Avraham Ballen is a bright 14-year old boy from Monsey with long side curls who loves Torah study, music and sports. He often helps his older brother, Yosef Binyamin, daven (pray). It isn’t that Yosef Binyamin has trouble with the words: on the contrary, it’s that he loves davening so much he will daven the entire siddur (prayer book) from beginning to end if not stopped. Yosef Binyamin is the 17-year old son of Laura and Zev Ballen, an active Yachad member, who has developmental disabilities.
Yachad/ The National Jewish Council for Disabilities (NJCD), is the Orthodox Union’s agency that provides services to people who have disabilities and to their families. Yachad/ NJCD recently held their 23rd annual Yachad Family Shabbaton, which brought together hundreds of diverse Jewish families, who each had a member with a developmental disability. Laura and Zev Ballen brought Yosef Binyamin, Avraham, and their daughter Yocheved, 7, to the Shabbaton. Attending the Shabbaton made Laura Ballen realize, “I’m not the only one who is struggling.”
The annual Family Shabbaton not only allows parents to see what their children normally experience at a Yachad shabbaton – the singing, the dancing, the camaraderie – it is also an incredible resource providing networking opportunities and sessions tailored to the interests and needs of every family member. The shabbaton also provides a respite from the labor of love caring for someone with disabilities entails. But perhaps most of all, the Shabbaton allows us to see not only the organization “Yachad” in action, but the value of its approach, and the fruits we all reap from it. “Yachad” literally means together, and Yachad/NJCD works to foster an inclusive environment, with individuals with developmental disabilities taking their place within the community, to the benefit of the entire community. The shabbaton was made up of individuals who have developmental disabilities and those who do not. Young, old, male, female. All walks of the religious spectrum. But it was one community, together. And the community was so much the richer for all its different parts.
Jason Gross, 25, an outgoing Yachad member with an engaging smile, came to the family Shabbaton from New Haven, CT with his step-mother, Ruth, with whom he lives. Jason got involved with Yachad last summer after his father died, and has gone to an average of two Yachad shabbatons a month since then, often taking the Metro-North train by himself from New Haven to Grand Central Station in New York City, where a Yachad volunteer or staff member will pick him up.
Ruth says that Yachad has helped Jason deal with the grieving process. Jason will sometimes call Yehuda Charm, the director of the New York region, when he feels sad, just to talk. Every Friday before Shabbat, Jason texts his Yachad friends wishing them a good Shabbos, and then his phone starts buzzing with responding wishes. At the shabbaton, Ruth got a chance to meet many of Jason’s friends among the Yachad volunteers and staff, to meet other families, and to gather valuable information – including strategies to meet the legal issues she’s addressing as a stepparent in caring for Jason.
Jason always requests Mordy Labaton, an 18-year-old high school senior from Deal, New Jersey, as his roommate. The two have established a strong bond over the past 10 months. Mordy’s initial interaction with Yachad was as a participant on Yachad’s touring program in Israel, Yad B’Yad, which he thought would be a fun way to spend the summer. Now he says that Yachad has become one the most meaningful and enjoyable ways he spends his time.
Mordy is not alone. Many of the full-time staff started as volunteers and consequently decided to devote their careers to social work, psychology, various therapeutic modalities, and other helping professions. Parents of Yachad members are constantly saying how amazing the volunteers and staff are.
The sessions for parents at the Shabbaton touched on a wide array of issues faced by families of children who have disabilities. In one session for men, things got heated as fathers discussed the stress and frustration caused by the enormous financial, bureaucratic, and legal burdens of caring for and educating their children who have special needs. Another session focused on romance, dating, and sexuality – very volatile issues for any parents, but compounded and complicated by these parents’ children’s disabilities. Another session led by a panel of behavioral experts dealt with the often dramatic problems many parents face in trying to modify their children’s disruptive or defiant behavior both at home and in public. There were also sessions on medications, vocational training for people who have disabilities, working with residential agencies, musical education, dance and movement, speech therapy, estate planning, planning for the geriatric needs of children, and more. Adult siblings, who may one day need to take over responsibilities regarding their disabled brother or sister who has disabilities – or who have already had to do so – sat in on many of the same sessions parents did. At least one brother-in-law was also at the Shabbaton striving to get answers on how to care for his wife’s brother, who has become his obligation. Many of the topics that were covered are addressed in Yachad services regularly offered to the community.
Jacqueline Beier, 52, a longtime Yachad member who has Down Syndrome, sat in on a parents’ session on “Belief in God and Belief in Man in a Difficult World”. She waited patiently to speak as parents discussed their feelings of anger and frustration with the burdens they bore, sometimes wondering where God was and why He gave them these challenges. When Jacqueline finally took her turn, she said, “I don’t feel angry at God, I feel sorry for Him.” Jacqueline said that God must feel so sad, seeing our frustration and suffering, because He’s like a parent who just wants His children to be happy and to do good, but has to let them make their own choices. The session moderator, Rabbi Dr. Tzvi Hersh Weinreb, OU Executive Vice President, Emeritus, pointed out that this was in fact a deep Kabalistic truth. Discussion ensued, and several people approached Jacqueline and her mother, Lynette Beier, 82, afterwards to say that they’d never thought of it that way.
Jacqueline is a friendly, earnest, sensitive woman who lives with her mother in Valley Stream, Long Island. Jacqueline proudly claims descent from Rashi and loves classic musicals like “The King and I,” and books like “Little House on the Prairie.” She enjoys making hook rugs, knitting, and painting watercolors of nature scenes. Jacqueline’s favorite “teacher” from Yachad is Jonathan Fiskus, who comes twice a week to the Beiers’ house. Mrs. Beier says, “He’s taught Jacqueline Hebrew, and they read books together. He is so caring, so fine . . . he rearranges his whole day, when there’s a Shabbaton, just to drive Jacqueline there, since he knows I don’t drive anymore.”
Jacqueline’s best friend is Caryn Pollak, 45. Caryn, who also has Down Syndrome, lives in a Bais Ezra group home in Brooklyn, and has worked full-time as an administrative assistant at the Yachad offices in Manhattan for around ten years; a job that she loves and is very proud of. The two women have been friends since before Yachad began in 1983, and are among the small group of founding members of Yachad. They like to talk on the phone, and always look forward to seeing each other. Jacqueline had lived in the same Bais Ezra residence as Caryn until Winter 2004, when Jacqueline moved back home to live with her mother. Caryn’s father Lester and stepmother Chaya take enormous pride in Caryn’s self-sufficiency. Lester says that one day when Caryn was in her early twenties and still living with them, she came home and told him and Chaya that she wanted to live in a group home and announced, “I made an appointment with a social worker, and she’s going to come and talk to you about it.” Caryn also likes making hook rugs, and she enjoys spending time with friends and family.
As the Yachad family Shabbaton was winding down it was impossible for anyone involved not feel themselves an intimate part of a greater whole. Avraham, Yosef Binyamin, Yocheved, Laura and Zev, Jason, Ruth, Yehuda, Mordy, Jacqueline, Lynette, Rabbi Weinreb, Jonathon, Caryn, and Lester and Chaya were all positively interrelated. The catchword “inclusion” was no longer an ideal but something better: a reality. And the overall lesson – and goal to strive for – was that when people take the opportunity to spend time together, every individual contributes to make a better society.
Eric Ackland is a freelance writer, editor, and writing coach. He is the “Ideas and Innovation” editor for Presentense Magazine. His website is www.magnalityink.com.
The words of this author reflect his/her own opinions and do not necessarily represent the official position of the Orthodox Union.