|Members of the Junior Yachad division are pictured snowtubing in February 2008. With them are advisers from area high schools. Courtesy Yachad|
As the mother of a child with developmental disabilities, Rena (not her name) often feels overwhelmed by her marathon-like schedule of shuttling her daughter to therapists, advocating for her at school, meeting with her caseworker, and pleading with the insurance company to cover the much-needed therapies.
Between private school tuition, tutors, therapy, and medical bills, Rena laments she is facing financial burdens that would leave anyone worried about their future.
|Chani Herrmann leads a Yachad mothers’ suppport group. courtesy chani herrmann|
Worst of all, said the Fair Lawn mother, is the pain she feels when well-intentioned friends in her community prattle on about the relatively minor travails of their typically well-functioning children. “They say they’re so depressed that their son is leaving for college, or they complain about the tablecloths at their daughter’s wedding, and the whole time, I’m biting my lip, thinking about how my daughter will never graduate college or get married,” she said. “They have no idea how lucky they are, and no sense of what I’m going through.”
Fortunately, Rena has found a haven where she can freely express her feelings in a local support group for mothers of disabled children. It’s one of the few places where she knows she will be understood and she doesn’t have to feel alone.
The support group was launched four years ago by Yachad, the National Jewish Council for Disabilities, in an effort to help Jewish mothers of special needs children in New Jersey. The group meets weekly in homes around Bergen County.
Yachad is an agency of the Orthodox Union that serves the broad Jewish community. Yachad, Hebrew for “together,” was founded in 1983 to promote the inclusion of people with disabilities and is the only Jewish group in the country of its kind, said organizers.
The mothers’ support group’s facilitator, Chani Herrmann, who is also director of New Jersey Yachad, is a social worker and Teaneck resident who has been involved in Yachad for more than 10 years. As much as the women have gained from her knowledge and expertise, she said, she has gained inspiration from their strength and warmth. “The women learn from one another, share resources, and gain strength and knowledge from each other’s personal experiences,” she added.
Among the topics discussed at the gatherings are school placements for their children, marriage and communication, the stress of having multiple children with special needs, financial stressors, and long-term planning, said Herrmann.
Herrmann said the feedback from the women who attend is that they “need” this group. “It is a safe place to come and be honest about the things they struggle with.”
In addition, it’s a warm environment where parents can celebrate accomplishments with one another in a special way, said Herrmann.
“We have shared important milestones with one another – births, bar mitzvahs, graduations. Nothing is taken for granted – every event in their lives is an important one, and a child’s success in school or at a job is celebrated by the whole group.”
The women who attend the New Jersey Yachad support group range in age and in their level of Jewish observance, and their children suffer from a broad spectrum of disabilities – including autism, developmental and cognitive delays, and ADHD. Yet their core issues are essentially the same, according to Dr. Jeffrey Lichtman, the national director of Yachad.
“If you have a child with special needs, you experience similar things, whether it’s grief over losing the dream of having a ‘perfect child’ to dealing with challenging school systems and difficult grandparents and communities that make them feel excluded,” said Lichtman.
Yachad also runs a fathers’ support group that meets monthly in Teaneck. The men’s group offers fathers of children with disabilities an opportunity to learn from one another, provide one another with support, and give them a place where they can be understood, said Lichtman.
“We at Yachad/NJCD very much relate to these families and the challenges they experience,” he said.
While the organization provides the support groups to help alleviate some of the stress for parents, Yachad/NJCD also runs an array of other programs such as North American Inclusion Month (NAIM) in February, which aims to educate Jewish communities nationwide to the challenges these families face and to the benefits of including everyone in the Jewish community, he said.
Another division of Yachad/NJCD, called Our Way, for the deaf and hard of hearing, works to promote inclusion of Jewish deaf and their families into the larger Jewish community. (See box above.) The Association of Parents of Jewish Deaf Children provides support groups for families and helps them find Jewish schools, camps, and community programs, said Batya Jacob, the national program director of Our Way.
“Each year, we have workshops for parents on various topics such as peer pressure or bullying, as well as an annual Shabbaton for families with deaf or hard of hearing members,” said Jacob. “The programs are interpreted into American Sign Language as well as oral interpretation.”
While participants of such programs say they learn a great deal from the facilitators and from one another about navigating their way through the educational and social services maze, one of the biggest benefits, they say, is that it alleviates their sense of isolation.
“No one else really understands the stress, the constant pressure, the social awkwardness, and the extraordinary effort we must make in order to get through the day,” Rena said.
Lori (not her name), a Teaneck mother of several multiply disabled children, said, “It’s good to connect with other mothers who share the same issues. There’s a lot of empathy and it provides a good social outlet.”
The world at large often seems oblivious to their needs and those of their children, said Rena. “It’s wonderful to have a group of women we can rely on to hold our hands and accept us. There’s no one who can relate to our situation except those of us who are in it.”