Dar’s latest bruise is on my brain.
If you’re not a parent, or if your kid(s) is/are neuro-typical, you may not be familiar with the term “self-injurious behavior,” a term common enough in my community to be regularly acronym-ized. We’ll see forms that say “SIBs?” or “Amount of SIBs ____” or the like.
The SIB I saw this week left me scared…for Dar and for us.
I don’t know exactly what prompted it. No doubt our ABA therapist (who Dar sees at our house for three hours every day) asked him to do something that he didn’t want to do. No one has ever been educated without such prompting. Anyway, Dar freaked out and rolled around on the floor and walked around our house screaming bloody murder to the point where I was surprised no random stranger rang our doorbell out of concern for child welfare. (That HAS happened.)
As part of this Chernobyl-esque meltdown, Dar kept hitting, and hitting, and hitting, his own right thigh. Yes, sometimes we can physically stop that. If the therapist tries to get in the way, he’ll push/hit her, and as you might imagine that’s not acceptable. I can try to stop him. But I don’t love being hit either. It makes more long-term sense for Dar to learn to stop himself. So we sit there and use calming tones, soothing gestures. Imagine me almost whispering, “Dar, why would you want to hurt yourself?”
Why would he? How is pain soothing him? I know masochists exist, but all severely autistic people can’t be masochists. I keep thinking that maybe when you live in a world of fog, where nobody understands anything you say/want/feel, causing yourself pain probably punctures the fog for a little while?
These are the moments I really don’t relate well to my friends with verbal kids at any place on the spectrum. There’s no asking what’s wrong. There’s no warning of consequences. There’s no promise you or your child can make. Taking away something or giving something means almost nothing. And he will never, ever tell you or me what was bothering him. You will never know. In that sense, you’re also in the fog.
Last week I compared Dar to an animal. But the comparison was never meant to be, and isn’t, complete. Are there any animals that melt down for a half hour while hitting themselves? I don’t think so.
This week, after a half-hour of Dar off-and-on hitting his leg, during one of my minor physical interventions, I felt the affected part of Dar’s right leg. I touched his left leg for comparison. It felt cool. His right leg felt like it had a fever of 108.
Occasionally, I videotape these meltdowns. I have never posted one to this blog. One reason is that the blog seems to have technical difficulties with videos. Another reason is that it feels like a violation of Dar’s privacy. Your normal nine-year-old wouldn’t want you to post a video of his/her meltdown.
I didn’t videotape this one. But I wish I had, so as to protect us.
The next day, shortly after Dar’s arrival at school, my wife and I received a group text from Dar’s supervisor at his school, “Darwin arrived with a big bruise on his leg” With this photo.
The supervisor may not have meant it as any kind of accusation. Perhaps she is required to report such things. Even if she was accusing, it’s not clear she was accusing us. I mean, for all she knows, the driver hit Dar. (Dar’s IEP includes transport; he gets rides to and from school every day.)
Still, her text dropped a pit into my stomach.
I was on my way to work, but I pulled my car off of Highway 80 to call her. She answered. I asked which leg and where? After all, there might have been a mark we didn’t know about. Dar could have banged his leg into our coffee table at home. To our shame, we hadn’t really looked carefully at Dar’s body before he left for school that day. We can dress him (I did, that day) without really thinking about what his skin looks like. See what gets normalized?
To my surprise, the supervisor didn’t seem all that worried. In fact, she was trying to get me off the phone to get herself into another meeting. She didn’t know which leg it was; someone else had reported it to her. She wanted to hang up and find out. I said okay. She texted me confirmation that it was of Dar’s right thigh.
I texted back, “He really hurt himself there yesterday. His ABA therapist can confirm”
She texted, “Thanks for info”
Do kids still get physically bullied at school? No, not mentally. Physically. I suspect it happens a LOT less than it did with my generation. I mean, kids in my generation could come home with, and go to school with, all kinds of random bruises and marks, and I don’t know how often anyone said anything. Not often enough.
Dar’s brother is certainly part of a new coddled generation, but it’s almost like Dar is in my generation with the bruises and marks.
I know every parent lives with fears. You absolutely never know. School shootings and even more random threats to life and liberty. Sure.
But then, add to that a few more swords of Damocles to hang over your head. One of them is the possibility that your kid, out of his unfathomable frustration, will hit his caregivers too many times. What’s too many times? Don’t ask. What happens to him after? You don’t want to know.
Another sword of Damocles is that somehow you will be blamed for your kid’s SIBs. Why do you think I write posts like this? It’s partly to protect my wife and I. Dar has a long history of SIBs…but still. In a worst-case scenario, the state takes custody of Dar and his brother away. I would rather cut off my own legs. But…that sword is there, just hangin’.
And if and when any of that happens, I’ll never really know why. I’ll shrug and say “autism.” But will that really explain anything? Does it now?
Dar’s latest bruise is on my brain. I don’t think it’ll ever quite be gone.