I know a lot of you are freaking out over COVID-19 right now. I see my middle-aged buds with no mitigating health issues making trips to Costco like Jesus is coming. I see you. I know something about panic. I’ve watched helplessly as my autistic daughter panics over seemingly nothing for years. She has complete meltdowns over the several thousand daily variables that haven’t combined in what she considers acceptable for one reason or the other. There is a long list of ever-changing objects and situations in daily life that cause her anxiety. For years, the automatic opening door at our Kroger grocery store, walking past pine trees or hearing the unmistakable scrape of dog claws against the sidewalk triggered her fight or flight reaction. Sometimes I know and can attempt to mitigate or redirect her but it turns out that we live in an unpredictable world of conifers, automatic doors and defensive dog owners, “Biscuit would never hurt you….” Sure, lady. Keep telling her that.
My now adult daughter still has her phobias, her comfort items, her rote unbreakable routines that try to make order of our chronically disordered world. When we were on an airplane this week during the COVID-19 outbreak, I was armed with anti-bacterial gel and wipes and Kathleen was carrying her parachute. It’s an item she brings with her anytime she travels, a comforting reminder of her treasured days in preschool. A time of life that is seared into the minds of so many autistic adults. The TV shows, the toys, the teachers in Pre-k are always a sweet reminder of a time when life made sense. As far as comfort items go, a large parachute is as good as any and may have come in handy on that plane…. but I don’t think she was worried about crashing.
I know she’s not worried about COVID-19. She’s worried that her Wi-Fi will go out, that the power will go off suddenly, that she won’t have a Pop Tart available for lunch, that the pool will be closed or the hot tub will not be working at our local YMCA and about 178 other daily things. She’s not worried about the truly scary virus that due to her somewhat controlled epilepsy actually threatens her life. She has no less than five caregivers in and out of her apartment daily who make her food, bathe her, brush her teeth (her fine motor skills make it difficult for her to apply enough pressure to wash her body and brush her hair), and administer some of her topical medications daily. Will she ensure that they have washed their hands? Nope. It’s not on her list.
I’m aware that some developmentally delayed folks are very concerned about COVID-19. I work in the field and met a person this week who showed me lots of maps and charts and graphs that they are keeping track of on their iPad and told me in great detail the numbers of deaths both globally and in our state. I was visiting a day support facility where I could only imagine how frightening the staff members look now that many of them are (uselessly) wearing masks and how offensive the smell of disinfectant wipes is to some more sensory sensitive folks. I meet a lot of adults who have horrible associations with doctors and hospitals and the masks and smells trigger memories of times that they were helpless to someone who was going to “hurt” them with a needle. I always remind their staff…but what can they do? They aren’t taking off those masks I’m pretty sure.
I’ve had my share of panic. When my autistic daughter was 6 and my son was 3, I took them on a walk at the local metro park. I was feeling adventurous, so I took a new trail. About a mile into this walk, it became clear that I had picked the wrong trail. My very hyper son (who has low vision) was all over the place, oblivious to the steep cliff on one side and the poison ivy on the sides of the trail. I had no idea how long the trail was and decided to backtrack, only one problem, my autistic daughter was in a stage where she refused to backtrack. She sat on the ground and screamed. Now, a six-year-old screaming for her life is a little different than a two-year-old…. it’s really fucking loud. Thankfully, she was little enough, so I picked her rigid body and carried her. She was kicking and struggling to get free and I was sweating and constantly yelling for my 3-year-old to “SLOW DOWN” and eventually we ran into two women who saw that I needed help. One woman walked with my son, lightly and sweetly redirecting him on the trail and the other woman just walked with me calmly and completely ignored the tantruming wilder beast I was carrying. This stranger bailed me out, truly altruistic and simple but her care meant everything to me. It was a bad situation but my son never fell into a ravine, and my daughter who was still in diapers at age 6 didn’t poop and I could have twisted my ankle because although I don’t remember what shoes I was wearing, I’m sure they were not safe.
It’s hard to take care of people. We’re helpless to so much. Cars, dogs, pine trees, non-looping metro park trails, plane crashes, broken hearts, and viruses. I’ve been dealing with almost daily panic mode in others for well over 20 years now so take it me from me, it can always get worse.