When my son was diagnosed with autism at age 3, I was plunged into an alternative universe. His childhood became a therapeutic environment in which my husband and I struggled to find the best professionals who could help him learn to communicate and modulate his heightened reactions to his environment.
Juggling speech, occupational and physical therapies with a cognitive-behavior system, a special diet and a supplement regimen, we became — as most parents do who are thrust into this role — experts and advocates, determined to help our child in every possible way.
My beautiful son recently celebrated his 10th birthday and, in the seven years since his diagnosis, I’ve learned more about compassion, love, grief, patience and joy than I could have imagined possible. I’ve also learned that the system that parents enter when a child is diagnosed is immensely flawed.
This is Jewish Disabilities Awareness Month, which provides a distinct opportunity for families, educators, clergy and everyone in our Jewish community to shine a light on the challenges faced by the special needs community.
Since living with my son’s disability, my personal and professional life has been transformed, and I now focus on education centered on special needs and inclusion. How I wish that I had stretched to learn about the experience of people with different abilities before discovering that my child was in need.
When each of us learns about the experience of a life spent with disability — from a friend, community member or by watching documentaries or attending conferences — we begin to remove the unconscious fears around disability that so many of us carry, and we begin to see the human lives that shine through the diagnosis.
Therapy for a child cannot work in isolation. Parents, grandparents, siblings and cousins all need resources and supports to help them process the challenges of supporting a child with special needs.
Important resources for us were two Jewish preschool programs for children with special needs — Bright Horizons at Temple Beth Hillel-Beth El in Wynnewood and Sinai at Congregation Adath Jeshurun in Elkins Park. In these programs, we discovered teachers who loved and understood my son and offered ongoing support to us as parents. (One of the most beloved of these teachers, who embodied the true spirit of Sinai, Barbara Greenberg, died suddenly last week; she will be greatly missed). At sessions run by these programs, I connected deeply with other parents who shared my struggles, which was a very important step in moving out of my sense of shock and despair.
This personal development gave me the strength and motivation to create Celebrations!, a Shabbat program in which children of all abilities could experience a developmentally appropriate family worship service. Celebrations! became a way for us all to experience Jewish holidays together. Our program, started at Mishkan Shalom, has since been replicated in three other local synagogues. This is the sort of program that can help all of us better understand the special needs community and provide us with the insight and compassion to help those most in need of guidance.
Gabrielle Kaplan-Mayer is program director for special needs at Jewish Learning Venture, which is hosting three seminars this month for parents and educators on topics related to special needs. In April, the agency will host its annual “Opening the Gates of the Torah” inclusion conference. See www.jewishlearningventure.org for details