Watching the final outs of the seventh game of the World Series last month, I couldn’t help wondering whether the San Francisco Giants’ left-handed pitching star, Madison Bumgarner, was Jewish. I texted a friend to ask what he thought. This is a silly, parochial little game of mine, one pretty much ruined these days by Google. Bumgarner is not Jewish. You can indeed look it up, as Casey Stengel might have said. Still, it’s the kind of speculation I’ve been indulging in since I was a kid; since another left-handed ace, Sandy Koufax, refused to pitch in a World Series game because it was Yom Kippur. I remember being inexplicably proud back then, feeling the curious sense of allegiance that comes with discovering you’re part of a tribe and, better yet, you have your very own champion. The feeling is ancient, even primitive, and has its dark side, of course. But its appeal is hard to deny.
For instance, when my son Jonah returned from Camp B’nai Brith last summer, we learned he had been on the green team for various activities. We knew this because he wore his green t-shirt to bed the first few nights he was home. This is an unusual sort of attachment to others for Jonah, who is on the autism spectrum, and one we are grateful he had the chance to experience at camp.
Last month, I chronicled some of the more isolating treatment my wife, Cynthia, and I have endured over the years when we’re out with Jonah. But there was another story I wanted to share about receiving a very different kind of treatment. It didn’t seem to fit in the previous blog. It fits here, though.
In September, Jonah and I went to the bakery on a mission. We were to buy a dessert that was nut-free, a dessert we could then bring to a house where people suffered from severe nut allergies. As a result, I was being extra careful, studying the display case where the cakes and pastries were kept. In the meantime, Jonah was standing at the counter, in front of the clerk, who had shown up to serve us. Jonah was involved in his own kind of study, which is to say he was staring at the brownies directly behind the clerk.
This was, coincidentally, the same moment I decided I needed some help making my choice and I called out to the clerk. “Does the chocolate cake contain nuts?” I asked, once I’d caught his eye.
But he ignored me. The clerk, a tall, handsome young man, seemed not especially interested in doing his job. So I asked my question again. This time he looked right at me, glared actually, with an expression full of unconcealed contempt. When he looked away it was to turn to Jonah and ask my son if he could help him. Jonah didn’t say anything. No doubt, he was thinking of what strategy he could use to convince me to buy him a brownie.
“We’re together,” I finally said, patting Jonah on the shoulder. The clerk’s dark expression lightened gradually. He told me all the cakes were nut-free and I could choose whichever one I wanted. When I was paying, he apologized for his dirty look. He also explained the reason for it. As far as he was concerned, he had been waiting on Jonah and I was pushing in line in front of him.
“I have an older sister who has special needs and I don’t like to see people like her taken advantage of,” he said. “I have seen it way too many times.” I knew exactly what he was talking about and immediately felt a kinship with this young man I’d just met. I think I saw his eyes well up; I know my mine had.
Then as we were leaving the bakery, the clerk called Jonah over and handed him a small brown bag. It had a brownie inside. “It’s on the house,” he said. It was a tiny, touching gesture. And it also felt like more than that. Like we had discovered we were on the same team, part of the same tribe. Most of all, I was proud of him for defending his sister and my son – for being his champion. I felt a little like I was watching Sandy Koufax take to the mound all over again.
In his prize-winning book, Far from the Tree: Parents, Children, and the Search for Identity, Andrew Solomon writes about kids with a wide variety of disabilities and specials needs, including autism. The book took Solomon 11 years to write and what started out as the story of the differences that have so often divided and isolated us ended up being the story of how “difference unites us.” So many more of us than ever.
These days, Solomon adds, “The exceptional is ubiquitous; to be entirely typical is the rare and lonely state.”
For the last few days, I’ve been walking around the house singing and dancing more or less in tune and in time with the Pharrell Williams song “Happy.” The reason is simple and seems, at first glance, rather materialistic.
You see, my wife, Cynthia, applied for a First-Time-Camper Grant for our son, Jonah, from a program called One Happy Camper and she got it. We received a $1,000 credit towards Jonah’s stay at sleep-away camp this summer. His eligibility for the money hinged on four facts. First, he’s Jewish and lives in Montreal where Federation CJA (Combined Jewish Appeal) partners with the Foundation for Jewish Camp in sponsoring the program. (Similar partnerships have been set up in close to 40 other communities across the U.S. and Canada.) Second, Jonah is going to a Jewish camp this summer. Third, he doesn’t attend a Jewish Day School. And, fourth, he will be attending camp for longer than 19 days, or a full session, for the first time. Those are the questions Cynthia spent a few minutes answering the online the other morning at OneHappyCamper.org. By the afternoon, Jonah’s camp had received the money on his behalf.
And while the $1,000 is great, it’s not the money that has me smiling and singing off-key. It’s the fact that it was so easy to get. I’m a writer who has both received government grants for projects and served on juries for other writers applying for those grants. I know how complicated most bureaucratic procedures can be. I know how much time and emotional energy it can devour. I’m also the father of a son with autism, as I’ve mentioned here before, which means my wife and I have spent a fair amount of time, spare and otherwise, jumping through hoops, filling out forms, and cutting through red tape just to get our son the services he requires. With One Happy Camper, the premium that was put on ease and simplicity was what my family appreciates most. Oh yes, my son’s autism was not a factor one way or another in this funding, which was also nice for a change.
“We want to make this as easy as possible for families,” Veronica Klein told me when we spoke the other day. Klein is a professional associate at the Generations Fund Jewish Camp Initiative, Federations CJA, and has been overseeing the One Happy Camper program in Montreal since 2008. “The idea behind the grant is to offer it as a kind of coupon, a spark or incentive for someone who does not attend Jewish Day School but who can still be able to experience that immersive quality of Jewish life at camp.”
Klein describes herself as a product of the Jewish summer camp experience as well as the Montreal community. She started going to camp when she was 12. That led to working with the community and working with kids here in Montreal and in the U.S. Klein could also be the poster person for the proven long-term impact and influence Jewish summer camp appears to have on its participants. Research seems to show that Jewish overnight camp can turn kids like Klein “into spirited and engaged Jewish adults” and “lay the groundwork for strong Jewish communities.”
“Camp is fun,” Klein adds. “But it’s not just flip-flops and canoes. Statistics bear this out. For example, kids who attend Jewish overnight camp are 10% more likely to marry inside their faith and 25% more likely to contribute to a Jewish charity. A program like ours is just another way to invest in the Jewish future.”
For me, it’s even simpler than that. I’m just pleased to know that there’s a good idea out there being executed efficiently. And because it is, my family and I are all happier campers.
For more info on One Happy Camper, visit their website here.
When you’re the parent of a child with autism, you’re always bracing yourself for the endless string of theories headed in your direction. They come from health care professionals, the media, family, friends and, my personal favourite, complete strangers. One woman we barely know keeps asking my wife, Cynthia, for a sample of my son Jonah’s urine so she can run her own tests on it.
The good news about all this is it helps you develop a thick skin, though never quite thick enough. I figured out pretty soon on this journey through what is sometimes called Autismland that the reason theories about autism are so plentiful is directly related to the fact that no one really knows anything definitive about it. In my experience, that includes mental health professionals who are, when it comes to matters of the brain, only guessing.
And the guessing persists. As do the studies generating all those theories. The latest trend in studies has put the emphasis on the ability of parents to cope with the challenges of autism on a day-to-day basis. Researchers seem determined to prove, every few months or so by my count, that there is a connection between raising a child with autism or other special needs and higher levels of stress as well as greater financial and marital challenges. Of course, whenever Cynthia and I hear about the latest results of one of these so-called “well-being” studies we roll our eyes and say pretty much in unison: “No kidding.”
“They could just ask any of us if we’re stressed,” Cynthia invariably adds. “They’d save all that money on research and they could use it to take us all out for dinner and drinks, lots of drinks.”
Or, in our case, they could buy us time to be more organized. In last month’s blog, I confessed we were behind in registering Jonah for summer camp. We’re still behind. That’s because chaos – missed deadlines, unmet obligations, double-booked appointments – has become the rule in our house. I would write a to-do list of all the things yet to be done, but frankly who has the time? or the confidence that it won’t get lost in the clutter?
As defined by WhatIs.com, chaos, with reference to chaos theory is, “an apparent lack of order in a system that nevertheless obeys particular laws or rules.” In other words, laws or rules you’ll never predict or figure out. But parents of special needs kids know that already. We have learned to expect the unexpected. Feeling stressed and overwhelmed every day is just part of that. Of course, there’s an advantage to living in a state of chaos. You’re hardly ever bored. Now, if I could just remember where I put that summer camp registration form.
Last week, the Foundation for Jewish Camp hosted our biennial conference, Leaders Assembly, in New Jersey. The topic of inclusion was high on the agenda and I engaged in so many invigorating conversations with colleagues about the topic and what each camp hopes to achieve within their own camp communities. Alexis Kashar, a civil rights and special education attorney, spoke to attendees about how growing up deaf impacted her access to the Jewish community. I was particularly struck by Alexis’ description of the effect that living in a home with a family with two parents and a sibling who were all deaf had on her sister who is hearing. Because synagogue life and supplemental school were inaccessible to the family, her sister was never introduced into it. Alexis stressed to us how inclusion has a ”ripple effect” and can profoundly affect the lives of the family of the person with disability.
Just one day after the close of the conference, I read the report that had just been released from the Centers for Disease Control and Prevention announcing that the escalating numbers of Autism Spectrum Disorder (ASD) diagnosis continued to rise. According to the report, one in 68 children are now believed to be diagnosed with ASD, a group of developmental disabilities that can cause significant social, communication and behavioral challenges. It reaffirmed for me the important work that our camps can do to engage children with disabilities and their families and continuing to evolve in order to embrace them in the best way possible.
People with ASD are common and prevalent members of any group of youth or adults. The drive towards inclusion is recognition of the new normal in our lives. In the past, specialists were sought to address the particular needs of individuals who “didn’t fit,” in a hope to “help them succeed.” But the numbers tell us that this is not a fringe issue. As camps continue to accept more and more children with a variety of disabilities, I hope that staff training focused on caring for children with disabilities will be offered to all staff so that everyone can better understand and interact seamlessly with a variety of capabilities and needs. Sports specialists, swim instructors, and other recreational specialists will likely be challenged to use techniques that will engage children who are not naturally drawn to activities such as sports and who need to be coached differently in order to acquire certain skills. Visual directions, visual schedules, sensory considerations and flexibility in choice of activities will likely become a part of necessary accommodations so that camp programs can become naturally inclusive. I can say that in all of the conversations and sessions in which I participated in at Leaders Assembly last week, I was happy to see that the field of Jewish camping is moving toward a more inclusive society where all campers will be able to experience success.
The call came the other day from our son Jonah’s sleep-away summer camp. Registration was almost completed and we hadn’t signed him up yet. Was there a problem? I explained the delay was because our son was on the autism spectrum and there were additional details that had to be worked out – about how long he would be staying, about the availability of a shadow for that time period, about the cost. I was tempted to go on from there to my usual rant about how much more complicated things were when you’re dealing with a child with special needs, but I refrained. You see, after my last blog post called the “The What-if Moment,” about how I sometimes imagine how much easier our lives would be if my son did not have autism, my wife, Cynthia, strongly suggested I might want to be a little less of a grouch in future.
Her request reminded me of an interview I did some years ago with the novelist Richard Ford. He told me that his wife challenged him to write about a happy character for once. The result was Frank Bascombe, the narrator of Ford’s three wonderful but hardly cheery novels, The Sportswriter, Independence Day, and Lay of the Land. I’m guessing the Bascombe trilogy just left his wife shaking her head. “This guy is supposed to be happy?” she was undoubtedly thinking. Even so, Ford tried. And so will I.
In fact, after last month’s blog, I was reminded of an event I did in a library a few years ago. I was discussing my book about Jonah and during the Q&A, an older woman prefaced her question by saying she didn’t mean to be cruel, a sure sign she was going to be. I braced myself, but still her remarks stunned me. Do you ever wonder, she wanted to know, if you would have been better off if your son had not been born? For example, she added, your wife and you would have had more time for each other. Or maybe, she went on, you could have written more books. Like I said, I was stunned and speechless. Which is when the audience, bless them, came to the rescue. After the woman had gone on for a while longer, they basically shouted her down. I never really got to give her a good answer, but I thought about her question later and I wished I’d had the chance to respond.
I could have told her about the little things I’d miss – the fun I have making up crossword puzzles with Jonah, one of our new pastimes, or listening to music with him in the car. Or the way he chooses bedtime to conduct his own Q&A, asking his most profound and challenging questions like this recent one: “Daddy, why does there have to be yuck in real life?”
I could have also mentioned the lessons I’ve learned from Jonah – about being different, about working hard, about living in the moment. Even so, the cliché about my son making me a better person hasn’t turned out to be true. The fact is he’s a role model I will never quite live up to. He constantly amazes me with his imperviousness to embarrassment and the judgment of others, with the sheer delight he takes in everything from meeting a new person to dancing to eating a brownie. And, of course, there’s the big thing I would have missed if Jonah was not my son – fatherhood. I was over forty when Jonah was born and I never expected to have a family of my own. Before Cynthia and Jonah, I was lonely for a lot of my adult life. Since I became a husband and father, I can’t recall what loneliness feels like. There’s no way to say this without sounding utterly sappy – and without being utterly honest – but Jonah gave purpose to my life.
After the recent death of the actor and filmmaker Harold Ramis (Caddyshack, Groundhog Day), I came across a small scene he did in Judd Apatow’s movie Knocked Up. Ramis’s work was an early influence on Apatow and Apatow cast him as Seth Rogen’s father, letting Ramis improvise most of his dialogue. While Rogen, who has just gotten a woman he hardly knows pregnant, is practically pleading for his father’s scorn, Ramis can’t contain his delight. “You are the best thing that ever happened to me,” he eventually announces to his slacker son. “Now, I just feel bad for you,” Rogen says, giving the scene its punch line. But it’s Ramis’s unequivocal, automatic declaration that still stays with me. In fact, I wish I could meet that woman from the library again so I could tell her I feel the exact same way about my son.
Today is Share the Word to End the Word Day. The word “retard” that is.
It was once acceptable to use the words “mental retardation” as a clinical description for people who had below average IQ’s and had delays in adaptive skills. Nowadays, the r-word has a significantly negative connotation as it has often been used on playgrounds and in school hallways as a put-down. Even adults have used it, and still use it, in conversations when referring to something or someone as being an idiot or idiotic. Due to the incredible misuse of this word and the hurt that it causes, we now use “intellectual disability” as a replacement.
One of the purposes of today, is to ask people to pledge to remove the word from their vocabulary and to discourage others from using as well. The r-word must be replaced with RESPECT, respect for people of all abilities. It should also be replaced with what we call “people first language” (a child with autism, a person who is hard of hearing, a person who uses a wheelchair, my brother, my bunkmate, my friend). A person’s disability should never be what defines him or her; it is only a part of who that person is. As we continue to move in the direction of inclusion for children with disabilities at Jewish camp we will break down barriers and allow children and adults at camp to learn what makes us more alike than we are different and why the words that we choose to use even in jest, must always be respectful and must always put people first.
This post is part of our series dedicated to Jewish Disability Awareness Month.
Each year the most talented dancers and performers at Cedar Lake Camp would audition to compete for first place in a lip-syncing contest in their annual talent show. Kids would plan in the off season, and work all summer to be the best. Last year, however, the camp was challenged to change the show. Cedar Lake had recently welcomed the oldest campers from Round Lake Camp, another NJY camp for children with learning differences and social communication disorders, in a model of inclusion – and these new campers were encouraged to participate as well.
Some of the staff was afraid of what would happen. The new campers could not do the complex dance moves and choreography which was the hallmark of this event every summer. How would the other campers react to them on stage? Would the campers with disabilities feel successful and have a positive experience?
The group was placed in the middle of the show, amidst all of the other competing teams. One by one the acts performed – rock, pop, and hip hop. Each of the competing acts was amazing and received enthusiastic applause from their bunks and fellow campers. Behind the scenes the tension mounted awkwardly as the new group lined up to take the stage.
As these campers with disabilities walked up the stairs, their counselors cheered them on enthusiastically, and the 700 onlookers watched quietly. The group took their positions. What followed was magical.
Each camper made his moves in his own way. Each lip-synced with enthusiasm and joy. Some body motions were exaggerated. Some facial looks or ticks were clear. The rock anthem, “I want it that way” blared over the speakers and the crowd began to cheer. Teenagers who didn’t know how to feel when they took the stage couldn’t help but get swept up in the pride of the moment. By the end of the song, 700 campers roared to their feet as one. It was the only standing ovation of the day. Those campers were super stars.
No, they didn’t “win” first place. But yes, they won the day. And for that moment, everything we want in a camp came true for every single camper who was there.
This post is part of our series dedicated to Jewish Disability Awareness Month.
For me, it was in third grade.
I was in the bathroom and there was screaming that was not really words, but utterances, from behind another stall door. I could hear crying and knew something was not going well. I asked if someone needed help and there was just banging on the door. I was (and still am) a short person, so I crawled under the stall … and there was Sylvia.
Sylvia was in the self-contained special education classroom in my elementary school. In 1978, this was the way schools were set up and mainstream kids like me had very little interaction with kids in the self-contained classes. Sylvia was what we now would refer to as moderately developmentally delayed; she had some verbal skills but no real connections and no ability to make a sentence. There she was … just standing there … all ready to get out of the bathroom stall, but she had accidentally locked herself in. I unlocked it. We went to wash our hands and then it dawned on me that I should walk her back to her classroom to let the teacher know what had happened, since she was so distressed just moments earlier. I walked her to the classroom, told the teacher what happened and went to leave. As I did, Sylvia ran up and hugged me. I felt great about what had happened and moved on with my day.
Later that week, we were on the playground at recess and this boy, Marcus, came up and hugged me and told me that I was his friend now since I was Sylvia’s friend. Marcus was nearly six feet tall in fifth grade and also had developmental challenges, but he was able to communicate more effectively than Sylvia. Marcus just hugged me … every single day on the playground for that entire year. And every single day on the playground the year after, until he graduated and went to the junior high.
Maybe it was because I have some connection with people who want to be understood, maybe it was because I love to communicate with people in any way and felt like Sylvia must really need someone to help her to communicate, maybe it was because I liked it when I felt important by helping another person. Whatever the reason, there it was … my love for people with learning challenges and developmental differences. As clear as day, in third grade.
I continued this path as I grew older: I volunteered for kids with special needs in my town, befriended the kids in camp that no one else really wanted to hang out with, and even got a scholarship in senior year of high school for pursuing a career in special education. I went off to college and thought I would be a teacher, but once there decided that social work was more my style. All through college I coached five different sports in the Special Olympics (where one athlete asked me if I knew that, even though I did not have special needs, I was the worst player on our basketball team … and I was the coach), was head of the Students for Special Needs program, and did other volunteer work. I found an AMAZING Jewish camp to work at for children who had challenges, and found a mentor there that was inspiring. Ten years later, when he left, I got his job running the camp and continued to do so for about a decade. Now I am blessed to be working in another camp that is all about inclusion, and special needs inclusion is one part of this.
I would guess that I have worked with over a thousand young people and adults with special needs – all types of special needs – in a camping setting and I must tell you that it NEVER once dawned on me that this was a big deal. I mean, my sister loved to work with clothing and went into fashion, my brother loved to make deals and became an attorney, and I loved to help people so I went into social work with a focus on special needs. I know this will sound cliché, but I learn more from someone with challenges than they will ever learn from me. I get to be there for a family when they think no one is going to “get them” and their situation. I learn about acceptance of people’s strengths and weaknesses and that it is ok to have both. I gain an appreciation for things that are going well and a tolerance for things when they are not.
I know one thing for sure: no matter what I do for my entire career, the most important thing I ever did was crawl under a bathroom stall and unlock a door for my friend Sylvia.
This post is part of our series dedicated to Jewish Disability Awareness Month.
In the fall of 2013, the Foundation for Jewish Camp was matched with Devorah Lieberman, a young woman with Down Syndrome, through The Yachad/NJCD Vocational Services program. We are thrilled and excited to have Devorah working here. She has quickly become an asset to our organization and a part of our family.
At FJC we are committed to ensuring that everyone in our community has the opportunity to participate in Jewish life. We look forward to a bright future with Devorah as a colleague and enabling far more young Jews to participate in Jewish life including Jewish camp.
We wanted Devorah to have a voice in this series, so I’m pleased to share the piece she wrote below with you.
– Abby Knopp, Vice President, Program and Strategy at Foundation for Jewish Camp
Here at the Foundation for Jewish Camp I file and alphabetize charts and checks, I stuff envelopes and I stamp envelopes using a machine. What I love about working at FJC is seeing different co-workers and talking to them at lunch. I have a really nice job coach that helps me do my job correctly, makes sure I understand what I am doing and that I am focused. I think it is important for me to work because I am mature, capable, responsible and efficient. I like that work keeps me busy and allows me to interact with other people. I am happy I work here and I think FJC is an important organization because I think camp is important. I have been going to Camp Morasha since I was 16 years old and have really enjoyed it. I was a camper for 4 years and a staff for 9 years. I really enjoy going to camp every summer. As a camper, I enjoyed doing activities like swimming, climbing walls and baking. As a staff member, I enjoyed working in the baking room because I could eat the stuff that I make, the art room because I am an artist like my sister and I love doing the art projects and I enjoyed working in the office doing data entry. This summer I am starting a new camp called Camp Mesorah with Yachad and I am very excited and looking forward to going.
Nostalgia about summer traditions notwithstanding, Jewish camps have changed dramatically from a generation ago.
Camp’s value for Jewish education and identity-building is now a major focus of communal attention. Major Jewish foundations, federations and organizations are investing heavily in the sector.
Many camps have become more intentional about incorporating Jewish learning, Shabbat and Israel into their programming. They’ve also evolved to meet families’ changing expectations and demands: offering a wider range of choices of all kinds (from food to activity to session length); providing more frequent updates and communications to parents; accommodating numerous medical requirements and allergies;and placing greater emphasis on safety and security.
At the same time, the Jewish camping field is becoming more professionalized. The job of camp director has been shifting from a seasonal gig to year-round career, and counselors are receiving more intensive training.
With all this change in the Jewish camp world, here are 10 specific trends we have noticed:
1) Shorter sessions: Once upon a time, summer camp meant the entire summer, with the majority of campers attending for seven, eight or even 10 weeks. Now it is the rare child or teen who spends the full summer at camp (or at one camp), and most programs offer multiple sessions, ranging in length from just six days to seven weeks. “Our three-week session has always sold out more quickly than the four-week, and our new two-week session has been a quick hit as well,” said Vivian Stadlin, co-director of Eden Village Camp in Putnam Valley, N.Y.
2) Specialized programs: Whether a child’s passion is sports, the environment, outdoor adventure or science and technology, there’s a Jewish camp for that. An incubator under the auspices of the Foundation for Jewish Camp spurred the creation of five specialty camps in 2010 (including Eden Village, which is focused on the environment) and another four that will open this summer. The idea is to attract kids who might not otherwise consider a Jewish camp and to show them they can combine their passion with Judaism. Increasingly, established general-interest Jewish camps are adding specialty tracks and electives. For example, the New Jersey Y camps offer a science program and various sports programs, while Ramah in the Poconos has run basketball clinics and a tennis academy.
3) Healthier food: Serving healthy, locally sourced food is a part of the mission of some specialty camps like the new health-and-wellness-focused Camp Zeke and was a component of Ramah Outdoor Adventure from its beginnings in 2010. In addition, many established Jewish camps have been redoing their menus to make them more nutritious and environmentally friendly: adding salad bars, replacing “bug juice” with water, offering more vegetarian fare and even planting their own organic vegetable gardens.
4) More affordable options: The Foundation for Jewish Camp recently introduced a new program called BunkConnect that enables first-time campers from middle- and lower-income families to search for a variety of discounted Jewish summer camp options. While BunkConnect is currently only available in the Northeast, New England and Mid-Atlantic regions of the United States, the foundation hopes to expand it in future years. In addition, most Jewish overnight camps offer financial aid and the One Happy Camper Program, initiated in 2006, offers grants for all first-time campers regardless of need. So far 50,000 children have received One Happy Camper grants.
5) Broadening definition of camp: While rural settings and rustic accommodations are still the norm, two specialty camps — the Union for Reform Judaism’s Six Points Sports Academy and Six Points Science & Technology — are located on boarding school campuses, and another, the 92nd Street Y’s Passport NYC, is in the middle of Manhattan. Passport NYC, in which participants do internships and live in air-conditioned dorms, and Six Points Science blur the boundary between “camp” and “summer program,” while programs like USY on Wheels and Adamah Adventures, which operate under the Foundation for Jewish Camp’s umbrella, blur the boundary between “camp” and “teen travel.”
Read the rest of this feature on JTA.