Well, folks, it’s the end of an era—Theo has officially finished his time at Shadelands Preschool. I have to admit, I got a lump in my throat when I unpacked his bag on Friday and found all his nametags for his cubby, coat hook, etc., as well as all of the pictures of him that had been posted around the room. What a great experience we had at Shadelands—and it’s funny, because him starting there was one of the more depressing parts of our life as a family. He had just been diagnosed as on the autism spectrum, and he was in such a bad space—stressed out, behaving poorly, and generally unhappy. He was miserable, and we felt helpless. And then enter Shadelands and the wonderful people there—and things began to look up. And a year later, what a different little boy we have!
Ah, we will miss Shadelands, for sure. Though who knows—Sam may go there in a year and a half, when his care transfers to the school system. There’s a big push for kids with DS to be fully included in mainstream preschools, but I’m not entirely sure I agree with that. Sam will be behind his peers, and I think there’s some merit to a program that’s designed to help children catch up in areas where they’re behind—which is exactly what Shadelands is. If we want him to be in a mainstream kindergarten, in theory, the best preschool for him might well be one that is designed to catch him up in the areas where he’s delayed. We’ll have to see what three-year-old Sam is like, but there’s a chance we’ll want him in Shadelands anyway. And if we do, I will push to get him in Amanda’s class, because I can’t say enough good things about her as a teacher and as a person. Sam would be lucky to have her for his teacher, just as Theo was.
Anyway, we move onward and upward, to mainstream kindergarten, in five weeks. Wow… Just yesterday, Theo was a tiny, screaming baby! And now…off to kindergarten. Next step, Stanford. Or the federal penitentiary. I’m not sure which. (Kidding, of course! Well, I hope so, anyway. Chris and I figure Theo will either run the world or be indicted for masterminding some elaborate Ponzi scheme someday. We’re hoping he chooses to use his powers for good….)
As long as we’re on the subject of special ed and such, I’ll share that Sam had his speech evaluation through Regional Center this week. He had one through Kaiser a couple of weeks ago, but our Regional Center caseworker wanted him to have one through Regional Center, too. (Sad news: We have the best caseworker at Regional Center, I’m told. When anyone in the special-needs community hears we have Chrissy, the immediate response is, “You’re so lucky! She’s the best one there!” Alas, Chrissy is now moving on to bigger and better things, so we’ll be getting a new caseworker. And honestly, I have not heard good things about most of the other caseworkers, so I’m not feeling overly optimistic about this change. Ick.)
Anyway, I digress. The speech-language pathologist came over on Wednesday to evaluate Sam’s speech, and it was…well, kind of depressing. And kind of good. It was good because he definitely qualifies for speech therapy—no question. It was depressing because I had to answer “no” to pretty much every “Is he doing XYZ?” question the woman asked. I wanted to say “yes” to something, but he really is quite delayed on language development, so…well, there were just a lot of no’s. It wasn’t fun. But on the bright side, he definitely qualifies for speech therapy. I’ll focus on that happy bit, okay? It’s better than the alternative.
Sam being Sam, though, he decided to surprise us the day after the evaluation. The evaluator wasn’t thrilled that he wasn’t doing anything on command yet–for example, not raising his arms for “So big!”, not clapping if you ask him to clap, not looking at me when asked “Where’s Mama?”, and so on. Evidently, he should be doing some of that. And he would do some things–just not on command. For example, he’d raise his arms above his head–just not when I’d say “So big!” But! But! But! The day after the speech evaluation, he started raising his hands for “So big!” It’s as if he wanted to say, “What? You think I can’t do that? I just didn’t want to be your trained monkey, people. I can do that anytime I want!” So there, speech lady! Though speech lady was actually quite nice, so I’m not annoyed with her. It’s not her fault it was a semi-depressing experience.
In other Sam news, he had his follow-up sleep study this week. I was really dreading it, but it went okay. I certainly wouldn’t say it was fun, and I hope his apnea has resolved so that we never have to do it again, but at least I didn’t have to flee and drive home in the middle of the night this time. Sam screamed and screamed and screamed when they were putting all the wires on him—and it took close to an hour. He was sweating like crazy, which makes the leads not stick very well, and I felt awful about having to restrain him while they kept sticking wires and such all over him. He just cried like crazy. But after they finally got everything hooked up and let me nurse him, he settled down. By then it was an hour past his bedtime, but he stayed up for two more hours, just lying in my lap and cooing at me, looking adorably like Frankenstein’s monster. Oh, and pooping—he decided to poop after he was all connected, and I had to call the nurse to come unhook him so we could change him. (I was trapped underneath all of his wires, though, so she took one look at us and said, “How about if I just change his diaper?” I gamely took her up on that! Since when does someone else offer to change my kid’s poopy diaper? Sold!)
I finally got Sam to sleep by singing…and singing…and singing…. When I finally heard him snoring, I breathed a huge sigh of relief and tried to go to sleep myself. But it was very cold in the room, and I couldn’t get warm. Plus, I had to share a bed with Sam, who, much like his brother, kicks and fusses a lot in his sleep and is generally not a good bed partner. And they had these arm braces on Sam’s arms so he couldn’t pull the oxygen out of his nose or the leads off his head, but they also made it so that he couldn’t roll onto his side or belly—so he was really restless. And then he woke to eat around midnight, and it took me another hour of singing, singing, and more singing to get him settled back to sleep. All told, I got about two broken hours of sleep all night long. But on the plus side, Sam got a four-hour block of sleep between 1:30 and 5:20 a.m. (when they woke us to kick us out and send us home), so I think they probably got the data they needed this time. Fingers crossed that we get good results!
And I might as well wrap up the Kaiser chat here, since I’m talking about medical stuff…. I had the long-awaited phone conference with the developmental pediatrician (who we contacted over a month ago, when Theo was having some pretty serious behavior issues for quite an extended span of time). The funny thing is, Theo has settled down quite a bit in the past few weeks—I suspect it’s a combination of a bad influence in school not being in his class anymore (Amanda had told me that Theo tended to watch this kid like a hawk and imitate his negative behaviors…sigh….) and the melatonin making him sleep much better. But, despite the recent calmness in Theo, I kept the appointment with the developmental pediatrician, because we know Theo well enough to know that cycles of negative behavior come and go with him, and we likely haven’t seen the last of this recent bout.
I won’t bore you with all the details, but the developmental ped suggested that we have him tested for ADHD when he’s six. I don’t know whether we’ll do that. We have plenty of time to think about it. We haven’t felt that he meets the diagnostic criteria for ADHD…but on the other hand, we’re not doctors. We know our kid inside and out, but we’re not infallible in our judgment–even though we don’t think he has ADHD, I suppose it’s possible he does. Anyway, we’ll consider it and see how he does in this first year of kindergarten. And when he turns six, we’ll decide what we want to do…or not do.
But, more interestingly, perhaps, the pediatrician suggested that we stop using time-outs for him, except in cases where he’s showing physical aggression. (Honestly, those cases are very rare. He’s not an aggressive kid. About the extent of it is him trying to scratch or kick us if he’s really mad. But even that doesn’t happen often. He’s more self-destructive than aggressive toward others…which makes me sad and is a whole other story for another time.) I was actually glad to hear this advice about time-outs, because Chris and I have long felt that time-outs are completely ineffective with Theo. They may work with some kids, but they have never worked well with Theo. And the pediatrician agreed and said with a kid like Theo, “planned ignoring” is a better approach. Like a lot of kids, Theo doesn’t care whether attention he gets is negative or positive–he just wants attention. So, she said we should ignore negative behavior (and him) rather than punishing for it. The ignoring, she thinks, is going to be more painful for him than punishing. I suspect she may be onto something, because Chris and I have practically beat our heads against the wall trying to find a punishment that Theo actually cares about, and there’s nothing. Taking away toys, TV, iPad, privileges, etc.—none of it really works to improve his behavior. He gets mad, sure—but he doesn’t care enough about it that it motivates him not to do negative behavior.
So, we’ll see how planned ignoring works. She did warn me that it’s likely to get worse before it gets better, because he’ll escalate his behavior to try to regain our attention. But she claims that in about three or fours weeks, we should see generally improved behavior. Oh, lucky me–three or four weeks just happens to correspond to the time he’s off school!
Anyway, if you’re around us in the next month or so and wonder why we’re ignoring our son’s lousy behavior, that’s why. 😉
You know, Theo has certainly prepared us well for Sam and any other kids who might join our family someday. We have tried pretty much every type of discipline/parenting approach with him. So when it comes time to figure out how best to parent and discipline Sam, we’ll be old hat at so many options! We can just sort through our bag of tricks, pull one out, and see how it goes! See, I think Theo did us a favor, making us revise our parenting strategies a zillion times. He just wanted us to get familiar with all the parenting schools of thought! 😉
But let’s move to a positive note about Theo: swimming! He started swim lessons this week. His teacher was recommended to me by several local people, and I’m impressed with her so far. She’s friendly but firm, and Theo seems very comfortable with her. He is not, however, comfortable with putting his face in the water. Well, he wasn’t early in the week, anyway. He has a 30-minute lesson every day, and Wednesday was the worst day this week–he screamed and cried and argued mightily about putting his face in the water. I talked to Karen (his teacher) after his lesson and asked whether his level of apprehension was typical. She alluded to the fact that he does react pretty strongly to it…but said that he’s not the first kid she’s worked with to do so. She said she worked with a similar seven-year-old a few years ago, and he’s now swimming. So…we soldier on.
Thursday, Theo decided he wanted to try wearing goggles before putting his face in the water, and that seemed to help a bit. Last year, goggles did nothing–he still wouldn’t do it. But this year they seem to be helping a bit. Chris took him to swimming on Thursday, and he reported that Theo did fairly well–some fussing and crying, but not too much. And on Friday, a small miracle occurred—Theo put his face in the water willingly! He wasn’t happy about it, but he did it willingly and without crying. Hooray!!! I was so elated that I treated him to a chocolate soy milk afterward, much to his delight. I’m not above bribery. 😉
Anyway, we’ll see how he does next week, but this is certainly big progress for him!
Let’s see…what other fun things did we do this week? Chris’s and my friend from grad school, Briagha, came to visit on Tuesday. She used to babysit Theo occasionally, and she hadn’t yet met Sam. We had a great time visiting with her—the boys and I took her on a stroll to downtown Clayton (where Theo of course had to stop for a cookie and very politely asked Briagha if she would like one too–I think his motives weren’t entirely pure, though, as he wanted to make sure we stopped there so he could get one, clever boy!). And Chris made his yummy tostadas for dinner. Mmmmm, that guy can cook! He is now making homemade salsa out of the tomatoes we get in our CSA box, and it’s soooo yummy!
Alas, on Saturday my head chef (a.k.a. Chris) was sick, so he stayed home while I took the boys to Theo’s soccer games. Theo wanted to go back to “Gavin’s soccer” again this week, so after his normal soccer class, we went to the soccer class that Gavin attends, and we had a picnic with Gavin and his parents afterward. The boys had a grand time playing, and then I took Sam home, dropped him with Chris (who had taken a three-hour nap while we were gone and was feeling semi-human again), and took Theo out to the movies. I’d been promising him we’d go see Monsters U., and it seemed like a good day for it, since Chris wasn’t feeling up to much. As it turns out, Gavin and his parents ended up being at the same theater as us! So the boys sat together as we watched the movie. They are so cute together—I really wish they’d be in the same kindergarten! Ah well, Courtney and I will make sure they get together now and then to keep up their friendship….
I thought Monsters U. was very cute, by the way, but I’m pretty sure Theo’s favorite part was riding the elevator to the bathroom in the middle of the movie. 😉 He just doesn’t really have the attention span to pay attention to a whole movie. But he likes to go, so it’s all good—every once in a while we take him, and he has fun even if he doesn’t pay a lot of attention to the movie itself.
Being the nice guy that he is, Chris passed his ailment on to Sam, in the form of pinkeye. Sigh… I could be wrong on the blame end of things, but the advice nurse at Kaiser asked me whether Sam was sick and said pinkeye is often secondary to a cold…so I blame Chris. And thus he gets to do all the pinkeye drops from here on out. I wish!! Alas, he’s only home for one dose a day, so I get to do the other three doses a day. Joy.
The only good thing I can say about Sam’s pinkeye is that this time we didn’t actually have to go into Kaiser—the advice nurse called in a prescription for antibiotic drops for us. Poor Sam, though—that kid seems to be perpetually in need of antibiotics for one thing or another! It’s so foreign to us, since Theo has always been so healthy. His recent UTI is the first time he’s ever had to take antibiotics. And then there’s Sam, who seems to be perpetually on them!
Speaking of Sam, you may have heard that scientists appear to have found a way to “shut down” the extra chromosome in individuals with Down syndrome. (If you haven’t heard about it, click here.) It’s the hot topic in the Down syndrome community this week (well, that and the fact that the Justice Department is doing an investigation into whether Ethan Saylor’s civil rights were violated when he died at the hands of three off-duty deputies—click here if you’re interested in that one). And I have to be honest: I’m not sure how I feel about this development. (The genetic findings, that is; I’m quite happy to hear about the Ethan Saylor probe. That case is disturbing on a number of levels.)
Why? This sounds like great news, right? I’m just not sure. I’ve been pondering it for days, and I’m honestly not sure I can put into words why I’m not jumping for joy about this development in the treatment of people with Down syndrome. In some ways, I think it’s great—there are certain troublesome medical issues that come with Down syndrome, and if shutting down that extra chromosome solves those issues, then excellent! But in other ways, it troubles me. Sam’s extra chromosome is present in every single cell in his body. Every last one! Even the tiniest skin cell carries a third copy of the 21st chromosome. There’s not one cell in his body that isn’t affected. So to shut down a part of every single cell in his body…well, that frightens me a bit. Would Sam still be Sam if every single cell in his body were changed? I’m not sure.
It feels a bit like tampering with what was meant to be, you know? As most of you probably know, neither Chris nor I practice organized religion. That said, we are both spiritual on a certain level (Chris probably a bit more so than me, but we both have our belief systems, and they happen to be relatively similar). And there is a psalm that says “I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well.” A number of people quoted that to me when I had Sam, and that psalm resonates with me in terms of the “wonderfully made” part. I believe in science; I believe in the science of reproduction and cell division and genetics and all that good stuff. But I also believe that somehow, somewhere a spiritual being has a hand in things. And so, when I look at Sam, in all of his extra-chromosome glory, I believe that he was created the way he was meant to be—he was, as the psalm says, “wonderfully made.” It’s probably the biggest reason why abortion would’ve never been a choice for us even if we had known about Sam’s Down syndrome when I was pregnant—because we both believe that Sam is the baby we were meant to have, just as Theo was the baby we were meant to have. It would’ve never been a matter of saying, “Oops, this baby isn’t what we intended. Let’s do away with him and start fresh with another.” We conceived Sam for a reason—he was the baby we were destined to have.
And so, when I think about shutting down his extra chromosome, it feels like tampering with our destiny. Arguing that what we were given wasn’t right. And I feel so strongly that he is right.
But that’s my heart talking. The logical side of my brain says, “If we were talking about a cure for cancer, and Sam (God forbid!) had cancer, you wouldn’t hesitate to obliterate the cancer cells. You would tamper with your destiny without a second thought!” And that is true. So I mulled over why that is—why am I delighted about scientific advances in one area and not so thrilled about them in another? And all I’ve been able to reconcile is that there is nothing redeeming about cancer. Or any number of other diseases and conditions. I don’t mind tampering with nature that way because there’s just nothing good about a disease like that.
But Down syndrome isn’t a disease. It’s simply a chromosomal anomaly—something different from the norm. And there are good things about Down syndrome. It not like cancer, which invades your body and eats away at it while you suffer. Rather, Down syndrome has its challenges but also its beauties. There’s a stereotype that people with Down syndrome are “always happy,” and that’s not true. They have ups and downs (no pun intended!) just like anyone else. But did you know that a large study of people with Down syndrome found that 99% of adults with Down syndrome report being happy with their lives? Further, 97% report that they like who they are, and 96% like how they look. This 2011 study was conducted by probably the leading name in the field of Down syndrome today—Brian Skotko, a geneticist at Children’s Hospital Boston. (Click here if you want to read the whole study.) The average age of respondents was 23 years old, and 284 persons with Down syndrome participated in the survey. So this isn’t parents of people with DS speaking for them—this is adults with DS answering honestly about their lives. And 97% of them report being happy! Now think about the general population: Would 97% of us report being happy? I sincerely doubt it. Most of us are guilty of focusing on the stresses in our lives, letting them get to us, and feeling that there are things we’d like to change in our lives. And that’s fine, I suppose, but I do think it’s pretty amazing that people with Down syndrome somehow seem to escape that “it’s never good enough” mentality and just enjoy their lives.
I suppose you could argue that perhaps they’re happy because they don’t have to contend with some of the stresses that typical people do, and that is probably true to some extent. However, people with Down syndrome have stresses that typical people don’t, so in the end perhaps it all evens out. We all have our stresses; how we handle them is what differentiates us. I tend to think that for whatever reason, that extra chromosome isn’t such a bad thing—people who have it seem to be able to maintain a pretty darn positive outlook. I personally think I could learn a lot from that.
I could go on for pages (and hours!) about silver linings to Down syndrome, but I won’t. You’ve read them before in my blog, so I won’t belabor it. But I think that is why I’m having trouble mustering a lot of excitement about this genetic breakthrough. I’m not so sure there’s anything wrong with Sam that needs fixing. I’m not sure I want to “turn off” part of him. It’s probably partly my mother-heart talking, but I think he’s pretty darn perfect just like he is. I have no problem with potential treatments to improve cognitive ability and such—don’t get me wrong. But something that essentially takes away a fundamental part of who he is? I’m just not sure I’m comfortable with that.
Anyway! Enough on the heavy topics. If I’m not careful, I’ll tread into “how my stance on abortion is evolving” territory, and I’ve been trying to avoid opening that potential can of worms on the blog. So for now, I’ll bid you adieu and tell you to enjoy this week’s gallery of images! I got some cute ones of the boys, and I posted some of my favorites from that wedding I shot last weekend, too. Please keep in mind that I was not shooting with a wedding-quality lens, so I did the best I could. 🙂
Wish me luck next week—Theo’s off preschool now, and I have to keep him occupied and quiet for two hours every day while Sam naps, which is quite a task!
P.S. Still playing with this new gallery plug-in. Click on an image to open it larger and cycle through the images on this page. There are, however, two pages of images–to get to the ones on the second page, you have to click the “2” button below to access the second page of thumbnails, and then click on a thumbnail to open it larger and scroll through the ones on that page.