That autism groove

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August 21, 2014 by whirlyjoy

Aida came back home last week to sleep over (“at Mom’s house”) for the first time since her move to a group home in June. This visit had been on her calendar for a few days, so she had had time to think over all the implications and prepare in the ways she sees as most relevant — deciding what meals and other excitement she might gain access to or should devote body and soul to holding out for.

Today she was carrying her purple overnight duffle slung awkwardly cross-body with one of the shorter bag handles. The duffle has no shoulder strap, and the iPad tote she has with her everywhere these days is worn cross-body. The autism mind groove tends to control these situations — the same one that has her insisting on her heavy fleece jacket well into the summer (she puts it on — I remove it and tell her it’s hot out and she doesn’t need a coat — but still she’ll snatch any opportunity to slip back into its familiar embrace on the way out the door).

In the autism groove, what is most familiar takes over — with exceeding determination (a trait I always include when asked to “describe Aida’s strengths”). That’s why, when I had her pull her bag from the trunk, she struggled mightily to feed her head and one arm through the handle until the bag’s bulk was wedged directly under her armpit — and above the iPad draped similarly but more comfortably in place — before marching to the front door. I didn’t try to stop her. She was very determined. And in such a happy mood, making her excited shrieks and flapping her hands so hard she gave herself the hiccups by the time I had the key turned in the lock. Not every moment needs to be a teaching moment — and really, why ruin her very real sense of accomplishment at getting that silly too-short strap properly into position over her shoulder?

There was a moment of negotiation when we got inside — did I really want her to take off her shoes and fleece jacket, because she knew a pizza restaurant was on the agenda for dinner and maybe we didn’t have to wait for 6 o’clock? Any time could be pizza time, Aida firmly believes, though the same world that makes straps too short on her bags also seems unnecessarily dictatorial about mealtimes. I helped her ease herself out of the duffle tangle and firmly pushed her fingers shut hand-over-hand around the two straps instead, then told her dinner was later and to bring the bag up to her bedroom.

She made it as far as the kitchen, where she decided a stop was called for to go through the cupboards and locate her favorite Trader Joe’s cranberry coconut granola, which she placed out on the countertop to gaze at lovingly and indicated was to be her breakfast in the morning. She didn’t trust my signed and spoken agreement with this plan, instead taking my hand in hers and leading me up to the whiteboard in her bedroom where we have always written her crucial bedtime message of the time and content of the next morning’s breakfast. Just to make sure there were No Misunderstandings About the Granola.

Finally, with her secondary mission accomplished, she went down to the living room to sit on her corner of the couch (the same corner Sheldon favors on Big Bang Theory — coincidence?), looked out the window to the street in front of the house, and asked, her whole face shining with hope, “tomorrow school bus?”

*****

Aida always has some kind of purpose to work towards. Those who don’t know her can easily miss this, distracted by the wild bouncing of her head and hands, her piercing voice, or perhaps in a quieter moment their attention is simply arrested by the heavy fleece jacket worn over running shorts and Crocs.

I’m pretty sure this all fits well into her master plan.

*****

Mimi, who has never known a life without her sister to love and watch over, is one of the best at noticing when Aida might be angling to take advantage of a momentary lull in supervision, and she feels it acutely when Aida gets away with inappropriate behavior in the community (AKA stealing food or disrobing, among other things). Not that she’s embarrassed for herself, or not usually — it’s more that Mimi’s protectiveness combines with her profound understanding of her sister as a complete and whole individual and her desire that others also recognize how smart and amazing Aida really is, if you’re not distracted by all the weirdness.

So when I picked Mimi up a couple of weeks ago after she’d been on a lunch outing to the mall with her sister and grandparents, it’s not surprising that the first words out of her mouth were a scandalized “Aida got away twice from Nana and Opa to steal food!” Once is understandable, you could hear in her voice, once can happen to anyone, but twice? Wouldn’t you think, after she’d darted into the candy store to grab a big handful of M&M’s from the bin, that a close enough eye would be kept to stop her getting behind the counter of the Cinnabon stand to reach for those pastries?

Was Aida upset? I asked, which as intended made Mimi laugh and report how smug her sister had been about getting her hands on all those treats.

“Also, Nana bribed her with an extra cookie when she wouldn’t get out of the car, even though I told her she shouldn’t!”

Nana called me a few hours later. “I guess Mimi’s told you about our misadventures at the mall? I just don’t understand it – Aida was so well-behaved the last few times!”

I can just picture Aida mentally rubbing her hands together and cackling gleefully as she crammed contraband M&M’s into her mouth: “Once again they fall for my master plan!”

*****

One of the perks of Aida living in a group home is that now I get to shower pretty much whenever I want to, instead of waiting for her to fall asleep first — totally, completely, deeply asleep, please god. Which on many nights never actually happened. There were even a few years back in the little apartment when I showered in the dark, as my deaf but otherwise super-sensory daughter seemed to detect even the least little glow of light under her bedroom door and leap into action, ready for the day to start or at least for breakfast, no matter what time it actually was.

Once about three years ago I tried showering in the early evening. I was pretty tired, as usual, from sleepless nights. Aida seemed so relaxed on the couch, watching Scooby Doo with her sister, just as she had for several evenings running… Suddenly through the sound of the spray and the suds in my ears, I heard Mimi shouting desperately for me. Aida had seized her chance to go outside to the car and climb into the trunk to look for the Cheez-Its she knew were in there from a shopping trip a few days before. I eventually got us both inside, dripping with soapy water, but not before she’d consumed a couple of the snack bags.

Once again her master plan had prevailed.

*****

No amount of scheming can make school start before Labor Day, though in the past Aida has seen school buses go by on earlier dates – practice runs, I imagine, or for private schools on different calendars – and tried to rush downstairs and out the door to catch them. School is a much-needed anchor to foil the chaos of those damned empty structureless summer days, when you look at it from down in the autism groove.

Aida’s master plan is the same as anyone’s, really. Gain some control, over something, in a life filled with uncertainty and change. Do your best to create pleasure and fun in the midst of an arbitrary, ornery world. You can’t catch every school bus — but sometimes you can score a handful of Cheez-Its in the trunk of the car while you scare the bejeezus out of your little sister.

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