Sparks of Light that Keep Hope Alive
“A nation’s greatness is measured by how it treats its weakest members.” – Mahatma Ghandi
My son, Ethan, is 7 years old. He is a brother, grandson, nephew and cousin. He also has autism. I’d like to share with you a bit about our experience and what it’s been like to live with a child with autism.
First, I had to wrap my head around the fact that Ethan had a condition that wasn’t just going to go away and that would need comprehensive, intensive, long-term care. 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 a someone doing the weak, frightened, overwhelmed, isolated 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. Adding to my despair in my new existential living arrangement was an unfamiliar, unwelcome tenant who moved into my brain: worry. Invisible hands wrapped around my throat made it hard to breathe and never went away. The fear didn’t make me more creative or productive or wise; it just stole the everyday joy from life. I became obsessed with, “What will happen to him? What if…?”
At first, I tried to keep the worry at bay through denial. When Ethan didn’t perform the normal milestones — smiling, making eye contact, babbling –it was easy for me to dismiss it as “He’s taking his time. So what?” When the neurologist introduced the terms “Pervasive Developmental Disorder” and “autism,” I thought she just did not know Ethan as an individual — and 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. Did he understand what we said to him? Was he in pain? I ask you to stop and put yourself in his shoes for a moment and imagine what it is like to have a need you can’t express. For example, Ethan could not say if his shoes were too tight, if his stomach hurt, if someone had hit him, if he did not understand something, if he wanted a hug.
To love a child, see him suffer, and not know how to help him — surely one of the worst experiences in the world. My worry muscle became very strong from continual, relentless exercise. I thought to myself, “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. He would tense his entire body when he got excited, squeeze his fists and emit primal sounds. When frustrated, he would bang his head on doorknobs and edges of counters. He became upset in wide open spaces, throwing himself on the ground. When we would lift him up, he panicked and scratched our faces. Ethan’s 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 for play dates. Many other families don’t want their children to play with ours. When Ethan would scream in public, someone would always give us a disdainful look or comment. I felt myself churn — with anger, grief and, yes, worry for my child who can be so frightened by new experiences and people. Would he be a subject of ridicule or pity his whole life? What if…?
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, his sweetness, his potential. A kind stranger at an autism lecture came up to my husband, Steve, and gave him the name of an educational advocate who guided us through a complex system. 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 premier schools in the area that focus on applied behavior analysis (ABA), the one approach shown effective for Ethan. Part of their protocol is to intensively train us, his family, in both school and home settings, so that we can continue teaching all life and academic skills to Ethan around the clock, to pick up where school leaves off.
He is thriving under the scientific, compassionate and firm approach with teachers completely committed to helping Ethan achieve all of his potential. From being a silent, frustrated child who could only injure himself or lash out as a way to communicate, he is learning to speak, to share, to use the toilet, to wait, to ride a bike, to go trick-or-treating, to play a game — and so many other skills that are the foundation of life and relationship. Each one is a small miracle we never take for granted.
We held on to these signs of light and progress, choosing to see God’s hand in them. Just as God is never mentioned in the Book of Esther read on Purim, and yet is understood to be hidden just below the surface and orchestrating every detail over time, disguised as random coincidence, 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, N.J. During the soul-twisting period of Ethan’s evaluations and looking for an appropriate school, a friend we met by chance told us about Friendship Circle and its extraordinary programs for special needs children and their families. When I met with the co-director to sign Ethan up, I welled up (I’m a weeper) and thanked her for all she was doing. She responded to me, “Thank you for letting us help however we can. It is our honor.”
Finally, a social place of compassion and acceptance, where parents often burdened with heavy hearts can meet, embrace and support each other with special understanding. Here, I learned to replace my original equation of “special needs equals other people,” with a new model of inclusion and community.
More examples? Temple Beth Shalom in Livingston has an Inclusion Committee to make services accessible and relevant to all of its members, including families with special needs. The congregation’s cantor, and mom to an adopted special needs child herself, started Shabbat L’Kulam, a monthly Friday night service. Here, families can welcome the Sabbath without worry or embarrassment if their child cries out, can’t sit still, or is otherwise distracting.
MetroWest ABLE offered a seminar to help synagogues learn how to be more inclusive, and I attended as a parent and Beth Shalom member. I learned about a moms’ support group, where I give and receive soothing words and thoughts with others going through a similar course in life. There are also comparable programs for dads, which Steve attends, and for siblings, which Eric sometimes attends.
Friends elsewhere rejoiced at our good fortune of having all of these resources available to us while at the same time lamenting the dearth of such programs in their own towns. Steve and I are fortunate to live in a Jewish community in which the umbrella organization, Jewish Federation of Greater MetroWest NJ, is dedicated to the full inclusion of every member of the Jewish community and supports so many of the programs our family is involved with through MetroWest ABLE.
Being part of a caring, supportive community eases the burden and provides perspective. At a barbeque at the home of one of the Friendship Circle families, I watched as a dad injected a food solution into the feeding tube of his quadriplegic, medically fragile son. The dad watched Ethan trying to dangerously dart out the front door without supervision and Steve and me taking turns at chasing and containing him. I realized that he and I each secretly thought we had the better deal in life, and we each knew the other felt that. We smiled at each other in empathy and perspective.
I am so delighted that February is Jewish Disabilities Month because of the message it sends about our great, small nation. We take our obligation to care for the needy, however defined, so seriously and with full hearts. As my own emotional healing and inclusion within my community have progressed, I have come to realize that my original, painful concept of bad things happen to other people was misguided. I myself am other people and vice versa, I see.
The reality that special needs has revealed to me is the acknowledgment that, the rabbis teach, tzedakah is not “charity” but “justice.” We are all part of this ongoing cycle of giving and receiving and the physics of cause and effect that fuel the engine of life. I offer others an opportunity to give to me and I simultaneously offer comfort and support to them — mirrors into mirrors, ad infinitum. As I receive the energy of loving kindness, I am better able to give it back to those I know and forward to others I don’t know yet. 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 run away. I would have believed I wasn’t up to the task and would be consumed by it, just like Moses, who faced his own burning bush and a God who wouldn’t take a “Don’t pick me!” for an answer.
Like Moses, it was only with the reassurance that I was not 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. The worry about the future that moved into my brain with Ethan’s diagnosis is easing. As we watch Ethan work so hard to accomplish the task at hand and do his very best, we can do no less. 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.
This was originally posted on Huffington Post by Heidi Rome.