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.
