Living a Jewish Life with Autism Spectrum Disorder
My family loves winter. Just about every weekend between New Year’s and the end of February, you will find us practicing with the Montgomery County Maryland Special Olympics downhill ski team. My husband, Michael, is the head coach and my 23-year-old daughter, Sarah, is an athlete. We find working with Special Olympics rewarding in many ways. For Sarah, who was diagnosed with Autism Spectrum Disorder when she was 3 years old, it has opened up a new world where she has made friends and become more social.
Sarah has always enjoyed being around people, which is most unusual for someone with her diagnosis. She may not necessarily be interacting with those around her, but she definitely likes being in their company. Participating in Jewish life was her first experience in engaging with other people.
When we got Sarah’s diagnosis, everything changed. Many questions went through our heads. Will she ever learn Hebrew? Will she have a bat mitzvah? Will she be confirmed? Will she understand what’s going on as we light the Shabbat candles or celebrate the holidays? We joined Temple Beth Ami in Rockville, MD in 1989 (a full year before Sarah was born) and had no idea what a fortunate decision that was.
As our children got older and we got more involved in temple life, it became evident that Sarah, just like her older sister, needed to start Hebrew School. We met with the head of the religious school. Much to our delight, there was a class especially for children with special needs. We observed the class and suddenly realized Sarah’s future. She would learn all about the holidays, have her bat mitzvah, be confirmed, and lead a Jewish life. We were almost in tears the first night Sarah sang the Shabbat blessings with the rest of the family.
Fast-forward several years when it came time for her bat mitzvah. How would we make it happen? She couldn’t read from the Torah or learn the blessings! The head of our religious school and our rabbi told us that every child who attends the religious school will have a b’nai mitzvah and Sarah was no exception. They even had a special needs tutor!
Her parashah was Pinchas, which talks about what happens when a man dies and has no son to inherit his land. The tutor picked out a verse that mentions daughters getting the land and that was to be her portion. We practiced the blessings and the portion with the tutor weekly. I also sang them with her nightly as she took her bath. It was quite unorthodox, but it worked. The day of her bat mitzvah was filled with so much joy, and there wasn’t a dry eye in the house. When it came time for her confirmation, we worked with the rabbi and the religious school to make that happen, too.
When we first started attending services with Sarah, we told the rabbi that we would take her out if she got too disruptive during services. The rabbi insisted she stay, citing that she had as much of a right to be there as anyone else. To this day, he gives us a smile whenever Sarah gets a bit too enthusiastic. You see, she enjoys belting out the Sh'ma louder than anyone in the sanctuary. Many people who sit near us tell us how contagious her enthusiasm is.
February is Jewish Disability Awareness Month, and I am honored to be able to share our family’s Jewish experience with a child with special needs. Sarah has taught us how to appreciate the little things in life and we wouldn’t have it any other way.
As we prepare to cheer Sarah on to a medal in the Maryland Special Olympics Winter Games, I think back to those earlier days where her future was nothing but questions. Now I realize her life is full of solutions.
Rachel Maryn is a Women of Reform Judaism board member and WRJ Mid-Atlantic District First Vice President.
February is Jewish Disability Awareness Month (JDAM), a unified initiative to raise disability awareness and support efforts to foster inclusion in Jewish communities worldwide. The Union for Reform Judaism is proud to partner with the Ruderman Family Foundation to ensure full inclusion and participation of people with disabilities and their families in every aspect of Reform Jewish life.