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bar/bat mitzvahs

For Both My Sons With Disabilities, Planning a Bar Mitzvah Was No Easy Feat

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I am the lucky mother of three wonderfully unique children. Jacob, my oldest, is almost 16. My beautiful, mechanically-minded boy, who figured out babyproof locks before I did, was born profoundly deaf. After two successful cochlear implant surgeries and years of speech therapy, he has amazing listening and speaking skills, which almost masks the fact that he lives with hearing loss and processing issues.

The birth of my second son, Alec, was traumatic. The umbilical cord wrapped around his neck during his birth and he came out blue. He was whisked off to the NICU, where I remember holding him and feeling the sweetness radiate off his body. It was almost as if he had an aura. The doctors stabilized him and we took our sweet boy home. I was relieved when he passed the hearing test and thought this second go-around would be easier.

But that was not to be. Alec started missing milestones and we knew before he was a year old that there were developmental delays. By the time he was 3, my happy-go-lucky boy was diagnosed with pervasive developmental delays. He would not be one of the fortunate kids that outgrew their delays, but he was blessed with an incredible “can do” attitude, a photographic memory and an incredible gift of happiness. We have never seen him get angry.

My free spirited daughter Lily came third. While Lily is what we call “typically developing,” she is anything but typical. My quick, curious, affectionate girl accepts everyone for who they are–we think she is spectacular.

Even though each of our children has different needs, one thing we wanted to provide for all of them was a solid, Jewish education. And my husband and I have tried when we could–signing them up for Jewish preschool and camps and hosting big Jewish holiday celebrations at home.

But so far, their Jewish education has come at a high cost to my emotional sanity. In fact, for both of my sons, the entire Hebrew school experience (through four different Hebrew schools) has been fraught with disappointment and anxiety. Very few of their Hebrew School teachers have been trained in education, and although they may have been experts in bible or Hebrew language, they do not know about differentiated learning or teaching special needs. And though my children are fluent English readers, none of them (including Lily who is an honors student and reads a few levels above grade level in English) have learned to read or to write in Hebrew.

But we’ve pushed on, because we have a dream for our children: to become b’nei mitzvah, despite any challenges we may face along the way. So we planned to start Jacob’s bar mitzvah training early, and our cantor agreed.

And then, on Jacob’s 12th birthday, he contracted the flu and landed on a ventilator. After a scary 10 days, he pulled through. A long recovery followed. He was out of school for a few months and struggled to keep up. He was still battling recurrent pneumonias on top of the hearing and language processing issues. Furthermore, he had been diagnosed with ADHD. So getting him to focus and figuring out if his struggles were attentional or hearing-related was a big challenge. When he did finally return to Hebrew school, I had to decide how I was going to prepare him for his bar mitzvah.

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I realized that I had to rethink what a bar mitzvah actually meant to me. We wanted to celebrate this milestone, but with all of Jacob’s health and learning issues, finding time to teach him more prayers and a haftorah was not happening. So along with our cantor, we decided that Jake could have an aliyah and read a section of the torah. Anything else he could do would be great, but we weren’t going to worry about it. Our new rabbi was onboard as well. Jacob was thrilled with this decision. He was spending a lot of time on his dvar torah and was actually excited to analyze it for the congregation.

Jake’s parsha was Emor–which translates to “Speak.” This was ironic for the boy who worked so hard to learn how to speak correctly. His dvar Torah focused specifically on the section that explained how a kohen (priest) with a physical deformity cannot serve in the Holy Temple. Jake also spoke about how society and Judaism have evolved since ancient times, and how we should evolve as well. He spoke lovingly about all the teachers, therapists and family members who have helped him along the way. He explained that his father taught him not to say “you can’t,” and as a community we should not say it either. Instead, Jake shared, we should focus on what people can do and help everyone do the best they can. That day, people told me they were amazed at Jake’s honesty–about his feelings and about his disabilities.

At Jake’s bar mitzvah we celebrated and marveled at what he had endured just to stand up on the bimah–cochlear implants, speech therapy, a brush with death and constant pneumonias. And yet, that day, there was my silly boy with his 13-year-old grin up on the bimah making us proud. This was what it was all about.

Fast-forward three years–my second son is turning 13 in a few months. Alec is behind developmentally, and though he could memorize and lead a service with no problem, it would not mean anything to him. As opposed to Jacob, Alec has no understanding of what a bar mitzvah actually means, nor is he developmentally ready to take on the responsibilities of an adult within the religious community. And so we’ve been challenged again with finding a meaningful way to mark this moment in Alec’s life.

My husband and I think we have come up with a plan. Alec loves to travel. What better way to have him understand what it means to be Jewish than to go to Israel and have him read Torah and have an aliyah there? He will hear the language, see the Hebrew letters all around and taste the food. This will be meaningful to him. This he can understand and this will be true experiential learning (which works wonders for students with learning differences). We are beginning to plan our trip and I am excited to mark this moment with him in Israel.

Even Lily, who is just 10 years old, is already talking about her bat mitzvah. She is now saying she does not want a traditional bat mitzvah either–right now her plan is to become a bat mitzvah in Hawaii, and celebrate by being in her favorite spiritual place–near the ocean. If she could, she would read Torah barefoot on the beach for her service. And that is OK with us.

My husband and I have learned that a bar or bat mitzvah experience should be as individual as each child. We have learned through our children that these milestones are about the spirituality of the moment and living our traditions in a way that is meaningful to us. And we have learned that while we thought we were passing our heritage down to our children, in actuality, through each of their Jewish educations, they have re-gifted our heritage back to us.

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