Thursday, April 13, 2017

Rock Bottom

In honor of April and Autism Awareness, here's a little story about what autism is like at our house...

A few weeks ago I read this article that references this study. The headline "Austistic Children 40 Times More Likely to Die from Injury, Study Shows" was bad enough, but, by far, the worst part was the statistics quoted in the study. These researchers at Columbia found that the average lifespan for individuals (in their study) with autism was HALF that of non-autistic individuals, or 36 years compared to 72 years. When I first read the article and study, I figured these differences had to do with the way the numbers were being manipulated or the way the study was being reported out (I'm a literature person, after all, so I think a lot about the construction of media narratives).

But, then I looked closer at the study and thought back over my own experiences and realized that maybe things really are this scary for families that live with autism. The weekend before this article came out, for example, Stow almost drowned THREE times during our visit to an indoor waterpark. Even though he'd had 8 weeks of private swim lessons focused specifically on how to be safe in the water (including repeated practice of getting onto his back, floating face up, and calling for help), and even though he had access to a life jacket, AND even though Ren and I were within feet of him each time and warning him as he headed into danger, he still got in over his head (in the EXACT SAME SPOT!!!) three times. The only reason he didn't drown was because we were right there, ready to jump into the pool and pull him out of the water. But each of the three times, he was truly surprised by his near drowning.

I thought about the indoor water park when I worked through my thoughts on the CNN article, and gradually it dawned on me that I was only just beginning to understand what Ren and I are up against. I know it sounds strange, but I became aware, in ways that hadn't quite solidified in my brain before, that Stow is not inherently safe.

"Koi" by Sky. Completely unrelated (although the water is a nice tie-in) to the post but a nice diversion from a grim discussion.
I've got six (well, technically 12, but is has only been 6 since the first diagnosis) years' experience as an ASD parent. I should KNOW what I am doing. But, in all those years before and after Sky's diagnosis, I never once worried about whether I could keep him safe. Sky's ASD runs along the obsession, stim, talk-incessantly-while-totally-oblivious-to-social-cues gamut. I mean, sure, I worried that he would be bullied and that the world might not accept him, but I never worried about whether he was at risk of severe physical harm. But with Stow, we need to figure out how to parent completely differently as we are constantly trying to anticipate and reduce risk. I thought dealing with non-stop discussions of Star Wars was exhausting, but it pales in comparison to figuring out how to keep tabs on a risk-taking wanderer who has little regard for self-preservation and with whom it's not terribly easy to reason.

Stow's ability to be destructive or to create risk for himself is simultaneously awe-inspiring and maddening. This week, for example, he figured out how to unlatch the screen on his second-floor bedroom window. As a result, he now delights in unlatching the hooks on the screen and watching it plummet to the ground below. The first time he did it, we thought it was an accident. The second time, we assumed he liked the thrill of watching screen drop but would curb his risky behavior once we explained to him the dangers involved. The third time he took out the screen, we realized this was now a thing and that we had to intervene. Apparently, life is freer without the encumbrances of a screen on the window because today (less than 48-hours after figuring out how to take off the screen) despite our near-constant surveillance, Stow managed to open the window, pop out the screen, and sit on the window sill to take a leak. OF COURSE this is dangerous, but we had no idea he would do that until he did it. Ren is installing new safety locks as I type. But, I stand amazed by how quickly and persistently Stow courts danger, and I have no illusions that these new locks are the answer to our problems. A kid intent on exploration without any regard to personal safety will find other ways.

Last week, Stow discovered that if he runs out of the house as fast as he can and jumps on his kick scooter, no one can catch him as he rides pell-mell toward the main road. So far, he's stopped without venturing into the traffic, but we have no illusions he will continue to make that choice. We're working on strategies. Unfortunately, there aren't a lot of contingency plans for an old man with a bad spine and two kids who aren't quite old enough to control their rambunctious younger brother who seems hellbent on self-destruction. Our current strategy is to keep him inside and distract him with the iPad (it's a horrible strategy).

We also utilize safe spaces. His room is currently not one of those (though it should be soon). The corner of our living room is his other calm-down/safe space. A few days ago, when he was there, he did considerable damage to the door and wall, gouging out chicken scratch messages Tom-Hanks-in-Castaway-style using the pressed souvenir penny we'd bought for him at the zoo (WOW, that 51-cent bargain souvenir turned out not to be a bargain after all!!).

"Musings." Door carving by Stow. From a distance, it's not so bad. Up close, it's an impressive series of deep scratches. 
"2+2=4." Wall carving by Stow. Ironically, once I figured out those were twos instead of backwards fives, I felt a lot better about the fact he was practicing math facts on the wall.
So, I don't know you guys. I guess I've got nothing after all. None of what I thought I had figured out applies to where we are now. This is unchartered and unnerving territory.  It's exhausting and forces us to draw from reserves we didn't even know we had (and that we probably shouldn't be drawing from). But, we know our only option is to dig deep and hope we don't reach the rock bottom of our reserves before things change and life becomes more sane again.


UPDATE #1:
Update: 2:30 p.m. April 13th. Now, let's see how long this lasts.
(Also, I don't love that it's called a Window Warden, but oh well.)

UPDATE #2:

April 13th, 3:30 p.m.
Stow has figured out how to break into his brother's room and climb out his window onto the tiny roof. More window locks on the way!

UPDATE #3

April 19th, 4:15 p.m.
Stow has demonstrated that I should never--not ever--think I know how hard things can be or claim to understand the outer limits of chaos. On the bright side, I feel like I now have a much better grasp of the phrase "infinite possibilities."