Tag Archives: autism

The Favorite Student

Sandra Morton WeizmanBy: Sandra Morton Weizman

My son, Benji, was diagnosed with an autism spectrum disorder at the age of two and a half. One of the characteristics of autism is the preponderance of obsessive or perseverative interests that can become a single-minded focus, becoming all the individual wants to talk about. Common obsessive interests for kids on the spectrum include trains, sports teams, snakes, prehistoric animals, computers and electronics. My own son’s special interest is everything to do with Judaism, and particularly Jewish customs and rituals. He has had this special interest since the age of two; he is now 19 and it has never wavered. He has always been happiest when he is praying.

When he was four years old, the psychologist who used to do his annual psycho-educational assessments was interested in evaluating his imaginary play skills, since lack of appropriate imaginary play is a hallmark of autism. She asked him to role-play something with her, suggesting playing house or playing doctor as possible choices. He replied, “Let’s play synagogue. I’ll be the rabbi.” The psychologist had never been to a synagogue before and didn’t know how to play.

When we began planning for Benji’s bar mitzvah, Sandy, the woman who used to tutor him privately in Jewish Studies and had a special education background, strongly urged us to approach Sam, the man who tutored all the boys in our shul (synagogue). Sam was initially reluctant to take Benji on as a student, reiterating that he wasn’t sure how much Benji would be able to do. He told me that he wanted to audition Benji to determine if he could carry a tune and that he wouldn’t guarantee that he would take him on as a student. I wasn’t particularly phased by this, but when I mentioned it to Sandy, she indignantly responded: “This is not about being a Pavaroti. This is about a young man’s relationship with G-d!”

For Benji, his bar mitzvah lessons were the highlight of his life. Not only did he devote countless hours to practicing each and every day, he became so absorbed that when he wanted to just relax in his bedroom, he would listen to Sam chanting on his cassette player. Each week after the Sabbath service, I would observe Benji approach Sam and tell him how excited he was for his upcoming lesson the following day. Gradually, Sam would beam. After all, how many 12-year-old boys had ever told him that and meant it so sincerely?

After three months of lessons Sam reported that Benji would be able to do everything expected of a bar mitzvah boy in an Orthodox synagogue, including the entire Torah reading, the haftorah (reading from Prophets), Musaf prayer service and Dvar Torah (speech). After six months, Sam claimed that Benji was the best student he had ever taught!

bar mitzva

At the bar mitzvah, Benji’s voice filled the sanctuary with the volume and confidence of a grown man. While it was difficult for me to see over the mechitza (partition), I heard from others that the same men who had been the most intolerant of Benji’s behavior problems when he was younger, were the very ones who were choking back the tears during his flawless Torah reading. When it was time for Sam to address him on the bimah (pulpit), he announced that tutoring Benji had been the most unparalleled experience of his 35-year career as a bar mitzvah tutor and he promptly burst into tears. If I told you that there was not a dry eye in the sanctuary, it would be a gross understatement as many congregants had tears streaming down their faces. Even our rabbi was too choked up to give his Dvar Torah, stating that he was too overcome with emotion to say a single word.

For the next two weeks my husband and I were overcome by letters, emails, cards, flowers and library books donated in Benji’s honor. Most of these were not even from our invited guests, but from members of our congregation who had watched Benji grow up. We received letters from people telling us that Benji had inspired them to overcome all of their personal challenges in their lives. His bar mitzvah was a testimony to the resilience of the human spirit.

A couple of days after the bar mitzvah, Benji left for summer camp for six weeks, returning in mid-August. The Friday morning after his return, Sam called to say that he wouldn’t be at shul the next day for Shabbat, but that he was ready to resume his more advanced Torah reading lessons with Benji that Sunday. When I informed him that we were going to take the rest of the summer off and would resume after Labor Day, I detected the disappointment in Sam’s voice. The once reluctant tutor could hardly wait to resume lessons with his favorite student!

Sandra Morton Weizman chairs the Inclusion Task Force for the Calgary Jewish Federation in Calgary, Alberta, Canada. She is a Museum and Heritage consultant and the mother of two adult children, one of whom has an autism spectrum disorder.

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Strangers Among Us

Rebecca SchorrBy: Rabbi Rebecca Schorr

The holiday of Passover is our annual reenactment of the journey our ancestors took out of the land of bondage towards their destiny of freedom in their own land. Much of the meal concentrates on the meaning of slavery as well as the responsibility of freedom.

One of those responsibilities is reiterated over and over in the Tanach (Bible): “you shall not oppress the stranger.” Why? We are told that it is because we were strangers in the land of Egypt. In other words, from our own experience, we should know better than anyone else what it is like to be an outsider. The frequent repetition of the theme of welcoming the stranger signifies the importance of our obligation towards the vulnerable in our society. We are instructed not to wrong the stranger, but not doing harm to someone is not the same as welcoming him or her.

In Exodus 2:22, Moses’ first son is born.

And she [Tzipporah] bore a son, and he [Moses] called his name Gershom; for he said: ‘I have been a stranger in a strange land.’

So much did Moses feel set apart from others in his adopted country of Egypt that his son bore a name reflective of Moses’ discomfort. “A stranger in a strange land.”

I think of this phrase every day as my son, Benjamin, walks into the house after school. As a teen on the autism spectrum, he maneuvers through his day without truly understanding the verbal and nonverbal social landscape. His reports of his social interactions bespeak of his continued confusion as one who is not fluent in the vernacular language and mores.

ben and RebeccaBen’s days are long. He expends a great deal of energy trying to figure out how to insert himself appropriately into conversations with his peers as well as how to participate in group activities. Things that require little effort for those who do not have social or developmental disabilities require intense concentration for Ben. Before I go to sleep, I peek in and watch my exhausted son as he slumbers. All signs of stress and anxiety are erased from his face, and I breathe a sigh of gratitude that he is able to escape, if ever so briefly, from the strangeness of his life.

How often do we come into contact with individuals who seem extraordinarily awkward? Or socially inept? Are we impatient with them? Do we ridicule them? How different might we treat them if we shift our perception?

Imagine that you are working on a project with someone. The instructions have been given several times. And the day before the due date, this individual asks for clarification (again) for something that has been explained in numerous emails.

It’s annoying. It’s aggravating. Infuriating, even.

So let’s reframe it: Let’s imagine this woman has a processing issue.
And that much of her life is spent not understanding what is expected of her.
That would be so hard, don’t you think?

That is how we welcome those who try to function in our strange land. By making allowances for all types of differences. By reframing situations in order to be more understanding. To be kinder. To be more gracious. Simply by remembering that we too were once strangers in a strange land.

Ordained by the Hebrew Union College-Jewish Institute of Religion, Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow, a contributing author of The New Normal: Blogging Disability, and the editor of the CCAR Newsletter. Writing at her blog, This Messy Life, Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Engage with her on Twitter!

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The Trials And Tribulations Of Raising A Taxpayer

Andrea GruberBy: Andrea Gruber

  • 500,000 individuals with autism will enter the job force during the next decade.
  • 65% of adults with disabilities are unemployed.
  • Hiring a person with a disability should not be considered charity. It is a sound business decision that brings well-qualified talent into the workforce.

I think about these statistics each and every day. They haunt me like a bad dream, and float in and out of my consciousness continually. I am driven by pure selfishness to see that these statistics do not define my son. I am the mother of an incredible young man. Marc is disciplined, hardworking, congenial, and driven to succeed. However, he has one obstacle standing in his way to long-term, meaningful employment: Marc has autism. Sadly, this single characteristic will completely overshadow all of his incredible skills and attributes in many areas of his life, especially when it comes to establishing a career.

I have three children in their 20’s and, like most parents, I want my grown children to find work that they are passionate about—jobs that not only provide them income, but also get them out of bed every morning with enthusiasm and commitment. Together with my husband, we are raising taxpayers; these are individuals we hope will work hard in a meaningful job and enjoy a rich and full life. Unfortunately, the world at large does not share our vision. As difficult as it is for a typical young adult to find his or her place in the world, a person with disabilities is that much more challenged.

Our family lives in a suburb of Detroit, Michigan. But, before you roll your eyes and think, “No wonder this young man cannot find a job,” I would like to tell you that Detroit is not what you have been led to believe on the national news. There are many opportunities here. Our area is slowly growing and its residents are committed to seeing Detroit revitalized and reborn. With that said, the economics of our area do increase the difficulty in finding employment for a person with disabilities. This is a national problem.

Marc GruberFew employers seem to realize that individuals with learning differences can bring myriad skills and talents to the workplace. In fact, it has been statistically proven that individuals with disabilities increase the overall quality of the workplace. Walgreen’s, KPMG, Merck, and SunTrust Banks have all experienced this firsthand. Each of these businesses has achieved high levels of success by employing individuals without typical resumes. For example, at one of the warehouses that Walgreen’s operates, 40% of the staff members have disabilities. It is one of their highest-producing facilities in the country. All of the employees work together and bring their skills and talents to the workplace to make this facility an incredible success.

April is Autism Awareness Month. This means 30 days during which parents, educators, organizations, and all those touched by this lifelong disability try to teach others about living a life with autism. I am hoping that within the next 30 days, there will be an employer that will look at my son’s resume and be persuaded to hire him because of his ABILITIES, not the things he cannot do. My son, like so many of his peers, is capable of much more than sweeping a floor, folding laundry, clearing a table, or watering plants. My son is bright, disciplined, hardworking, driven to succeed, and congenial, and one day he WILL be a taxpayer.

Andrea Storch Gruber and her family reside in Southfield, Michigan. She is a member of the statewide group, Parents Raising Taxpayers. Most recently, Andrea helped to organize a Community Conversation to bring light to the issue of employment for individuals with disabilities. Her son, Marc, has participated in Atzmayim, Camp Ramah in Wisconsin’s Tikvah Vocational Program, which receives funding from the Ruderman Family Foundation. His resume and visual portfolio are available upon request!

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When The Time Comes

Below is a speech given at the graduation ceremony for this year’s participants in Camp Ramah California’s Ezra voc-ed program.

Shaina BarnettBy: Shaina Barnett

Hello and bruchim habaim (welcome), everyone. My name is Shaina Barnett and I’m graduating this summer. I started in the summer of 2008 and entered the Ezra Staff Program in 2010, making a total of six summers here at Camp Ramah. Since joining Ezra, the jobs I’ve had were from helping sorting out mail, to working outside of camp at the Humane Society of Ventura County. The opportunities I have experienced while holding these jobs gave me a sense of confidence as well as feeling more responsible as an adult. Some other things I’ve learned about being in Ezra are how to interact with my peers, which is not always easy, and I’ve learned to be well aware to listen to others and be clear what my supervisors tell me.

To me, camp is one of many things: my second home, my own perfect world, a place where I can feel safe and where such magical things happen, cliche as it sounds. I feel that in this sacred and condensed environment, we are a community of more than just Jewish people. We are a community as a whole. Which is why I thank God that the Tikvah Program exists.

Growing up with autism all my life, the struggles and obstacles life threw at me were a constant battle. I never really knew or understand human relationships and had trouble trying to blend in or even structure a simple conversation. Relationships such as with friends or my siblings were strained because I never felt like myself; I always had to be someone else, desperate for acceptance. But Camp Ramah changed all that. With an environment structured with people from all walks of life, the feeling of being welcome among my peers and others of all ages is an overwhelmingly amazing feeling. I feel safe from harsh judgments and over time spending my summers here, I grew to accept the person I am. I am no longer ashamed of my autism. Even my social skills have improved greatly as my perspective of life and my spirituality.

As a young Jewish woman, my pride in my heritage grew at camp. Although the pride was always there, being at camp with Jews from all backgrounds and with Tikvah’s help making connections with other campers and staff helped me apply the teachings of Torah to my everyday life. This year, I achieved my desires of making my own tallit and speaking about my autism to the Machones on behalf of the Tikvah Program. These accomplishments will always be a reminder to me of what I can achieve.

California tikvah

We have all heard the expression “when one door closes, another one opens”. After moving out of my parents’ house the previous year and virtually living independently in my apartment, I knew I am ready for bigger challenges and better things life has to offer. The Tikvah Program helps and understands that. As adults, we have the obligation to move forward in life for life is not stationary. Of all the hardest decisions and transitions I have made in my life thus far, leaving camp and graduating Ezra is without doubt the hardest transition for me, because this to me is my home. Though many tears will be shed, we must remember that we the Jewish people have a saying for such transitions in life: we must remember that goodbyes are not forever, but a l’hitraot, until we meet again. Because we stuck together as if we were family and we shall forever more stick together in our hearts. With that being said, I wish you all good luck and success in your endeavors and a long, happy life.

I would like to take this time to thank all those who gave me not only six memorable summers here at Camp Ramah, but who have influenced me in my life. I would first like to thank my family and friends for their tough love and support to making me the person I am today and for giving me motivation to go forward. I give my thanks to my many awesome coordinators, to Deborah for her wisdom and teachings of Torah and Rabbi Joe for successfully running this wonderful place and making it better year after year.

Thank you Elana Naftalin-Kelman for her love for us and her endless hard work which enabled us to come together and build friendships and memories that would last a lifetime. Thank you David Abraham, our best friend, our big brother. His guidance and unlimited patience as he gave us tools to survive adulthood in the workforce are what truly benefit the Ezra Staff.

When I think of David, Elana, and those who I give thanks to, I think of the song, Darkeinu, Our Path. For we bless God for keeping us on the path we want to follow and we bless our staff and coordinators for helping us pursue our path. I am aware that following my part is no easy task, but I will prevail. I am no longer afraid of what is waiting ahead of me because I have already conquered challenges that lie behind me. I always mention the words “when the time comes…”, and now this is my time. This is my year. And I will own it and succeed. My heart goes out to you all and you will always be in my heart. A huge and ultimate Todah Rabah (thank you) to all of you for six memorable summers here at Camp Ramah. Todah Rabah.

My name is Shaina Roxanne Barnett. I am 22 years old from the San Fernando Valley in Los Angeles, CA. I’ve been going to Camp Ramah in California for 6 summers and 7 sessions. I’m a student at Los Angeles Pierce College and a secretary at the Pierce College Gay Straight Alliance as well as a lead singer in Temple Aliyah’s OurSpace program called Kolot Tikvah. I love music, art, animals, and teaching the world about Autism and advocating for human equality.

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The Place We Want To Be

Melissa RingoldBy: Melissa Ringold

Finishing up the school year.  Packing up my classroom for students with autism.  Getting my twins ready to start summer camp.   About a thousand calls and emails to rearrange our weekly therapies to fit into our new summer schedule.  Making sure the day camp staff knows about Ross’ needs.  Preparing my lessons for the summer school program I will be teaching in a couple of weeks. Planning the twins’ birthday party.  Preparations for my brother’s wedding.  Squeezing in regular summer fun like going to the pool and playing outside.  Scheduling yet another evaluation for Ross.

This is what summer means for our family.  We are busy, always.  The reality of life as a single mom of two kids with disabilities, is that everyday things are just a bit more hectic, life is just a bit more amped up and everything takes a bit more planning.  It is so worth it, though.  Every single time my kids succeed at a new skill, experience a new environment, or just giggle, I am reminded how very worth it is.  The chaos has meaning, the goals are clear.  I am working hard to give them everything they need, and much of what they want.  Sometimes, though, it is hard to remember to slow down and appreciate what we have, what we have accomplished, how far we have come.  There are always new treatment plans, new goals, new challenges.  Always, always more work to be done.  It is important, though, to stop.  To breathe.  To feel.  To be proud.

For our family, Camp Yofi at Ramah Darom is that oasis.  During our time at Camp Yofi, all we have to focus on is having fun. There are no goals, no therapies, no standards to meet.  There is simply acceptance of each individual for who they are, for the joy each brings and the creation of true chaverim (friends).  During the year, when things get stressful, as they often do, my boys and I frequently talk about Camp Yofi and how much we’re looking forward to our return.  Quite often, Riley bursts into song, singing with his sweet little voice and poorly articulated R’s and S’s.  “Yofi is the place I want to be…Yofi is the place for you and me.”

Credit: Asher Krell

Credit: Asher Krell

At Yofi, every single moment of the day and night, is structured to make sure that every participant is safe and happy.  It feels as if a world has been created that perfectly fits our kids with autism, rather than trying so desperately hard to have our kids with autism fit into the world, as we do year-round.  The human chain of counselors that so casually, and yet so vigilantly, is formed around outdoor activities provides a sense of safety that is unheard of for many families of kids with autism.  The supervised playrooms after meals, allowing adults to finish eating and even (gasp!) have a conversation is a blessing.  The awareness of sensory needs, communication differences, the need for routine and structure are all embedded in every part of every day.

As a result of all of this careful planning and preparation, there is a feeling created at Camp Yofi that is so powerful and yet difficult to describe.  There are intense, meaningful friendships created between the families, between parents who recognize others who are on the same journey.  There are families who have been coming to Yofi together for several years, who look forward to seeing one another each summer.  There are new families, like we were last year, who soon fall under the spell that is Yofi.  In this age of social media, families use Facebook to connect year round, to share our joys with people who truly get it.  Yofi provides a place, a time, an experience like nothing else in our lives.  From the moment we headed home last summer, we have been counting the month and weeks and days until we return. Camp Yofi is the place we want to be.

Melissa Ringold is the proud mom of twin boys and an Autistic Support Teacher in the Pittsburgh Public Schools.  Learn more about Ramah programs for children, teens, and young adults with disabilities.

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Sibling Journey

Renee Claire Eliana Sibs Journey croppedBy: Renee Frederick, Claire Nuchtern and Eliana Rosenthal

We met at Jewish summer camp in 2010 at Brandeis University. This summer, we decided to take the lessons we learned at our community-service oriented program that summer and turn them into action. We are three college students driving around the country interviewing siblings of individuals with developmental disabilities. This issue is dear to our hearts because two of us have siblings on the Autistic Spectrum. Before this trip, we found it incredibly hard to find diverse stories about how having a sibling with a disability affects other siblings. Funded by an “adventure” grant from Princeton University where Claire studies, we decided to broaden the narrative on the sibling experience by interviewing as many sibs as possible, ranging in age, ethnicity, gender, and socio-economic status. We began in Houston, Texas and are driving in a circle until we end up back there.

One of our favorite stories that occurred on the trip thus far is from New Orleans, where we interviewed two boys who are two thirds of a whole in a set of triplets. Their sister has autism and a seizure disorder. As we have seen many times, sibs seem to grow up much faster than other neuro-typical siblings, exhibiting maturity comparable to graduate school students or wise grandparents. The boys told us about how responsible they feel for their sister and how they stand up for her when others tease her, even when those others are adults from their church. They choose their friends based on whether or not they get along with their sister and they plan to care for her together for the rest of their lives. Their parents never prodded them to do any of this.

Renee Claire Eliana Sibs Journey IIThis is one of the more positive stories that we have heard, although we have also been witness this summer to a lot of the guilt, resentment, anxiety, and frustration that many times go hand-in-hand with being a sibling of someone with a disability. We have heard siblings say they want to care for their sibling for the rest of their lives. We have heard siblings say that once they are out of the house, they are finished. No one is to say which story is more valid or conventional as every story we listen to is drastically different from the one we heard earlier that day. Our goal is to broaden the narrative, see what services are available for siblings and where support services are lacking.

So what’s next? The easy answer is Claire will give a quick presentation at Princeton and Ellie will use the research for her psychology major. But, that is far from all. We have looked into the idea of writing a book, of starting youth clubs, of having a sibling conference. Our main goal is to provide a network of resources for sibs, of other sibs, organizations, and opportunities to share their stories. We believe that helping to build and strengthen a vast network of sibs would allow the community to become more outspoken advocates for themselves and their siblings.

Renee Frederick, Claire Nuchtern and Eliana Rosenthal are the Sibs Journey Team- three college students on a cross country journey this summer to learn more about what it is like to be a sibling of someone with a disability. Claire is at Princeton University studying history, Ellie is at Brandeis University studying Near Eastern Judaic Studies and Psychology, and Renee at University of Texas-Austin studying Plan II Honors and potentially Urban Studies or Public Health.  Follow their journey on their blog, read more on Facebook or connect with them on Twitter.

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Who Will Save My Child?

Tzuriya family

Today’s post is a firsthand look at being a parent of a child with Autism.

by: Hadas & Ariel Tzeruya

It was a bright, sunny day when our sky turned dark.

At the age of two and a half, our child was diagnosed with Autism. Staring us in the face, black on white, were the words from the health clinic doctor: ‘Child with Autism.’ One hour earlier he was a precocious, beautiful child and now he was a precocious, beautiful child with Autism.

If you do not have a child with Autism, you can’t understand. The daily challenge, the wars that start anew: An asymmetrical battle for attention between our son and his siblings. Dealing with his disability- hoping he’ll speak, learn how to write, stop endangering himself. Fighting with institutions- co-pays to the health clinic, recognition of his disability so he receives extra inclusion hours at school. The dilemmas- if I get angry at him, will he even understand? Why won’t he hug me?  How do I even know if he’s capable of loving?

And on top of everything: Who will save my son? As a family, we embarked on a journey to save Dvir and every one of us has to do their share.

tzureya kids“You only love Dvir! You always take him wherever you go,” complains his little sister, who cannot comprehend that Dvir needs multiple appointments and therapies to even have a shot at a normal life, not dependent on others. His older sister explains: “Dvir has difficulties and needs lots of training and therapy so he can be like other kids his age.”

“Watch him, he’s gonna break that!” cries his worried grandmother, as Dvir holds an expensive vase. The grandfather replies, “Leave him alone. We’ll just move the vase.” Yes- life is full of conflicts and our ability to deal with them is ongoing.

Dealing with public institutions can be exhausting: refunds from the health clinics, disability payments from National Insurance, handicapped parking sticker from the Ministry of Transportation, working with numerous non-profits. You think it’s easy? It’s a never ending battle. Each little piece of bureaucracy demands time, strength, resources and much patience.

But there are many rays of light. Every time he makes even the slightest advancement brings with it great joy. The fact that our family and friends help and support us gives us strength. Dvir himself is a source of pleasure and happiness. Sometimes he’ll ask an overweight man in the elevator when the baby is due or tell an elderly person that they have hair of a witch. We turn red from embarrassment on the outside but inside we are bursting with laughter.

We have learned to find the rays of light that allow us to grow. A support group of parents started by the Ruderman Family Foundation and the NGO ‘Kesher’ has helped us learn to deal with Dvir’s disability. The group members come with no pre-conceived notions. We work together to create, grow and empower ourselves to do what’s best for our children.

Sometimes, when there are many battles being fought on too many fronts, maybe I want to leave it all, shut the door, hang up the phone, close the light and disappear. But then you look at your son’s face, the thin smile he throws your way and you understand that it’s in YOUR hands! If you don’t fight, he won’t be saved. You, your family and your friends have the power to save your child!

Ariel & Hadas are the parents of Noga, Dvir, Yuval and Yarden

In Rechovot, Israel a support group for parents with children with disabilities has been established with the help of the Ruderman Family Foundation, Rechovot Municipality, AKIM-Rechovot and more. The parents work together to address quality of life issues and to ensure that no family is alone.

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