B and I met when our sons were in second grade. The boys played baseball together, and later, basketball. Over the past few years, we’ve spent hours socializing on various bleachers, at ball fields and in gyms all over the city.
B has a son Charlie’s age and an older son in high school. One night, a couple of seasons into our sideline friendship, we were talking about school and sports and our boys, and she mentioned, in a quiet voice, that her older son had Asperger’s Syndrome.
And I blurted out, “So does Henry!”
B’s son has many of the same issues Henry does — the social awkwardness and the anxiety and inability to face consequences. He’s also a really nice boy, the kind of kid I hope Henry is in a few years, polite and funny and kind. But I know from talking with my friend that it’s been a rough road getting him where he is today.
This summer, B and I found ourselves back in the bleachers, at a summer league basketball tournament. While we waited for our game to start (which included sitting through the overtime of the game before us) we caught up. I asked how her son was doing, how high school was going, how he was adjusting. “It’s been rough,” she said. We talked about the days that our boys refuse to get out of bed, the panic attacks about homework and schedule changes, the struggle to make friends and find a place.
And then we talked about how things were going at home.
I told B that I have to constantly remind myself that Henry is not trying to make me crazy, that he’s not acting out, that he’s struggling to keep up. I told her how I am constantly edgy and constantly exhausted. I told her how I feel like I never get a break.
She nodded. And then she said something that changed the way I think about Henry. “If he walked with a limp or used a wheelchair, it would be easy to remember that he has a disability,” she said. We expect them to be able to do more than they can, she said, because we forget how hard everything is for them. Because her son — and mine — don’t look disabled, it’s easy to forget that they are.
I rolled this around in my head for a long time that afternoon. My friend was right; Henry looks pretty much like any other kid his age — just maybe a little nerdier. He has acne, but we’re treating that; he wears glasses, but only on the weekend (contact lenses FTW). He buttons his polo shirts all the way up, but thanks to Kevin Durant, that’s a look these days. From the outside, he’s your average middle school kid.
Of course, he doesn’t act like your average middle school kid — or function like one. But there’s no way to know that Henry’s behavior is a manifestation of his disability, not just from looking at him. He doesn’t have a limp or a wheelchair. He just has poor social skills and a propensity to talk too much and a refusal to do anything that is even remotely outside his comfort zone.
On the days when Henry is struggling the most, I remember what my friend said. I know, I have always known, that I will need to explain his limitations to teachers and coaches — but I forget, sometimes, to take those same limitations into account in my own interactions with him. I get frustrated and impatient; I lose my temper. This week, after struggling to get Henry through a particularly rough night of homework, I yelled at Henry. And then I yelled at my husband. Because why does he have to act like that???
It’s hard for me to understand how Henry experiences the world. I do my best to remember that he’s a good kid, that he’s smart, that he’s funny and fun to be with. But it’s hard when he’s really struggling because his struggles can look so much like plain old obstreperous teenage behavior. In those moments, I find myself needing to take a step back, literally, and remind myself that while he doesn’t walk with a limp, he is not keeping pace with the rest of the world. He has a disability and it slows him down.
How do you talk to yourself about your child’s special needs?