Simon came home from school happy about school, which is his normal status about school.
School is an amazing place, or at least he thinks that while he’s at home. (While he’s at school, it’s often a different matter and he can get mad at things not happening on schedule or teachers not being there.)
But today, it was happiness.
From the moment he got off the bus, he said school was fun.
I asked what he did at school. “Fun,” he said.
I asked again, emphasis on “what” he did…
“What did you learn about?”
Okay, maybe that’s actually a “where” response, but close enough that I’ll take it.
These feelings about school didn’t fade away. He ran through his usual “script” about going to school and when he goes back to school (tomorrow morning).
But that wasn’t enough today. He kept repeating himself and wanting me to repeat it back to him.
So I came up with a social story on the fly and told it to him.
“In the morning, you wake up, then you get dressed, then you eat breakfast, then you get on the bus, and then you get to school.” I held up a finger for each step, numbering them one through five.
He nodded along, so I went for the repetition.
“What do you do first?” [One finger held up]
“Then what?” [Two fingers held up]
“And then?” [Three fingers held up]
“And next?” [Four fingers held up]
“Take the bus.”
“And what’s the last step?” [All five fingers held up]
“Get to school.”
“Do you feel better now?”
“Great, so can you please get out of the bathroom? Because I kind of need some privacy now.”
And other thoughts on someone else’s blog…
Abandoning Pretense wrote an awesome blog about what happens when her son got put on ADHD meds and how much the drugs helped him function.
Her statement is that she likes him better when he’s on the drugs, and she likes herself better when he’s on them because she’s in a better mood and able to deal with things better.
I get that.
But I wouldn’t say I “like” Simon better when he’s drugged.
I would say, though, that he’s happier when he’s drugged, and that makes me happier.
Like the blogger there, we also tried to avoid giving Simon drugs when he was younger. We fought it for years. He didn’t need them, we told ourselves. He’d be okay without them. Drugs are unnecessary. Drugs are a crutch.
But they aren’t.
They’re necessary. Sometimes.
I’m not saying that medication is the answer. But it is an answer, and in some cases, it’s the best answer. It’s like when you can pick “E” for all of the above.
We gave Simon everything we could, and it wasn’t enough. He still had melt-downs that he couldn’t control. He had anxiety that he couldn’t control. He got violent.
We started him on medication.
And things got better.
He was more relaxed. He seemed to feel better. He seemed to be able to enjoy himself more.
And, yeah, that made things better for us, but mostly for him. It’s not fair to withhold the medication from him, saying that he doesn’t “need” it.
We tried to stop it at one point, to pull it back, to reduce the amount of medication he took.
The difference was immediate. He went from having fun to needing constant redirection and constant reassurance. Anything that went off schedule was melt-down city.
We brought the levels back up, and he became himself again.
Yup, that’s what I said – he became himself. Because without the drugs, he couldn’t be himself. He had to be what his brain told him to be. His brain messed with him, made him anxious, made him upset. The drugs allowed him to get back to where he had been before. Where he could feel good, where he could feel “normal.”
So, no, I don’t like him better on drugs.
But I’m glad he’s on them.
Let me start by saying that I love John Scalzi. Really. I do. I swear. If I didn’t, I wouldn’t have gone to his signing/reading up in Houston when “Lock In” came out. I was totally enthralled by his reading of the part of the “book” that wound up not being in the book.
Then I read “Lock In.” Well, I tried to read it, anyway.
I stopped about 100 pages in. Because, regardless of his intent, what I got from it was autism and Asperger’s.
The threep suit that the main character (male or female – you take your pick, but I’m using “he” for short-hand in this blog posting) wore made him seem like he had Asperger’s.
The sensory stuff that he dealt with, the super-memory, being locked in his own head…like kids with autism who can’t communicate.
I was okay with it, and I kept reading because I kept thinking maybe I was reading too much into it. Maybe I was the one who just put autism into everything because I think about it so often.
Then it was time for the scene at the dinner table of the fund-raiser of the main character’s father. And there was an argument because many people at the table felt that the locked in people should try to be more “human” (even in their threeps), while others argued that it was the individual’s right to choose how they interacted with the world.
And I had to stop.
There is such an argument right now about how much people should accept. Should people on the spectrum be forced to be “normal”? So many people force their children to go through ABA and learn to behave like all the neurotypical people. No stimming (which, as you can read about, is often extremely detrimental to stop for many people on the spectrum).
I also remember, from oh so many years ago, an article that I believe was in the New York Times about a woman who was happy with her son, she kept saying that in the piece, but then when he was 8, he wanted to be Mickey Mouse for Halloween. And, clearly, that was unacceptable, and so she had to “fix” him to get him to be more like his peers. I wanted to slap her for forcing him into a role he didn’t want to be in. Why should he change – just to make her happy? To make society happy? The kid was happy. What difference did it make if he loved Mickey? There are plenty of adults who do, too!
It goes further than that, of course. I could write about this for pages and pages.
But I’ll just stop with this: imagine being truly locked in. Imagine not being able to communicate your wants and needs. And imagine that, like in the book, the government cut funding to things that would help you to communicate.
And now you know why I couldn’t keep reading. The reality is there. The thought of the insurance not covering things that might help Simon is a reality I don’t want to consider, even though I know that’s probably where the world is going.
But rather than end with that achingly painful thought, let’s think about something else. What if we looked at the behaviors of autism differently? What if we considered the good and the bad, and we helped those on the spectrum be happy instead of making us happy?