When we announced to our family that we were going to give our autistic oldest son a bar mitzvah, the responses were lukewarm and dubious. “What do you think Nat will get out of it?” my father-in-law asked. It was a fair question, but a difficult one for me to answer. I certainly did not know what Nat would get out of it. Although Nat, now 14, is capable of talking, he is mostly quiet and keeps to himself. It is very difficult to know what he thinks about, and much of what I feel to be true about my lanky blue-eyed teenager is probably based on intuition and faith that there really is someone in there.
Autistic or not, I could not bear for my son’s first adult milestone to slip by. My husband was not raised Jewish, but I was, and when we married we settled on Judaism as our family’s religion. I had not had a bat mitzvah, and of course neither had Ned. Yet, now that we were committed to raising our children Jewish, we felt that we should do something meaningful — and public — for our first child, despite the obvious challenge the autism posed. Or perhaps it was because of the autism: I did not want to let the autism decide for us. And Nat had achieved so much, considering his severe disability, that I felt he — and the rest of us — deserved to mark his accomplishments with this ancient celebration. I didn’t know how we were going to do it, but we were going to do it. There had to be a way.
We would have to work around the autism, which is the eternal wild card in our family life. We have two other sons whom we feel deserve as happy and active a family life as we can give them, and we try to set them the positive example of not letting the autism call the shots. Still, autism does get in the way when we try to do things that most families take for granted. Going on family outings, parties, or trips to the movies require great planning, fortitude, and a lot of chocolate treats. We must thoroughly map out the beginning, middle, and end of any event to avoid his pinching people. Pinching is how he expresses his frustration, when the words are too difficult to access. My other sons are all too familiar with this, and by now they have learned to recognize when they are in the “pinching zone” and even how to help their brother get past it sometimes.
We have learned that there are cycles Nat goes through, of easy periods and difficult periods, like seven years of famine, seven years of feast. During “feast” times, he emerges, talks to us, offering tidbits of himself. He lets us see him and we fall in love, and try to connect with him. Starving as we are to hear from him, we pounce on his every word and spin it into conversation, like straw into gold. Then, just as mysteriously, the phase ends, and he retreats, like when he was a toddler and used to turn his head to the side when I smiled at him as if he could not handle my huge, bright, shining love. Before I knew about autism, I called this “too much joy.” Now he simply says, “No talking,” and the door closes. With the bar mitzvah, I guess I was looking for a way of propping it open a bit longer.
A bar mitzvah, with its highly public nature was risky, certainly. But what did we really need, after all? A place to conduct the brief service (we figured no longer than a half-hour, less than the time of a usual service), a person to lead it, and a plan to rehearse.
My husband and I researched the key elements of a bar mitzvah and whittled them down so that Nat could manage them. There would be a small Hebrew prayer before and after the Torah portion (sermon). Nat could probably do that part using his strong memorization skills. We would light the candles — Nat loved candles — and Nat could say the short Hebrew prayer. We would skip the many songs; it was too much to expect him to wait through them. Like all other families, we would do the parents’ blessing and a speech that would call attention to the wonderful thing that was happening. Only when we felt we had a sense of how the ceremony would go, did we ask a rabbi — the one who had married us — to help. We needed this to be our plan, start to finish, and we needed a special rabbi who would understand this and let us be in charge of it.
We got a bar mitzvah tutor to record the necessary prayers on tape. Most boys readying for their bar mitzvah listen to such tapes, to be sure, but I doubt any could possibly have listened as often as Nat did. Nat would play the tape after school, every day, for nearly a year. He will do just about anything as long as it is familiar, especially if it is written on his calendar. Once he asked a doctor to give him a shot because “Go to doctor. Get a shot” was on his calendar for that day. Predictability trumps even pain. Chocolate rewards help, too, as backup to the calendar. So we marked every aspect of the bar mitzvah on his calendar. We even bought the jacket and tie ahead of time, and had him try them on several times so that he would be accustomed to wearing them.
He accepted this daily routine willingly. On days that I forgot to remind him to go upstairs and practice, he would tell me, “Listen to bar mitzvah tape.” As the day got closer, we had him do several dress rehearsals, even though during the second one he pinched me — because this was not on his calendar.
Another tactic we tried was repetition of the bar mitzvah day schedule. We kept repeating the same thing to him: that on that day, there would be a lot of people in the room, and that he would have to say the prayers that were on his tape, and wait around a lot while Mommy and Daddy and the rabbi talked to all the people. If he did everything that we asked of him, we told him, he would have a chocolate treat when it was over. “Yes, okay, yes,” he would answer, which sounds noncommittal but was actually reassuring in Nat’s case because it was far better than if he had said something more characteristic like, “No wait around. No Mommy and Daddy talk to people.”
We decided that the way to help Nat the most was to have the bar mitzvah weekend be as typical a weekend as possible and thereby not shatter his composure. No guests would stay at our house. There would be no family gatherings the night before. Nat could, as always, wake up before 7 a.m., throw off his pajamas, eat his usual breakfast of Cocoa Krispies without milk, and only when he absolutely had to think about it, get ready for what lay ahead.
The morning of the bar mitzvah, it rained. Not a sleepy June drizzle that coaxes rose blossoms from their buds, but a harsh, driving, Wrath of God kind of rain. I did not take this to be a sign of anything, except that my hair would look terrible. I pinned it up and focused on getting Nat’s tie straight. I repeated the bar mitzvah plan to him while I marveled at his calm. Was he aware of what was to come, other than on the most obvious level? Was he thinking about his bar mitzvah, the momentous event that would declare to our family and friends that he was now to be thought of as an adult? Would this have any lasting impact on him at all? The pain from this question rippled through me briefly and I let it go. He is who he is, I thought.
After the flurry of greeting family and friends who braved the rain in their finery, we moved inside the small ballroom and settled into our places. Nat stood calmly next to me, handsome in his Brooks Brothers navy blazer, his blond hair combed perfectly for once. I had the welcome speech in my hand but when it came time to begin, I could not speak because of tears in my throat. Ned smoothly took over and greeted our guests, and proceeded to light the candles. Nat needed no prompting; he recited the prayer perfectly. At that moment, I relaxed. I knew it was going to be all right. Nat recited his prayers perfectly, barely even needing his customary prompt from the tape. He waited dutifully through the rabbi’s explanation of the Torah reading, which we had chosen for its relevance. It was about Moses, who was uncertain of his ability to carry out God’s wishes, claiming he was “slow of speech.” But God replies that Moses is his chosen man, nevertheless. We were all wiping away tears, by then. All but Nat, of course: He got a bit giggly — sometimes he laughs when people cry, gets his signals crossed — but he pulled himself together. He knew that he had to behave so that later he could eat the brownies that were already being laid out on the buffet.
Our family and friends were ecstatic about what he had done. Max, my middle son, told us that he thought Nat “was cool” for having done something that he did not feel he could do. I had never heard that before. And everyone there felt that Nat had come a long way, and that we had accomplished a brave and wonderful thing. My father-in-law proudly snapped picture after picture. A part of me still quietly wondered how much Nat had done for the brownies, and how much simply because he knew he had to (not all that different from any other 13-year-old, come to think of it). I did not let myself confront the essential question: had Nat ever felt any other, deeper motivation? Did the bar mitzvah mean anything to him?
I got my answer six months later, ironically enough during Christmas at my in-laws house. We were sitting at the dining room table, waiting to begin Christmas dinner, the scent of the pine tree floating over us. My father-in-law started to light the tapers. In the quiet of the room, awash with the glow of the holiday, I heard a vaguely familiar, but out-of-place sound. I looked around, and saw that it was Nat.
Very, very quietly, there he sat, staring intently at the tiny flames, chanting the Hebrew prayer for lighting the candles.
Copyright 2004, Susan Senator