Summer is over and the excitement of my son Jonah’s longest ever stay at sleep-away camp, three weeks, is starting to feel like a distant memory, an anomaly even. In other words, fall is here and things are returning to what feels, for better or worse, like normal for a family with a child with autism.
If summer seemed full of promise, fall feels more precarious. School has started. There are buses to be met, lunches to be prepared. And the leaves are changing. The fickleness of the weather—balmy one day, freezing the next—is not something I ever paid much attention to as a lifelong Montrealer. But most kids on the autism spectrum don’t like change and Jonah’s no exception. That includes changes in the temperature. Some mornings, he and I end up in drawn-out, complicated debates about the appropriateness, say, of wearing shorts and sandals on a chilly October morning.
This time of year, the Jewish High Holidays, also add to the feeling that we’re back on the same old autumnal schedule. My family remains actively involved with our Reform Temple, often without me, I confess. For the start of Rosh Hashanah, for instance, Cynthia and Jonah showed up along with the rabbi and other members of the congregation at a pond in a neighborhood park to participate in Tashlich or the ritual of casting away our sins. As Cynthia described it to me later, the ceremony began with some songs and prayers and the usual-suspect list of sins: deception, selfishness, arrogance, that kind of thing.
Everyone had also shown up with bread crumbs—symbols of their transgressions—which they were expected to throw into the pond. Before doing this though, each person went off on his or her own. It was an opportunity to meditate on the past year and the year to come. “I liked that part,” Cynthia told me later. “But Jonah really got into throwing the bread into the water.” Apparently, he had used his meditation time to compile a rather extensive list of kids he’d bugged on the school bus. Cynthia did her best to keep pace, but it wasn’t easy. As Tashlich ended, Jonah, with his own typically dramatic flair, threw one final and substantial fistful of bread crumbs into the pond, exclaiming as he did: “I cast away the sin of being a pest.”
Fall, more than any other season, reminds me that I have to be aware of how our son interacts with the world and how the world responds to him. The world, I’m afraid, does not always respond well. Lately, I’ve noticed more jokes about “short buses” – the kind of school bus that picks up Jonah every day—and the kids who ride them than in recent years. I’ve heard these jokes repeated, in one hurtful form or another, on TV shows, spoken by beloved characters, on podcasts from respected cultural and political commentators, even at a speech at a wedding of close friends we recently attended. I know it is easy, sometimes reflexive, to make fun of people who are different. I just wish it weren’t. I wish that this commonplace, everyday kind of intolerance was one transgression we all worked harder to cast off.
People are mostly nice, Cynthia wanted me to add here, but there are still looks and comments she and I deal with or, more likely, ignore every day when we are out in the world with Jonah. They happen everywhere, even in the most unlikely places. Here’s an example of an experience Cynthia and Jonah had the other day at Temple. The story is related in my wife’s words:
“I was looking around at the family service and all the beautiful children, especially a little girl snuggling with a boy and an even littler girl. I thought how nice it was for them to have that cosy time together and to get a good feeling for the service. Then this sweet little girl turned around and told my son, who was singing the prayer (correctly, I might add), to be quiet. Then my son started talking to himself and writing with his finger (a kind of stim he uses to calm himself). The little girl looked at her friends and made the finger sign for ‘crazy’ about my son. I am not sure if he noticed or not.”
Incidentally, Cynthia emailed this story to our rabbi, who included the passage in her recent Rosh Hashanah sermon on tikkun olam. To Cynthia’s story, the rabbi added: “There is so much that needs healing. But our tradition teaches that that is precisely why we are here and why our existence is worthwhile: to be God’s hands in this world.”
Last year, Cynthia started a special needs committee at the Temple. The idea remains a simple one – help make a place already welcoming, by definition, become more so.
“I don’t know how to help these children be more compassionate and be enriched by people who are different,” Cynthia concluded in her email to the rabbi, “but that is the goal.”
Not a bad one for this time or any time of year. Not a bad time, either, to cast off the normal ways of thinking about my son and others like him and get to work on fashioning a new normal.
“You’ll see, he won’t want to leave in the end,” my wife, Cynthia, said. “He’s going to have the time of his life.”
“Not if his soon-to-be bunkmates see him crying?” I replied. Cynthia and I were in the process of putting our son, Jonah, on the bus to Camp B’nai Brith (CBB). CBB is a little more than an hour drive north of our home in Montreal and the plan was for Jonah to be there, if everything went according to plan, for three weeks. It would be, by far, the longest he’d ever been away. All we could do was speculate—and we figured to do a lot of speculating in the next twenty-one days—on how he would fare.
Incidentally, Jonah wasn’t the crying boy. In fact, our son headed straight for a seat at the back of the bus as soon as we arrived at the drop-off point. I didn’t even have a chance to hug him. I had to mouth my “have a great time!” through the tinted glass of the closed window. In return, I received the most cursory of acknowledgements. As if he was saying: “Let’s get this show on the road.”
Cynthia, however, boarded the bus in order to get a proper good-bye. She insisted Jonah hug her. I got on the bus, too, to watch and glimpsed something I don’t think I’ve ever seen on my fifteen-year-old son’s face—the hint of a blush. Jonah is on the autism spectrum and one of that complicated disorder’s mixed blessings, in Jonah’s case anyway, is obliviousness to embarrassment. This has served to make Jonah a uniquely sweet, open-hearted individual; it also means he can miss signals from others, emotional signals he’d be well-served to pick up on. In fact, this was one of the main reasons we were sending him to sleep-away camp. We hoped he’d learn to understand other people a little better, pick up on their cues.
Meanwhile, the crying boy, who was twelve or so, was also oblivious—to the pleading of others. And a lot of pleading was going on. You could barely make the poor kid out from behind a gesticulating crowd of relatives. Still, I could see his head shaking vehemently and hear his spluttering voice. He was repeating the words: “I’m not getting on the bus.” The more he cried the more relatives seemed to gather around him, all trying out different, often conflicting strategies, to reassure him. Eventually, a SWAT-like team of CBB counselors appeared and did an impressive job of liberating the reluctant camper from all that overwhelming love and concern. Their mission was clear: they were going to get the show on the road.
We’re “helicopter parents,” research studies and thinky magazine articles are always reminding us. When it comes to the parents of special needs kids, like Cynthia and me, this is an especially tone deaf judgment, but it’s kind of a slam at most parents when you think about it. In the case of summer camp, in particular, who can blame us for projecting onto our kids a little of our own childhood experiences? For Cynthia, this usually means remembering how “interesting” (the quotes are hers) summer camp was. For me, it means wondering how I would have fared at camp seeing as how I never went. My guess is I would have cried myself to sleep nightly. Then again, maybe not. Fortunately, the camp cliché persists, especially for worried parents, about how the kids who make the biggest fuss about going end up not wanting to leave. But that doesn’t make those childhood complaints any less real or any less eloquent. I have a friend who came across an old letter she sent to her parents from summer camp when she was probably seven or eight. It began with a description of her day and proceeded to a detailed list of grievances. She signed off with this lawyerly appeal: “Please consider my case.”
Camps nowadays are good at considering the concerns of parents, at least. CBB does a wonderful job with its daily online postings of dozens and dozens of photos. I search for Jonah, first, of course, relieved to find him hanging out with his fellow campers in the pool or playing basketball or out in a canoe with one of his counselors. But after I’ve assured myself that it looks like my son is having a good time, I can’t help looking at all the photos. There are kids waving, hamming it up for the camera, others lost in play. The photos convey camaraderie and mischievousness and, most of all, a spirit of fun. So much so I wish I knew more about each of their personal stories.
“That’s him?” Cynthia said the other day, glancing over my shoulder at the super-slow slide-show I was watching on my computer. I looked for the latest picture of Jonah but didn’t see it. “No,” Cynthia added, “the boy who refused to get on the bus.”
She was right. It was him: in his floor hockey gear, smiling widely in one shot; with a wide circle of new friends surrounding him in another shot. He was the happy camp cliché personified: he looked like he never wanted to leave.
In partnership with The Jewish Week’s “The New Normal” blog, FJC is pleased to present a series of blog posts featuring a range of different voices sharing the power and benefits of Jewish camp for those in our community who have disabilities.
We have all heard that Jewish summer camp is one of the most valuable experiences a parent can give their child to ensure a strong Jewish foundation. If you think of it as a construction project, the footings beneath the foundation is community and together, this community builds the foundation they share. As each child grows into an adult, the shared experience of community-building in a Jewish context continues to strengthen his or her Jewish foundation.
But the Jewish child with disabilities who cannot have a summer camp experience is left with an unstable foundation or worse; no Jewish foundation. As the parent of a child on the autism spectrum, I live with the fear shared by all parents of children with disabilities: Who will be my child’s community when I am no longer here to provide it?
At age 11, we began sending our son to overnight Jewish summer camp with his younger sister. A condition of his acceptance, we contracted with the camp for a one-on-one aide who slept in the cabin with our son and shadowed him as he moved with the mainstream campers. Each year it became more apparent that our son lacked the social and life skills his cabin-mates had developed and lacking these skills in a mainstream environment, our son would not be perceived as a full participant in this community.
Though we had resisted the model of separating campers with special needs from mainstream campers by cabin, at the urging of our rabbi, I contacted the director of Ramah Wisconsin’s Tikvah program when our son was 14. In describing the program, the director explained that every year since his arrival, the Tikvah program had become more integrated with the greater Ramah community. To my surprise, he suggested we keep our son in his current camp for another 2-3 years, at which time he believed Ramah would be ready for him.
After much discussion that included Ramah staff traveling from Chicago to our home in Minneapolis, our son left for his first summer as a Tikvah camper when he was 17. Tikvah campers are connected to Machon (campers entering 10th grade) from which a select group are chosen by staff to be paired with each Tikvah participant as their chaver (friend). Four weeks later at visitor’s day, I observed that the culture of the camp was one of acceptance, regardless of ability, with staff and campers embracing everyone in the Ramah community. With his chaver, our son participated in both typical camp activities and special programs for the Tikvah-Machon group.
After two years, our son moved into the Atzmayim (vocational) program where campers live in dormitory-style housing and focus on social skills and life skills development. Ramah staff trained our son for his job in town and also provided a job coach, ensuring he always felt like a productive member of a professional team. Five days a week, he had to prepare himself for his work day, beginning with prompt attendance at morning services, dressed for his job in town.
As a guest last summer on a non-visitors day, I witnessed my son as a full participant in the rhythm of Ramah, comfortably engaging with campers and staff and taking responsibility for his personal care with a conscientious focus on his summer job at the local grocery store. I also saw my son embracing Torah study and discussion about a myriad of Jewish topics, which made him feel so proud to be part of this Jewish community.
Now 21, our son is completing his final summer as a Tikvah/Atzmayim camper. Looking back, I can honestly say that each summer we witnessed significant social and emotional growth, along with life skills development; all of which has contributed greatly to his self-confidence. Through these programs, our son was given a safe, nurturing Jewish environment in which to grow and develop on all levels. Through Ramah and its culture of acceptance, our son was able to experience community-building in a Jewish context and after five years, he leaves with a solid Jewish foundation.
Later this month, my fifteen-year-old son, Jonah, is off to Camp B’Nai Brith (CBB) in the Laurentians, about an hour north of Montreal. He’ll stay for a full session, three weeks, longer by far than he’s stayed before. Naturally, I’m feeling some anxiety on his behalf. Or projecting, as my wife Cynthia calls it. She has a point. The idea of being in an isolated place for a prolonged period with strangers and nature (i.e. mosquitoes and a lack of air condition and Wi-Fi) has never been my idea of fun. That’s why my case of cold feet will be getting colder as the day of Jonah’s departure approaches. It’s in my nature, as a person and a writer, to find inspirational quotes that may be appropriate to any given situation. Inevitably, though, the quotes end up being inadequately inspirational. Like this one from the British writer Julian Barnes: “Time… give us enough time and our best supported decisions will seem wobbly…”
I also find myself wondering how much Jonah really wants to go. Projecting again, no doubt. In any case this kind of information would probably be hard to pry out of any teenager. Still, I know kids must get cold feet about sleep-away camp, too. Cynthia enjoyed her time as a camper and later a counselor, but she also remembers her decades-old “Y” camp song word for word. The first couple of lines, alone, are a model of adolescent ambivalence: “I go to YCC, so pity me. There’s not a boy in the vicinity.”
Measuring Jonah’s mixed feelings can be tricky. Jonah has autism and he can have a hard time making it clear how he’s feeling. Cynthia and I know him well enough to read between the lines of his sometimes off-topic conversation. But we also look to his behavior for unspoken clues. The other day, for instance, my sister, Marilyn, and I took Jonah shopping to pick up some of the extra clothing he needs for camp. When he and I got home we showed everything we bought to his mother and then I put them on his bed so he could put them away as he does with all his clothing. We’d bought some pretty cool t-shirts and shorts so I figured he’d want to wear them till he left for camp in a few weeks. The next day though I couldn’t find any of the things we’d bought. I looked for them in every drawer. I quizzed his mother. Finally, I did what I should have done in the first place. I asked Jonah where all his stuff had gone.
“In my bag,” he said.
“What bag?” I asked.
“The one for CBB.” And, indeed, there they were. All stuffed into one of the gym bags he will be taking with him to camp. It seems he can hardly wait.
His keenness is reassuring. Never more so than last weekend when Jonah, Cynthia, and I visited the CBB’s pre-camp Open House. Jonah was happy to see everyone, including counselors and staff he didn’t know. If my son has a philosophy, it’s cornier than mine but a lot more, well, inspirational. Summed up, it’s something like: “A stranger is a friend you haven’t met yet.” But he was really excited to see the counselors who were at CBB for his shorter stay last year. In fact, he seemed to have nicknames for all of them. “Hi, Quiet Wyatt,” Jonah shouted to one young man, who shouted back, “Hey Jonah, great to see you back!” He hardly looked like the quiet type, which was what made the nickname funny, of course. “Max and the Yaks” was what Jonah told me he calls the fellow who runs the camp’s circus program.
Jonah loves animals, especially unusual ones, so when he met his unit head, Mike, the two immediately hit it off, discussing animals from Mike’s native Australia. I volunteered kangaroos and received a look of disappointment from both Jonah and Mike. Mike seems to have had his fill of kangaroos as the iconic but hopelessly clichéd symbol of his country. Instead, he provided Jonah with a great deal of information about the platypus. “You know it’s one of the only mammals that lays eggs,” Mike said. Then he told Jonah it was from the small family of animals known as monotremes. “Like horses are equines and cows are bovines?” Jonah asked. “That’s right, mate.” Mike seemed to know just how to talk to Jonah, which was reassuring. Cynthia also found out that in Australia he was a teacher and had a class of kids with autism. Driving home, I already felt my feet warming up. Jonah and I also brainstormed about nicknames for his newest stranger/friend. So far, though, we’ve only settled on what Jonah won’t call him—Kangaroo Mike.
For the last four summers, whenever my wife, Cynthia, and I have put our son, Jonah, on the bus to sleepaway camp we have experienced one of those rare moments couples share: we not only find ourselves on the same page, we find ourselves on the exact same line on that page. We see in each other’s expressions an identical mix of anxiety and relief. We are concerned about how our son will fare, of course, but we’re also free. Yes, to turn this into a very bad joke, we are free at last!
Still, our particular sense of emancipation has to do with the fact that Jonah, who has autism, is a constant in our everyday life. As we are in his. (I’m sure Jonah, once he’s on that bus, is equally relieved to be on his own and free of us.) Every member of a special needs family is well-acquainted with the joys and stresses of what is, after all, an extremely heightened kind of inseparability. Call it Togetherness Squared. All of which may explain why when I first talked to Sid Milech, director of Montreal’s YM-YWHA Harry Bronfman Y Country Camp (YCC), about a new program he’s inaugurating this summer called the Special Needs Family Camp, I had my doubts.
The program, one of the first of its kind in Canada, will make the facilities of the YCC, located in Quebec’s scenic Laurentian Mountains, available to special needs families for a long weekend in mid-August, after the camp’s regular summer sessions are done. Every family will have a cabin to themselves and be able to participate, as families, in the camp experience. That includes the special needs kids themselves, who will be accompanied by a “buddy” provided by YCC, the siblings of the special needs kid, who will participate with their peers in a wide range of camp activities, and, finally, their parents. Again I have to confess, this sounded to me, at first hearing, like a remake of The Shining—a family all alone in a cabin the woods. Still, the more Milech explained how the program works the better this kind of family togetherness started to sound.
For one thing, parents will have a lot of time to themselves during the long weekend, time to enjoy the camp’s surrounding and time to spend not worrying, for a change, about what their kids are doing and how to structure their time. Milech is still assembling his staff for the session, hiring “buddies” and counselors. He also has a psychologist and a Montreal rabbi, with a background in special needs, on board. It’s the best of both worlds, Milech explained when we talked. “This is meant to be a family holiday, a supervised holiday, true. But, most of all, it is intended to give everyone a break,” he said.
Milech’s Special Needs Family Camp is closely patterned after Tikvah Family Camp, a program run by Camp Ramah in New York’s Poconos region. Tikvah Family Camp started six years ago and Adena Sternthal has been its director for the last five years. It also takes place in mid-August, after the regular camp session is done. That’s when Sternthal makes room for 15 to 20 families, primarily families with kids, between four and 13, on the autism spectrum. Sternthal has come to appreciate how much Tikvah Family Camp means to its participants.
“Visiting theme parks and other more typical vacations aren’t always easy for families with kids on the spectrum and for a lot of our families this is their only real vacation. The parents are always telling me this is what they talk about all year long,” Sternthal pointed out. “They also tell me how amazed they are to have the chance to see their kids do things they never thought they could do, like being out on the rope course or enjoying the water. For our part, we want the special needs kids to experience things they haven’t experienced before. We will take them out on the water, in a rowboat, for example, and if it takes two hours to do it, to make them comfortable, we’ll wait. We’re not going anywhere.”
One of the unexpected consequences of Tikvah Family Camp, and Milech expects this to be the case in his Special Needs Family Camp too, is the way parents from these families bond, develop their own unique kind of togetherness. “We provide them with connections with other parents who are in the same boat,” Sternthal added.
Then she related a recent anecdote that illustrates the impression Tikvah Family Camp made on one family, in particular. “Last year was their second summer with us and at the end of the weekend, after everyone had said goodbye, this family came to my office and asked if they could speak to me. I thought, ‘Oh, my God, what happened that I didn’t know about, am I in trouble? Instead, they handed me an envelope. Inside was cash and a lot of it. They said they wanted me to have this money so another family who can’t afford the camp can come next year. I became a mess at that point. So when you ask me how the families feel about this camp, there’s your answer.
For more information on Montreal’s YCC Special Needs Family Camp, visit their website here.
For more information on the Tikvah Family Camp, visit their website here.
For the last few days, I’ve been walking around the house singing and dancing more or less in tune and in time with the Pharrell Williams song “Happy.” The reason is simple and seems, at first glance, rather materialistic.
You see, my wife, Cynthia, applied for a First-Time-Camper Grant for our son, Jonah, from a program called One Happy Camper and she got it. We received a $1,000 credit towards Jonah’s stay at sleep-away camp this summer. His eligibility for the money hinged on four facts. First, he’s Jewish and lives in Montreal where Federation CJA (Combined Jewish Appeal) partners with the Foundation for Jewish Camp in sponsoring the program. (Similar partnerships have been set up in close to 40 other communities across the U.S. and Canada.) Second, Jonah is going to a Jewish camp this summer. Third, he doesn’t attend a Jewish Day School. And, fourth, he will be attending camp for longer than 19 days, or a full session, for the first time. Those are the questions Cynthia spent a few minutes answering the online the other morning at OneHappyCamper.org. By the afternoon, Jonah’s camp had received the money on his behalf.
And while the $1,000 is great, it’s not the money that has me smiling and singing off-key. It’s the fact that it was so easy to get. I’m a writer who has both received government grants for projects and served on juries for other writers applying for those grants. I know how complicated most bureaucratic procedures can be. I know how much time and emotional energy it can devour. I’m also the father of a son with autism, as I’ve mentioned here before, which means my wife and I have spent a fair amount of time, spare and otherwise, jumping through hoops, filling out forms, and cutting through red tape just to get our son the services he requires. With One Happy Camper, the premium that was put on ease and simplicity was what my family appreciates most. Oh yes, my son’s autism was not a factor one way or another in this funding, which was also nice for a change.
“We want to make this as easy as possible for families,” Veronica Klein told me when we spoke the other day. Klein is a professional associate at the Generations Fund Jewish Camp Initiative, Federations CJA, and has been overseeing the One Happy Camper program in Montreal since 2008. “The idea behind the grant is to offer it as a kind of coupon, a spark or incentive for someone who does not attend Jewish Day School but who can still be able to experience that immersive quality of Jewish life at camp.”
Klein describes herself as a product of the Jewish summer camp experience as well as the Montreal community. She started going to camp when she was 12. That led to working with the community and working with kids here in Montreal and in the U.S. Klein could also be the poster person for the proven long-term impact and influence Jewish summer camp appears to have on its participants. Research seems to show that Jewish overnight camp can turn kids like Klein “into spirited and engaged Jewish adults” and “lay the groundwork for strong Jewish communities.”
“Camp is fun,” Klein adds. “But it’s not just flip-flops and canoes. Statistics bear this out. For example, kids who attend Jewish overnight camp are 10% more likely to marry inside their faith and 25% more likely to contribute to a Jewish charity. A program like ours is just another way to invest in the Jewish future.”
For me, it’s even simpler than that. I’m just pleased to know that there’s a good idea out there being executed efficiently. And because it is, my family and I are all happier campers.
For more info on One Happy Camper, visit their website here.
When you’re the parent of a child with autism, you’re always bracing yourself for the endless string of theories headed in your direction. They come from health care professionals, the media, family, friends and, my personal favourite, complete strangers. One woman we barely know keeps asking my wife, Cynthia, for a sample of my son Jonah’s urine so she can run her own tests on it.
The good news about all this is it helps you develop a thick skin, though never quite thick enough. I figured out pretty soon on this journey through what is sometimes called Autismland that the reason theories about autism are so plentiful is directly related to the fact that no one really knows anything definitive about it. In my experience, that includes mental health professionals who are, when it comes to matters of the brain, only guessing.
And the guessing persists. As do the studies generating all those theories. The latest trend in studies has put the emphasis on the ability of parents to cope with the challenges of autism on a day-to-day basis. Researchers seem determined to prove, every few months or so by my count, that there is a connection between raising a child with autism or other special needs and higher levels of stress as well as greater financial and marital challenges. Of course, whenever Cynthia and I hear about the latest results of one of these so-called “well-being” studies we roll our eyes and say pretty much in unison: “No kidding.”
“They could just ask any of us if we’re stressed,” Cynthia invariably adds. “They’d save all that money on research and they could use it to take us all out for dinner and drinks, lots of drinks.”
Or, in our case, they could buy us time to be more organized. In last month’s blog, I confessed we were behind in registering Jonah for summer camp. We’re still behind. That’s because chaos – missed deadlines, unmet obligations, double-booked appointments – has become the rule in our house. I would write a to-do list of all the things yet to be done, but frankly who has the time? or the confidence that it won’t get lost in the clutter?
As defined by WhatIs.com, chaos, with reference to chaos theory is, “an apparent lack of order in a system that nevertheless obeys particular laws or rules.” In other words, laws or rules you’ll never predict or figure out. But parents of special needs kids know that already. We have learned to expect the unexpected. Feeling stressed and overwhelmed every day is just part of that. Of course, there’s an advantage to living in a state of chaos. You’re hardly ever bored. Now, if I could just remember where I put that summer camp registration form.
Last week, the Foundation for Jewish Camp hosted our biennial conference, Leaders Assembly, in New Jersey. The topic of inclusion was high on the agenda and I engaged in so many invigorating conversations with colleagues about the topic and what each camp hopes to achieve within their own camp communities. Alexis Kashar, a civil rights and special education attorney, spoke to attendees about how growing up deaf impacted her access to the Jewish community. I was particularly struck by Alexis’ description of the effect that living in a home with a family with two parents and a sibling who were all deaf had on her sister who is hearing. Because synagogue life and supplemental school were inaccessible to the family, her sister was never introduced into it. Alexis stressed to us how inclusion has a ”ripple effect” and can profoundly affect the lives of the family of the person with disability.
Just one day after the close of the conference, I read the report that had just been released from the Centers for Disease Control and Prevention announcing that the escalating numbers of Autism Spectrum Disorder (ASD) diagnosis continued to rise. According to the report, one in 68 children are now believed to be diagnosed with ASD, a group of developmental disabilities that can cause significant social, communication and behavioral challenges. It reaffirmed for me the important work that our camps can do to engage children with disabilities and their families and continuing to evolve in order to embrace them in the best way possible.
People with ASD are common and prevalent members of any group of youth or adults. The drive towards inclusion is recognition of the new normal in our lives. In the past, specialists were sought to address the particular needs of individuals who “didn’t fit,” in a hope to “help them succeed.” But the numbers tell us that this is not a fringe issue. As camps continue to accept more and more children with a variety of disabilities, I hope that staff training focused on caring for children with disabilities will be offered to all staff so that everyone can better understand and interact seamlessly with a variety of capabilities and needs. Sports specialists, swim instructors, and other recreational specialists will likely be challenged to use techniques that will engage children who are not naturally drawn to activities such as sports and who need to be coached differently in order to acquire certain skills. Visual directions, visual schedules, sensory considerations and flexibility in choice of activities will likely become a part of necessary accommodations so that camp programs can become naturally inclusive. I can say that in all of the conversations and sessions in which I participated in at Leaders Assembly last week, I was happy to see that the field of Jewish camping is moving toward a more inclusive society where all campers will be able to experience success.
The call came the other day from our son Jonah’s sleep-away summer camp. Registration was almost completed and we hadn’t signed him up yet. Was there a problem? I explained the delay was because our son was on the autism spectrum and there were additional details that had to be worked out – about how long he would be staying, about the availability of a shadow for that time period, about the cost. I was tempted to go on from there to my usual rant about how much more complicated things were when you’re dealing with a child with special needs, but I refrained. You see, after my last blog post called the “The What-if Moment,” about how I sometimes imagine how much easier our lives would be if my son did not have autism, my wife, Cynthia, strongly suggested I might want to be a little less of a grouch in future.
Her request reminded me of an interview I did some years ago with the novelist Richard Ford. He told me that his wife challenged him to write about a happy character for once. The result was Frank Bascombe, the narrator of Ford’s three wonderful but hardly cheery novels, The Sportswriter, Independence Day, and Lay of the Land. I’m guessing the Bascombe trilogy just left his wife shaking her head. “This guy is supposed to be happy?” she was undoubtedly thinking. Even so, Ford tried. And so will I.
In fact, after last month’s blog, I was reminded of an event I did in a library a few years ago. I was discussing my book about Jonah and during the Q&A, an older woman prefaced her question by saying she didn’t mean to be cruel, a sure sign she was going to be. I braced myself, but still her remarks stunned me. Do you ever wonder, she wanted to know, if you would have been better off if your son had not been born? For example, she added, your wife and you would have had more time for each other. Or maybe, she went on, you could have written more books. Like I said, I was stunned and speechless. Which is when the audience, bless them, came to the rescue. After the woman had gone on for a while longer, they basically shouted her down. I never really got to give her a good answer, but I thought about her question later and I wished I’d had the chance to respond.
I could have told her about the little things I’d miss – the fun I have making up crossword puzzles with Jonah, one of our new pastimes, or listening to music with him in the car. Or the way he chooses bedtime to conduct his own Q&A, asking his most profound and challenging questions like this recent one: “Daddy, why does there have to be yuck in real life?”
I could have also mentioned the lessons I’ve learned from Jonah – about being different, about working hard, about living in the moment. Even so, the cliché about my son making me a better person hasn’t turned out to be true. The fact is he’s a role model I will never quite live up to. He constantly amazes me with his imperviousness to embarrassment and the judgment of others, with the sheer delight he takes in everything from meeting a new person to dancing to eating a brownie. And, of course, there’s the big thing I would have missed if Jonah was not my son – fatherhood. I was over forty when Jonah was born and I never expected to have a family of my own. Before Cynthia and Jonah, I was lonely for a lot of my adult life. Since I became a husband and father, I can’t recall what loneliness feels like. There’s no way to say this without sounding utterly sappy – and without being utterly honest – but Jonah gave purpose to my life.
After the recent death of the actor and filmmaker Harold Ramis (Caddyshack, Groundhog Day), I came across a small scene he did in Judd Apatow’s movie Knocked Up. Ramis’s work was an early influence on Apatow and Apatow cast him as Seth Rogen’s father, letting Ramis improvise most of his dialogue. While Rogen, who has just gotten a woman he hardly knows pregnant, is practically pleading for his father’s scorn, Ramis can’t contain his delight. “You are the best thing that ever happened to me,” he eventually announces to his slacker son. “Now, I just feel bad for you,” Rogen says, giving the scene its punch line. But it’s Ramis’s unequivocal, automatic declaration that still stays with me. In fact, I wish I could meet that woman from the library again so I could tell her I feel the exact same way about my son.
This post is part of our series dedicated to Jewish Disability Awareness Month.
The gates of camp will open in just over 100 days, and our participants from around the country are already counting down to sunny days at their summer home. At Kutz Camp, one aspect of camp we are particularly proud of is our Mitzvah Corps program. With the recent focus on disabilities and inclusion, it makes going into our 23rd summer of special needs camping that much more special. The Mitzvah Corps program at Kutz has grown and evolved into a truly integrated, mainstreamed summer camp program for Jewish teens with Autism Spectrum Disorders (ASD). There are two aspects of this program that are really remarkable.
The Mitzvah Corps program itself has been designed to meet the unique needs and characteristics of each participant in the program, creating individualized accommodations and modifications which allow each camper to succeed. These teens enjoy every aspect of camp life, and are able to build independence and resilience by having real choices in their daily activities. They are welcomed into the community with open arms, into an environment which fosters reciprocal learning, empathy, and understanding. In this open, friendly and supportive camp community, our teens with ASD are able to create friendships, explore their identity, gain independence, and grow in many ways. Perhaps the greatest outgrowth of this program is meeting with the parents of these teens, who are often overcome with gratitude and emotion for making a normative summer camp experience available to their child.
One of our campers, diagnosed with Asperger’s Syndrome, loves learning about Judaism and is particularly interested in prayer. She finds it difficult to fit in with her peers at school and in her home congregation. At camp, she participated in the Torah Corps Major, where teens gather for three hours each morning to study Jewish text, Jewish history, and engage in meaningful discussion and debate about a variety of topics relating to Judaism. Throughout the day she chose classes to attend on the subjects of Israeli culture and Jewish ethics, and participated in a variety of other activities and experiences. On the last night of camp, during a closing circle with the all of camp, she, who is generally very quiet and prefers not to be around large groups of people, stood up and addressed the group. She thanked everyone for helping create a place where she felt that she could “unwind.”
A few days after returning home from camp, her mother shared, “My daughter came home with enormously enthusiastic reports about her time at camp. She said she loved the Torah study and Israeli culture sessions and the singing and services. I really couldn’t be happier. Her older sister commented tonight that she was so much more outgoing and engaged this evening than she was before she left. We all think this is because she got accustomed to the much higher level of social demand at camp and it really strengthened her ability and desire to engage. I can’t tell you what a giant step forward this experience is for her. We are excited about how it has enriched her life and the possibilities it opens up for her future.”
In addition to the incredibly talented and dedicated staff who help make this program a reality, what gives the program its sparkle are the Chaverim. At Kutz each teen chooses a Major, a leadership learning area that is their primary focus during the session. The Mitzvah Corps Major is comprised of neurotypical teens that learn the skills of special needs inclusion, and are able to work as peer-engagers, helping with the integration of our special needs population into mainstream camp culture.
Not only are we able to provide a safe, nurturing, camp experience for our teens with ASD, we are also able to train the next generation of compassionate young people who will choose to continue this valuable work of accessibility for special needs populations as they move through college and into the work world. Fostering the next generation of advocates who will stand on the shoulders of all of those doing remarkable work around disabilities and inclusion today is one example of our commitment to a vibrant and just Jewish future. We are so proud of our hundreds of alumni of this remarkable program.
Find out more about URJ programs designed for special needs populations here.