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.”
I’d like to say that my wife, Cynthia, my son, Jonah, and I are enjoying a wide variety of family activities in the last few days before Jonah heads off to sleep away camp. That we’re having picnics on the beach, visiting museums, and attending performances of Shakespeare in the park. But the truth is we’re spending almost every waking moment packing and labeling. These twin chores seem endless. What to send with Jonah and how to make sure the majority of it returns with him has become an all-consuming job.
Jonah’s camp has graciously provided guidelines for what to pack, though they are more helpful in theory than in practice. Twenty pairs of socks, for instance, assumes that your average teenager – Jonah is fourteen – your average human being, for that matter, has ever succeeded in owning twenty pairs of socks that match. Some of the guidelines we are determined to ignore. So while four bathing suits are recommended, we’ll send at least twice that many. Given Jonah’s love of the water, we know he’d sleep in a bathing suit, in the lake, if he could get away with it. Which is to say, who needs to pack all those pajamas? The camp’s list also provides an encouraging glimpse into what Jonah will not get to do (only non-electronic games, i.e. board games); and what he will be expected to do, like regularly attend Friday Shabbat dinners (white tops, modest outfits).
But it’s the requirement to label everything we pack – from toothpaste tubes to flip flops – that is our most time consuming activity these days and also surprisingly expensive. Last year, my wife ordered labels and ended up paying fifty dollars for what turned out to be a rather small and unimpressive packet of personalized stickers. Of course, the cost wouldn’t be so bad if the whole exercise didn’t seem so pointless. Inevitably, Jonah comes home with some other kid’s underwear and a pink My Little Pony tank top.
This summer we have made sure Jonah has a more active role in the packing, in particular. We are wincing but saying nothing whenever he matches striped shirts with checked shorts. We had to speak up, though, when he insisted on taking his iPad. Camp rules, not ours, we informed him. Then we tried, mainly unsuccessfully, to explain to him how to play Monopoly. We are letting him take his old guitar, however. In fact, I have already labeled it. I affixed a small Jonah tag to a place where it is very unlikely to be spotted. With any luck at all, he will not only learn some traditional camp songs, but he will come home with a newer, better guitar.
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.
While I enjoy being in the water, backyard swimming pools mostly, I’ve had less success being on it. This is probably attributable to the fact I never went to sleep-away camp as a kid. In fact, when I learned that my son, Jonah, got up on water-skis last summer, albeit briefly, while he was at Camp B’nai Brith in the Laurentians, an hour north of Montreal, I was surprised the apple had fallen so far from the tree. Of course, I blame my camp-free childhood on my parents. I like to think the reason my parents insisted on keeping me around was because I was so much fun, but as a parent myself now, I know that can’t possibly be true. In retrospect, I can see that the reason my parents never sent me to sleep-away camp was because they’d already gone to so much trouble – like so many Jewish families of their era – to move us out of the big city and into the suburbs that they convinced themselves suburbia was nature enough for any kid, theirs included. After all, we had a park down the street, a lawn. There were trees and birds chirping. There was, eventually, a swimming pool in the backyard. To be fair, I agreed with them at the time. I had no desire to be shipped off to camp. Woody Allen once said that he was at two with nature and you can double that for me. Never comfortable in the great outdoors, I still get a little antsy when I am more than a half-hour drive from a shopping mall. The way I looked at it back then was: who needs camp?
Now, I’m thinking I did. Take my ineptitude with water craft, for example, which has plagued me for as long as I can remember and which led to one of the worst fights my wife, Cynthia, and I ever had. Also, one of our first since it happened on our honeymoon. We were staying at a swanky hotel up north, not far from where my son now goes to sleep-away camp, and Cynthia rented a pedal boat for us so we could leisurely make our way around a nearby lake. Once on the water, though, it became apparent that I couldn’t steer the thing. “Really?” Cynthia said. “It’s like driving a bike with training wheels. A six-year-old could do it.” At which point, I grumbled something about having never gone to sleep-away camp and then angrily announced I was going back to the hotel to sit by the pool. A premature announcement, as it turned out, since I had to wait for my wife to steer us back to shore.
We never mentioned the pedal boat incident again. But a few years ago when we had the chance to take a canoe out on the lake near Cynthia’s parents’ cottage it looked like we were headed for another fight. It’s been said that “a true Canadian is someone who can make love in a canoe without tipping it” and by that measure I was barely Canadian at all. As a matter of fact, I was in my late 40’s at the time and had to admit to Cynthia that I’d never stepped foot in a canoe. Coincidentally, the first lesson Cynthia, who attended sleep-away camp all through her girlhood and was also a counselor for several years, had to teach me was that you don’t step into a canoe, at least not the way I was about to do it, like I was stepping onto an elevator. Instead, you stay low, hold onto both sides of the boat, centre yourself, and proceed with extreme caution. Evidently, canoes tip. As it turned out, there were a lot of instructions and I grumbled through all of them. But then a surprising thing happened once I was in the canoe: I stopped grumbling. I loved it. Nature was in evidence everywhere and, for once, it wasn’t bugging me. It was a crisp fall day: the air was light and the leaves were turning. I watched the dragonflies skid over the surface of the water and even spotted a beaver working away at a dam. My wife showed me how to paddle but even that effort felt, well, effortless. It felt like we were defying gravity, gliding across the lake like it was frozen. The experience was at once exhilarating and serene and a little sad, at least for me. For the first time in my life, I found myself wishing I’d gone to sleep-away camp. I also wondered how I might go about asking my son to take me with him this summer when he goes.
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.
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.
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.