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When We Needed It Most, Our Jewish Community Stepped Up

When We Needed It Most, Our Jewish Community Stepped Up

A Lifeline After Disability Entered Our Lives

Red and white life preserver with rope against sunny, blue sky with white clouds

 

I recently reconnected with my rabbi from Brooklyn. In the work I’ve been doing at the Union for Reform Judaism – working on the Presidential Disabilities Inclusion Initiative – I’ve been continually reminded of what a lifeline she was to me and my family after disability entered our lives, and how much of the work of inclusion doesn’t require money or equipment.

The day my son was diagnosed with autism at age 2½, we left the neurologist’s office and got back on the subway, intact and identical in every way to the family that had entered the train that morning, except that everything, of course, was different. V had a severe neurological disorder and I had a new job – one I wasn’t equipped to take on, but that I had no choice but to accept. 

Like anyone faced with unwelcome news about your health, the desire to crawl inside your grief and hide is overpowered by the urgency with which you must act.

With autism, the operative words are “intensive intervention.”  You must submerge your grief, working instead against time, trying to change the brain’s function as quickly and early as possible, while it has the greatest capacity to be altered. Your despair, intertwined with hope, all hinges on that one cellular miracle you likely had never even considered: neuroplasticity, the ability of the brain to form new connections.

In my initial overwhelmed stage, I read about a mother in California who asked her church congregation for volunteers to spend an hour a week with her newly diagnosed son with autism.

I had some trepidation. At the time, I attended family services with my young children, but otherwise, I wasn’t that active in my congregation. In desperate need of community, though, it seemed a risk worth taking, so I asked our rabbi if she would be willing to write a letter to congregants to seek their help.

She agreed, and sent out a short, straightforward email explaining our situation:

“The younger son of one of our members has been diagnosed with autism; they are trying to adhere to early intervention while also tending to another child, jobs, daily life. Can anyone help? They are asking one hour a week.”

In the weeks that followed, the calls and emails trickled in from people we knew and complete strangers, ranging in age from 11 to 70. About 15 people – significant for a small congregation – offered help, as did some of our neighbors.

The volunteers included a retired teacher and a few teens with babysitting experience, but no one had training. There was no special equipment, although someone brought a guitar, and one woman brought her yoga mat. A teenage girl came and took our son on a long walk. A couple of labor lawyers who kept rabbits behind their brownstone brought V to play with them. A young mother put her own baby in the care of a neighbor to spend an hour reading him the same stories her daughter enjoyed.

It was improvised and hit or miss. Sometimes V connected, and other times he just stared into space. But it built a community that came to know and love my son – a community that cared about us, that saw our home at its messiest and me at my lowest.

When the original volunteers explained what had happened and shared our circumstances (sparing me the ordeal of having to repeat the story over and over), they talked about our son in terms that were warm and loving. Soon, the connections grew beyond the volunteers to include other congregants and neighbors. They embraced my older son as a child as much in need of attention as his brother. And when we went to family services and monthly potlucks, fellow congregants started to take turns with V, without being asked or seeming to mind. In fact, they enjoyed their time with him, freeing me to eat, talk with friends, and relax – to feel as cared for as my son.

Of course, there were things they couldn’t help with: the guilt-ridden days and sleepless nights, the bureaucratic entanglements and calls to service providers, the grueling negotiations with our health insurance company, and the search for good therapists, as well as the drain on our savings, and the strain on our jobs and relationships that are common to caregivers of children who need extensive supports.

Still, the community they helped create fortified me to deal with the stress that remained when no one was around.

I wanted to tell my rabbi about how wonderful my sons are, that the little boys she remembers both tower over me. V turns 17 next week, and my older son is a 19-year-old college sophomore who plans to major in social work. I wanted to share, too, that the ad hoc, much-needed community she created for us is far more rare than I ever could have imagined and thus, I am all the more grateful to her and to the people who stepped forward at a time when my family and I truly needed the support they made possible.  

URJ Kutz Camp offers Gibush, a unique camp program for teens with Autism Spectrum Disorder (ASD). With motivated high school students as peer-engagers, Gibush campers participate fully in the Jewish camp experience in a safe and nurturing environment that fosters positive self-esteem and social skill development.

This February marks the 10thJewish Disability Awareness and Inclusion Month (JDAIM), a unified initiative to raise disability awareness and support efforts to foster inclusion in Jewish communities worldwide. The Union for Reform Judaism is proud to partner with the Ruderman Family Foundation to ensure full inclusion and participation of people with disabilities and their families in every aspect of Reform Jewish life.

Joan Hocky works at the Union for Reform Judaism. She is a writer with a background in community development, the arts, and education, with a focus on increasing opportunities and resources for underserved and marginalized communities and an expertise in relationship-building and problem solving with diverse stakeholders. When not at work at the URJ, she raises children, vegetables, provocative ideas, and dreams about having more time to write, including on her blog, Grace and Dirt.

Joan Hocky
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