When special education teachers work with Martin, they adapt curriculums to help him meet his educational goals. We are trying to take a similar approach to helping Martin fully participate in his Bar Mitzvah service. Jeff and I are not specialists in autism education, but over the years we’ve worked with many speech, occupational, and physical therapists; more than one behavior specialist; several case workers and service coordinators; and countless teachers and support people. Like all parents of kids with special needs, we have had plenty of on-the-job training!
What follows is a working list of some of the adaptations we’re working on for Martin’s big day. A traditional Saturday morning Shabbat service presents a number of sensory challenges for Martin—the best way to set him up for success in reciting Hebrew blessings is to limit overstimulation and figure out ways to provide the kind of sensory input that calms him and helps him focus. Right now we’re working on three major senses: sight, sound, and touch.
Martin is a visual learner. When he was small, we used PECS (Picture Exchange Communication System)—a series of simple visual images that correspond to words and phrases. PECS is designed to replace verbal communication for nonverbal learners, but we used the cards mainly as a way for us to communicate efficiently with Martin. In the early days, I would show Martin cards to let him know what we were going to do (“Car”; “School”; “Hold hands”; “Wait”)—the visual images made sense to him in a way that spoken directions did not, and I noticed an immediate change in him. He complied more readily and seemed visibly less stressed and less likely to bolt (a big problem in the early days). Now that Martin can read, we often use a weekly calendar at home and a daily visual schedule at school to reinforce his routine and help him feel in control of his daily activities.
It made sense to incorporate visual prompts to help him recite Hebrew blessings. Using resources available on jgateways.org, Martin’s teacher Merril created a series of simple images in combination with transliterated Hebrew words and phrases. When he recites his first Aliyah on the morning of his Bar Mitzvah, Martin will read aloud from these pages.
We discovered that using a script like this is not the best strategy when Martin recites the Shema at the beginning of the Torah service, mostly because he is likely to whisper or rush through the words. It also occurred to me that saying the Shema at this moment in the service is really a communal activity—the moment when the person on the bima and the people in the congregation come together to proclaim themselves a community with shared belief. Our goal here is to help Martin speak to the congregation, something that certainly doesn’t come naturally to him. Using a public speaking trick I remembered from high school (speak to the person in the back of the room), I suggested that we make large, poster-sized signs with the words of the Shema transliterated on them. Members of the Steam Team stand in the aisle of the sanctuary, just far enough away so that Martin can read the words but has to look ahead to see them. He is also more likely to raise his voice because he is speaking to the signs instead of down at a script. An added benefit: the members of the Steam Team are quite literally supporting Martin as he recites a powerful blessing that unites the whole community. In rehearsal, this strategy seems to be working!
Like many people on the autism spectrum, Martin has difficulty processing auditory information. He can follow simple verbal directions, but too much talking causes him to shut down. A behavior specialist explained this to me by comparing Martin’s brain to a computer or other electronic device. “If you’re trying to turn on the computer,” he said, “and you keep hitting the on button over and over again without waiting for the machine to process the information, the computer will keep re-setting itself, going back to the beginning every time you push the button.” If we don’t give Martin time to process a verbal direction or question, if we keep repeating it, he often won’t answer at all. But if we wait a full 10 seconds before asking him the question again (try it—it’s not easy!), he is more likely to answer.
A Shabbat service is not exactly a conversation, but it does include quite a bit of call-and-response and in-unison singing of prayers. We’ve noticed that when the congregation starts singing along—something we all naturally do when it seems like the child on the bima is shy or nervous—Martin stops participating entirely. Our working solution to this problem is to create cue cards for the congregation. One shows a simple drawing of an open hand and says “Wait.” Another shows a face with rounded mouth and musical notes and says “Sing.”
Because too much auditory stimulation is difficult for Martin, we’re also thinking about different ways we can reduce the overall sound volume on the morning of his Bar Mitzvah. One simple solution might be for Rabbi Alex to ask the congregation to sing more softly. Jeff suggested that when we sing “Siman Tov u’Mazel Tov” to Martin, we ask everyone to snap their fingers instead of clapping their hands. We are still figuring out how best to use a microphone, if at all. This turns out to be a tricky problem because on the one hand, the microphone makes it easier for Martin’s voice to be heard, but on the other hand, he is often so distracted by the mike (or possibly the sound volume?) that he does not speak at all.
Like many people on the autism spectrum, Martin seeks out deep pressure sensory input. That is, he likes the feeling of something or someone pushing against him. When he hugs us, he really squeezes! He seems to desire this kind of pressure on his head especially—not only does he always wear a baseball hat, he has been known to ask us, as well as his therapists and caregivers, to apply pressure to his head with their hands.
I have been thinking a lot about ways to incorporate tactile sensory input so that Martin is as comfortable as possible on the morning of his Bar Mitzvah service. I found a great kippah online that fits and feels more like a hat than like a traditional yarmulke (as an added bonus, the fabric is both reversible and covered with trains!). I’ve also been thinking hard about the potential sensory benefits of the right tallis. Therapy catalogs sell all kinds of weighted blankets and lap pads that help many autistic people feel calmer or more focused—why not make a weighted tallis? I’m not sure this is the right solution for Martin (he seems much more interested in playing with the tzit tzit than getting input from the prayer shawl itself), but a tallis made of heavier material might be very useful for others on the spectrum. A weighted lap pad could also work well—its smaller size (not much bigger than a tallis bag) makes it easy to take to and from a service. Now that I think about it, why not put weights in a tallis bag and use it as a lap pad?
Thinking about the sensory experience of a typical Shabbat service has been a useful way to approach the puzzle of adapting this particular Jewish curriculum. As Martin’s Bar Mitzvah date approaches, we’ll be brainstorming lots of other ways in. Of course the best part of the planning process for Martin’s big day is the open communication—and open minds—that greet us all along the way.