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Ethan Gottlieb: A Gateways Bar Mitzvah Story


May 24, 2011

Ethan and his parents on his Bar Mitzvah dayEthan was only five when his parents first brought him through the door of Gateways’ Sunday morning Jewish Education Program, then Etgar L’Noar. Eight years later, the last two spent on bar mitzvah preparation, the Westford, MA youngster was ready to become a bar mitzvah.

None of the key players – his parents, the Gateways staff and volunteers and certainly not Ethan himself -- would hear of letting his autism prevent him from reaching this milestone of Jewish life.

Gateways’ Jewish Education Program Coordinator Nancy Mager met Ethan when he was eight years old. “He was a bundle of energy,” she recalls. “He didn’t sit still, and spent most of the time walking the halls.”

But what she didn’t know then “was that Ethan was learning -- on his own terms. He was picking up more than we ever dreamed.” And, when he began preparing for his bar mitzvah, Mager knew he’d need a special kind of tutor.

“It took a while to locate the right one but, after a few months, I knew I’d found her.” Vicki Freidman was an experienced special educator, and Mager knew she would “get” Ethan as soon as she began working with him. “Then she’d see what he’s capable of."

“At Gateways Ethan found people who care about him, people who taught him to read Hebrew, people who prayed with him,” says his mom, Marla Richmond.

Ethan and his parents on his Bar Mitzvah dayThis was not to be the Gottlieb family’s first Gateways bar mitzvah however. Older son Jacob who is Deaf became a bar mitzvah in 2007. But his parents knew things needed to be different for Ethan. For one thing, they decided not to have the bar mitzvah in their temple, feeling Ethan’s Gateways classroom would feel more familiar and comfortable. “It’s a place where he’s completely at home,” notes Marla.

His teachers began with file folder activities that familiarized Ethan with bar mitzvah skills such as holding the Torah and wearing a kippah. To help Ethan learn how to participate in his bar mitzvah service, the method of task analysis was used to create visual supports that break down complex tasks such as putting on a tallit and dressing the Torah into sequential steps presented in words and pictures. His teachers also began taping Ethan’s bar mitzvah learning. “We had the laptop’s video-camera rolling during each lesson so we would be able to show his friends and family how much progress he’d made,” says Mager.

Viewing the videos, it became obvious that Ethan was making tremendous strides, reading prayers in both English and Hebrew. “It was more than we ever thought possible,” she adds. “And we were absolutely delighted. Now that we knew the knowledge was in there, we had to figure out a way to get him comfortable enough to lead a service in front of his friends and family.”

His teachers began adding more sitting time each week so that, by the time Ethan’s bar mitzvah day arrived, he was able to sit through the entire service. What’s more, though he was most comfortable in jeans and a T-shirt, Ethan gradually began wearing nicer and nicer clothes to class to prepare him for the sports coat, button-down shirt and khakis he would don for his bar mitzvah.

Ethan and his parents on his Bar Mitzvah day“All this was huge, but the absolutely best part for Ethan was working with Vicki,” says his mom. “From the beginning, she was attuned to what was going on with him. She knew when he could pay attention, she knew when he had to get up and move. Most of all, she knew he could do it.”

Ethan showed everyone there that day--family, friends, Gateways faculty and students--the fruits of his Gateways preparation, and his hard work. When he walked in, he slowly paced the room. “The look on his face showed so clearly: ‘I know all these people and I know they’re all here for me,’” said his mom.

Gradually, deliberately, Ethan led the Torah service. He led it quietly – it had been decided a microphone would be distracting for him – with Freidman and Rabbi Karen Landy by his side, along with his parents. “G-d could hear him and I could hear him,” Richmond says. “And when G-d hears you and your mom hears you, that’s what counts.”

Ethan and his parents on his Bar Mitzvah day“Everyone there was beaming at him,” Mager says. “Ethan, and each child we see through the bar/bat mitzvah process, teaches us something. All those years we did not know how much he was learning. But that day he showed us he had been listening–-and learning--all along.”

His father Bob Gottlieb also looked on with pride. “He knows these kids. He sings along. He’s happy there,” says his dad. “Gateways is a good place for him. Ethan could not have had a bar mitzvah if it weren’t for Gateways. Without Gateways, he wouldn’t have had a Jewish education at all.”

Nearly a year has gone by, and Ethan still wakes up Sunday mornings, puts on his Gateways T-shirt and tells his parents, “Time to go to Sunday school.” He also takes great pleasure in looking at the pictures of his special day. “That’s me,” he smiles, pointing to a photo of himself running up the hill, his tallit flying behind him. “That’s me.”

 

Category: Profiles

 

Gateways' Seven Strategies for a Successful Seder for All Learners

April 7, 2011

  1. Boy with Seder plate file folder activityPreview. Show-and-tell a social story, a customized children's picture book designed to prepare the child for the Seder experience, reducing the chances of being overwhelmed.
  2. Pre-feed. Make sure the kids eat before the Seder – preferably a protein and complex carbohydrate, nothing sugary. This will extend their patience (especially since many pre-meal traditions – horseradish, charoset and gefilte fish – are not always kid-pleasers.)
  3. Program. Whether in words or pictures -- or both -- the child should have a schedule of the Seder to refer to. That way, even if they can't read the Hagaddah, they enjoy the confidence boost of being able to follow along, alone or with your help. (Click here for Gateways' printer-friendly illustrated Seder schedule)
  4. Plant the Feet. Make sure a child's chair allows them to touch the floor (or a steady chair rung) to ensure support, balance and longer sitting tolerance. Try to create 90 degrees at the ankles, knees and hips, for sitting squarely at the table.
  5. Prevent. Heavy silverware might prove difficult for children with grip challenges to manage and tall glasses or wine cups are spills waiting to happen. Make sure there's child-sized flat wear and a Passover sippy cup (why not decorate?).
  6. Participate. Having an important role, such as carrying the towel around while everyone washes, provides movement breaks and a purpose in what can otherwise seem a grown-up occasion. Another important job: "taking care" of Baby Moses: a doll wrapped in a blanket in a woven basket awaiting rescue from the Nile.10 plagues depictions
  7. Plague Play. The ever-popular plagues bag can add fun to any Seder. But fine motor difficulties can make tiny toys frustrating. Check out the plague finger puppets on the market, make your own with old socks or set up a magnetic or Velcro board, with plague symbols the children can attach. (Click here for printer-friendly plague symbols)

Click here for the full menu of Gateways' printer-friendly Passover resources.

Click here for a printer-friendly version of this article.

Category: Educational Practices

 

Voice at the Gates: Rachel Murphy

April 5, 2011

Rachel holding the Torah with a smileThis year the Murphy family is looking forward to celebrating the Seder in their Milford home. Which will be a huge improvement over last year.

Last year Frank and Elisa, their younger daughter Hannah, a family friend and an on-duty Jewish nurse had Seder on aluminum trays at the nurses’ station at Children’s Hospital. A few feet away, 11-year-old Rachel was attached to multiple machines all working hard to stabilize her seizures and keep her vitals strong.

Seizures are just one result of a stroke Rachel suffered at 18 months. Brain, muscle and nerve damage also confine Rachel, now 12, to a wheelchair and restrict her speech, movements and eyesight.

But despite her challenges, this is shaping up to be the year when Rachel gets to participate in her family Seder in brand new ways. Thanks to Gateways and Rachel’s DynaVox – a computerized device providing dynamic voice output for people with speech and communication impairments.

Now in her fifth year in Gateways’ Sunday morning Jewish Education Program, Rachel is able to follow along in class with her trusty DynaVox. There the user-friendly visuals her dad downloads from Gateways' online Resource Center circumnavigate the visual and speech challenges that used to prevent her from participating in class. The device literally gives her a voice. “She’s able to connect with what she sees on the screen and what it means,” says her dad. “And that opens up infinite possibilities.”

What’s more, over and above the technology that’s allowing her to learn in new ways, just being in class on Sunday mornings presents Rachel with a new world to inhabit, says Frank. “It takes time to figure her out and see the real Rachel inside,” he adds. “Gateways teachers and teen volunteers are gifted and caring and being with her buddies gives Rachel a sense of community.” The family will also long remember the video Rachel’s Gateways classmates made for her when she was in the hospital.

“Gateways provides that key part of her Jewishness she would never otherwise have,” he adds. “Now when you show her the picture of the Sh’ma, Rachel covers her eyes. It means something to her. And that’s huge.”

Something else that means a lot to Rachel is music, specifically Jewish music.

Murphy family at Gateways trip to Lookout FarmIndeed, recognizing and responding to music “may be the most profound way she interacts with her world,” says her dad. Every Sunday morning she wakes up singing the Gateways welcome song, The Week is Here. "And now we sing Gateways songs at our holiday events. They’re very much part of our family.”

Compared to last year when she wasn’t able to sing or even know it was Passover, Rachel and her family are hoping for a joyous celebration. “Last year we were like the refugees in the Passover story,” says Murphy. “Now we pray everyone is healthy so we are free to celebrate together in our own home.”

The Murphys are ready: They’ve got a CD of Uncle Eli's Passover songs, a box o' plagues they filled with plastic cows sporting “boils” and some cheap sunglasses signifying darkness – along with the digitalized version of Gateways’ hagaddah Rachel’s dad has downloaded onto her DynaVox. (Click here for Gateways’ Seven Strategies for a Successful Seder for ALL Learners.)

“If we weren’t part of Gateways, Rachel would have a DynaVox but there would be nothing Jewish on it,” says Frank. “Now she has prayers, stories, and a hagaddah that she can understand -- pieces of the puzzle that make up the whole of her Jewish experience. It’s as if Gateways, connecting us to other families and tapping us into the reservoir of Gateways talent, is the hub with our families and temples the spokes.”

Rachel and a teen volunteer at the Gateways Sunday ProgramJust a few months ago, the Murphys set the date for Rachel’s bat mitzvah: May 5, 2013. “Sometimes I have to laugh at what a multi-cultural undertaking Rachel’s Jewish education is,” muses her dad. “The gentile software engineer father at the kitchen table struggling with the Indian software on Chinese hardware, all working together to make this bat mitzvah happen.”

But none of it would be possible without Gateways, Frank insists. “There would be no alef-bet, no holiday symbols, no prayers, no path to a meaningful bat mitzvah. There would just be a gaping hole in our daughter’s identity.”

“For a child with disabilities there’s a lot of brokenness and, by making Judaism accessible, Gateways brings about a wholeness for her and for us.”

Category: Profiles

 

Profiles in Inclusion: Marie Strazzulla

February 8, 2011

Marie Strazzulla is a 25-year-old who loves her job. Mostly because no two days are ever the same.

Some days find Marie in the Gateways: Access to Jewish Education office, stamping, filing, collating or her favorite task: shredding (“It’s heavy work but it’s fun.”).

Marie pushing the snack cartOther days she’s at Gateways Sunday program, where she’s responsible for serving dozens of students their mid- morning snack.  “I like the kids,” she says. “I know a lot of the teen volunteers from Camp Ramah.”

Like so many other young adults in their first real job, Marie is proud of the new skills she’s learning every day.  And, because she has Down syndrome and lives in the Boston area, Marie was able to receive the kind of community support that both trained the Norwood resident and placed her in the job she now loves.

After high school, Marie enrolled in CHAI Works, a program of Jewish Family & Children’s Service designed to give adults with disabilities the kind of grounding in real-life work settings needed for jobs in either volunteer or paid positions. Then they make the match, finding just the right person for the job.

Last summer, when Gateways approached CHAI Works to help them find someone to work in their Newton office, Marie was ready and the “shidduch” was quickly made.  To help with the adjustment, her job coach came along the first couple of times.

These days, Marie takes care of the office tasks that used to pile up, those chores the staff was always too busy to get around to. And each Sunday the students know Marie will appear in their classroom with a cart laden with tantalizing snacks.   

Marie’s presence has also had a positive impact on Gateways’ staff, reports Executive Director Arlene Remz. “What we didn’t realize in the beginning was that, in order to help Marie be successful, we needed to structure the work and be clear in our expectations, breaking things down step-by-step and making sure we were communicating well. It turned out that this is a skill that makes things better in all the work we do.”

In addition, she adds, “Marie’s success is a very real reminder of Gateways’ goals, the hopes and dreams for independence that we have for our students too.”

Indeed, things have gone so well in the office that, early last fall, Marie was asked to add Sunday program responsibilities to her schedule.

But, as much as Marie’s loves her job, another topic that never fails to elicit unbounded enthusiasm is “I Love Lucy.” It turns out that, not only does Marie own DVDs containing every episode of the 195s hit series (the ones that make her laugh the loudest:Lucy’s grape-stomping, cupcake-manufacturing and candy-testing misadventures), but she’s also a storehouse of little-known Lucy trivia. A sampling:The exterior of the house used in the show was the star’s actual home, on Beverly Hills’ Lexington Street. Sonni and Marie

Surprisingly, Marie says her favorite part of her job isn’t serving snack to the children or even the shredding, but just spending time with the Gateways staff. “It’s seeing all you guys and feeling sort of comfortable,” she says with a shy smile. “Everyone here helps me a lot.”

To learn more about CHAI Works, contact Doreen Cummings at (781) 693-5638 or dcummings@jfcsboston.org or visit www.jfcsboston.org.

Category: Profiles

 

She Wouldn't Take 'No' for an Answer: Sue Schweber

November 2, 2010

As a freshman at University of Massachusetts, Amherst, Sue Schweber and a few other students convinced the university to give credits for Jewish history classes. But that was just a beginning. Sue later worked with student and faculty groups to establish the Judaic Studies department. Along the way, she helped organize the school’s kosher kitchen in the student union.

That’s who Sue Schweber is, someone who thrives on making things happen against all odds. 

"Maybe I'm stubborn or won't take ‘no’ for an answer, but somehow I always come into something when people are ready to give up," she says with a trademark grin. "Every time someone says it can't be done that spurs me on." 

And those lessons from her UMass Amherst years live on. "What I learned in college is that, to create change, you need to take small steps, be patient and bring the right people together who share the same passion to make it happen."

Though her hard-of-hearing mom dreamed of her daughter going into audiology, Sue chose to pursue the related fields of linguistics, speech and language, education and psychology, with Jewish Studies added when it was finally a department. After finishing up at UMass and completing a graduate degree in Speech and Language Pathology and later a certificate in Language Learning Disabilities, Sue spent a decade creating preschool and early screening programs and working with students of all ages with special needs in the Walpole Public Schools. Later as a key player in creating the mission, philosophy and curriculum of the South Area Solomon Schechter Day School, it was important to her that "the school begin with a strong philosophy of appreciating learning differences."

Sue with her cake at retirement celebrationIn 1991 Sue received the phone call that would give her the greatest challenge of her career. It was a Sharon dad named Joel Wine saying he and a few other parents were hoping she’d help them get something pretty ambitious off the ground. They’d heard from Jane Cohen at Schechter that Sue was a speech- language pathologist who loves students with special needs and the challenge of turning vision into reality. What they had in mind:weaving a supportive web to enable kids with special needs to attend Jewish day schools.

 "I love to solve problems," Sue says. "And I loved the idea of helping students get a day school education who wouldn’t have otherwise had that chance."

Meeting with the heads of the three South Area schools, Sue asked them what they were missing to serve every child who comes to them. "The expertise," they answered.

"I said, ‘If we provided you the expertise, do you want it?’ They all said ‘yes.’ I gulped. I had just promised that there would be a program up and running in September."

Though the start-up Jewish Special Education Collaborative (JSEC)’s first goal was to enable at-risk students to remain at their day schools, everyone involved soon realized their special education techniques "could help students who were struggling and maybe even help others attend who would never have had the chance before."

By the time JSEC joined with Etgar L’Noar to form Gateways in 2006, it had doubled to six schools. Now, 165 children in 11 area day schools receive the special education support they need to be able to thrive there.   

"What amazed me from the first was the trust the parents had in us," Sue recalls. "We had their collaboration every step of the way."

One of Sue’s first rules for administering the growing program was to spend time in the schools.  "I knew I had to be there to really understand their culture and their students, their teachers and their needs." Which is why for most of her years as an administrator Sue insisted on carrying her own speech and language caseload.

"It’s about working as a team," she adds. "When change belongs to everyone involved, everyone’s excited about it and it’s not just us forcing the change but everyone working together and really wanting it."    

Throughout the years, "When someone says this child can’t learn, it lights a fire under me. There'salways a way, we just haven’t found it yet. We can never say, ‘oh well, we tried.’"

Now, as she retires from her role as Gateways Day School Program Director, supervising two coordinators and 19 therapists, Sue says she has every confidence the programs she helped build will continue to grow and make all the difference in children’s lives. And she promises to stay on part-time as a consultant.

"Our first students are in high school now, and many still use our strategies but don’t need us with them anymore," she says. "Watching our students be successful is one of the most incredible thrills you could imagine."

Category: Profiles