Family Matters

...Practicing in groups of four, they learned the entire Monday morning service...

...If so, he or she could face away from the congregation to avoid being frightened by eye contact with the crowd...

...Patience, energy, commitment, and cooperation between the parents, the rabbi, the cantor, the religious school teacher, and (whenever possible) the disabled person are essential...

...They must form a team with one goal: Develop a beautiful and meaningful ceremony that recognizes the disabled person as a member of the Jewish community...

...Some people manage better if the ceremony is as brief as possible and does not coincide with a regular congregational service or a communal event...

...Daniel was born with so many congenital anomalies that his body had been reconstructed year after year by orthopedists and plastic surgeons...

...During preparation, the team should also identify specific stimuli that distract or over stimulate the person and find a way to work around them...

...The rabbi can stop or modify' the service if the person becomes overstimulated or anxious...

...Working with her religious school teacher and the cantor, Leah learned to read Hebrew and prepared for her bat mitzvah...

...the person's home or a room at his or her school may be more comfortable and less imposing...

...In 1984, when I called the national office of the Reform movement for advice on how to prepare a person with a developmental disability for a bar mitzvah, I was told there were no special education models to copy, no Jewish special education curriculum, and no modified materials or textbooks...

...Are crowds too stimulating...

...In the years since then, increasing numbers of Jewish people with severe disabilities have prepared for similar celebrations...

...Take Daniel, for instance...

...Since his toddler years, Joel had struggled with an inability to speak or comprehend spoken language, obsessions with numbers and letters to the exclusion of all other childhood play, and, most painfully, withdrawal from interaction...

...Aware that one bar mitzvah boy might wander throughout the sanctuary, the rabbi explained to the congregation that the entire room was the bimah for that day...

...Shelley Kapnek Rosenberg, Ed.D., is a consultant for the Auerbach Central Agency for Jewish Education in Melrose Park, Pennsylvania, and the author of Adoption and the Jewish Family (Jewish Publication Society, 1998...

...He could not lift the Torah, so his father lifted it and carried it around the sanctuary with Daniel by his side...

...The rabbi hurried his sermon, finished on time, and then made the observation that Joel's bar mitzvah was a blessing—not just for Joel and his family—but for the community...

...Does he or she need to stand or walk around between the prayers...

...The only requirement of a bar or bat mitzvah is an aliyah, being called up to the Torah to recite the Hebrew blessings before and after the reading...

...Did I? Did I do good...

...Decide where the service will be held and try to practice in that environment...

...A sibling or friend may be happy to share his or her special day...

...Or should the person sit throughout the ceremony because alternating between standing and sitting is overwhelming...

...For Michael, decoding the written language was always an area of strength...

...Little more than a decade ago, no one expected a person with any significant disability to undertake the rigorous training in a foreign language needed to prepare for their bar or bat mitzvah...

...These special gifts can be a means to express Jewish identity...

...Wherever the ceremony will be held, it is helpful to schedule some teaching sessions at the site so that the ceremony will not take place in an unfamiliar environment...

...Some rabbis, Jewish educators, and members of the community question whether a severely disabled person can or should have a bar or bat mitzvah ceremony...

...They may doubt that such a person can sustain the desire for a bar or bat mitzvah...

...In the person's honor, someone else may do even this...

...In 1987 my son Joel stood before 200 congregants, family members, and friends to recite his bar mitzvah Torah portion in English and Hebrew...

...Joel, who was sitting in the front row with his family, then stood up and announced, "Ninety minutes...

...They may not have acquired formal learning comparable to that of people without disabilities, and they may be unable to commit to continuing their Jewish education...

...Are specific sounds upsetting...

...Perhaps the synagogue is not the optimal place...

...Often people with disabilities have unique gifts—a particular love of music or dance, an ability to paint or draw...

...How predictable is this person's behavior...

...At the Jewish Community High School of Gratz College in Melrose Park, Pennsylvania, two classes of young adults with mild to moderate developmental delays have had moving and successful bar/bat mitzvah/confirmation/reaffirmation ceremonies...

...As the rabbi began his sermon, Joel's mother signaled the rabbi that the 90 minutes were almost up...

...Becca Hornstein is a consultant for the Council for Jews with Special Needs, in Phoenix, Arizona...

...Preparation must be completely individualized...

...But accommodating a person with disabilities requires preparation well beyond the usual...

...Beaming with pride, she stood before the congregation, smoothing the fabric of her new dress, admiring the shine on her beautiful new shoes, as she led the prayers...

...A double or even a group ceremony may be desirable for some people with disabilities...

...They recited the blessings before and after the Torah reading and sang a cantata inspired by their writings about their belief in God, their love of Judaism, and the role that their class had played in their lives...

...She was still nearly impossible to understand...

...His parents, friends, and community knew that he had...

...The success of such a ceremony is a triumph for the entire Jewish community...

...The ceremony itself should be designed to take advantage of the person's strengths while avoiding problems...

...Are certain articles of clothing irritating...

...Knowing Joel's limited attention span, for example, Joel's parents told the rabbi that the ceremony could last no longer than 90 minutes from start to finish—not one minute longer...

...Only six years before, Joel had spoken his first words as he emerged from the deep silence of autism...

...But there was not a doubt in anyone's mind that Leah was prepared—and was determined to share her knowledge in her own very special way...

...Our family wanted Joel to have the opportunity to declare his value and dignity before God and community and to celebrate his journey out of the solitude of autism...

...Or consider Michael...

...The Consortium of Special Educators in Central Agencies for Jewish Education (which is affiliated with JESNA Jewish Education Services of North America) meets annually to discuss and share education programs, including ideas for training people with disabilities for bar and bat mitzvah...

...Despite developmental delays, learning disabilities, and disruptively childish behavior, he had learned to read Hebrew, and he chanted his Torah portion with a competence and maturity that amazed all who looked on...

...They are now receiving help...

...Does making eye contact upset the person...

...Her speech was unintelligible to all but her family and teachers...

...Site-specific preparation can be very helpful...

...The bar or bat mitzvah of a person with a disability demonstrates vividly what Judaism is, or should be, about...

...For the year before his bar mitzvah, Michael, who struggles with attention deficit disorder and Tourette's syndrome, tutored a younger learning disabled child in Hebrew...

...One bat mitzvah who is an elective mute (psychologically so fragile that she chooses not to speak aloud except to a trusted person) displayed an original painting that expressed her feelings about her Torah portion...

...Only through our persistent work with teachers and therapists had Joel arrived at this day, having acquired the skills he would need to perform this ceremony of connection with his people and his heritage...

...When he finished, his more typical behavior resurfaced, and he looked at his proud parents in the front row and loudly asked, "Did I do good, Mommy...

...Yet misconceptions, even prejudices, about people with disabilities linger...

...At his ceremony, in addition to fulfilling the traditional requirements, he described the tutoring project, what he had learned, and the success both he and his student had felt And then there's Leah, who was born with Down's syndrome—a petite and vivacious girl...

...Bar mitzvah all done...

...What will make him or her comfortable or uncomfortable...

...Ask what the person realistically can learn and how that learning is best accomplished...

...Nonetheless, they do recognize their emotional and psychic ties to the Jewish people, and they wish to participate in the community...