Autism Meets Coronavirus
I'm not sure what kind of April to expect, with the coronavirus dominating the month usually dedicated to autism. I suspect raising awareness is low on most people's lists, and that blue lights will be scarce on April 2. Here's just a few of my musings as the pandemic goes on:
Self-Quarantine
If there's anyone who is well equipped to handle social distancing, it's Leah. I wish that weren't true. She wants friends, in her own way. She has become attached to a couple of classmates, thanks to a lot of hard work and community building by a spectacular teacher. But none of them has much capacity to carry on a relationship outside school. Nonetheless, I see Leah's longing when she watches her favorite Jack Bowser clips, and calls him her friend. She's nineteen years old and has never invited a friend over. We've had a rotating cast of support staff in and out of our house since her sisters were babies -- funded by ChildFind, then by us, and finally, after a years-long wait, by Maryland's autism waiver. Some became honorary family members (Lord help them) through devotion to her and to us. I'm acutely aware of it as her sisters line up video chats and online games with school friends and Leah watches more Jack Bowser.
Distance Learning
It was a tough decision to give up on a diploma, but it was the right one for Leah, and at this moment, I'm grateful for it. I don't have to worry about whether she is losing ground in a class she needs for graduation. Leah's reading level has plateaued – or maybe her willingness to challenge herself has plateaued. I may never know. I do know her school day focuses more on functional skills (a direction I agree with), and that her instruction in core academic areas hasn't changed much. I'm not sure I want to do battle with her over content she has seen over and over for several years. She's getting bored and the skill gaps that will impact her most in the next few years aren't covered by the 3Rs. So why fight about a math lesson?A diploma will do very little to enhance Leah's quality of life when she's finished with school. With or without it, she is still at greater risk for abuse than typical peers. With or without it, her life expectancy is still shorter than that of her same-age peers. With or without it, she still needs the protection of a guardian. With or without it, her greatest needs are still skills that make her as employable as possible, and a good roommate in a supported housing situation that almost certainly doesn't exist yet.All of that adds up to zero guilt as I toss the generic, thrown-together packet from our district's special education office (the learning equivalent of a happy meal) in the recycling bin.
Routines
Leah's weekdays are pretty full while school is in session. She commutes to Baltimore and usually has sessions with 1:1 support staff, courtesy of Maryland's autism waiver, for a couple of hours after she gets home. (In theory, anyway – in practice, we have had job openings for 6+ months that our provider agency has failed to fill.) Her down time is mostly her own. On weekends, that usually means she holes up in our cool and dark basement guest room, beginning at noon on the dot and stretching a few hours. Sometimes she sleeps, sometime she chills and talks to herself. She is very protective of that time and will only willingly alter that routine for an event as enticing to her as Christmas morning is to a small child. The last occasion was a showing of 'Frozen 2' (which I was not allowed to attend; I have been kicked off all movie outings in favor of her father).It is a giant pain in the ass.It's been hard to break the habit, or even reduce the time she commits to cocooning. I've tried some more subtle approaches, like rearranging supplements to give the ones that supply a jolt of energy at midday, with little luck. Right now, with some of her favorite reinforcers unavailable, I'm not inclined to push harder. We're glued to the house anyway.
Watching for Symptoms
I try not to think too much about the virus itself, beyond following the rules made to contain it. If I contemplate what could happen if Leah – the most medically complex of us – catches the coronavirus, I won't sleep until the state of emergency is lifted. Like many people with autism, Leah has comorbid medical conditions. She is also a very unreliable reporter, leaving those around her to guess at symptoms. I've spent her life speaking for her. If she not only catches the coronavirus, but requires a hospital stay, will I have to fight to go with her? Forcing Leah to go through that alone, while unthinkably cruel to her, would be an unnecessary hardship for the hospital staff as well.
That's the most compelling argument of all to let Leah ride this out in her comfort zone.