No, Janey's not awake. It's just me awake. I've been having a lot of trouble sleeping the past few nights. Thoughts and worries swirl around in my mind and keep me up.
Every day around 4, the new numbers come out for Massachusetts---how many new cases of COVID 19, and how many deaths in the past day. Today, the death number was 252----the highest yet. Somehow, that really hit me. I kept thinking---what if a tornado, or hurricane, or blizzard, or flood hit our state and killed 252 people in a day? It would be something we'd never forget, a horror, something we'd still talk about many years later, like the Worcester Tornado or the Blizzard of '78, weather legends in Massachusetts. It feels in this case like a terror happening off camera. We hear some stories, but mostly, it's unseen---deaths that are all someone's loved one, someone's parent or child or sister or brother, but that we only know as a number. It's terrifying.
And of course, I fear most of all that it will hit us. How could either Tony or I do the job of being Janey's parent without the other? Or what if Janey got sick? Or the boys?
We don't go anyplace. Not at all. Tony takes Janey for a car ride to no-where a few times a day. We play with her in the driveway. She hasn't set foot outside our house, driveway or car for over a month. She would not wear a mask. She wouldn't wear a mask when quite literally her life depended on it, in the hospital after her appendix burst. She touches everything---when I take her for a walk, she runs her hands along walls and fences. It is not safe for her to go out. Even outdoor places in this crowded state are filled with people, many not wearing masks. So we stay home.
Janey is still doing remarkably well being at home. She seems to be thriving. She watches videos, watches Tony cook, eats all day (luckily, she loves healthy food), listens to music, runs around in the driveway. Every day is quite similar, but she doesn't seem to mind. It's a low stress life for her. She doesn't really understand at all why we are home, and that is probably good.
A few times a week, Janey has a short, maybe 20 minute, Zoom meeting with her teacher or with her speech or ABA therapists. Janey tolerates this, and even seems to enjoy it for a few minutes at a time. However, starting next week it's going to be every day, for 2 hours. I have very mixed feelings about this. I know it's being done because special education students are not able to access the learning that other students are currently doing---online resources, worksheets, homework. They need direct teaching. But I can't picture Janey or most of her classmates doing very well with that much Zoom teaching time. It's not that she can't watch a video for that long---goodness knows she can---or that her teachers aren't doing a fabulous job working on ways to engage her---they are amazing. But it has to do with Janey just not quite getting it. She gets school. She's been going to school for a long time. She knows how that works. But someone on a screen talking to her and listening to her and expecting her to respond? I think in her eyes it's some kind of enhanced video, one with a cast of people she happens to know. It's fun for a few minutes, but not for extended periods.
However, it's not like there are really any other options. School can't be held in person right now, and everyone is doing the best they can with that. It's not easy for anyone. In some ways, it's probably easier for Janey than for a lot of kids. Her lack of understanding of the crisis is a protection from worry. Of course she has peers she likes at school, but it's not like I would have been at 15---absolutely crazed being away from my friends for this long.
What really keeps me up at night is how this is all going to play out long time. People seem more divided than ever. Instead of this pulling us all together, it seems to be pulling people apart. That's crazy to me. It's not a matter of politics here. A virus has no politics. But fear can cause divisions, anger, irrationality. I can handle that. But how I fear for Janey, and for all those out there who will always depend on others. She needs a world that is secure enough to leave people feeling they can help others. She needs a world that cares about people, not about the latest political feud or scoring points or getting elected or re-elected. I don't think the extremes on either side of any political rift really understand that. She literally needs someone to watch over her, and she always will. And I can't sleep, because I don't think the world sees her, or all those like her, when they bicker and argue while in one day, in one state, over 250 people died. God help us all.
Rarer in Girls...Life with my daughter Janey, who is twenty and severely autistic
1 comment:
COVID 19 has hit the northeastern states harder than other parts of the country so that may explain why there's such a difference in experiences. Massachusetts has the 4th highest death rate of all the states. We live in Massachusetts but far enough away from Boston that it's difficult to see infected people (they don't wear signs) or we just don't know enough people here as non-natives to the state. My wife is an RN who has treated coronavirus patients and she thinks the public doesn't know what it's like to be on a ventilator. They sedate the patients to suppress the gag reflex.
Lately, the remote learning is all the education my ASD daughter gets. The ABA therapist doesn't come to our house due to my wife being exposed to coronavirus patients. We have a new therapist coming today.
I don't think remote learning works well for kids in special education and I've learned a new appreciation for what her teachers do for her. We aren't cut out for homeschooling. My other non-ASD kid sees no point in more remote learning until sometime in June. They both were reduced to tears over the homework. I think they should drop the schooling until next fall
The other big deal is the economy dropped into a hole. People can't without jobs and it has affected us as well. I kind of gave up looking for a job for now. That's a first for me.
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