I woke up this morning and thought "Great---another day". That's not a positive thought, and of course right away I told myself that I shouldn't feel that way, that just being alive and in a warm house and with food and health care and a family around me should be enough. And it should, and I know that, but boy, is this endless pandemic making life with a teenager with autism tough.
Janey hasn't been happy. School is complicated and off and on, but hopefully she'll be going more regularly soon. However, this past week was vacation week. Which did make us all laugh a bit, and brought up the inevitable line "vacation from what?" In addition, it snowed off and on for days, never a blockbuster storm but enough so that to get out of the house required shoveling, and that any outdoor activities were not really possible. Janey is bored. She has had a life that's been incredibly limited for the past year. We all have, but she has far less resources to keep herself happy and entertained. She has no interest in toys, no hobbies, no ability to text friends or video chat or do crafts or cook or do just about anything that could keep a teenager happy when stuck inside the house for a year in a row. We try, of course. But even trying something as small as getting her to watch a different movie or TV show results in screaming, in arm biting, in anger.
The list of what Janey likes to do at home is very, very limited. She likes to eat, to watch a very small list of shows and movies on her iPad or on TV, she likes to have Tony take her for a car ride and she likes to snuggle on her bed. Except for the endlessly repeated viewings of Toy Story 2 and 4, the activities require our help.
Snuggling is a ritual---we have to stop whatever we are doing, go to her bed with her, watch as she puts a blanket over herself (getting her to do that on her own took months of work) and then lie down next to her. We are supposed to stay there for about 30 seconds, then she has us get up. About 5 minutes later, she gets up herself and it all gets repeated. If we refuse to snuggle, she gets hysterical, screams, bites her arm, pulls our arms, cries...and it lasts however long we refuse. If we refuse all day, it lasts all day. Needless to say, we give in after a while. It seems like a small thing, but it makes it impossible to do anything without constantly getting up and completing her ritual.
Car rides---her favorite thing on earth. Every morning, from the second she wakes up, she asks for a car ride. She mixes thing up a little by asking sometimes for "clothes on" (whether her clothes are on or not) or "shoes on" or "jacket on". We explain, as patiently as possible, why a car ride can't happen that very second. Perhaps it's because it's 2 in the morning, or because the car is covered with a foot of snow, or because we just got back from a two hour car rides and we are exhausted. No reason works, of course. If she wants a car ride, she wants a car ride. The car rides are rides to nowhere, rides around routes Tony has figured out over the years. They listen to music, which depending on Janey's mood has to either be the same songs over and over or each song quickly advanced to the next song when she says "Music, please!" In a pattern that you might notice, if we refuse, there is screaming, arm biting, hysteria---not always safe in the car.
Eating---Janey loves to eat. Luckily, Tony loves to cook, and he's wonderful with her eating. She eats a great variety of foods, mostly healthy. But her greatest love is salami. She eats salami completely without a stop button. We usually get her some good salami every day---we are trying to get only ones without a lot of additives or MSG or dyes or so on, and they are pricey. But one salami pack never makes her happy, and much of the day is spent hearing her ask for salami, us telling her we are out of salami, her going to the fridge to rummage and see if we are lying about that (we aren't), her being angry there is no more salami...you get the picture.
And TV watching. Janey used to watch more of a variety of shows, but this past year, she watches mostly Toy Story 2 or Toy Story 4. We know them both by heart. We are so tired of them we can barely take it. Occasionally we can kind of force another show---sometimes Courage the Cowardly Dog, Penguins of Madagascar, Angelina Ballerina, Kipper, Coco---but those are being seen less and less. If anyone monitors our Disney Plus viewing, they must be truly confused as to why anyone would need to watch Toy Story pretty much around the clock.
|A pretty good movie, but boy, are we sick of it|
We try hard to make Janey's life more interesting. We try to dance with her, read to her, play toys with her, have her help us with things like snow shoveling or laundry or sweeping the floor. We can, with much trial, get her to do these things for maybe two or three minutes. Then she is done, and nothing on earth can make her do them longer.
In normal times, we are able to mix things up. There is school, there are car rides that actually go someplace, there is outdoors, even if she holds a device for watching her shows, there are stores we take her into, there are trips and there are visits and there is just regular life, or regular life pre-pandemic. But the year of not being able to do these regular things has resulted in Janey doubling down on the things that feel safe and familiar and comforting to her. I truly worry that it will take a very, very long time to get her back to where she was a year ago, if we ever, ever do.
The toll on Tony and me---the noble, long-suffering, perfect autism parent model I sometimes feel we are all expected to follow tells me that shouldn't matter. But the truth is---we are not doing well. We are really not doing well. We are a mixture of bored and frustrated and tired and concerned and overwhelmed. This feels endless, and at times, impossible.
Schools reopening, slowly, will be a help. The vaccine distribution, glacially slow and poorly done here in Massachusetts, will be a help if it ever gets going. People doing whatever needs to be done to get this mess under control will be a help. But I feel for the long term consequences. I fear for all the Janeys in the world. I fear that it will take many years to recover from this horrible year. I am fighting my impulse to be hopeful and positive, to say I think some good will come of all this, to soften what I am really feeling, but I won't. I will just say I hope you are all holding on, and healthy, and that you know you aren't alone.