Guest Column: Autism and the Jewish community

When families with autistic children can't have a bar or bat mitzva, it sends a clear message.

0409-sykes (photo credit: )
(photo credit: )
In so many ways, this was a celebration like any other synagogue celebration. There was the passing of the Torah, aliyot, blessings, the presenting of certificates and gift prayer books. Parents and friends smiled as they watched their children take the Torah and make it their own. There were "mazal tovs" and "yasher koahs" and abundant joy. And yet nothing could be less ordinary or more special than this group of bar and bat mitzva boys and girls and their families. This is Thursday morning at Camp Yofi: Family Camp for Jewish Families with Children with Autism, and for many of these families, this ceremony marks something that some thought was impossible: public celebration of the life of a child with autism in the Jewish community. SEVERAL YEARS ago, at the first Camp Yofi, one family told us about being asked by their rabbi not to return to the synagogue anymore. Why? Their child liked to be too close to the Torah! Can you imagine that? Isn't it the dream of every Jewish educator and leader that a child will want to be close to the Torah, physically and spiritually? And yet, this child's desire was too much for the rabbi. The family left the synagogue. I don't know if they ever found another regular shul, but for at least that one summer they had Camp Yofi, where their child could be close to the Torah and nobody would push him away. All that the congregants would do was smile and cry. On Thursday, multiple b'nai mitzva were celebrated and each child took the Torah, held it for a minute and then passed it on to the next child. They didn't hold a stuffed Torah or a toy Torah, and nobody gasped at the idea that a child with a special need would be given a Torah. Some of the children not only held the Torah, they hugged the Torah - tight, loving, protective hugs - and they knew what they were doing. They cared. Two of the Yofi campers had the most incredible smiles on their faces - angelic - as though God's divine presence was hugging and loving them back. As it was Rosh Hodesh, the celebration of the new month of Elul, there were four aliyot for the Torah reading. Four Yofi campers had aliyot. They held the tzitzit, they held the atzei haim, they said the brachot and they listened intently while one of the parents read the Torah. One of the campers led the first two lines of Shema in Hebrew and another camper sang the translation of Shema in English with the traditional melody. Finally, one camper came up to the front, standing tall, and opened the ark to reveal the Torah to the community. At the end of the service, one of the Yofi campers with the biggest smiles holding the Torah came up as the ark was closing and asked if he could kiss the Torah one last time. As he leaned into the ark to adorn our Torah with love, tears welled up again in the eyes of everyone. Over the years, numerous Camp Yofi families have told stories of congregational meetings where they were told that if their child with autism could not do everything that a typical child could do, if they could not "perform" at that level, then they could not have a bar or bat mitzva at that synagogue. The typical explanation was that if an exception was made for this child, then families whose children had soccer practice or ballet practice or "God-only-knows-what-else practice" which made it impossible for them to devote the time necessary to learn about their heritage would request a special exception, citing the child with autism as the basis for their request. It seems to me that if a family ever did make such a comparison and request, the problem facing the rabbi and the congregation would not be about the exception but about the soccer family - or something far deeper. Either way, citing someone else's soccer practice as a reason to deny a child with autism the opportunity to have a modified ceremony, as though the two are in any way equal, is as abhorrent as it is absurd. WHEN FAMILIES with autistic children are denied the opportunity to have a bar or bat mitzva modified to meet the needs and abilities of that child, when they are given an all-or-nothing option that is not realistic for a ceremony that marks a halachic transition - that happens whether or not there is a ceremony - it sends a clear message, whether or not that message is intended and explicit or completely unintended: Your child's life is somehow less valuable than the lives of other children in the community. Moreover, your family does not deserve to publicly celebrate or be recognized by the community because your child is of lesser ability and lesser value. When we are commanded to imitate God, is this what God meant? Clearly not, and yet this message is sent over and over again to Jewish families with children with autism. Children are being born onto the autism spectrum faster than ever and in higher percentages than any other disorder or disease. The number of Jewish children with autism will only grow, and rapidly, in the years to come. If we, the Jewish community, cannot figure out how to make a place for these incredible, angelic, divine souls in our classrooms, religious school and day school, in our youth groups, in our camps and in our synagogues, we will not only exclude the child but we'll lose the entire family as part of the Jewish people. At a time when we all fret about the dropping Jewish numbers, when organizations and philanthropists alike are casting about trying to figure out how to interest those who are completely uninterested in Jewish involvement in investing millions of dollars in the effort, we are also actively causing the departure of families who are desperate for community and would give far more than they would receive if we would just open the doors and modify our own expectations of children instead of slamming the doors in their faces. At the close of our Camp Yofi bnai mitzva celebration, all of the bnai mitzva stood under a hastily made huppa. Protected by the Shechina, we sang together a song by Josh Nelson, "L'dor Vador": We are gifts and we are blessings/We are history in songs/ We are hope and we are healing/We are learning to be strong/ We are words we are stories/We are pictures of the past/We are carriers of wisdom, not the first and not the last. L'dor vador nagid gadlecha, L'dor vador we protect this chain/From generation to generation l'dor vador these lips will praise Your name/ Looking back on the journey that we carry in our heart/ From the shadow of the mountain to the waters that would part/ We are blessed, we are holy, we are children of Your way/ And the words that bring us meaning, we will have the strength to say: L'dor vador nagid gadlecha, l'dor vador we protect this chain/From generation to generation l'dor vador these lips will praise Your name. ALL OF our children are gifts and blessings. They all deserve and need to be included in and by the Jewish community. This month of Elul is the time for us to wake up and to take a communal reckoning of what kind of people and community we want to be: Will we choose to recognize the blessings that each of our children, typical and with autism or other special needs, are in our lives and in the lives of our people? Will we choose to open our doors and our hearts to these incredible families, to welcome their wisdom and to provide the support they deserve and need? Will we recognize that one size does not fit all, or will we insist on some level of "performance" that excludes children with incredible but different gifts? Will the houses that we build in God's name truly be for the entire Jewish people, or will they be only for those who meet our definition of typical? If the answers to the above questions are always negative, God help us. And if the answers are affirmative , then let this year be one where we reach out to Jewish families with children with autism, welcome them and include them, moving us all one step closer to the onset of the messianic era. The writer, a rabbi, is the founder of Camp Yofi: Family Camp for Jewish Families with Children with Autism. In 2006, he was a recipient of the Covenant Award for Excellence in Jewish Education in part for his work with Camp Yofi. He was the founding director of Camp Ramah Darom and now serves as the director of Camp Ramah in Wisconsin.