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.
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.”
February is Jewish Disability Awareness Month (JDAM), which brings a topic that is very important to us at the Foundation for Jewish Camp to the forefront of conversations all over the Jewish community. JDAM is “a unified initiative to raise awareness and support efforts to foster inclusion of people with disabilities and their families in Jewish communities worldwide.” To further the effort, we are running a series dedicated to discussing disabilities at Jewish camp this month.
Kicking off the series is a round-up of some of the most powerful posts by Joel Yanofsky, one of our resident bloggers and father to Jonah, a great teenager and camper on the autism spectrum.
Stay tuned for posts by camp directors, experts in the field, former campers, and more.
There’s no point pretending this blog post is going to be about camp or summer, especially summer. Montreal in February is no picnic. In the grip of the latest polar vortex, I can’t even remember what a picnic is. This may explain why I sometimes wonder what if I only lived in a warmer climate; if my Russian-born grandparents, who had the foresight to flee the pogroms, also had the foresight to stowaway in steerage until their ship made it to, I don’t know, Miami Beach. In any case, they didn’t and now I stowaway in my house all winter. Even our dog, fluffy as she is, would rather stay in her crate until spring. Like the dog, I’m resigned to enjoying the great indoors. During the winter months, one of those indoor activities is party going. When they’re cold, Montrealers are a particularly sociable bunch; even anti-social types like me can’t duck every invitation.
But parties have their own hazards. At a recent get-together, I found myself making small talk with a woman I’d just met. Inevitably, we got around to discussing our children and discovered we both have fifteen-year-olds. She began describing her son’s efforts to find a good CEGEP – CEGEPs, here, are the equivalent of U.S. junior colleges – once he graduated from high school. I knew, of course, where the conversation was headed and braced myself.
“Your son must be thinking about CEGEP, too,” she said.
“Jonah is on the autism spectrum,” I said. “He attends a special needs school. College isn’t likely to be in the picture.”
A long silence followed; it seemed long anyway. There wasn’t much for her to say. She hadn’t said anything wrong. If anything, I felt a little bad for her. I’ve come to terms with the fact my son has autism, but that doesn’t mean I’m not brought up short, on occasion – reminded all of a sudden that your life, his life is going to be very different from the lives of other people. It’s what I call the “what-if-moment” – the moment you can’t help wondering what if your son didn’t have autism. What would his life, your life be like?
Such questions are at the heart of Bad Animals: A Father’s Accidental Education in Autism, the memoir I wrote a couple of years ago about my family. In some ways, writing the book brought me a small measure of acceptance. I don’t sweat the big stuff anymore. Wondering what it would be like if Jonah were headed for college makes as much sense as wondering what it would be like if I were heading out the door with my surfboard.
Still, the small stuff lingers. It would be nice, for instance, if Jonah and I shared an interest in sports, in particular watching sports on TV. Yes, I wish I could instill in my son my talent for being a couch potato – especially around now, Super Bowl time.
The good news is the “what-if” moments don’t linger. It helps, too, that I came up with some trick plays to keep Jonah in front of the big game a little longer than usual this year. Just before kickoff, I made a super-size bowl of popcorn and placed it strategically beside me on the couch. My thinking was: if I could just keep Jonah there until half-time, I knew he’d want to stay for the half-time show. Jonah and I do share a love of music as well as an uncanny knack for knowing the lyrics to popular songs. When he was a toddler I taught him Beatles and Bob Marley lyrics. This past year he’s got me singing along with Pink and Bruno Mars and, on Super Bowl Sunday, I got lucky: the half-time performer was, indeed, Bruno Mars. So, even though the popcorn was finished, Jonah and I sang along with the last song – “Just the Way You Are.” Then after the song was done, I hurried into the kitchen to make more popcorn.
On New Year’s Eve, my wife, Cynthia, our son, Jonah, just turned fifteen, our new puppy, Phoebe, five months old, and I gathered around our dining room table to make our resolutions for 2014. The easiest to come up with was Phoebe’s. She resolved to be house-trained by the end of January at the latest. Okay, we came up with that one on her behalf, but I didn’t see much difference between us wanting her to realize her full potential and Cynthia, for instance, wanting to receive more foot massages and back rubs in the coming year. Both are cases of wishful thinking being imposed on others. Both seem, even in the hopeful glow of the New Year, like long shots.
“And what’s your resolution?” Cynthia asked me, as if she really had to. In fact, she and Jonah could both guess mine correctly. “I resolve to be less crabby,” I announced. Even Phoebe looked skeptical.
“A lot less, man,” Jonah added.
Jonah’s new habit of referring to everyone as “man” – that includes his mother and the dog – is, I confess, one of the things making me crabby these days. Jonah is on the autism spectrum and, as a result, he’s always been more likely to pick up verbal tics (or stims, as they’re called in the world of autism) and sustain them for longer than most other kids would. I should be used to this sort of thing by now, but being called “man,” instead of daddy or dad, is driving me a little crazy. It’s like sharing the house with Jack Kerouac. I mean if Jonah has to talk like a 1950s beatnik, can’t he at least call me daddy-o?
Cynthia doesn’t like this new term of endearment much either, mainly because it doesn’t sound that endearing. Still, she reminds me to let Jonah express himself the way he chooses to. Self-expression is hard for a kid with autism so you take it where you can find it. In fact, we take it as a sign of the thing we want most for him nowadays – independence.
His mother and I were terrified the first time we sent Jonah to sleep-away summer camp three years ago, but the main reason we did it was so we wouldn’t always be around to do things for him. To a surprising extent, this plan worked. He became resolved to do more things on his own; we became determined to let him. We remain grateful to his experiences at camp for allowing him and us to see our interconnected resolutions through.
Lately, Jonah insists on going to the corner grocery store on his own whenever we are out of milk or orange juice or green beans. (What can I say? The kid is different; he loves green beans.) The first few times he left for the store I followed him, ducking behind parked cars and recycling bins, as if I were a private detective trailing a criminal suspect. Now, I still worry, but I manage to stay in the house. By the time I finally decide I must head out and find him, he’s invariably on his way back, happily swinging the plastic bag of green beans he just bought.
The other day I also let him take the dog out for a short walk as far as the grocery store. I watched anxiously from the window as Phoebe, still very puppyish, jumped all over him, but eventually they did some walking. Phoebe also did what she was supposed to – some peeing. As for Jonah, he brought her back safe and sound. I couldn’t have been prouder of both of them. When my son got back into the house, I asked him how it went as if I hadn’t been watching him every single moment. “No problem, man,” he said.
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.”
This summer my plan is to start writing a book with the working title God Laughs: How Judaism Ruined My Life. I recently received a grant to proceed with the project, but the idea is still a little vague as is my plan for its eventual execution. I like the title though – taken from the famous Yiddish proverb, “Man plans and God laughs” – and I especially like the subtitle, though I can see it getting me into trouble down the road. Also, in thinking about what to write, I keep coming back to a recurring theme in my life or, as I prefer to call it, a running gag – my ambivalence about being Jewish.
A quality, incidentally, I do not share with my 14-year-old son, Jonah. This probably shouldn’t be surprising. Jonah has autism and ambivalence is not really something he’s wired for. He lives in a predominantly black-and-white world and is inclined to take things literally. And while, lately, he’s become more interested in complicated, existential issues like what happens to us after we die and why does time only move forward, I couldn’t even guess if he believes in God in the conventional sense. Then again, I doubt he’s plagued by doubts about how Jewish he is or feels. He’s Jewish, mainly because his mother and I told him so. A reason, let’s face it, that has been good enough for countless generations of Jews before both of us.
Still, I’ve never seen Jonah quite so focused as when he’s following along with the reading from the Haggadah at family Seders. Or, last year, when he just about flawlessly delivered the long, difficult Hebrew passages in his bar mitzvah portion. Jonah has also participated in the Friendship Circle since he was a kid. Friendship Circle is a branch of the Chabad movement, with chapters across North America as well as in countries like Australia, France, England, South Africa and Israel. Its mission is to provide friendship and foster acceptance for kids with special needs by matching them up with volunteer teenagers. (It also fosters much-needed respite for the parents of kids with special needs.) Jonah is right at home whenever he shows up at the Friendship Circle for an event or a simple get-together. In June, he participated in the Montreal chapter’s annual and rather extravagant fundraiser. It was a talent show this year and Jonah was one of the featured acts. He was a hit singing and playing “Hey Jude” on his guitar. I’m guessing the Friendship Circle organizers aren’t big Beatles fans but I hope they noticed that the lyrics he sang perfectly summed up what their organization is so open-heartedly dedicated to doing. Simply put, to “take a sad song and make it better.”
The B’nai Brith sleep-away camp Jonah attended last year and will go to again this year is obliged to have a more ecumenical approach than the Friendship Circle as it has to cater to a wide spectrum of Jewish beliefs. It’s not specifically orthodox or reform or conservative. This is one of the issues that can be tricky to deal with, the camp director Josh Pepin admitted to me recently. He and his staff will have to weigh how much religious instruction is too much; and how much is too little. Whatever they decide on I suspect Jonah will greet it with his unique brand of matter-of-fact spirituality, one I often find myself envying. He will enthusiastically participate in Friday Shabbat dinners and Saturday morning services. When the Israeli flag is raised he will sing the Hatikvah loud as he can. He will spend his summer living Jewishly. “Jewish identity is paramount at our camp,” Pepin told me. “Our job is to create Jews.” With Jonah, they already have one. With me too, for that matter, though I’ll spend this summer – as I’ve spent most of my life – wondering what being a Jew means to me. I’ll also probably have to figure out a way to explain my book’s subtitle to whoever I end up telling about my book. I’ll have to point out that when I say Judaism ruined my life, I’m just joking. Well, half-joking anyway.