to clear space in the garage. So, we spent most of Saturday doing that–and it’s much cleaner now!
Sunday, we went for a short hike on Mt. Diablo. Theo, Sam, and I had gone on an impromptu hike earlier in the week at a local park, and Theo had a wonderful time, so we thought he’d enjoy another hike on Sunday. Well…not so much. He kind of complained the whole time. But I can’t really blame him–he’s had that lingering cold all week, and he’s just been rather tired and rundown from it. So I don’t think he was feeling 100%. We’ll try again another time, when he’s feeling better. Sam at least enjoyed the ride on my back. 🙂
I rounded out the weekend by getting a massage! My friend Lisa had given me a massage giftcard for my birthday, and I used it on Sunday afternoon. After two days spent cleaning the garage and hiking with an 18-pound baby on my back, I definitely needed it! Ah, it was heavenly…
So that was our week! Guess what extra bonus you get this week? A short video clip of Sam harassing his big brother. I love it!! He’s being the typical pesky younger brother, trying to get Theo’s attention and his iPod! Go to the Still More Videos page to see it. Happy last week of February, all!
FEB 18, 2013: VISITORS!
Well, poor Sam spent much of this week sick. We’ve all had a mild cold around here, but Sam was hit the hardest. He was fine for a while–mostly just congested. But last weekend, he was so congested that he couldn’t breathe out of his nose hardly at all, and thus he couldn’t sleep. And then it started to drain, which I thought meant he’d feel better soon, but instead it turned into a little infection. When he started running a fever on Tuesday and broke out in a rash, I took him into Kaiser, and sure enough, he had a double ear infection. So, more antibiotics for him…sigh…
As it turns out, his one-year appointment was two days later, so his pediatrician was able to recheck his ears and his funky rash (more on that in a moment). All seemed okay, so I guess the antibiotics are doing their job. I also learned that Sam’s official one-year weight is…drum roll, please…17 pounds 10 ounces! He’s still not even on the regular growth charts, but he’s in the 50th percentile for height and weight on the Down syndrome charts. In comparison, Theo was 21 pounds 11 ounces at one year–a full four pounds heavier! But they were close to the same height, so Sam is just a skinny chicken. 🙂
Sam’s one-year appointment included a full blood panel–standard at this age to check for anemia, I believe. But boy, did he ever give us a scare! Let me explain…
Leukemia is the specter that lurks in the minds of pretty much all parents of kids with Down syndrome. Kids with DS are 10 to 30 times (depending on which estimate you believe) more likely to get leukemia than their typically developing peers. The odds are still something like 1 in 100, but when you consider that the odds of having a baby with DS are 1 in 400 (or 1 in 700 if you’re younger than 35 years old!)…well, you can see how those of us who had babies with DS don’t really put much stock in odds anymore. 😉
The good news is that there is something about having an extra 21st chromosome that makes kids with DS respond better than typically developing kids to the treatment for leukemia. The cure rate is around 80% for our kids. But then, there are those odds again–80% doesn’t sound so good when you realize that 1 in 5 kids with DS who get leukemia don’t survive. Those of us who already drew the 1 in 400 strawreally don’t like those odds.
So you can see how we live in fear of leukemia. And one of the very common first signs of the two types of leukemia that strike our kids is a rash called petechiae. And Sam has had a rash that looks like petechiae for a couple of weeks. It flared up when he was sick a couple of weeks ago, and the advice nurse told me it was probably a fever rash. And it faded (but never fully went away). And then this week, when he got a double ear infection, the rash flared up again and spread, covering his torso and going onto his back. This made me very nervous. The doctor we saw for the ear infection said it was a heat rash, but I didn’t buy that–the weather hasn’t been hot, and he was wearing a cool onesie, not a heavy outfit. When we saw his regular pediatrician two days later for his one-year appointment, she was a little concerned about the rash but said, “It appears to blanch when I touch the spots, which is a good sign. I think it’s a viral rash. But let me know if it doesn’t go away in a week.”
So I wasn’t thrilled about this mysterious rash…and then when Sam’s bloodwork results came in in the wee hours of the morning (they come via email, so I got them when I was up feeding Sam at 3am), I was even more worried. His white blood cell count was low, his red blood cell distribution was off, and his platelets were high. In addition to that, his iron was really low. When I Googled (I know, I know–BAD idea!) all of these things, I kept coming up with leukemia. That is, all of these results had other possible causes…but they all also had leukemia as a possible cause.
And so we were terrified. We tried not to let our imaginations run wild, but the rash plus the funky bloodwork…it was scary! I emailed his pediatrician and asked her to please get back to me ASAP to talk about the test results, and thankfully she called me back later that afternoon and put me out of my misery. She’s pretty certain that the low WBCs and odd RBC results are both due to him currently having an ear infection. And as for the iron–well, he’s just iron-deficient. So, we’re now giving him iron drops and feeding him as many iron-rich foods as we can, and we’ll redo the bloodwork in three months. Or sooner if I panic. 🙂 The particularly scary thing about the two types of leukemia that typically afflict kids with DS is that they are both acute leukemias (ALL and AML–the “A” in both types stands for “acute”), which means that if they are ignored and left untreated, they can be fatal in a matter of weeks. So yes…I will be erring on the side of caution here. Luckily, Sam’s pediatrician is wonderful and tends to be cautious too, so I’m sure if I have concerns, she will be more than happy to do follow-up bloodwork to set them to rest.
Neat little fact about people with DS and cancer: Although our kids have a much higher chance of getting those two types of leukemia, if theydon’t get them, their chances of living life cancer-free are pretty good! There is again something about that extra 21st chromosome that makes people with DS less susceptible to most types of cancer–it is only these two types of leukemia that really pose a problem. So if Sam makes it to age 5 or so without getting them, he is probably in the clear cancer-wise!
Moving on to Theo, it wasn’t an uneventful week for him, either. On Friday, he was scheduled to have two cavities filled and a tooth pulled. They were going to give him laughing gas and try it that way. I was skeptical but went along with it. As it turns out, I was right to be skeptical–there was no way they could do the procedure with just laughing gas. He was far too nervous. And they don’t want to traumatize him (nor do I!), so we had to reschedule for a day when they could do it with him under conscious sedation. (That’s where they give you drugs to make you feel as if you’re going to sleep. In reality, you’re conscious for the whole procedure, but you’re unaware of what’s going on and you don’t remember anything after. In theory. The last time I tried to have this done, I “woke up” in the middle of the procedure, and I remember quite a bit of awful detail about it. But hopefully it will work better for my son than it does for me!) Truthfully, I’m not thrilled about sedation of any kind. But I’m even less thrilled at the prospect of him having a lifelong fear of going to the dentist because we had to force him through getting two molars filled and a tooth pulled. So, drugs it is. If nothing else, it should be entertaining. Even on the laughing gas, he was funny. He was talking really…slowly…and making all kinds of amusing observations. The staff in the office love him because he’s so talkative, and the receptionist was very disappointed that she won’t be working the day he comes back!
We also had an exciting Wednesday of getting our taxes done! Woohoo!! Never my favorite day of the year. But it wasn’t bad. We owe (as we always do), but we owe less than we expected, so we’re happy. I told Chris he’s the only person in the world who would be downrightgiddy about a $4,500 tax bill! And it was fun to bring Sam to see our tax lady–she has a granddaughter with Down syndrome, so she loves Sam. And in fact, her daughter (the mother of the little girl with DS) works with her, so she got to see Sam, too. The daughter with DS is about eight, so it’s always fun to hear stories about her! We didn’t take Theo to the appointment–he would’ve been horribly bored. Instead, he got to hang out with Grandma Diane, which he was very happy about. When we left, he announced, “I just want to stay here with Grandma Diane for like about 10 more hours!” Ha ha, poor Grandma Diane probably would’ve been ready to collapse after 10 more hours of elevator chat! (Theo’s latest obsession is elevators. He can talk about them for hours. Schindlers are his favorite–used to be Dovers, but now it’s Schindlers. Don’t ask me why. If you ask him, you’ll just get an answer like, “Because they are.”)
But the best part of our week was a visit from Auntie Lisa and Cason!! On Saturday, after soccer, we drove to San Jose and spent a few hours with Grandma Kathy and Papa while we waited to pick up Lisa and Cason. (They spent a night with her Dad in Santa Cruz, and we picked them up in San Jose.) Chris and I got a quickie date to Kaiser (feel the romance!!) to pick up iron drops for Sam out of it–Grandma and Papa watched the boys while we ran over there. We also stopped for burgers, so that was fun. 🙂 And in the late afternoon, we picked up Lisa and Cason. Theo was so excited to see his buddy Cason! Cason was sad to leave his “Ampa,” but he got over it by the time we got back to the house and he saw all of Sam’s and Theo’s toys. 😉
Theo and Cason had a blast together–they were like two wild men!! Lisa and I took the boys to the Bay Area Discovery Museum on Sunday (and out to lunch–were we insane?!), and you’d think they would’ve slept for eons after how much energy they got out there, but no…they stayed awake all the way back, chattering away. It was so cute to see them together! Cason has just turned two, but he’s talking quite a bit, and he kept saying, “Feo? Feo?” every time he wanted Theo. And he was imitating what Theo was saying (God help Lisa and Chris!), and the two of them had a marvelous time laughing about poop and diapers. (They’re such boys!)
Once we got the boys down for the night, we stayed up late watching movies and playing games. Just kidding. We’re pathetic old people who fell asleep pretty darn early! We managed to stay awake to eat dinner and chat a bit (and polish off a little sangria!), but we went to bed pretty early. Those boys wore us out!
Lisa and Cason flew home Monday morning, much to our chagrin. Theo very much wants to go to Seattle now to visit them! We’ll have to see whether we can scrape up some travel money….
And so ends our week!! Hope you are all having a good one!
FEB 10, 2013: THE BIG ONE!
Well, we officially have a one-year-old in the house now! And with Sam’s advanced age has come a little attitude! He’s reached the delightfully normal stage of knowing his own mind and getting ticked off when he doesn’t get what he wants. 🙂 I don’t think he’ll ever have the iron will of his older brother, but he certainly has a little temper when he wants to. Usually it involves not being held if he wants to be held…or, conversely, being held when what he really wants is to be down.
It also sometimes involves food and drink, as it did one day this week, when he kept fussing at me while I tried to feed him. This is a common occurrence, and I rarely know exactly why he’s fussing: Is he hungry and I’m not feeding him quickly enough? Is he not hungry? Is he having reflux pain? Is he trying to poop? Am I–god forbid–trying to get him to eat something with a slight bit of texture?? Hard to say, and he often spends a lot of mealtime glaring at me and whining. But one day this week, he made his desires known, and it was delightful! He kept fussing and whining, so I said, “Okay, guess you don’t feel like eating. You can hang out in your high chair while I clean up the dishes.” He scowled at me and then slowly moved his hand toward his mouth. And it dawned on me that he appeared to be making the sign for “drink.” I said, “Oh, do you want a drink?” and got him a cup of water. He took a drink and then proceeded to eat the entire bowl of food I had for him. I guess he just wanted a drink before starting his meal! And I was happy to oblige once he made his wishes known! It’s just hard to tell what he wants sometimes. I hadn’t been giving him many drinks lately because I hadn’t yet found the thickener to thicken his liquids (and he still nurses quite a bit, so I don’t worry about him getting dehydrated), but apparently that was what he wanted. Go figure. He looked at me as if I should’ve figured it out long before….
Sam’s birthday was pretty low-key. It was Monday, and Theo was in school. He had OT with Christina (which went well until she had theaudacity to help him get his hips into crawling position–at which point he stuck his lower lip out, looked at her as if she was pure evil, and let out an unearthly howl…never to calm down again until she left the house. Yes, he’s a diva). Then he took a little nap, and then Chris and I took him out to lunch with us. We went to my favorite gluten-free-friendly place in Walnut Creek and then to Kara’s for gluten-free cupcakes (chocolate coconut for me, and a cookies-n-cream non-GF one for Chris). Then Chris took the afternoon off so that we could take the boys to the park after Theo got home from school. And then we gave Sam his presents and cake (which he happily smashed, although he had no interest in eating any of it), and that was our day!
Tuesday was my Very Long Day to Drive All Over Kingdom Come. We left the house at 7:30 to make the long drive to Theo’s OT appointment at 9. Then it was back to Concord to drop Theo at preschool. Then Sam and I drove into San Francisco and circled the Financial District looking for reasonably priced parking, which was another hour in the car. (We finally found a garage for $18, if I was willing to hoof it eight blocks to Sam’s go-see, which I was to save the measly $7 difference in parking fees. Note to self: Next time take BART.)
Sam’s go-see went fine, I guess–I don’t know yet whether they’re using him for the ad campaign, but I guess I’ll find out by Monday, since the shoot is on Tuesday. (I believe it’s for the Old Navy website, but don’t quote me on that. I know it’s for Old Navy, but I’m not certain of the details beyond that.) There were a lot of babies there (so much cuteness in one room!), and we all basically just met the photographer and staff for about two minutes each, while he took a couple shots of the baby and they asked us a couple of questions about naptimes and when our babies are usually in the best moods.
The go-see was an…interesting…experience. The go-see itself was fine, but being around some of the other mothers was a little unsettling. I think I got befriended by the “mean girls,” which I certainly didn’t intend. When I got there, another mother helped me out on a couple of things–she, too, was new to the process, but she had gotten there earlier than me and had figured out the process. So I thought, “Well, she seems nice!” and I sat near her. We started talking a bit, and then another mother sat down and started talking, too. And I quickly realized that I had somehow become part of a “mean girl” clique, which is soooooo not my thing. These women, you see, were only talking to the white mothers. I got to be part of the group because I’m white and have a cute baby. They were sizing up all of the other babies and making commentary about which ones were cute. Um…they’re all cute! They’re babies! Babies are inherently cute! That’s how they survive, even though they keep us awake all night long and spit up all over us. 😉
But worse, I realized that they weren’t speaking a word to any of the minority parents sitting right next to us. I don’t know that it was outright racism, really–probably more just that they weren’t straying out of their comfort zone. But it felt very uncomfortable to be sitting in a cluster with three white mothers, an Asian mother, and an African American father, and have them be completely ignoring anyone who wasn’t white. So I started talking to the other parents, and then the “mean girls” joined me. That’s why I think it probably wasn’t so much outright racism as just being in a sort of “white bubble.” Once I started talking to the other parents, they did too–but for whatever reason, they didn’t do it on their own. It was weird. I’m not used to that kind of attitude, having lived most of my life in relatively ethnically diverse areas.
Anyway, I suspect I will run into the “mean girls” again somewhere along the way, since baby modeling is probably a small world…and I can’t say I’m looking forward to it. They were perfectly polite to me, but I got the feeling that they’d stab you in the back pretty easily, you know? Not the type of people I’m normally friends with. (Oooh, look at me, sounding all snotty and judgmental about who I’ll be friends with! Maybe I’m just as bad as they are, eh?)
After the go-see, it was back in the car to head back to Concord to get Theo registered for kindergarten. Our school district’s registration was Tuesday, so we had to register Theo for something in the district to hold a spot for him…even if we ultimately end up deciding on a private school. We finally settled on Cornerstone Family School, a small program within the district that is a parent-participation enrichment program. In case you’re wondering what that means, it’s basically a very small program that requires parent participation so that the students get more individualized attention and they can do more enrichment activities in addition to the standard curriculum. In our district, most schools go on one field trip a year. At Cornerstone, they try to do one a month. And they have class segments on music, cooking, art, community service, sports…and on and on. Parents are required to volunteer 60 hours a year, which is usually done in the classroom, but can include other activities as well (fundraising, chaperoning field trips, etc.). The parent-participation component is a mixed bag for me–on the one hand, I think I’ll really enjoy it, and it’s a good way for me to devote some time to Theo without Sam being a part of it. On the other hand, Sam can’t come with me when I volunteer, so I’ll need to figure out what to do with him. I’m thinking we may have to hire a babysitter to come two mornings a month while I volunteer or something. I don’t know–we’ll figure it out.
The big selling point to Cornerstone is that the class size is small, which is something that is so important for Theo. Instead of 32 students per kindergarten class, there are 20 students–10 kindergarteners and 10 first-graders. The classes are combos: K/1, then 2/3, and then 4/5. (Middle school starts in sixth grade in our district.) So Theo’s class will be 10 kinders and 10 first-graders. They will do a lot of activities together, but they will also be split apart for a fair bit of instruction. So atmost, he’s in a room with 19 other kids…but a lot of the time, it will be just 9 other kids. And because there will often be parents volunteering in the class, the adult-to-student ratio is pretty good. We think that small class size is going to make a huge difference for Theo–we were pretty scared about moving him from his current class of 6 into a class of 32. We feared that all the progress he has made would go down the tubes, because he tends to get very overwhelmed in large groups.
Also, the small class size and parent participation allows the teacher to individualize instruction for the students more than a typical kinder teacher can. They create individual work packets for the students each week, so a student who is ahead in one area can work ahead, and if he’s struggling in another area, the packet can address that.
In reading parents’ reviews of Cornerstone online, the consensus was generally positive, and one parent called it “the best-kept secret in our school district.” So we’re really pleased that Theo got in. That’s not to say there aren’t downsides to it and concerns that we have, but in general, it seemed the best fit for Theo in our public-school district.
That said, we are still looking at one private school as well. I sent off Theo’s application on Thursday, so hopefully they’ll contact us for an interview. “Interview” sounds so formal and weird to me for kindergarten, but I guess that’s what they call it when it’s a private school…. Anyway, it’s a private school that’s been around for 30 years and seems pretty universally loved among parents who have sent their children there. (There’s a great resource called the Berkeley Parents’ Network where you can research pretty much anything kid-related in the East Bay and get lots of feedback. It’s where I found Theo’s awesome music class that he used to go to, and I’ve used it for a lot of other research, too–they have TONS of info on local schools.) And the tuition is actually somewhat affordable–only about 30% of the typical private-school tuition cost in this area. The school uses a combination of Montessori and Waldorf philosophies in their teaching methods, which intrigues us–we’re hoping they’ve taken the best of both methods and created something really wonderful. We also like that their kindergarten is notstrongly academically focused–instead, it’s focused on helping kids prepare for first grade in areas such as being able to pay attention for longer stretches, being able to participate in a classroom setting, etc. They do follow a pretty typical curriculum, but there’s just not the push to have your kid reading Shakespeare by the time he finishes kindergarten, which is common in many schools around here. (I’m exaggerating, but the schools in this area really do tend to push academically. A lot of parents in this part of the state are very driven to have their kids succeed academically…as early as possible. And so the schools respond to that pressure and start strong academics pretty early…sometimes too early, in our opinion.)
One thing that I really like about this school is that part of their core philosophy is teaching children kindness and compassion. Theo has a kind, compassionate heart already, and I very much want him to keep that! And I think a focus on that is missing from a lot of schools nowadays, so I like that this school keeps it at the forefront. And they specifically mention full inclusion for kids with learning challenges due to autism, learning disabilities, and Down syndrome, so that was a big plus to me. If Theo goes there and we like it, Sam could likely go too!
This private school isn’t without its drawbacks, either. I’ve learned that there is no perfect school! But the two we have it narrowed down to look to be good potential choices for Theo, so we’ll see how it all plays out.
And speaking of Theo and schools, if you want to appreciate just how far your child has come, review his district assessment from a year ago! I had to send that in to the private school, and I was reading through it after I made the copies. Yikes. I knew Theo had come a long way in ten months, but I don’t think I had realized just how far until I read that assessment. It is all true…but it’s like I’m reading about a different kid! I had sort of forgotten just how rough things had gotten for him and how much he was struggling. When I read through it now, I can see just how much he has benefitted from intensive OT and his preschool program, and I’m so glad that we made the choices we did. Some of the improvement is undoubtedly due to normal maturing, but I’m certain that a lot of it came from his hard work in preschool and with his OT, and I’mso proud of him!
I sort of hated to send it to the school, but they specifically requested it, and I wouldn’t be doing anyone any favors (least of all Theo) if I hid any challenges he has from the school, so I went ahead and sent it. Thankfully, the application also asked us to write up anything we wanted them to know about Theo and what our hopes for his schooling were, so I was able to say (in a much more eloquent way), “He’s a terrific kid, and he has made tremendous progress in the past year, so this assessment isn’t terribly representative of Theo right now. If you meet him, you’ll love him!” So now we just wait and see whether they are interested in possibly having him in their school.
We rounded out the work week with a trip to the dentist for three out of the four of us. (Chris was the lucky one who didn’t need to go!) Sam and I did fine. Sam has NO teeth on the horizon, so we have that sleep disturbance to look forward to sometime in the future…as if his sleep isn’t bad enough already. Theo, on the other hand, needs to have his front tooth pulled (the one he knocked up into his gums this summer), and he has two cavities in between two molars in the back of his mouth. I feel terrible about this, because he’s gotten really comfortable at the dentist’s office, and I fear this will make him anxious about the dentist going forward. They’re going to use laughing gas (ha ha, that will be something to see!), so I’m hoping that helps, but you never know. I guess we’ll find out next Friday, when he goes in for the extraction and fillings. Poor guy!
Speaking of Sam’s sleep, we had something funny come about this week. One of Chris’s former coworkers does freelance editing projects to earn extra money on the side, and she was offered a book that she can’t take, so she referred the author to Chris. And the book just happens to be on…drum roll, please…baby sleep habits! She’s a baby sleep coach, and she lives in Oakland. So, before we edit her book (we’re team-editing this one, with Chris doing the bulk of the work and me consulting), she wants to do a four-hour sleep consultation with us, so that we can get an idea of what she does and can understand what she’s trying to express in her book. What?! Four hours of free consultation on how to get Sam to sleep better?? SIGN ME UP!!!! So we’re doing that a week from Thursday. I’m curious to see whether she suggests anything I’m not already doing. I do know that she’s much more an attachment-parenting type than a cry-it-out type, so that goes along with my own philosophies. Should be interesting…
And speaking of Sam’s sleep, he had the lousiest night ever on Saturday/Sunday. Granted, there was a good reason–he has a cold and is very congested, so he kept waking up because he couldn’t breathe through his nose. But it was awful. I got two hours of sleep. Yes, two. He slept restlessly until 10:30, when I went to bed, and then he was up from 10:30-3:20 a.m. At 2:00 a.m., in desperation I loaded him into the van and drove down the street to our 24-hour Safeway to buy Vicks VapoRub. I had heard from a number of people that you can put it on a baby’s feet, and it will help with coughing and congestion. Supposedly it’s a miracle cure, and I needed a miracle! Well, I can’t say it was amiracle, but it did help clear some of the congestion–enough that he was finally able to fall back asleep at 3:20. He woke again at 4:20, 5:30, and 6:15, and then was up for the day. So I got two broken hours of sleep from 3:20 to 5:30. I got up at 5:30 because I was coughing so much that I was afraid I’d wake him! So as I type this (Sunday night), I’m feeling the pain of two hours of sleep. Yawn…please excuse any typos….
Sam’s cold is actually pretty minor–he shows pretty much no signs of being sick except rosy cheeks and that darn congestion. No fever, no runny nose, no watery eyes, no more fussiness than usual. Just nasty congestion. So, we went about the weekend as normal. Saturday (before we even knew he was sick), we went to soccer and then spent a couple of hours at Children’s Fairyland. Theo has actually decided he likes to watch puppet shows, and he’ll sit for an entire 10-minute show. (I guarantee he wouldn’t have done that six months ago!) Then we babysat his friend Tico in the evening.
Sam’s cold became apparently after we put him to bed Saturday night, but by then it was kind of too late to cancel our Sunday plans. If he had been really sick, of course we would have…but he actually seems pretty good. So we kept our appointment with our photographer in Roseville to have his one-year pictures done. (And, since Theo will soon be toothless in the front, we had her do a couple of five-year pictures of him while he still has a full smile!) And I’m actually really glad we kept the appointment. Despite a lousy night of sleep and feeling congested, Sam was pretty darn smiley for his pictures, and I think she got some really cute ones! In particular, I believe she may have captured the single best cake-smash picture of all time. We’ll see if it turns out as cute as I think, but let’s just say we were all in stitches (except Sam, who didn’t see the humor in his predicament).
Since we were up in Roseville, we took advantage of the chance to see some friends, too. We met Amber for lunch, and then we went to a park and met Monica and Deborah (Theo’s former back-float teachers), along with Monica’s daughter Scottlynn (Theo’s original lady love). It was a beautiful day, and we had a great time seeing everyone!
Before I sign off, let me tell you that next week’s blog will be posted one day late–on Monday evening. Auntie Lisa and Cason are coming to visit on Saturday and Sunday (going home Monday morning), so I’ll wait until we’ve had all our weekend adventures to post next week’s blog!
Happy February, all!
FEB 3, 2013: HAPPY 1ST BIRTHDAY, SAM!
Well, what a busy week we’ve had! Fair warning that this will probably be a long blog, because we’ve done a lot this week and I want to talk about Sam’s birthday, which is Monday! So settle in for a long–hopefully not too boring–read!
We kicked off the week with a very exciting trip to a lawyer. I know–our lives are nothing if not exciting. HA! But it was something we’ve needed to do, so it was good to finally start things in motion. We’re setting up a special-needs trust for Sam as well as updating our wills. I’ll spare you the boring details, but suffice it to say that we really liked the lawyer (who was recommended by our awesome tax lady, who we love!), and having talked to her about the trust, we’re very glad we’re paying a lawyer to do it for us. It’s so complicated! But she was able to guide us in the right direction in terms of setting up the type of trust that won’t render Sam ineligible for government services when we die. I don’t want to make it sound like we’re trying to mooch off the government, but the fact of the matter is that Sam will always require some form of aid. He may live semi-independently and hold down a steady job, but it will likely be a very low-paying job that wouldn’t provide a full living wage. It’s a sad thing to say, but that’s just the way it is. There just aren’t high-paying jobs for people with things like Down syndrome. (Well, unless the world becomes a very different place in 20 or 30 years–but we’re not naïve enough to believe that the winds of change will make that much of a shift in Sam’s lifetime.)
So, we will encourage Sam to live a full life and provide for himself as much as he can, but the reality is that he will need some form of government assistance. And now we’re setting up a trust that will ensure that he can live a comfortable (albeit not extravagant) life even after we’re gone. Between his government assistance, what he earns, and his trust, he’ll be fine. And that makes me happy. And what makes me even happier is that we discovered we’re in better shape than we thought in terms of being able to provide for both boys after we’re gone. In short, we’re worth much more dead than we are alive. 🙂 But don’t go getting any ideas about bumping us off–it all goes to the boys, so y’all are out of luck! Seriously, though, we were really relieved to find out that the way we’ve structured things like insurance and retirement plans and now our trust/wills, even while making sure Sam is provided for, we can also be sure that Theo won’t be left out in the cold. We were both a little worried that the long-term costs of making sure Sam’s needs were met would leave Theo with the short end of the stick, but that won’t be the case.
Tuesday was no less busy than Monday! Theo had OT in the morning (that lovely 75-minute drive again–argh!), and then after we dropped him at school, Sam and I headed to my naturopath appointment. Boy, am I glad I finally made that appointment! I felt heard for the first time in a long time! The doctor spent an hour with me, taking an exhaustive medical history and going over the results of my recent (well, six months ago) Kaiser lab work. She’s ordered another test for me (a stool test–god love the FedEx man who gets to pick up that package from me, since it’s a do-at-home test!), and then we’ll work out a treatment plan based on the results. Long story short, she suspects an overgrowth of “bad” bacteria in my GI tract, such that the “bad” bacteria now outnumber the “good” bacteria. This, she says, can cause food sensitivities to arise. If she’s right and we successfully get the bacterial balance under control, my food sensitivities should lessen significantly. She said people who develop gluten intolerance usually find they do best if they don’t ever eat much gluten again, but if the bacteria are once again balanced, they often find they can occasionally eat a bit of gluten without getting sick.
And, what finally drove me to the naturopath was the fact that even without eating gluten, I’m starting to get sick again–it’s as if I’m developing intolerances to more things! The doctor said this wasn’t at all uncommon with bacterial overgrowth–your system starts becoming sensitive to more and more things that are just aggravating the inflammation that’s already there.
Interesting bit of info I learned: My Kaiser doctor said that all of my lab work was fine. The naturopath agreed that it’s all technically fine, but she said she saw a red flag in the cholesterol panel. My triglyceride (I think it was that) levels are very low. And she said that’s technically considered good–you don’t want high cholesterol, after all! But she said my numbers on that are far below the baseline of what’s considered “normal,” and that often indicates a problem with nutrient absorption. She said it’s not unusual in people with gluten intolerance. (I think Kaiser says anything under 130 is fine, and the naturopath said that’s true, but anything under 70 indicates a possible absorption problem. Mine was 40.)
So, it’ll take a couple of weeks to get my results back, and then we’ll decide on a treatment plan. If it turns out that she’s wrong and the bacteria is fine in my system, then she’ll do food-allergy testing. But she said this is the first step, as she suspects the sensitivities may lessen significantly once the bacteria is back in balance.
What’s funny about this is that if she’s right, I’m going to roll my eyes: Ispecifically asked my doctor about something called small-intestine bacterial overgrowth many, many months ago. I was Googling around to try to figure out what was going on with me, and I came across that. And my doctor blew me off without even looking into it. So if that really turns out to be the problem, I’m going to laugh. (And yes, I know that self-diagnosis is a silly road to go down. But Kaiser kept blowing me off about the problems I was having, so I felt like I had no choice but to take matters into my own hands and start trying to figure out how to feel better!)
Before I stop talking about my gut, I have to add that for the first time since July 1st, I purposely ingested gluten. Specifically, I ate two bites of a cake sample at Starbucks. TWO bites. I did this knowing that I might pay a price. And boy, did I ever. Within two hours, I found out just why it was a dumb idea to take two bites of gluten. Very, very bad idea. Let’s just say that I could’ve provided FedEx with a good sample to take into the lab. And I felt like I’d been hit by a soccer ball in the gut after. I won’t be doing that again.
In a topic perhaps more exciting than my gut (sorry, sorry! But some readers are family members who have been interested in hearing about this!), Theo had guitar lessons Tuesday night. Chris took him, as I had to get Sam to bed, but he said Theo did great and is starting to learn chords! He said Richard is really good with Theo, and Theo actually does a very good job of paying attention and trying to follow along. So proud of that boy!
And back to the medical world…Sam had his swallow study on Wednesday. He did not aspirate during the study, but he did have instances of penetration. Basically, aspiration is when the liquid (or solid, but in Sam’s case liquid is the enemy–he does fine with purees) goes into the lungs, and penetration is where the liquid gets into the airway, but the person successfully forces it back out before it hits the lungs. So Sam is getting fluid in his airway, as we suspected, but at least during the study, he was able to force it back out each time. That’s not to say he always forces it back out, but at least during the study, he did. So, they’ve recommended feeding therapy for him to help him learn to manage liquids better. They’ve also recommended thickening his liquids to “nectar-thick” consistency. And we’ve been advised to be careful if he starts running unexplained fevers, as that can be a sign of foreign stuff in the lungs.
So, it wasn’t the best news (that, of course, would’ve meant no penetration or aspiration), but it was good news in that he appears to be handling the penetration well. In theory, it should be a matter of just working with him to learn how to handle liquids better. And it’s not bad enough that I have to wean him, so that’s a good thing. (If he was aspirating, I would’ve had to wean him because there’s no way to thicken breast milk unless you pump and bottle-feed it. But the penetration wasn’t so bad that they felt I need to stop breast-feeding–I’m just supposed to stop if he starts to sputter, which I was already doing anyway.)
Thursday was a big day, too–but in a fun way! We had tickets to go see my all-time favorite singer, George Strait, for his farewell tour up in Sacramento. For a while, it seemed dicey–Theo started running a fever on Wednesday, and if Sam had picked it up, we would’ve had to skip the concert. (Well, we wouldn’t have to, but I wouldn’t have been comfortable leaving him if he was really sick. Not that my sister wouldn’t have known what to do with him, but it’s just that in babies with Down syndrome, respiratory ailments can sometimes quickly turn into dangerous breathing situations, so I would’ve been a nervous wreck if I wasn’t there firsthand with him.) But Sam didn’t end up picking it up–thankfully, Theo was very good about staying away from his little brother to try to minimize the risk of him catching it. And Theo was really fine–it was just some random fever that never turned into much. He ran a fever of about 101 for about 24 hours, and that was it. It was unusual because Theo is very, very rarely ever sick and this had no other signs than a fever (no real runny nose, no cough, no tummy troubles, etc.), but it seemed to run its course very quickly, thank goodness. Actually, the only way we knew he was sick was that he was docile and cooperative, which isn’t really like him. 🙂 I told Chris I was suspicious that he was coming down with something for that reason, and sure enough, he fell asleep sitting up in a chair two hours later, and when I took his temp it was 101.2. (Theo never falls asleep in a chair. Dead giveaway…)
Anyway, Grandma Kathy and Papa came up Thursday to babysit ailing Theo, who by then was pretty much back to normal except still running a fever until the afternoon, and Chris, Sam, and I set off for Sacramento. My sister and mom babysat Sam, and Chris and I had a delicious sushi date and then went to the concert. We actually weren’t going to go because tickets were expensive and we didn’t want to deal with trying to line up babysitting, but it turns out to be George Strait’s final tour, so I didn’t want to miss it! And oh, I am glad we went! For those of you who know/like George Strait, you may know that his concerts are typically pretty straightforward (ha ha, strait-forward!) affairs that don’t change much. He’s not a talkative performer–he just gets up onstage and sings. And they’re great concerts because if you like Western swing, you probably love most of his songs, so it’s an evening of good music. He has a good voice for live performance, and he has good stage charisma even if he never says much other than a few “thank yous” in between songs. I’ve seen him in concert 10 times, and for the first 9, that’s how his shows were. I loved them, and they were great–but dynamic and changing, they were not.
But his retirement show was very different! It was still a simple stage and simple playing of good songs, but the set list wasn’t all his hits–instead, it was favorite songs of his from his 30+-year career. I knew most of them just because I know almost all of his songs, but there were many, many songs you would never have heard on the radio. And they were good songs, so it was a treat to hear them! The other difference was that he talked–a LOT! He explained why he chose each song in many cases, and he told stories from his career that haven’t been widely publicized. (He rarely does interviews, but when he has, I have usually read them. And these aren’t stories that I’ve ever heard.) He talked a lot about how much his career has meant to him, etc. In short, it felt like he was performing for a group of friends (okay, 17,000 friends…) instead of for a group of a strangers who just happen to like his music. And it seemed like he had fun. In the 10 times I’ve seen him, it was hands down the best show I’ve seen of his. Just really, really good. So I’m glad we went! And Grandma Kathy and Papa had a good time with Theo, and Sam had a good time with Auntie Lynnie and Grandma Diane! (Well, I’m told he had some separation anxiety, which I fully expected, but he did decently overall. And how could he not, with an adoring aunt and an adoring grandma to dote on him??) When we got back to pick him up, he was sound asleep on my sister’s shoulder, looking adorably angelic. And my sister told me a neat story: Sam hadn’t been overly cheery all night–he was missing me, and it was past his bedtime, so he was tired. But she took him to her Bible-study group to pick up Stevie, and she was excited to introduce him to her friend Elaine, who is in the group and happens to have a daughter, Sarah, with Down syndrome (who is in her early 20s, I believe). Apparently Sam, who had been rather serious all night, gave his one smile of the evening to…you guessed it–Sarah! I figure he was excited to meet one of his peeps. 🙂
The three of us stayed overnight in Elk Grove, as the concert got out late, and we headed back in the morning to find that Theo was over his fever and had gone to preschool, much to his delight. And on the way home, I got a call from Sam’s modeling agency–he has a “go see” on Tuesday with Old Navy! He and five other babies are meeting the people from Old Navy, and they’ll be choosing who to use in their ad. If he gets the job, the shoot is the following week. I’m interested to see what this is like. The “go see” is only five minutes–they just meet the babies and pick which ones they want to use, I guess. I’m not sure whether the other babies have special needs as well, but I have a hunch they don’t. The agency is big on trying to include kids with special needs alongside typical kids (yay–full inclusion!), and so it wouldn’t surprise me if Sam is the only (or one of few) babies with special needs that they’re seeing. I really have no idea what to expect. I’m just hoping that Sam is rested and cheery so they can see happy Sam and decide whether to use him on the merits, rather than seeing grumpy Sam and saying, “Um…we’ll pass on the screaming baby.” 🙂
Saturday morning we went to soccer, which I always love. Theo has so much fun playing, and he’s doing awesome! By that I don’t mean that he’s some sort of David Beckham–being descended from his hopelessly unathletic parents, that’s unlikely. 🙂 But he’s doing great about listening to the coaches, playing with the other kids, participating appropriately, and most importantly, having fun! We kept him in the basic class for an extra session because at the end of last session, he still seemed kind of confused about the game aspect of it. He could do the drills and enjoyed them, but when it came time to put the skills into practice, he just kind of stood there and looked befuddled. This second session seems to have done the trick–he’s now got the basics of the game figured out and happily goes after the ball whenever it comes in his general area. And he has a big smile on his face the whole time and happily answers all of the coach’s questions about the rules of the game and such. He told me, “Mommy, I’m so glad we have soccer today–it’s my favorite!” And we’re delighted that he likes it so much, since team sports can be so beneficial and fun for kids.
After soccer, we headed to Sausalito to the Bay Area Discovery Museum. Sam’s birthday, as you may know, is Monday. And we wanted to do something special for it. When Theo turned 1, his favorite thing to do was be outside exploring, so we took him for a picnic in a big, beautiful park and just let him roam around in the grass. He loved it! With Sam’s birthday rapidly approaching, we were a little at a loss. Because Sam is developmentally delayed, he’s not yet showing the same levels of interest in things as Theo was at 1. So we wanted to do something fun to celebrate his birthday, but what would Sam enjoy? (Yes, we realize our kids won’t remember a thing about what they did on their first birthday, but we think it’s important that we picked something each would enjoy…even if they don’t remember it. Don’t ask me why–it’s just important to us!) I jokingly said to Chris that the only thing Sam is really interested in is nursing, so perhaps I should just walk around with my shirt off all day?! But seriously, we really wanted to find something fun for Sam. And on Saturday morning, I suddenly realized that the Bay Area Discovery Museum was one place that had an infant/toddler area that was actually something Sam could enjoy. Most of those places have infant/toddler areas, but they often are better for kids who can at least crawl, which Sam can’t (but he’s getting very close!). But BADM actually has a couple of areas that have little things to do for babies who can sit up, so voila–we finally had a plan! And it turned out to be great. Theo always loves that place, and Sam had fun in the baby area, where he could sit up and play with a couple of toys on the wall and sit/lay on a “waterbed” type of thing that he really liked.
Theo’s favorite part of the museum was something we hadn’t seen before: Mud-pie kitchen! It’s exactly what it sounds like, and he had ablast! I have never seen him so dirty before–he was in hog heaven! We figured it was a sensory delight for him–and what’s more fun than playing in the mud?! Luckily, we had a change of clothes in the car.
So our day was a success–we felt like the birthday boy had fun, and his brother had fun. And we had fun. Oh–and Chris got the email address of an odd lady who took a shine to him. He he he, I’m having fun with that! She kind of glommed onto us at lunch and was telling us way too many details about her life, so I cheerfully offered to take Theo to the bathroom (which I never do, given that I hate public bathrooms–I usually pull the “he’s a boy, so you should take him” card with Chris!), and then I happily offered to take Sam out to the car to change a poopy diaper and feed him…leaving Chris in the nutty woman’s clutches. See what a nice wife I am?!
As I type this Sunday morning, it’s a lay-low kind of day around here. I’m still feeling pretty wretchedly bad after my two bites of gluten yesterday. (Never, ever doing that again!) Chris is still fighting off the same bug Theo had…and he plans to watch the Super Bowl this afternoon. He’s going to hide up in the den to watch it so he doesn’t get interrupted by the boys, so I think the boys and I will work on Sam’s birthday cake and maybe go out for some sorbet, if my stomach can handle it.
Before I sign off for the week, though, I want to do two more things. One is to climb back up on my soapbox for a moment, and the other is to talk about the birthday boy. So hang in there–you’re almost done reading!
First, the soapbox. I debated for days about whether to write about this, as I suspect my view would be rather unpopular in the Down syndrome community. I’m not sure whether anyone from the community reads my blog anyway, though, so I might as well just say what’s on my mind. Evidently, the Today Show did a segment recently on MaterniT21, a new, noninvasive prenatal test that can detect Trisomy 21 (Down syndrome), Trisomy 13, and Trisomy 18 with pretty good accuracy. (Note: It’s not foolproof. But it’s pretty accurate, apparently.) On the segment, Matt Lauer talked to a pregnant woman who took the test and agreed to learn the results on the air. Matt Lauer says to the couple, “Let’s get right to the good news,” and the mother smiles and says, “We are safe. The baby does not have Down syndrome.”
This segment has caused an uproar in the DS community for a couple of reasons. First, people don’t like the name of the test: MaterniT21, because it singles out Down syndrome (over Trisomies 13 and 18) and makes it seem like that’s what you’re testing for–to make sure your baby doesn’t have Down syndrome (as opposed to testing for all three Trisomies, which is what it does). Second, people don’t like that Matt Lauer called it “good news” that their baby doesn’t have Down syndrome. The comment I’ve seen is, “Oh, it’s good news that their baby won’t be like mine? How insulting!” And third, people are upset that the woman is “celebrating” her healthy baby on the air. Parents of kids with Down syndrome are actually now refusing to watch the Today Showever again because they’re so offended by this.
Let me first say that if they feel that strongly about it and don’t wish to watch the show any longer, it’s certainly a valid choice. I don’t read a blog I used to enjoy anymore because the writer used the “R” word, so I’m definitely not one to point a finger at anyone for drawing a line to stand up for what they believe in! And I have no allegiance to the Today Show–I’ve never even watched it for more than a minute or two at a time. Similarly, I have no allegiance to Matt Lauer–I don’t think I’ve ever even watched him!
But I’m interested in the raw wound this seems to have opened, because it doesn’t offend me. And I wonder if it should offend me, I guess, since it seems to be offending many other people in the community. But it doesn’t. Because to me, it is good news when a baby is healthy with no apparent chromosomal abnormalities. I mean, isn’t that what we all think? When we get pregnant or know someone who gets pregnant, don’t we all hope for a healthy baby? I know I did. And I know that if I got pregnant again (which, unfortunately, I cannot), I would again hope for a healthy, typical baby. And this is not, nor would it ever be, a slight to Sam. I love him with all of my heart–more than I ever could’ve dreamed. And I would never, ever change him because then he wouldn’t be my Sam. But would I ever want to see a baby born with challenges? No, I wouldn’t. So I think it’s a human response to say, “Oh, good news–the baby appears to be healthy and free of chromosomal abnormalities.”
As for the name of the test, it doesn’t bother me. Of course they’re focusing on T21 instead of T18 or T13–T21 is far, far more common than either of the others, and it’s the best-known of the Trisomies. And let’s face it: The name “MaterniT21, T13, T18” doesn’t have the same ring to it. I get why the manufacturers probably did it, and it doesn’t bother me.
If you’ve followed this blog for a long time, you know my views on prenatal testing. If you’re a new follower, here’s my personal view: I did not do prenatal testing because we knew that we would carry any baby to term–that was the right choice for our family. That said, I have no problem with prenatal testing. In fact, I think it’s good that it’s available because there is a benefit to identifying a fetus as having issues ahead of time. In the case of Down syndrome, up to 50% of babies have congenital heart problems. When Sam was born, he had enough characteristics that the doctors knew immediately that he had Down syndrome, and they carefully checked his heart before we left the hospital. But there are cases of babies who aren’t diagnosed until almost a year after birth, because they have few external signs of DS. And those babies would likely be sent home from the hospital with no heart check–imagine if one of those babies had an undetected heart problem. The result could be tragic. So I’m glad that prenatal testing exists so that parents and doctors can know ahead of time to check for things like heart defects, Hirschsprung’s disease (another serious issue in some babies with DS), and so on. I shudder to think of the baby with DS who goes home without having had a thorough checkup to make sure he or she is physically healthy. And to be honest, if we ever had a third child (which again, we can’t), I would probably do prenatal testing this time just so I could be prepared for any possible medical issues if we had another baby with DS or some other genetic issue.
That said, I’m still glad I didn’t have it with Sam. When I was pregnant with him, I knew very little about Down syndrome, and knowing I was carrying a baby with Down syndrome would’ve made me one scared pregnant lady! I would’ve been terrified of what was to come, so it was nice to have a blissfully unaware pregnancy–and we’re just lucky that Sam was/is physically healthy.
But this is where I think the Today Show failed. It was not in saying “good news” (although it is a shame if people felt hurt or offended by the word choice–it doesn’t bother me, but I hate to see others feel hurt), but it was in not taking the chance to educate the public about Down syndrome and Trisomies 13 and 18. This is where the Today Showfailed our community, in my opinion. They could’ve taken the opportunity to do a segment on the realities of having a diagnosis of one of these chromosomal abnormalities. They could’ve featured some kids with Trisomy 21, for example. They could’ve talked about the resources available if you do have a diagnosis. They could’ve highlighted the wonderful communities that exist for support when you have a child with Trisomy 21 (and presumably Trisomy 13 or 18, although my knowledge of those communities is scant).
So that’s my beef. I think the Today Show probably could’ve chosen their words a bit more carefully, but I’m not offended by them. I am, however, disappointed that they didn’t take the opportunity to show the other side of a diagnosis–not the scary “here’s all the problems you’ll face” side, but the “and here’s the blessings you’ll have” side. It is one of my long-term goals to someday help set up some sort of group that encourages the medical community to have patients with a prenatal diagnosis connect with families living with Down syndrome before the patient makes a decision on whether to terminate the pregnancy. Because that, to me, is the danger of tests like MaterniT21–it’s not bad that the test exists, but it’s a shame that people may use the results to end pregnancies without ever having seen the positive side of things. I firmly believe that if parents with a prenatal diagnosis of Down syndrome had a chance to meet some kids with DS and parents of kids with DS before making a decision about termination, the abortion rate would be much, much lower than the 90% (or thereabouts–statistics can always be manipulated, so the actual number is hard to know) it currently is in the DS community. Someday, when I have less on my plate, that’s my goal–to help set up that kind of system.
But anyway, I’ll now step off my soapbox and talk about the most important thing of the week: Sam! The birthday boy! One year old! I cannot believe how fast this year has gone by! And how much we have all changed.
You all know about all of the awesome things Sam has done–learned to sit up, working on crawling, all that good stuff. But now is a good chance for me to talk about the effect this little baby boy has had on our lives. Because we are all so much the better for having him in our lives!
Theo adores his brother, as I’m sure you can see in some of the pictures from this week. And Sam adores him right back–he lights up whenever Theo comes around him! If he’s fussing and I need to leave him to his devices (if I’m cooking something on the stove, for example), I can say, “Theo, would you go keep your brother company?” and Theo will happily drop whatever he’s doing and go talk to Sam, who immediately stops fussing and becomes all smiles. And the boys play together on the floor now–Theo very patiently shows Sam how to play with his toys, and it’s so sweet to watch!
And Theo, over the past year, has become a much more open, affectionate little boy, and I can’t help but think we have Sam to thank for that. He has been openly affectionate to Sam from day one, and that has now carried over to Chris and me, too. He frequently tells us he loves us, gives us hugs, etc. It’s wonderful! He has truly blossomed since gaining a brother. And somehow, I think those two will forever be each other’s best friends.
As for Chris and me…well, we have become better parents because we have thrown all expectations out the window. It’s hard to put into words, but when you’re met with a surprise as we were, your neatly ordered lives are suddenly thrown into chaos. We didn’t have a lot of expectations, really–it wasn’t like we thought, “And we will have a boy and a girl, and they will both follow in Chris’s footsteps and go to UC Davis, and they will marry and produce grandchildren and be successful individuals.” But we did have certain expectations of having a couple of kids and having those kids progress through the typical path of childhood, school years, college, leaving the nest, perhaps starting their own families, etc. And then it would be our turn to go back to traveling, living in our empty nest, etc. And then along came Sam, and life turned on its ear. Now there are therapies and paperwork and IEPs and the knowledge that although Sam might very well live semi-independently as an adult (either alone or with a partner or spouse), he’ll always need us for support. But instead of it being oppressive to think about having a child who will always need us, it has made us throw everything in the air and say, “Oh, what the heck? What’s the point in all of these well-made plans when life can throw you a curve ball and change them all?” And it has been very liberating! We just take each day as it comes, and although we do some long-term planning (like that special-needs trust), we now live each day in the moment, with no expectations that we haveany idea what our future will hold. It may sound scary on paper, but it’s actually rather liberating.
For us, this is where having a child with Down syndrome is most different from having a typical child. It’s not so much in the fact that he achieves milestones at a different rate and will have some different needs than Theo’s; it’s more that every day with Sam is the unknown, so we just go with the flow. This is really true with any child, because they’re all unique, but I know that we didn’t realize it until we had Sam. With Theo, we were the typical parents who thought, “Okay, he’s a year old, so he’ll probably be walking soon. Okay, now he’s 15 months, so he should start talking more soon.” And we didn’t hold particularly tight to these “deadlines” (Theo was a late talker, which seemed to worry other people far more than it ever worried us, for example), but still…because he generally hit most milestones, we had sort of a path to follow.
In kids with DS, the path is much more vague. Some walk at 15 or 18 months…some not until well past age 3. Some potty train at 2.5 years or so…others not until 5 or 6 years. Some can say a few words before they’re 18 months…others don’t ever speak. The milestones are just so vastly different from child to child that you can’t live life following a development path–you have to just let go and see where it takes you. And that is, we’ve found, a beautiful thing. He’s a year old now, and we think he’s going to crawl soon because he’s constantly getting up on his knees and rocking back and forth…but in reality, it could be another month before it happens, or two or three or six. And so when it happens, we will be so excited–but we’re not stressing about it not happening.
All of this “throwing the plan out the window” has left us free to simply enjoy our kids, and that is a beautiful thing. So we can thank Sam for showing us what really matters in life–that there’s no point in sweating the small stuff, and we should just let go and enjoy the ride. And oh, how we are enjoying it! It has been a grand, wonderful first year with Mr. Sam, who makes all of our lives so much the better for being a part of them!
To finally wrap up, if you’ve made it this far you are rewarded with a video that I put together for Sam’s first year. Go to the Still More Videospage and click on the video to view it. I think it turned out pretty darn cute, if I do say so myself.
Have a wonderful week, all!
JAN 27, 2013: MAMA’S BOY
Well, it looks like my little mama’s boy has a full-blown case of separation anxiety. He’s about the right age for it, but this is new territory for us, as Theo never really went through any sort of separation anxiety or “strange” phase. In retrospect, I wonder whether that should’ve been a red flag for autism, really–the fact that he was pretty content just doing his own thing, being around whoever. He didn’t like being in big crowds, but one-on-one he did fine with pretty much everyone. He was attached to Chris and me, but just as attached to grandparents, aunts and uncles, etc. He really didn’t show much outward affection to anyone. That has changed now–he’s very openly affectionate with me and Chris, which is wonderful! But it was a long time coming, and I wonder now whether that should’ve tipped me off about autism. Ah well…who knows?
But Mr. Sam–he’s a lot like his brother in some ways, but very much his own little guy in others. One way he differs from baby Theo is that he has always been a mama’s boy. As long as he’s rested and comfortable, he’ll go to Chris as easily as to me…but he’s hit or miss with others. He loves them as long as one of us is holding him, but if other people hold him, he’s happy for a bit and then wants Mom or Dad back. And if he’s overtired, then only Mama will do–not even Daddy can step in.
The last couple of weeks, this has gotten more pronounced. This week, he didn’t even do OT or PT because he threw such a complete fit about anyone else touching him. Not for lack of trying–both Christina and Michelle tried everything but standing on their heads to work with him, but he was having none of it. We all wondered whether it was so pronounced perhaps because of an ear infection or something, so I finally took him into the doctor for a quick ear check on Thursday. No infection, but she said he does have a cold, so maybe that’s adding to it.
Anyway, he gets to miss OT and PT this coming week due to conflicting appointments with other things, but we’ll see how he does in two weeks, when Michelle and Christina come back.
And if my poor sister is reading this, she is cringing right now because she’s signed up to babysit him on Thursday for many hours–at bedtime. I feel kind of terrible for both of them, because I have a bad feeling that he’s going to spend a lot of time crying! But Chris and I paid a fair bit of money for concert tickets, and it’s my favorite performer’s farewell tour, so the last time I’ll get to see him in concert. So I don’t want to just throw away the money we spent on tickets and miss it! So, send your good wishes to Auntie Lynnie that Sam cuts her some slack and doesn’t wail at her for the better part of six hours….
By the way, speaking of Sam’s doctor, I love her! So glad we switched from the last pediatrician. She is just really kind and friendly, and she never makes me feel like an overprotective idiot. I do tend to be a bit overprotective with Sam medically, just because of some of the weirdness that can occur with the immune system and Down syndrome, but she never makes me feel like a nut. So I like her. 🙂 Also, I had been planning to split up Sam’s one-year vaccines because he’s due for six, and I’m just not thrilled about giving him six at once. That’s a LOT of vaccines for a little body to handle, and he has a tough time with vaccines every time. (Fever and lots and lots of fussiness for up to a week after each set. Yuck!) But some doctors get cranky about you asking them to split up vaccines. Which is fine–it’s ultimately my choice regardless of how cranky they get–but it’s just annoying. But Dr. Borquez brought it up to me without me even asking–I told her I’d see her in about two weeks for Sam’s one-year checkup, and she said, “Oh! He’ll be due for six shots. We can split them up if you’d like. The new ones are MMR, varicella, and Hepatitis A, if you want to research them.” It’s a little thing, but I just liked that she was proactive enough to mention those things to me.
And speaking of doctors, I wish I liked my doctor as much as I like Sam’s! She’s okay (she’s the one who suggested that I might be gluten-intolerant, so I can thank her for that, since removing gluten from my diet has made a huge difference in my gut health), but I’m having some recurrent digestive issues, and she pretty much dismissed me with no help. So, I’m going to a naturopath on Tuesday, in the hopes that she can help me narrow down what is causing my digestive problems. If I just knew what (besides gluten) was causing the inflammation, I could adjust my diet accordingly and be much healthier and more comfortable! Besides, my mom’s side of the family has a lousy track record with colon cancer and other digestive problems, and I can’t stop thinking that if I just ignore these gut problems, my GI tract will be perpetually inflamed, and that can’t be a good thing for staying healthy against things like cancer. I need a healthy gut to stay healthy! And besides, I’m sick of getting sick all the time. It’s much better since cutting out gluten, but I’m still having some problems.
In case you’re curious, as I understand it, a naturopath combines Eastern and Western medical practices. So they can prescribe medications, and they can order the same medical tests as a typical Western doctor, but they also integrate Eastern and alternative healing philosophies (things like acupuncture, chiropractic care, etc.). I’m open to anything that helps. And what I really want are the allergy/sensitivity tests for foods, which my doctor won’t order. Supposedly the naturopath will, if she feels it’s important. We have to pay out of pocket (ouch!), but if I can get to the bottom of this by doing so, it’ll be worth every penny.
Trying to determine a food sensitivity is like looking for a needle in a haystack, so I’m really hoping she can say, “Your system is sensitive to X, Y, and Z. Don’t eat those.” And then I can stop eating them, heal my gut, and go on happily ever after! Cross your fingers that it’s really that easy….
Anyway, moving on from digestive health! Sam and I took an impromptu jaunt to Elk Grove this week to see Grandma Diane. She took a spill while walking her dog and hit her head pretty well, and I wanted to make sure she was okay and take her some things to make her convalescence more comfortable. (She’s not really convalescing–just supposed to take it easy for a bit. But because she just moved and has everything in boxes, I figured she’d be more apt to relax if she actually had some TV to keep her occupied, some magazines to read, etc.) Sam and I drove up while Theo was in preschool, and we had a nice visit. It’s rare that I see her without Theo in tow, so it was a nice change. Theo loves her so much that he tends to talk her ear off, and then I don’t get much chance to talk to her. But he’ll get his chance to do that tomorrow, as he’s going to spend a couple of hours with her while Chris, Sam, and I are at the lawyer’s office (setting up Sam’s special-needs trust and updating our wills).
Let’s see…what else did we do this week? Theo missed his guitar lesson because his teacher accidentally double-booked, but I made it up to him with a Jamba Juice, so all was well. And our next lesson is free due to the teacher’s goof, so no complaints!
He did have karate class, which was fun. He was a real handful afterward though, same as last week. This can sometimes indicate that he’s stressed out by something, so we’re going to watch how he reacts after the next couple of lessons (we paid for five), and if he continues to be a turkey after his lessons, we probably won’t continue. He seems to enjoy it, but motor planning is an area where he struggles, and karate requires a fair bit of motor planning. So it may be something that’s better tried when he’s older and after his OT has worked with him more. We’ll see how he does after the next couple of lessons.
He also started soccer again this week, which he loves. That class is very low-key, so he’s able to understand the instructions better and participate with the other kids well. I think it’s less stressful for him, and he really enjoys it.
After soccer, we took BART into San Francisco and went to his favorite children’s museum. This is a real treat for him, but one we probably won’t do again soon. As much as he loves riding BART, it seems to send him into a tizzy. It is a lot of sensory input (noisy train, lots of people, flashing light and dark as you go through tunnels and back into the sunshine, lots of jostling motion, etc.), so it may just be a bit much for him. Next time we’ll probably just drive into SF, even though that means fighting parking and traffic.
Sam was pretty funny on BART. He was snuggled into my Ergo, so he was happy as a clam. And from his special little nest on my chest, he beamed at and flirted with various people on the ride. He utterly charmed a woman and an elderly man on the ride home, giggling and cooing and grinning at them. As usual, the mama’s boy is happy as long as he’s snuggled up to Mama!
And on Sunday we mostly stayed home and cleaned. We did venture out for lunch (Chipotle) and took a walk to the park, and Chris took Theo to get a haircut, but other than that we cleaned, cleaned, cleaned. Grandma Kathy and Papa are staying at our house on Thursday night to watch Theo, so we’re trying to make it presentable. 🙂
In case you’re wondering about the exciting developments in Theo’s schooling, we have a new contender, suggested by Theo’s preschool teacher. I’m waiting to get a packet in the mail from them, and then we can set up a visit if we’re interested. From what I see on their website and on the local parenting forums, I’m interested. This is a small private school in Lafayette that has been there for 30 years. It started as a combination of Waldorf and Montessori philosophies and gradually evolved to include a more standard approach as well. So now, it provides a typical curriculum with teaching practices influenced by Waldorf and Montessori methods. My hope is that it takes the best of all three worlds and combines them into one lovely place. Theo’s teacher apparently toured the preschool (it goes from preschool through fifth grade) a couple of years ago and loved it, so she suggested I look into the kindergarten program. In doing some research, it seems parents of kids in the school pretty universally love the place–and the tuition is half of the typical private-school tuition for the area. But what really drew me to it was a statement on their web page about believing in full inclusion. They specifically mentioned that their program is fully inclusive and that students with autism, Down syndrome, and a number of other learning challenges have successfully gone through their school. Hmm, they’re speaking my language!
Lafayette is a bit of a drive for us, but not nearly as far as the Waldorf school in Danville. And because their curriculum is based on more a standard model, if we had to switch Theo out for some reason, he could probably pretty easily go into any other program.
Anyway, my packet hasn’t arrived yet, but I’m curious to find out more. I do know that the school is very big on teaching kindness and respect for others, which is huge for me. I have zero tolerance for bullies, and I want my boys in an environment where kindness and respect are some of the most important values. I can work as hard as I can to instill those values in them, but if they go to a school where it’s a dog-eat-dog world, they’re going to lose some of that. And that would be very disappointing to me.
The other factor is that I just learned this week that if we enroll Theo in public school, he may not get to go to the local one right near our house. Because he’ll require some help to transition successfully into kindergarten, he’ll be put in whatever kindergarten program can accommodate those services. And that doesn’t thrill me for two reasons. Number one, I might have to drive him to some farther location. If he’s in public school, one of the big benefits to me is that it’s close–I don’t have to drive all over town every day! But that may not be the case. But more importantly, Mount Diablo Unified School District has a wide range of schools in terms of performance. Our local school is ranked pretty high for the area–not the top, but pretty high. But the district has a lot of lower-performing schools too (Concord has some lower-income areas that seem to have lower-performing schools), and I don’t want him to end up in a substandard program just because that’s where they have room for him with an inclusion aide. So the search goes on…
I’ll wrap this up by sharing a few links with you. If you haven’t already heard of Theo’s latest obsession, click here. If you want to know about his plans for his birthday cake, click here. And for a really neat story,click here. A caution about the last one–the story is wonderful in one way but sad in another. The part about the waiter standing up for the child with Down syndrome is heart-warming and great! The fact that he even had to do it is downright sad. Ah well. We’ve still got a long way to go to fully change the world, right? Stories like this show we’re off to a good start.
Oh! And our small-world moment of the week, which is truly crazy! Chris and I sometimes sell things on Amazon.com–used CDs and such. This week, we sold a Downton Abbey CD that we had already copied to our computers and no longer needed. A woman named Eleanor bought it–and oddly enough, she lives literally across the street from my aunt and uncle, in a small community in western Virginia! Of all the people in the U.S. who could’ve bought our CD, it just happens to be my aunt and uncle’s neighbor! I’m not sure whether I’ve met her when I’ve visited them, but they certainly know her well. Crazy, eh?? What are the odds of that?!
So that’s the news from here! Hope you’ve all had a lovely week!
JAN 20, 2013: THIS AND THAT
Greetings from warm, sunny CA! That’s right–our cold spell finallyended, and now we’re having lovely weather. It’s only about 58 degrees at the warmest parts of the day, but it feels absolutely balmy! It’s so nice, in fact, that on Friday I set out to do something I’ve been meaning to do since we moved here: walk to Starbucks. If you walk on the roads, Starbucks is about two miles from our house. And while I used to be able to walk four miles roundtrip without breaking a sweat, I’m no longer in such great shape. But, our community backs up a golf course and some undeveloped land, so there’s a lovely little path that cuts about half a mile off the trip. And, it’s shaded and beautiful–it meanders along a creek, through wooded areas and parks. It’s a well-traveled path–lots of joggers, people walking with baby strollers, and people walking dogs–but it’s still peaceful and lovely. So I decided Friday was the day–Sam and I were going to give it a go while Theo was at preschool!
Well, this worked well in theory. In practice it was a bit more difficult. You see, I have a bit of a cold, and Sam’s sleep has been as horrid as ever, so I’m rather tired and run down. And Sam isn’t too keen on the stroller. He’ll ride in it, but only for about 15 or 20 minutes. (My theory is that he tires out in it. Even though it reclines, the way he’s belted in, he’s not able to fully relax. It’s hard to explain, but he’s almost sort of “hung” by the straps in either of our two strollers. But he has to be strapped in, so… Anyway, I think as he gets stronger and more able to fully support himself sitting, it will get more comfortable for him. But at the moment, he still has to work rather hard to sit in the stroller, and I think it tires him out.) So anyway, Sam lasted 15 minutes in the stroller, and then I had to load him into the Ergo and carry him. I stowed the stroller behind a tree and hoped it would be there on our return.
So on we trudged–me with a 17-pound baby strapped to me. By the time we got to Starbucks (it’s about a 40-minute walk), I was pretty tired. So I ordered my drink and started the walk back, figuring I’d put Sam back in the stroller when we reached it. An excellent plan–except that he fell asleep! And lord knows I don’t wake a sleeping baby, so I soldiered on, with 17 pounds of dead weight on my chest, and pushing an empty stroller with one hand. It was mostly downhill walking toStarbucks, so of course the reverse was true going back. And I was feeling that lack of sleep and fatigue from my cold. 🙂
But, of course, we finally made it home. I didn’t want the dogs to bark and wake Sam as I went in the house, so I gingerly sat down on an extra desk chair we have in the garage, and there we sat for the next hour. And actually, it was quite peaceful–the weather was lovely, and I had a warm, snuggly baby snoozing on my lap as I puttered around on my iPhone and enjoyed the day.
Speaking of the warm, snuggly baby, he and I also enjoyed a nice morning at Baby Steps class on Wednesday. There were only two other people there, but both were close to Sam’s age. One was Declan, a little boy who was turning 1 the very next day! We’ve met him at several Down Syndrome Connection events. The other was a new member named Matthew, who’s 15 months old. So cute!! His family lives in Napa, so he hadn’t made it to anything at the DSC before Wednesday. Was good to meet another fellow close to Sam’s age. Matthew makes Sam look huge–he is tiny, tiny, tiny! (In contrast, Sam makes Declan look huge!) Matthew has recently learned to army-crawl, so I was hoping he would inspire Sam, who desperately wants to achieve forward motion and keeps getting angry that he can’t. 🙂
I always enjoy Baby Steps, but it was particularly useful this month, as Heather, the speech and feeding therapist for DSC, sat in and gave us all individual help on feeding issues. That was useful although a bit hard because Sam is definitely behind on feeding issues compared to the other two babies. All three babies have feeding challenges, but Sam is definitely struggling compared to the other two, who are already self-feeding small bits of food. I thought Sam wasn’t self-feeding just because of having Down syndrome (oral-motor control comes later, etc.). But both Matthew and Declan were competently feeding themselves small bits of food, so I realized that technically Sam couldbe doing that…if he wasn’t having some sort of issue. It’s likely a sensory issue, according to Heather and his OT. These are very common in babies with DS–they can’t feel the food/liquid in their mouth very well, so they end up having difficulty eating. So it’s just a matter of continued practice and patience, which we will do. And someday…someday…he will learn to eat more effectively. I’ve heard more than a few stories of kids with DS still rejecting any form of solid other than purees at age three–hoping that doesn’t turn out to be Sam! I actually had a bit of a sad moment when I realized that there’s no point in making him a cake for his first birthday, as he won’t do the typical “dive into the cake and feed himself wonderful, gooey handfuls” thing that most babies do on their first birthday. He refuses to put any sort of solid in his mouth, and if you put it in for him, he has difficulty with it. Ah well. Maybe I’ll make a cake anyway, for Theo’s benefit more than Sam’s. I don’t want him to think his little brother’s birthday isn’t a special day!!
Anyway, Heather watched Sam drink from a straw and was concerned about aspiration, too, so now I’m even more eager to get that swallow study done to get a definite answer. Sam did his usual sputter-choke-gasp-cough for her, and she wrinkled up her brow and said, “Yeah, that’s a worry.” :-/
I do wonder, though, if he is aspirating, if perhaps getting to the bottom of that will improve his sleep. The feeding therapist at Kaiser said if he’s aspirating, he could be aspirating his reflux, which would be quite uncomfortable. Is that why he can’t sleep well? Lord knows… I keep holding out hope that we’ll find an answer, but it’s more likely we’ll just continue to wait for him to outgrow it.
We also had Theo’s first karate class this week! What fun! We weren’t sure whether he has the self-discipline yet, but we figured it was worth a try. And he actually did pretty well, all things considered. There were aton of kids in a fairly small room, so it was a bit claustrophobic. (One of the other dads told Chris it’s usually nowhere near that crowded, thank goodness.) But Theo seemed to take it in stride and enjoy himself–until one little girl threw a big tantrum, which kind of freaked him out. But that was near the end of the class, and he did well until then. He didn’t really understand what he was supposed to do, but he had fun. Because karate is sort of a rolling enrollment, a lot of the kids (the majority, really) have already been in it for some time, so they already know how to do the moves. Theo has never done it before, so it was all new to him. And understanding how to move his body is something he really struggles with (it’s something he works on in OT–knowing how to follow motor directions and such), so we knew it would be a little challenging for him. But he gave it a good try and seemed to enjoy trying, so we were really happy to see that! Chris has been helping him practice the moves at home so that when we go back next week, he’ll be a little more sure of himself in the class.
Speaking of OT, we started with our new therapist for Theo this week. Long, long story short, we aren’t able to afford to continue to pay for Nan out of pocket weekly. So, we’re now using a Kaiser-covered OT every week and paying out of pocket for Nan once or twice a month, as we can afford it. But Kaiser’s only OT they could refer us to was in San Ramon, which is quite a drive. (They have one in Concord, but that provider had no availability. They had one appt left per week, and it happened to be at the same time as Sam’s OT. I asked to be put on a waiting list for another spot, and they were rather rude to me and told me it wasn’t likely to happen. Sigh… So I told them to go jump in a lake and instead decided to drive to San Ramon.) Anyway, Theo’s appointment is at 9am on Tuesdays–right during rush hour. It took usninety minutes to get down there! It’s only 17 miles from our house! Madness!! I was ready to say, “Forget it!” But then I met Theo’s new OT, and I liked her, so I shall suck it up and sit in 90 minutes of traffic every Tuesday morning. Sigh… Kirsten (the OT) is working on the same things Nan is, so I think they’ll complement each other well. And she got a real kick out of Theo. She started out by saying, “Hi Theo! Do you like to be called Theo or Theodore?” He replied, completely deadpan, “I like to be called Spider-Man.” Then he launched into a rousing rendition of the Beach Boys hit, “Surfin’ Safari.” It was pretty amusing. 🙂 When he finished his session, Kirsten came out of the room laughing and said, “He is so funny! He had me laughing the whole time! I’m going to like working with him!” Well, of course the way to my heart is to like my kids, so we’ll keep going to Kirsten, despite the hideous drive.
Chris and I had a lovely date this week! Roxann and Mike watched both boys so we could go to dinner. We went to California Pizza Kitchen, as Chris’s parents had gotten us a gift certificate for Christmas. I had a margarita and a salad, and Chris had a raspberry lemonade, a salad, and a bowl of soup. (He was the designated driver, thus the lemonade! I’m sure he would’ve loved a mojito, but…) I have to admit that I am a total lightweight now! The margarita knocked me flat. I should probably stick to wine. 🙂 Afterward, we walked around the mall a bit, looking for long-sleeved shirts for Sam. I have so many nine-month pieces of clothing for him, but oddly few long-sleeved shirts. When the warmer weather comes, though, he is set!
Turns out Sam had some separation anxiety. Apparently he cried for over an hour after we left…and then finally crashed on Roxann’s shoulder. I felt so bad–both for Sam crying so much and for Roxann and Mike having to deal with a wailing baby! Ah well… I had a feeling this day was coming. Theo never had separation anxiety, but Sam is muchmore of a mama’s boy than Theo was. My sister and mom may have an interesting time watching Sam when Chris and I go to the George Strait concert in a couple of weeks. Eeek…
On Saturday morning, we headed to the park to let Theo run off some energy before going to Berkeley to meet our friends Jason and Maria (and their kids) for lunch. And what do you know–we ran into a new friend from Theo’s preschool! Theo yelled, “Mom! Dad! Joseph is here!” when he got to the playground. We didn’t think much of it–Theo oftenthinks he sees people he knows when he really doesn’t. But he was actually right–Joseph’s mom said, “He thinks he knows my son, and my son seems to know him….” Turns out they go to preschool together–Joseph just started last week! So it was nice to get to meet another mom from preschool–because Theo rides the bus, I don’t really get to meet any of the other parents. She seemed quite nice, and in fact has a second son who’s just two weeks younger than Sam! Hmmm, potential play dates?? That would be nice! Theo seemed really excited to have seen his friend at the park.
We went to Vik’s Chaat Corner for lunch–same place we went last weekend. And it was quite tasty! They had more gluten-free options for me this week, so I got to have some yummy pakoras and some other lentil thing that was quite tasty. And then we went to a park way up in the Berkeley hills that supposedly has a fantastic view. And indeed it did–but the sun was in the wrong place for me to get very good pictures. Ah well, next time….
Our Sunday plans fell through, so we decided on the spur of the moment to drive up to Elk Grove to see Grandma Diane’s new house! It’s a really bright, pretty little house–I think she’ll be very happy there. And Chris was able to do a few handyman things for her (changing out her door locks, programming her garage-door openers, and installing new shower heads), which was fun for him–he loves fix-it projects, and since we don’t own this house, he doesn’t get to do many anymore. So he was happy to be able to putter and fix things for her, and the boys and I enjoyed seeing her new house and visiting her.
Speaking of Chris, the big news this week is that he was invited to a company meeting…in Spain! Or maybe Portugal–it’s still up in the air. It’ll be a weeklong series of meetings, and I am insanely jealous that he gets to go to Spain or Portugal, two places I’ve not yet been. Clearly, I need to go work for Genentech, too. 😉 I have to say that I’m not particularly looking forward to being a single mom for a week, but I certainly can’t begrudge Chris a trip to Spain, for heaven’s sake! Chance of a lifetime, even if it is a work trip! Besides, professionally it’s a good idea for him to go. He doesn’t have to go, but it’s “encouraged.” To be honest, the single-mom part wouldn’t bother me except for the fact that I’m so darn sleep-deprived. It’s not as if I can put the boys to bed at night and count on a good stretch of rest for me. No…more like “every two hours (if I’m lucky), Sam will summon me.” Yawn…
By the way, in case you’re curious about the essential oils that I mentioned trying for Sam’s sleep…they don’t seem to be doing much. They certainly haven’t done any harm, but I haven’t seen any real improvement, either. That said, ordering them was not a loss. Along with the oils for sleep and relaxation, I ordered a digestive-health blend. I massage a couple drops on his belly a couple of times a day. Supposedly, it helps fight constipation. Guess what? Since I started using it, he has pooped at least once every day–usually twice! And with very little fussing. Before that, he would go only once or twice a week, and sometimes he would fuss and cry on and off for 24 hours while trying to work it out. So this is a major improvement, and for that reason, it was worth every penny to order the essential oils…even though I’m sad to say that the ones to promote sleep did nothing. Yawn again…
Occasionally, I give in, by the way. I’m not a co-sleeping person. Most of my friends co-sleep with their babies, and they love it. I never co-slept with Theo, and I never intended to co-sleep with Sam. Why? Because I’m a lousy sleeper anyway, and I knew I’d sleep even more fitfully if I tried to co-sleep. Besides, I figured the transition from my bed back to a crib would just be all the harder if I allowed co-sleeping. So I didn’t. Until now. Sam’s sleep has gotten so bad that I’m lucky to get consistent two-hour blocks of sleep from him at night. Sometimes they’re only 90 minutes. Or 60 minutes. Or, on the worst nights, 15 minutes. And I’m a walking zombie. So on those very worst nights, I throw out my “co-sleeping isn’t my thing” mentality and haul the little turkey into bed with me. And I don’t sleep great, but at least it’s a little better. He still wakes up a lot, but he tends to sleep for maybe three hours instead of one or two. Occasionally even four. And I have to admit, it is very endearing to lie there in bed and look at his tiny angelic face next to mine, with his pajama-clad bottom sticking up in the air. Very endearing indeed. I still don’t want to make a habit of it, as I don’t sleep all that well when he’s in there. Maybe I’m just distracted by how cute he is. 😉 But anyway, on those nights when I say, “That’s it! I need to sleep no matter how it happens!”…well, I give in. 🙂
Anyway, hope you all have a good week…and that you’re sleeping more than I am. I already know the answer to that last part, though. 😉
JAN 13, 2013: SCHOOLS AND STUFF
Brrrr, happy frigid week, everyone! Although my aunt in Virginia tells me they’re having unseasonably warm temps. But I can assure you that’snot the case here. I think we topped out at 48 degrees here today. Chilly!!
Busy week for us here! Theo started back to preschool, much to his delight. More on that later–I’ll warn you right now that I’m going to talk about schools and such later in the blog. For two reasons, really–first, I’m still trying to work out schooling options in my head, and writing about it helps me make sense of things. But two, we have a number of people who are interested in Theo’s schooling, and talking about it on the blog is a good way to get the info across without repeating the same thing to multiple people! But I’ll save that until the end of the blog, so that those of you not interested in reading more of my thoughts on Theo’s education can just skip over it and end your reading early.:-)
But speaking of Theo, he started guitar lessons this week! It’s a trial, so we’ll see how it goes. Technically, he’s about two years too young for guitar lessons, but his teacher offered to try him and see how it goes. And the first lesson went great! Theo was unbelievably polite and cooperative–I found myself wondering if he was really four years old! He was just much more attentive than a typical boy of his age–and much more attentive than Theo himself normally is. Clearly the guitar teacher/lesson held his interest! Which is surprising, actually, because Richard (his teacher) spent most of the lesson restringing and tuning Theo’s guitar. And Theo was just sitting there, waiting patiently, for a good 20+ minutes. Richard talked to him about guitar stuff during that time, but still–it was a lot of just waiting patiently, and I was pleasantly surprised by how well Theo did. He was itching to get his hands on the guitar, but he waited very patiently. The funniest part of the lesson, though, was when he very politely asked Richard after about 20 minutes of waiting for him to restring the guitar, “Richard, is this a little hard for you? Is that why it’s taking so long?” The rather serious British guitar teacher stifled a laugh and said, “Well, yes, I guess it is a little hard for me….”
Anyway, he taught Theo how to finger the frets and pick a few strings, so we’re working on that this week. Theo’s not overly keen on practicing specifics yet, and the goal is to keep it fun, so we just practice for a few minutes a day. So far, so good.
We also had my birthday this week! It was on a Tuesday, so we didn’t really do anything as a family. But Chris drove into work early and got home early, so that was nice! And I went to lunch with my friend Roxann. Gluten-free crepes! They were really tasty–couldn’t even tell they were gluten-free, which is a good thing. 🙂 And I went and used my birthday money from my Mom to buy a baby carrier I’ve been eyeing. (A Beco Butterfly, for my baby-wearing friends. It’s relatively easy to get the baby on your back in that one. I’m unable to do that with my beloved Ergo–because I’m uncoordinated, not because the Ergo doesn’t support it–so I wanted the Beco for times when I want to put Sam on my back.) And Chris made me his famous, wonderful spaghetti for my birthday dinner! I made a yummy flourless chocolate cake for dessert, too. So it was a very nice birthday, even for being on a Tuesday!
On Wednesday Sam had a feeding consultation in Oakland. I think I mentioned on this blog that we’re concerned that he may be aspirating. I was able to get some video of the gasping/choking thing he does when he drinks (and sometimes when he eats), and his OT and his pediatrician both felt that it warranted further investigation. So the first step was a feeding consultation. I showed the feeding specialist the video, and Sam also did his gasping/choking/coughing while I fed him during the appointment, so she was able to see what concerns us. And it concerned her, too–not in a “we need to look into this right away!” manner, but in a “yes, we should investigate further” manner. So, she ordered a swallow study for him in three weeks. Her suspicion is that it may be “microaspiration,” which is aspiration of liquids but not solids. (Aspiration, if you’re not familiar with the term, is taking liquid or solids into the windpipe and down into the lungs, instead of them staying in the esophageal tract.) So aspiration is never a good thing, but aspirating only liquids and not solids isn’t so bad. The solution is to just thicken the liquids to a certain consistency that he won’t aspirate, if it turns out he is indeed aspirating. (The barium swallow study should show for sure. It’s painless and noninvasive–they just lace his cup of liquid and his solid food with barium and take X-rays while he eats and drinks. That shows them exactly where the liquids and solids are going when he swallows.)
The downside to this is that if he is aspirating, I might have to wean him. (Because you can’t thicken breastmilk as it comes out of the breast–the best you could do is pump it, add the thickener, and bottle-feed it to him.) Some experts say that it’s fine for a baby to aspirate breastmilk–because it’s a purely natural substance, the lungs don’t recognize it as foreign, so it causes no problems. And, they say, the benefits of breastfeeding outweigh the fact that the baby is aspirating some of the milk. Other experts say it’s not okay to aspirate breastmilk, as the baby shouldn’t be taking anything into his lungs. So we’ll see. First we need to see if he’s really aspirating. Second we need to have a GI consult and see what they recommend if he is. At the moment, he won’t take a bottle. Of course he would if he got hungry enough…but yikes. And it’s questionable whether he should be reintroduced to a bottle at this age. I mean, this is the age where most doctors tell you to start working to getoff a bottle. But he doesn’t drink enough through a straw for that to be his only source of liquids. And sippy cups aren’t recommended for kids with DS due to oral-motor issues. So we’ll see what they say, if he’s aspirating. And if he’s not…well, then it’s a moot point!
Interestingly, a few things I didn’t realize were possible signs of aspiration and had attributed to other causes may in fact be due to aspiration! One is the fact that he snorts a lot. I thought he was just a snorty baby–he’s been doing it since the day he was born. I’ve always said he’s like our pugs that way! But it turns out the snorting could be him trying to clear his airway. The other is this weird “bearing down” sound he makes. It’s hard to explain, but it looks and sounds like he’s pooping–only he’s not. He forces a bunch of air through his nose, bears down, and gets red in the face…but for no apparent reason. The feeding specialist saw him do this and said she thought he might again be attempting to clear his airway. And another is his chronic congestion. I thought he was chronically congested, and I mentioned to her that he always sounds congested, but often nothing comes out. She said that gurgly/rattly sound can again be due to aspiration. They call it “junky breathing.”
So hopefully all of these factors do not add up to aspiration, but I guess we’ll find out in three weeks. I do feel slightly vindicated, though. I brought up my concern about aspiration with his previous pediatrician (the one I dumped because I didn’t like her), and she dismissed my concern and told me “not to go down that rabbit hole.” She made me feel like an overprotective worrywart. Now, whether or not it turns out he’s aspirating, the feeding specialist, Sam’s OT, and his pediatrician have all made me feel like I’m not crazy for being concerned!
And one last bit about Sam: He has got this sitting-up thing down! If he’s not tired, he’s now a sitting champ! Once he figured out how to do it, he was off and running (err, sitting!). Lots of pictures of him sitting this week–he was happy to pose for me!
We had some fun activities this weekend. On Saturday, our friends Kim and Dave came down for a visit. Theo was delighted to have a captive audience for his newest obsession–watching videos of elevators and escalators on YouTube. (Don’t ask–I have no idea why he finds these so fascinating. But in the grand scheme of what he could find on YouTube, they are certainly a harmless pastime!) He and Dave also put on an impromptu Neil Diamond tribute concert, which I wish I could’ve seen! (I was in the kitchen but could hear him and Dave playing a rousing rendition of “Sweet Caroline.”) And we loved having some grown-up company!
On Sunday, it was cold but beautiful out, so we bundled up and went to Children’s Fairyland. Theo actually sat through a 10-minute puppet show! If you’ve ever seen Theo at story time, circle time, or anything that requires him to sit and pay some attention, you realize how amazing this is! He normally doesn’t last two minutes, much less 10! We were pretty excited by this development. 🙂 Theo always has a great time at Children’s Fairyland–there are just a lot of little areas to run around and explore, which is his favorite thing to do. And Sam snuggled up in the Ergo and eventually took a little snooze, so he was happy as a clam. Afterward, we finally went to a place I’ve been meaning to try for months: Vik’s Chaat Corner in Berkeley. Chaat is like Indian street food, and I love Indian food, so I was all over this! (Plus, Indian food can be friendly to those of us in the gluten-free, dairy-free world!) It was packed, but definitely a tasty treat. Chris got chicken biryani, and Theo and I tried some puffy, doughy things (not overly exciting) and delicious dosa (a crispy pancake with a potato and veggie filling–would definitely get that again!). When I can have dairy again, I’m all over the mango lassi, which looked so tasty (and practically everyone in the place had one, so I’m assuming they’re not to be missed).
Now on to Theo, who went back to school this week, much to his delight! I got an interesting call from his teacher on Tuesday. Historically, calls from Theo’s teacher have never been a good thing. It usually means he’s having a rough time of it. So when she called on my birthday, my heart sank a bit. But it turns out she was calling with a simple question…and some good news! The simple question was whether she should allow Theo to share in the class treat for the day–she knows we’ve been trying a gluten-free diet with him, and the treat was donut holes to celebrate Teacher Lorena’s birthday. I told her to go ahead and let him share them. I didn’t want him to be left out, and besides, the gluten-free diet for Theo has been a grand experiment, and it seemed like a good time to test the findings.
After clearing that with me, she said, “I want to talk to you about something”…and went on to say that she was delighted with how well Theo’s transition back to school after the holiday went. Knowing Theo and how rough transitions can be for him, she said she was prepared for him to have a hard time. But she said he was cheerful and chatty and not the least bit anxious–it was a smooth, painless transition back to school. And she said his behavior in general in December was really excellent. So good, in fact, that she was seriously thinking that we ought to try him in mainstream kindergarten with an aide to help with the initial transition (and then phasing out the aide). She said she’s afraid the autism class or special day class will be way behind him academically and he’ll be bored–and his social skills have gotten so much stronger that she’s feeling much more confident about him possibly entering a mainstream kindergarten.
Now, we still have the same concern: Mainstream kindergarten is 30 kids. Will that completely overwhelm him, like it did before? Will he be utterly stressed out? Entirely possible. But, the fact that we’re even able to consider that now is huge progress, and we’re delighted about that! Six months ago, it was a bad idea. Now, it’s a possibility. That’s progress…and we like progress!
Honestly, a lot of this progress is thanks to his occupational therapy, his preschool class, and his social-skills group. But we also think some of it may be due to the gluten-free diet. Because once we took gluten out of his diet, we started seeing improvement in his ability to focus, his willingness to cooperate, etc. And we let him have gluten one day, and his autistic behaviors seemed to get worse. It wasn’t pronounced enough that we were sure, but they seemed to get worse. (That’s what I’ve decided to call them, by the way–“autistic behaviors.” Because we’ll probably never know whether he really has autism, and in the end, it really doesn’t matter. But he does have “autistic behaviors,” whether they are actually due to autism, giftedness, or any of a host of other reasons. So we’ll say that–he has “autistic behaviors” that are sometimes more noticeable and pronounced than others.)
And then Teacher Amanda gave him the donut holes on Tuesday…and he came home from school Tuesday combative, argumentative, and having trouble with eye contact. Hmmm. All things that had gotten much better in the past month, when he had been off gluten. Interesting. I didn’t say anything to Teacher Amanda because I didn’t want to influence her opinion, but I sent my surly, argumentative son off to preschool Wednesday morning, and I was not surprised to read in his communication journal on Wednesday afternoon that he had been argumentative, tantrumming, and “acting like a teenager and not like himself” at school on Wednesday. That behavior continued through Wednesday night, and by Thursday morning he was back to being sweet, cooperative, and able to focus better. The autistic behaviors were fading again.
So you tell me–gluten? I don’t think it’s his friend. There’s a lot of anecdotal evidence that a gluten-free, dairy-free diet can help reduce autistic behaviors, and I think it just may be helping Theo, too. The change in his behavior after the donut holes was pronounced enough that both Chris and I went, “Whoa. No more gluten, dude!”
Anyway, I promised to talk more about schooling, so here goes. I found out that we need to enroll him for public-school kindergarten on February 5th. And I’m sure private-school deadlines are similar. So, it’s time to start figuring things out. After chatting with Amanda, we ruled out the autism class/special day class. Now we’re left with public-school kindergarten, private-school kindergarten, or homeschool.
In general, private school is just way out of the realm of possibility for us financially. And that’s probably fine, because most private schools around here have large class sizes anyway, and that’s what we’re trying to avoid. Theo does best in smaller environments, so that’s our ideal.
That said, there’s a private Waldorf school that just started in Danville (a neighboring town), and it is possibly affordable. It’d be a real stretch, but we could probably try to make it work. (It’s about half the cost of most private schools around here. Still expensive, but when you’re talking $10k/year as opposed to $20k/year, that’s a pretty significant savings.) And people around us have been talking up Waldorf as a good option for Theo–people whose opinion we respect. That is, not just some parent we met at the park, but people we actually know well. Theo’s OT, Nan, is in favor of it. Theo’s preschool teacher said, “I LOVE Waldorf! If you could afford it, that would be a great option for him!” My favorite professor from grad school, who has a brilliant adult daughter, can’t say enough good things about her Waldorf education. A friend from grad school (Roxann) taught Waldorf and loved it. Our friend Dave, who is studying to be a special-ed teacher, has firsthand positive experience with Waldorf. All of these people can’t say enough good things about it.
So, there’s our answer, right? Well…not quite. The biggest obstacle is the distance–it’s a 35-minute drive one way in good traffic. That’s quite a haul to do every day–and it’d be far worse during morning rush hour. And $10k/year, though cheap for a private education around here, is still a lot of money. A lot.
And the other issue is that Waldorf is just a very, very different educational model. And that may be a good thing–the educational system in California leaves a lot to be desired. But Waldorf is way, way outside the box. To the point that you really can’t switch back and forth. If you put your kid in Waldorf, you pretty much have to commit to that for at least six years, because if you transfer from Waldorf into any other school before that time, your child would be behind. (They delay reading and writing instruction until third grade. They have a good reason/philosophy behind this, which I won’t bore you with here, but suffice it to say that a Waldorf-educated child isn’t formally taught reading or writing until they’re about seven, so if you switch your kid from Waldorf into a typical second grade, he’s going to be behind. They catch up by sixth grade, but you pretty well have to commit to the Waldorf education until then.)
We’re actually okay with the delayed reading/writing instruction–as I said, they have a good reason and teaching philosophy behind it. And it’s not as if they tell your child not to read and write–they just delayformal instruction in it. The early years of education are focused on art and storytelling, engagement with nature, and gross- and fine-motor activities. These things, they believe, prepare the young children to better learn as they get older. The philosophy is long and complicated, and again, I won’t bore you with it here. But it’s very different. The public (and private) schools have been set up to train students for the working world, whereas Waldorf schools were designed to help children become deeper critical thinkers and more confident individuals. And supposedly, it works. Waldorf graduates have an incredibly deep knowledge base, supposedly, in a wide range of areas. And they have a great respect for people and for the environment, which are good things in our book.
But, to be honest, it’s a little weird. And weird could be good, but it’s weird. There’s a lot of myth and mysticism, and you almost feel as if you ought to be hanging crystals everywhere and meditating while wearing a crown of flowers. (I’m being flippant, but you get the idea.) For pragmatists like Chris and me, it would take some getting used to. And we’re a little “hippyish” in our own way, but still…it’s weird even for us. 🙂
And Waldorf does not like the use of any technology with children under the age of 12. Again, they have a thought-out philosophy and reasoning for this (which I won’t bore you with), and I understand where they’re coming from…but I’m not sure how realistic it is for us. Theo, like many kids, could stand to do with a little less technology at times, but actually cutting out all media is probably not going to happen for us. It’s a part of our lives, and frankly, Theo learns a lot from it. That’s not to say he wouldn’t learn equally well (or better??) without it, but it is to say that we don’t share their view that technology is evil for children under the age of 12. We’re much more of the “everything in moderation” school of thought.
The bottom line is that after meeting with the head of the Waldorf school and hearing people who I really, really respect rave about Waldorf, I feel as if Theo would come out of a Waldorf program as a confident, knowledgeable, terrific adult. And I want that for him! I want him to be happy and confident. I think it would be a great program for him. But I’m not sure it’s the right answer for us. Putting us (Sam, Theo, and I) on the road for hours a day back and forth to school would be a drag. Putting me in the position of working more so we could afford the education would be a strain. And trying to live by the “no technology, ever” dogma would be challenging, at best. (And there’s a part of us that balks at the idea of being told what to do in our own home. Obviously, it’s just a “suggestion” on the part of the school…but when does a “suggestion” turn into a judgment??)
So, we haven’t ruled out the Waldorf school, but I think we’re leaning toward the public kindergarten. And I hope I’m not letting Theo down by doing this, because I honestly have a lot of reservations about him in a large public school–his out-of-the-box thinking may just not be appreciated there like it would be at an alternative school, and I hope that doesn’t cause him to doubt himself and lose self-confidence. But I also have a lot of reservations about putting us in a stressful situation with a school that’s kind of far away, kind of expensive, and rather militant about the whole technology issue. 🙂
We also still haven’t ruled out the Montessori charter school when he’s in first grade, but they don’t have a kindergarten. We still love the Montessori philosophy and mindset for him–it’s just a matter of whether he can cope with the child-directed atmosphere. That overwhelmed him at his Montessori school here, and we’re not sure whether he’s matured to the point where it wouldn’t overwhelm him again. There are parts of the Montessori method that are a perfect fit for Theo–but he needs to be able to handle it for it to work for him. And we’re not yet certain whether he can.
So, that’s where we stand with the school decision. No decision has been made yet, but we’re closing in on something. And then I can stop obsessing over it. 😉
Anyway, have a wonderful week, all!
JAN 6, 2013: HAPPY 2013!
Hello and happy 2013, all!! I can’t say we stayed up to ring in the new year, but Sam did get me up several times that night, so I greeted the new year before the rest of my little family. 🙂
Chris was off work until January 2nd, which was lovely! We mostly stuck close to home, visiting parks and such, and it was really nice to have a little “stay-cation,” as they call it. I felt rested because Chris took the boys every morning so I could get some sleep, and it ended up being a very nice break for all of us! (Yes, even Chris, despite him taking the boys early every morning!)
But all good things must come to an end, and he’s now back at work. And tomorrow, Theo goes back to school! He’s very excited about that–he can’t wait to tell Teacher Amanda about all of the fun things he’s been doing. One day, we went to the Lawrence Hall of Science and met Ray, Beth, and their kids and nephews for a play date–what fun! Theo had a ball exploring all of the exhibits. That is such a neat place–we may have to get a membership there this year.
And we went ice skating yesterday! Well, mostly I did, but Theo enjoyed it somewhat, too. My birthday is Tuesday (I’m about to enter the last year of my thirties–yikes!), and since Tuesday will be just like any other day around here (preschool for Theo, work for me and Chris, nothing exciting…), I wanted to sort of “celebrate” on the weekend. So on Saturday, we drove up to Santa Rosa to go ice skating! There’s actually a temporary rink here in Walnut Creek, but it’s outside and it was very cold and rainy. Definitely an indoor-rink kind of day!
Last time, Theo really enjoyed ice skating. This time, he had a love/hate relationship with it. He was kind of hungry, having only picked at his lunch (at an Indian food buffet/salad bar with lots of yummy gluten-free choices!), and so he was sort of tired and stumbling a lot, which frustrated him. So after a couple of trips around the ice with me, he happily traded in his skates for a tray of warm French fries in the café overlooking the rink, with Chris and Sam. Meanwhile, I skated happily! I love ice skating–it’s one of the few sports that I’m actually halfway decent at, and I really enjoy it. So I was perfectly happy to skate around the rink on my own while the guys had their snack.
The celebration continued on Sunday, with Grandma Kathy and Papa coming up to babysit the boys while Chris and I went to a movie and an early dinner. We saw This Is 40, which was pretty amusing, and went to dinner at a fancy little wine bar that Auntie Lisa had gotten me a gift certificate to. It’s the first “nice” dinner we’ve gone to in over a year, so it was a real treat! Besides wine, they feature “small plates,” so I ordered filet mignon with red-flannel hash (my new favorite beet dish!) and a side of the best mushrooms I’ve ever had (with a soft-poached egg and bacon marmalade–to die for!). Chris ordered ahi tartare and garlic French fries. He had a cup of coffee and I had a glass of sangria–yum! Unfortunately, I realized after the fact that the mushrooms had dairy in them, so I may have a rather grouchy baby for a couple of days, but oh…they were so good!!
The big news of this week came on Saturday. Chris and I were both feeling a little bit blue because Sam’s delays are becoming a bit more apparent. I see now why they say the first birthday is hard when you have a baby with delays–suddenly, his same-age counterparts who have been crawling for months are starting to pull up to standing, trying to take steps, saying “mama” and “dada,” and so on. And suddenly the delays are apparent. So it’s not like we live in a world of denial and don’t recognize that Sam has delays–but they just weren’t overly apparent. And now they’re a bit more so, so we’re just learning to adjust to that. I mean, when he should be starting to think about taking that first tentative step, he’s not even able to sit up on his own for more than 30 seconds. And I’m sorry, but we wouldn’t be human if that didn’t make us just a little bit blue….
And your heart just kind of goes out to the little guy, who’s working SO hard for milestones that come SO slowly. I mean, with Theo, it was like with most babies–suddenly one day, he was sitting up! And voila! He could just sit! But with Sam, we’ve been working for months on sitting up–over and over and over. And the progress just inches along. Which is fine–it just is what it is, you know? You make the best of it. But it doesmake our hearts hurt a bit on Sam’s behalf when we see how darn hard he has to work to do what comes easily to many babies.
So anyway, we had a good talk in the car about how we were just struggling a bit, and we both felt better after the talk. And then we got home, and Sam proceeded to sit up unassisted for seven minutes!! He was in front of a toy and periodically propping himself up by holding onto it, but he would also remove his hands and just sit unassisted! And I think we both cried some tears of happiness over that! It’s as if he was saying, “You worrywarts! What are you thinking? Of course I’ve got this!” Up to that point, he had never sat unassisted for more than 60 seconds, and most times not more than 20 seconds! And suddenly, he did it for seven minutes!!
Don’t get me wrong–it’s not as if he can just sit up all the time now. If he’s tired, he topples. If he’s not positioned exactly right, he topples. But he did it for seven minutes, and we want to throw a party about it!! Yay Sam!! So that was definitely the highlight of our week!
And actually, he followed that up by sleeping for a four-hour stretch, which is the best he’s done in months, so that was doubly nice. 🙂
Speaking of sleep, Chris and I also had a talk about sleep strategies. He is more willing to try cry-it-out methods than I am. Not because he’s cruel, but because he just doesn’t think Sam is going to learn any other way–we’ve tried everything, nothing works, and he feels like cry-it-out is our last option. And if you could tell me with certainty that letting Sam cry himself to sleep for, say, three nights would fix his sleep problems, I’d probably be swayed. But I’m not convinced that it would fix the issue. I think he’d just collapse out of exhaustion, and that’s not a fix to me–it’s a Band-Aid.
So anyway, in our discussion about this, Chris asked me outright what it is about cry-it-out that bothers me. And I had never really thought about it in much depth, so I did. And I realized what it is. I don’t personally like it for any baby, but I like it even less for Sam than I did for Theo. (We didn’t really do it much for Theo, but there were a couple of times where we ended up just letting him go for 10 or 15 minutes. But he was developmentally older than Sam at the time, and I felt like he might besomewhat understanding it. And for the record, I cried every bit as hard as Theo when we did it. I hated every second of it.)
So why am I so adamantly opposed to it for Sam? Well, first because I remember how awful I felt when we did it with Theo. But more so, it’s because babies with DS just aren’t as robust as typical babies. On my forums and in my groups, I keep hearing horrible stories about babies and kids with DS dying. Don’t get me wrong–the vast majority are relatively healthy and live reasonably long lives. But there are a fair number who just pass away. I recently heard about one with sepsis who died (at age two months). A six-year-old girl supposedly had a stomach bug–and ended up dying. Another six-year-old suddenly died of a pancreatic issue. They get leukemia. I could go on, unfortunately.…
So although we have every indication that Sam will live a nice, long, healthy life, there’s a part of me that lives in fear of losing him. And when he starts to really cry (I’m not talking just fussing–I’m talking full-on screaming), he gets so upset that his whole body quickly gets covered in sweat, and he’s beet red. (Theo never did that–he got the typical red-faced scream, but his entire body didn’t flush, and he didn’t get slick from all the sweat on him.) And there is a tiny, paranoid part of me that thinks, “What if I leave him to scream, and the unthinkable happens? And the last thing my baby knew in this world was that I, the person who was supposed to love him more than anyone, just left him to scream in the name of ‘teaching him to suck it up and self-soothe’?” And I’m just not okay with that. I know what happens when he gets so worked up that he’s beet red and covered in sweat–I pick him up, and the hiccupping sobs stop, and the tiny little hand wraps around my neck while the little sweaty red face buries in my shoulder and nuzzles. And the whole little body relaxes, and all is right with his world. And he knows that I’m there for him.
So yes–maybe I’m spoiling him. But I’m okay with that. I’m tired, yes—and I may be very tired until this sleep thing resolves. But at least I’m comfortable with my approach. So there you go–if you wondered why I’m so vehemently opposed to letting him shriek himself into exhaustion, that’s why. I think I live every day with Sam as if it could be his last. Which may sound morbid, but in a way it has taught me to cherish the time I have with both of my kids. I just don’t take anything about my kids for granted anymore, I guess. Which certainly doesn’t mean I’m some paragon of virtue who never loses her patience. Far from it! But it does mean that when I look at that long road of sleeplessness stretching ahead and weigh it against letting Sam scream himself silly in an effort to “teach” him how to sleep, I choose the long road. And I fall asleep sitting up at my desk, snoring softly (or so Chris tells me!).
As long as we’re on the subject of Sam’s sleep (or lack thereof!), I’ll share my latest attempt to get the little turkey to sleep better: essential oils and aromatherapy! Honestly, I’m skeptical of this, but I figured it’s worth a try. I’ve tried everything else (except, of course, the good ol’ cry-it-out method), so I might as well try this. Several mothers in my Down syndrome groups mentioned using essential oils for various issues related to Down syndrome–namely, poor sleep, congestion, and constipation. Sam has all three of these issues, so I decided to do some investigating. It turns out that one website that sells aromatherapy/essential oil products is run by a woman with eight kids–one of whom has Down syndrome. So a number of mothers in the DS community have ordered through her. And so I did, too. After chatting with the woman via email, I settled on Myrtle (for congestion), Digestion Support (for constipation), and the Peaceful blend (hopefully for sleep!). I’m also interested in the Lung Health blend to further help with congestion, but I decided to try these three first.
So, our oils and diffuser came a few days ago, and I’m trying them out. I swab a tiny bit of Myrtle under his nose before I put him down for a nap or bed. (I tried it on myself, too–it smells lovely!) I rub a drop of Digestion Support on his belly when I do what I fondly refer to as his “poop massage” (it’s just a baby abdominal massage his OT taught me). And I diffuse the Peaceful blend in the bedroom while he sleeps, through a diffuser (which is kind of like a humidifier).
It’s too soon to tell whether it will make any difference, but it certainly doesn’t seem to be doing any harm. I haven’t had to suction his nose in a couple of days, so that’s a start! And if nothing else, our bedroom doessmell quite lovely from the Peaceful blend, which has lavender, ylang ylang, eucalyptus, and a few other bits in it.
So cross your fingers that the “voodoo” essential oils do the trick! Surely something has to…
On that note, I bid you adieu! I’m off to find a recipe for a yummy gluten-free dessert for my birthday! As wonderful of a hubby as Chris is, I don’t think he’ll be whipping up a GF dessert for me–I think I’m on my own for that! He is, however, making me his famous spaghetti for the big day–the one that made it into our wedding vows! With gluten-free pasta, of course….
My apologies that there aren’t many pictures this week. I didn’t have my camera on hand for our biggest outings!
Happy week, all!