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My coronavirus prep includes protecting my disabled child

Coronavirus planning is more difficult for families with disabled children.

Empty shelves and signs indicating out of stock items at a grocery store in Kirkland, Wash. on Sunday, March 1, 2020. (Jovelle Tamayo/For The Washington Post)

Late on Monday afternoon, I swung by a Costco Business Center, which is just like any other Costco, except that you can’t buy liquor, prepared foods or prescription drugs. But that was not the cause for worry; I was there for pretzels to prepare for a pandemic without panicking.

I’m the father of an autistic boy with Down syndrome. While he is not medically fragile, his diet is specific enough to the extent we can’t just easily roll with the societal disruptions that coronavirus brings and expect him to cope in the same way a neurotypical kid does. So, I went to Costco.

My 13-year-old son starts each day with a bowl of Quaker Maple Brown Sugar oatmeal, then a bowl of Honey Nut Cheerios. At lunch he eats a cup of 2% cottage cheese — the brand here matters less than the texture, but some cottage cheese is too thick or salty. He eats Snyder’s Snaps square pretzels, blueberries of any size or ripeness, five fig bar cookies but not Fig Newtons (he prefers Matt’s), and Craisins. After about half a year of practice, he now reliably eats green grapes if you cut them in half, the slicing necessary to give him enough textural input in his mouth to confidently bite. Dinner is a bowl of Barilla penne pasta, unsweetened applesauce and a variety of other things we’re working on — bananas, whole soft-skinned brown grapes, peanut butter and either Ritz or graham crackers, yogurt, one of two specific brands of soft oatmeal-raisin cookies.

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This is a diet, supplemented by lots of milk, apple juice, multivitamins and iron, that we’ve built as a collaboration over the past decade as the foods he ate collapsed down to just one or two items (mostly cereal) and before they gradually expanded again. Although my son is increasingly interested in trying new foods, the process of finding out whether something is acceptable, let alone desirable, takes months (the jury is still out on mashed potatoes).

But this routine is disrupted if stores shut down for a few days or weeks. Social distancing, as the medical professionals are calling it, seems like a reasonable response to restrict the spreading of disease. But even as I roll my eyes at folks making a run for toilet paper and K-Cups, I’ve realized that for us to distance successfully, my family needs a large supply of those Barilla noodles.

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To us, parenting an autistic child means doing everything possible to learn how he experiences the world, then encouraging his autonomy and agency, even when it means listening to the same music repeatedly, and making sure that he’s surrounded by routine and predictability, with all change telegraphed and practiced. Besides, you can’t literally make your kid eat.

This structure, which we’ve been able to achieve only through considerable luck and privilege, requires us to take extra precautions during unstable times. The spread of covid-19 brings a considerable risk of death and much more serious disruptions, but that feels harder for me as an individual — as a dad — to control.

The best thing my wife and I can do is make sure our home is as ready as possible. We are not preppers. We have bandages and antibiotic ointment but have never put together a robust emergency kit. Minnesotans don’t empty the stores at a little bad weather, after all, but the virus feels different. The news from Japan that they had shut down schools prompted me to think hard about how to be responsible parents during a potential public health crisis. We didn’t want to be part of a panic, but we also simply cannot adapt easily to support my son’s dietary needs in the face of similar closures in the United States, a decision that we might make to self-quarantine in the case of infection, or global supply chain issues threatening the restocking of grocery stores.

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Those stores are going to need restocking. My wife went out to Target on Saturday with a slightly longer list than usual and was shocked to find cans of beans, fruit and bags of rice nearly gone from shelves. She came home with a lot of pasta, some shelf-stable milk and cottage cheese that we are going to freeze. We put in refill requests for the daily medicines that both adults and my son take, stocking up there as well, and I made a list for Costco. If the stores close, if a pandemic panic begins, we don’t want to go shopping. But we want to support our son’s needs.

Lots of folks in disability communities — including disabled adults and caregivers — know how thin the line is between stability and disaster. We think we’re as ready as we can be. And if the disease isn’t that bad and the stores stay open and the shelves stay stocked, then at least my basement is full of pretzels.

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