I’m not very good at the “holiday” thing.
Autism doesn’t allow me to take many holidays. If I’m going to take a break from life (for a few hours or days) the number one requirement has to be that I’m by myself. Maybe with another adult like Steve or a good friend. Far away from home. With no kids.
Family holidays are never holidays for parents—moms especially. Family holidays for autism families are never, NEVER, holidays for anyone—parents or kids. A lot of times you’re in a place away from home, with lots of other people who are unfamiliar with your needs or schedule, who are all off of their schedules themselves. All of that adds up to a lot of stress—a lot of “high alert/autism battle field” mode.
I’ll never forget a Christmas holiday we spent at Steve’s parent’s house where Steve and I “slept in” until 6:30 am (kids with autism NEVER sleep and are ALWAYS up early), only to get up and realize that three-year-old J had gone missing. We scrambled around the house and couldn’t find him anywhere. Finally we figured out that he must have slipped out the front door when someone else in the house had opened it to check on something outside. Sure enough, we found him down the street by himself, looking utterly confused. Those early holiday times were SO stressful, in so many ways. J always had a ton of meltdowns, and I was more than ready to get home and back to the work of our everyday life. I’ve got tons more stressful holiday stories like that…
Even now, twelve years later, we struggle with holidays—not with J getting lost or slipping through the cracks with all of the commotion, but with the “downtime” part of it. “Downtime” for kids with autism is really hazardous. “Downtime” means no schedule which can cause anxiety. “Downtime” means hours and hours of stimming—checking out of the world, getting lost in the autism zone. A little check-out is fine. Lots of check-out becomes brain rot (think binge watching Netflix). When J checks out for long periods of time, he gets cranky about interacting with and complying with the “regular” world. It causes behaviour issues. It causes a lot of mom guilt. If I leave him alone for any period of time, J starts to digress.
So with my track record, I wasn’t sure how this round of holidays was going to go. My parents came in last Saturday night for the Thanksgiving holiday, just hours before Steve came back in town from his conference in Dallas and I already felt drained. My head was so foggy and my energy was low because I had come down with a sinus infection the day before, but I was glad to have everyone around. The great thing about being at this point in my life, at this part of my relationship with my parents, is that they understand my life and what’s going on. My parents were totally understanding. I don’t have to “put on a show” when they arrive (I’m so glad I’m at that point where I can just say, “here we are! And here’s our chaos” and be okay with it). My mom helped around the house and made a great turkey (which was a big relief—she made turkey for all the turkey eaters and I could just put together my little vegetarian dinner and it was so stress-free and easy).
But I was hit pretty hard with that darn cold all week—I took a lot of naps during the day (since I couldn’t sleep or breathe all night long). I couldn’t do all of the “homeschool homework” things I wanted to do with J—the things that provide him with a schedule and keep him checked into our world. And I was really frustrated with that. Because I know that’s what keeps J’s world together.
In the end, it turned out okay. J checked out on his days off, taking FULL advantage of his days off, listening to his ipod over and over again (he gets borderline obsessed with it). We were able to get some “homeschool homework” done on Saturday and Sunday. He didn’t get overly moody or cranky and he was really well behaved through the whole time.
My mom commented on her stay here about how much growth and change she’d seen in J since the month she spent here in June. She mentioned how much more calm J was, how he got less frustrated, and how much more patient he was. He even got through the entire Elf musical Wednesday night without any meltdowns, despite the fact that he was exhausted before we even left the house. She also noticed how much more “sociable” he was with both her and my dad, with much more mature conversations than she had with him even back in June.
It’s those great changes that make it so hard for me to take a break from the pushing and teaching with J, even if it’s only for a few days. With J, even a few days out of routine can put us back for weeks, even months and I harbour a lot of anxiety connected with that. When I realized at the end of the Thanksgiving weekend that I had gotten very little “accomplished” and the world didn’t fall apart, I didn’t know how to process that.
I’m still trying to process that.