Flying Solo

Flying solo x 2: Yesterday T left for Portland to visit B, the first time he has seen him since he moved in April; also the first time he’s been on a plane since he flew to Seattle nearly 3 years ago.  I’m so happy for him, that he and B will have the next four days together reconnecting in person, exploring that wonderful city, and just hanging out. 

It feels like ages since I went away although it’s only been a few weeks.  A lot has transpired in such a short time, in some ways, in other ways it’s been typically uneventful. For now there’s been a lot for me to rehearse or learn to do while T is away, so many things usually in his wheelhouse, from carrying Ruby up and down stairs to preparing much of V’s food. (He’s a meat and potatoes guy and I’m a veggie and tofu gal so I leave it to the fellow carnivore to do most of his cooking.)

So I get lessons in how to hold Ruby, how to slice and fry the potatoes the way V likes them for breakfast, and how to make the spicy sausage or steak or burgers that he often eats for dinner. V has a huge appetite yet he’s also grown more finicky so things he’ll eat one week he’ll have no interest in the next. It’s frustrating and labor intensive to do all the kitchen prep needed. Then there’s the endless laundry – we joke that I’m intentionally bad at folding but I really do lack that spatial relations/tidy gene, so I load and unload and put away and leave the large folding table to T most of the time.  The fact is T is better at much of the day-to-day stuff needed for V, plus he’s bigger and stronger than him, which makes for a very different dynamic.  V can see right through me when I tell him to get up and get dressed for school, for example, whereas when T insists on the same things he responds.  

This morning he barely made it to school as he was insistent on staying in his nice comfy bed with his favorite blanket. Normally T could get him going but on my own he refused to get up despite my following the exact same routine T does. Finally by some miracle and shouting that the bus was here he finally arose and got dressed – he loves school so it’s just his way of being defiant with me. 

It’s made me anxious about T’s time gone in a way that is hard to admit. It helps to understand that V’s co-diagnosis, in addition to autism, is pathological demand avoidance – which as it sounds means he just won’t do much of what is asked of him. Especially from me. This makes for a lot of fear and dread and tension. He’s not intentionally aggressive yet he can have outbursts when he doesn’t get what he wants or is told to do something outside of his interest. I use the word resistant a lot but that might be a little too tame for a fiercely stubborn 20 year old.

This is why my sister and brother-in-law have generously offered to come down for the weekend to help me out, or at least offer moral support if V is in his stubborn mode and none of us are any help. I’m very appreciative of the company. Even with T here and involved, our lives are very lonely. On the one hand I long for companionship, on the other I’m hesitant to have anyone witness what our lives are like, the day to day challenges that most of you couldn’t even fathom. We have a good sense of humor most of the time – it’s an essential survival quality – yet we also have become acclimated to a lot of hardship.

The moments of grace still exist in mounds of dirt – somehow I had expected the balance to shift as V got older but new and different difficulties have taken hold from the ones that gripped us when I first started this journey. Yet perhaps I do have more grace, just as a matter of course, growing wiser and more accepting and especially more grateful for the littlest gifts as the years go by. The dirt and mess and chaos is no greater than it was, just different. So maybe the balance has shifted a bit.

Or at least time and experience can’t help but shift how we see things, as long as we choose not to shut down. Case in point: I just rewatched Enlightened, which as I’ve mentioned before is perhaps my favorite TV show ever.  Just like show creator Mike White’s recent and more broadly popular White Lotus, there’s a big heart amidst the seething satire. And Enlightened has such a lyrical, pensive and poetic quality to it. The protagonist, Amy Jellicoe, is insufferable and cringe-worthy in many ways; she’s also endearingly idealistic and good-intentioned.  And in the end, hope and the little guy break through the darkness and into the light of day and there’s the sense that change is possible. It’s the best sort of art: healing as well as entertaining, illuminating and funny and harsh and kind all at once. It seems odd to rewatch, reread or re-listen to anything when there’s so much new “content” all the time, but it’s nice to revisit creative endeavors, like going back again and again to a beloved book or city, discovering new elements and angles each time. To see how we’ve changed in how we react to the familiar, how we notice different elements with maturity and wisdom and the passing of time. 

And so I have no doubt T will have a great time in Portland, that he will enjoy his time alone – all too rare – and with B. I hope that here on this coast we fare well, yet even if we don’t we will get through it, flying solo for a few days.   

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