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!

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