Sunday, April 7, 2019


I tried taking Stow to karate today, but when we walked in, the class before his had more people than usual, and they were doing something he didn't expect them to be doing. This triggered his anxiety, but I didn’t realize it until he started to freak out because he couldn’t quite get his belt tied right.

“Let me help you,” I said.

“No!” he replied, angry that I would embarrass him by offering. After refusing my help three times, he thrust his hands into the pockets of my jacket and pushed me to the wall.

“I don’t want to do karate today,” he whispered. I bent down to ask him why, and he grabbed my head and pulled me close. “We have to go now,” he said, his nose nearly touching mine, panic in his eyes.

“We came all this way, and it will be your turn soon,” I said, trying to calm him some. With his hands still in my pockets, he pulled away hard and then jabbed them into my chest.

“Now!” he growled, trying not to raise his voice or burst into tears. “Or, I’m going to run away.”

I didn’t want to leave. We’d driven 30 minutes to get there, and I’d already paid for the lesson. Plus, the instructor expected him to be there. But, the thing is my calculus about how to handle moments like this ALWAYS takes into account what other people will think and/or how he SHOULD act. When he is melting down or doing or saying something “inappropriate,” I am always simultaneously trying to figure out how to help him without somehow inconveniencing other people.

Stow losing his shit because a bunch of kids are doing things he wasn’t expecting shouldn’t be traumatic for me, but it is. Part of the reason, of course, is because it breaks my heart every time his disability gets in the way of him doing things he would probably enjoy. But this article helped me realize (in a way I hadn’t before) that maybe the bigger reason I find all of this SO hard is because every time it happens I realize that we spend so much time and energy trying to get him to behave in a way that’s acceptable, when really we should be focusing on how his behavior expresses exactly what he needs.

I wonder what would happen if we lived in a world that was calibrated to a wider range of behaviors and needs? I know for me, at least, it would mean that I would no longer be trapped in an impossible conundrum that somehow requires me to meet the needs of my child while also making sure he functions appropriately in a world that isn’t terribly hospitable to him.

1 comment:

csojc said...

This is something I am coming to realise and actually having to fight with my psychiatrist, as he's stuck on us "spending more time with people without asd", because he seems to think it will help us act more like people without asd?? This guy has been treating me for depression and anxiety for 15 years, refused to consider ASD/Aspergers as a dx for me 5+ years ago, and seems to be resisting it now (my son's psych gave me the ASD dx). I didn't care so much before, but with him telling me this about my son now I'm pretty sure I'm going to have to find a new psych.
The thing is the world is full of "quirky" people. The ones who are successful and happy in life are the ones who make life work for them, instead of trying to fit into a life they will never be ok with. I don't care if my kid is forever odd. I do care that he's happy, that he finds a way to manage his anxiety so he can function, and that he's not paralysed by it like I've been for so long.