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.
This post is part of our series dedicated to Jewish Disability Awareness Month.
When I was seven years old, I started going to a Jewish overnight camp on the West Coast. I honestly think that had to be the worst experience of my life, but not for the reason you may be thinking. The only reason I didn’t like it was the fact that I have autism. Bottom line, I didn’t fit in. Too bad my family decided we should all go for the next two years. (My mom, who is a rabbi, served on faculty there. Even though they tried their best and my mom was up at camp, things were still really terrible.) However, after moving to Pennsylvania, my family and I learned that there were Jewish camps for kids on the autistic spectrum. My family decided to send me to Round Lake Camp which was also a Jewish sleep-away camp. After going for my first year, each summer was all about camp.
Now, if you have a brother, sister, or child who has autism, you probably know that new experiences cause a lot of anxiety. So, for example, if the simplest bee is scary to them, they might be having a nervous break-down the entire car ride wondering if they’ll be tons of bees at camp. In my case, on the drive up with my dad, he calmed me down by telling me the three main purposes of camp and the importance of each. The first important part of going to a Jewish camp would be that you meet new people and make some friends. Considering my lack of friends, this was a big plus. Also, because this is a Jewish camp, you won’t be the minority anymore which also means that you get to do Jewish activities that aren’t available anywhere else such as Israeli dancing. One of the things I did enjoy at the west coast camp was Israeli dancing and it was something I really missed.
The next big purpose is getting to try new things. This would include new foods such as tomato soup, new activities such as high ropes, and water activities such as the huge water slide. Out of all those things, my favorite wouldn’t be an activity, but the fact that I get to stay in a cabin with all my “camp buddies”. At my first camp, however, because I didn’t fit in, I didn’t feel comfortable in my bunk. While at Round Lake, everyone in my bunk accepted me and helped me when I was feeling sad.
After my first year, Round Lake was combined with another camp called Cedar Lake. It was also a Jewish camp, but was not for kids on the spectrum. That wasn’t really an issue because we really didn’t come into contact with the Cedar Lake kids that often. Except for Color Wars which is a big competition where both camps were combined and split into four groups. After being split, you compete in different activities. Almost every camp does this activity and I never really liked it.
The last and most important purpose of going to a Jewish camp is what my dad told me before my first year at Round Lake. That would be the ability to learn more about yourself. In other words, that means finding new experiences and finding what you are good at such as sports and science. I learned that I am good at a game called Ga Ga. It’s a game played in an octagonal court with a rubber bouncy ball. The objective is to use your fist or open hand to hit the ball towards the other players (knees or below). If the ball does hit them (in the knees or below), they are out.
All in all, going to a Jewish camp is a great experience because of the friends you’ll make, the new experiences you’ll have, and the memories you will have created. As we say at Cedar Lake/Round Lake, this is “A Home Away from Home.”
I must confess. When I first started working as a counselor in the Tikvah Program at Camp Ramah in New England in 1984, I couldn’t understand how parents of children with disabilities could send their children away for eight weeks each summer. Now, after working in the field of disabilities camping for more than 20 years, I have a hard time understanding why parents of children with disabilities won’t seriously consider sending their children to an overnight Jewish summer camp. Of course I understand that it is scary, often far from home, and that the sessions feel “long.” I understand that children with disabilities often can’t effectively communicate their needs, or advocate for themselves. And I understand just how hard it is for parents to be out of contact for a month or two. So why do it? Here are 5 reasons.
1. Camp offers fun, stimulating activities: Simply put, thousands of Jewish children go to camp each summer—and they have a great time. There is no way any parent can offer that level of programming and stimulation in their backyard or apartment. Camping offers children daily doses of the arts, sports, dance, singing, and swimming—not to mention exposure to such electives as nature, cooking, drama (plays in Hebrew!), sailing, woodworking, the climbing wall and more—all before lunch!
2. Camp offers friends and role modeling: If the camp program is part of a larger camp, your child will spend hours a day interacting with a diverse group of children of all ages—both neurotypical and campers with disabilities. What better way to practice and improve social interaction, speech and language skills and more! Camp is a 24/7 social environment with chances to try out various social behaviors—and receive instant feedback. Through these interactions, campers are scaffolded and grow in so many ways.
3. Camp is an all-encompassing Jewish living environment: Campers sing Jewish songs, dance Jewish dances, experience Shabbat, pray through song and movement and interact with a diverse group of Israelis. And Jewish values are alive in Jewish summer camps! Families return to their local synagogues asking if they can incorporate these elements in to their worship services and programming. And campers and staff members return home with understanding and sensitivity toward people with disabilities. And they are life-long ambassadors!
4. Camp is the next step toward independence: Separating is never easy for children and parents. But children almost always adjust to the camp routine quickly. Campers learn to make their beds, keep their shelves neat, sweep, clean the bathroom, and more. They learn to become even more independent with skills of daily living. And they often try lots of new foods in the dining room—simply because they are on the table! Parents are often amazed with what their children can do when they return from camp.The biggest post camp challenge for parents? Continuing to foster this new found independence!
5. Camp is well-deserved and needed respite for parents! One thing I did not understand that first summer as a teenage counselor was that parents work very hard. Parenting a child with a disability is not easy. Parents need and deserve a chance to be together as a couple—to sip wine, to go to the beach, or even go to Europe! And they absolutely deserve and need a chance to spend time with their neuroptypical children who also need time and attention.
As we mark Jewish Disabilities Awareness Month in February, we note that camp starts in four months! Space is filling up fast at Jewish camps all across the country. Decide today to reach out to a camp director and begin a conversation about the possibility of your child attending camp. They and you will grow a great deal from the experience!
Find available Jewish camp options for children with disabilities here.