Our son placed second in the township 4th and 5th grade spelling bee. We are very proud of him, the more so because I know how much work that is for him in particular, in terms of staying focused. We didn’t help him, either; he didn’t tell us about it, so we couldn’t help him practice. When I asked him why, he said he didn’t know he was supposed to. No one had told him to. It didn’t occur to his teacher that he needed to be told, and we didn’t know to ask. But courtesy of his wiring, he does have to be told, specifically, something that a neuro-typical kindergartener would do as matter of course.
It never ceases to amaze me just how pervasive the effects of autism are. I suppose it should not; it is the result of non-standard neurological “wiring”, with the degree and type of autism determined largely by in what fashion and to what extent the wiring is non-standard. Sometimes I want to tell friends who grumble about how difficult their children are at this or that stage to be grateful their kids are neurotypical, shut up and parent. I’ve never yet said it, but I’ve had the thought more than once.
Some things you can predict. Where language usage is not automatic, you’re going to have trouble if the kid is asked to understand or convey something outside of his usual experience. We nearly missed his school’s winter program our first year here, because while he knew it was taking place, and that his class had practiced all the songs, he had no awareness he was actually supposed to participate. General instructions to be in a certain place at a certain time did not penetrate as applying to him. We’ve learned to ask that the adults around him tell us exactly what he’s doing and what’s expected, because he himself can’t. Even with that, though, we can get into misunderstandings, so that at one point we thought he was conveniently not showing us his weekly progress reports and assumed it was because they were poor. We put the poor kid through a miserable weekend while we waited for his teacher to answer an e-mail. And then it turned out that what he’d been trying to explain to us was that he’d mislaid the folder she put the report in, she hadn’t given it to him to take home loose, and in fact he’d had perfect marks all week. He couldn’t explain it. He didn’t have the verbal facility to do so. I hadn’t realized it, but he’s still communicating by stringing together phrases he hears that apply. He does it very well, but when he gets into a situation where that doesn’t work, he’s at a loss. And if I don’t know what he’s trying to tell me, it’s hard for me to frame leading questions to help him. This misapprehension was relatively harmless, and we apologized to him for jumping to conclusions. In the end, I suppose it was as well we learned of the issue this way, rather than with something more important.
What I never in a million years expected was for one of the biggest frustrations to involve his clothes. Not fashion – he does have a clear sense of what he likes, and doesn’t care a whole lot to be in fashion. But he has problems with small-motor coordination. That doesn’t sound like a huge deal until you realize that past a certain size – 8 or 10, for the current styles – boys pants all have buttons and zippers. You can’t even find snaps instead of buttons, and elastic waists are on the endangered species list. But buttons drive him crazy, especially in the bathroom at school, where the other boys are watching and he is expected to be quick. I see no reason to put him through that frustration, but I can’t even find elastic waist pants online. There are enough important things that he has to work on; this is not one of them. Same with his shoes – past size 6 or 7, they all seem to tie. But laces are another exercise in frustration. I’m having a horrid time finding ways to accommodate him that don’t make him stand out even more. I want shoes that pull on or fasten with velcro, but they too are on the endangered species list.
So there we are. I thought it was bad enough growing up left-handed in a relentlessly right-handed world, but that was nothing compared to my son’s frustrations. He’s growing up uncoordinated in a world that values physical prowess. And indeed it is true that he is 10 and cannot tie his shoes or ride a bike. But he will be going on to the county spelling bee now. To me, that’s far more important than being able to manipulate a button. I can always make his pants. In fact, I have a washing machine full of denim and twill I’ll be putting to that purpose even as I write. And the shoes? I’ll keep on hunting. Someone has to be selling them.