The last thirteen years have been a journey for my husband Fred and me into a world that we knew nothing about before: the world of autism.
On January 18, 2016, my son George Chaim became Bar Mitzvah at our synagogue, Mishkan Shalom. Like my fellow parents who have experienced their adolescent children going through this intensive rite-of-passage, I am still kvelling, sometimes teary-eyed, as I face the reality that we have already experienced thirteen years of his—and my—life together.
The last thirteen years have been a journey for my husband Fred and me into a world that we knew nothing about before: the world of autism. After a year of watching his developmental delays in speech and social interaction and receiving a series of misdiagnoses, we received his formal autism diagnosis when he was three. Like every parent who hears these words, we experienced stages of denial, fear, grief, and hope—sometimes all in the same afternoon.
What’s anchored us through the last decade is the understanding that though George experiences significant challenges in functioning in the world—from experiencing overwhelm in large crowds or noisy environments, to limited attention span and impulsive behavior, and most importantly, struggling to communicate his internal world with others—we recognize that he is no less holy than any other human being. In many ways, parenting George has allowed both of us to tap deeper into our intuition, to be freed of parental expectations and to experience the healing power of unconditional love.
In planning for George’s Bar Mitzvah, this belief is what we wanted to bring forward—that George’s autism exists on a physical plane and yet he has no obstacles or struggles experiencing life on the spiritual plane. We knew that our extended circle of friends and family joined us in loving George but we also knew that it would take some creative planning to make the idea of celebrating George’s soul, rather than expecting any kind of performance of his skills, to be the focus of George’s Bar Mitzvah. Fortunately, we had two insightful, passionate and compassionate partners: Rabbi Michelle Greenfield, who has taught George in our Celebrations! Program at Mishkan Shalom for the last 5 years and Rabbi Shawn Zevit, Mishkan’s senior rabbi, who has gotten to know George, largely through their musical, intuitive connection, over the last two years.
Autism presents differently in every individual who receives that diagnosis, and so the rituals that we focused on worked very well for George—but may not be appropriate when planning for another young person who has autism (please note: I am happy to discuss a Bar/Bat Mitzvah with any parent, educator or clergy). George’s Bar Mitzvah rituals included:
More music, less talk: George comes to life when listening to music—all kinds of music, from hip hop and rap to country and classical. He loves the singing part of Jewish services and gets bored and antsy during the talking/discussion parts. Like many people with autism, processing spoken language for George is like listening to a second language, while he can process music immediately (Dr. Oliver Sacks writes all about this phenomenon). So for George’s Bar Mitzvah (which was held on a Monday, not on Shabbat), we asked Rabbi Michelle and Rabbi Shawn to focus more on music than talking. The result was tons of ruah, clapping, and singing that George and everyone present really enjoyed.
Out of the sanctuary, into the woods: George’s body calms when he is hiking in nature, walking his yellow lab Hank in the woods, or stomping on the snow. We wanted to bring the joy of George in nature to the service when we sang psalms celebrating nature and God’s presence in the natural world. Our friend Carra Minkoff, a professional video producer and director, took clips we’d taken over the previous six months and edited them into a beautiful montage that we showed as we sang the psalms. Again, even people very close to George expressed that they understood him more after seeing the video.
- Visual Torah: George does not yet write; he primarily communicates to us by choosing icons with words and pictures on a communicative app on his ipad. So for his D’Var Torah, we went with visual expression. George’s Torah portion was Beshallach, which includes the parting of the seas, a story that he knows very well from Passover. George loves color and since he was a toddler, has taken markers and paint and made beautiful collages of color. Our friend Ezra Sherman (Note: it’s helpful to have lots of talented friends) is a graphic artist and made a sketch of the parting of the seas. I sat down with George and Ezra’s sketch and gave him blue and green art materials. What George created is so beautiful. It hung in the sanctuary through the service and Rabbi Michelle used it during an interactive D’var Torah.
Singularity of the Shema: George can utter a few words and can sing a bit. We have sung the Shema every night before bed since he was an infant and he knows it very well. George sang the shema in his service—his voice rang out very clearly. It was a moment in which everyone present felt connected to him and to the power of those worlds.
- The Energy Of Love: We asked our guests to enter the Bar Mitzvah with the energy that we enter every day with George—with open hearts and no expectations. We knew that he might be totally overwhelmed and not even be able to enter the sanctuary. We asked our guests to imagine a day in which George felt held in love and in the power of Jewish tradition. It is hard for me to express, but there was a truly tangible feeling of love that we held in the sanctuary that morning. It was hitting me in waves of joy through the service and I know George felt it.
People have asked me what George’s Bar Mitzvah was like for him. I cannot give you George’s words but I can share this video clip that shows a moment of George’s Bar Mitzvah rehearsal in which he connects to Rabbi Shawn, to Matisyahu, and to a Divine Love that is with him every day.
Gabrielle Kaplan-Mayer directs Jewish Learning Venture's Whole Community Inclusion and loves writing/editing for "The New Normal" and WHYY’s newsworks. Check out her children's cookbook The Kitchen Classroom, written with supports for all kids.