Sunday, April 7, 2019

Calibrating

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.

Thursday, March 7, 2019

Success?

Here's a post I shared with some friends this weekend:



Sometimes this is what success looks like. He’s supposed to be playing a basketball game right now. We were there on time and tried to get him to play, but even before we got into the building, he seemed off.

When we got into the crowded hallway, he fled to a dark, isolated corner and told me he couldn’t do it today because he was “freaking out.” Indeed, he was clearly on the verge of losing it.

We tried for awhile to get him to stay and watch from the bench, tried to talk him through what was bugging (too many new things he said, including a scraped knee and the fact Sky was gone). He said he couldn’t get it back together and that he needed to go. We went together to tell the coach he was going and then we sat with him in the car in the parking lot for a bit. We told him how much we loved watching him play. He struggled to keep it together and begged us to drive him home. So, we did. And then we sat with him in the car in the garage for a little longer.

He got out and opened my door and hugged me. By this time I had tears in my eyes because it’s not easy to know what to do and watching your kid fall apart is hard. He said, “When I’m freaking out, my tummy is purple because I feel sick and my head, arms, and legs are red like fire.” Then he pointed to his heart and said, “And, this is blue because it feels calm but also really sad.” On the way into the house, he said, “I’m sorry you couldn’t see me play. I’m freaking out and it isn’t safety for other people and it isn't safety or for me.”

So, this is what success looks like sometimes. He knew he’d hit his limit, he was able to tell us and insist when we tried pushing. Not only that, but he could describe what his body felt like and understood he needed to do something different in order to stay safe.

I’m sad I didn’t get to watch second-grade basketball because it’s a total hoot, but I’m so glad that for this moment on this day he was able to tell us what he needed and get it
.

*****

Friends responded to the post telling me how well we handled it and how proud they were of Stow. But, in the moment, it felt like Ren and I were doing everything wrong. Autism parenting feels like that a lot. The things we thought we knew, the things we thought would work, the things that we thought we could do--all of it--turns out not to be quite right. 

Stow is a conundrum wrapped in a mystery tied up in creativity and unpredictability. He has these moments--moments where he can so clearly articulate what is going on in his head, moments where he can advocate for himself BEFORE the meltdown happens. When conditions are right, Stow can demonstrate some top-notch reasoning and self preservation skills well beyond the capabilities of his brother at the same age. But, he also has a whole lot of other moments when his brain short circuits and the only thing that makes sense to him is to fight or flee. Nothing teaches you your limits as a parent quite like having a kid who toggles unexpectedly between these two extremes.

I know I haven't been writing as much these days. The short explanation is that writing blog posts used to help me figure out where we've been and where we're going. It used to be that I could see the storyline and understand its general arc. But, that's just not true anymore. I am not sure how to write about what I don't know. I have no idea how this story ends. And, if I am being totally honest, it scares me.