Patterns

My son has autism. It’s not something I talk about very much. Not because I’m ashamed of him or because I want to pretend everything is okay. It’s just kind of an awkward topic. How do you even bring something like that up with another person? “So, how are you?” “Oh I’m fine. How are you?” “I’m okay. By the way, my son has autism.” I’ve just never known quite how to broach the subject in conversations. I feel bad when I think about people I know who don’t realize that he has autism, like I’m trying to hide it from them or something.

I guess I’m just concerned about getting sympathy from people about it. As in, “So, my son has autism.” “Oh I’m so sorry for you!” Well, it’s not really something to be sorry about. My son isn’t “defective”. There’s nothing “wrong” with him. Yes, he is different from “normal” kids. But he’s not “retarded” or “inferior” or anything like that. I don’t need people offering their sympathy, like my son has some terminal illness or something. So I just keep my mouth shut about it.

Obviously, having autism means there are some things he can’t do or doesn’t do well. He doesn’t talk much, and when he does talk, it’s not in a way that follows “normal” rules. For example, if he says “Want some food?” it means that he wants some food. He doesn’t recognize that as a question, he just knows that’s what his mother and I say to him when we’re trying to figure out if he’s hungry.

On the other hand, there are some things he does very well. He’s only 4 years old, but he can count to 100, he knows the entire alphabet, and he can spell several words, such as “rain” and “school bus”. Because of this, I don’t feel like there’s anything “wrong” with him. His brain isn’t defective, it’s just wired differently than that of a “normal” person. He has different strengths and weaknesses than most people.

My original intention with this essay was to talk about what it’s like to be the parent of a child with autism. I’m finding that it’s a difficult topic to write about though, because I don’t know what it’s like to be the parent of a child that doesn’t have autism. I do have two children, but my daughter is only 6 months old, so it’s too early to tell if she has autism or not. Besides, nobody really knows yet what causes autism. Are kids born with it? Or is there some environmental cause? If it’s the latter, it could well be that she doesn’t have autism now, but she might have it later. Or maybe she’ll never be exposed to whatever it was that caused my son to have it. In any case, all I can do is put this in God’s hands and trust that his will is going to be done.

That said, I do know other people who have “typically developing” children, so I do have a bit of an idea of what it’s like to raise such children. One thing that’s frustrating is that it’s hard to tell if a difficult phase is due to him having autism or just due to the age he’s at. Right now, he’s going through a phase where he cries and screams if anything is even slightly different from what he expects. For example, he will sometimes scream at me if I take two bites of my morning bagel in a row, instead of taking a bite of bagel and then a drink of coffee. Clearly part of that is autism, since one aspect of autism is that an autistic person has certain patterns that they feel need to be followed, and for whatever reason, one of my son’s patterns is that I have to eat my breakfast in a certain way. But part of it could also be the fact that he feels more strongly about his preferences right now, because he’s a cranky four year old. Either way, it’s annoying.

Another difficulty is that it can be difficult to communicate effectively with him. Sometimes he’ll ask me for a drink, and I intend to give him one, but I can’t do it right that second. So I’ll say “Just a second, bud!” Well, to him, the fact that I didn’t say “Let’s go get a drink” and head straight into the kitchen to get him a drink means that I’m not going to get him a drink at all. So he screams and cries, and I vainly try to explain to him that I AM going to get him a drink, it just is going to take a few minutes. Again, this is annoying.

But so far I’ve made it sound like there’s nothing positive about my relationship with my son, and that’s certainly not the impression that I want to give. Whenever my son says “Snuggle with Daddy?” and cuddles up next to me, it makes (most) of the frustrations melt right away. When I see my son unexpectedly do something that I never would have thought he could or would do, it makes all the hardships worthwhile.

For example, we’ve been trying to transition him from drinking out of a sippy cup to drinking out of a “big boy” cup. Our first step is to make him sit at the table when he has a drink. In addition to this, we’ve removed the stoppers from his sippy cups, so that he’s more used to a faster flow. The first time I did this, he wasn’t used to it, so some of the juice spilled on him. He came over to me and said “Towel?” Now, I know from prior experience that this meant he wanted a paper towel. (He used to ask for them so he could ball them up and throw them in the garbage.) So I gave him one, and he went over to his chair and cleaned up his mess with it, and then went to the garbage can and threw it away. That blew me away. How many typically-developing four year olds clean up their own messes unprompted?

I never expected to have a child with special needs. I was always kind of creeped out by them when I was a kid myself. I couldn’t imagine that I would ever end up with one myself. But I wouldn’t change my son for the world. He is his own person, and he is my son, and I love him.

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3 thoughts on “Patterns

  1. You did a wonderful job describing Benny and your relationship with him. He is a real gem, and I love him as well. He’s "Mammie’s" good boy.

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