But as we walk, Linda turns towards me and asks, "Why are you squeezing my hand so hard?" I realize that my mind has shifted and my vise grip reveals another source of tension -- anger.
"What about Sean? How can the people in charge of prioritizing who gets the vaccine move us up in line, because we take care of him, but neglect Sean who is the vulnerable one?" I ask. This doesn't make sense, and it's gotten my blood boiling. At the time, California had not yet expanded vaccine eligibility to residents with developmental disabilities.
The state has since announced in a memo
that it has a plan to prioritize people 16-64 with various disabilities starting March 15. Autism isn't listed specifically, but the memo says that prioritization will be given to individuals if they are "likely to develop severe life-threatening illness or death from Covid-19 infection," if contracting the virus would "limit the individual's ability to receive ongoing care or services vital" or if the individual's disability would make Covid-19 care "particularly challenging."
Sean's condition would, on paper, make him a priority, but as a parent -- and as someone seeing many navigate a less than perfect registration system and states tasked with rationing out limited supplies of vaccines -- I'm not sure that he will get vaccinated in a timely manner.
I am a retired special education teacher and Linda is a retired ICU nurse. We have witnessed firsthand the pain and struggle that families face as they willingly take on the job of protecting and nurturing their child who happens to be "wired" differently.
Today, these differences, according to the US Centers for Disease Control and Prevention, make Sean and his peers particularly vulnerable
to contracting Covid-19 and much more likely to suffer severe symptoms.
Parents and guardians of special needs children know that our kids can be unable or unwilling to wear masks. Developmental challenges make their personal hygiene less than perfect. We understand, "Wash your hands, and don't touch your face." They don't. Lifesaving guidelines that might seem logical and obvious, goes in one ear and out the other for Sean. I imagine that for him, my voice can be like the sound of a gnat buzzing around his head. He hopes that by ignoring the sound, it will go away. He's not being mean or rude, he just isn't processing the message.
Sean has also dealt with respiratory issues since childhood: including asthma, allergies and pneumonia. These challenges have impacted the activities he loves the most: being outside, playing, working hard and being around animals. Sometimes Linda will remind me that she needed to bathe Sean multiple times a day after he went outside climbing trees or playing soccer.
His allergic reactions are troublesome in themselves, but they could be the beginning of a downward spiral into bronchial and lung issues like pneumonia. Due to Sean's developmental disabilities, he will not blow his nose or cough up phlegm like others do. He is unable or unwilling to complain or identify symptoms for us. "I'm fine!" he will say in order to make us stop asking questions. Consequently, he is much more susceptible to the progression of respiratory maladies.
Sean had allergy treatments when he was seven or eight to try to desensitize him to outdoor irritants. We resumed treatments again about two and a half years ago, which entail two to four injections every two to four weeks. He willingly endures these, because, on some level, he realizes that this painful process enables him to live his dream of working on the staff of an equestrian therapy program caring for the horses and helping others with a variety of disabilities to develop and thrive, while their therapy is disguised as fun.
Unfortunately, since the requirements for isolation, social distancing, etc. Sean has been unable to assist students in their equestrian therapy sessions. He continues to take care of the horses, which he loves, but he clearly misses the close contact with staff and students. Our concern is that, in spite of his efforts and determination, the Covid-19 virus could enter his system and set off a deadly sequence of events.
Overall, I have observed a regression in Sean's development in the past year. He hasn't been able to visit his only niece, Harper, who is now 23-months-old. He has missed a whole year of her development. "When can I see Harper? When will the virus be over?" he asks repeatedly. Zoom and facetime don't quite foster the same closeness
, particularly for people with developmental disabilities. He can't visit local fire stations to visit with his heroes. He can't accompany me into the market, where he used to be able to push his own cart around and select what he wants -- not what dad picks.
These things might seem simple to many, but they are huge for Sean and us. Hard fought and well-earned developmental progress has slowed and slipped backwards in areas like self-confidence, self-regulation, mood control, problem solving, speech and language and many others which come naturally to the typical person.
This population seems invisible
and inconsequential, as I read about the latest statistics, color coding and designations of who will get vaccinated next. These data points allow decision makers to hide behind the numbers and ignore the disabled community. Families like mine often lack the unions and high- powered lobbyists who can push and pull the levers to achieve their desired results.
During my conversation with Linda after our first dose, my emotions were swinging between anger and fear. "What if Sean gets Covid and has to be hospitalized? He wouldn't understand and we couldn't be with him to help. That is my worst nightmare! How can we get the decision makers to look beyond the numbers?" Linda answers, "I don't know, Love. I'm afraid we could lose him." As an ICU nurse she has cared for numerous intubated patients and watched them slip away.
We have been married since 1972, and since 1986 -- when Sean was born -- we have faced each crisis like tag team wrestlers; taking turns being the strong, brave one battling the opponent in the ring, until exhausted we reach through the ropes to tag out and allow the other to take over and continue the fight. How single parents face these battles alone is heroic to me. But fighting Covid -19 and protecting Sean feels different -- the stakes are as serious as they get. This isn't just any match.
And although now California's updated vaccine plan offers us a glimmer of hope, I know there are many other families like ours around the country, some of whom have children with much more serious challenges than Sean. Aren't our children vulnerable enough? Medically fragile enough? I can picture Sean's peers, my former students, with spina bifida, down syndrome, cerebral palsy, and other life altering conditions, bravely facing each day with a spirit that amazes and inspires me. Many of them can't speak for themselves and plead their cases.
Parents and guardians of special needs children have spent years advocating for society to value their existence and future. We have asked that they be allowed to fit in, have friends, find meaningful work and thrive. Now we are confronted with the horrible potential that this virus could steal our hopes and dreams and even their lives.
I wish I could put photos of Sean and his community on the desks and Zoom screens of those making these decisions about vaccine priorities. Folks like him are often shunned or ignored. It's an issue that needed to be addressed long before the pandemic, but now when such life and death decisions are being made about their existence, visibility is even more crucial.