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Protecting Akiva in a pandemic

Questions of triage and whom to save if the medical system becomes overloaded terrify and infuriate me; my son has Down syndrome
Akiva at Ramat Rachel on a longer walk -- when that was still allowed! (courtesy)

When I wake up each morning, I feel a bit of dread steal over me.

What day is today? I can’t remember.
What should we do today? I don’t know.
Should I take a quick digital hit of the news? I feel afraid to even look.

Every morning (since life closed down) has had that Groundhog Day feeling. It’s that terrible Sunday on an endless replay. Sunday, March 15th was the day that Miriam and I put Shutaf Inclusion Programs, our shared blood, sweat, and tears of the last 13 years, on ice, along with our valued staff.

Corona? No evening programs for teens and young adults with disabilities.
Corona? No Passover camp for kids and teens with disabilities.
Corona? No staff to support families from afar, except for me and Miriam, each of us parents to young people with disabilities sheltering at home.
Corona? We’ve shut Shutaf down to a hum in order to protect our little island of inclusion programs for the future. We hope we have staff who can return to work when the crisis passes.

Meanwhile, Miriam and I work in brief spurts, only getting the most pressing business done. Between obsessing about Akiva, that is, and my mother who is recovering from pneumonia, not Corona, and the rest of everyone dear to me and the world at large. 

Watching Shlomo Katz via Yachad and Zoom!

Corona means kids, teens, and young adults with disabilities are at home with little to occupy their time. Corona means that many families (not all of course) whom we serve who are already in crisis from financial, emotional and disability stressors may struggle to cope with their children, especially those with complex behavioral challenges and/or significant sensory issues.

Daily life without regular routines isn’t just hard for children with disabilities, it is deeply stressful and even scary. Not everyone finds their child’s issues easy to handle during normal times, and now there’s the rest of the family’s needs to respond to, and we are in a lockdown that may grow tighter.

If we cannot walk outside, I will go crazy, forget Akiva.

Is Akiva awake yet? I don’t hear him yet, I think to myself. I try and lie back down and resist the siren call of the phone on my bedside table. If I glance at the New York Times, I’ll only spiral into more fear for my friends and family in NYC and in the US at large. Let alone Italy, one of my favorite places to visit.

On an airplane. Remember those things that fly through the sky, along with the joys of duty free? Will we ever feel safe to travel to new places or to revisit those we especially love? It is hard to imagine now, when my life extends to simple walks around the block with Akiva

Protecting Akiva has been a full time job since he was born 22 years ago with Down syndrome and challenges on the autism spectrum. As he has moved into adulthood, we have focused on helping him move towards his independence, but Corona is a game-changer. While Akiva’s health has been excellent of late, he has a history of pneumonia and respiratory issues. Corona and Akiva? It scares us. Corona and Akiva hospitalized and in isolation? My stomach churns to even think about it. 

The last few weeks has meant increased isolation — for us as well as for him — along with the real loneliness we often feel during vacation periods. He’s lonely and so are we. Short walks and indoor calisthenics only take you so far each day. A non-reader, he mostly spends his days sitting in his favorite chair with his iPad. An avid and skilled YouTube user, he is watching a lot. There’s only so much I can do about it. 

The 3 of us, out on a local walk

What makes it even harder is his inability to express how he’s feeling. Today, with prompting, he shared that he was angry. While we talked about the people he likes in his day program and the activities he enjoys, he was able to move past a hard moment. When he dug his fingernails into my palm as we washed our hands together while singing Happy Birthday twice, I got him to admit that he was annoyed about the constant hand-washing. So am I. 

There are moments where I think, as I did during 2014’s summer war with Gaza, that I need a special game plan. Then, it was what to do when the siren wailed — essentially how could I protect him even if it meant shoving, yes shoving him to the ground (Akiva’s not a fast “reacter”) and lying on him until the coast was clear. 

This time, the answer eludes me. And discussions of triage and whom to save if the medical system becomes overloaded, terrify and infuriate me. People with disabilities matter, you know. Just like the elderly or others who are more vulnerable medically or emotionally or financially. We are all worthy of extraordinary measures, and yes, protection.

About the Author
Beth Steinberg is the Executive Director and co-founder of Shutaf, Inclusion Programs for Children with Special Needs in Jerusalem. A believer in Jewish camping, Beth is a graduate of Massad and Ramah camps, where she learned the importance of informal education programs as a platform for teaching Jewish and social values. As a parent of a child with special needs, she struggled to find workable, appropriate activities for her child. Beth believes that a well-run inclusion program can help educate and change values, creating meaningful and lasting social change. Beth is also the Artistic Director of Theater in the Rough, engaging audiences with free summer Shakespeare.
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