What do we do with the verses in Torah that seem to explicitly exclude people with physical disabilities? Need they be read literally, as an illustration of how we might intentionally marginalize such members of our communities? Read more
On Yom Kippur, three Congregation Or Ami members shared sermonettes throughout the service on Lessons They Learned Living Through Hardship. These Jewish TED Talk/Yom Kippur Social Sermons were each moving individually and very inspiring as a whole. Read about How a Whole Congregation Wrote its Rabbi’s Yom Kippur Sermon.
Lessons Learned from Living Through Challenge
by Eric and Jill Epstein
It is often said that God will not give you more than you can handle. When our third child Ethan was born, he must have wondered if God was right and whether he was up for the challenge of truly enlightening us.
Challenge is a relative and dynamic term. One person’s challenge is another’s day-to-day existence. Our son Ethan is within the Autism Spectrum. Just uttering those words – Autism Spectrum – used to be a challenge for us. Now, we laugh at the label, as Ethan is so social and happy defying customary views of such a diagnosis. The truth is that the only spectrum we deal with these days is the spectrum of goals we have been blessed to look forward to accomplishing.
|Jill, Ethan and Eric Epstein
When Ethan Became a Bar Mitzvah
We used to wonder if Ethan would ever speak, and now we have to hold him back from pushing Rabbi Paul aside at the bimah. Congregation Or Ami has become such an important place for Ethan for many reasons. When our first son, Andrew, became Bar Mitzvah, we were so worried that Ethan might distract from the services that he was sequestered to the sound-proof kids’ room. Ethan would have none of that, as he grabbed a prayer book and took part in the services on the bimah with a quiet calm we had not seen previously.
Seven years later, Ethan was leading services at his own Bar Mitzvah service with that quiet calm we had become accustomed to. Although Rabbi Paul, Cantor Doug and Diane Townsend were prepared to modify the service as needed, Ethan would have none of that and participated as fully as another other Or Ami student. Gazing out to a crowd of friends and family, Ethan unrehearsed exclaimed, “This is my moment!”
Of course, tackling Ethan’s special needs is a team sport. That “moment” didn’t happen without a team of teachers, educational therapists, speech therapists, and behavioral therapists to challenge his short-comings head-on and who stood proudly with Ethan for a very special Aliyah. These challenges merely amplify his accomplishments.
Former Or Ami President Michael Kaplan swears that Ethan will be President of Congregation Or Ami someday. Such a statement seems as challenging as his Bar Mitzvah service was seven years ago. Why not set this as his next goal? We have learned that you hit what you aim for, and if you aim at nothing, you will hit it every time. Isn’t that a lesson of the Unetaneh Tokef prayer? That life will necessarily throw challenges our way. Our job is to reach out and find ways of finding goodness and blessing nonetheless.
For Ethan, he seems to have a special companion on this unlikely and challenging course of life that draws him to services on many a Friday evening. When Rabbi Paul once asked him in front of the Congregation what draws him to Temple. In a sentence that was simultaneously simple and yet complicated, Ethan answered, “I feel close to God.”
And we have no doubt that God is particularly close to him too.
G’mar Chatimah Tova. May you be sealed for a blessing in the Book of Life.
Listen to Eric and Jill Epstein’s Sermonette (at 00:33:40).
On the TV show Parenthood, teenager Max has Asperger’s Syndrome. While running for student body president, Max tells his classmates about his Asperger’s. The episode is riveting television, but not quite as poignant as when one of our Congregation Or Ami teens stepped up before her peers and shared her own Asperger’s story.
It all began when one of our teens and her mother watched the Parenthood episode. It inspired her to contact their rabbis to suggest that our teen tell her fellow teens about how her Asperger’s affects her. Since at Congregation Or Ami we start at “yes” – especially with regards to full accessibility for individuals and families with special needs – we moved quickly to scheduling a date for her presentation to her peers.
Our teen worked with her parents to compose a paragraph about her strengths and challenges she wanted to share with the group. To make it most comfortable for our teen, one of our rabbis was present to support her when she was speaking.
Jewish Teenager with Asperger’s Shares Her Story with Her Temple Peers
Our teen said:
I have Asperger’s Syndrome. It is a part of me. I might think differently than you do. My brain is kind of like a MAC and everyone else is PC. I just do things a little differently. My brain functions a different way than yours does. It’s not wrong or bad to have Asperger’s Syndrome. It’s just another way of thinking and being. 1 out of 88 people is on the autism spectrum. This is a recent number. Chances are you, or your mom, dad, sibling, grandparents, whichever, may know someone who works with, is friends with, or goes to school with someone on the autism spectrum. Scientists are still not sure what causes Asperger’s Syndrome. They have been working since the 1930’s to discover what it is and what causes it.
There are people who have been suspected to have some form of autism or Asperger’s Syndrome.
- Temple Grandin is an American doctor of animal science.
- Bill Gates is the creator of Microsoft and is one of the richest men in the world.
- Albert Einstein was a German/American theoretical physicist.
- Abraham Lincoln was the 16th President of the United States.
- Loves Animals, and
- Loves Reading
- I can take things out of context.
- I may say things that might seem rude, but I don’t mean it.
- It’s hard for me to make eye contact and make friends.
- If it seems like I walk away sometimes, I just need a little break.
What can you do?
- Understand that I struggle with social interaction and try to understand what I am going through.
- Accept everyone as unique and valuable.
- Talk to kids who seem shy. Include them.
- Stand up for kids that are being bullied.
- Don’t be reluctant to give friendship advice, but be kind about it.
Our teen answered some questions and the session continued with the scheduled session plan. But like the fictional Max from tv’s Parenthood, our real-life teen inspired her peers and taught us all about strength, grace and courage.
On Judaism and Accessibility
Congregation Or Ami in Calabasas, CA has long been committed to accessibility for individuals with special needs and their families. We have a webpage emphasizing our accessibility to Jews with Disabilities. Our Brandon Kaplan Special Needs Fund helps us integrate people with special needs and their families into all aspects of our congregation. We are also the synagogue for Chaverim, a program of Jewish Family Service, for developmentally disabled adults, age 18 to 88. I blog regularly about the intersection of Judaism and Jews with Disabilities.
Our national Reform Jewish movement – especially the Union for Reform Judaism – has a long history of working for full inclusion and openness for people with disabilities and special needs.
URJ Camp Newman in Santa Rosa, CA has a dedicated Nefesh team comprised of psychologists, therapists and social workers who are at camp all summer. The Nefesh team helps the counselors and roshim (unit heads) integrate and support all children with unique situations (including emotional, physical, psycho-social and other “special needs”). Read about Ethan’s experience at Camp Newman.
Meet Ethan through the eyes of his Mom:
Since his diagnosis of autism at age 2, we have worked hard to “mainstream” our son Ethan into everyday activities, schools, sports teams and social situations. At times it has been a struggle for him and for us wanting him to be a normal kid. With a lot of hard work on his part, as well as with the help of a team of behaviorists, speech therapists and a lot of supportive friends and family members, Ethan has blossomed into friendly, outgoing, and independent almost 13-year old.
With his Bar Mitzvah service less than 6 months away, it seemed almost natural for him experience sleepover camp. Thankfully, and with the blessing of our Rabbi Paul Kipnes and Rabbi Erin Mason (Associate Camp Director at Camp Newman), this experience became a reality for him (and us) this past summer, as he spent two weeks at URJ Camp Newman in Santa Rosa, CA.
Kvell with Ethan’s Mom about Ethan’s fantastic experience at URJ Camp Newman:
Dear Camp Newman,
My son, Ethan Epstein, was a camper in the first session of the summer at Camp Newman in the Tzofim eidah (unit). You probably remember that we spoke in the spring about his enrollment this summer, as Ethan has special needs that may have been a concern. My husband and I felt that he was more than ready to attend overnight camp and were thrilled with the opportunity for him to attend with his friends from our congregation as well as with Congregation Or Ami’s Rabbi Paul Kipnes and his family.
Needless to say, the experience was more than we ever imagined. From the minute we arrived at the airport (he flew with the camp delegation from Burbank) to the minute he stepped off the plane on his return, the entire experience was a HUGE success! Ethan loved every minute that he was there, and has already informed us that he is planning to attend for a MONTH next year!!!
I couldn’t let the opportunity pass without letting you know how much I thank you and your wonderful staff at Camp Newman. While it is always our hope to integrate Ethan into mainstream situations, we are aware that sometimes certain accommodations need to be made, and we thank you for that. Our goal was for him to make new friends, gain independence, and mature in a loving and spiritual environment, and he achieved (and surpassed) all of these.
Thank you, thank you, thank you for a wonderful and successful overnight camp experience. We look forward to next summer at Camp Newman!
Shalom, Ethan’s Parents
Reform Judaism – especially the Union for Reform Judaism – has a long history of working for full inclusion and openness for people with disabilities and special needs.
Congregation Or Ami in Calabasas, CA has long been committed to accessibility for individuals with special needs and their families. Our Brandon Kaplan Special Needs Fund helps us integrate people with special needs and their families into all aspects of our congregation. We are also the synagogue for Chaverim, a program of Jewish Family Service, for developmentally disabled adults, age 18 to 88.
URJ Camp Newman has a dedicated Nefesh team comprised of psychologists, therapists and social workers who are at camp all summer. The Nefesh team helps the counselors and roshim (unit heads) integrate and support all children with unique situations (including emotional, physical, psycho-social and other “special needs”).
We schepp nachas (are filled with pride) as we celebrate Congregation Or Ami’s congregant Diane Simon Smith, for her long-term ongoing commitment to families with children with disabilities. Diane has been an integral part of Or Ami’s foundational commitment to inclusivicity, an outlook that has led us to mainstream disabled children in our religious learning programs, in our LoMPTY youth group and to partner with Chaverim, a program for developmentally disabled adults.
The IDEA Infant and Toddler Association (ITCA) Parent Leadership Awards are given annually to acknowledge outstanding state parent leadership on behalf of the Part C program for infants and toddlers with developmental delays or disabilities and their families. Parents may be nominated on the basis of significant contributions, in either a volunteer or paid capacity, during a specific period of time, or for exceptional efforts over a period of several years. These efforts may range from family support efforts, recruiting and/or training families, serving on committees, working on legislative initiatives etc.
When her son Andrew was born in 1985, 14 weeks premature, severely disable with cerebral palsy and overcoming tremendous odds to live, Diane Simon Smith promised she would do for him in the world what he could not do for himself. Her son Matthew was born three years later with Fragile X syndrome. Diane immersed herself in the special needs world to advocate not only for her own sons but for others as well. In 1991 she returned to school shifting her focus to marriage and family therapy with a focus on supporting children with disabilities and their families in group settings and individual counseling. Diane developed a specialized private practice working with families of children with disabilities. For the past fourteen years she has run support groups for parents and sibling workshops and has developed two retreats: Healing the Mother’s Heart and The Journey. Diane is an author and presenter about marital relationships, grief and loss, sibling issues and strategies for thriving as they relate to childhood disability.
A quote from one of the support letters that were received speaks to the outstanding qualities that this award represents:
“I met Diane several years ago at a retreat she held in Santa Barbara. The retreat was designed to gather women together of all ages, ethnicity and socioeconomic status. The one common thread we shared was that we all had children with special needs. By sharing with this unique group of women for 36 hours, Diane gave us permission to share our most
intimate fears and hopes. Her guidance was outstanding, professional and given from a place of true love and empathy. We were allowed to laugh, cry, vent and share our experiences in a completely safe and healthy environment.”
Mazel tov, Diane, your simcha (joyous moment) is our nachas (pride).
About 2 years ago, Congregation Or Ami opened its arms to Chaverim, a program for developmentally disabled adults age 18 to 88. In the months since we easily agreed to become Chaverim’s Valley synagogue, we have enjoyed a harmonious relationship.
Thank you for making Chaverim feel so welcome at Or Ami. I was so impressed and awed by how inclusive and welcoming your community is that I can hardly stop talking about it.
So I realized that I should share my thoughts with you too!
- Having the space for our Chaverim Shabbat dinners. Dayeinu! (That would have been enough)
- Being made to feel welcome by our liaisons. Dayeinu!
- Being made to feel welcome by the ushers who greeted us with the same excitement that she greeted everyone else at Temple. Dayeinu!
- Seing one of our Chaverim members constantly changing seats in the sanctuary, asking all kinds of questions, and none of the other Or Ami members batting an eye about it. Dayeinu!
- Being welcomed into the community along with the other new temple members during services. Dayeinu!
Any one of those things on their own would have been wonderful, but that your community did so much more is truly inspiring and awesome!
I love working with Chaverim but much of what we do is on our own. Thank you and thanks to Or Ami, I now know what inclusion looks like.
Looking forward to many wonderful years together. Thank you for all you do!
For Congregation Or Ami, inclusiveness has always been a primary value of our community. Our website speaks directly to how openly we welcome people with disabilities, multiracial and multiethnic individuals and families, interfaith couples and families, LGBT individuals and families and others. It is not such a special thing, because isn’t that what a community is supposed to be like?
I received a message recently about a parent of a child with special needs. It seems that this parent was unsure that the special needs child could ever become a Bar Mitzvah. Here’s my response to the parent:
Recently, Cantor Doug Cotler and I officiated at two different B’nai Mitzvah services of children with special needs. In each case, the parents were sure that their child would never read from Torah, lead the service or become a Bar Mitzvah. Like the few dozen other such families who thought the same, they were overwhelmed and blown away when their child led the service, read from Torah and gave a speech. There wasn’t a dry eye in the house!
At Congregation Or Ami, we are committed to the idea that any child of a member who works to the best of his or her ability, has the privilege and right to a Jewish learning experience and to becoming a Bar/Bat Mitzvah. The children participate in a real service, just one that is subtly tailored to each child’s unique abilities (which, by the way, is basically what we do for EVERY child).
What does that mean?
- Maybe he will read Torah but not Haftarah.
- Maybe he will sing the prayers he knows and explain others.
- Maybe his service will be before only 15-20 of the closest and then there will be a bigger party.
- Maybe he will only chant one verse of Torah per aliyah.
- Maybe his Torah portion will be the V’ahavta prayer, which he will already know by heart (the V’ahavta in the prayerbook, comes from the Torah).
- Maybe… maybe… maybe…
The keys to it all are three interlocking elements:
- The commitment of the Temple to say “YES, this CAN and WILL happen.”
- The creativity of our B’nai Mitzvah tutor Diane Townsend to figure out ways to get each child to do his/her best. Diane works with me to tailor the service in a way that outsiders would not realize is tailored, but makes your child shine brightly.
- The willingness of the parents to let go of their sense that it cannot happen, but instead to believe that yes, my son – just like every other Jewish boy – can become a Bar Mitzvah.
By the way, I have NEVER encountered a child with special needs (at Congregation Or Ami or at my previous synagogues) who could not and did not become a Bar/Bat Mitzvah.
I so look forward to celebrating as your son becomes a Bar Mitzvah. So don’t worry.
Just say to yourself, “Yes, this will happen.” Then breathe…
We can talk more if you want.
Gosh, I wish we could better publicize this message. I wish that all synagogues would realize that there should be NO barriers to children with special needs, especially with regard to Jewish ritual.
Alas, we can only work in our little corner of the world…
On July 10, 2011, Congregant Or Ami member Matthew Simon, who has Fragile X Syndrome, joined 28 other young adults with special needs and staff on a 10 day Birthright trip to Israel. They toured the country, learned about Judaism, rode donkeys and camels, slept in a Bedouin tent, and prayed at the Wall in Jerusalem. The trip was organized by Mayanot. It was dream come true for these young adults and their families as they did what so many other Jewish young adults do, with full access to this Jewish experience.
Watch the YouTube video below as Matthew and other young adults with special needs reflect upon their Birthright trip.
Congregation Or Ami has long committed to equal accessibility for all Jews and Jewish families, regardless of any special needs they might have. Recently, we developed a relationship with Chaverim, a program of Jewish Family Service of Los Angeles, for developmentally disabled adults age 18 to 88. Let the doors of the synagoge be open to everyone who approaches.
I have a new hero. Someone who I look up to, venerate, and applaud. Someone who inspired and inspires me. I met this hero in New Orleans, while away at a CCAR rabbinical convention.
Sitting in a club listening to some great jazz, I heard my hero’s story. There were tears while it was told. My heart both sanked and soared while I listened. I vowed to always remember the story and shine light on the heroicism.
It’s a story about Aspergers, a condition on the autism scale, which – among other things – leaves those with it, without the crucial ability to read social cues. Unable to tell if you are bored, irritated, or busy, the person with Aspergers just drones on, seemingly acts out, or worse. He sometimes say things that are out of context, not funny, or are offensive. It’s hard for her to maintain friendships because people just don’t get her or can’t handle the challenge.
Worse yet, like a person in early stages of Alzheimer’s or Huntington’s Disease, many people with Aspergers know they are different. They know their life will never be normal. In my hero’s life, the dream was to have one day (just one day!) to be normal, without the Aspergers. A far cry from the new car, new jewelry or an iPad 2 that most of us covet.
It wasn’t working for both mom and dad to work. Aspergers Boy (call him “Abbie”) was not thriving; friendships were not abiding. Mom and Dad were dividing, a load of pressures and responsibilities that threatened to bring them all down. ‘Twas difficult to focus other siblings when Abbie needed such help, guidance and advocacy. Everyone suffered.
Oh, did I mention that mom was a highly successful professional, targeted by many to become the next CEO in her company, while Dad was a well paid craftsman, sought after for the quality of his work. They happily lived near family, surrounded by dear friends.
But life was getting oppressive. They couldn’t keep going. No one was thriving. Something had to change.
So they took a radical step. They searched the country – yes, all over America – for a town that provided real resources for children with Aspergers, in an organic way. They found a place where Abbie could thrive, where mom and dad’s stress would subside, where the needs of the other kids would not collide with the sacred responsibility of raising an Aspergers Boy.
So dad transferred to a new job a half a country away. They bought a house out there. They registered the kids in new schools.
Abbie won’t quite get his wish to be without Aspergers for a day, but he is going to a community where being an Aspergers boy might just be … normal.
Who is my hero, you wonder? Why it’s mom!
Mom is giving up her high profile, highly successful job and career, moving away from her family, leaving her friends, and plopping herself down in the middle of nowhere (well, relatively nowhere) because the family realized that Abbie and family needed full-time attention and guidance.
What’s a hero? Someone who, without thinking about her own needs, acts in a way to nobly put the wellbeing of others first. Think MLKing’s march through Selma. Think rescue workers in the remaining World Trade Center tower on 9/11.
And think of Abbie’s mom, who selflessly is giving it all up for Abbie, for her family and for the sacred gift of nurturing a child with Aspergers.
Abbie’s mom goes nameless, unless she wants to out herself in cyberspace. May she, and the others who have made similar choices, know that they inspire so many of us to strive to be heroes too.
Torah teaches, “Do not place a stumbling block before the blind.” The RiPiK, a twentieth century commentator, suggested that beyond refraining from placing blocks, we should actively remove stumbling blocks. To what might this be compared?
Even as the Director of Chaverim, a local program for developmentally disabled adults asked the question, his discomfort was evident: “How do you feel about opening your congregation to a local group for developmentally disabled adults?”
“Why wouldn’t we?” I asked.
“We’ve been to other synagogues that have opened their doors, only to feel slowly push us out, after their members became uncomfortable with the presence of our members,” he responded.
The conversation continued. “What’s the worst that might happen?” I asked.
“We have one member who can sing loudly, and sometimes off-key.” He paused, “And you might have someone read slowly, completing a communal reading after others have already finished.”
“Sounds like some of our current members.”
“However, they will usually be accompanied by the Chaverim program director or program rabbi, either of whom will help direct our members if necessary. Would you like to come by one of our events to check out the Chaverim members?”
“Why? Give me a heads up when you think there might be an issue. Make sure that in the early months you attend services only when I am leading them. That way I can witness and deal with any issues that might arise.”
So We Welcomed Chaverim
“Yes, we would love to welcome you,” I said. “Let me speak to our Board in two weeks, when I know they will openly embrace the idea and your members. We will extend to any of your members full membership at our synagogue. Two High Holy Day tickets per Chaverim member – one for the member, one for his/her driver or guest. We will make you, as Director of Chaverim, a complimentary synagogue member, so that we can give you access to our synagogue afterhours for use during your scheduled programs and classes. We ask only that your members fill out a synagogue membership form so we can get them into our system.”
“They should pay membership dues,” he said. “So that they have a sense of commitment. How much should they need to pay?”
“We won’t care. Whatever you think is appropriate. No more than $50; no less than $10. We only ask that they pay it in one lump sum, to ease the work on our bookkeeper. To make it easier, you collect the forms and information, and pass them onto my assistant, who will oversee the processing of the forms.”
“Are you sure you don’t want to meet them first?” he inquired.
“Listen, we pride ourselves on being a congregation that is open and welcoming. And we have families with developmentally disabled children and relatives. So no, I don’t need to approve them. They are Jews. Let them come home.”
Not a Mitzvah (good deed), but a Mitzvah (religious obligation)
It saddens me when I hear kvelling about how this synagogue or that is especially accessible to people with disabilities. This is no mitzvah (colloquially, a good deed); it is a mitzvah (literally, a religious obligation). It is the responsibility of every Jewish community to make Jewish life and celebration accessible to every Jew and Jewish family. We strive to remove stumbling blocks from before all Jews – including those with disabilities.
As expected, the Board discussion lasted less than five minutes. The motion to welcome Chaverim was a “no-brainer.” Our CFO and his wife volunteered to be the liaisons with the program; our Program Director was tasked with smoothing the process from the staff side. We created a new membership category called ‘Chaverim,’ though we were aware that it would be a few months before anyone would officially sign up.
The next week, we designated a few Friday nights as Shabbatot when they would officially come worship with us. As I had been informed, only a few Chaverim regulars showed up at the first services to check us out and to make sure we were welcoming. Based on guidance from the Chaverim Director, early in the service when we welcome others, I just said, “We welcome our members who are connected to Chaverim, a program for developmentally disabled adults, ages 18-88.” We did not ask them to identify themselves at that time; we let them just be Jews at services.
A Service Honoring Exceptional People
We are now close to a year into our relationship. I am told that Chaverim members have attended services regularly and appreciate NOT being singled out. They hang out at the oneg like everyone else; last week I enjoyed watching our president chatting up a few Chaverim members, just like she does ever other non-regular who shows up at services. A few read prayers in our annual Service Honoring Exceptional People (our annual “Special Needs” service); others sang along and just felt like they belonged.
All because of one 20-minute phone call, one email from the Rabbi, five minutes in a board meeting, and a few calls by the Program Director. All in the span of a month.
That, and because we took seriously the Torah teaching, “Do not put a stumbling block before the blind.” It should be that easy. Please tell us your story.
18 years ago, when I became rabbi at Congregation Or Ami, I was very thoughtful about what should be the first policies I asked the board to pass. The policy should reflect deeply held dreams of what a congregation should care about; it should illuminate important Jewish values.
I was thrilled when the board voted that:
Any child of a member has the right to a Jewish educational experience; and any child of a member, who works to the best of his or her ability, has the right and privilege of becoming a Bar/Bat Mitzvah at Congregation Or Ami.
This policy made clear our priority that children with disabilities – and their families – have a home in this congregation and every congregation. We trumpet loudly our commitment to people with disabilities on a special needs webpage, “No one is more welcome at Or Ami than you!” We effectuate this by making sure our staff and educators say “yes” whenever asked about whether a child with disabilities can become a Bar Mitzvah, and by ensuring that our learning programs are flexible enough to meet a variety of unique needs. We educate toward this reality by directing our educational leadership to work with families to ensure that each child finds a productive learning experience at Or Ami. We partner with Chaverim, a program for developmentally disabled adults, so that Or Ami is their synagogue home. We sponsor Brandon’s Buddies, a program which brings together typical and special needs children for friendship and play. We celebrate joyously the numerous B’nai Mitzvah of children with special needs. We blog about special needs and disabilities regularly.
I was overjoyed to read that the RACblog (of the Religious Action Center of Reform Judaism) was publicizing the good work of our Reform Movement congregations in the run up to February’s disability awareness month. (BTW, if you are not a regular reader of the Religious Action Center for Reform Judaism (RAC) blog, you are missing some important Jewish social justice blogging.)
Perhaps you will come to Or Ami’s annual Shabbat Service celebrating people with special needs on Friday, January 28, 2011 at 7:30 pm. Families with children with special needs are invited to register for a special Shabbat dinner beforehand at 6:00 pm (there is a fee for the dinner).
Mother’s Day. A celebration of those special people in our lives. I love my mother and my wife, the mother of my children. They were/are amazing. We will celebrate them, and hopefully give them a bit of a break today.
Here’s my “inspiring mother of the moment” who is uplifting others: Or Ami congregant Diane Simon Smith. Diane, a Woodland Hills therapist and mother of two children with disabilities, helped special moms raising special children with disabilities take a break and celebrate. As Sandy Banks in the LATimes (May 9, 2009)writes:
Deedra Williams doesn’t need breakfast in bed or a spa massage to celebrate Mother’s Day tomorrow.
She received her gift last weekend at a quiet Montecito retreat from 15 women who, like her, are mothers of children with disabilities.
They hiked eucalyptus-shaded hills, listened to music and made collages with pictures cut from magazines. They talked for hours about the challenges of mothering children who may never be able to walk or speak, to go off to college or get married.
And everyone knew better than to interrupt, criticize or offer advice.
“No one tried to fix it here,” explained Williams, a mother of two sons — a “developmentally typical” 7-year-old, and a 14-month-old whose newborn jaundice left him with brain damage, hearing loss and cerebral palsy.
“We can relate to what each one is going through because we’re all in the same boat,” Williams said as we sat at table at La Casa de Maria Retreat with four other mothers.
“What I took away from this weekend,” Williams said, “is acceptance.”
And what I took away was a new appreciation for the unconditional mother-love that many of us give lip service to, as we continually push our children to improve themselves, carrying around our mental check-list of all their shortcomings.
Raising a disabled child requires a sort of hyper- vigilance. “Motherhood amplified,” Nina Loh called it, describing life with her 7-year-old twins — a “typical” daughter and a son with spina bifida, who has had 13 surgeries and may need more. “The stakes are so high. And there’s really no end in sight.”
Woodland Hills therapist Diane Simon Smith knows the feeling well. The mother of two disabled sons, she began offering “Healing the Mother’s Heart” retreats six years ago, to give women a safe place to vent “the anger, the guilt, the joy . . . all the feelings.”
Smith’s first child was born weighing less than 2 pounds. He was blind, mentally retarded and was never able to “walk, talk, sit, use his hands or feed himself,” she said. He died of pneumonia at 17. His brother, two years younger and now 21, was born with Fragile X Syndrome, an inherited disorder that causes severe cognitive and behavioral problems.
I asked Smith if she felt cheated, robbed of some of the joys of motherhood.
Not cheated, she said, with its implied resentment and bitterness. Just sad, sometimes, “when I hear my friends talking about what their kids are doing . . . going off to college, getting married.”
Every woman around the table talked of feeling isolated, separated from the larger sisterhood of mothers.
“I never wanted to be different,” said Eileen Sunderland, whose 7-year-old son has autism. “I wanted to fit in. . . . But you can’t go to lunch with all the moms at preschool. You can’t meet them in the park, because you always have a therapy appointment or a doctor visit to get to.”
And what do you talk about, anyway, with a mom who complains that her daughter wants pricey True Religion jeans, when you’re trying to get your son to stop flapping his hands like wings.
Still, some said their children’s diagnosis provided an odd sort of relief — a validation of a mother’s instinct that something was wrong, or a vindication of their parenting.
“I thought I was an inadequate mother,” recalled Lisa Hannifin, whose 4 1/2 -year-old son was diagnosed with autism. “I wondered ‘Why am I so stressed out? Why can’t I take my boy to the market?’ Other kids sit in the cart and behave. There must be something very wrong with me.”
For others, the verdict triggered fear, panic and disbelief.
When her daughter, now 5, was diagnosed with autism three years ago, Julia Gosnell “was hyperventilating into a paper bag for 10 minutes.”
Gosnell had every prenatal test her doctor offered during her pregnancy, “because I did not want a child with a disability,” she said. “I really considered myself too selfish. . . . I was a workaholic . . . not really cut out for raising kids.”
But children can stretch a mother’s boundaries.
Since November, when Gosnell was laid off, she has been a stay-at-home mom. Last week, the child she once feared might not speak said, “Mommy, I want to teach you a magic trick.”
Tears spilled down Gosnell’s cheeks as she shared the story. “Her progress has been so astounding in the last seven months, and everybody agrees it’s because I’m home working with her. . . . I’ve learned about patience and love and how to give myself to someone else.”
And about how important a mother is to her child.
I had to admit on my drive home that I had visited the retreat to turn those moms into an object lesson. I envisioned this column as a reality check for mothers like me — a “see, it could be worse” reminder to count your blessings this Mother’s Day.
But it was their spirit, as much as their stories, that took me down a different path.
The way every description of a child’s disabilities also included the strengths their mothers see: The beautiful smile, the sense of humor, the determination, the innocence.
The way they never labeled their other children “normal,” just “developing typically.”
How much freer would we all be to love if we could let go of our preconceived notions of what our children should do or be? If I worried less about my daughter’s tattoo and appreciated her sense of humor more. Or focused less on the “C” in statistics class and more on the hard work she put in to earn even that.
These women are not saints or martyrs. But they see gifts where others might see only hardships.
“Write this column for them,” Smith told me, as the mothers packed their cars to head back to their families. They are not looking for pity or praise, just acceptance of their challenges.
“We’re not special,” she said. “We’re just human beings, doing what we do with love.”
Just like every other mother.
On Thursday, June 4th on the Dodger’s Stadium field, I will receive the EP Maxwell J. Schleifer Distinguished Service Award for Or Ami’s support of people with disabilities. The ceremony will take place sometime between 6:00 and 7:00 pm before the game. Come cheer on the Dodgers, Or Ami and the important work we do!
Our Congregation Or Ami believes that we are all created b’tzelem Elohim (in God’s image) and so we welcome all, including those with disabilities. We are extremely proud of our support of families with children with disabilities. Come cheer on the Dodgers, Rabbi Kipnes and Or Ami. Read our webpage welcoming people/couples/families with disabilities. (More nachas/joy: Congregant Dina Kaplan won the award last year.)
Brad Gore nominated me, writing:
It is my pleasure to nominate Rabbi Paul Kipnes for the EP Maxwell J. Schleifer Distinguished Service Award.
Rabbi Kipnes is by profession a community rabbi committed to opening up the Jewish community to people with disabilities, by avocation a tireless supporter of families with children with disabilities, and by familial ties, the brother of a man with Asperger’s. Rabbi Kipnes has touched the lives of thousands of families and inspired countless others to seek openness and equal access for people with disabilities.
In 1992, Rabbi Paul Kipnes convinced his then congregation, 900-family Temple Beth Hillel, Studio City, CA, to hire a Special Needs Coordinator to ensure that every child with special needs receives the support and attention he or she needs to grow spiritually, emotionally and intellectually as a member of the Jewish community. In 1998, the first policy Rabbi Kipnes asked his new community, Congregation Or Ami, Calabasas, CA, to enact was that “any child of a member who worked to the best of his/her ability had the right to a Jewish educational experience… and the privilege of becoming a Bar or Bat Mitzvah.” With that simply worded policy, Rabbi Kipnes ensured that families of children with disabilities – physical, mental, emotional or any combination – would find acceptance and a home in the Jewish community of the West San Fernando and Conejo Valleys. Rabbi Kipnes has spoken at national Jewish conventions on equal access, and consults with rabbis and congregations locally and throughout California on creating religious openness for Jewish families with disabilities. Whether in High Holy Day sermons or on his blog, Rabbi Kipnes is a tireless advocate for warmly welcoming people with disabilities into temples and the Jewish community.
HIS PHILOSOPHY ABOUT SPECIALNEEDS CHILDREN IN THE COMMUNITY
Rabbi Paul Kipnes teaches that “There is a sense that children with special needs, physically, emotionally, mentally, don’t have a place in the synagogue, in the Jewish community. That’s just not true, particularly here at Congregation Or Ami. We have celebrated B’nai Mitzvah services with children with autism, emotional developmental problems, intense dyslexia, Tourette’s syndrome… The Bible and Judaism are available for all of us.”
Rabbi Kipnes and his community emphasize that no matter what a child’s needs are, it’s never a question of if a child can become a Bar or Bat Mitzvah, it’s when the ceremony will take place. Rabbi Kipnes explains, “With special needs children, there are two values being played out, simultaneously. Working with Brandon Kaplan (one special needs teen), for instance, we saw that Brandon is a kid like any other kid created in the image of God, worthy of love. But Brandon is also a special kid and there is an honor and joy to the congregation that he participates to the fullness of his abilities. So he’s normal and special, but here’s the secret: so is every other kid.”
CREATING THE BRANDON KAPLAN SPECIAL NEEDS PROGRAM
Rabbi Kipnes and Congregation Or Ami created the Brandon Kaplan Special Needs Program to support the creation of Jewish educational, communal, and spiritual experiences for special needs children and their families within the West San Fernando and Conejo Valleys, irrespective of whether they are members of Congregation Or Ami. Oftentimes children with intellectual, learning or physical disabilities, and special health care needs and their families lack the Jewish spiritual support and educational opportunities available to able-bodied children. The Brandon Kaplan Special Needs Program helps to provide a safe, secure, enriching experience for these children, and in doing so we contribute to the overall quality of the entire family’s life. These families are already over-burdened by the extraordinary costs of providing specially trained teachers and aides, specialized educational tools and materials, therapies, and facilities. It is currently one of the few Jewish organizations in the West San Fernando and Conejo Valleys actively offering support to non-member families who are struggling to create Jewish experiences for their special needs students.
DEVELOPING A SPECIAL NEEDS SUPPORT GROUP
Rabbi Kipnes opened the doors of Congregation Or Ami to host a twice monthly Special Needs Support Group including no cost specialized childcare, which provided support, information and resources to parents of children with special needs. The Support Group is co-sponsored by local and county Jewish organizations including the Union for Reform Judaism, HaMercaz (the Jewish Federation’s Special Needs program), Heschel West Day School and Kadima Heschel West Middle School, among others. Members of the Los Angeles Jewish community who received support included families with a son moved to a specialized facility, a profoundly disabled teen (who signs, but does not speak), 20+ year old young men, children with autism, and children with epilepsy-induced learning disabilities.
TRAINING THE NEXT GENERATION OF RABBIS AND JEWISH EDUCATORS
Rabbi Kipnes believes that the key to gaining full equal access in the Jewish community for people with disabilities entails raising up a new generation of leaders committed to equal access. For the past four years, Rabbi Kipnes, in partnership with Hebrew Union College-Jewish Institute of Religion in Los Angeles (HUC-JIR), has mentored rabbinic and education students, usually in their 3rd or 4th year of a 5 year Masters degree program, on how to support special needs students and families. Each intern engages in regular phone calls to special needs families to gauge their experiences and develop plans to better integrate them into Jewish learning. With their mentor, Rabbi Kipnes, they explore pastoral counseling issues related to families with children with disabilities. They apprentice during decisions about whether and how to mainstream students for education. They learn to utilize a team approach to Jewish Special Needs Education bringing rabbi, educator, Bar/Bat Mitzvah tutor, classroom teacher, temple administrator and parents together to develop a synagogue IEP (Individualized Educational Plan) for special needs students and to work with educators and teachers to create classroom lesson plans appropriate for both special needs and able bodied students. This internship with Rabbi Kipnes is a much sought after placement for students at HUC-JIR.
USING NEW TECHNOLOGY TO SPREAD THE MESSAGE OF EQUAL ACCESS
Rabbi Kipnes has presented at national Jewish conventions on the use of new technology to teach and offer support. He has pioneered the use of temple webpages to trumpet the message of openness. Congregation Or Ami is one of the first congregations to have a webpage devoted to individuals and families with special needs. He ensured that the message of access appears in prominent places on the webpage, including on the temple’s home page. Review the Special Needs Webpage. His blog is provides insights, reflections and inspiration, with special focus on concerns of special needs families. Commenting upon Jewish issues, communal endeavors and poignant moments with special needs students, the blog garnered the attention of members of the local community and Jews all over the country. Review the blog.
CELEBRATING BAR/BAT MITZVAH CEREMONIES WITH JEWS WITH DISABILITIES
Whenever asked if a child with this or that special need could become Bar or Bat Mitzvah, the central Jewish “coming of age” ceremony, Rabbi Kipnes’ answer is always an emphatic “yes!” The Congregation has celebrated B’nai Mitzvah services with children with autism, emotional developmental problems, intense dyslexia, Tourette’s syndrome, Fragile X Syndrome and more. Young Brandon Kaplan’s Bar Mitzvah ceremony, reminded everyone that children with special needs can and should have access to all aspects of religious life. When 20 year old Matthew participated in a Sabbath service, the entire community celebrated but none more than the young man with Fragile X Syndrome. As his mother reflected, “Nervous though he was, he rose to the occasion and sang the blessings beautifully, with the flair of his personality shining through. I was so touched by your attention to him, allowing him to be himself.” Read about his participation.
CELEBRATING PEOPLE WITH SPECIAL NEEDS
Congregation Or Ami hosts an annual Shabbat (Sabbath) service, led by students with profound disabilities. The service was designed around their needs. The Temple engages a sign language interpreter. Worshippers come from all over Los Angeles and Ventura Counties, from the Chaverim program of Jewish Family Service, and from local synagogues. Parents of children with special needs receive special blessings from the rabbi, and expressed deep appreciation for the support. Other worshippers described the being deeply moved by the experience. In addition, the rabbi’s sermon at High Holy Day Community Family services focused on Special Needs children. Moreover, Rabbi Kipnes ensure that members of his congregation regularly volunteer to support Brandon’s Buddies, which brings together children (special needs and others) for fun, sports and other activities. They sponsor a team in the Shane’s Inspiration walk. They bring a group each year to Game Day at Dodger Stadium for Special Needs Families.
Rabbi Paul Kipnes has touched the lives of thousands of families with children with special needs throughout the Greater Los Angeles County. Because of his efforts, they have greater access to the Jewish community, special needs advocacy and education support. Because of his enthusiasm, families with special needs feel welcomed in the Jewish community. Because of his dedication, their children have reached religious maturity. Because of his inspiration, they have an open invitation to become more deeply involved in religious life. Through his many projects and efforts, Rabbi Paul Kipnes has demonstrated inspirational leadership in an effort to expand awareness about how people with disabilities can be productive citizens in our society. As such, I wholeheartedly encourage you to award Rabbi Paul Kipnes with the EP Maxwell J. Schleifer Distinguished Service Award.
While Or Ami was at Malibu Creek State Park for Seder in the Wilderness, past president took his son Brandon Kaplan (who signs, but speaks only sporadically) to the Grand Canyon.
Michael wrote me:
I often wonder what goes through Brandon’s mind at various times. When we approached the rim of the Grand Canyon, Brandon took his first look at the Canyon. He immediately signed “America the Beautiful.”
K’sheh nichnas Adar, marbim b’simcha. When the Hebrew month of Adar begins, joy is increased! How true, at least from my seat here in Jerusalem.
I lay down for my pre-Shabbat schulfee (nap), only to be so filled with memories and stories that I could only sleep for a few minutes.
Yesterday, Thursday, was Tel Aviv day. This would be my second full day in Tel Aviv/Jaffa this trip; possibly only my third week or so total in my lifetime. I’m an Oheiv Yerushalayim, a lover of Jerusalem, by nature. When the Psalmist wrote, Eem eshkacheich Yerushalayim – If I forget thee, O Jerusalem – I seem to have understood this to mean that I must remain focused on the Holy City. Yet these recent trips, spurred on by Tel Aviv Progressive Rabbi Meir Azari’s challenge to open myself up to Jewish life outside of Jerusalem, has led me to appreciate, even come to love, this modern Jewish city.
We heard Tel Aviv mayor speak of the importance of Progressive Judaism to Tel Aviv. Incidentally, he has been a major supporter of Beit Daniel and its community center, helping allocate land and allocate funds.
We took a walking tour of Jerusalem, led by two guides: an Israeli Jew and a Palestinian Arab of Israeli citizenship. Note the new way of speaking about the second: not an Israeli Arab, but a Palestinian Arab of Israeli citizenship. It is about identity. Years ago, many blacks decided to self-identify as African-Americans, instead of blacks, in order to grasp hold of their African descent. As we walked through Yaffo/Jaffa, we learned about the history of the port city from the perspective of two narratives: that of the Israeli Jew and that of the Palestinian. How to reconcile two “truths”? How to honor the reality each experienced, bringing wholeness to both communities?
The afternoon was a combined celebration of Israeli/Tel Avivi culture and arts, as well as a reflection on issues of social justice. Any Bar Mitzvah student will tell you that when the Torah instructs us in Leviticus 19:4, “You shall not curse the deaf, nor put a stumbling block before the blind…”, it was urging ethical action toward all those with disabilities. Our actions must be more than just not placing a block; we must work to embrace those with disabilities. Thus, the production of Not by Bread Alone, a play whose theater assembly is comprised of people who are deaf and/or blind. A majority of the actors suffer from an inherited genetic disorder called Usher Syndrome which initially results in acute deafness and which is followed by loss of vision. Their production was moving, engaging and thought-provoking. Rather than worrying about the stumbling block placed before them, these “disabled” actors removed the block that keep so many from seeing “disabled” as merely “differently abled.” Bravo to the CCAR for providing us with an artistic experience, a social justice encounter, and a wonderful day!
More reflections on the CCAR conference at Ima on (and off) the Bima (Rabbi Phyllis Sommer), Divray Derech (Rabbi Rick Winer), Desperately Seeking Sinai (Rabbi David Cohen). Also check out the official CCAR Israel Convention blog.
Any other CCAR rabbis blogging the convention? Email Rabbi Paul Kipnes, and we’ll link your blog to the CCAR Israel Convention Blog.