|Dov and Sam | Photo © Brad Alpernin|
[image: Two white Jewish pre-teen boys, wearing suit jackets and ties
at their Bar Mitzvah service, posing together and smiling for the camera.]
There was a lot of feeling behind that applause. Love, certainly. Appreciation of a job well done. But also amazement. It’s probably safe to say that not everyone in attendance had expected to see what they’d just seen. And here is where the story gets interesting.
But first some background. A Jewish boy becomes a Bar Mitzvah when he turns 13 (a Jewish girl becomes a Bat Mitzvah). Traditionally, the Bar Mitzvah leads a Shabbat (Sabbath) service, the heart of which is when he chants from the Torah (one of the five books of the Old Testament).
As anyone who’s ever done it can tell you, reading from the Torah is tricky, even if you’re fluent in Hebrew. Unlike standard written Hebrew, the Hebrew of the Torah has no vowels. Without them, you can’t know simply by looking at the words how they’re pronounced, or in some cases what words they are. Thus, the only way for a 13-year-old to “read” the Torah is really to memorize it.
But even if you’ve done that, you’re still not done. Because the Torah is not just read, but rather chanted using a complicated melody with origins going back centuries. Again, the best way to do it is to memorize it. And it helps if you can sing.
If you were to design a kid with the characteristics needed to perform well under these circumstances, you would probably wind up with someone very much like Sam. He can recite entire Pixar movies from memory, along with various Kristen Wiig sketches, iPad puppet shows of his own creation, and conversations that happened years ago. Five minutes of Torah was a breeze.
Then, too, Sam has perfect pitch and is a great mimic: he can even match pitch with our bathroom fan and tell when it’s malfunctioning. Once he heard the Torah portion chanted correctly, he was able to chant it note-perfectly.
So my wife and I were confident that when it came to the heart of the Shabbat service, Sam would be in good shape. But still, it would not necessarily be easy. Sam had no real experience speaking in front of a large group. He has significant anxiety. His focus and attention can wander easily, and it wasn’t clear how well he could maintain his concentration over a 90-minute service.
But my wife and I knew that when we set a goal for Sam—or he set one for himself—he could achieve it as long as he had the necessary support. The key was to start early, and to find people who could help Sam learn what we knew he could learn.
Fortunately, there were lots of people who could help. Most important was the fact that Sam would share the service with his cousin Dov, who lives with my sister and her husband a mile away from us in Brooklyn. From the time they were toddlers, my typically-developing nephew was a bit of a Sam Whisperer. When they were two, he would look over at Sam in his car seat, turn back to us, and say matter of factly, “Sam’s not talkin'.”
And ever since then, Dov has been exquisitely sensitive to Sam, knowing not only when talking was too much, but also how to draw Sam out of himself and into the world. Having Dov co-lead the service meant that Sam wouldn’t have to do everything. More important, there would be someone there whom Sam loved and trusted, and who could gently direct his attention to where it needed to be. Of course, my nephew had his own Torah portion to learn and speech to give, but the kid is talented. And he had backup from his younger sister, Sam’s other cousin, who’s also deeply practiced in the ways of Sam, and was sitting in the front row. They were our aces in the hole.
So we were confident Sam could do his part to lead the service. But would it mean anything to him? With all the logistics that come with raising an autistic kid—finding the right school, setting up therapy appointments and swim lessons, building a community that would love and support Sam as he is—we had neglected the small matter of providing Sam with a formal religious education. We observed major Jewish holidays and occasionally went to synagogue, but to the extent that Judaism is the story of a people, it was a story Sam didn’t know.
Fortunately, a member of our synagogue had a lot of experience providing Bar Mitzvah tutoring to kids with disabilities. We went out for coffee with him. “A lot of parents tell me they don’t think their kid will be able to do it,” he told us. Knowing a set-up when I heard one, I joked, “I don’t think our kid will be able to do it.”
But, as we already knew, he could. Sam and his tutor started meeting in March of 2015, a full two-and-a-half years before the scheduled Bar Mitzvah service. Together, using unusual combinations of action figures from Frozen, Monsters Inc., and The Incredibles, they acted out stories from the Bible, a process they would use to make their way through most of the Old Testament by the time of the service. Sam is not a rabbinical scholar, but he now knows his Abrahams, Isaacs, & Jacobs, and his Sarahs, Rebeccas, Rachels, & Leahs.
And the tutor started teaching him Hebrew. Sam picked it up with the same hyperlexic ability that had him reading English at three years old. We were just about set.
The last element of the service was perhaps the most challenging. A Bar Mitzvah gives a “D’Var Torah,” a speech in which he’s supposed to offer an interpretation of his Torah portion. Because of Sam’s language processing delays, he would have trouble understanding his portion. And writing did not come easily to him.
Together with our rabbi, we decided that Sam would offer a few basic thoughts about his Torah portion, but would spend the bulk of his speech focusing on what he loved about his family members who were there to support him.
Though we helped him a bit with the writing and the organization of the speech, the thoughts were Sam's. We often remind others that although Sam presents as a younger child because of his language processing delays, he has as full a personality and thinking as complex as any other young teenager’s. We worked with him to help shape the thoughts we already knew were there. He spoke in an Irish accent and a French accent, to mimic characters that his beloved uncle created for him. He told his cousin that he’s loved him for as long as he can remember, “And I can remember a lot.” When he listed the reasons why he loves me, he started with, “Daddy, you do my laundry.”
Sometimes, he didn’t realize how funny he was being. (I think he’s honestly very happy that I do his laundry.) But for our guests, who had already seen him chant his Torah portion and were now laughing at every line, he was a revelation. The applause washed over him like the climax of an after-school special.
What, exactly, was that applause for? Had they doubted him? In some ways, the reaction of our guests wasn’t a surprise. I have a large extended family, and when we’re together, it’s a bit overwhelming for Sam. He tends to withdraw in those situations, and so many of our guests had only seen him spend a lot of time pacing back and forth at the edges of various ballrooms. They were surprised to see him thriving as the center of attention. And even among our friends who had spent more time with Sam, the reaction tended toward amazement. Sam had outperformed expectations.
The fact is, very few people at the service understood Sam’s capabilities as well as my wife and I did. We always believed he would do well because we knew he was capable and had worked hard. But to our guests, it may have seemed like his performance came out of nowhere.
To some extent, this demonstrates the continuing thrall of the word “autism.” All of our friends and family know of our commitment to autism acceptance, and to a person, they support it. Indeed, many of them have been vital to helping us build a community that is welcoming to Sam. And yet, even having done so, they may have been surprised to see him excitedly greeting guests outside the synagogue. They may not have been prepared to see him seeking out eye contact with each person he mentioned in his speech. No one necessarily doubted an autistic person could lead a Bar Mitzvah service. But perhaps no one expected him to enjoy it so much.
As autism has become more common over the past 20-30 years, autistic people and their allies have tried to move beyond “awareness” to “acceptance.” But there’s still not a lot of talk about “joy.” Too often, there’s a misconception that acceptance means only accepting behaviors that are considered non-standard, or accepting that an autistic person may not hit the same milestones as a non-autistic one. Yet acceptance can lead to moments like Sam's Bar Mitzvah service.
Sam chanted from the Torah so well because of the strengths he derives, in part, from autism. He gave a speech about all the people he loves because they accept him as he is, rather than trying to change him. The end goal of acceptance isn’t a life that you trudge through pushing away your wish that your kid could be typical. Rather, the goal is to find the joy, and to celebrate your child, as he is.