I was trying to figure out the best way to break the news to J that this would be his last year trick-or-treating. I know J would be crushed about it, because, as I mentioned last year, it’s only been about three years since the whole trick-or-treating thing has worked out in his brain for him. Where the anxiety and social struggles finally settled to a point where he could function enough to let some stranger’s dog jump up at the glass door and bark its head off at him, to get the words “trick-or-treat” out, wait 30-60 seconds for someone to fish around in a candy bowl to come up with a treat, say thank you, and go to the next house. Where his brain was clear enough to take a deep breath and enjoy the experience.
But I needed to let J know so he could find his own closure to this chapter of his childhood. So he could really live in this last moment of his trick-or-treating experience.
J will be in high school next year. His voice has struggled to find its new preferred pitch for the last 4 months, but I think it’s finally settling to its new range. He is as tall as me now, and next year he’ll be even taller. It’s times like these I feel like his autism makes things unfair and I wish I could take away the parts of the autism that make life so, so very hard for him. I don’t want to take away all of it, because that means J won’t be J anymore, but I wish I could take away the debilitating traits. The sensory sensitivity that prevents him from doing things he wants to do with friends, or the sensitivities that prevent him from learning more about things he’s obsessed about because the noises in a classroom or gymnasium drive him crazy. The anxiety–which is probably his most debilitating trait–that when you hit it on the right day prevents him from going for a run because the number 1452 which gives him some anxiety now sends him in a panic attack and he can’t leave the house because of it. Those are the things I wish I could do something more about. Those aspects of his autism–the sensory and anxiety parts– are his autistic traits that made Halloween and trick-or-treating such a hard thing for him.
Yes, I know my thinking is falling into the”ableism” mentality trap. My gut instinct is to push J into our world, to be more like our world, because the world doesn’t understand autism and it’s not made for autistic individuals. There are days where I, for selfish reasons, want a more “normal” kid because it makes me different and left outside of the “normal” world too. There are parts of J’s autism I love, and the things that I’ve gotten used to, such as the social naivete or the no-filter moments. I love his honesty and his willingness to be who he really is. I admire that. But the truth is, we couldn’t make the world 100% accommodating for every single autistic person even if we wanted to. The world looks so different for each autistic person that it would be impossible to accommodate everyone in every way. It would be nice if we could, but in reality it’s impossible to make happen. J is going to have to learn to adapt in some ways.
We all have to deal with this no matter what our circumstances look like–we all have to live with each other in a society with social norms and expectations most of us haven’t had a say in. We all have to live that balance of complying when we should, even when we don’t want to (yes, sometimes I want to punch someone in the face when they’re really making me angry, but I know that’s socially unacceptable) or bucking the system where it’s unfair or marginalizing and we NEED to have a fair shot at the society game we have to play (because inequality happens because of race, gender, disablilties, all the time). Sometimes people do benign things I don’t like and I really can’t stand that. I know other people feel the same way about me too. That’s just the give and take of living in a community, and ultimately the rewarding thing about living with other people. Because we are all different we have a broader understanding of the world.
As I look at J, society, my expectations, and Halloween altogether–if I had to make honest evaluations as a parent in my choice to involve my autistic child in a cultural ritual rooted in my desire for him to be a part of a traditional experience–I think I’ve learned a lot of things. In retrospect, Halloween is just a cultural ritual. In the grand world stage, Halloween and trick-or-treating are mostly a North American tradition. Would J have missed out on the human experience not ever having trick-or-treated? No. Was it necessary to subject him to sensory distress and anxiety through trick-or-treating? No.
After all those years, when it’s time to hang up the cape, was it worth it?
I ended up telling J a few minutes before he went trick-or-treating with Steve that this was his last year. At the time, I didn’t get much of a response from him. His anxiety was revved up when the first trick-or-treaters came to our door. This was a different anxiety, though. Not because of dogs or numbers or sensory issues. It was because he was afraid he was going to miss out–miss out on what everyone else in the neighbourhood was doing. He wanted to be part of that social experience.
J came back after 2 hours of trick-or-treating, with double the amount of candy than W. Steve said he had a great time. He even saw friends from school while he was out. Not trick-or-treating, but hanging out together to watch the Vikings game, because, that’s what kids his age are doing now on Halloween.
“How was it?” I asked him.
“Great!” he replied enthusiastically. “I had a great time!”
“I’m glad,” I said. “How do you feel that this was your last time?”
He thought for a moment, “It’s really sad. I like really like trick-or-treating.”
I’m never, ever, sure I’m doing the right thing as a parent, especially when it comes to parenting J and when autism is involved. But Halloween? Maybe it wasn’t such a mistake after all. Over time–at his time–he was able to make things work inside of himself to participate in something his community was participating in. He was able to learn how to manage his anxieties to do it. And in the end, he really enjoyed it.
That can’t be all catastrophe, right?