“CLOSED.” – Nancy

“CLOSED.” – Nancy

“School closed,” says Sam for the 14th time today. I take a deep breath. If I don’t answer him, he’ll just keep going.  

“Yes, school is closed, my boy. You’re finished with school. All done.” He graduated in June of last year, yet he’s asked every single day since.

He looks at me for a long time, a million words trapped inside his head. “Closed,” he finally says, and I know what he’s trying to say.

“That’s right, sweetie. Everything is closed for now. But pretty soon things will open and we’ll get to see our friends again,” I reassure him.

He goes back to his puzzle in silence. Until the next time he asks.

I don’t believe what I’m telling him, you know.  

We had a plan. A pretty good plan, I think. Sam had something on his calendar 5 out of 7 days each week. A nice mixture of art, OT, PT, cooking, socializing, bowling, swimming, church, baseball/kickball, and gymnastics. The home days would be spent working on ADL’s (activities of daily living, ie. laundry, cleaning, self-care, etc.), Summer Camps in June/July, and start attending the Good Works Farm day program in the fall. But then the pandemic hit and the wheels fell off Sam’s wagon. The wheels fell off everyone’s wagon. Mid-March, everything came to a screeching halt. Just the week before, Sam had enjoyed swimming, bowling, church… but suddenly his morning question, “Home?” was met with “Yep, sorry, bub. We’re home again today,” as I slunk toward the coffee maker in my bathrobe.

That was March. This is May. It’s been 67 days since the world stopped turning. Our one outing a week now is to pick up groceries. We don’t even get out of the car. It’s a thrilling moment in our week. The main reason I can’t take him out into public is because Sam doesn’t understand the point of mask-wearing and points and laughs at them. I try to explain that they are trying to keep him safe, and then I roll my eyes so far back into my head it hurts.

It’s insulting and discriminating to lump all individuals with special needs into the “medically-fragile” category. We have worked exceedingly hard over the years to strengthen his damaged immune system so that his body can work as it’s designed. Immunologists will tell you that isolation and over-sanitizing will do more harm to your immune system than good. Of course, if you’re medically-fragile, stay home. Sam is not. Sam needs to get back to the activities that make his life meaningful, thereby making my life meaningful.

These alternative, socially-distant ways of living that typical people have somewhat adapted to won’t work for Sam. Sam has never been one to talk on the phone or even look at a video chat. He has trouble with eye contact so it’s probably very difficult to look at someone on a screen. Sam enjoys the interaction of real people, hugs, high-fives, tickles… he’s not going to wear a mask and he’s not going to respect the 6 ft. rule. Sam’s swim lessons require someone to be near him, touching him. His baseball needs hand-over-hand assistance. These things can’t be modified to fit the rules. Do you know how long we worked to get him to this point with his social skills? Now I have to tell him to stay away from people?? Uh uh, no way.

I respect how difficult all of this has been on our Governor and Medical Director. Having everyone in your ear with their advice and then having to disseminate it down and live with the fallout of your decisions? I wouldn’t want your jobs. But I promise, if you were in my shoes, you wouldn’t want my job either. Every day, I get to tell Sam that today is going to be exactly like yesterday, so is tomorrow, and so is your foreseeable future, son. For as hard as we’ve worked to create a life full of meaning and purpose for you, if you can’t follow the new rules, you’ll be ostracized, segregated, and isolated.  

Ironic, huh? The government has spent years making up rules to prevent isolation and segregation for people like Sam and yet, here we are.  

-Nancy Bernotaitis

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