Sunday, April 7, 2019

Calibrating

I tried taking Stow to karate today, but when we walked in, the class before his had more people than usual, and they were doing something he didn't expect them to be doing. This triggered his anxiety, but I didn’t realize it until he started to freak out because he couldn’t quite get his belt tied right.

“Let me help you,” I said.

“No!” he replied, angry that I would embarrass him by offering. After refusing my help three times, he thrust his hands into the pockets of my jacket and pushed me to the wall.

“I don’t want to do karate today,” he whispered. I bent down to ask him why, and he grabbed my head and pulled me close. “We have to go now,” he said, his nose nearly touching mine, panic in his eyes.

“We came all this way, and it will be your turn soon,” I said, trying to calm him some. With his hands still in my pockets, he pulled away hard and then jabbed them into my chest.

“Now!” he growled, trying not to raise his voice or burst into tears. “Or, I’m going to run away.”

I didn’t want to leave. We’d driven 30 minutes to get there, and I’d already paid for the lesson. Plus, the instructor expected him to be there. But, the thing is my calculus about how to handle moments like this ALWAYS takes into account what other people will think and/or how he SHOULD act. When he is melting down or doing or saying something “inappropriate,” I am always simultaneously trying to figure out how to help him without somehow inconveniencing other people.

Stow losing his shit because a bunch of kids are doing things he wasn’t expecting shouldn’t be traumatic for me, but it is. Part of the reason, of course, is because it breaks my heart every time his disability gets in the way of him doing things he would probably enjoy. But this article helped me realize (in a way I hadn’t before) that maybe the bigger reason I find all of this SO hard is because every time it happens I realize that we spend so much time and energy trying to get him to behave in a way that’s acceptable, when really we should be focusing on how his behavior expresses exactly what he needs.

I wonder what would happen if we lived in a world that was calibrated to a wider range of behaviors and needs? I know for me, at least, it would mean that I would no longer be trapped in an impossible conundrum that somehow requires me to meet the needs of my child while also making sure he functions appropriately in a world that isn’t terribly hospitable to him.

Thursday, March 7, 2019

Success?

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.

Saturday, January 19, 2019

Slow Learner

I know I haven't posted in awhile. After 475+ posts, it seems I no longer know what to say. I mean, I want to encourage you, to inspire you, to tell you you're not alone, to make you laugh. But, man, we're struggling right now. We have been for awhile. Way too many years into this autism journey, we still find ourselves a bit lost.

What do we do when the therapies don't quite work? When behavior gets so out of control it disrupts the whole family? When all of our skills just don't quite seem to be enough? These questions (and many more) and their seemingly unknowable solutions clatter around inside my brain, like the spinning of a thousand tiny hamster wheels.

All the hamster wheels in my head, in graph form.
I'd like to say that all these years with autism, food allergies, spine issues, and the mental health stuff have taught me how to be more "zen" about the things I can't control. But, honestly, I get through most days kicking and screaming. Trusting the process, going with the flow, adopting an attitude of acceptance, having a beginner's mind--whatever you want to call it, I'm pretty bad at it. At this point, I am convinced that all of this is meant to help me grow as a person; the problem is that I've always been a slow learner.

When the second diagnosis comes six years after the first and you find yourself once again parenting a newly-diagnosed kindergartener, you might think you have enough experience to actually know what to do next. But, no two kids are alike, autism or not. Whereas Sky broadcasted his impending meltdowns by an ever-quickening agitation that turned him into a human pinball and tumbled out in a tsunami of words, Stow has always struggled to communicate what's happening inside him. So, when the triggers come (and it appears there are many), he panics and fight or flight mode kicks in. Without going into too many details, I'll just say that it is physically and mentally exhausting to help Stow figure these things out while keeping everyone safe. It has also become more and more clear to us why the average life span for people on the spectrum is half that of the general population. The ways in which Stow can find himself in precarious situations never cease to catch us a bit off guard.

These signs around the house remind Stow of his other options.
So, at OT, we work with Stow to identify when his heart rate has quickened and his body feels out of sorts and to help him understand how his body moves through space so he's less likely to break things or run into/over people. At speech, we work with him to develop the ability to access the words he needs when his body and his brain are telling him to panic. The behavioral therapist helps Stow untangle his big and confusing emotions. Karate gives him a highly-structured environment where he can practice hearing, processing, and then doing what is instructed. His school IEP team has doubled down on support, keeping an aide close, especially in unstructured times, and switching him to the "short bus" to help relieve the social anxiety those long minutes on the bus can cause.

First day on the "short bus."
At home, we have been sticking as close as we can to the gfdf diet and striving to have as little change as possible. We've all but stopped taking trips longer than an hour and try to keep every day exactly like the last. When we do have things to do, we talk about them in advance and make sure he knows exactly what to expect.

Ren's spine pain returned a few weeks ago, along with several troubling new symptoms. Surely the meltdowns and the stress are part of the back problem, but it's a catch-22. Because, once the spine goes south, so does Ren's mood, and our routine, and the overall ability for the household to stay on an even keel. Ironies abound as I continue to learn how to support him, too.

I don't suppose I'll ever know how we ended up with our particular constellation of challenges. As a person who looks for meaning in everything (I'm a literature professor, after all), learning not to ask why and simply to embrace this chaotic mess of a life is surely the biggest and most important lesson I will ever learn. Here's hoping I "get it" sooner than later!