September 12, 2013 by whirlyjoy
Yesterday was one of those that I call “lost days,” when Aida has been awake for two nights running and I’ve lost the ability to think straight or emote anything but fatigue, impatience and twinges of despair.
There are fewer lost days than there used to be in my life, with better sleep an ever-moving target for Aida’s multiple medications, and I have more help getting through them than I once did. That’s a good thing.
I can recall exactly the first time I saw the thought take shape in my mind that maybe I wouldn’t be able to take care of my daughter forever.
Aida was around seven or eight years old. It was before we’d found medication to help smooth out her extremely disturbed sleep patterns, and I spent countless evenings – easily five or more nights a week back then – trying every possible way to help this shrieking, screaming, agitated, head-banging child come down from what is known in the autism world as a “high arousal state” to, please god, something resembling calm and quiet, if not downright sleep.
I had all kinds of strategies for this. Some were vaguely scientific: “Maybe if I put her to bed at precisely the same time every evening, with exactly the same routine leading up to it? Or wait, I know, it needs to be the same solar time, when the sun is at the same point on the horizon because that’s what her weird hypersensitive autistic body’s tuned into!” Others were tinged with magical superstition: “She seems to calm down when I place my hand just so between her shoulder blades – or at least she did yesterday, so if I could just find that exact spot again we’re good to go. As long as the moon’s in the seventh house.” Then there were simply the approaches of last resort, which pretty much involved closing the door on the noisy distress in the bedroom and shutting myself into the bathroom to cry, while Mimi was left to the company of the television downstairs.
Back then there was a large poster made of Aida’s handprints in different primary colors, in one of those cheap Ikea frames, hanging on the wall in the girls’ bedroom. It had come home with her from first grade – her own handprints, they assured me, although I couldn’t imagine how they’d managed such a tidy job of it as I was certain she’d been absolutely disengaged if not actively resistant to the project.
One night I was trying my latest calming method – lying in bed next to her, not hugging her as that wasn’t something she could tolerate back then, but just holding my calm body (yeah, right!) against her agitated one, trying with my slow, gentle breathing to osmose this rhythm into her dysregulation. When you’ve carried someone inside your body for nine months, hoping such a process might work really isn’t difficult.
I was facing the wall with the handprint poster – and as I lay there, those couple dozen brightly colored hands seemed to grow and move towards me menacingly, to the point where I felt I was suffocating. And I thought, I can’t do this forever.
When Aida did fall asleep that night, I took down the handprint poster and set it out with the garbage to be picked up the next morning.
I’ve learned since that Aida probably hated having that artwork up anyway. I got the message after our last move, almost four years ago, when she and Mimi each got their own rooms at last (if you don’t count our moving Mimi to the basement laundry room during the last year at the old place, when she was no longer able to sleep through her sister’s raucous nighttime behavior; Mimi certainly doesn’t count that).
I’d been saving up some of the finger-painted, pasta-strewn, glitter-covered art projects that literally never stop coming home from self-contained special ed classrooms. By this time Aida would unenthusiastically glance at them with me as we’d pull them from her backpack (but I was thrilled – however grudging, this was “shared attention,” a developmental milestone for many kids with autism and a major hurdle for mine).
Soon after we moved in, I hung a selection of these oeuvres d’art around her bedroom – I tried to use a mix of what I found aesthetically interesting, and what she’d perhaps shown a bit more enjoyment in herself (knowing that I was possibly grasping at straws on that point, imagining from a flicker of her eyelid or a slight grimace that she was expressing some memory of pleasure at the creative process). I watched Aida – predictably – studiously ignore this newly materialized décor when I tucked her into bed that night.
This was one of her rare quiet evenings, and after about a half-hour of silence from her room I assumed she’d fallen asleep, and relaxed at last into a glass of wine and an episode of Law and Order: SVU.
Twenty minutes later, I heard the door to her room crash open. From where I sit on the couch I can see the top of the stairs where our bedrooms are, and there she appeared, naked but for her pull-up, holding stacked in her hands every single bit of art that I’d so carefully hung just a few hours before. I watched as she flung them to tumble in one big heap down the stairs. Then she went back to her room, slammed her door shut again, and went to sleep.
Before I went to bed I picked up the strewn bits and pieces, stacked them neatly, and tossed them in recycling.
This week in my parents’ support group, our facilitator wanted to help us think about who we are apart from being parents of children with autism, and for me the exercise she gave us produced the poems above.
If this blog post is a bit disjointed, that suits the subject matter (and my fatigue level). Autism definitely puts a family and everyone in it out of joint. Still, our writing exercise reminded me of why I write about any of this in the first place – not just to share what life is like specifically for me and my family – but for an open-eyed look at Life as a container for the full spectrum of human experience. To remind me that I get to be more than an autism (and precocious tween) mom. To remember to look in the mirror and see my whole self sometimes. And maybe give myself a gentle kiss – or just touch my lips to the mirror if that’s what gives me a little sensory kick…