Finding Sanctuary: A Parent’s Story
Madeleine Goldfarb, M.S.W.
I am often asked to talk about my second son, Jonathan. Jon, as he prefers to be called, is a typical thirteen-year-old in many ways. He is very concerned about what his friends think. He wants only Abercrombie and Fitch shirts, Levi jeans, and unlimited rap songs on his iPod. His many accomplishments are exceptional in all ways, because Jon is autistic. The past ten years have been a journey. A journey, if I had the choice, I would have rather not taken. Given that I did not have the choice, I have chosen to face it and fight it head on. The fight began one year before Jon’s diagnosis, as we sought help for the two-and-one-half-year-old toddler, who was drifting away from us. He stopped developing language and his focus on the world was fleeting. Day by day, his very soul seemed to be seeping away and we were powerless to stop it. After what seemed an eternity, we finally heard the word that would influence our lives in ways that few words could. Autism drove us from our home to find a school. Autism depleted our bank accounts and tested our will. Autism shaped our son’s development and progress. Autism turned our world into an obsessive race to get Jon therapy and reverse the path of disability he was traveling. Autism was an avalanche and we were standing at a precipice trying to hold it back.
Autism tested everything from our marriage, our commitments, to our faith.
Religion and even faith was something I did, yet, was not something I necessarily felt. My husband would hold his hands to the sky and cry out, “Eloheeme, why me?” Eloheem is one term to refer to the judgmental G-d. I was far more pragmatic. It was not a case of why G-d had done anything to impose this challenge upon us, but, more of the fact that this challenge was upon us. How will I face it and conquer it? As I said, religion was something I did more than felt. I wanted my children to always have a sense of their religion and I considered my upbringing to be an observant one. In keeping with the traditions of my faith, my family lights candles every Sabbath and recites prayers of thanksgiving for all we have been given. That is a constant and has never changed. I have never had a crisis of faith until it was time for preparation for Jon’s bar mitzvah. The bar mitzvah is a right of passage in the Jewish faith, when a Jewish boy becomes a Jewish man. The transition takes place at the event of the young man’s thirteenth birthday. This event is remarkable in that according to the Jewish faith a young man after his thirteenth birthday is then able to take on the responsibilities of a Jewish male adult. Partially, that obligation of adulthood includes his ability to participate in the daily prayers and being called to read from the Torah (the five books of Moses). This event is typically heralded in by the young man being called up to read from the Torah and giving a speech. We made the decision to join a reform temple, though we considered ourselves more of a conservative family. In the United States, organized Jewish religion can be divided into different groups, the main ones being orthodox, conservative, and reform. The reform movement has a looser structure toward the service than the other two and we felt for my son it would be a better fit. Given Jon’s struggle with learning English, we did not send him to Hebrew School. Every word Jon learned came with a great effort. Once he learned a word he never forgot it, yet every word was learned by rote. We met with the Rabbi and arranged how to get Jon prepared for his bar mitzvah. This was about two years before his thirteenth birthday. We felt comfortable with the decision we had made. Unfortunately, shortly thereafter, the Rabbi took another pulpit out of state. There was a search, and a new Rabbi was selected. We did not think anything would change in reference to Jon. Oh, how wrong we were. continues on next page
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A Journey Into Community
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