I have struggled, am struggling and will continue to struggle with keeping my adult autistic daughter at her apartment during this COVID-19 outbreak. She is unable to attend any sort of day program (which are all closed due to the virus, anyway) and instead fills her days with a meticulous calendar of events all of which have been cancelled. Over the years we have often directed her to “Look at your calendar…” when she asks as she often does about what she is doing next. She is route and routine and this COVID inspired change of schedule is making her, and many of her autistic colleagues, more than a little undone.
We tried to warn her that her sacred space (the YMCA swimming pool) could close so when it did, my husband and I notified her staff immediately. This was so they could help her warmup to the idea. For her whole autistic life, the pool closing has been a nightmare. Life, as we all know, is imperfect and pools do indeed close due to weather or maintenance or the occasional swim meet. We’ve faced these grave injustices with brave faces and soldiered on usually with the help of America’s most insidious of all pacifiers, the trip to McDonalds. She typically goes to the pool three times a week and she is already battling medication and lifestyle induced obesity that three weekly trips to McDonalds will not help.
There are no good choices here folks.
Yesterday I went to her apartment which was a huge break in her routine to ensure that her Face Time app was ready to go should we get what I believe to be the inevitable “stay at home” order. She was not happy to see me and didn’t understand why she hadn’t gone on her scheduled trip to the zoo. The trip was put on her calendar last month when although we *knew* about COVID-19, we didn’t really know and certainly didn’t anticipate everything closing. When I saw her, her teeth were dirty, she was wearing a nightdress that did not fit but she loves, and her staff was nervously making her dinner. Her staff knows that breaks in protocol like an unexpected visit from me are the types of things that can throw her into a tailspin complete with screaming, hitting and kicking staff. I felt very bad for her staff but those teeth…. ugh…don’t they NOTICE?!
I ensure that the staff understand how to get facetime on her iPad, and they notify me that she needs a few things from the store. Like many places they have been short staffed since the virus. Fine, it’s best to run out now and get what I can. I ask if she has any hand sanitizer and the staff tell me that no one has any. Now, when you have a disabled child, even an adult one, you usually are ready three weeks before anyone, supplied to the gills with any essentials that any human being could need. I, however, have never been that mom. For some reason, in this uncontrollable time when everything is uncertain, I am sure that I can get hand sanitizer.
The smart thing to do is to call the stores ahead of time, right? Why waste a trip and risk exposure or possibly exposing others if the store doesn’t have what I want? Well, the stores that are answering the phone either say no hand sanitizer or I get a recording that basically says “don’t ask the staff about hand sanitizer, lady” and so I go from store to store, stupidly risking exposure or exposing others because I want to make ONE FUCKING THING RIGHT for my kid.
No hand sanitizer. I call my husband in a daze…
Tim, there is no one around the streets and there is no hand sanitizer, not even a tiny tube.
How about isopropyl alcohol?
Honey, he says, washing hands is much safer anyway. Is he lying? Does he know? Maybe if I just go to one more Lowes or Rite Aid or Kroger….
Then it hits me, I’m acting like a crazy person. I need to just buy extra hand soap, some snacks for my daughter and get my ass back home where it belongs.
I go back to my daughter’s apartment. She doesn’t care about the soap and the bleach spray I managed to nab at a lone 7/11 in the middle of nowhere. She doesn’t want to Face Time. I manage to get her to Face Time her far away twin sister and ask the Amazon echo dot (more technology that she doesn’t use) to play some Avril Lavigne and we have a short but spirited virtual dance party. My daughter is done with me, she wants to watch Disney + which is the only thing she likes these days. I leave to the sound of the Many Adventures of Winnie the Pooh for about the 75,000th time and I instantly miss my three kids so much.
I hear lots of people calling the social distancing “a new normal” which makes me laugh. That’s a term they use when you get cancer, when your parent dies or when you have a child born with a disability. Welcome to my world, n00bs. Nothing really new here. Many people with disabilities must rely on staff to go anywhere and can’t be unaccompanied in the world ever, many their whole lives long. Even now, when I and my husband have the luxury of being able to work from home, there are caregivers working in the apartments and group homes of folks. They can’t do that from home. They work for people who rely on them to make meals, brush their teeth and to ensure that they have lifesaving medication. I’m sure a lot of them are scared right now and they should be, I hope they are, and I hope that they keep my daughter safe.
It takes a lot of faith in others to get through the day. Faith that some rando won’t crash into you, faith that your employer will put that check into the mail, faith that your physician has made the right diagnosis. There are absolutely no guarantees in life that people will do what they should, I know yesterday I should have not gone to 14 different stores to look for hand sanitizer. How bad of a move that really was remains to be seen.