Participation

This is a picture of Singularity and a few of his Cub Scouts friends marching in the parade at the beginning of our town’s annual street fair. He is the one with the long ponytail and headphones. The headphones block about 27 decibels. Since acuity of hearing is one of Singularity's superpowers, he needs them as a defense against an onslaught of random sounds coming from all directions. The headphones are like a security blanket for him. He almost always wears them when he is out in public. They have made it possible for him to be out in the world.

The headphones are an outward sign of difference. They attract a lot of questions from other children, and Singularity is now able to explain to them that he is sensitive to loud noises.  I’m proud of him for that. But I do worry that he may someday become self-conscious about wearing them. There are enough things to worry about already, so we’ll just cross that bridge when we get to it.

Anyway, back to the parade. Singularity got off to a great start, but he became less able as the parade went on. Our group was right behind a (very loud) Brazilian samba percussion band, and the street became more and more crowded as we followed the parade route.  As I mentioned, Singularity is very sensitive to loud sounds and unpredictable crowd scenes, and after about fifteen minutes he had become pretty dysregulated. He was aware of this (yay, Singularity!) and he asked me if we could take a break.

Part of me wanted him to fully participate in the activity with his friends and to go along with the program, which is one of the behavioral goals we are working on. On the other hand, it was clear that he really couldn’t participate independently.

I’m kind of glad that there isn’t a picture showing what I decided to do. I piggybacked him through the second half of the parade. I think that this is probably the last year of his life that I will be physically able to do this, and it worries me that I don’t have a better tool in my toolbox to handle situations like this. 

The real reason I wanted to write about piggybacking my sixty-pound nine-year-old is that I did it again last week and I’m still trying to work through my thoughts and feelings about the whole episode. 

Here’s the backstory: We decided that we would like Singularity to attend an afterschool program one day a week with his behavioral interventionist. We had wanted to have her work with him in his classroom at school, but the school has policies against this. So I thought that having the behavioral therapy push into a similar kind of group setting would give us the opportunity for her to work with him on generalizing skills he has mastered at home in a group setting. The program that we picked is also attended by several of Singularity’s best friends and classmates. As with many of my great ideas, Singularity was dead set against it.

It was important to me that he go to the program, so once again I piggybacked him along the route from school to the site of the afterschool program. I could have driven him, but I wanted him to walk with the other kids from his school. The walk is probably about a half mile. At the beginning of the walk, he was screaming and crying and trying to hit the behavioral interventionist and our program supervisor. As we got closer to the afterschool site, his behavior escalated to the point where he actually bit me. Now, I am the favored parent and Singularity’s most beloved person, so biting me was like his last resort. 

After he bit me, he saw that his behavior hadn't achieved its desired result, so he settled down a bit and accepted the reality that we were going to be going to the afterschool program, whether he liked it or not. From a behavioral point of view, this may have been an "extinction burst", where the undesired behavior has a sudden increase in intensity, before it decreases. It's too soon to know if the biting behavior was an extinction burst, as we'll have to try it again and see what happens.

Did I mention that I was taking him to a program where he would be able to spend more time with his best friends? And that there were three adults, including his beloved mom, to make sure that he was going to be all right?

Non-autism parents reading this at this point are probably wondering why I would be so cruel to my child to drag him kicking and screaming to this program that he so clearly did not want to attend. Honestly, as I am pondering the experience, part of me is asking myself the same question. And then I remember that my goals for Singularity's attendance at the afterschool program are for him to learn to manage himself in group activities, to self-regulate better, to go with the program, and to be able to participate in things he is interested in. He is going to need to be able to do these things to get what he wants out of life. I think. OK, I'm pretty sure. After all, Singularity is quite motivated socially. On the other hand, what if he turns out to be able to construct a happy life for himself where these skills don't matter? It is impossible to know. 

Being an autism parent requires a lot of tolerance for not knowing how things are going to turn out. 

This week, Singularity announced that he was not going to the afterschool program on Thursday. He was truly distressed about it. After conferring with the behavioral team, when I picked Singularity up after school I told him that I had decided that this week we would not go to to the afterschool program, but that we would have a home behavioral therapy session instead. He then declared that he would not be participating in the home session either. But he did so willingly in the end. 

And we will be giving the afterschool program another try next week. Next time, I will probably drive him over to the afterschool site in time to meet the walking group when it arrives. And over time we will work our way back to having him walk there himself. Or not. It is possible that this may never work out, but we are going to try to work through it.