“Introduced first in 1927 by the German physicist Werner Heisenberg, the uncertainty principle states that the more precisely the position of some particle is determined, the less precisely its momentum can be predicted from initial conditions, and vice versa.
“In quantum mechanics, the uncertainty principle (also known as Heisenberg’s uncertainty principle) is any of a variety of mathematical inequalities asserting a fundamental limit to the precision with which the values for certain pairs of physical quantities of a particle, such as position, x, and momentum, p, can be predicted from initial conditions.” – from Wikipedia
We were all living with uncertainty well before the coronavirus. Californians have long accustomed ourselves to the idea that an 8.0 earthquake could come along any minute and destroy all that we hold dear. Wildfires, hurricanes, tornadoes, floods, school shootings, car accidents, blackouts, a surprise death in the family: we’re all aware of these lurking possibilities. The pandemic, and to some degree the protests for racial justice, represent less of a change in kind and more in degree: not that we don’t know uncertainty, but that this is much more uncertainty than we’re used to.
Welcome to my world with autism. I’m not saying that autism + coronavirus = double uncertainty; I’m instead saying that the last decade of daily adjustments for autism has prepared me to live with the uncertainty that I now see people feeling for the first time.
Where is our stuff? You know how you think gremlins move your car keys and such? We really have a gremlin! And we really have trouble finding pens, glasses, keys, books, papers, silverware, chargers…imagine baby-proofing your house, but having to lock up every single thing, including the highest shelves.
How did this start bleeding? I’ve wondered this recently at Dar’s belly button, his finger, his face. He can’t tell me. Nor can he stop picking at such wounds, no matter how much we dress them. Can’t put a cone of shame on Dar, so…the wounds keep bleeding.
Where does it hurt? We’ve been working on this for years. We try to touch Dar’s arm, or have Dar touch his arm, and then bring his finger to his language-board icon that says “arm.” And leg, and tummy, and foot, etc. But he never really gets it, and so when he’s crying in pain, it’s even worse…no way to know. Then, just the other day, a new supervisor suggested we put ice cubes on parts of Dar’s body and try the process again. I consider this a great idea! Why did nobody ever tell us this before? Why didn’t I find it on the thousands of emails, trainings, videos, and so on, that me and every other parent of a severely autistic child has watched? Which leads to…
What’s the next idea that might change Dar’s life for the better? See just above.
When can Dar go to camp? Granted, every other parent of every other kid now has this question. See, we have so much in common!
What kind of job can Dar do when he grows up? How can Dar be useful to society, ever? Your guess is as good as ours. Subject for medical research?
When can Dar spend time in some other house/home/facility for people like him? Other parents of severely autistic children have arranged this sort of thing way before their kid turned ten. It didn’t seem that urgent for us pre-pandemic, because he spent school days at school, and then weekday afternoons with his therapist. But after three months of 24/7 Dar…yeah, he’s exhausting, all right. Of course, the conditions that make us interested in a break are the exact conditions that make it almost impossible to find one.
Where will Dar live when he’s, say, 30? I know…you’re wondering this about your own kids. But I have faith in your kids! I think they WILL be independent by then. I have about a thousand reasons not to feel the same optimism about Dar. So basically wifey and I are stuck with him forever. Which seriously circumscribes and debilitates our options. It would almost be like living with some COVID-like disease in the society forever…except that the fatality rate is a little harder to dismiss (say, death occurs to 20% of the infected).
Hard to imagine, right? Or maybe not so hard.
Maybe there’s a comparison there to the uncertainty of living with society-wide discrimination – female, BIPOC, what-have-you. I’m not being so bold as to assume that my experience compares to that of, say, a trans black woman, just to say that if there’s a positive to uncertainty, maybe it can make us relate to each other a little more.
Even before the pandemic, I recognized, but never bothered to tell this blog, that one reason I liked going to movies is that it felt, feels, like a harmless exertion of control in a world that often feels out of control. You see the movie time – say, 7:30 – you plan out your schedule, you get in a car, you park, you walk up to the box office, you buy a ticket, you sit down, you watch it, you leave and go home. Even if the movie is bad, the activity itself feels like a minor victory. Going to a restaurant can also be like that. So all these minor ways of reducing uncertainty are lost to us for some amount of time that is…uncertain.
I think I rarely admit to myself that Dar is one reason I took up scuba diving in the last few years. To find another place of uncertainty and make it certain, at least for a while.
Wife and I are now contemplating some sort of nearly-hermetically sealed vacation (within driving distance of course) sometime in August. Ain’t everyone? Aren’t we clinging to that?
Despite that question, I am not here soliciting opinions or asking for advice, only relating my personal experience. You can take it or leave it. Whether or not you do…that’s a level of uncertainty to which I’ve long been resigned.
In other news, I’m certain Dar loves baths. This is a photo of him getting his hair washed.