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‘He asked if his Rebbi didn’t like him anymore.’ Special needs families are struggling with the pandemic

Sarah W. has six children. The youngest are three-month-old twins. But they aren’t the most challenging.

Three of Sarah’s children were born with hydrocephalus, a condition in which spinal fluid accumulates in the brain, hindering development. It took years for Sarah’s children to learn how to dress themselves and feed themselves. When they are taught a new subject, it takes them so much longer to understand it.

Even before the coronavirus outbreak, Sarah’s life was a struggle — but it was a manageable one. The kids had a full day school. Volunteers were able to come and help with therapy and other tasks. Now, with social distancing guidelines in place, Sarah’s children are home with her all day, with no outside help. Her children, prone to seizures in the best of times, have been having up to four a day. To make matters worse, they don’t understand why their routines have been interrupted. Her 12-year-old just didn’t get why he wasn’t allowed to go to school.

“He asked if his Rebbi didn’t like him anymore,” Sarah recalled. Only after a lot of explaining and getting his Rebbi on the phone did Sarah’s son realize that he had to stay home due to no fault of his own.

Sarah of course is not alone. Many Jewish families are struggling with developmentally disabled children, and devastated by the news that the camps their children look forward to all year round might not happen this year.

The administrator for a care service that operates housing for people with intellectual disabilities told me that of the three homes he runs, two were handling the coronavirus lockdowns pretty well — those designed for very low-functioning individuals who are mostly not able to dress or feed themselves and can’t communicate verbally. He was surprised that, while before the coronavirus, they had regular outings and activities, the residents of these homes adjusted without almost any hiccups.

The residents of the third house, however, are having trouble with their new reality. These are high-functioning individuals that are able to walk and dress on their own. They mostly don’t need help feeding themselves and can handle a minor stipend. It’s these residents who are having trouble.

For starters, because they watch TV, they are very aware of the virus spreading, which, coupled with neurotic tendencies, made them deeply anxious about getting infected. Then there’s the lockdown, which meant no outings to the zoo, aquarium, or theater, which has been deeply frustrating. There have been regressions, and people responding angrily. Some throw chairs while others just scream and cry until the aides can calm them down.

Then there’s the depression some are noticing in disabled family members, like my friend Aryeh, whose son Avi has Downs syndrome. Avi is usually a bundle of energy, running around delighting the whole neighborhood with his bright smile. But since the lockdown, he has taken to sleeping on the sofa, sometimes for 18 hours a day.

“We first thought that Avi was depressed about not being able to go to school or see his friends,” Aryeh told me. It took Aryeh and his wife a few days to realize that Avi was feverish and, according to their family physician, probably was COVID-19 positive. And even after he recovered, he did not acclimatize right away to his new schedule.

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Still, it’s not all bad news. Sarah, the mother with three children with hydrocephalus, has been deeply inspired by her non-developmentally challenged kids. They have been incredible during this time, volunteering to help whenever possible. It’s been a silver lining watching her other children step up to the challenge, teaching their siblings ADL and ABA skills.

And they’ve been surprisingly effective, too. Sarah’s son Eli, who has hydrocephalus, was having issues operating a door handle, even after weeks of therapy. To her surprise, her son was able to teach Eli a different technique that he picked up fairly quickly.The pride she felt at her son being able to help out his brother made the lockdown almost worth it.

And despite everything, Sarah was reluctant to complain. “Since God has gifted us our special children, my outlook on life is not ‘Wow this is hard.’ These are my kids!” She said. “Neither can I, nor would I trade them for any others. To me, any hardship that comes along with their condition is like a child getting bad marks. It just is a part of reality. God only challenges you if you are equipped to handle it.”

Rabbi Eliezer Brand is a Talmudic researcher and teacher and resides in Brooklyn with his wife, son and two daughters.

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