Thursday, March 12, 2020

Explaining coronavirus-cancelled activities to children with disabilities


Max was supposed to have a bowling trip and a sleepover at his school this Friday night. He'd been looking forward to it for months. This weekend, I told him that it might not happen, but he didn't want to believe me. Tuesday, it got cancelled. I told him when he got home from school, expecting the worst.

Me: "Max, I'm sorry but there is no bowling trip on Friday."

Max: "Sleeping over?"

Me: "No, you're not sleeping over."

Max [pauses, then responds]: "It's OK. Sick!"

As in, Max did not want to get sick. I was floored that this hadn't been such a big deal. I was proud of how mature he was being.

In the scheme of concerns parents have in these coronavirus times, figuring out how to let a child know an activity has been cancelled may seem like small potatoes. But if you're that parent, it's not. Children and teens with intellectual disability may not understand what is going on. They may have over-the-top reactions involving tears or total meltdowns. Then there's the matter of finding ways to fill the time of cancelled activities.

As hard and meltdown-y as it may be, it can help to give a child a heads up that things may not work out. Max didn't want to think it was true, but even so, I planted a seed. It might help to have a visual aid to explain coronavirus, as necessary—I like NPR's coronavirus comic that you can print out and fold into a zine. It's also good to offer an alternate activity, to soften the blow. I promised Max I will take him bowling when it's safe to go, and challenged him to an air hockey tournament at home this weekend, with a prize being an L.A. t-shirt since he's bent on moving there.

Children and teens with autism can pose different challenges, as a friend with an autistic teen son is experiencing—and she's hoping for some crowdsourced solutions. They live in Boston, which every April celebrates Patriots Day to commemorate the opening battle of the American Revolutionary War. There are reenactments, pancake breakfasts and a parade. Every year, their Best Buddies chapter makes a float and kids ride on it. It's more than likely to get cancelled this year, and she has broached the topic with him. Her son, who talks about the event non-stop all year long, is not having any of it. He'll tell her that it's not raining, there will be a parade.

"But it's not cancelled, there will be a parade," he'll say. And then he'll repeat the same throughout the day, again and again and again.

If you have ideas that help when a child perseverates in this way, please share here.

3 comments:

  1. What we've been worrying about is, what happens if we go into quarantine? How do you explain to an autistic kid that suddenly all going out has stopped? And what if he catches it but other members of the household don't? In situations like that they generally recommend keeping the infected person separated from the rest of the household, but how??? There's no way he'd understand that he can only go in certain parts of the house or that he can't hug his siblings :-(

    As far as your question re cancelled events, I'd suggest reaching out to the organizers. It could be that they have a game plan in mind to do things on a much smaller scale or to postpone parts of the event to a later date. Once you know what's going on you can try to prepare him for the changes to come. You can also try to duplicate some things on your own - not the float, obviously, but you can take him out for a pancake breakfast, maybe with one or two other families that he loves seeing at the event. This way at least part of his routine is salvaged. - Alyssa

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  2. We have also flagged with our autistic child that school's athletics carnival is likely to be cancelled due to govt policy on gatherings of more than 500 ppl (Australia). Although the prospect has distressed her, we keep showing her other events that have been cancelled to demonstrate that this is nation-wide, not merely her school. The school has been more rigorous in handwashing regimes and we have had ongoing, age-appropriate discussions about Coronavirus. She is still likely to meltdown when it's confirmed this week. We prepare as much as possible and be there with love and support when disappointment strikes.

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  3. You have an air hockey table at home?!

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Thanks for sharing!