As the country starts to open up due to economy and quarantine fatigue – despite the fact that the Coronavirus is still making its way through the population like it has been for over 90 days now – there’s a certain group of people who will most likely not be venturing out for fun in the sun with their friends: children with disabilities AKA those on the disabled list.
Prior to COVID-19, my experience as a mother to a child with a severe disability because of two rare syndromes already felt like I was benched from the game. The game of life. The game of motherhood where there are play dates and drinks with other moms and even, dare I say, mama drama.
I was consumed with finding my child the best therapies I could to help him bridge the widening gap between himself and his peers. I spent eight years, countless hours, and a ton of money to ensure that my child – who was not born equal to his sister or his peers – would be able to function in a world that was not built for him.
Parenting through COVID-19 with a child on the disabled list now:
In the first 30 days of quarantine, I watched those eight years of blood, sweat, tears, legal battles, doctors, and therapist appointments get washed away. I know other moms to children with special needs who feel the same way.
“Kids are resilient,” I keep hearing over and over from well-meaning friends, therapists, and teachers. But when you have a child whose primary issue is behavior and who thrives on social interactions and hugging the world, this pandemic has been devastating. Trust me, I know it’s been devastating for everyone in different ways.
But please hear me out because the effects on children with disabilities are grossly underreported.
You hear that many causes of death from COVID-19 are patients in nursing homes. What you’re not hearing about are the insane number of deaths coming out of group homes for those who have intellectual and physical disabilities. Usually when you have a genetic syndrome, it doesn’t just affect the brain. It can affect all the organs of the body. So, while the world thinks this pandemic is over, the world of people on the disabled list waits inside for a vaccine to be developed.
People with intellectual disabilities have a greater chance of dying from COVID-19 because of their underlying conditions.
For example, my 10-year-old son is prone to lung disease and kidney cancer in his teens/adult years. He is being monitored for that as well as a potential heart issue. Knowing little, and I mean very little, about how COVID-19 manifests differently in each person’s body at this early stage in the existence of the disease, I have to weigh the risk of every single thing we do. That means my 13-year-old daughter can’t go to a friend’s house to play. We are only allowing her to hang out with a friend outside, 10 ft apart, as long as both children are wearing masks. Is it uncomfortable and awkward? Yep.
But the alternative is for my neurotypical daughter not to see her friends in person at all this summer.
For my son, we have no choice but to keep him home and within arm’s reach of either my husband or me. He tends to elope and he runs up to hug people. Or he tantrums and spits, and therefore he’s considered a threat. Even though he hasn’t seen a soul in 91 days.
This morning while on a Zoom call with his behaviorist, he touched her face on the computer screen, like a caged gorilla in a zoo, in an attempt to make contact with a human. It sounds dramatic, but that’s what it felt like.
For years and years, I have felt benched.
And I now I feel like we are literally on the DL (disabled list) as we do our best to keep ourselves from catching the disease so we do not pass it along to our son.
Some people would argue that immuno-compromised people and their loved ones should be the ones to stay home, instead of everyone wearing masks and social distancing while in public. This kind of ego-centric thinking is EXACTLY why laws protecting disabled people exist.
It’s akin to saying, why have accessible parking spots for people with disabilities when it inconveniences able-bodied drivers from being able to park in those prime spots out front? Let drivers with disabilities park in the far-flung corners of the lot like everyone else or just stay home. Is that fair? Is that humane? The ADA (Americans With Disabilities Act) would say otherwise.
Not all disabilities are visible. And you must share this world with others; It’s not always about you.
When you’re out and about this summer, please be considerate and wear your mask if you’re around others. You do not know what someone else is going through in their bodies.