This past month I took Martin to our synagogue’s first All-Religious-School Shabbat service, a family-friendly Friday night Kabbalat Shabbat with songs and class presentations that featured interactive percussion performances. The atmosphere was warm and casual, and the Sufrin sanctuary was nearly full when we arrived more than a few minutes late. I scanned the room, looking for a corner where Martin’s unique sense of personal space wouldn’t invade anyone else’s—and where we would be able to get up and leave unobtrusively if necessary. The room was almost at capacity, though, except for seats at the very front of the sanctuary next to a group of floor drums set up for various class groups to play during the service. As often happens when I don’t have a pre-determined plan for how best to manage a social situation with Martin, I stood with him and pondered my options. As I did this, two things happened: no fewer than three friends offered their seats to us, and Martin said quite clearly “Take a break” and “Water fountain.”
He was telling me that he did not want to be there, and while I heard and understood this message, I was focused on making the service work for him as I felt it should. After all, we’d just arrived. I considered the seats my friends offered to us and politely declined each offer because I feared that Martin’s sensory discomfort might cause him to do something impulsive—grab or throw something—and every seat was packed in close to others who might not understand or appreciate such behavior. So I led him down to the seats in the front row. The drums were a potential problem. Would Martin knock one over? Throw one? How far could he throw one? But there were no other people sitting in the small pew. I thought briefly—hopefully—that Martin might enjoy watching the kids play the drums. I even allowed myself to imagine that he might decide to join them in a breakthrough moment of social interaction.
There was no breakthrough moment. Instead, Martin showed remarkable patience as he tolerated 45 minutes of sensory discomfort. He leaned into my side, pushing his head alternately against my shoulder, arm, or lap. I gave him my scarf, and he intermittently covered his head with it and shook the fringes in front of his eyes. He leaned all the way over and tried to stretch out across the small pew, his feet on my legs and my scarf over his face. No part of the service captured his attention—not the songs, not the drums, not the fun, informal environment. He communicated in every way possible that he did not want to be there, and I responded as parents often do, trying to do what was best for him, trying to encourage him to do what I thought he should want to do. We made it through the service with no major incident, and Martin enjoyed a plate of chicken nuggets and potato latkes at the Oneg Shabbat afterward, but we were both ready to go home, and I made my excuses and left as soon as I could.
Planning Martin’s Bar Mitzvah, like parenting him in general, requires many trips back to the drawing board. I wanted the less formal, more fun and child-focused Kabbalat Shabbat experience to be the perfect thing for him: a way for us to work on an important Bar Mitzvah goal and for him to feel joy in being part of a Jewish community. Instead, as far as I could determine, he felt pain and discomfort. Was it the noise level? A full sanctuary, many voices singing in unison, the microphones necessary for the rabbis to be heard, the children laughing and running around, the drums—all contributed to auditory overload. Was it the time of day? At home, I’d taken him away from the computer—his reward after a long Friday at school—and ushered him off to shul at a time when I’m usually making dinner. Was it the “fun” social experience itself? The hardest lesson, the one I keep having to learn again and again, is that the human interactions so many of us intuitively seek, the social bonds that feel natural and easy for us, are not natural or easy for Martin. It’s not just that he doesn’t understand social cues or that he prefers not to engage in social communication (both are true), but that these things are actually painful to him. I have read that for some autistic people, the human face itself is hard to look at—that trying to read a person’s facial expression is like looking at TV static and hearing loud white noise at the same time. Is this what it’s like for Martin? We don’t know, and he can’t tell us.
But he can—and does—tell us a lot with his behavior and with the choices he makes when left to his own devices. That night at shul he was communicating clearly to me—I just didn’t want to hear it. And this, in a nutshell, describes the challenge of making decisions on Martin’s behalf. All parents must overrule their children sometimes, even most times. It’s part of our job description as parents to teach our children well. But with Martin, our decisions are complicated by confusion. Why does he react a certain way? What is common childhood defiance, and what indicates an essential aspect of his autism? Very often we must also recognize and navigate around our own anxiety, fear, and grief. I would like to say that I have fully embraced Martin’s differences and can celebrate him with no reservations, but I am not there yet.
Indeed, the Bar Mitzvah planning process itself has brought up feelings of wistful regret I haven’t experienced since the early days of Martin’s diagnosis. It’s hard to watch Martin’s peers begin their journey to an independent adulthood—much harder than I thought it would be. And these feelings complicate everything for me. As Jeff and I plan Martin’s Bar Mitzvah, we must stop many times along the way and ask ourselves, Is this important to Martin or to us? If it’s important to us, why is it important? Is our goal to teach him something or provide him with an important skill? Or do we want him to do something because it makes us feel better or more “normal”? These, it turns out, are hard questions to answer honestly.
As soon as I start worrying about not being a “normal” family I know it’s time to step back and re-evaluate. At times like this I’ve learned that it’s a good idea to listen—really listen—to what Martin is saying. The photograph above shows part of an “emotions” chart, designed to help autistic learners recognize a myriad of human emotions using simple line drawings of facial expressions. The last circle is blank to encourage the student to draw his or her own emotion. Martin’s interpretation of this lesson is inscrutable and then, revelatory. The facial expression is playful and mischievous, as if he knows something we don’t know. The description is instructive: “Think.” It is a helpful reminder to stop and consider what Martin has been telling us. Friday night services are difficult. Too much visual and/or auditory input is overwhelming and potentially painful. Saturday mornings, perhaps because of the time of day, perhaps because of the quieter environment, are easier. “Normal” is relative. Lessons learned.