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Autism

My Autistic Son's Bar Mitzvah

A Personal Perspective: Inclusion and accommodations can make anything happen.

Key points

  • Consciously deciding on goals and priorities is the way to succeed in an autism family.
  • Letting go and acceptance must be part of an autism family's philosophy.
  • Each family gets to decide what their own particular success looks like.

On this date, almost 20 years ago, my oldest son, Nat, had his bar mitzvah. No big deal, except that he has severe autism, my husband was not raised Jewish, and I had not had a bat mitzvah myself. And our synagogue at the time did not seem able to support us. And yet, when Nat’s thirteenth birthday rolled around, and families around me started planning blockbuster bar mitzvahs for their kids, I felt a terrible sadness. I had already experienced 13 years of having a very different child from all others around me; you would think I could handle this particular difference as well. But something switched on inside me as I watched my friends and their children being called to the Torah to lead a congregation in those ancient, familiar prayers.

At first, no one in our families could understand why I would want a bar mitzvah for Nat, and indeed, it was hard to explain. All I knew was that Nat had lived his 13 years going away to special schools, not being invited to birthday parties, being stared at, and being generally misunderstood by others. And I, as his mom, had experienced those losses right along with him. I burned with the injustice of a world that would look at this beautiful bright child and then simply dismiss him.

Well, not this time.

I talked to my husband, Ned, who agreed that we should try this. No longer a part of our synagogue, we would do it ourselves. I met with my best friend, Dori, who though a rebel herself also happened to be a Hebrew scholar and bar mitzvah tutor, and I called the rabbi who had married Ned and me. Luckily, this rabbi was one of my father’s oldest friends and a real free spirit, so he was excited to lead the ceremony. None of us knew how the ceremony would look, but the rabbi said that all we really needed was the 13-year-old boy and a Torah. He would provide the Torah.

We knew that the way Nat learned speech was through listening and repetition. So Dori made the “bar mitzvah tape,” as we called it, and we would have Nat practice it daily. I don’t know what he thought of it, this foreign language, but then again I don’t know how he feels about speaking English, either. He learned to talk in his own charming and odd way, and he learned the Hebrew prayers similarly.

I went all out for the event, booking one of Boston’s finest and oldest hotels and inviting the entire family and all of our friends. Whatever our quirky service ended up looking like, this was happening, rain or shine.

And wow, did it rain. We scrambled inside and started to set up. Nat had rehearsed his part over and over, even down to the jacket and tie he would wear, so that everything would be completely familiar to him on the special day, June 4. As we took our places at the front, my father produced his own bar mitzvah prayer shawl and placed it on Nat’s shoulders. At the beginning, everything was uncharacteristically smooth and easy.

Then Nat started laughing. This may not sound bad but back then it was a huge problem, where he would fake laugh and disrupt things, and I would get stressed out, and this would make him laugh even harder. Often the laughter would lead him to become aggressive, too. My heart sank when I saw all the signs of a laugh attack. I silently pleaded with him to stop but I knew how it would go. My heart was racing. And then suddenly, out of nowhere, a thought came to me: It did not matter if he laughed.

Nope, because who was going to care? His loving family? Our dear friends? God?

Everyone there knew all about and loved Nat, his years of struggle to learn, to speak, even just to be. And here he was, standing before 60 people, dressed like a man for the first time, singing out those ancient familiar prayers so that everyone could hear him. Just like Jews had been doing for millennia. Weird laughter or not, this was happening. And somehow Nat must have realized this too. And he stopped laughing. He finished strong.

Afterwards, Nat had his reward—so much of raising autistic children, all children, perhaps—is about the reward at the end, and Nat was no different. Instead of a receiving line, Nat sat a few chairs away from everyone eating brownies and listening to the Lion King. No loud laughing for the rest of the day, and in every single picture he is looking right at the camera.

Twenty years later, Nat is probably the most spiritual one in our family. He makes sure that as many of us as possible gather for Chanukah and Passover. He watches us like a hawk, making sure every ritual is complete, every song is sung. Any time a candle is lit—whether for a Jewish holiday or even at my in-laws’ Christmas table—Nat whispers the Hebrew prayer over the candles. In fact, Nat is very comfortable leading prayers and leading in general. Now he is the front man for a local rock band. His charisma is natural but also hard-won. And I think it all started that day, with his family all around him, believing in him, and his long-gone ancestors somewhere behind him, watching and welcoming him for exactly who he is.

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