Saturday, January 30, 2021


According to my Fitbit, over the last few weeks I've gone from sleeping an average of 7 1/2 hours a night to sleeping about 6. A couple of nights, I got just over four hours of sleep. When I was in college, 4 hours was no big deal. When I had newborn babies, sleeping that little was par for the course. But now that I am pushing 50, 4 or 5 hours a night is excruciating.

I stopped sleeping because Sky stopped sleeping, and Sky stopped sleeping because the pandemic finally got to him. For months he has been saying that he can't understand why so much of life is going on as usual despite the fact there is a pandemic. What he means is that while his life hasn't been normal at all, his school work hasn't changed. Many of his outlets--hanging out with friends, going places as a family, playing tennis--have been cut off or greatly curtailed. Every time he goes to school, the kids are spaced so far apart that there is little opportunity for him to interact with the other people in his class or in the hallways. For the purposes of keeping the kids safe, this strategy has worked remarkably well. In a school of about 2000 students, they have had less than 100 cases of COVID, and none of those have been tied to in-school transmission. But, the teachers can't teach how they would normally teach, and the students can't interact in class the ways they would normally interact. 

So, after a long, weird day of school, he comes home with a ton of homework. Then the next day, when he is home for the day doing remote learning (so the other half of the students can be in the building), he usually gets MORE homework. And, for awhile, he managed to handle it. Two months in, though, he took a day off from doing his homework because it was his birthday. The break made him realize just how bad school was making him feel.  

Suddenly, he knew that he couldn't sustain the same level of discomfort on a regular basis, so it got harder and harder for him to get work done. During the next two months, we dealt with more and more perseveration about school and the pandemic. It was exhausting, but it turns out it wasn't nearly as exhausting as what came next, because finally one day, he came home from school and told us he just couldn't do it anymore.

As a parent and a hopeless overachiever, I had no idea what that meant or how to respond. I tried to be encouraging. I offered to sit with him in order to help stop his thinking spirals every time they started. I was hoping that eventually he would get back on track and be able to stop the perseverating thoughts himself. For several days, we spent hours and hours together in his room trying to get through even the easiest of assignments. But, it didn't get better. The perseveration got worse, and he started missing assignments. A couple of nights ago, he perseverated for over an hour about the amount of work he was being asked to do. The thought of even starting the work sent him into a tail spin, but so did the thought of not doing anything. Eventually, the spinning wore him out, and he fell asleep.

Even the fun stuff (ie robotics) isn't much fun anymore!

We are working with all the specialists and trying to get him through this. But, you know, I don't think he's wrong here. This IS a pandemic. We need to be treating it like one. We need to acknowledge that it is impacting many of our kids in ways we can't possibly understand right now.

The difference between parenting a neurotypical kid who is struggling and an autistic kid who is struggling is that you pretty much completely have to immerse yourself into the autistic kids’ world and way of thinking in order to get a handle on what’s happening. With Falcon, the problems and solutions are a lot easier to identify and work through. With Sky or Stow, it can feel like a total slog; it’s like being pulled into a quagmire and not really being sure you can find your way out. That said, Stow and Sky are barometers for the complexities and challenges of human experience in a way that never fails to surprise me. And, they are almost always right about what is wrong.

So, it strikes me that I need to start listening better. I've stopped trying to help Sky stay awake to work on his homework and have instead started encouraging him to do what feels right for him right now. On Monday, I will meet with his teachers, and I will talk to them about universal design and ways to assess learning that maybe aren't homework and test based. Most importantly, though, I am going to remind Sky every day that his grades don't matter nearly as much as his well-being. 


If you haven't seen this amazing video by a high schooler who was asked to express what the pandemic feels like, please take a look (LINK).

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