Wonderboy is a bit of an enigma. So far I have counted six specialists who’ve used some version of the phrase, "We’ve never seen another kid quite like him." Neurosurgeon, surgeon, neurologist, physical therapist, developmental pediatrician, and general practitioner. Possibly two general practitioners. We have come to accept that there is no name or label for what sets our boy apart, no previously mapped-out territory. He is truly, completely, uniquely one of a kind.
His physical abnormalities—and that is not a word that bothers me; "normal" refers simply to qualities shared by the majority of people, and there can be no denying that there are many things about Wonderboy that are NOT like most people—his abnormalities are not genetic. His chromosomes, the geneticists tell us, are normal. No extras, none missing, not even any little pieces of a chromosome missing: the big fancy tests they ran confirmed this.
No, in his case, it seems something went slightly awry during the first few weeks he was developing in utero. All of his physical abnormalities are what’s called "midline issues." Run a line down the middle of his body and you’re pointing at the places where he isn’t put together like your average Joe. Skull, brain, inner ear, heart, abdomen, tail. Um, yes, tail. He was born with an unusually long and protruding tailbone. It stuck out beyond the end of his bottom a little, a hard little bump that made it painful for him to sit on hard surfaces. Last summer it had to be surgically removed to prevent the skin over the coccyx from breaking down and getting infected. It took us months to get used to not seeing it when we changed his diaper. But he can sit comfortably now, and that’s a great thing.
He has very high muscle tone, a neurological issue that made it hard for him to stretch out his arms and legs to their full range when he was a baby. He started physical therapy at five months of age, and after hours and hours of stretching and exercising and basically sort of kneading him like Silly Putty (um, really stiff inelastic Silly Putty that doesn’t have any of the pliable properties that pretty much defines Silly Putty, so that’s a stupid simile to have chosen, but there you go), he has gradually gained the flexibility necessary for things like walking. He walks! Really really well! Time was, we weren’t sure that was a given. Now here he is two and a half, trying to run.
But. One of the most "we’ve never seen anything like this" things about Wonderboy is that he has these bizarre gaps in his development. I guess he didn’t get his copy of "What to Expect the First Two Years" in the womb so he doesn’t know in what order things are supposed to happen. Case in point: he’s been walking for over a year, but he couldn’t stand up until last month. If he was lying down, he couldn’t get up into a sit, a crawl, or a stand. Sitting? Couldn’t get onto his feet. Or hands and knees. Could only just sit there.
You could pick him up and set him on his feet and he’d take off like a little wind-up toy. But if he was just lying on the bed or the floor, he was stuck there. And for a kid who can’t hear well, who relies on visual contact for communication and happiness, being stuck was scary. So he never sat down. All day long. Except when one of us would get on the floor with him to play or do PT, he just trucked around on those knobby little legs of his.
And then, last month, the miracle happened. He—just—did—it. All the months of physical therapy paid off, all the hours we’ve spent, the big sprawling bunch of us, taking turns having floor time with him, making up games that stretched his tight muscles and worked some strength into those bony little arms.
This unbelievable victory occurred about three days after a PT session. We couldn’t wait to show his physical therapist, the wonderful Molly. But it happened that for one reason and another, it was over a month before we had another session with Molly. By then Wonderboy had spent hours practicing his new skill with immense delight and to much applause from admiring sisters. He spent a couple of weeks with his forehead carpet-burned from using it to balance as he maneuvered himself to his feet. Let me tell you, this getting-up business is HARD WORK. I bet you take it for granted. I know I did. Watching Wonderboy struggle, I have realized it requires an astonishing amount of muscular finesse and strength. Now I feel like a powerhouse every time I stand up from my chair. Did you see that! Dozens of muscles working in sophisticated interplay, and I didn’t even break a sweat!
So by the time Molly got here last week, Wonderboy was primed. Scott put him on his belly on the floor, and the boy GOT RIGHT UP. Okay, it still takes him about thirty seconds and some forehead-scraping. But he can do it. Every time. Molly was blown away.
And then she blew us away, because after watching the boy demonstrate his fabulous new skill some fifteen or twenty times, she announced that Her Work Here Was Finished. For now, at least. To our surprise and joy, Wonderboy has graduated from physical therapy. You may commence the trumpet fanfare because this is HUGE news.
He may need PT again someday to help develop other motor skills. But for now—and with this boy, NOW is where we are, day by day, moment by gorgeous, miraculous moment—for now he doesn’t need the extra help.
And that is a really big deal.
Jane caught him on tape this morning, getting up onto his feet. It’s our little thirty second tribute to the marvels of Early Intervention, and our big giant thank you to Molly.
Click to watch the video. (Sorry, folks, I didn’t realize it was auto-loading for some of you! Thanks for the heads-up, Daryl.)
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The IEP Story