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Rachel's Bat Mitzvah Journey

By Gateways and Frank Murphy
June 4, 2012

On May 5th, the Gateways community came together to celebrate the Bat Mitzvah of a very special student: Rachel Murphy. Rachel is a cheerful girl whose enormous love of music causes her to light up at the first note of a familiar tune.  Rachel has brain damage from a stroke after heart surgery when she was a 2-year-old. She can’t speak, she can’t walk and she has uncontrolled seizures.  Yet, since first enrolling Rachel in 2005, her parents have driven 2 hours round trip to bring her to Gateways’ Sunday Program each week so that she could receive a Jewish education. And in spite of her limitations, and with the support of a Gateways special educator, Rachel has learned. On the day of Rachel’s Bat Mitzvah, her dad, Frank, addressed the large gathering of family and friends at their home synagogue, Temple Beth Torah in Holliston, and these were his words:

Rachel with dad Frank and mom Elisa

Elisa and I wanted to take a moment to say a very big and very heartfelt thank you to all of you for joining us on this very special day. In the next few minutes we’ll try to express in words how moving and how powerful it is just to be here on this very unique day.

As many of you know, especially if you were with us during those early days in the cardiac ICU in Children’s 13 years ago, we never really knew for sure if we would be standing here today.  In the time that’s passed, she’s grown up quickly.  The pictures on the walls of her room have changed from butterflies to…Justin Bieber. Oy vey!! In those 13 years as we’ve faced struggles and obstacles head on, Elisa and I have often been asked: How do you do it?

The answer is simple: it can be found in this room. Look to your left, look to your right. This community of family, friends, care givers, volunteers, school and religious educators have all played some role in helping us not just to survive some medical crisis, but to overcome life’s obstacles, and to grow and thrive in a way that ultimately brings us here today. You’ve all done some sort of good deed in our lives and we thank you for that. There’s a word for that- doing good deeds- it’s called mitzvah and it’s a perfect theme for today.

Rachel reaching for TorahThat’s because today isn’t about putting Rachel on display just to have her push buttons on a screen. Today is about resilience, about accepting life’s limitations and making the best of them anyway, about broadening the view and the value of a Bat Mitzvah.

Think about these words: help, learn, grow. Those are great ways to describe today and the importance of helping and of doing good—doing mitzvot.

But please remember that helping and teaching isn’t just a one-directional activity with Rachel. While each of us has been part of her education, she has, in turn, taught many life lessons. Life skills, they call them at school. Here are three examples:

1.  Be present in the moment. Stop and think, how difficult was it to shut off your phone today? Doing that helps us be present, to be in this special moment before God. Have you ever known Rachel to worry about tomorrow, or next week, or be sad about some event in the past? No. She completely lives in the moment. No filter, no hidden agenda.

When you say hello, she gives you a hug, a real one. They’re great. That ability to always be present and to live in the moment is very powerful. It’s a great lesson.

2.  Next, be flexible and adapt. There have been many adaptations behind the scenes to put this event together today. Her Hebrew School team from Gateways in Newton. Arlene, Nancy, Rebecca, Yarden, this team has worked with us for years to adapt Jewish education and make it accessible to children with all types of disabilities. As the non-Jewish parent in the house, I’ve been able to join Rachel on her educational journey so that I also understand the holidays, the torah and the culture. They’ve helped us adapt as a family so we can pray and celebrate together.

Another adaptation they’ve helped with today is on her Dyanvox device. They’ve helped build programs on it that make the Torah accessible for Rachel. When she sees an image from her prayer book on screen, of a kid covering their eyes, she knows that’s the symbol for the Shema, one of the holiest of prayers. So today is not just pushing buttons, she’s independently calling us to prayer, and leading the congregation.

Click here to learn more about how Gateways helped make Rachel's Bat Mitzvah inclusive and accessible.

3.  The last lesson is to be inclusive: The ultimate symbol of inclusion today is the tallis itself. It has hundreds of fringes, or tzitzit, around the edge. Each one serves as a reminder of God’s many commandments. In our society, when faced with tragedy and disability, kids like my kid can become much like the tzitzit on a tallis, fringes around the edges of our society. By being here today, singing with us, praying with us, each of you has played some inclusive role in our life. So that, in the same way as the tallis itself has fringes and fabric woven together, by celebrating with us today, though we come from different backgrounds and have different abilities, we’re all woven together in celebration.

So on Rachel’s behalf, thank you for coming here today, for doing good deeds and mitzvot, for being part of this inclusive moment, and for helping us most to grow. Hopefully along the way we’ve helped you in return.


Materials that supported Rachel's learning and helped make her Bat Matzvah inclusive and accessible:

Prayers in Picture Symbols »

Prayers with visual supports were created to help make prayers simple, accessible, and understandable for students with a variety of disabilities. In these files, each Hebrew phrase is illustrated by a simple picture symbol (we use Mayer-Johnson Boardmaker symbols). Students with disabilities can follow along with each prayer and learn to understand its meaning using symbol prayers.
  
These files were imported onto Rachel's Dynavox device, and synced with audio files of someone singing the corresponding blessing or prayer. Over the years, Rachel learned to recognize the images that represent the various blessings and prayers, and was able to lead others in prayer by pressing the images, activating the voice output. »»»

https://jgateways.org/cms_content/upload/resources/bnei mitzvah/Rachel's Program.pdf

Bat Mitzvah Service Vocabulary Reference Sheet »

This Bat Mitzvah vocabulary sheet features short and clear explanations of some Bat Mitzvah basics: mitzvah, kippah/yamulka, tallit, bimah, ark, and many more. Rachel comes from an interfaith family, and this sheet was distributed with the program book on the day of her Bat Mitzvah to help everyone in the audience feel comfortable and participate. »»»

Rachel's bat mitzvah service program

Bat Mitzvah Service Program Guide »

Producing a clear and simple service guide like this one, and including it in the program at a child's bar or bat mitzvah, can make the service inclusive of everyone in attendance. Whether intended for the other children in the congregation or for non-Jewish members of an interfaith family, this guide can help everyone follow along and participate in the service. This guide includes a visual representation of the order of the service, and explanation of each part of the service, and an explanation of the Torah's clothes and ornaments. »»»

Category: Profiles

Tagged under: bat mitzvah, b'nei mitzvah, girls, rachel murphy, non-verbal, visual supports, dynavox, synagogue skills, dvar

 

Helena's Triumph: A Special Needs Bat Mitzvah Story

By Deborah Fineblum Raub, for Gateways
June 1, 2012

Helena Schreibman is comfortable at Congregation Mishkan Tefila. After all, each week she takes her Gateways: Access to Jewish Education B’nei Mitzvah classes here, coming in all the way from her home in Winthrop.  Each week she’s worked with her tutor learning to read Hebrew and prayers and each week she’s practiced with her fellow students the fine points of a service such as the blessings and Torah procession.

Helena with Rabbi and her Bat MitzvahBut the 9th grader never thought she’d be having her bat mitzvah here. Her mother’s unexpected passing in April 2009 and a series of conflicts had pushed Helena’s bat mitzvah off again and again at the family’s home congregation, Temple Tifereth Israel in Winthrop. But this time when her dad, Nat, made a date, May 9, 2012, it stuck.

And the event was the product of incredible teamwork. “It really does take a village to raise a child, and this day is proof,” remarked Arlene Remz from the bimah. Remz heads up Gateways, which provides students with special needs like Helena a Jewish education tailored specifically for them.  “The Gateways community has been with you in tough times and has now come to celebrate your bat mitzvah with you,” Remz said.

And celebrate they did. The chapel was filled with Gateways students and their parents, beaming at Helena.  As she led into the opening words of Ma Tovu, Helena looked up with a huge grin when everyone chimed in, the Gateways kids singing the loudest of all.

“Helena, today is a day you and your family and friends have looked forward to for many years,” said Mishkan Tefila Rabbi Leonard Gordon. “I know how much this moment means to you and all you did to make it happen. Helena, your mother, Michelle, would have wanted us to invoke her blessing on this occasion. This ritual marks the fulfillment of one of her hopes ... As the rabbi at Congregation Mishkan Tefila and a friend of Gateways, I am especially delighted to join with your tonight and share our joy in hosting this service. May this be the first of many such moments we share.”

Nancy Mager, who directs Gateways’ Jewish Education Programs and has worked with Helena over the past several years, was the next to speak. “You have such a positive attitude, you make friends wherever you go,” she said, adding that Helena is determined to continue her Jewish Education next year in both the Sunday program and Gateways’ Mitzvah Mensches youth group, where she’s already an active participant.

But on this day, like generations of b’nei mitzvot before her, Helena ducked the candies being thrown her way and the Gateways kids, like generations before them, wasted little time collecting them.

As the congregation moved to the social hall for the celebration, the “village” Remz had referred to was in full flower.  The buffet dinner had been organized by the Mishkan Telfila Sisterhood, the cake was a gift from Helena’s tutor, Michelle Gary, and Schreibman cousin and photographer David Fox manned the camera, while the colorful centerpieces had been crafted at the Mishkan Tefila’s Religious School’s recent Mitzvah Day.

“Everyone did something to make it special for the family and it all came together,” said Laurie Gershkowitz who, along with Sharon Diamond and Diane Jaye, organized the dinner and party. Helena and classmate at her Bat Mitzvah

But none of the behind-the-scenes grown-up planning seemed to matter at the moment. As her Gateways friends lifted Helena high on her chair, she threw back her head and laughed, without an ounce of fear.  

“When I saw her reading and singing up there, I was incredibly proud of her,” said Helena’s teacher at Winthrop High School, Chris Donnelly, who’d made the trek out to witness his student experience her special day. “I was really, really impressed.”

In fact, besides Helena’s father and grandmother, no one beamed brighter than her teachers and her tutor.

“When other kids get up and say the blessings at their bar or bat mitzvah, it’s pretty easy for them,” said tutor Michelle Gary. “But Helena must have practiced the brachas before and after the Torah reading thousands of times over the last couple years. Never once did she get frustrated or give up. And you know what? She did them perfectly. It’s just that most people who heard her could not have known how much went into it. If they did, they would have seen it for what it really was. It really was a triumph.”

Category: Profiles

Tagged under: bat mitzvah, b'nei mitzvah, congregation mishkan tefila

 

A Leap of Faith

By Susan Flynn, Associate Editor, Boston Parents Paper
March 5, 2012

Ethan Gottlieb celebrates his recent bar mitzvah with his parents, Robert Gottlieb and Marla Richmond, all of Westford.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.”


 

Category: News

Tagged under: boston parents paper, murphy, gottlieb, levitt, rebecca redner, press

 

Team Binny

By H. Glenn Rosenkrantz, for Gateways
August 30, 2011

At Striar Hebrew Academy of Sharon (SHAS), the head of school is starting these early days of the new term as he always does, standing out front and greeting students as they arrive by foot, car or bike.

And every day, without fail, one car pulls up, and one bespectacled third-grader emerges with a resounding and heartfelt Boker Tov delivered with ear-to-ear smiles.

"Every morning, he teaches me how to relate to others, with a sweetness and openness and ever-present good humor," said Dr. Richard Wagner, head of school. "He sets the tone. It's contagious."

Binny holding his SiddurIt's a mighty load for an eight-year-old boy, but Binny Ellenbogen unwittingly delivers big time.

And here, no one thinks twice about the fact that Binny is a child with Down syndrome.  For sure, he is in the minority as a child with special needs, but he is in the majority as a child attending SHAS for a solid and immersive Jewish day school education and experience.

Of the 110 students at SHAS, Binny is one of about a dozen receiving support services from Gateways to address special learning needs. These are provided through individualized instruction and therapies both in and out of the classroom, but all within a supported inclusion program.

A learning specialist modifies and customizes his curricula but preserves and maintains its goals and objectives. An instructional aide helps him to understand classroom lessons on his own terms, and he receives occupational, speech and language therapies during the course of the week, all while being fully included with classmates and in tune with the rhythms of the school day.

"He is a full participant in the school community along with his peers," said Sue Schweber, Founder of the Day School Program at Gateways: Access to Jewish Education, which partners with SHAS and 12 other Jewish day schools in the greater Boston area to ensure a Jewish education for students with special learning needs.

"Every child learns and takes in information differently and Binny is no different in that respect. As with all students in Gateways, Binny's services and program are based on his individual learning style and needs."

On a recent weekday morning, Schweber sat with the team of teachers, aides and therapists who interact with Binny throughout the school week.  The regular meeting is an opportunity to plan, integrate approaches, share observations and compare notes.

Team Binny: Binny with his parents, head of school, and all of the therapists and teachers who support him at SHAS"None of us are working in a vacuum," said Dina Saks, Binny's classroom teacher. "We all build on each other and learn from each other.  Our objective is to make sure we are unified and that it all works for Binny."

And it does.  Professionals who are part of Binny's team underscored his progress.  He has a wide circle of friends inside and outside of school, and enters the rough and tumble as gladly as the rest of them.

"I've seen a dramatic difference in him over time," said Marcie Lipsey, an occupational therapist who works with him for 90 minutes per week to develop hand dexterity and strength and visual and perception skills, among others.  All of these are skills he takes back to the classroom, as well as to social settings and home.

"This is clearly the right environment for him and the right integrated support network for him. I don't believe that this would happen if he was outside of the Gateways model."

His Jewish character and knowledge are developing and deepening as well, said educators and his parents, as Jewish exposures from school, home, synagogue and elsewhere converge.

"Our shul community and our home are reflections of each other," said Debbie Ellenbogen, Binny's mother and herself a Jewish day school educator. "Being in a school environment that is Jewish-focused is completely reinforcing for him.  That's the kind of environment I want all my kids to be in, and he shouldn't be an exception because he has a disability.

"It is important to me that he makes progress at his own pace in areas that are important for him.  There will always be a gap.  But the school he is in appreciates and nurtures his individuality, talents and interests."

Binny running with Israeli flagsHe loves stories attached to Jewish holidays, takes family trips to Israel, can use basic Hebrew words, reflects on the memory of relatives by a Yahrtzeit candle, and leaps to open the Torah ark at services.

"Gateways allows Binny to be educated in a Jewish school and with a Jewish education, and this has defined who he is," Lipsey said.

The Gateways model is all about access to Jewish education, and ensuring that parents have options for day school, pre-school and supplementary environments for a child with special needs. Educators and parents alike say there is a moral imperative that this be the case.

"It's all well and good to say to our kids that we have to treat each other nicely and with dignity and respect," said Dr. Wagner, the head of school.  "But that is just talk and blather until we put these values and virtues into action.

"SHAS and Gateways are partners in making this happen.  We want the same things.  Gateways brings to the table specializations that are simply essential to students with special needs who are entitled to a Jewish education.

"If it wasn't for them, then the success and inspiration and joy that is Binny just wouldn't be happening."

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Category: Profiles

 

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