Future Reflections Special Issue: Blind Children with Additional Disabilities
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by Caryn Navy and David Holladay
From the Editor: In many families, religious milestones are crucial turning points, marking a child's entrance to full participation in the community. For a blind child with additional disabilities, such rites of passage may present unique challenges. In the article that follows, David Holladay and Caryn Navy of Massachusetts describe how their daughter Diya prepared to reach one of the most important milestones in the Jewish tradition.
Just before the closing prayers at the service where Diya became a bat mitzvah, she danced joyfully along with other children and adults. The energy and pride bubbled over as a stirring klezmer song celebrated Diya's accomplishment. We were all moved by her poise and the clarity and beauty of her voice as she led parts of the service and chanted from the Torah. We listened with rapt attention to the rabbi's moving description of Diya and her journey toward this day.
Diya came to the United States from India when she was twenty-one months old. As she was getting used to her new home, she encountered Jewish family and community life for the first time. It was during her first year with us, at a community Jewish holiday celebration, that a friend in the congregation who was a speech therapist suggested that Diya might have autism. Our friend also told us that autism is hard to diagnose in blind children since they often have autistic-like behaviors that they outgrow.
Over the next few years Diya's preschool teachers and others often raised the question of autism. Diya was reluctant to play with toys, and she had very limited verbal interactions. She would answer no by saying, "No," but to answer yes she would repeat the question. Diya was finally diagnosed on the autism spectrum by a developmental pediatrics team, but we always felt a little uncertain.
In addition to regular preschool, Diya attended a Sunday preschool class in our congregation for one year. The kids learned about Jewish holidays and other topics with their parents. Though Diya didn't tune into much of the learning, she fell in love with counting from one to ten in Hebrew. Since Diya had a hard time speaking, it was often helpful to give her a structure in which to insert her own words. One structure that Diya liked was the pattern of some Hebrew words followed by, "I am thankful for the gift of . . ."
In regular school a special IEP team helped identify and meet Diya's needs. In an extracurricular religious school program, however, those familiar resources wouldn't be available. Or so we thought. Then, almost by accident, we learned of a program in the Boston area called Etgar L'Noar (Hebrew for "the children's challenge"). This innovative program provided religious school classes for kids with special needs. In her kindergarten year at regular school, Diya began attending a Sunday class at Etgar L'Noar, which later became part of the larger program called Gateways: Access to Jewish Education (<www.jgateways.org>). Diya has continued to attend Sunday classes at Gateways except for one year. One of the things she loves about going to Gateways on Sunday is the long car ride with Daddy.
When Diya first attended the Sunday classes, she was very timid and barely spoke a word. Over the years she became comfortable with the other children, staff, and volunteers, and allowed her light to shine through. One of the things that we love about Gateways is the system of having a teenage volunteer for each student. Diya and her special teenage buddy always bond well. There were no other blind children in Diya's Gateways classes, but the staff and teachers learned more each year about the activities that work well for Diya. Music and dance are at the top of her list.
Gateways has a special two-year Thursday class for kids preparing for the service where they would become a bar or bat mitzvah. (The term bat mitzvah means "daughter of commandment," and bar mitzvah means "son of commandment." In common usage the terms bat mitzvah and bar mitzvah often are used incorrectly to mean the service when a young person undergoes the rite of passage.) Each student has a tutor who works with her/him one-on-one.
When Diya was twelve, we pondered whether to have her prepare to become a bat mitzvah. Would it just be something for us, or would it be meaningful to Diya herself? Diya had attended several bar and bat mitzvah services, including the one for her brother Seth. If she had a bat mitzvah service, we wanted the celebration to help our extended family and community recognize her as an individual.
We took our cue from Diya. Yes, she wanted to become a bat mitzvah. She started the preparation class at Gateways, with long Thursday afternoon drives with her after-school caregiver.
In the program Diya would have to learn to lead some of the blessings, prayers, and songs that are part of our congregation's Saturday morning service. She would also learn to chant a portion of the Torah. The Gateways staff was very uncertain how Diya's training would work. That's where their experienced tutor, Paula Korman, came in. Paula is a pioneer in special-education issues in the Jewish community. "I'll be Diya's tutor," she said firmly.
Diya and Paula quickly felt an affinity with each other. "Diya and I have similarities," Paula observed. "We're both auditory learners. Diya speaks intermittently, but her ears are magnets. I can teach her through her talents for music and singing." Since a bat mitzvah is all about growing up and becoming an adult, Paula worked hard to treat Diya like a young Jewish woman, and she emphasized that role to Diya.
Through hard work with her dedicated one-on-one aide at school, Mrs. Snyder, Diya's Braille skills were starting to blossom. Mrs. Snyder used rhythm to draw Diya into writing with a Perkins Brailler, tapping out the patterns of the dots that formed each letter.
While writing and reading English Braille were coming together for Diya, nobody wanted to make the pot boil over by adding Hebrew Braille to the mix. Brailling out the Hebrew text, transliterated into English, might have been helpful. However, transliteration was never considered an option for any of the other kids, and it was not considered for Diya either. She learned the Hebrew blessings, prayers, songs, and Torah portion of the service orally. Since music and rhythm are among Diya's strengths, she learned well with this method. She did use Braille to practice her answers to questions on her Torah portion for a dialog with Daddy after the chanting.
As she had more practice sessions, Diya became more confident and proud of her accomplishments. Nevertheless, she was still very inconsistent. Some days she spent more time laughing than practicing.
Coordination with our congregation was another major piece to be folded into the preparations. Usually the kids preparing for this milestone have been going to religious school at the temple. The rabbi gets to know them and they have many opportunities to communicate. Our rabbi, Shoshana Perry, didn't really know Diya yet. She worked hard to change that and to plan with us. She has a gift for recognizing the uniqueness of each bar or bat mitzvah student and building the service around the student's special qualities.
Rabbi Perry helped us find a congregation member to work as a local tutor for Diya. The sessions with Paula were in a very different setting, and it was important for Diya to have a few practice sessions in the sanctuary with her local tutor. At home we tried to be more consistent about observing and including Diya in Jewish rituals, such as lighting the Sabbath candles. A few times the rabbi also arranged for Diya to lead the candle lighting blessing with us at Friday-night services. The first time we couldn't hear Diya's voice, but the next time it was clear and strong. Diya also attended bar and bat mitzvah services for other kids in our congregation and for other Gateways students.
It is common for parents to present a tallith (prayer shawl) to their young adult as a gift at their bar or bat mitzvah service. Our search for a meaningful tallith for Diya led us to a wonderful artist in Australia with a business called House of Rose. She made a tallith for Diya partially of silk brocade from India. The painted design, which is also tactual, shows lotus flowers. In India the lotus is a symbol of beauty and growth toward the light. We felt as if our new friend from Australia would be at Diya's bat mitzvah ceremony beside us.
Each bat mitzvah student at our congregation is asked to keep a journal about the mitzvot, or good deeds, she performs. Diya wrote about her effort to listen to the shofar, or ram's horn, during the High Holiday services; the piercing sound was painful to her ears, and she was happy that she was now able to hear it without distress. She also wrote about how much she likes to help and guide other people.
In addition to Diya's own reflections, her mom described a number of incidents that show Diya's compassion. Here are a few excerpts: "Diya watched the movie Praying with Lior. She says that she did not like it. I think the part that was the hardest for her was when Lior was crying at his mother's grave." . . . "Diya tries to make peace between people. Sometimes in the car she would say, 'Talk about George Bush.' Eventually we realized that she said that when David and I were disagreeing about something. She knew that we agreed about George Bush and she wanted to help us be in agreement."
As the date for Diya's bat mitzvah service drew closer, we dealt with countless details to prepare for the service and the party to follow. Sometimes we had to remind ourselves what it was really all about. We had to make sure not to lose our focus on Diya.
On the morning of the bat mitzvah service we gave Diya some of her favorite foods from her gluten-free, casein-free diet. We wondered anxiously whether all Diya's preparation would pay off. As it turned out, we need not have worried. A friend in the congregation wrote to us afterward, expressing the beauty and richness of that extraordinary day in our lives. "Diya was a joy to listen to as she chanted many prayers, and it was wonderful to watch her relationship with Seth, the two of you, and her teacher. She chanted the prayer for Torah before the Torah reading. I thought someone else would read the Torah portion, but how wrong I was! She just continued right into a long Torah portion and the closing prayers. True, her teacher stood with her and from time to time helped her continue, but Diya really did it all. Her voice and demeanor are sweet. There was hardly a dry eye when the three of you spontaneously got up and danced in the front of the sanctuary to one of Diya's favorite songs. Then more joined in, including the many Gateways students present, and soon the entire congregation was dancing in the aisles and at their seats. All in all the day was so good it is off the charts! My tears were tears of pride and joy. Even Rabbi Perry admitted that she was holding her emotions in check, but that she no longer could, and she shed a few tears with all of us."
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