The Least We Can Do

We sent our son to school today. Even as the coronavirus rages through the US, and not insignificantly through our city, and the debate about opening schools and returning students to classrooms also rages. It’s not yet the dog days of August, but our school is offering special education students two weeks of preparatory classes. It’s only for two hours a day, so there’s that. These classes are for assessing the “summer slide” experienced by the special ed children. More like a Covid slide since the schools were closed in the spring and as hard as we and the teachers tried, what passed for virtual lessons for Noah hardly passed as learning. What we learned was that he has difficulty engaging with a screen. The teachers and kids coming at him via Zoom are not much different from the characters on his favorite TV shows. They are there for him to watch, not to communicate with. That’s not to say he didn’t try, but you could tell that the concept was too abstract for him. And for a child with significant vision issues, focusing on a screen that is often too dark or uses screen-share graphics that are too small, the finer points of a lesson evade him. And when it’s a struggle for us as parents to even keep him upright during the lesson — he kept wanting to lay down, such was the struggle to concentrate — there was little more achieved than a hefty dose of frustration by all. No amount of cheerful cajoling could make the effort feel valuable and instead set us up for a miserable rest of the day.

Our son is 15 years old and cannot read or write. His vision and his mobility are impaired. He cannot identify all of the letters of the alphabet and something in his brain is so circuitous that even though he knows his colors, he often says the wrong one first and needs to be prompted to correct his answer. The second time he is nearly always right, so there’s that. We have flashcards and we have a lightbox and we have endless containers of crafting materials to use for counting. But every home teaching session is like opening a new jar of pickles. You know your hands are strong enough to twist off the cover, but you immediately feel flummoxed and beaten by the sheer impossibility of getting a grip. There are better analogies I could use. Every day with a special needs child is Sisyphean. There is no reaching the apex of the mountain and finding a resting place to enjoy the view. But you can’t live with yourself day in and day out if you don’t try.

We have debated long and hard about sending Noah back to school for these hours. They don’t matter. He won’t get a grade. He won’t magically learn all he has never been able to learn. He will get to interact with people other than his parents, and god knows he needs that. And he will be able to participate in activities with the pretense of learning, and he enjoys that too. If I sound pessimistic about his abilities, I prefer to think I’m realistic, and in the special needs world, realism can sometimes read like a loss of hope. But really it’s having found a middle path. While I am not a practicing Buddhist — my temperament makes it difficult to be a practicing anything since I abhor repetitive work, and it is not lost on me that it is this temperament that makes it difficult to live with a cognitively disabled child who needs repetition day in and day out — I have absorbed some of its instruction while searching for ways to make peace with Noah’s limitations. The middle path avoids extremes, is located somewhere between “eternalism and annihilation”, all or nothing. Much like a therapist may warn against “catastrophizing”, or the tendency to think that the worst case is the inevitable case. More simply put, I try not to bang my head against the brick wall of his disabilities while I also simply keep trying to try.

The media messaging around Covid is so extreme that it can be challenging to identify a rational response to creating a life during the pandemic. We have new parameters, and yet, don’t we always have parameters with which we must deal? Of course we have spent much of the past few months quarantined in our house with very few outings, most of them outside. We have made an exception for outdoor physical activity — going to a park, a beach, a tennis court — because outdoors activity is deemed nearly 2O times safer than indoor activity. (20x safer than what?) And we have made an exception for Noah’s therapy three times a week. Even that seems like we were somehow violating what felt like new societal rules. That we were being frivolous with risk, risk which we might mitigate by wearing masks, washing our hands, cleaning our fruits and vegetables, staying away from other people unless those people are also dedicated to taking all safety precautions. But because I don’t see the virus as a temporary thing, something that will suddenly be vanquished by September or January, all of the behavioral adjustments we have made are now a question of endurance. Not only how long can a person tolerate quarantine? But what is the quality of life that person has during a year’s long quarantine?

What does absence do to us? What is the long-term unintended consequences of a child who doesn’t have anywhere safe to be or any food to eat if the schools don’t open? What hard-earned skills will Noah lose if he doesn’t go back to school for 6 months when he is not the kind of child who can instigate play or use technology? If we go and visit Noah’s grandparents, will he and they benefit more from the love than they lose risking infection? Of course no death is acceptable and becoming inured to the deaths caused by the coronavirus is not a way to be a human in this world. But isn’t death inevitable? Can we escape that one true fact of being human? Every day that we are alive we mitigate risks and still actively participate in the world. When we drive our cars, we accept that on the rare occasion a semi could cross the line into our lane. When we swim in the lake, we accept that on the rare occasion an undertow could sweep us away. When we attend a public event, we accept that on the rare occasion the bandshell could collapse, or a gunman could be lurking, or a drug could be slipped into our drink. To believe we have control over our mortality is to ignore what it is to be human.

Since Noah was born, we have been negotiating with his mortality more than our own. First as a baby, like all first-time parents with a new baby you simply hope to keep them alive. But then at 11 months when he began to have seizures, every day was a day during which he could have a seizure and we could lose him. Some days his death seemed a near inevitability. It was safer to keep him at home under our watch because we knew the signs, could respond more quickly than could distracted teachers or unprepared assistants. As he grew older, even as the risk of something catastrophic happening seemed to increase — the bigger he got, the harder he might literally fall. And as his condition worsened we had to make decisions about medications. Medications that made him ill, or lethargic, or had long-term consequences. These aren’t considerations most parents have to engage with when wanting to insure their child’s safety. And the burden of those decisions doesn’t make us special, but it does make us tired, and well-practiced. Will Noah contract the coronavirus because we decided to send him to school? We can’t know. And if he does, will he spread it to us? Will any one of us have a disastrous reaction to the virus or will it pass through our house like a bad case of the flu? We can’t know. Will the virus cause Noah to have a fever high enough to reignite his seizures which have been under control for years? We can’t know that either. But in the absence of answers, the extremes (eternalism or annihilation) cannot be the only alternative.

None of our options are good ones. If we keep him at home are we contributing to a continued loss of skills? If we send him are we contributing to the spread of a virus that could kill one of us or someone we interact with? Will what Noah learned in school today make the risk worth it? Do we even know what that risk is? Should we let our fears determine that the risk factor is 99% if it is actually 9%? If going to school today is not notably more risky than Noah going to school on any given day, because the protocols are being carefully followed, why would we not give him that opportunity to grow? If Noah gets ill, if we get ill, and we regret our choice, is that so dissimilar to any regret that results from struggle? The message will be that we could have made a different choice, that we could have avoided exposure. (Even as I write this, my husband is downstairs cleaning the basement bedroom and bathroom in preparation for possible isolation when one of us gets ill.) But we can apply that thinking to any risk. We could have avoided getting into the car on that day, wading into the water on that day, going to that event on that day.

So we are left to trust the measures that the school and more importantly the teachers are taking. There are masks and face shields. The kids will be kept in groups of three with two teachers per group to keep them separated. They will be taught things most of us have been relearning since the spring — how long to wash your hands, what 6″ of separation actually looks like (apparently there is a song and dance), how to keep your hands off your face. His high school is in a fairly new building so I assume has decent ventilation and filtration. And I also assume that the custodians have had the whole summer to perfect their cleaning regimen. But I also know that Noah does not have control over his body. He touches any and all surfaces. He most often eats with his hands. Sometimes he drools. So when he comes home we will soap up his hands. We will likely become obsessed with taking his temperature and our own. We will keep him at home otherwise so that he doesn’t expose anyone but us, so he doesn’t bring the virus back to the school, to the teachers, the other kids. We will keep our risk-taking as much to ourselves as we can. It’s the least we can do. And we will hope that that is enough.

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