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Thursday, August 9, 2012 | return to: cover story


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Finding their place: Special-needs kids and their families embrace Judaism, each other

by liz harris, j. staff

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Linda Stevens and her husband, John Bowers, belong to an Oakland congregation near their home, but they wanted something more — a Jewish environment where their autistic son, Sam, could feel comfortable.

Dafna and Steve Simon of Santa Rosa wanted to be involved in the Jewish community with their children, including sons Zachary, who has Down syndrome, and Jacob, who has Down syndrome and autism.

Fran Judd of Cotati wanted to find a way to re-engage in Jewish life along with her daughter, Sarah, who has developmental disabilities, so she wouldn’t have to “put religious participation on the back burner” anymore.

3_newsThese parents and others have found their answer in “Celebrations,” a program for special-needs children and teens and their families.

Begun five years ago at Congregation Ner Shalom, a small Reconstructionist synagogue in Cotati, Celebrations draws participants from as far away as Pacifica and the South Bay. During the school year, families meet for two hours one Sunday a month and hold at least two special Havdallah events.

The biggest annual event is called “Havdallah with Horses,” a festive outdoor gathering held at the Renaissance Healing and Learning Center in Cotati, which is owned by Judd. There, she provides hippotherapy (therapy involving horses and the equine movements) to physically and emotionally challenged children and adults.

Celebrations is “a miracle for our family — a very real answer to some pretty desperate prayers,” said Dafna Simon. “It came along during a time when our family was in crisis and couldn’t find a way to be Jewishly connected, no matter how hard we tried. Discovering that the Celebrations program existed was the starting point for completely turning our lives around.”

That was several years ago. Now, she says, Zachary, 19, and Jacob, 17, “have a Jewish identity. They hear the blessings, they know what that is.” Zachary, a sociable guy who needs a wheelchair to get around due to a spinal cord injury, “loves his friends at Ner Shalom,” she added. “It’s a wonderful thing to walk into.”

Mary Ann Malinak and Art Magnus with their son, Alex
Mary Ann Malinak and Art Magnus with their son, Alex
The couple’s 26-year-old daughter and 28-year-old son (both born in Israel) also come when possible, especially Maayan, 26, who lives in Sebastopol. At Celebrations, said her mother, “The siblings have a place where they’re not the only ones in a ‘weird’ family.”

Other families feel the same way when they attend Celebrations. We “need the connection of one another,” said Judi Sheppard, whose 16-year-old son, Jacob, has autism. “We walk in each other’s shoes.”

Though Sheppard and her husband, John Hamel, are members of San Rafael’s Congregation Rodef Sholom, where she is active in its sisterhood, Sheppard also feels a strong connection to Ner Shalom and fellow Celebrations families. When she needs help, they are “the people I call,” she said. Her daughter, Aviva, who is a twin with Jacob, sometimes attends Celebrations as well.

While Stevens and her husband still belong to Oakland’s Congregation Beth Abraham, they also joined Ner Shalom “because we know all the people and we feel very comfortable here,” she said.

Her son, Sam, 18, is sometimes disruptive in group situations. But not at Celebrations.

He loves the program, his mother said. “The fact that he can come to this program and be comfortable and not flip out … that’s a big deal.”

Like Sam, who has autism, others who come to Celebrations — who are generally between 10 and 19 years old — can be disruptive in group settings. Sitting through religious services or being “mainstreamed” in a religious school classroom is simply not an option for these kids.

Fran Judd with her daughter, Sarah, and their service dog, Max
Fran Judd with her daughter, Sarah, and their service dog, Max
“We’re all struggling on a day-to-day basis,” Stevens said of herself and other parents in the program. “Ner Shalom has been accepting in a way I have never found before [in Jewish institutions] of us and our children.”

The Celebrations program revolves around the Jewish holidays, offering Judaism in a way the children can relate to — through sensory experience. There’s music, lots of singing, hands-on projects and eating, especially when the gathering is close to a Jewish holiday.

Sheppard, Judd and Stevens first met about 10 years ago, before Celebrations even existed, at the S.F.-based Bureau of Jewish Education’s annual special-needs family camp weekend, held at Camp Newman in Santa Rosa. Another person involved back then was Mary Ann Malinak of Petaluma, whose son Alex, now 17, has severe autism and other developmental delays.

As the camp families got to know each other over the years, “We thought, ‘Wouldn’t it be great if we could get together more frequently?’ ” Malinak recalled.

It was Malinak, along with fellow Ner Shalom member Leslie Gattmann, of Sebastopol, who came up with the idea of starting a program for special-needs kids.

Celebrations got rolling with a grant from the S.F.-based Bureau of Jewish Education, then the Jewish Community Federation, which still provides funding. Malinak, who has a background in special education, volunteers as program coordinator, while Gattman, who teaches special-needs day classes in the Santa Rosa public schools, works directly with the kids.

The first hour of Celebrations is “family time,” as Gattmann called it. Her husband, John Maas, a psychologist with a background in music therapy, brings his electric piano and leads the singing. “We try to make it multisensory,” Gattmann said. “Music is a really strong aspect of the program.” The couple’s youngest son, Julian, 21, who was diagnosed with Asperger’s syndrome as a child, usually helps out.

During the second half of Celebrations, the kids — with the assistance of some teens from the synagogue’s religious school, young adults in the congregation and aides — work on projects such as making flower baskets for Tu B’Shevat or planting parsley for Passover. They also enjoy storytelling, said Gattmann, who reads to them using books supplied by the PJ Library program.

Steve Simon with his son, Zachary, and daughter, Maayan   photos/liz harris
Steve Simon with his son, Zachary, and daughter, Maayan photos/liz harris
Meanwhile, the adults and other family members have their own time and meet with Ner Shalom’s spiritual leader, Irwin Keller. That half hour “has become an enormously important piece of the program,” said lay leader Keller, whom congregants affectionately call “Reb Irwin.”

These parents rarely get down time, let alone time to study Torah, Keller noted. So he tries to zero in on portions “that speak to something in their lives.” And they just shmooze, too; “The families that started it are very bonded,” he said.

Keller also leads the larger group, including those with special needs, in prayers and holiday rituals. Parents give him high marks for tweaking things just enough so that everyone can relate and have a positive experience.

Take “Havdallah with Horses,” held last month. Though strictly speaking, Havdallah can’t begin until the stars come out, Keller knew the crowd would get restless. So he brought his own crafted golden stars, handing them out for willing takers to hold high. Then, wearing cowboy hat, jeans and boots, Keller stood in the center of the group, strummed his guitar and led the singing. They lit candles and said Kiddush.

A brown-and-white miniature horse, along with a few service dogs, joined the Havdallah circle of about 60 people: mothers and fathers, brothers and sisters, friends and caregivers, and most importantly, about a dozen special-needs teens. Nearby, horses quietly munched hay in their paddocks, while broad leafy trees provided a natural arbor for those gathered.

“Every time I’m with this group, it’s magical,” Keller said. “What’s nice about Havdallah, it’s one of the more sensory rituals we do. It’s something that the Celebrations kids really respond to.”

Certainly one of them was Judd’s 17-year-old daughter, Sarah. Her voice rang out as the group began singing a rousing rendition of “Shabbat Shalom.” Every now and then, she’d whoop it up, yelling “Hold your horses!”

“Reb Irwin” Keller leads the Havdallah singing.   photos/lizharris
“Reb Irwin” Keller leads the Havdallah singing. photos/lizharris
Outgoing with a fun spirit, Sarah loves the program, said her mother. “She’s very social. She loves music.”

Judd, a physical therapist and registered therapeutic riding instructor, was thrilled to host the third annual Havdallah with Horses. A former Marin resident who belonged to Congregation Kol Shofar in Tiburon (and chaired its education committee in the 1980s, when her sons attended), Judd said that when she heard about Celebrations, “I ran to it.”

“With the Celebrations class, I really felt that these were my people. It’s a godsend for me,” she said.

Malinak and her husband, Art Magnus, find Ner Shalom a welcoming place for themselves and Alex, who was bar mitzvahed at the synagogue in a moving, very brief ceremony at age 14. “It was very emotional,” said his dad, who serves on the synagogue’s board of directors.

Celebrations, he added, “has been a remarkable thing for the temple.”

Linda Stevens with her son, Sam
Linda Stevens with her son, Sam
Sebastopol resident Anna Belle Kaufman said it was Alex and others like him that drew her and her husband, Lorenzo Valensi, to Ner Shalom. “I thought, ‘This is a place I want to be a member of,’ ” she said at the recent Havdallah gathering. “To be in an atmosphere of inclusivity is better for everyone.” Valensi, who strummed his guitar and sang at the Havdallah, is now the temple’s musical director.

The congregation has always been “very welcoming,” Malinak agreed. But as Alex and some of the other children with intense special needs got older, “it just was harder and harder to be a part of the mainstream situation,” she said. Thus Celebrations was born.

About 12 families come regularly, while others come and go. Malinak would love to see the program grow, and would especially like to see younger children join in. She suspects there are plenty of Jewish and interfaith families who just don’t know the program exists. (Membership at Ner Shalom is not required.)

Celebrations provides families like hers an “incredible” opportunity to be a part of the Jewish community — and to support one another, Malinak explained. Among the core group, the children “have all sort of grown up,” she said, yet none of the families has any intention of leaving.

Jacob Hamel greets Smoke.
Jacob Hamel greets Smoke.
The program brings joy and comfort to her and her husband.

Judi Sheppard echoed the sentiment. “I call these people my family. I’m happy here,” she said. “We have difficult lives. When we connect with one another, we support one another in a way that it was meant to be supported by the Jewish community.”

At the Havdallah, as darkness descended and the air began to chill, families packed up their belongings and headed home.

Judd and the others are looking forward to the resumption of Celebrations in the fall. “As long as it lasts, we’ll be there,” she said. “You feel so isolated, actually, having a kid with special needs.

“You try to make your life as normal as possible — each day is a challenge. Sometimes it’s hour by hour.

“Nobody else really understands until you’ve done it.”


Celebrations will resume in the fall. For more information, contact Mary Ann Malinak at (707) 766-6667 or .(JavaScript must be enabled to view this email address).

 

photo/liz harris


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