After my son, Jonah, was born, our family – Jonah, my wife, Cynthia, and I – became a self-sufficient little island. We were busy; we were also besotted with each other. Our motto, if we’d had one, could have been lifted straight from the classic swashbuckling novel, The Three Musketeers. That’s right: “One for all and all for one.” And while we were lucky enough to have lots of support and help in Jonah’s first few years from immediate family – Cynthia’s parents and my sisters, in particular – we were, for the most part, on our own and liked it that way. Then, just before Jonah turned four, he was diagnosed with autism and our little island was transformed, practically overnight, into a complicated and crowded place, a place we would soon realize we could no longer manage on our own.
Any parent of a child with autism knows the feeling: suddenly, you’re at the mercy of a growing list of so-called experts – psychiatrists, psychologists, social workers, educators, speech therapists, occupational therapists, you name it. There are also books to read, organizations to join, bloggers to follow. All of this to say that the notion that it takes a village to raise a child isn’t always as reassuring as it sounds. Eventually, though, you grow used to it. You are now a part of the autism village. Eventually, you also come to appreciate, often treasure, those individuals in your child’s life who are making things easier for him and, by extension, you. Mike Picciuto is such a person. We met him last year when he became the assistant teacher in the class Jonah attended at Summit, a special needs school in Montreal. Actually, before we met him, we’d already heard a lot about him, from Jonah, who talked about this “Mike-fellow” practically non-stop. Parents of children with special needs learn to be pretty good judges of those rare people who can connect with their kids and it was obvious, from the start, that Mike and Jonah were a good fit. We also got lucky since Mike had just the kind of skill-set we were looking for, in addition to patience, kindness and firmness, he’s a pretty good musician and, with him, we found the guitar teacher for Jonah we had been having some trouble finding. The two play together one hour a week, but Jonah is constantly calling Mike on the phone for his practice instructions. In fact, the calls are probably a little too constant, but Mike has yet to complain.
We also found, in Mike, a shadow who could attend sleep-away camp with Jonah. Cynthia and I were understandably nervous when we took Jonah to the bus last summer to send him off for what would be his first real, extended time away from home and I doubt we could have done it if it weren’t for the fact that Mike was going too. It’s probably important to add, here, that sending a shadow to a sleep-away camp with your child can be prohibitively expensive. You have to pay his salary as well as the camp tuition.* Indeed, it is one of those areas where help from “the autism village” might also come in handy. Cost notwithstanding, though, Mike made it possible for Jonah to have a great time at the Camp B’nai Brith near our home in Montreal. And when Cynthia and I picked Mike and Jonah up after the week was over, it was also clear Mike had a great time, too. He was quickly accepted into the camp’s structure and activities and, to hear him tell it, he learned an awful lot – especially about being Jewish.
A Canadian-Italian and a Catholic, Mike admitted to me he wasn’t sure what to expect from a Jewish summer camp, but, in the end, he added, it turned out to be “one of the most pleasurable experiences I’ve ever had outside my comfort zone.” He had a crash course in Jewish traditions and rituals, everything from the Wailing Wall – “I’d never even heard of it before” – to Shabbat dinner. “There was a rabbi at CBB who I asked an awful lot of questions. He never hesitated to answer me. I learned something new every day,” Mike told me. “And that one Friday night, the Shabbat dinner, I spent at CBB with Jonah was a real education for me. It was a reminder of how important it is to hold onto your heritage. And not just by saying you have to do this or that, but by explaining all the rituals and all the reasons for doing them. I also liked how much Jonah enjoyed that evening. We sang a lot on that night and I was glad I could be there to help him be a really important part of the Jewish camp experience.”
*Please note, each camp has their own policies and this may not be true for every camp.
For many summers, Camp Ramah in Wisconsin has had a robust theater program where, like many other Ramah camps, campers mount productions of Broadway musicals in fully translated Hebrew. The Ramah camps also happen to have a unique program called the Tikvah program, which provides opportunities for campers with intellectual, physical, and/or developmental disabilities to attend Jewish summer camp. In the summer of 2002, counselors at Ramah Wisconsin decided to try creating a platform for Tikvah campers to perform in their own, self-written Jewish play for the camp community. There were many in the camp who were nervous about this idea for several good reasons. But the green light was given and a project was born.
The idea was to create a play based on Breishit, the creation story in the book of Genesis. There were 12 campers.The campers were split into six groups with each group consisting of two Tikvah campers and one counselor. Each group focused on a different day of creation. And each group was tasked with not only writing a skit, but creating a visual image of their day (a sun, a tree, etc.). The performance itself was presented in a low-key atmosphere as a ‘lunch theater’ in the auditorium at camp. Just the oldest campers were invited to the performance and as they came in to the auditorium, everyone grabbed plates of spaghetti from the buffet and sat down to eat their dinner and watch some theater. One by one, each group got up to perform their scene, and then placed their visual image on the back wall of the stage and then sat back down to continue eating. It felt like a casual series of cute performances. And then for the last day of creation (Shabbat – God’s day of rest), all the campers came back on stage and fell asleep. The show was a huge success! Everyone talked about it for days and the campers felt so proud of themselves.
The next summer, a new idea was hatched. The counselors decided that for that summer’s Tikvah Lunch Theater, the rehearsal process would be opened up to several camper volunteers who wanted to work with the Tikvah campers to help them create their show. The only problem? 15 campers listed Tikvah Lunch Theater as their first choice activity. There were only 15 campers in all of Tikvah! So what did they do? They let them all in, and 30 campers performed in that year’s Tikvah Lunch Theater. No counselors had to help write the scripts or perform. The campers did it all themselves. It was a show about superheroes in the Torah (Joseph, Miriam, etc.). But it could have been a show about superheroes at camp. That’s what it felt like.
Fast forward to 2012: the 11th annual Tikvah Lunch Theater had a standing room only crowd. It has become a marquee event in the camp calendar. What is most exciting to me is that the staff members who were working on it this past summer had no idea that there hadn’t always been such a program as the “TLT.” They just assumed it was something that always existed at camp. This was culture change at its best. This is why people like me choose to work at Jewish summer camp. So we can watch campers and staff members become superheroes before our eyes.
Joel Yanofsky is the author of Bad Animals: A Father’s Accidental Education in Autism.
We figured we were all set. The fellow at the music store near our house assured my wife Cynthia that someone on staff could give my then 12-year-old son, Jonah, guitar lessons. But when she added that Jonah has special needs, he quickly retracted the offer. “We don’t do that,” he said. There was nothing particularly new about this response. Jonah has been disinvited to more than his fair share of parties and had play dates cancelled at the last minute with lame excuses. It doesn’t take long, as the parent of a child with special needs, autism in Jonah’s case, to internalize the word “no.” You’re continually coming to terms with the things your child will probably miss out on. Things other parents take for granted: like finding your child a guitar teacher.Meanwhile, that “no” inside you thickens like a callus. Still, when the rejection comes from outside, especially from someone who doesn’t know your child, the hurt is mixed with an element of surprise. The sting feels fresh all over again.
Of course, the word “yes,” when you do hear it, also comes as a surprise and is all the more gratifying for it. We’d thought about sending Jonah to summer sleep-away camp for a few years, but with no real success. Then, last year, we met Josh Pepin, the director of the Montreal chapter of Camp B’nai Brith and that all changed. Jonah spent a week at the CBB sleep-away camp, an hour’s drive north of Montreal, and the experience was so good, he intends to return this summer for two weeks.
To hear Pepin tell it, his accepting attitude is just part of the camp’s longstanding tradition of diversity, of integrating all kinds of kids. “If you look at the mission of CBB, our special needs program fits it perfectly,” says Pepin, a big, gregarious man in his thirties, who you can’t imagine saying no to anyone, “Our idea is that kids, no matter their background, or where they come from, what language they speak, what socioeconomic background they come from or how they function, deserve a summer camping experience. I’m no professional in the special needs milieu, but I know we have to keep integrating special needs kids. Not just for them but for all our campers and our staff. Kids like Jonah are such a beautiful part of our camp.”
Pepin never went to sleep away camp himself, not as a camper – “I’m a mama’s boy,” he confesses – but when he was 18, he lost a bet with a friend and ended up as a counselor at CBB. He continued to work there summers for a decade, met his best friends, and also his wife there. After taking on a few other jobs in Montreal’s Jewish community, he came back to CBB as director in 2010. Along with the emphasis on diversity at CBB, Jewish identity is paramount for Pepin. “That’s why we exist,” Pepin says, “to offer kids opportunities that they may not otherwise have if they don’t go to Jewish day schools or belong to a synagogue. As camp director, I consider myself an informal educator. And I have an opportunity, here, to shape young Jewish minds and identities.”
He also gets the chance to say “yes” a lot more than “no.” For which my family is grateful.
Incidentally, we found a guitar teacher for Jonah. He also turned out to be Jonah’s shadow at CBB last summer. I’ll be writing more about him and about the importance of shadows in an upcoming blog.
Rabbi Isaac Saposnik is the director of Camp JRF in South Sterling, PA.
Two summers ago, I met David for the first time. Before he arrived in camp, we spoke with his parents about his Autism, how it might impact his experience at camp, and what their goals were for him – both during the summer and beyond. They were incredibly open and realistic, and we were upfront about what we could offer. And while we all hoped for the best, I must admit that I entered the summer with a bit of trepidation, worried that we might not be able to live up to all of our expectations.
Boy, was I in for a surprise.
David jumped head first into the camp experience. He participated in all of the activities, loved the food, and always had a smile on his face. He shared his love of basketball and brought us the tradition of chocolate breakfast (with thanks to our friends at Camp JCA Shalom). A week or so into the session, I showed up in our teatron (theater) to hear David talk with fifty of his peers – our ninth and tenth graders – about autism. We knew his mitzvah project had been on the topic and that he had spoken about it in other places; he came into the summer wanting to share it with us.
Our campers are incredibly thoughtful, kind, and amazingly aware that everyone is different and has their own gifts to bring to the community. Even so, surrounded by a group of teens, I was worried that, after a great first week, David’s positive experience could end when he stepped up to the microphone. And then he began to speak … and you could feel the teens’ excitement. There was laughter at the right times, good and thoughtful questions, and, when he finished speaking, thunderous applause. As everyone got up to leave, I watched David giving high fives, smiles, and huge bear hugs to his friends.
Even David would tell you that kids with autism often have a hard time making friends. But in just three short weeks, he had made incredible friends. He kept in touch with them all year. Last summer, he counted down the minutes until his best friend, who is a year older than him, returned to camp from his trip to Israel. And he got a letter from a friend who had other plans for the summer and said the thing he would miss most about camp was David.
Jewish camp – with values like derekh eretz (character) and kehillah (community) – is powerful. Surrounded by their peers, kids build relationships that they couldn’t imagine at home. The power of camp is that it allows kids to truly become their best selves, no matter how hard that might seem the rest of the year. After this past summer, David’s mom sent us a note: “We are so happy that David has a place he can go and feel comfortable, make friends while being himself – Camp JRF is his home away from home. We believe his camp experience is preparing him in so many ways and we are grateful beyond words to you and your staff for giving him the opportunity.”
To tell you the truth, I’m grateful to her for giving us the opportunity. Learning from, laughing with, and just knowing David is truly a blessing. We are lucky to have him as part of our camp family.
Joel Yanofsky is a writer and author of “Bad Animals: A Father’s Accidental Education in Autism.”
The letter my son, Jonah, sent us from sleep-away camp last summer was pretty much what you’d expect from any kid getting used to his first few days and nights away from home. He told us about passing his swimming test and about the trouble he got into when he didn’t pay attention. He also complained about some of the meals. “The food here is good but it’s not great. Please take me to East Side Mario’s when I get back because I don’t like the pasta here,” he wrote. “I had the salad instead.”
Of course, I recognize that this letter, including the fact that it has been proudly displayed on our refrigerator since August, couldn’t be more of a cliché. But then, my wife, Cynthia, and I live for clichés. We cherish the mundane, the average, the ordinary, all the things other parents take for granted. That’s because our son, who is 14 now, has autism.
He was diagnosed when he was almost four, labeled high-functioning. Over the last decade, we’ve learned to accept some of his differences and appreciate others. It’s what we have come to call The New Normal. Still, sometimes, it’s The Plain Old Normal we crave: like Jonah learning to swing on monkey bars a few years ago or celebrating his bar mitzvah last year.
The decision to send him to sleep-away camp for a week was a big step in The Plain Old Normal’s direction. Cynthia argued for it; I had my doubts. In part, because I never went to camp myself. My parents moved out of the city to the suburbs when I was five and they were convinced I was as close to nature there as I needed to be. Mostly, though, I was concerned that sleep-away camp was an environment where Jonah would not fit in, one that would spotlight his difficulties with being independent and making friends.
Fortunately, Cynthia, a camper all through her youth, won the argument. She saw Jonah’s week at Camp B’nai Brith, located in Lantier, Quebec, an hour north of Montreal, as an ordinary rite of passage. And while we did make some special accommodations with the cooperation of Camp B’nai Brith – like having a shadow accompany Jonah or having him stay for only a week – Jonah was, in the end, just another kid in a bunk full of kids missing home and having fun. He participated in the same things the other kids did – from Shabbat dinner to getting up, for a second or two, on water skis. He also turned out to be a popular bunkmate, celebrated for his skill at making fun of his counselors. If it took him a while to adjust to the food, that was, we realized, to be expected. If he now insists on going back to Camp B’nai Brith for two weeks this summer, well, that’s what I’d call perfectly normal.