Tag Archives: Disabilities

Cold Feet

joelLater 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.

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Posted on July 18, 2014

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Togetherness Squared

Camp_Ramah_0480_IMG_0134For 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 Shininga 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.

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Posted on June 11, 2014

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Easy Money

0413_138014-FJC_x_x - CopyFor 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.

Find out if this program is available in your area here

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Posted on May 12, 2014

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Chaos Theory

shutterstock_93712219When 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.

Posted on April 11, 2014

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Inclusion at Jewish Camp

20140325_FJC_LEADERS_ASSEMBLY_MZ_0578 - CopyLast 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.

Posted on April 1, 2014

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“Would Life Have Been Better Without Your Son?”

joelThe 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.

 

 

Posted on March 14, 2014

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Being Included

RFF_ReelAbilitiesFilmFest6_72dpiReelAbilities: NY Disabilities Film Festival is the largest festival of its kind in the country. We present films by and about people with disabilities and share the lives, stories and experiences with the broad NY community, featuring in over 30 locations throughout NY and in 14 additional major cities nationwide. The festival was started and is run out of the JCC in Manhattan and supported by UJA Federation, yet it is not specifically a Jewish festival. It presents films from across the spectrum of disabilities and is as inclusive as possible. So why is this festival being supported by the Jewish community?

I feel this festival connects in a few ways. The first and most obvious is the concept of Btzelem Elohim that we were all created in the “image of god,” and therefore, everyone is equal. All humans. But more importantly, over the years I have realized that the festival is part of a social movement. Creating inclusion and equal access for people with disabilities is the new Civil Rights Movement. The Jewish community was so involved with the Civil Rights Movement, because we know what it feels like to not be included.

Jewish camps got their start in order to create a place where Jewish kids can feel included. One of the wonderful qualities of camp is that everyone can find their place in this mini-utopia. There is always the kid who is “different” and does not fit in but in an inclusive environment like camp, being different is acceptable. We are all different and should all be included.

ReelAbilities use great films to foster social change and believe that this will lead to a more inclusive society. We will be including some of our short films (Reel Encounters) in the Foundation for Jewish Camp’s conference. Reel Encounters includes family friendly short films on a diverse selection of disabilities.

ReelAbilities is running in New York from March 6-11 at the JCC in Manhattan and in over 30 locations throughout NY followed by 14 additional cities throughout the year. For more info check out www.NewYork.ReelAbilities.org

Posted on March 6, 2014

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Share the Word to End the Word Day

r-word.orgToday is Share the Word to End the Word Day. The word “retard” that is.

It was once acceptable to use the words “mental retardation” as a clinical description for people who had below average IQ’s and had delays in adaptive skills. Nowadays, the r-word has a significantly negative connotation as it has often been used on playgrounds and in school hallways as a put-down. Even adults have used it, and still use it, in conversations when referring  to something or someone as being an idiot or idiotic. Due to the incredible misuse of this word and the hurt that it causes, we now use “intellectual disability” as a replacement.

One of the purposes of today, is to ask people to pledge to remove the word from their vocabulary and to discourage others from using as well. The r-word must be replaced with RESPECT, respect for people of all abilities. It should also be replaced with what we call “people first language” (a child with autism, a person who is hard of hearing, a person who uses a wheelchair, my brother, my bunkmate, my friend). A person’s disability should never be what defines him or her; it is only a part of who that person is. As we continue to move in the direction of inclusion for children with disabilities at Jewish camp we will break down barriers and allow children and adults at camp to learn what makes us more alike than we are different and why the words that we choose to use even in jest, must always be respectful and must always put people first.

 

Posted on March 5, 2014

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