22 bandages

posted by Jeff | Friday, February 16, 2018, 10:39 PM | comments: 0

Tonight I helped Simon take off 22 bandages before taking a shower. As horrible as it sounds, it was 25 last time, so this is an improvement. The bandages cover the places on his skin that he picked until it bled, mostly on his forearms and lower legs.

I've been thinking about whether or not I would write about this for some time. I used to write about his autism spectrum disorder diagnosis quite a bit. There was something that seemed obvious about the path for that, even though ASD can encompass so many things and every kid can be wildly different. In Simon's case, it was clearly an issue with inflexible thinking, but socially he was still a loving kid and he didn't seem to be cognitively impaired. Even now, I don't feel like he isn't smart enough, but a double knot or shoe laces that won't stay tied are a show stopper, and seeing a word problem in school preempts him from attempting to solve it (I think this is because he sees it with pre-ADHD med eyes, not because of the ADHD).

But the ADHD challenge, and some of the things that may or may not be associated with it, are different, and harder to talk about. Still, I want to write about it and capture how I'm feeling at the moment, so I can refer back to it, but also because I know that parents have a way of finding this sort of thing and taking comfort in knowing they're not alone. So here we are.

I hate that we're medicating the kid without therapy, but we have little choice. There are no qualified therapists even remotely near us, and they're not covered by insurance. The pediatric psychiatrist that we do see is on the other side of town, collects a $50 co-pay each visit, and there are at best two or three people who do what she does in greater Orlando. That's frustrating because I'm not at all satisfied with her results, but we don't have a lot of choices. The school concentration drug prescription took some experimentation, but we have something that sort of works now (after a $300 DNA test explained what works and won't).

His concentration in school is better, but again, there are certain things he won't even attempt. We see this at home with the simplest things, but sometimes that might be because we've offered him shortcuts or accommodations. I don't think that's what's going on for school work, because if he knows he'll be penalized for incomplete work, the reaction is intense and emotional and crushing on his self esteem. It's not the reaction I would expect if he simply wasn't interested (something I was intimately familiar with in school).

In addition to the amphetamine he takes on school days, he's also on a med for anxiety (which was something initially prescribed so he could participate in therapy), and another one that kind of amplifies the amphetamine effects and might have reduced the picking. He's picked his fingers for a long time, the pads, not the cuticles, but at some point it started on his arms and legs. This is the most upsetting thing. I can roll with academic challenges and social contracts his ASD brain can't reconcile, but this is something completely different. We have him wearing long sleeves and pants at all times now, as well as some long tube socks so he can't get to his legs. Sometimes we have him wear gloves. This is only going to work so well in Florida, where it will be 90 degrees every day again soon.

His teachers the last two years are nothing short of saints for doing their best to help him. We've been pretty lucky for two years in a row. They've given insight to his social scene, too, which isn't ideal, because kids can be real dicks. He's kind of the "weird kid" at times, and being covered in bandages isn't going to make that easier.

Also, as an aside, the support of kids who have any kind of psychological challenge in public schools is completely inadequate. You could add a school psychologist to literally every public school in American for the price of 7 stealth bombers that the joint chiefs say they don't need, but you know, no one will touch that sacred cow.

I'm not looking for sympathy or attention with this, I just need to vent. Tonight, after peeling off all of those band-aids, I watched him in the shower and kept him on-task, making sure he didn't pick. I dried him off and immediately followed him to get his pajamas on (long sleeves/pants). I monitored his teeth brushing, then trimmed his finger nails and put a few new bandages on his worst fingers. I used Band-Aid® antiseptic stuff on all of his wounds, which will hopefully get a little breathing overnight. Then I laid down next to him until he fell asleep to make sure he didn't hurt himself anymore tonight.


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