Last August, when my son, Jonah, returned from sleepaway camp with a sunburn, an array of nasty-looking mosquito bites, and a desire to water ski again (though this time for longer than a nanosecond), he also had a deepening connection to ritual. At camp, he’d taken to the morning flag-raising ceremonies, the campfire singalongs, as well as the Friday evening Shabbat dinners. I’m guessing that’s what inspired him to insist, this fall, on fasting on Yom Kippur; it was a carryover from his summer of Jewish education. His effort not to eat was, for a 14-year-old with an enormous appetite, remarkable: he made it until lunch.
But then Jonah, who was diagnosed with autism a little more than a decade ago, has always had an affinity for ritual. In fact, one of the early signs of his autism, for me at least, was his habit of lining up his toys single-file from one end of his bedroom to the other. He would have done this for hours if we let him. He could always tell, too, when I switched one toy’s place with another in the line. And, under no circumstances would he tolerate the chaos of double-file or a semi-circle. Eventually, it became clear that Jonah was a lot less interested in engaging in imaginative play with his tiny trucks and alphabet blocks and stuffed animals than he was in giving them an orderly world in which to exist. Which is, come to think of it, the whole point of ritual.
A point, I confess, I’m missing these days. After all, this was the year I deliberately passed on the apple slices dipped in honey on offer at my mother-in-law’s Rosh Hashanah celebration. It was also the first year, since my Bar Mitzvah, that I did not fast on Yom Kippur. My reasons were simple and admittedly childish: I was angry with God. The reason for that was simple, too. My beloved sister died this past August after contracting a mysterious illness and suffering for an excruciating six weeks in the hospital (Jonah came home from camp the day of her funeral) and I was determined to blame God. Childish, like I said, but once my initial anger subsided I had no need to see the world as an orderly place. I’d experienced this kind of thing before, decades earlier, when my mother and father died within two years of each other. When my sister died, I discovered the instinct to be vindictive was – like riding a bicycle – impossible to forget.
But now, it’s Hanukkah and Jonah is all in for the holiday, for the gifts, the candle-lighting, the dreidel spinning and the latkes; and I am doing my best to play along. Still, Hanukkah may be a good way for me to get back on the ritual bandwagon. As Jewish holidays go, it’s innocuous and undemanding. The emphasis is mainly on fun; the mood mainly lighthearted. No great physical, emotional or intellectual demands are going to be made on me. I also can’t help remembering that my late sister loved Hanukkah. She made mouth-watering latkes and, along with my other sister, devoted herself to finding and meticulously wrapping eight special presents for Jonah. It was just one of the many small ways she demonstrated her love for her nephew and also her acceptance of him, which was, from the moment he was born as well as the moment we learned he had autism, absolute and unconditional. So, for the sake of my son and my sister, I’ll put my holiday boycott on hold. The truth is I’ll be doing it for my own sake, too. And while I recognize it’s a lot to ask of any ritual to make the world seem less random, less cruel, it’s probably not the worst place to start.
When my 14-year-old son Jonah returned from sleep away camp this past summer it was with some surprising new interests. Which is to be expected; it’s also predictable that not all of the surprises would be pleasant ones. I’m referring to some of the songs he has been singing since he got off the bus, specifically the songs of Alecia Beth Moore, the bestselling recording artist better known as Pink. And while I’d like to quote some of her colorful lyrics, here, in this family blog, they are, unfortunately, not fit for a family blog.
Initially, this upset me. For most parents, the dilemma would be a difficult but straightforward one. They could forbid their child to listen to music they deemed in questionable taste and suffer the inevitable consequences. Their child would rebel and be more determined than ever to listen. Jonah, however, is not rebellious. In part, this is a consequence of his having autism. For better or worse, he is more likely to trust us to know what is good for him. Here’s an example of what I mean: everyone in our family is a big fan of the Canadian singer-songwriter Hawksley Workman, whose lyrics will occasionally feature so-called bad words. One song, in particular, on a CD called Between the Beautifuls that Jonah and I listened to repeatedly in the car, was objectionable, so a few years ago I informed him that he wouldn’t be allowed to play the offending track, number seven, until he was a teenager. Whenever the CD was on, he would dutifully skip from number six to number eight. But the day he turned 13, he headed straight for track seven.
Of course, a part of me knows this generational divide is not only a cliché, it’s one of the main reasons we sent Jonah to sleep away camp in the first place. The idea was for him to spend more time socializing with kids his own age and for him to get a closer look at the pop culture world in which they live, something his autism often prevents him from doing. When it comes to music, though, he’s just about caught up to his peers. But then I like to think his musical taste has always been sophisticated. I’ve been imposing my baby boomer listening habits on him for years; my wife doing the same with her affinity for folk music. He has always been able to love both. Aside from the obvious choices – The Beatles and Bob Dylan – the range can be dizzying: from Tom Waits to Pete Seeger, Steely Dan to Joan Baez.
And, now, even an old fogey like me knows, even revels in the fact that Jonah is developing his own likes and dislikes. So when he got back from camp, he and I went out and bought Pink’s latest CD, The Truth about Love. I was right by the way: it’s filthy. I was also wrong: it’s fantastic. Pink uses bad language the way any clever lyricist or writer would: to great effect. Again, I can’t quote from a song like “True Love” but her assessment in it of how the people we love invariably drive us crazy is both crude and spot on. There is also an anthemic quality to some of her songs that speaks specifically to human frailty. “Try” and “Just One Reason” are good examples. But my favorite rousing Pink song is on an earlier CD. It’s called “Raise Your Glass” and serves as a touching and empowering tribute to kids who are different, kids like Jonah: “So raise your glass if you are wrong/In all the right ways, all my underdogs…”
What can I say? I’m not only glad camp introduced Pink to Jonah, but Jonah introduced Pink to me.
It’s only been a month and a half since my son Jonah returned from sleep-away camp and I’m already feeling nostalgic for that brief August interlude when he was on his own and my wife Cynthia and I were on our own. Not just because it was a break for us from the rigors of parenting a child with autism, but it was a break for Jonah from the rigors of being parented by the parents of a child with autism. We can make for a tense trio at times. It’s not just that we all worry about one another; it’s that we all feel the weight of being worried about. In any case, Jonah thoroughly enjoyed his eleven summer days – and ten nights – away as did his mother and I. We’re all especially grateful for how wholeheartedly Jonah was accepted into his summer camp community.
But the summer is over. Fall is here and with it comes a whole new set of worries. After thoroughly enjoying camp, Jonah, who’s 14, is back at school and enjoying it a lot less. Jonah attends a special needs school, here, in Montreal and for most of the last month we have been receiving reports expressing concern about some of the problems he’s having re-adjusting to the routines and pressures of the day. What has followed is what seems like a daily series of phone calls, emails, and texts back and forth and, along with it, an escalation of worrying.
Then, the other day, Cynthia and I arranged to meet with Jonah’s teacher, his psychologist, his social worker, his behavioral technician, the school’s educational consultant, and the principal. A lot of good will and hard work went into this get-together. There were reassurances the school would keep trying to figure out what was going wrong and what could be done to address making Jonah feel better about his environment. There was also a willingness to hear whatever feedback my wife and I had to offer about what might work best with Jonah. Even so, I confess I was only listening half the time. The rest of the time I was thinking about how much I hated these meetings, all these meeting we’ve had over the years to try to help Jonah fit in, be accepted, flourish. It’s one of the things parents of so-called neurotypical children don’t always understand about being the parent of a child with autism: it seems like you can never make a decision or solve a problem without consulting a dismaying array of experts, often experts who, when it comes to the mysteries of autism, are just guessing. It’s no wonder there are times you don’t feel like a family so much as a lab experiment.
I don’t know about Cynthia but I always end up feeling the same way at these meetings: like I’m the one back in school, experiencing that familiar back to school dread, the troublemaker about to be called on the carpet for whatever it is I’ve done wrong.
What have I done wrong? And what should I have done differently? When you are the child of a parent with autism or any special needs you spend a lot of time asking yourself some variation and combination of these questions. It’s no wonder I find myself missing those relatively worry-free days Jonah spent at camp. This October, they seem so long ago.
A few weeks ago, in a parking lot in Montreal, with hip-hop music blaring from oversized speakers, and lanes delineated for a fleet of buses to pull into, I found myself waiting with 200 or so other parents for my son Jonah to return from sleep-away camp. It was hardly a Norman Rockwell painting, but there was still something timeless about the feelings of anticipation and excitement that were as palpable as the humidity in the August air. Jonah had only been away 10 days but it felt longer. Of course, if I’m being honest, it also felt like it went too fast. It’s always a little surprising how quickly my wife and I are able to adapt to life on our own. Still, we missed the kid and, like everyone else in the parking lot, we could hardly wait for his bus – Senior Boys – to finally arrive.
But we were also, we knew, different from other parents. Jonah, who’s 14, is on the autism spectrum and while we were hopeful he had a good time, first of all, we were even more hopeful he’d gained some new measure of independence at camp. We care a lot less about whether he learned to water ski then whether he learned how to do the simplest things, things other parents take for granted – like learn to eat a new food or maybe just hold a five-minute conversation with a bunkmate. And while most parents with teenagers are trying to find ways to keep their kids closer, hoping, in vain, that they won’t change too much, we’re continually hoping Jonah will come home after being free of our inevitable worrying about him and start pushing us away. We hope he’ll begin to understand it’s his job to change.
In her recent memoir, Next Stop: An Autistic Son Grows Up, Washington D.C. journalist Glen Finland writes about her heroic and poignant efforts to help David, her 21-year-old son on the spectrum, learn how to navigate the city’s subway system and, much more important, learn to be an individual, an adult. But, of course, it’s Finland who has to learn, while writing the memoir, how to be on her own: “After decades of being my intellectually disabled son’s advocate, how could I just shut off my dependency on his dependency on me?”
It was a question I was asking myself as the Senior Boys bus finally arrived in the parking lot and Jonah exited a little shyly. He had a deep suntan and an array of mosquito bites on his arms, legs, and neck. He had a growth spurt this summer and was already taller than me by the time he left for camp, but he seemed to tower over me now. He had the beginnings of a mustache before he left but I could also see whiskers on his chin and a significant accumulation of pimples on his forehead. Jonah can be hard to get information out of at the best of times, but he seemed quieter than usual. And, maybe it was my imagination, but it also seemed like the things he wasn’t telling us were not just things he couldn’t be bothered to tell us, but things he decided not to tell us. He was acting, in other words, just like a teenager.
My wife caught up to the camp director and Jonah’s shadow and they told her that Jonah had a fantastic time. He didn’t make close friends, but the kids at the camp liked him and accepted him on his own terms. He was, my wife was assured, independent, pretty much. Oh yeah, he also tried lasagna and water-skied. Jonah wanted to get home for lunch – definitely not lasagna, we assured him – so we didn’t linger. But then just as my wife and I were driving out of the parking lot, my son realized he did have something important he wanted to tell us, after all. A decision I’m guessing he’d reached on the bus and on his own. “Next year,” he said, “I’m going to camp for the whole summer.”
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.