2020 as how (may be) my nonverbal autistic sees it…..

Everything I love is soft and silent,

My cat, the morning, the end of day,

Even the moon in its way

Everything I love is soft and silent,

The water, the forest, the snow at play,

Even the mountain in its way

Everything I love is soft and silent,

The sun on the sand, a rainy day,

Even the wind in its way

Everything I love is soft and silent,

The grass, the brook, the leaves at play,

Even you in your way.

James Kavanaugh

I turned to look at her face next to me. My daughter had been up for who knew how long. She stared at me with vacant eyes for a second and then her eyes lit up. It was Wednesday and we normally start the day with her occupational therapist, then go to Dunkin’ Donuts for hash browns and coffee and then get back home by about ten o’clock, ready to get started on our school stuff. My kids are homeschooled so it’s tons of fun including coloring while sitting under the sun on the deck, jumping in the trampoline for sensory breaks or walking around the neighborhood on impulse.

But COVID took our routine away. The one predictable thing for my kid has been tarnished so badly by a pandemic that my heart aches.

I watched as the light in her eyes went out a little. She knows that for the past eight or nine months we haven’t been to any of her therapists. We haven’t had any grocery store trips. We haven’t taken any of our planned vacations and trips.

I don’t know what she thinks as she is able to speak very little. But I can see how she knows that her adults have failed her. I can see the disappointment and the despair seep into her routine. She is used to a different life. She has always had a very fast and happening life. Part of the reason why she has full days is because her parents have full days. Her parents have full days because she has full days. It’s all intertwined.

Except it all unraveled with 2020. First she stopped seeing her therapists, then the trips to mall stopped and before we knew it, we were getting refunded by airlines for all our planned trips.

I can see her and her brother struggling everyday with keeping their good humor about them when they get on the swing set that is such a condensed version of what they get in the big community playground. They try to pretend that they like being indoors or going out for a walk and staying away from friends and neighbors. They try to keep their whining to a minimum when I leave them in the car with their father as I rush inside the grocery store and pick up the bags that have already been packed for me.

It has been surreal and I hate it all. I have rarely hated anything but I’ve hated COVID. I know what a lot of people would advise.

“Be grateful! You’re so blessed! Look at the kids who have nowhere to sleep tonight”.

I acknowledge it and know how much I have been given.

But I know what my kids are thinking. They can’t wait to trade it all for a carefree walk down a grocery store aisle, debating the snacks they’d like, running over to some new flavor of Lays or Pringle’s and looking at me with puppy faces so I get them their stuff.

I know my autistic is done with it. She can tell that her adults have no control over it because of various mistakes and delayed responses. She knows that there is no plan for her because we have consistently been behind the eight ball (and have also dropped the ball on occasion). She has lost faith in ever going back to what her normal was. She has somewhat adjusted to the new normal, as some like to call it, but refuses to accept it as her normal.

In a world where nothing makes sense, my kids live a life of confinement and they can’t even complain about it. And I can’t either.