Archives in March 2012

After The Boston Globe published iPad Gives Boy a Voice at His Bar Mitzvah, an article about a Merrimack Valley family's moving bar mitzvah experience for their son with autism, Gateways mom Estelle Gomolka wrote a letter-to-the-editor reflecting on an unforgettable day for their family nearly five years ago: daughter Sarah's bat mitzvah.

Dear Editor,

When I read the recent Boston Globe article about the young boy with autism celebrating his bar mitzvah (iPad gives boy a voice at his Bar Mitzvah, March 4, 2012), I knew well the pride and the love his family experienced on that day.

I know because five years ago our daughter Sarah also had a bat mitzvah, something we’d long dreamed of for her but never thought would be possible. For Sarah, who has cerebral palsy and cannot speak but uses an electronic device to communicate, it was the program at Gateways: Access to Jewish Education that made that special day possible. At Gateways, every Sunday she would hear the songs and the stories that connected her to Jewish tradition and her Jewish self, and it was there that she found friends and teachers who became part of her Jewish community. In the two years she spent in Gateways’ B’nei Mitzvah Class, Sarah became comfortable with the ins and outs of the service and her teacher helped her prepare for the kind of bat mitzvah that would be meaningful for her -- and for our family. When her big day finally arrived Sarah was able to recite the prayers of the morning service and deliver her Bat Mitzvah speech through pictures and a pre-recorded voice using a PowerPoint presentation. It was a moment none of us will ever forget! And when her Gateways friends and teachers surrounded her afterwards with happy, supportive mazel-tovs, it taught us so much about the power of community.

Gateways (www.jgateways.org) welcomes children with special needs from across the Boston area into a variety of programs, from the Sunday program Sarah attended to supports in area Jewish day schools and congregations. If you know of a child who might be able to benefit from a specialized approach to Jewish learning, Gateways would be happy to hear from you.

Sincerely,

Estelle Gomolka
Newton

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For Frank Murphy, the likelihood that his daughter would celebrate a bat mitzvah like other Jewish girls her age could be summed up in two words.

“Never. Ever,” he says.

Ten years ago, while recovering from surgery to correct a defect in her heart, Rachel Murphy suffered a stroke and cardiac arrest. She was 2 years old and the lack of oxygen caused irreversible damage to her brain. She lost her ability to walk, speak or eat on her own.

“We went into the hospital with a kid who was healthy and we came out of the hospital with a kid who was completely different. I can’t even begin to tell you what that’s like,” says Murphy. “The only cognitive ability she had before and after surgery was her recognition of music. Music was the one thing that kept her with us – and the guys at Gateways get that.”

Gateways, based in Newton, is a six-year-old nonprofit that provides Jewish religious education to children with learning disabilities – from mild autism disorders to more severe cases like Rachel’s. Every Sunday, Rachel and her father rise at 7 a.m. and drive 45 minutes from Milford to Newton for classes that use picture stories, songs and crafts to make the teachings of Judaism accessible.

Now, when the family celebrates Jewish holidays, they can sing songs Rachel knows by heart. “Without Gateways, she would just be in the room. She wouldn’t be as plugged into our family,” Murphy says.

As she approaches her 13th birthday, Rachel will prepare for a bat mitzvah ceremony, a significant rite of passage for Jewish teens, but one perhaps even more poignant for families like the Murphys.

While federal law mandates that schools must accommodate children with special needs, there are no similar edicts for churches and synagogues, and some parents struggle to find ways to nurture their children’s spiritual needs. Fortunately, over the last decade, many organized religions have taken real steps to welcome all members of a family, even the ones who can’t sit still through a sermon or who scream out at inappropriate times.

All over Massachusetts, religious education curriculums are being modified to reach special needs children where they’re at – developmentally and cognitively. Places steeped in tradition are embracing new technologies, and religious educators say it’s possible – and just as important – to apply the advances made in special education in the schools to help children develop a relationship with God.

“Faith isn’t an intelligence test. There are very few children who can’t understand on some level,” says Cathy Boyle, a Winchester resident who adapted a Catholic religious education curriculum for her autistic son. “I think the churches are starting to realize that there are so many kids with autism and if you turn them away, the families turn away. These kids are the future of our church.”

Rich Robison, executive director of the Boston-based Federation for Children with Special Needs, is also interim pastor at the First Baptist Church in Bedford and the father of two children with Down syndrome. He understands how critical it is for a place of worship to make a child feel welcome.

“A parent can feel terribly wounded and disenfranchised from a community if the very organization you anticipate would profess everyone is welcome is the organization that sets up barriers to exclude,” says Robison. “To some people, it can feel like a punishment from up high. If they can’t accept my child, who will?”

Worldwide Interest in One Mom’s Teachings

At St. Mary’s Parish in Winchester, the secretary says she wishes she had a map to mark with pins all the places from around the country – and the world – that people have called from to inquire about the curriculum that Boyle created. Nebraska, Iowa, Alaska, Northern Ireland and Australia are among them.

After home-schooling her son to ensure that he could make his First Communion, Boyle was approached about teaching a class for children with special needs. She customized an existing curriculum for children like her son who are non-verbal.

Word spread. “If you build it, they will come,” says Boyle. Before long, she was teaching a class of 20 children from 10 different towns. She later traveled throughout the Archdiocese to lead workshops.

Skeptics may question how much the children grasp, but Boyle argues they understand plenty. “The key is to meet them where they are.”

She recalls how one day her son did something he thought was wrong while preparing to receive the sacrament of reconciliation, which involves asking for forgiveness. Instead of using the sign language word for “Sorry,” he signed “God.”

She says she was fortunate to have a priest who supported her son. One Sunday when the Boyles were not there, the priest made note of the fact that an autistic boy was a part of the congregation. “And he said, ‘This boy can be loud sometimes, and that’s all right because faith can be messy,”’ Boyle says. “That kind of backing from the pulpit sends a strong message.”

Exceeding Expectations

Rebecca Redner is a teacher at Gateways who first got involved with its programs as a volunteer one-on-one aide in high school. The experience was so rewarding, she says, that she ended up studying special education at Boston University.

Teen mentors are a key component of Gateways programs, along with small classes and a commitment to tailor programs to individual needs. In addition to classes in Newton, Gateways works with Jewish day schools and individual temples. About 80 percent of the students are on the autism spectrum.

Redner says her students frequently exceed expectations and surprise parents and rabbis with their ability to read Hebrew and grasp the meaning behind Jewish holidays. For instance, while teaching about Passover, Redner showed children the symbolic Seder plate and then began explaining that Passover celebrates Jewish freedom; deeper questions ensued.

“‘Why would God let the Jewish people be slaves if he loved them?’ You never know what they will come up with,” Redner says. “They are always surprising you.”

Marni Smilow Levitt, of Sharon, has two sons enrolled in Gateways programs as students, and another son who volunteers as a one-on-one aide. “Gateways has really become the go-to agency for special education for Jewish children in the Greater Boston area,” she says. “What I really want is for my kids to have a connection to the Jewish community, and that won’t happen unless they have the same opportunities to participate.”

Rabbi Howard Jaffe of Temple Isaiah in Lexington has worked with Gateways to prepare students for bat or bar mitzvah ceremonies, and has found that the children rise to a level higher than anything he imagined.

“I think there has been an awakening in the Jewish community of the responsibility that we have to provide Jewish education to children with special needs,” Jaffe says. “In every instance, Gateways has found a way to reach their child so their child does know what it means to be Jewish. The success is something that allows the parents to know that the kids can succeed in other ways they may not have realized as well. It’s really extraordinary.”

Susan Flynn is associate editor of the Boston Parents Paper.