Tuesday, February 5, 2013

Uncertainty Principles


I don’t have words of optimism today. I can’t always be the object of an appreciative “I just don’t know how you do it,” because some days I don’t do it.

Nothing out of the ordinary happened today; in fact, there were noticeably less major meltdowns and other traumas. Jamie had the boys for most of the day while I worked.

And I got stuff done.

Not only did I work my administrative magic, wading through e-mails with verve and poise, but I even logged in a few hours of reading for my PhD exams (a mere two months from today). I had a Panini at the Italian bistro near campus, chatted up some colleagues, and left school well-satisfied.

I kept rocking at home too. I moved furniture around like a boss. This is a regular activity in our house as Liam is both a climber and a Shiva-like destroyer of home décor. Today I managed to fit two Ikea dressers into a single undersized closet and arrange them in such a way that all the drawers opened enough to access all their contents. My engineer father would have been proud. Maybe.

Jamie and the boys came home from a therapy outing at the aquarium, we started snack, put on a movie in the kitchen, and put on a pot of afternoon coffee.

And I pulled Liam off the counter he was climbing to reach the DVD player.

Then I stepped in half-masticated food that was slowly accumulating across the kitchen floor.

And I pulled Liam off the counter he was climbing to reach the DVD player.

Then I walked Liam to his bedroom so both of us could walk away from his screaming and pinching jag.

And I pulled Liam off the counter he was climbing to reach the DVD player.

Then I turned the gas off of the stove—Liam likes to turn these fascinating little knobs, but not enough to turn on the burners.

And I pulled Liam off the counter he was climbing to reach the DVD player.

And I pulled Liam off the counter he was climbing to reach the DVD player.

And I pulled Liam off the counter he was climbing to reach the DVD player.

And then I sat. On the kitchen floor. In front of the counter. Beneath the DVD player to block Liam while I ate dinner.

And I sat thinking of the night to come, and it was like looking down the barrel of a gun.

***

Until you live with someone with autism, you can’t really understand what living unpredictably really means. Example: every night—every single night for the past 4.5 years—I have gone to bed knowing that I would probably be woken up randomly. I tell this to people and I think they can imagine the exhaustion (maybe a little), but it’s not the exhaustion that kills. It’s the uncertainty. It’s trying to fall asleep quickly because you don’t know how much rest you’re going to get before you’re woken up, but it’s also a heightened awareness, a straining to hear a bouncing of bed springs or hooting so that you don’t just barely fall asleep and then have to wake up.

Anxiety.

I went to bed at 9:00 pm last night, hopeful for maybe a little extra bit of  sleep. Liam woke up at 9:10, just as I was dropping under.

This is what other people cannot fathom.

Being certain that no matter how mundane or spectacular a day has been, no matter how you plan, no matter how well you prepare yourself, the only thing predictable about autism is that it is so God-damned unpredictable.

I know that there’s a cliché silver lining implication in what I have written above, but I’m not going to pull it out. Not today.

There are days like this too, days where you put your face in your hands not because the day has been more challenging or heartbreaking than usual, but because you know that tomorrow is another day. Another day of who knows. And you also know, deep in your tired bones, that today is not yet done.

Some days you just can’t be the smiling target of another “I just don’t know how you do it!”

And that’s okay.

Who knows what tomorrow will bring?

1 comment:

  1. I will just say "God bless you for doing it every day"

    ReplyDelete