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!