autism & bar mitzvah: can it be done?
By Rhona Shore
My twin boys, Ethan and Ryan, were turning 13. Time to plan B’nai Mitzvah – a stressful process at the best of times, but when one of the boys is Autistic, the challenge is truly great.
Ryan was busy with his Bar Mitzvah classes, taking Hebrew lessons and starting to learn to chant his Haftorah – but what role could Ethan play? At times I felt it would be easier to ignore this rite of passage.
Would anyone really question my decision? Most people wouldn’t expect Ethan to participate in a service. Would he really understand what was happening? And in the grand scheme of things would it really have an impact on his life?
Flash back to September 11th 1999.
Ethan and Ryan were born – 12 weeks before their official due date.
We spent over 100 days in the Neonatal Intensive Care Unit. Every day was a crazy ride on the roller coaster. I didn’t know from one moment to the next what the future would hold for my boys. With twins, at each developmental stage, you are constantly comparing them to each other. It soon became clear that Ethan was not keeping up. Initially I felt he was just delayed. I reminded myself that he had been very premature – weighing only 1 pound 15 ounces at birth; of course he would need time to catch up. I realized over time though that it was not about being delayed, it was about being different. No eye contact, repetitive behavior, and terrible eating habits – these were not symptoms of delay.
Ethan was diagnosed with Autism when he was 2 ½ and life hasn’t been the same since. I was overwhelmed with so many questions and concerns. Where was he going to attend school? Would he ever be able to live independently? And the fear every parent of a special needs child has….what happens when I am no longer here to take care of him?
The old saying of: “We make plans and God laughs”, could not be more true in the case of my boys. I grew up in the Calgary Jewish community, going to the Hebrew School, Camp BB, BBYO. As a young adult I taught preschool at the Calgary Jewish Academy (CJA) and ran children’s programs at the Centre. Being Jewish, living Jewishly and working in my community was always important to me. This was something I intended to instill in my own children. I wanted them to have the same Jewish experiences I had had. But what happens when your life takes an unexpected turn and your hopes and plans for your children become something very different? What happens when your child does not start his path at Jewish day school?
Or when you are not part of the social group of moms planning their program schedule at the JCC?
How do you engage a special needs child into a world so foreign to them?
As my life with Ethan evolved, meeting his needs became paramount; his involvement in Jewish life was not so important. Researching the right schools, aide support and recreational supported programs became my new focus. My social circle changed dramatically. My priority was to surround myself with others who could relate to my unique challenges.
The years went on and I developed a comfort in what was emerging as our family’s “normal”. Ethan amazed us each time he hit a milestone or mastered a skill, no matter how far behind he seemed to be when getting there.
As Ethan and Ryan’s 13th birthday approached, I began thinking about how we could have a B’nai Mitzvah ceremony that would celebrate both boys’ abilities. Despite being twins, they are so very unique.
Ethan is the most gentle soul around. Many are described as one who would never hurt a fly; few have ever even contemplated it. He is a creature of habit and routine, but a willing adventurer under the right circumstances. He is a defier of odds, learning to speak well after he was 6 years old. He is honest in his likes and dislikes, sparing no stranger the falsities of small talk, and sparing no loved one the completeness of his heart. Over the years he has demonstrated a greater readiness to learn, explore and express. He also happens to be autistic and with that comes along many harsh realities. Ethan will never a drive a car, have a typical paying job, get married, or live independently but he is Ethan and he is unlike any other.
How could Ethan become Bar Mitzvah? It was clear that our lives had not followed a typical path, so why should this milestone be any different? After meeting with our Rabbi, it was decided we were going to have a Havdallah service. The ceremony would be very small with only our family and closest friends. I talked with my brother, a Speech/Language Pathologist and Occupational Therapist, who fortunately for me, works with special needs children. We discussed how Ethan could play a role in his Bar Mitzvah.
Ethan loves looking at family photos and in my brothers ever creative way he made a DVD with a montage of family photos and the Havdallah blessings and music playing as the pictures cycled through. The hope was that Ethan would be so interested in watching the DVD over and over that he would eventually learn the prayers. Well it worked!
October 20th, 2012
Ethan along with my brother, stood on the Bimah and sang. He was off key and missed a few words here and there but he was so proud of himself and there wasn’t a dry eye in the sanctuary. For Ethan, reaching developmental milestones has been very important and continues to be so, but being a 13 year old Jewish boy and having a Bar Mitzvah was an exceptionally special achievement – one I never expected to witness.
Ethan has taught our family that it is okay to celebrate being different. We work very hard to make sure he has life skills and that he is given the tools to function in our world. But Ethan has also taught us so many critical things:
Tolerance, understanding, patience and most of all – finding joy in the little things.
As we mark Jewish Disability Awareness and Inclusion month, I want to share these thoughts with you. From my experience, I have learned that everyone can have an experience of Jewish life. With creativity and goodwill, we can open our hearts to people with differences – and we will all be better for it.
About the author: Rhona Shore is a native Calgarian and long-time community member. She has worked at the Calgary JCC for 10 years as the Director of Programming; her most important role is mom to Ethan and Ryan.