We just got news from ours son’s service agency that our separation must continue, at least into the near future. A group email from the agency included,
People living in (Agency) settings cannot go back and forth between their family home and their (Agency) home.
It is sad but necessary. Even if people with special needs do not have medical conditions that make them more at risk from Covid-19, they might have behavioral factors like not washing hands without direct supervision. Or sensory issues, like overwhelming discomfort with face masks (the sensation of the mask on the face or the feeling of straps around the ears or both).
Many people with special needs live in group homes or institutions with dense population, so as we’ve learned the hard way from nursing care facilities it is essential to control contacts in order to keep the virus out.
We know from a staff contact that something like cabin fever is setting into our son’s group home. Anxiety is high and behaviors reflect that.
I wanted to get some perspective from people with special needs as to how they’re dealing with the quarantine. I reached out to one very verbal young guy, but I framed my question poorly.
I asked Has Covid-19 caused any problems for you?
I should have anticipated him reading that in the most literal sense. His reply was I’m healthy.
But on his Facebook page, I found this, dated two weeks ago: Hey everyone friends and family I am going stir crazy I miss doing my special Olympics events. I hope we get back at it this fall.
The mom of a non-verbal daughter with autism tweeted, her schedule has been gutted due to Covid closures. Fortunately they are in a place with open beaches and the young lady loves spending time in the surf.
Cabin fever due to lost opportunities is not unique to the special needs community. Neurotypical folks who’ve lost work or social activities are sad, angry, anxious, depressed and all kinds of other stuff, too.
It’s hard for me to comprehend, let alone express, the difference between a quarantined person with autism and a neurotypical person stuck at home. I’m prone to read it my way and treat it as an emotional matter.
But the difference is that of a person with a hand on a hot stove. Our well intended responses to a person laid off from work – “Hey, you’ll be OK,” “Hey, the government is sending a stimulus check,” “Hey, you still have your health and family” – would be considered inappropriate (if not insane or sadistic) responses to a person whose flesh is charring.
Many people with special needs, like my young friend missing the Special Olympics, can understand rational explanations like “There’s a bad bug out there and we have to stay home so we don’t catch it.” Yes, he’s bummed about the disruption of things he likes, but he gets it.
Many others, like our son, are more like the example of a person getting burned on a hot stove. There’s pain and all kinds of other neural sirens blaring through their system and not open to reasonable words about cause and effect or promises of a better tomorrow.
For caregivers it’s the ongoing nightmare of stuff you really don’t get and can’t fix for those you love.