Juicing the deal in the community


Confession: I have a Solitaire addition. It’s my favorite guilty pleasure that I excuse by considering it an Alzheimer’s prevention activity. But really it stokes my need to solve something, anything – particularly only days where curing autism on the side of a day-job that has an increasing share of frustrations, and the molasses-poured pace of the boys’ progress make me question if we are making any progress at all.

Around noon today after a few work hassles while waiting for someone else I allowed myself 3 minutes when I should be been doing 500 other things to solve the Daily Solitaire Challenge I couldn’t get this morning. I recently changed my preferred settings to be 3-card draw which supposedly is harder. I’m still not mastering the deal, so like autism I find myself re-dealing and replaying the same hand some ridiculous number of times, like the win mattered. After repeated fails, there’s an aha! that feels sweet – a boost upon the day, and a lingering lesson that sometimes I figure out, and sometimes inspires more questions.

Last night we had a similar mini-moment with Will and Jeff attending “Rock of Ages” on Boston. The plot- sweet Midwestern girl turns stripper, sees the light and wins her man – wouldn’t have been my pick. But our neighbor’s daughter the budding actor was a lead, Jenn our daughter suggested it, so – why not?

Fortunately the bawdy body jokes and expletives flew by the boys’ language cognition, and two last-minute grabs from the car somewhat saved the day – word cards and a squishy ball. Yeah they’re stimmy toys, but in the spirit of accommodating particularly in non-preferred environments, it seemed a bargain I could strike.

The word cards worked wonderfully. Will tried to listen and the loud rock music didn’t seem to bother him, so I was able to hold off over half of the first act. When he got a bit motoric I was able to gently lower his hands to his lap and below the eyesight of patrons in rows behind us. Jeff, hand over ears, clearly was enjoying the night less, and when Dad’s verbal reminders about quiet mouth’ didn’t work in the first act, the squishy ball diminished his self-talk a decent amount. He also took us up on occasional candies and while he looked at me as odd for singing when we could – “so what about your quiet mouth?” his puzzled look seem to say – by and large he stat still, apart from some classic Jeff fidgets that are uniquely his own (ahem.)

Life must be so hard when so many environments just don’t feel right, or you’re subjected to experiences that you dread. Jeff so willingly said Yes to a play in Boston this weekend that I forgotten how much he hates loud environments. With Will, because he initially said No to going, I made a deal with him. I told him how much Mom and Dad wanted to go, that Jeff wanted to a well, and that if Will did what Mom wanted on Sunday, Will could choose the activity of the day on Monday. I also reminded him to use his words if he needed a bathroom visit or a break.

The result was – it worked. Will jumped up to attempt an escape just once, perhaps even to adjust his long pants, but that’s far better than sometimes. He actually did use his words to request the bathroom near the end of the first act and waited nicely until intermission. Despite the self-talk Jeff was manageable and both tolerated waiting at the stage door for the neighborhood thespian to emerge with the larger than life hug.

I get frustrated with myself over time-wasters of any time and particularly my Solitaire thing. I don’t understand why I cling to it, and what it gives me. I insist on ritualistic adherence to many tasks in the boys day, and often wonder if it’s best to skip it all. I’m not sure which of multiple rearrangements of the deck eventually give me a win, whether the insistence on treadmill or brisk walks with Jeff prior to speech will make him attend, or labeling family drink cups in the seemingly futile hope that they won’t steal my Diet Coke because it has my name on it let alone steal someone else’s as a party.

Yet maybe our time-wasters simply set the stage for the bigger win, like yesterday. After multiple theater-movies where I missed half the show – after the Urban Nutcracker last year where Paul took Will out of the theater at least 6 times – we figure out how to work the hand we were dealt – and had one of those happy-stances when bum neurology met the real world and life proceeded as if we didn’t have autism, or barely.

In this game of life, here’s hoping the way we play the seemingly insignificant games leads us to the bigger prize.