Double Booked: The High Price of Autism
By Rabbi Rebecca Einstein Schorr
In November 2010, after more than a decade as a congregational rabbi, I sent my congregation the following letter:
A story is told that before a child is born, his soul peers down from the Heavenly Abode and selects the parents who will be right for him. Having voiced his choice to the Holy One, Blessed be God, the soul is then dispatched to his eagerly awaiting parents.
It is a great responsibility, then, to live up to the expectations and needs of our children who, as this legend teaches, have chosen us because of the belief that we will be the best parents for them.
As many of you know, our son, Ben, struggles every day with Asperger’s Syndrome. This developmental disorder affects every aspect of his life and, as he has gotten older, has presented an ever-growing list of challenges. It has become apparent to us and to his medical team that he requires far more support and attention from me than I am able to give while fulfilling my responsibilities to you.
…It is with sadness that we will leave at the conclusion of my contract, June 30, 2011, and resettle on the East Coast. Stepping down from congregational life will allow me to be the mother Ben had selected more than a decade ago.
As always, I pray for the continued growth and strength of our shul.
It was, without a doubt, one of the most difficult decisions I have had to make.
It was, without a doubt, one of the best decisions I have made.
Living in California, we were one of many casualties of a cash-strapped state budget. Services, stretched thin, earmarked the majority of its limited resources, understandably, for those requiring the most support; Ben, like others labeled “high-functioning,” fell into the cracks. He was floundering, and our entire family, including Ben’s two younger siblings, was being pulled down the vortex that is autism.
So we walked away. Like many parents of children with special needs must do. We left our families, our friends, our jobs – and moved to a state with better services and a school district with great autism support services. One with medical benefits that pay for Ben’s medical costs and provides us with a behavioral specialist who visits our home twice a week.
Our story is not unique. Most of the mothers in my support groups (online and in real life) have had to make similar choices. Nearly all of us shoulder a heavy financial burden in order to offer our kids the myriad therapies, activities, and support that insurance (Medicaid or private) does not cover. It is estimated that a family spends an additional $17,000 per year on the expenses associated with a child on the autism spectrum. Many parents – and it is typically the mothers – must leave their jobs in order to care for their child. Furthermore, those mothers who continue to work earn 56% less than mothers whose children do not have any significant medical needs. With one out of every sixty-eight children identified with an autism spectrum disorder, there are thousands of women who fall into that statistic.
Each year, the Center for Disease Control tracks the prevalence of autism, as well as the services available, by state. Some states are making significant strides in creating supportive environments for all of its families. Within the autism community, however, there are some states known to avoid because of the lack of funding and services.
We were fortunate. We found a community where we can live on one salary. But this shouldn’t be about fortune. No parent should have to consider moving in order to find a state that can help bear the financial cost of rearing a child with special needs.
Ordained by the Hebrew Union College-Jewish Institute of Religion, Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow, a contributing writer at The New Normal: Blogging Disability and at Kveller.com, and is the editor of the CCAR Newsletter. She is also a contributor to The Sacred Encounter: Jewish Perspectives on Sexuality (CCAR Press, April 2014), and is the co-editor of a forthcoming title on the impact of forty years of women in the rabbinate. Writing at her blog, This Messy Life (www.rebeccaeinsteinschorr.com), Rabbi Schorr finds meaning in the sacred and not-yet-sacred intersections of daily life. Engage with her on Twitter @rebeccaschorr. Though still a California girl at heart, Rabbi Schorr and her family now call a cornfield in Pennsylvania “home.”
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