Thursday, March 7, 2019


Here's a post I shared with some friends this weekend:

Sometimes this is what success looks like. He’s supposed to be playing a basketball game right now. We were there on time and tried to get him to play, but even before we got into the building, he seemed off.

When we got into the crowded hallway, he fled to a dark, isolated corner and told me he couldn’t do it today because he was “freaking out.” Indeed, he was clearly on the verge of losing it.

We tried for awhile to get him to stay and watch from the bench, tried to talk him through what was bugging (too many new things he said, including a scraped knee and the fact Sky was gone). He said he couldn’t get it back together and that he needed to go. We went together to tell the coach he was going and then we sat with him in the car in the parking lot for a bit. We told him how much we loved watching him play. He struggled to keep it together and begged us to drive him home. So, we did. And then we sat with him in the car in the garage for a little longer.

He got out and opened my door and hugged me. By this time I had tears in my eyes because it’s not easy to know what to do and watching your kid fall apart is hard. He said, “When I’m freaking out, my tummy is purple because I feel sick and my head, arms, and legs are red like fire.” Then he pointed to his heart and said, “And, this is blue because it feels calm but also really sad.” On the way into the house, he said, “I’m sorry you couldn’t see me play. I’m freaking out and it isn’t safety for other people and it isn't safety or for me.”

So, this is what success looks like sometimes. He knew he’d hit his limit, he was able to tell us and insist when we tried pushing. Not only that, but he could describe what his body felt like and understood he needed to do something different in order to stay safe.

I’m sad I didn’t get to watch second-grade basketball because it’s a total hoot, but I’m so glad that for this moment on this day he was able to tell us what he needed and get it


Friends responded to the post telling me how well we handled it and how proud they were of Stow. But, in the moment, it felt like Ren and I were doing everything wrong. Autism parenting feels like that a lot. The things we thought we knew, the things we thought would work, the things that we thought we could do--all of it--turns out not to be quite right. 

Stow is a conundrum wrapped in a mystery tied up in creativity and unpredictability. He has these moments--moments where he can so clearly articulate what is going on in his head, moments where he can advocate for himself BEFORE the meltdown happens. When conditions are right, Stow can demonstrate some top-notch reasoning and self preservation skills well beyond the capabilities of his brother at the same age. But, he also has a whole lot of other moments when his brain short circuits and the only thing that makes sense to him is to fight or flee. Nothing teaches you your limits as a parent quite like having a kid who toggles unexpectedly between these two extremes.

I know I haven't been writing as much these days. The short explanation is that writing blog posts used to help me figure out where we've been and where we're going. It used to be that I could see the storyline and understand its general arc. But, that's just not true anymore. I am not sure how to write about what I don't know. I have no idea how this story ends. And, if I am being totally honest, it scares me. 

Wednesday, January 30, 2019

Into the Vortex

Our first winter here five years ago, it snowed in early November and didn't melt until March. That was the winter of Ren's first spine fusion, so he didn't leave the house those four months except for the occasional doctor's appointment. In the meantime, as a novice to the ways of the Great White North, every time it snowed, I managed to make the entrance into our driveway smaller and smaller until I could barely fit the car between the two massive piles of snow I'd created and feared would never melt. (Here's a blog post about the various sensory bins I made to cope that winter). That we didn't pack up and move south after that first winter kind of blows my mind now. With Ren out of commission and the kids five years younger (so 9, 6, and 2), the polar vortex of 2014 was a long winter of snow shoveling and single parenting for me.

In the intervening five years, winters here have been pretty mild and the kids have become more self-sufficient. Sky loves to snow blow and Stow loves to shovel, so the snowfall we've had has been utterly manageable. This week that all changed, though, because in the last 10 days, we've accumulated more than 18 inches of snow and find ourselves staring down another polar vortex, one that looks to be worse than the last one. With windchills expected to get down to -50F or lower, schools are closed; work is closed; even the US Postal Service is closed. After a few dumps of snow and temperatures too low for any of it to melt, this place is starting to seem a lot like Hoth. I'm thinking about trading one of the cars in for a tauntaun. Tauntaun's seem somehow warmer. And, fuzzier.

Started our polar vortex "party" on Tuesday night with an indoor cookout.

Our main goal, this go around is to keep everyone in the house, especially Stow who likes to wander when stressed and who often refuses hat and gloves. To that end, we started by making a list of things we could do once homework and morning jobs were done.

The list they created for Wednesday.

Same sensory bin, five years later.

Car World, apparently.

By 10 am, we'd gotten through most of the list, endured three meltdowns, and broken up one brawl. So, then we stepped it up a notch and started to use the cold to our advantage, if it's possible to do that when it's -26F with a windchill of -50F.

Freezing boiling water.

Freezing bubbles.
Waiting for water to freeze.
Almost frozen and joined by pineapple.

Welcome to the Arctic!
I was so busy trying to keep Stow occupied that I totally forgot to put the chili in the crockpot, so all hands helped. Stow manned the can opener while Sky cut veggies and Pink browned the ground beef. Ren did some magic with onions.

Browning the beef.

Demonstrating how to cut a pepper.
It's not even noon on the first day yet (school and work are cancelled through Thursday). I started this post last night and squeezed in these sentences while the kids play "Don't Rock the Boat" and "Quick Cups." I have no idea how we will get through 36 more hours of this, but at least we have heat and a kotatsu.

Catan and kotatsu
If you don't hear from me again, you'll know I didn't make it.