Family Matters: An Ark of Love and Faith
Building love and knowledge of Judaism is always a challenge in raising a child—how much more so when one’s child has special needs.
A sweet, sly grin crosses our son’s face as he recites the blessing for a daughter, his hands atop my husband Len’s head: “Ye’simkha elohim k’Sara, Rivka, Rahel, v’Leah” (“May God make you like Sara, Rebekah, Rachel and Leah”).
Len laughs and pokes Noah, 11, in the belly. “Noooo,” he playfully cries, telling Noah that he is not a girl, he is a man. And so goes the beginning of Shabbat in our house.
Ours is not a religiously observant family, but we try to make Kiddush every Friday night. And we love blessing the children, our weekly gift to them as well as a reminder to us of the gifts we have been given.
Each of our children has a role to play. Ariel, 7, helps me light the Shabbat candles, sometimes with Noah or Sam’s assistance. Len begins the reading of Kiddush, I sing the middle and Noah recites the final blessing. Sam, 13, makes the blessing over the grape juice, and Ariel and Noah share in making the motzi over the halla.
Sometimes Noah will launch into a sing-and-response version of a boisterous Shabbat song we call “Bim Bam,” which can get quite loud in our house. Then we bless our children.
After Noah blesses Len, it is time for dancing. We form a circle in the den and mimic the dances Noah learned from the tot Shabbat service in our synagogue. We go around, moving slowly at first to our own singing of “Hinei Ma Tov U-ma Na’im,” ending in a frantic whirlwind of motion.
I imagine that our Friday-night rituals are similar to those of many Jewish families. But our family includes a high-functioning autistic child—Noah—and his participation is a constant wonder to us, and a profound source of joy.
It was never a question that we would raise our children as Jews, that we would give them Jewish educations and celebrate the Jewish holidays. We have had to learn and adapt along the way, building our own understanding as we tried to teach them. With Noah, we have had to overcome additional challenges.
When he was younger, Noah screamed a great deal and was very upset in new situations. My husband would often leave tot Shabbat services upset with me, with himself and with Noah. “I don’t know why we bring him,” he said to me on a number of occasions. “It’s embarrassing. He’s not learning anything; he just acts out.” I counseled patience, not sure I believed my own advice.
We tried some of the special-needs programs offered by local organizations. They were lovely, but Noah could never tolerate them. He was too distracted, too loud, too uncooperative. Eventually, we just stopped trying.
At home, we continued with our routines, sometimes distraught over Noah’s carrying-on and not entirely sure if we were being fair to any of our children.
Periodically, we would venture back to the synagogue, hoping things would be better. And sometimes they were. We were also struck, as time went by, at how much taller and older Noah seemed than the other children in his group.
This should not have been a surprise to us, since at 7 or 8 years old, he was with 2-, 3- and 4-year-olds. But there was no other place he would fit. He still could not tolerate a more age-appropriate service. He was too far behind developmentally.
Thinking that we should push Noah’s Jewish education a bit more, we decided to register him in our synagogue’s Shalav program for children with different kinds of disabilities. We had privately retained one of the teachers that summer, and she did a fine job with Noah, getting him to read Hebrew and controlling his behavior.
Noah started a tutorial with her that fall, going to Hebrew school Sunday morning just like his big brother. Whereas Sam went into a regular class, Noah went to his own classroom where he met one-on-one with his teacher for an hour.
As time passed, we realized things were not going as well as we had hoped. In the first year, Noah made good headway and was able to read some basic Hebrew. Sometimes he resisted going to Hebrew school, but overall, things seemed steady and progress reasonably good.
In the second year, it became clear that we were getting diminishing returns. One of us had to sit outside the classroom in case the teacher needed help with tantrums. Noah’s behavior was getting worse; his willingness to cooperate started to decline. The teacher we had thought a godsend turned out to be a lovely woman who knew a bit about autism, but not nearly enough about Noah.
When it came time to register for the next year, we passed. The cost was significant and the gains limited. We realized Noah’s real Jewish learning happened at our house, where our weekly rituals spoke to him in ways a one-hour classroom session could not. At home he was with people who loved him, saying familiar blessings, having his special job to do, singing and dancing and being embraced—literally and figuratively.
I continue to be amazed by and in awe of parents of children with special needs who make heroic efforts to integrate their children into Jewish society. There are places where children like Noah are truly welcomed and can be part of real community. I do not fault my synagogue, but it is simply too big to be a real community for our special-needs child, so we have made Noah’s Jewish community our family.
I will continue to search for other opportunities for Noah to be engaged in Jewish learning and experiences. I believe that somewhere out there is a group of parents and children who will embrace Noah and make him a part of our faith. Perhaps Noah will be more ready, too.
Two years ago, i attended the bar mitzva of a friend’s son, a profoundly disabled boy with little speech, but a wonderful smile and loving disposition. I listened to the rabbi talk about how this was not another ho-hum bar mitzva, and I cried. No, I wept.
I left the sanctuary for a few minutes to regain my composure and ran into the photographer for the occasion, whom I knew. “How am I ever going to get through Noah’s bar mitzva?” I asked him. “I can barely get through this one, and it’s not even my son on the bima.”
Through my tears, I recognized what that bar mitzva really was. It was the ultimate journey of love and faith. I do not mean faith in God and religious rituals; our friends are not particularly observant. I mean faith in family, in love, in the friends and community who surround you and let you know that you are always welcome, that it is okay if your child can’t read, or chant, or sit still. He is a Jewish child who matters.
Noah’s bar mitzva date is set for late 2008. I have no idea what he will be able or willing to do on that day. I imagine that we will try to prepare him to read a bit of Torah or haftara. I cannot predict whether he will be up to this challenge or not. I do know that Noah will stand up in front of his friends and family. He will be blessed. He will be counted as a man in the eyes of the Jewish community. And I will know that we got him to that day.
Nina B. Mogilnik is senior program officer at the Altman Foundation. She lives in Great Neck, New York, with her husband, Leonard Gold, and their three children.