Jan 26, 2014: Ch-ch-ch-changes!

Well, we have a lot of changes going on around here, and first and foremost is that I have a new roommate. That’s right, I traded in my tiny, milk-loving, adorable, sleepless roommate for a 37-year-old thinning roomie who snores but is a much better conversationalist than my previous roomie. And while I do miss the tiny roomie, the new roomie is quite pleasant as well.

This is actually a huge change, because Chris and I have rarely shared a bedroom in about four years. And no, it’s not because of any marital problems; rather, it was a marriage saver! I am a notoriously bad sleeper who has suffered from insomnia for pretty much my whole life, and Chris is a very noisy sleeper who snores and thrashes around a lot. So when we shared a room, I would want to kill him because he would disturb my already lousy sleep, and he would want to kill me because I was constantly jabbing him and hissing, “Stop snoring!” or “Stop thrashing!” And so, because we value our marriage, we found that separate rooms worked better. And then Sam came along and ended up being in my room for a lot longer than planned, so Chris slept in Sam’s room. Sam wakes up all night long, and I have to wake up with him anyway—so at least one of us should get a good night of sleep, we figured. And that way, Chris could handle any Theo wakings at night, and I only had to deal with Sam’s wakings. It worked pretty well.

But as you know if you read last week’s blog, we left Sam overnight for the first time last weekend, and what did the little booger do? He slept all night long. No wakings. GAHHHHHH!!!! So, as I have wondered many times in the past sleepless 18 months, I wondered whether it’s my presence in the room that causes him to wake. They say babies can smell their mother’s milk—maybe he smells me and wakes to eat for that reason. Plus, Sam is becoming less of a baby and more of a toddler in the sense that he is developing an attitude lately! He’s becoming a rather cranky little turd when he doesn’t get his way, so I decided that it would be best to make the big bedroom switch before he gets much more set in his ways.

So, on Friday night, we made the switch. Sam now sleeps in his very own room, and Chris no longer sleeps in a room decorated with duckies and froggies and such. So far, so good. Sam has adapted well to his new surroundings, although he’s not sleeping any better (or any worse) than he was before—he’s still waking. (Which actually makes me feel slightly satisfied, as I know there was a camp of folks who felt like, “Well, if she’d just put him in his own room, the problem would be solved!” Um, no. It’s the same as before. No better, no worse. Such is life.) And I’m actually enjoying sharing a room with Chris again. I’ve been using a weighted blanket for about a year, and I think it has helped my sleep. I still wake frequently to use the bathroom (and of course to tend Sam), but when I’m asleep, I seem to be sleeping more deeply than I used to. Chris isn’t waking me up snoring, and in fact I’m not even waking up for the baby monitor when Sam cries—Chris has had to wake me every time! Sheesh, if Chris is ever out of town overnight, poor Sam’s going to be in tough shape, since apparently his exhausted mama just sleeps right through his fussing in the baby monitor!

The downside to these sleeping arrangements is that now I not only get to wake up anytime Sam does, I also have to wake up whenever Theo needs something, since Chris will be in the same room with me. And Theo wakes a couple of times a week with wet sheets, so…yay. Oh, plus, three days a week I’ll get woken up by Chris’s alarm at 5:20, when he has to work in the office. Double yay. (I have to be up at 6:30 anyway, so it’s not like I’d go back to sleep for an hour. If I get woken up at that hour, I’m up for the day.) Oh well, I’ll adjust….

The other big change is that Sam is starting “school” at the beginning of March. I visited the developmental center where he’ll be going on Wednesday, and we’re all set to go in March. Which I have mixed feelings about. I know it’ll be good for him, but I am so going to miss having my little buddy around! And it’s going to completely trash his naps. He has to go to school from 8:30 to 1:00, and he typically naps at 11:00 a.m. So he can nap at school, but they just put him on a beanbag and cover him with a little blanket and let him snooze in the classroom, which I suspect will mean he’ll take a 45-minute catnap, and that’ll be it for the day. And honestly, I thought about asking them to keep him awake so he could just take a proper nap at home, but then he’d sleep from 1:30 to probably 3:30 each day, and I’d only really see him for a few hours a day—from 3:30 until he goes to bed at 7:30! And that just isn’t okay with me—part of why I work at home is so that I can spend time with my kids. Four hours a day isn’t enough. Not gonna work. So, I guess he’ll just be taking short naps whenever he drops at school. In the end, it’s probably for the best—he is notoriously cranky when he takes an afternoon nap. I’ve spent the last nine months trying to shift his nap to the early afternoon (because the 11 a.m. nap completely messes up me trying to pick up Theo from school), but it’s no use—the kid is ready to sleep at 11 a.m., and that’s when he sleeps. So be it.

The school visit went pretty well. I didn’t cry, so that’s a success. There was a bit of a misunderstanding, in that the director thought I wanted Sam to go five days a week, as most of the children do, and she seemed a bit taken aback that I only want him to go three days a week. (Aside from the fact that five days a week is a lot, he has therapies on Tuesdays, and I babysit another little boy on Thursdays—and I’d just be sad to be watching Max and not have Sam around. So I might as well keep Sam home on Tuesdays and Thursdays and just have him at the center on Monday, Wednesday, Friday.) But she recovered quickly and informed that they do have a three-days-a-week spot opening in March, so we can have that one. And I actually was pleased about that, because I like the classroom for that spot better than the one for the five-days-a-week spot. I visited both, and the one for five days was fine, but it was a little dark and just not as inviting. When we walked into the three-day class, on the other hand, it was bright and cheery, and the teacher’s face lit up when the director announced, “Change of plans—Sam will be in your class instead of the other one.” She clapped her hands and said, “YAY! I’m so excited! We’ve heard so much about Sam!” Plus, Sam’s little buddy Declan, from the Down Syndrome Connection, is already in that class, too. When we visited, I put Sam down next to Declan, and they immediately played peek-a-boo with each other!

Turns out Sam is a mini-celebrity at the center. Everyone we saw immediately said, “Oh my goodness, is this Sam?! We’ve heard so much about him!” Sam’s infant development specialist, from the Regional Center, works at the center, and evidently she’s been talking up Sam. 🙂 We also got to meet the speech therapist on site, who was really pleased with Sam’s communication skills—in fact, she said we had done a great job with him speech-wise, because he makes eye contact, signs, tries to imitate sounds, and clearly attempts to communicate. Wheeee!

Speaking of communication, the little turkey is one smart cookie. This week I discovered that occasionally, he will eat a squeezie pack of fruit while sitting in the grocery cart. But only if I don’t touch it. If I so much as touch the bottom to make a little more fruit come up the tube, he starts screaming and throws it. So at the store this week, he had a little hissy fit about the fact that I had touched his squeezie pack, and he threw it on the floor. I said “No” and signed “no”—and then handed it back to him. He threw it again. I repeated, “No—no throw, Sam!” and signed “no” and put the pack in the cart where he couldn’t reach it. Naturally, he wanted it back. I repeated, “No, you can’t have it because you threw it” and signed “no” at him again. He looked at me, smiled, and carefully moved my “no” sign into a “yes” sign with his hands. Um, nice try, child! Still not gonna happen…

Anyway, I digress. In March, Sam will start at his school. He actually has to go with a little backpack, which is ridiculous because he could actually fit inside most backpacks! I did manage to find a tiny one at Ross, but it’s still huge for him. And I have to send him with a lunch that he will undoubtedly just throw and refuse, unless it contains kettle chips, fish crackers, or pretzels. Oh well, good luck, teachers—maybe you’ll have better luck feeding him than we do!

Speaking of feeding, he’s clearly not suffering from his hunger strike. We had his two-year appointment this week, and he is holding steady at 25th percentile on the Down syndrome charts for weight. (He doesn’t even register on the typical charts—he’s way too small.) At two years old, he tips the scales at a somewhat pathetic 20.5 pounds. (For reference, most one-year-olds weigh a bit more than that.) But his doctor isn’t concerned, because he isn’t losing weight—just not gaining. And most kids don’t gain much between ages 1 and 2 anyway, so he’s not outside of the norm in that respect. Tiny but mighty!

What is a bit of a concern is his thyroid. He appears to have subclinical hypothyroidism, which is very common in Down syndrome, and which is a fancy way of saying “will likely have thyroid problems later in life.” The issue is whether to treat this. The medical community is split on this—some say not to treat it until it becomes full-blown hypothyroidism. Others say it’s better to treat it early, because thyroid problems can cause “mental retardation.” (Yes, that’s what the medical literature says. They need to update their terminology!) In my Down syndrome moms group, there are quite a few kids Sam’s age and younger being treated for subclinical hypothyroidism—and in all cases, the pediatric endocrinologists were concerned with any TSH number over 3, and definitely felt treatment was warranted if the number exceeded 4. On Kaiser’s tests, 4.5 is the cutoff for “normal” on the TSH test. Sam’s TSH number this time was 6.72. So he’s quite a bit over the Kaiser threshold of “normal,” and he’s way over what the pediatric endocrinologists who are treating his peers are comfortable with. But Kaiser doesn’t wish to treat him at his current level—they said he’s fine unless he exceeds 10. And I’m not sure I’m okay with that. In fact, I think I may not be okay with that. Because what I’ve learned about Kaiser is that they seem to have a standard treatment plan that is based on standard individuals. Sam’s extra chromosome throws a bit of a wrench into the mix—his body reacts differently from a standard individual’s, so I’m not sure the Kaiser standard treatment plans are always the best thing. And the thing about hypothyroidism is that it impairs cognitive development, and cognitive development is crucial before the age of 3. And because kids with DS are already cognitively impaired, I think many pediatric endocrinologists opt to treat rather than ignore because the side effects of treatment are mild and few, and the potential cognitive benefits are many.

Obviously, I’m not a fan of giving medicine when medicine is not needed, but I have a feeling it might be for the best in Sam’s case. So, I’ve emailed his pediatrician and asked to speak to the pediatric endocrinologist. Hopefully we can get something worked out that I feel more comfortable with than just ignoring it. Sigh…

Speaking of Down syndrome and medical issues, I went to a medical outreach group meeting this week, and we were putting together the packets that we’ll be distributing to hospitals in the Bay Area. Guess who the cover boy for the packet is? None other than my adorable little son!! He’ll be gracing delivery rooms all over the Bay Area soon enough, ready to provide service to families who have a birth diagnosis of Down syndrome!

And before I move off the topic of Down syndrome, if you want to watch a neat video (and you have nine minutes to spare), check this out. It’s a father’s story of his teenage son. He’s South American, so it’s subtitled, but it’s a neat story. And the scenery is lovely, since they’re taking a road trip through Patagonia. Great story!

Oh wait—I lied. One more Down syndrome–related thing. I met with a person I trust in our school district this week. (I shan’t mention whom, just in case it were to come back to her in some way. Not that we did anything wrong, but still—best not to mention names. Suffice it to say that it’s someone who works in the district and whose opinion I trust.) I wanted to find out whether what I’m hearing from parents is correct—that Sam will just be put in the severely handicapped (SH) class when he enters the school system in 12 months. Um, unfortunately, that does indeed appear to be true. Kids with Down syndrome are automatically placed in the severely handicapped class. I’m not thrilled by that. And my friend in the district agreed that it wasn’t necessarily ideal, but she did at least say that she very much likes the teacher of the local severely handicapped class, so that’s something. I do think that a good teacher is crucial, but I also think that the class makeup is crucial. I’ve been told by many people that kids with DS are big imitators, and they learn a lot from their peers—which can be a good thing or a not-so-good thing. If the SH class is made up of students who are functioning below Sam’s level, he won’t have a peer model to challenge him, if that makes sense. Ideal for Sam will likely be a class that has some students who are ahead of him, so that he has something to work toward—people to emulate. But I’m not sure that will happen in the SH class. It really depends on the kids who are in it when he enters it next February. It might be an excellent group of kids to be his peers, or it might be a class that’s moving at a slower pace than he needs. And if the latter is true…well, then we’ve got a problem. Because my sources aren’t overly optimistic that we could get him placed elsewhere. Though my friend from the district did comment that one possibility is to have him in the SH class a couple of days a week and in a standard private preschool the other days. The roadblock to that, of course, is cost—whether we can afford a private preschool is very questionable. Technically, the district should pay for it. They have a responsibility to school him in the “least restrictive environment,” which essentially means the best possible environment for him. And if they can’t provide that at a public school, they are supposed to pay for private. But as I’ve come to understand, there are many loopholes to that rule, and parents end up taking the district to fair hearing and then don’t win. So…oy vey. We’ll just have to wait a year and see what they propose, but I’m not feeling too optimistic about the whole thing at the moment.

On the subject of learning, I had my first piano lesson this week! What fun! I’m using the same teacher as Theo—a college girl whose parents own a consignment shop just down the street. She was excited to hear that I can sort of read music (very basically, but at least it’s something), so we’re going to jump right into working on songs. Yay!

I’ve also decided to continue my self-improvement by undertaking the Couch-to-5K challenge when Sam starts school. I should just work when he’s in school, but I’m going to take 30 minutes a day for some exercise. I’d like to lose a few pounds, but I also just want to improve my general health. When I used to walk eight miles a day, I was never sick. Now I get no exercise, and I’m sick all the time. So I need to get back to some moderate exercise. I’ve always said I can’t run because every time I try, I feel sick—my tongue swells up (as weird as that sounds), and my heart problem (which is very minor and not at all serious) gets kind of wonky. But I’ve always wondered whether it’s true that I can’t run or it’s more that I just haven’t trained correctly. So the Couch-to-5K, which is a program many of my friends have done, eases you into jogging very slowly, with short intervals of running and walking. I figure I’ll give it a try. We live in such a lovely area for walking/jogging that I think I’ll enjoy it. We have a trail right near our house that is always in use by lots of walkers and joggers and people out with kids in strollers, so that’ll be a nice, safe place for me to practice—and get a little time that’s not raising kids and not working! Wish me luck!

Speaking of work, I finally got feedback on my Malala manuscript. I don’t want to be a pompous jerk and toot my own horn, so I’ll just say that it was positive feedback that I’m very happy with. 🙂 I have some revisions to do, but they’re minor. I felt really good about the manuscript when I turned it in, and it’s good to know that the publisher feels good about it, too!

Wow, I just realized I’ve barely mentioned Theo this week! He’s doing well—not much going on. He had a piano lesson, he had school…the usual. They did cooking in school on Friday and he had gluten, so he’s been…challenging…this weekend. But it’ll blow over. And the poor kid is covered in a rash on his bottom and legs, so I don’t blame him for being kind of agitated. I made homemade yogurt this week (so fun and so easy!), and I gave him a tiny bite. I mean tiny—it wasn’t even 1/8 of a teaspoon. And he broke out in a rash shortly thereafter. Sigh…weird dairy allergy! Pizza is okay, whipped cream is okay, soft-serve ice cream is okay…but sour-cream chips and whole-milk yogurt are horrid! I had thought the yogurt might be okay because I made it out of organic, no-hormone milk—basically, the least-processed stuff I could find that wasn’t raw milk (I don’t trust raw milk). And that’s the only ingredient, other than the yogurt starter, which was also organic and largely unprocessed. But evidently it’s a no-go for him. Oh well, more yogurt for me and Sam (if Sam will eat it—that’s always questionable). It is absolutely delicious, I must say!

As for fun outings, Chris had MLK day off on Monday, so we went to a park in San Carlos we like. We had a picnic, and I looked like Mother of the Year as my baby sat on a blanket with a bag of kettle chips in his lap, eating potato chips and nothing else. Sigh…at least Theo was eating a big salad, so people knew that one of my kids doesn’t eat crap!

On Saturday, we went up to Davis to meet our friend Kim for lunch, and then we met up with Billy and Sarah, who were in Sacramento with their kids for the weekend. Lots of park play, lots of fun! I also stopped at my favorite kids’ learning store in Davis and got Theo a poster of all the presidents—he has suddenly decided he wants to learn about them. Love seeing where his mind takes him!

And on Sunday, we stayed close to home with a trip to our local wildlife museum, where Theo go to pet a snake and a rat! Sam found a truck to play with, so he was happy.

Speaking of Sam, he turns two in a little over a week! Where has the time gone?!

Until next week, folks, enjoy your last week of January!

Leave a Reply

Your email address will not be published. Required fields are marked *