My son Ethan is seven years old. He is a brother, grandson, nephew, and cousin. He also has autism. I’d like to share a bit of what it’s like to live with a child with autism.
I never expected to have a child with special needs. That was something that happened to “other people.” I had always considered myself as a strong someone doing the magnanimous giving, certainly not the isolated, scared someone doing the receiving.
With Ethan’s diagnosis, I was evicted from my comfortably superior position and catapulted to that other side of the fence, where no one ever wants to be. Fear stole the everyday joy from life. I became obsessed with, “What will happen to him?”
At first, I tried to keep the worry at bay through denial. When the neurologist introduced the terms “Pervasive Developmental Disorder” and “autism,” I thought she just didn’t know Ethan —what was wrong with her, anyway?
But the worry would not leave. One of the most difficult challenges of Ethan’s autism has been his lack of speech and language. Because he couldn’t communicate, we couldn’t know what Ethan was thinking or feeling. I ask you to stop and imagine what it’s like to have a need you can’t express.
To love a child, see him suffer, and not know how to help him — surely one of the worst experiences in the world. I thought, “Heidi, you can never die. You must be there for Ethan. Who else will care enough to help him?”
As Ethan grew, disturbing behaviors increased. His older brother, Eric, would get especially upset at these outbursts.
Our family has felt the painful social consequences. Kids in Eric’s class have taunted him about his “weird” brother, so he no longer invites school friends to our house. Other families don’t want their children to play with ours.
In the midst of this pervasive fear and loneliness, however, were sparks of light that kept hope alive. Ethan’s early intervention therapists focused on his strengths, sweetness, and potential. The psychologist who evaluated Ethan and confirmed his diagnosis took on his cause as if he were her own child.
He was accepted by one of the tiny number of outstanding area schools that focus on applied behavior analysis and is thriving under the scientific, compassionate, and firm approach of its committed teachers. Each skill he acquires is a small miracle.
We choose to see God’s hand in this progress. Just as God is never mentioned in the Book of Esther, we prayed that all would work out for Ethan’s best interest even when we had no control over the outcome.
The more we looked for angels, the more we found them in our Jewish community of Greater MetroWest NJ. During the soul-twisting period of Ethan’s evaluations, we learned about the Friendship Circle and its extraordinary programs for special-needs children and their families — a social setting of compassion and acceptance where parents often burdened with heavy hearts can embrace and support each other with special understanding. Here, I learned a new model of inclusion and community.
Temple Beth Shalom in Livingston holds Shabbat L’Kulam, a monthly Friday night service where families with special needs can welcome the Sabbath without worry or embarrassment if their child cries out, can’t sit still, or is otherwise distracting.
As a parent and Beth Shalom member, I attended a seminar offered by MetroWest ABLE — Access, Belonging, and Life Enrichment, a program of Jewish Federation of Greater MetroWest NJ — to help synagogues learn how to be more inclusive. I learned about a moms’ support group, where I share with others going through a similar course in life. There are also comparable programs for dads and for siblings, which my husband, Steve, and Eric sometimes attend.
Steve and I are fortunate to live in a Jewish community in which the umbrella organization, the GMW federation, is dedicated to the full inclusion of every community member and supports so many of the programs our family is involved with through MetroWest ABLE.
I am delighted that February is Jewish Disability Awareness Month because of the message it sends; we take our obligation to care for the needy, however defined, so seriously and with full hearts. I am grateful for this.
Ethan’s autism has been a teacher to our family of patience, love, hope, faith, and endurance. If you had told me 10 years ago that I would be on this arduous path of discovery, I would have believed I wasn’t up to the task — like Moses. And like Moses, it was only with the reassurance that I wasn’t alone that I was able to take my power back and do the best I could.
With renewed strength, we face the future with hope and determination. With our loving little guy as our guide, we will never give up pursuing our dream for him and our family: to live a life of purpose, justice, connection, inclusion, fulfillment, and peace. With full hearts and changed minds, with our hands clasped in the hands of friends, we have already attained it.