Susan's Blog

Monday, May 18, 2020

Susie’s Little Day Program

I was caught off guard by the Coronavirus just like everyone else. I look back now in horror at all the times I sat right next to people — even a sneezing guy on an airplane — and wandered around blithely without a mask. At the beginning of March, though, it all changed. I was picking Nat up from his day program on a Thursday for a doctor’s appointment, but while waiting for him to collect his things, I noticed how few people were in the room, and how few vans there were outside. I asked Paul, his dear friend and case manager, and Paul said that people were not coming in because of the virus.

Suddenly it was real in a stomach ache kind of way. What the hell was I thinking, sending Nat in every day when this new bug was actually killing more people than the flu? “Nat,” I said to him in the car, “You are not going back there for a while.” And I explained to him about the “sickness” that was very bad, and how we had to be really careful from now on. I told him that he would not be going back to his group home for a while either.

Nat was okay with it, and so was I, because we did not realize how the quarantine would stretch on and on. So for the first week it was all kind of like a sleepy vacation, and my husband Ned was working from home, so we just kind of “sweetied around” as Ned calls it. There was no schedule at all; I went on bike rides and cleaned up my yard, uncovering green shoots everywhere, imagining the colors that would soon be popping out of all the trees and the ground. Nat and I rediscovered our love for baking, and I was proud of myself for being able to stay away from the sweets and continue my long streak of success on Weight Watchers.

At some point, towards the end of March, I got bored and therefore grumpy. Ned was now comfortably into his work-from-home routine and so he was much less available for playing. And Nat, sensing the staleness in the air, suddenly started saying, “Go home.”

He meant his group home. He also began asking about his day program. I felt brittle and resentful of the whole arrangement, and Nat became anxious one day on a walk in the Arboretum. For the first time in almost a year, he was smashing his feet on the pavement, jumping high, and smacking his head. “Calendar, calendar!” he shouted.

We always had made him calendars when he was home on the weekend, but what could we do now? Monday: Wake up, Eat breakfast. Sit around. Get bored. Snack. Laundry. Dishwasher. Sit around. Lunch. Sit around. “No calendar,” he said when he looked at the week that yawned before him.

My irritation grew by the day, even though I was bellydancing (yes, I do that, shut up), playing guitar, and riding my bike. I got a medical marijuana card because I was so stressed out. Every time I looked at Nat, sitting so still, almost disappearing, I would feel the indigestion of guilt gurgling in my chest. As March slid into April, Nat began saying, “May,” meaning, “in May I’ll go back to the group home and day program.”

I said, “I hope so,” but I knew it would not happen in May.

What we needed was a day program. Well, good luck with that.

But — maybe? I created a list of activities that Nat liked, and told him to choose some for each day. He did it one day, but then refused. When I finally got him to articulate one thing he wanted to do, it was baking. Always baking. Before I knew it, I was going back in time, into behavioral training. I would use the baking as a way to get him to do other things.

But Nat would see right through me. He’d look at me with my perfect list of choices and his eyes would say, “Really? This is how you want to play it?”

So we would bake. And drive in the car to nowhere. And bake. And before long I noticed that Nat had a tiny little belly smooshed over his belt — something I never thought I’d see. “Well we can’t not bake,” I said to Ned. “So we’ll walk,” said Ned.

And they did. Long walks deep into Boston, avoiding crowded parks and their Covid-scented air. Ned would come back drenched in sweat, Nat would look like he’d just woken up from a refreshing nap. Soon Ned began relishing his job of plotting 4-5 mile walks. He had several requirements: avoid crowds; go for a long time; try to find new destinations each time; find a good podcast to listen to (no illustions here about chit-chatting with Nat for an hour of walking).

They’d be gone long enough for me to escape into something, usually dance or heavy gardening, my other joy. Seriously, the dirtier, the better. I’d have my break and they’d have exercise and an activity they both enjoyed. We could not get over the fact that Nat no longer insisted on the destination being ice cream as in the pre-Covid era. He wanted to go on the walk because he needed something to do and he felt good doing it. And it was his thing to do with his dad.

Then they’d come back and I’d give Nat (and me) an early lunch. I’d think petulantly, “Dammit, I don’t want to bake, why do I always have to bake,” and then I’d hear myself saying, “Nat, do you want to bake?”

We’d get out Mom’s Big Book of Baking, and pick out a recipe. It would have to be something we both liked because, well, Weight Watchers was stressing me out and the priority was filling Nat’s days and being happy with what we had. Still, most of the time I managed to get away with licking my fingers and eating only one cookie.

After the baking I would feel so proud of myself, and of Nat, who was very skilled at baking. From careful measuring to setting timers and temperatures to separating eggs, he was game for everything. At first he did not get why we were using so many bowls and taking so many steps to bake a cake. “Buy mix,” he said at first. “Nat, trust me,” I said, “You are going to love making a cake the real way.” And of course I was right. By May we were experts at making half batches of everything, half layer cakes, half peanut butter cookies, half of the fudge. Because I still needed us to survive this self-isolation and not acquire Type 2 Diabetes.

Then, the Zoom period of quarantine started, and soon we had choices of people to “see.” We did a Passover seder on Zoom (that was no more hectic than our usual seder). Then the day program started sending out links for hang-outs, or we’d facetime with grandparents, or have a music lesson with his rock band director. Suddenly I could actually develop a calendar that did not piss Nat off, because there’d be 10am Morning Meeting, 1pm Arts and Crafts, 5pm MUSE (the rock band gang) hang-out. And woven throughout were the walk and the bake.

We’d still have occasional discussions about when he’d be going back to his real life, and I found I could reason with him by describing what re-opening things would be like. He listened carefully, sometimes even smiling when I got really detailed about all the little changes that would have to be made outside, like masks and tests and smaller crowds. Now that it’s May he says, “June,” for when he’d like to go back, and I say, “Probably.” But I no longer feel anxious about what if it doesn’t happen in June. Because I know we got this.

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