How My Autistic Brother Learned to Cope in the Midst of COVID-19—And How My Family Followed Suit

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Photo: W+G Creative

When Illinois’ shelter-in-place orders took effect, my dad and I decided to bring my brother Daniel home to stay with us. Daniel and I, now both adults, no longer live at my dad’s house; I live in a condo in downtown Chicago and Daniel lives in a suburban group home. He is 43 years old, and he is autistic.

The family unit is tighter these days. Our other brother Kevin lives with his family in California, and our mom passed away from lymphoma when Daniel was 21 years old, and I was 12. We knew it was important to be together right now.

When I entered his group home to get him on a Tuesday afternoon, he seemed confused. It’s normally my dad who picks him up, and it’s normally on Friday nights, when he brings him home until Monday morning, the time he drops him off at his day program, where his weekly routine begins anew.

As I waited for him to collect his things, I realized the difficulty my dad and I would face in the many things we would need to explain to him.

Characteristically, individuals with autism are highly dependent on routine—and Daniel is no exception. As I waited for him to collect his things, I realized the difficulty my dad and I would face in the many things we would need to explain to him: Why his day program is canceled. Why his weekend bowling is postponed. Why he’s relocating “home” home with me and his “Gene,” as he calls our dad, for the long, foreseeable future.

And, perhaps above all of these, why we can’t take him to the grocery store.

The requests started as soon as we entered my car. “Nicole, we will go to Jewel-Osco.” It’s logical—he goes every weekend with my dad, after penning a list of his essentials: Kraft parmesan cheese, Twix Bar, Hershey’s chocolate syrup. I knew already that I would do everything in my power to stop the two of them from going on their own—my dad, 75 years old, and Daniel, unfazed by the media’s urgings of hand-washing hygiene and overweight with diabetes.

I also knew that this change-up, in particular, may present a mild catastrophe for him in every day that followed. For lack of a better explanation, I told him it’s closed.

Daniel's rebuttal was a phrase we heard often, one that beckoned confirmation for something to take place not today, but tomorrow: “When you wake up.”

I breathed in and considered my next move, knowing that whatever words that followed were ones I’d have to abide by for the months-long quarantined run. “It’s going to be longer than tomorrow, Daniel.”

We pulled into our driveway, and Daniel looked at me as if I was bluffing, then pulled out the line that we have had to tell him so many times in his life: “You have to wait.”

“That’s right,” I nodded. “We have to wait.”

The next morning, Daniel came into the kitchen and handed me a grocery list. “We will go to Jewel-Osco,” he said, putting on his coat. I remained seated. “I’m sorry," I said. "We can’t.”

“It’s closed,” he said. I nodded.

It’s then that it begins: He storms upstairs, grabs the two pillows from his bed, and lurches them from our second-floor balcony onto an armchair that rests in our living room, directly below. One of them topples to the floor—a miss by his count. The anger escalates as he thunders back down, biting his hand and making upset outbursts along the way, his face growing red in frustration. By now, our dad is in the kitchen, observing with me the pattern we had seen unfold in the past couple of years when Daniel wants his way with something that he is unable to control. Any attempt to intervene, we know, is at our own risk—Daniel being 6 feet tall and built like a linebacker.

We don’t just stand there, either. My dad implores me to allow them to go, arguing that Daniel’s mental health is as crucial as his physical right now, that he’s already had to give up too much, too soon, that he needs a single thing he can count on. This, of course, is a valid point. I think of my own comforts quick to go, and yet, ones to which I enabled myself to find quick runners-up: the espresso machine in lieu of Starbucks, the Zoom calls over happy hours, the virtual workouts instead of daily gym visits. (I think of my dad’s consolations, too, the ones that often center around broadcast news updates and Entenmann’s doughnuts.) Still, none of them put my physical health—and, therefore, their health—at risk. So I start to think, too, about the many ways Daniel has adapted before: To the many group homes. To the countless caregivers. To the loss of a mother.

I think, too, about our grandpa, a World War II veteran who affectionately called Daniel his “Danny Boy,” and who had reminded all of us always to “roll with the punches of our lives.”

I asked my dad to let me try one more thing.

After a landslide of pillow tosses and a 20-minute soundtrack of temper, I told Daniel I needed him to take a break, that I wanted to show him something in the kitchen. He met me, breathing hard and glistening from his efforts.

“Sit with me here, and show me your list,” I asked. He pulled a chair next to me and presented his petitions again, a single sheet of paper with nine prioritized items, Hershey’s syrup at the top. I opened Instacart on my browser and started scanning. “This one?” I asked, hovering over the bottle. He nodded. I added it to my cart. “Now we add everything from the list here, and then the person brings all of it to our front door—sound good?”

He looked skeptical. I did, too. But he let me finish his list, and I told him it’s taken care of, that the groceries will arrive soon. “Tonight,” he says. I nodded, assuming that this was completely feasible. When I clicked on available time slots, I froze. “Saturday-Monday.” It’s Wednesday afternoon.

I tried to hide my panic as he left with our dad for a car ride. I sat there, at the table, refreshing the site every five minutes and closing my eyes in hope. After an hour of this, and of plotting out the very few alternatives, the heavens opened up, along with a “within 5 hours” slot. Two hours and one speedy, saintly shopper later, and our first internet-bought groceries had arrived—just in time for Daniel’s return home.

He trudged inside, dropped his coat to the floor, and made a beeline for one bag only—the one with the Hershey’s syrup. “What do you think?” I asked. He smiled and responded with one line, the one he offers as a seal of approval at only the most deserving of times: “It looks good.”

After mixing himself a glass of ice-cold chocolate milk, he grabbed his pillows from the armchair and began the pillow toss cycle anew, but this time, singing content refrains from The Producers and Les Misérables. My dad entered from the garage and turned on the news, volume low. I made myself an espresso. While no words were exchanged, it was in that moment I believe that we all recognized that a new at-home normal was taking shape—one that may have been even better than we could have hoped for.

It was in that moment I believe that we all recognized that a new at-home normal was taking shape—one that may have been even better than we could have hoped for.

As with the rest of the world, our changes weren’t limited to online grocery shopping. In lieu of the environmental stimulation Daniel had once found within his day program, we took drives to the beach, where he could spend hours embracing the clay-like, tactile joys of sand. We cooked grilled cheese lunches, a childhood favorite that he requested, bound by memory, that I cut into fours for him. Without weekend workout trips to the YMCA, we took sunset walks together, marveling at the quickly growing families of geese that had sprouted up before our eyes upon spring’s arrival. And to ensure some intellectual challenges, we congregated at the dinner table for rounds of Connect Four, Candy Land, and Jenga—in which Daniel repeatedly pummeled us.

My dad and I made way for shifts, too—finding time together to grill, write, plant flowers, and laugh over viewings of Mrs. Doubtfire and The Princess Bride.

Of course, with new routines came some new challenges: Daniel got frustrated when the fridge ice maker couldn’t keep up with his desired intake of Diet Coke, and he demanded to wear the same green striped shirt everyday (ensuring a constantly booked washing machine). Meanwhile, my dad navigated his way through new technology and noise interruptions in working from home for the first time in his 50-year medical career, and I yearned for social interaction and hugs (hugs!) from good friends like never before.

Even for the latter, we found relief: A way for the three of us to huddle up for a four-part cheer that involved all of us punching the air victoriously, exclaiming the words, “Go, Bug, Go, WOO!” It was a mantra Daniel had used over the years to ward off any bee or ant that came his way, and one that we felt applied just as well to COVID-19. Unifying and mood-boosting, it functioned as a family embrace for the time being, closing out our evenings and starting our mornings together anew.

We were doing it. Daniel was adapting, and we were, too.

On June 6, five days after Governor Pritzker had lifted Illinois' stay-at-home order, my dad and I decided we could make our first in-person trip to the grocery store together in nearly three months. I readied my camera, eager to capture Daniel’s reaction as we entered the store, to witness the glee on his face when we told him that the impossible was once again possible, that the long-awaited arrival of normalcy was now upon us.

But when we pulled into the parking lot, Daniel’s response seemed mixed—and upon entering the store, morphed into mild agitation when he realized the coffee samples—his favorite part of the experience—were no more. It dawned on me: After grieving our old routines a first time, we were now being asked to grieve them a second time. The old, familiar aspects of our everyday were now peppered with newness—newness that required a face mask, lots of hand sanitizer, and far fewer taste tests.

And, so it would go, I realized, with all of our other re-entries into the world. That with relief and excitement come an added layer of complexities that we are challenged to recognize as a part of our experiences, including Daniel’s slated July 1 return to his group home and workshop, a return that we anticipate with hope, and, naturally, some trepidation, with the novel addition of face mask requirements, temperature checks, and social distancing—the same practices in play as I consider my return to cycling classes, work meetings, and first dates.

But then I think about the three months my family and I had already shared together and, despite being asked to stay securely put, just how far we had come. That against many odds, and certainly our own expectations, Daniel wasn’t able to just adapt to the times at hand—he was able, in many cases, to embrace them. And in the moments my dad and I need reminding of our own potential for progress, it is to Daniel we turn. To he who is most significantly challenged by change as we observe with admiration how he lives out our grandpa’s words; how he rolls with the punches; “Go, Bug, Go, Woo.”

And so will we.

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