They Work So Hard

One thing I think is really difficult for neurotypical people to appreciate is just how hard people with autism work to get through each day.** It takes a lot of energy, concentration, and processing to work through the various input that comes at us. Whereas neurotypical people filter through those things without even noticing, autistic people often find themselves having to consciously and intentionally sort through a tangled mass of sensory, social, and academic information. They know that the more they can organize and control that input, the easier it is to make it through the day, but managing it all is tough.

I came to really appreciate this when Sky started school. At first, he could "behave" in the morning, but he would get in trouble all afternoon. Then, he could do what was expected of him until about 1 pm, but he would fall apart between then and the time the bell rang at 2:30. At one point, he could make it until about five minutes before the bell, but he could never quite get to the end of the day without having some kind of problem with his teacher or the other kids. "I don't understand it," the teacher would say. "He always does so well for most of the day!" It was hard for her to see that it really was just a matter of stamina for him. He knew what he had to do to compensate for all of the challenges his autism presented,*** but he had a limited number of resources.

When you watch your kid go through years of occupational and speech therapy, and when you watch them literally practice how to behave in the classroom and how to interact with peers on the playground, you start to understand why school makes them so tired. When I send Sky and Stow off in the morning, I do so knowing the immense hurdles they will face during their day, and when I greet them after school, I do so with a combined sense of relief that they made it through unscathed and awe at their bravery. It's weird. I know. 

Many nights during Sky's first several years in school, he would fall asleep on the couch or while eating dinner because he was so tired from this work. While other kids were joining sports teams and going to practices in the evening, Sky was struggling to keep it together until bedtime. Often, he didn't make it, and once he fell asleep, NOTHING we did would wake him up. He was exhausted, and he needed to used every second of the twelve hours of sleep he got between dinner one night and his morning alarm the next day to store up the energy reserves necessary for him to get through another day.

A few weeks ago, I wrote about how much Sky has struggled during the pandemic. All of the coping strategies he has worked to develop over the last ten years have been laid bare by COVID-19 life. Even as those strategies have been crumbling, however, Sky has kept working. He has kept trying. He hasn't given up (even though he has every right to want to). Suddenly, though, it feels like we have traveled backwards in time. Because, suddenly Sky can't make it through dinner again. Every evening between 6 and 6:30, he hits a wall and finds himself completely out of energy--totally spent. We've tried different strategies to help him stay awake so he can get things done, but he invariably ends up asleep on the couch or the floor somewhere.

It seems like every time I walk into a room, I encounter a Sky-shaped crime scene. Now that he's 5'10," though, when he falls asleep just anywhere, he tends to be in the way. And, these days, we can't easily pick him up and carry him to his room.

This pandemic has been so hard for so many of us, but I want to give a special shout-out to all the kids and adults like Sky who have hung in there and done the best they can even when their worlds became completely unmoored. I see how hard you are working! You are amazing, and I am so very proud of you!

** Disclaimer: While I am talking about neurotypical people and people with autism, I want to note that I am doing it based on my experience as a neurotypical mom to two autistic boys. I understand that our story doesn't represent every story, but I also think our experiences can be instructive. In fact, the boys ask me to share these stories because they want people to understand what it's like to live with autism.

***Disclaimer #2: I am not suggesting that autism is somehow bad or that people with autism are bad. What I am suggesting is that in a neurotypical-centric world, the kinds of behaviors that were natural to him were often met with displeasure fro his teachers and peers.