On World Autism Day I took my adult autistic daughter to get a cystoscopy. The fun, it never ends. I’m not going to go into the myriad of probably stress related medical issues that led to the procedure but suffice to say she has averaged one medical appointment a week in the past year.
The only good thing about Covid was that the world got to experience the fear of the unknown, even though we have the illusion that we know what we are dealing with in this pandemic, we’ve all had a lot of question marks in our lives. When will I go back to my office? When can we travel again? Will we need to get Covid boosters every year? When will a vaccine be developed for kids? Wasn’t the apocalypse supposed to be more dramatic?
In my whole life, my only true pet peeve or characteristic that I detest in humans is smugness. That feeling of absolute certainty that one knows what is happening in any given situation. Even though those people did continue to readily show themselves in the past year, for the most part we collectively gave those folks the side eye and kept it moving.
Since having my first babies, my twins, over 25 years ago, I’ve been convinced that you can’t really control anything in this lifetime. Not that you can’t hedge your bets or that it isn’t worthwhile to work towards something but that your expectations can destroy your happiness.
I don’t know if you are personally acquainted with an autistic person, but they don’t live well with the unknown.
My daughter has a very bad history with managing changes in routine. In fact, she can not attend a day support program because the transportation company often switched drivers and vehicles, she considers that untenable. When her Apple TV changes the Apps that are offered or when they switch the order they appear, it can ruin her day. So when our pool trips unceremoniously ended in April of 2020, making it the first week in a few decades that we didn’t go to the pool AT LEAST once a week, she was upset. And it was odd, she didn’t trantum or hit me but she did rip off a toenail and cut off all of her hair. What can I say? We all manage stress differently. Aside from some light property destruction, a broken window and a few 3am screaming and front door slamming fits, she hasn’t seriously injured anyone which is actually a huge relief. During times of turmoil throughout her life, she has attacked people. Thank god she is a white woman…I doubt the police would be as tolerant with a black autistic man.
So in short, I just can’t give a shit about Autism Awareness Month this year.
Maybe next year I’ll care. Next year when I’ve had a chance to reflect on how ridiculously lucky I have been to be able to work from home, how fortunate I am that none of my immediate family members had Covid, and when I can attempt to process the loss of friends and even the loss of people that I don’t even know. I think about my son who is also on the autism spectrum and visually impaired and has to use public transportation to get everywhere and how glad I am that he never got sick even when he continued to sell his plasma for money (because it’s REALLY hard to secure employment when you have a disability).
I also spent every single minute of the last year burning candles and thanking the goddesses and Jesus and G-d that my daughter’s dedicated staff continued to literally risk their lives for $11/hr. Lot’s of them had absolutely no choice and needed to work and given a chance would have hunkered down at home like I was able to. But they showed up. They wore masks around her at all times and kept her apartment IMMACULATE.
It’s been a rough ride for everyone with autism this year. I know I had to step up and give more and I complained every step of the way but, I did it. Because if autism has taught me nothing else it’s that life is much easier if you can flex, just a little, to make other’s lives better,