April 6, 2014 by whirlyjoy
Things have been particularly a-whirl here in the spin cycle these past few months. Autumn is often, for me, a time of reflection and new beginnings; this year it felt a little like a semi truck rolled over me as I entered that contemplative path under the bright foliage, and stretched and flattened me so thoroughly that only now at the opposite equinox am I peeling myself back up to my feet again. This is what it feels like, making the decision to place Aida in a group home.
Here’s what finally happened: I gave up.
I can already hear my friends gasping in protest. This isn’t “giving up”! It’s a new attack, a fresh start, an alternative approach, the next phase, a different way of doing things… Last week, as I was inching my way towards what I’m writing here today, I posted on Facebook: “Still wanting to believe I can be superwoman…” — and was flooded by immediate “but you are!” responses from people who are very dear to me.
But guess what? I’m the one doing the giving up, and that’s what I want to call it. This is my party: Superwoman is being shown to the door.
It hasn’t been pretty. The real Supergirl is nothing like her comic book persona, all perky and well-coiffed. She’s a pretty wild bitch, in fact, definitely at home out along the borderlands of insanity, and she has been kicking and screaming at me for months while I try to find a quiet corner to enjoy a good Merlot and figure out a game plan for a life where I could maybe just show up in sweats now and then instead of always those damned kick-ass high-heeled boots and a fucking magic lasso or whatever.
Kids with autism generally like consistent schedules. They like to know what to expect, with no surprises or any of that batshit spontaneity the rest of us try to throw at them in the name of “fun.” These days, at the start of every month, I take my Vis-a-Vis markers in whatever colors strike my fancy that day, and fill in Aida’s schedule for her on a whiteboard calendar grid — who her caregiver will be on each day, when she will be swimming, when Nana and Opa are coming over with one of her beloved cookies, any doctor appointments or occupational therapy sessions that are on the horizon.
Still today on occasion, a Polaroid with velcro on the back will fall out of a stack of books or show up under a cabinet, reminding me of the tools we once used to laboriously teach her to understand even the concept of a schedule, back some ten years ago when she used maybe three signs and couldn’t read at all yet.
We’ve come a long way from those daily picture charts we started with. And Aida has progressed steadily as well, to increasingly try to take control of her fate as depicted in her schedules and calendars. She’ll look it over carefully when I’m done filling it in, and then turn to me with extra suggestions: “pizza party Sunday brownies?” she might sign, with a hopeful expression on her face. Or: “swim Mountlake Terrace pool poptart snack?” Now she can make her iPad say these things too, over and over, in the measured “American adult female” voice option that is very unlike the pensive chirps or frustrated shrieks that are her own natural communicative sounds.
Sometimes Aida just loses patience with the whole process, though. Two nights ago, for example, unhappy at the continued absence of her favorite bakery from the board (it went belly-up quite suddenly last month to the intense dismay of many in the neighborhood, not least her), Aida made a rush for it with dripping hands fresh from washing up for dinner and smeared every last bit of ink away.
You have to appreciate her spirit – haven’t we all had a calendar day or week or month ahead of us that we just want to swipe out of existence and get someone to rewrite with at least a few extra donuts, no doctor appointments and a couple more parties put in?
When I talk about giving up, I mean accepting that certain dreams I once had for Aida will never be. She’ll never sit with tears rolling down her cheeks and snot dripping from her nose when she gets to — you know the part — in Little Women; or have late-night conversations with friends about what the One Ring in Tolkien’s universe parallels in ours; or stand at the brink with Walt Whitman’s noiseless, patient spider. She’ll never phone me in excitement about a new job, or crying over a broken love affair. She’ll never sit with me on the terrace of my favorite café, behind Notre Dame in Paris, drinking an espresso, eating a dark truffle, watching a juggler or a violinist on the bridge and the sun beginning its evening descent…
Of course, I can just see Mimi reading the above paragraph an hour from now, rolling her eyes and saying “Don’t be weird, Mom!” Or her other current favorite: “Just stop talking.”
We have no guarantee that our kids, of any stripe, will be drawn to the same things we are, or to anything that our limited imaginations can come up with for them. And I have many, many friends, especially those-with-teenagers-God-help-us, who have already had to ask themselves some equivalent of: “Is he going to make it?” “What is going to happen to her?”
So there is some peace, in fact, in the knowledge that certain outcomes truly can no longer be expected for Aida.
Superwoman adamantly does not want to hear this — the part of me still in somewhat tattered spandex desperately continues to believe that if I can just do battle for another little while, Aida will wake up one morning, talking up a storm and making plans for college, or mission work, or performance art… or even just to head over behind the AM/PM and comfortably smoke a little weed.
The great thing is, all that I’m giving up on here are my own (dismally outdated) dreams for Aida. This is purely my own grief, these are my own things to mourn. And no doubt I’ll have others to add to my maternal pyre on Mimi’s behalf, down the line — assuming she’ll even have the patience to explain to me what she’s up to with her InstaPixaGramming and so on.
Aida? She mostly just wants a nice, steady calendar where no one messes with her baked goods and her party nights. So why shouldn’t Superwoman retire her cape and start showing up with a tray of chocolate chip cookies now and then instead?