In which I say I'm sorry

Yesterday I was chatting with a mom at CMS, about mono of all things. She seemed really nice. Our children came up to the office at the same time, and we all left the building together. This mother, in the way of mothers, advised my son that he should tie his shoes before he tripped. He didn’t answer her, and I realized that my response must have seemed a bit strange, and probably rude. I don’t know who she is, and I don’t even know if she is a member of this group, but I’d like to offer an explanation, just in case.

Most simply put, I don’t care that my son’s shoes are untied. I’m happy that he got shoes on at all on any given day, and the added bonus of socks makes me ecstatic. He is not trying to make a statement. He doesn’t think he’s too cool to tie his shoes. He simply lacks the manual dexterity to tie them well enough to stay tied longer than about a minute. We have, in fact, tried the bungee ties that you mentioned. He says they are too tight. It’s a sensory thing. It does not matter that you can loosen them; he has decided that they are too tight. We like velcro, but his feet are huge, and he has to wear orthotics, so we deal with what we can find.

You didn’t mention it, but I am also aware that he looks like he got dressed out of a rag bag. That’s not a statement either. In moments of high anxiety he picks at his clothes and he picks them full of holes. We’re working on it, but we live with holes because we’re just happy that he stopped eating, literally, his shirts, and that he no longer picks at his skin until blood runs down his legs. And no, he probably hasn’t combed his hair in week. We’re just happy that he lets us touch him.

You are not the first well meaning person to point out his shoe laces. There are even more, less well meaning people, who say downright nasty things about him when we walk by. Luckily, most people are just part of the scenery to him, so he usually doesn’t hear them. I do though. I do, and every time it comes up the little voice in the center of my chest says, “here we go again,” and I suddenly feel physically exhausted. I have to decide, one more time, how to respond. What is going to make this go away? Sometimes I try the smile and nod, but there are people who are not content with that. Sometimes, I try the off handed remark about teenage boys.

But what I don’t want to do, is stand in a parking lot, and explain one more time that what you’re looking at may be all I can ever expect. I don’t want to have to tell you that my life is just about worrying about different things than you do. That as handsome, and kind, and smart as my son, my first born, is he will probably never leave home. I don’t feel like explaining that I know he just ignored you, but to him you might as well be a tree. I don’t want to tell you that he talked about killing himself for the first time when he was seven, or that kids throw trash in his lunch on purpose because his OCD won’t let him eat anything that someone else has touched. I don’t want to tell you that he doesn’t sleep at night and he walks endless circles around the coffee table. I don’t want to tell you that more than one doctor thinks that eventually we will have to institutionalize him, because there are more things, things that we don’t even tell the people who love him the most. I don’t want to have to explain one more time, that yes, he does speak very normally, and he looks like a normal kid, but not all autism looks the same. I don’t want to have to say, “I don’t give a shit that his shoes aren’t tied, you have no fucking idea about the real problems we are dealing with here!” and so lots of times, I just say nothing, and I walk away.

But you didn’t know that, and I was rude to you, and there is no excuse for rudeness. I feel badly, and I wish I knew who you were so that I could tell you that I know, and I’m sorry. I am sorry if I made you feel small, or put down, no one should be made to feel that way, and I saw on your face as you walked away that I did that to you.