It’s Alex’s 12th birthday, so let’s catch up with the not-so-little guy. Sometimes I regret not keeping the “family blog” thing going. You’d think if I was concerned for the privacy of my kids — which was ostensibly the reason that I stopped — I could at least have kept a private journal or something. But, no. If my writing isn’t going to be read, then it also isn’t going to be written.
Still, I do hope to revive Lea’s homeschool blog when that gets going again in a few weeks. So I think an Alex report is well overdue.
If you’re just joining us: Alex has Fragile X syndrome, a chromosomal disorder that packs quite a wallop. He has a severe learning disability, and it’s hard to imagine to what degree he will be a functional adult. He can read short sentences, and he is good at learning routines and schedules, and it’s kind of startling how he understands basic technology: We got a new DVD player last month, and he took the remote and got his movie playing, with subtitles (as he prefers), without my needing to show him anything. I’m still not sure how that happened.
Once upon a time I worked with him daily on reading and counting coins, but I don’t do that nearly enough these days. When he comes home from school (which runs more-or-less all year round), he is not anxious to sit back down and do further work with me: It takes a mighty reward just to get him to do his homework, which generally consists of copying a few words, or drawing a line from a sentence to a picture illustrating that sentence (“The fish is wearing a hat.”), or adding things up with a calculator and writing in the answers.
He gets more enjoyment out of practical work: When I take him shopping with me, it’s his job to find all the food. If he’s in a good mood, he’ll thrust his arms into air with each item added to the shopping cart, with a hearty, “Yes! I did it!” And if he’s in a bad mood, he’ll run away from me as fast as he can or throw himself on the floor.
Alex is still very much into cars and trains, and also rolling suitcases. The people at the local Sears have grown used to the kid who comes there several times a week, skipping happily ahead of his dad, to look at suitcases and ride the elevator a few times. If Alex isn’t in the mood for Sears, we’ll go to McDonald’s for some fries and so he can play in the indoor playground — or, rather, stand there, watching the others play. Or maybe we’ll go to Eisenhower Park, near our house, which has a very nice playground designed with special-needs kids in mind. That’s where the picture above was taken a few weeks ago.
We are constantly tweaking his medication, using the “educated guess” system. He had a miserable day in school last Friday, even going so far as to hit another student. We thought maybe his meds weren’t kicking in soon enough, and started giving them to him earlier — indeed, while he is still in bed. Slap the Daytrana patch on him, give him his pills, and he can go back to sleep for another hour or so. The e-mail yesterday that Alex had an awesome day came as a huge relief. It’s alarming, the degree to which my wife and I are making this up as we go along, but at least we sometimes get it right, if only temporarily.
Still on the horizon are the drugs that are supposed to change everything. They’ve essentially cured the symptoms of Fragile X in mice at this point. Testing on humans continues at a maddeningly glacial pace. A few weeks ago it was announced that the major drug company Roche was allying itself with the main company behind these new drugs, which should help autistic kids as well as Fragile X kids. (I suspect that autism is the big jackpot for these folks, with less-common Fragile X a side beneficiary.)
We try not to think about these drugs and what they might one day mean for Alex. We also try not to be overly concerned about what Alex’s adult life is going to be like — a life that is rushing towards us at something close to the speed of sound. My wife has prepared some of the groundwork, looking into group homes run by the state, and this year we finally set up the funding for a special-needs trust. (Although the trust itself does not yet exist. I should probably do that.) I can easily see Alex hanging on with us indefinitely, plopped on the sofa, watching Pixar movies on TV or videos of trains and garbage trucks on YouTube, on his iPad. I also know that “indefinitely” is not the same thing as “forever,” and that we need to eventually figure out a real gameplan here.
Today, though, I think the main focus is going to be on cupcakes with candles in them. He can’t really blow them out, but I’ll help.
Does Alex handle birthdays/candles/singing okay? Apparently it’s quite common that folks with Fragile X can’t stand birthdays and all the attendant rituals. My brothers would both rather skip it, even at ages 47 and 42.
Alex is perfectly fine with all of that. He does not like talking on the phone, though, so there were no “happy birthdays” from outside out immediate house.
That is an absolutely fabulous photo. It looks like something you’d see in a promotional piece.
Sometimes I get lucky. The trick is, you can’t tell him to “smile,” because then he makes this big goofball face. He just has to be in a good mood.
Nice update. AMAZING shot.