Inclusion for Every Child and Family

When my son was diagnosed with autism at age three, I was plunged into an alternative universe in which 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 sensory input. Juggling speech, occupational and physical therapies with a cognitive-behavior system and special diet and supplement regimen, we became, as most parents do who are thrust into this role, experts and advocates, determining to help our child in every possible way.

My beautiful son just celebrated his tenth 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 with a disability is a very flawed system. Therapy for a child cannot work in isolation, when a child is part of an interdependent system that we call family, extended family, community. Parents, grandparents, siblings and cousins all need resources and supports to help them process the challenges of supporting a child with special needs.

When I was depressed or overwhelmed with my son’s challenges, I was not able to carry out his therapies. This is a secret shame that many parents who are asked to shoulder so much, are not able to acknowledge. But because I so much wanted my son to learn and grow, I pushed through my isolation and found resources to help me move through my difficult feelings and begin to embrace the road ahead for my family and me.

One important resource for us were two Jewish preschool programs for children with special needs—Bright Horizons at Temple Beth Hillel-Beth El and then Sinai at Adath Jeshurun. In these programs, we discovered teachers who loved and understood my son and offered ongoing support to us as parents. I connected with other parents sharing my struggles, which was a very important step in moving out of my shock and despair.

As a Jewish educator, I decided to create a program called Celebrations!, a Shabbat program in which children of all abilities could experience a developmentally-appropriate worship service followed by learning with the child, parents and siblings together. Celebrations! became a way for my family to experience Jewish holidays, values and learning together and our program has since been replicated in three other local synagogues.

February is Jewish Disabilities Awareness Month, an opportunity for families, educators, clergy and everyone in our Jewish community to shine light on the unique challenges of our members who have different abilities and to affirm our traditions’ imperative to embrace all people and to see God’s image reflected in every human being, whether or not he/she has physical, cognitive or emotional challenges.

Since living with my son’s disability, my personal and professional life has transformed to focus on education about 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 such a person. When each of us learns about the experience of life with a 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 begin to see the dignified human lives that shine through the diagnosis.

In February, Jewish Learning Venture will host three important seminars for parents and educators on topics related to special needs in our “Whole Child” series and in April, we will host a full day “Openingthe Gates of Torah” inclusion conference. I hope that you will join us for these important events and share them with families you may know who could use some support and understanding from our community.