Remember a while ago when I wrote that A likes to go to his old religious school premises, sit in the car, and say prayers, to replicate some sense of normalcy during the shutdown? And that the image of him simulating communal experiences is the most hauntingly accurate symbol of what a sham inclusion often is for autistic kids?
He has managed to create a whole world in the car in the last few months. After his virtual “learning” is done for the day, he and his dad go for a long drive. They don’t run too many errands together anymore, since A has trouble keeping a mask on, and we don’t want him exposing anyone else to his exhalations. They drive. A lot. And during those drives, I scramble to finish tasks which are difficult to get done when he’s home.
All that long haul driving places wear and tear on the car. The car needed servicing last week, and my husband spoke to the auto repair guys, who know A; they told him to drop the car off in the dead of night, and they would work on it first thing the next morning. After all, the car would be needed for the next afternoon’s jaunt!
We thought we were being so smart. The car dropoff was a covert operation. We went to bed feeling so organized. Then we slept about four hours…
We were awakened by bloodcurdling screams. A had looked out the window and discovered that the car was missing. He was inconsolable, would listen to no explanations. My husband led him, sobbing and bereft, to the other car, drove him to the auto repair shop, and showed him the physical proof of the car parked there. A grasped that the car needed some fixing, but refused to abandon his vigil. They stayed there for a long time, and eventually, my husband was able to drive home, but A wouldn’t leave the (less desired) car. He stayed there in our driveway, refusing food, drink, bathroom trips, and distraction of any sort. I managed to get some sustenance into my husband. It was a boiling hot summer day. The neighbors were having a fallen tree cleared, and the machinery was making a dreadful racket all day. I would not have made it through all that—SEVEN HOURS of keeping A company in that horrible heat and noise. By any standard, that is some really amazing fathering.
Whatever ideas you may have of how we could have done better, I guarantee we tried them. Just thinking about that day exhausts us.
Eventually the car came home, and the day carried on. Just that every activity was pushed by many hours. And A likes all the boxes checked about how the day is supposed to be spent.
Evening prayers became night ones because of the delay. They were parked outside the school, reciting their slokas, when a cop approached the car, wanting to know their business there.
My husband explained the deal to the cop, who softened up considerably when he understood the autism ritual piece, and exchanged hellos with A.
For me, though, the fact that it happened shattered my last nerve for the day. We have spent MONTHS simulating a normal life for a high needs teenager. Every day has been filled with increasingly particular rituals, zero external intervention, and we are shadows of our former selves. There could not be a purer motive in going somewhere than for an autistic boy to pray away his anxieties about the total loss of structure in his life. And it attracted the police.
Do you know that a perfect day for us these days is when no one helps us? Do you understand what that says about how officious, intrusive, and utterly useless other people are to our present circumstances? We need schools to be safe to open, so that trained people can work with A again, but they are not safe. Because people can’t stop gathering for other reasons. And they don’t hesitate to tell us how, if we express any frustration about their lack of precautions (like masks and distancing), we are impinging on their freedoms, and opening the door to greater perversity, i.e. delighting in subverting what society is asking of them. People have no issues with finding small and big ways to flout the precautions, but they don’t see a clear connection to how much it pushes families like ours further into the recesses of our own lives. The more they ignore scientific and medical advice, the longer we go on like this. But, you know, summer.
If a cop interacting with an autistic kid warms your heart, that’s nice. But as a member of a family of color, I am unenamored of the image of a cop walking up to the car that contained my husband and my son. I am thinking of all the recent reminders that the police are there to protect property, not individuals. So the issue was one of being parked on school premises late at night, which, even if understandable, is chilling for us even at the best of times. If you cannot picture a scenario where literally anything might have happened to two of the people I love the most, you can stop reading now. Your privilege is blinding you.
Our right to be places is always questioned. Nothing new there. Even without a pandemic, autism families are routinely rebuffed in our attempts to create a community experience for ourselves. We have to be content with fragments.
I am going to say this bluntly, and you can have your feelings someplace else: even if we survive this, I don’t want a normal life with any of you. I want better. And if you can’t deliver, don’t pretend to care about how we manage. We are not okay. And we are looking at months more of this stasis.
You can love someone dearly, and still be overwhelmed by their needs. A is not the problem. The lack of access to supports is. I don’t have any poetry in my soul tonight, so that’s all for now.