COVID School Closings: At Home Again with My Disabled Child

I am lying awake unable to sleep. Partly because of the bodies piling up. And partly because my son doesn’t want to go on a walk with me. Two months ago, I was called to come from New York to pick my son James up from Perkins, a residential school in Boston for blind and multiply disabled kids like him, because of the pandemic. Like all colleges and schools across the country, kids were being told to stay at home with their families. It has only been about a year since we sent him off to live there. It was a difficult decision: he needs so much help, given his severe motor impairment, trouble walking even in braces, and very poor vision. We couldn’t imagine being apart from him, but this was the best school for the blind in the country. And, if I’m honest, we also wanted nothing more than a great deal of time apart from him. Now he is home.

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This is not a vacation. We don’t dare go out in the world where others can touch us, breathe on us. This is no physical contact with other humans. Just our family, just us four and the dogs.

When we sent James off to Perkins last year, my thought was, “Absence makes the heart grow fonder.” It might be easier to spend time with him, appreciate him, if time with him was at a premium. The sad truth is, that hasn’t been the case. When he comes home for vacations and for summer, we are all tried to the breaking point. We get annoyed with his often-incomprehensible speech, his whining, his ungrateful demands, his insistence on listening to the Weather Channel at all hours of the day. We get frustrated and short-tempered with each other because we can’t lose it on him. We are supposed to have missed him. Why haven’t we? What’s wrong with us? We each reproach ourselves quietly in our rooms as we steal moments alone with a book or our phones.

I have felt guilty about this for years. Before he moved away at age 13, I had to take care of him in every way — tying his shoes, brushing his teeth, folding his laundry, cleaning his room, making him food, pouring his milk, even washing his adolescent body sprouting hair in places I did not want to see. So when there was a little bit of downtime, did I want to play checkers with him? Cook with him? Do arts and crafts with him? No. I explained to myself that I was just so exhausted (I was) that it made sense. A few moments stolen watching Netflix is nothing for all that I do for him. But if that were the case, wouldn’t I want to make that plaster-of-Paris garden mosaic with him when he came home for the first time in months?

James’s twin sister Charlotte usually plays a game with him, bakes cookies, at least invites him into her room to hang out when he first comes home. I don’t know if she does this because she wants to or because she feels guilty, like me. Probably a little of both. She does this the first night he is home, but then is ordering him out of her room the rest of the week. Now we have been together for two months, watching this virus shut our world down, turn New York City into a ghost town, turn our house into a prison of sorts.

I homeschooled James for four years before we sent him away. That was another reason I came up with to get some distance from him — things had gotten so tense between us because I had had to force him to work, to learn, to multiply and divide when he wanted to surf the Internet. And now, under pandemic rules, all his teachers have provided lessons for us to do at home. Back to homeschool. Something I swore I’d never do again.

He was answering questions on an article he had read about COVID-19. His teacher had said to write answers in complete sentences. In answer to “What is your family doing to prevent the spread of COVID-19?”, he wrote, “self-quarantining, washing hands, and social distancing.”

“But that’s not a complete sentence, James,” I told him. “You need a subject. Who is doing the action?”

“Otay, otay, otay!” he shouted in typical cantankerous form. He then started capitalizing the first word and putting a period at the end.

“James! That doesn’t make it a sentence, just a capital and a period! Do you know what a subject is?”

Then he lost it.

“Do you fint Ah’m a stupid wi-dooh tindoohdawdener who doesn’ know how to wite a sentence?!”

Next, he was screaming and shoving his chair back violently and slamming doors. Back to what homeschool used to be like just a few years ago. The violent outbursts and me and my daughter locking ourselves in a room while he raged. After a long talking-to, he was alone in his room and called out, “Mom!” I went in and he said quietly, “Ah’m sah-wy.”

He explained to me and his dad that “Ah jus’ miss Pooh-tins so much!” and broke down crying. I told him I was happy he liked Perkins so much that he would miss it. And I felt bad that I hadn’t been doing much to make being at home fun for him. I really didn’t want to take the dogs for walks with him. He is very wobbly on the trail and I have to hold his hand to steady him while managing our pit bulls. But I resolved I should do this every morning with him because he loves those dogs. It would be much-needed exercise for him — it is very hard for him to exercise since he can’t really run or balance his body well. He had also been begging me to give him a chore so he could pitch in. This would kill two birds with one stone.

The next day was beautiful and we went for our walk, careful to pull over as far to the side of the trail as possible when other people passed us. So I was surprised and actually kind of hurt when he complained later that he’d rather take the dogs for a walk on his own. Now, it is questionable whether I would let him do this anyway. We do live on a lot of land and he could possibly walk them on our trails without falling, but it’s also possible he would fall and get seriously hurt and even fall down a big embankment near the river and drown. But the hurt was what caught me off guard. I have been avoiding doing “fun” things with him so long that I assumed when I did one with him, he would love it. In fact, he wanted to run the other way. As I lie in bed, I realize that he feels my resistance to spending time with him. He knows I have been forcing myself to do this at times. And no matter how different he is, he is the same in simply wanting to be loved.

I realized that I have avoided so many things with James over the years not because they were hard to do (although they were) or because I was exhausted (although I was). I have avoided doing them because they remind me of my grief over how his body was born wrong and different. And they remind me that nothing will be easy for him in life and, in fact, even the simplest things, like walking with his dogs through our backyard meadow can be so dangerous that he could get hurt or die. Mindfulness author Michael Singer writes about this phenomenon, that a deep feeling can be so painful to experience that it is like a thorn embedded in the body. Instead of being brave enough to remove the thorn by processing the feelings, we usually choose to change our world so we can live with the thorn. And we must do whatever we can to avoid bumping it and causing pain.

I have given up so many moments of joy with my son so that I don’t knock my thorn, so I don’t feel that pain of grief. I have decided to forego the fun of checkers or Scrabble or even watching a fun cartoon together — and why? So I can read the news, even now the morbid news about the bodies piling up.

One afternoon, James was resisting my helping him with something — maybe downloading a document or folding his laundry or flossing his teeth. Whatever it was, he blew up at me. This time, I blew up back at him.

“Fine! I’m not helping you. I’m never helping you again!” I screamed.

I also said I wasn’t talking to him and stormed out for a drive with my daughter. When I returned, I had cooled off a little but was committed to NOT helping him and NOT talking to him. In my entire life with my son, this is the first time I had been pushed over the edge and told him I would refuse to help him. Of course, before long, he needed my help.

“Ah’m hun-dwee,” he said.

“Hmm. Wonder what you’re going to eat,” I said.

I really didn’t want to deal with all the food in the fridge getting pulled out and spilled all over the floor, but I stuck to my guns. I sat and stared at my phone. Before long, he had a plan.

“Ah dess Ah wi-ooh mate a san-wich.”

I watched as he got out the bread, turkey, and cheese slices. He asked me where the mayonnaise was and, mean Mom that I am, I ignored him. Eventually, he decided to make a dry sandwich. He pulled the sliced meat in shredded clumps from the package. He pulled the cheese in chunks when the slices didn’t pull off easily. But he got them between the slices of bread on his plate. And he took that plate to the table without dropping his food and he ate that sandwich. I was agog. I never thought he could do that. And, while I am not proud of refusing to help or even speak to my disabled child for a few hours, it taught me something I have been resisting learning — that my helping is often anything but helpful.

A few weeks later, we were up late together, as usual. But this time, I didn’t zone out on cable TV or get wrapped up in my e-mail. I asked him if he wanted to play cards. Cards are not easy for him. You need dexterity to hold the cards in one hand and especially to keep the other players from seeing them. Uno is his game. The numbers on the deck are big enough for him to see. He decided to put his cards on the table and asked me, “Ten you jus’ not woot at mah tawds?” I agreed to not look and put my own cards on the table which he would have no chance of seeing. I watched as his head hovered an inch over the cards, his head and whole body shaking with an ever-present tremor. I watched him struggle to take just one card from the deck. Like the slices of ham and cheese, it’s hard to get just one. He took three because that was easier. I didn’t stop him and grab the extra ones. I also didn’t come up with a million suggestions on how he could get a better grip, how we could fan the cards out instead of leaving them in a pile, or how I could “get it started” for him every time. I didn’t help him. We went round and round, him pulling many more cards than strictly allowed, some ending up on the floor where they stayed. He won one hand, I won another. His sister saw us playing and I was amazed when she joined in.

James has developed this funny new laugh. He throws his head back, opens his big mouth super wide and makes a sound from way back in his throat like a loud, creaky door. He won a second time and threw his head back, making his creaky door laugh for an impossibly long time. Charlotte and I both threw our heads back and imitated him. We laughed so hard the tears squeezed out.

The more I feel my love for James, the more pain I feel at his limitations. What a horrible reason to avoid connecting with him. And what a sure way to make him feel unworthy of love. No wonder he loves Perkins. The staff there are kind and sweet and understanding and none of them are his mom or dad or sister whose deep love for him is complicated by resentment and guilt. None of them have, like me, a big fat thorn stuck in their side that gets pushed deeper every time he tries to make a picture and gets paint all over the table. It’s painful to watch him struggle to get that one card from the deck and not save him. But it’s so much worse to suffocate my love for him by saving him, by stealing his independence and identity by being “helpful.” A wise friend once said to me, “I’d rather be kind than right.” I would add to that now, “I’d rather be kind than helpful.”

Reading about fathers and mothers and brothers and sisters and husbands and wives dying in our country these past months, gasping for oxygen, unable to have even their closest loved one at their bedside in their last hour, I realize we are all short on time. There is no time to waste on protecting the thorn. There is no time to waste avoiding the joy. Because, yes, the joy makes the love burn brighter. And the love makes the grief smart more. But the heart doesn’t know the difference. Grief and joy are the same sweet pain in the moment we say goodbye. Never before has it seemed so critical to color a picture way outside the lines, spill a halo of flour outside the batter bowl, or spend minutes deciphering each other’s imperfect words. As we do, we breathe each other in, breathe our love out, right now…as if it were our last.

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