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Special Needs

After One Year of Isolation, All Jews Have a Taste of How Families With Special Needs Feel

We started off in March 2020 with so much optimism. After several false starts using assisted technology to help my 11-year-old son’s severely delayed speech, he was finally approved by our insurance company for a new device to help him, quite literally, find his voice. We eagerly started looking for yet another new expert to work with our son to learn his new tool.

Our elder son is on the autistic spectrum, with a severe speech delay and processing issues. Due to those challenges, he struggles to both retrieve language and to speak, though his receptive language is far stronger than his expressive language. But this new communication device is a customized touch screen that teaches him to form sentences, and he can touch those sentences to make the device speak for him. 

We were so excited to have potentially found a way for our son to access more language, so that he could include himself more in broader society and be more easily seen as the bright, capable, kind boy we know him to be. Oftentimes, his language deficit, and the frustrated behavior that results, completely overshadow people’s ability to see him as just another kid needing a sense of belonging, as all humans do.

Then came mid-March, the pandemic, and everything shut down in our suburban Philadelphia community, including the specialized school our son attends (and his younger brother’s private school closed as well). With the assurance from our local officials that this would only last a few weeks, we dove into quarantine life with a can-do attitude. We stocked up on supplies as best we could and hurried to upgrade our woefully out-of-date computers to get ready to attempt distance learning. 

As the weeks dragged into months, the effect of being home for prolonged periods showed in both our kids. The loss of routine caused a sharp increase in anxiety in both of them. Our older son suffers from tension headaches, which got much worse, and his self-injurious behaviors, like biting and banging his head, increased dramatically. His younger brother started having regular nightmares, and lost his sunny optimism, becoming sullen and teary.

Zoom school, too, was a disaster. While our younger son missed seeing his friends in person, the situation was even more difficult for our older son, who screamed at the screen and would not sit in front of it. Much of his learning had to be done hand-over-hand, in order to practice writing or reading, which requires one-on-one instruction.

All along, my sense that somehow I — with zero experience with any of this — should be able to “handle” the situation, grew and grew. My friends, too, would reflexively claim to be “fine” in flat, dull voices as our internal fears grew that the kids were not, in fact, alright.

By summer, my mom friends, and I became more forthright with each other. Months of social deprivation had left kids listless and depressed; it turns out online games are not equivalent to in-person interaction. Slowly, I started to say aloud that I wasn’t fine, and neither were my kids, and if I didn’t express my worry it would become overwhelming.

Lest I sound like I’m complaining about spending time with my family, let me assure you, I’m not. I’m grateful for the time we spent reading together, whether it was finishing the Percy Jackson series with my older son or the Dino-Riders series with our younger son. We own all of the DVDs of The Muppet Show and watched and rewatched many beloved episodes together (including Harry Belafonte, Roy Rogers, and Dale Evans).

We were fortunate that our son’s devoted behavioral and speech therapists were willing to see him in person. They even eliminated other exposure risks to make things as safe as possible, which is a blessing many others could not experience.

However, notwithstanding our hero therapists, our sense of isolation magnified, especially as we already felt isolated simply by being a family with special needs. Due to our older son’s therapeutic needs, we did not always have the ability or the energy to do things other families in our community took for granted, like attending Shabbat services on Friday night. 

Fortunately, Zoom allowed us to attend synagogue services more than we had in years, which gave all of us a welcome feeling of tradition and community, even if the Zoom fatigue raged on. As it happens, I had been working for several years to help create a more inclusive community at our Reform temple, as too often, I had to endure disapproving glares from other congregants if my son became overwhelmed or disruptive during services. There were many events that were not accessible to our family, or to other members with a range of other challenges. (For example, families were pursuing “alternative mitzvahs” elsewhere if their children struggled with traditional learning.) 

I feel strongly that the culture of our congregation — which presented a flawless and neatly-packaged image — needs to become a place where people feel comfortable seeking empathy and support. And this, I find, is true of much of the organized Jewish community as well. February may have been Jewish Disability Awareness and Inclusion Month, but the truth is that we should all be aware, all year round, of those within the Jewish community who may require additional support to participate in Jewish life. This can mean having people with disabilities more visibly represented at services, as well as adapting services and programs to meet a wider variety of physical and mental abilities. 

At a basic level, it’s important for Jewish communities to become better attuned to these kinds of challenges. This, in turn, creates a more proactively compassionate culture in which we can offer outreach instead of just ignoring struggles, which, in turn, helps everyone know that their community welcomes and values them just as they are.

Due to the pandemic, I think most of us, on a global level, now have a taste of the isolation and frustration that can come very naturally to special needs families (or really, to anyone with a challenge that makes fitting in just that much harder). We have collectively learned lessons in frustration, in learning differences. Just as our son feels the frustration of not being able to readily verbalize his thoughts, many of us have experienced being muted on Zoom. As we strive to regroup and envision what our society will look like as the pandemic starts to slowly fade, it is my hope we will hold onto this experience of isolation and frustration in order to understand the importance of proactively reaching out to each other, whether to tell the truth when we are “not fine,” or to support others in times of challenge so they feel welcome just as they are. Coronavirus could be a much-needed springboard for compassion and creativity within the Jewish community so that we are not only looking outward for opportunities for tikkun olam. We should also look within our own Jewish community for ways to be more welcoming and inclusive.

 Header image by simplehappyart/Getty Images

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