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:
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.
That’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.
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.
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. »»»
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. »»»
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. »»»
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.
But 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.
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.”
August 30, 2011
A supporting voice to the story of Team Binny.
When you look at Binny, what do you see?
I see an amazingly popular, engaging and smart boy. I see a child who is surrounded by friends and educators and family members who believe in him and support him. And I see a person who brings his own value and perspective and contribution to any environment that he is in.
As a professional who has overseen Binny’s education here from the beginning, can you give a sense of how the Gateways approach is benefitting him at SHAS?
He benefits from professionals dedicated to his development and inclusion within the Jewish day school environment. This is a supported inclusion program, in which he receives specialized instruction in basic skills, such as reading, writing, math and Hebrew, so that he can learn with his class. A learning specialist adapts and modifies curricula to meet his needs, but preserves the overall objective and goal of the lessons and their progression.
The team approach is very important here, right?
It is critical. I regularly convene professionals who work with Binny to ensure that his program is integrated and so we can share observations and chart his progress. This includes his teacher, his learning specialist, his instructional aide, an occupational therapist and a speech-language pathologist. This network within SHAS, combined with his friends and family, creates an environment of support and success.
Give a sense of his progress.
When we started working with Binny, his mode of communication was signing. But he was able to break through that and begin using his voice to express himself. This has progressed rapidly.
In the first grade, he learned how to be a student and he is an exceptionally hard worker in school.
Binny always surprises us with his ability to move forward. There are so many things that he wants to do and can do. And we feel we need to support his growth, not limit it. We want him to be a full part of the community.
What do you think Binny’s presence brings to the school?
Binny has an impact on many levels. Children understand that learning can be difficult, and asking questions and working hard are all part of the process.
Teachers are more thoughtful about the learning process, presentation of materials, strategies and problem-solving skills for all students.
Binny offers everyone he comes in contact with an appreciation of the differences among all of us, and how we all learn and interact differently. He gives us an understanding of the real world.
August 30, 2011
A supporting voice to the story of Team Binny.
Why is a Jewish day school education so important?
A Jewish education is one of the most important and effective ways of guaranteeing Jewish continuity.
There are approximately 210,000 children in Jewish day schools in the United States. This represents a bit less than one-quarter of Jewish school-age children. As much as day schools have grown in the last few decades, a minority of Jewish children is receiving a day school education.
We have to get as many of them into Jewish day schools and Jewish educational settings as possible. We are talking about nothing less than community continuity.
There are about 20 students at SHAS who have special needs. How does this fit into your philosophy about community continuity?
If we value the continuity of the Jewish community into the next generation, and if we assume that Jewish day schools are an effective tool for this, and they are, then we must get as many students into Jewish day schools as possible. And this must include those who are differently abled.
But as a community, we haven't put resources into this, and as a result, too many students are left at the gate. If we don't welcome them, then either we as a people are not interested in continuity, or we are just being exclusive, and telling some that they are not entitled to a Jewish education and they are not part of our future and our continuity. It's that simple.
Speaking of gates, reflect for a moment on the value of Gateways: Access to Jewish Education in this realm and to SHAS.
SHAS and Gateways are partners. We want the same things, so there is a synergy and a symbiosis. They are the voice of special needs students in our community, and they bring to the table specializations that are simply essential to ensure that students with special needs are part of our school and our community and the Jewish people.
Do Jewish values play a role in any of this?
Jewish values are fundamental to inclusion. As a people, we promote values such as chesed and tzedakah, but we are being incomplete if we don't apply these to the very broadest of the population. If we aspire to model these values and virtues, then we have to do what we are doing here. If we exclude, we are basically telling someone that they are not important. This is a matter of taking a Jewish value seriously.
Is SHAS a model?
Here in Sharon, having a school that students with special needs can access is an act of community building for students, parents and others, and is a model for the Jewish community that we should aspire to be.
By H. Glenn Rosenkrantz, for Gateways
August 30, 2011
Over 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."
It'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.
"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."
He 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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