Author Archives: Joel Yanofsky

Joel Yanofsky

About Joel Yanofsky

Joel Yanofsky is a Montreal writer. His book Bad Animals: A Father’s Accidental Education in Autism is available from Penguin in Canada and Skyhorse in the U.S.

A New Normal

PWP Studio photographers specialize in corporate event photography, decor, details, incentive travel, conventions, and on-location photography in Atlanta, GeorgiaSummer 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 weatherbalmy one day, freezing the nextis 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 crumbssymbols of their transgressionswhich 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 dayand 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.

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Posted on October 13, 2014

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Tikkun Olam: “Doing Stuff”

I’ll start with a confession. After writing these monthly blogs about summer camp for almost two years now, I still occasionally feel like a creature from outer space who’s landed on earth and has to have baseball or the Kardashians explained to him. You see, my parents never sent me to camp and, frankly, I never wanted to be sent. As a result, the experience is, indeed, alien to me. All to say that everything I know about camp I’ve been learning, vicariously, through my son Jonah.

jyHe’s been attending CBB (Camp B’nai Brith) for the last three summers. And when my wife, Cynthia, and I picked him up a few weeks ago from his record 23 days and 22 nights away in The Laurentians, a picturesque setting about 90 minutes north of Montreal, I found it easier than ever to put myself in his shoes. Sure, I felt the predictable paternal mix of relief and joy at seeing him again, but I also noticed something in his expression that revealed how much camp had meant to him. He looked, in other words, a little lost, fawned over by his mother and me. It was as if he was thinking: should I be here or with my bunkmates in the woods? Even, the rash of fierce bug bites around his ankles and calves were quickly acknowledged and then dismissed as if they were a kind of team insignia, a badge of honour. His disorientation faded, though, as we prompted him to say good-bye to his counselors and more important, as his fellow campers sought him out for a hug or a high-five.

This is, as I’ve said before in this blog, a big deal for Jonah. He has autism and making and maintaining friendships remains his greatest challenge. I can only guess at what he was feeling when he heard his name shouted out by a peer in that crowded parking lot, but I can tell you what I felt: proud and hopeful.

For this feeling Cynthia and I have CBB, their entire staff, and especially their executive director Josh Pepin to thank for taking a chance on Jonah three summers ago (when he stayed a week with a shadow) and for continuing to increase their hopes for and expectations of him. CBB has always seen meeting my son’s special needs as an opportunity. In this respect, the camp has, in my mind, lived up to the best sense of the Jewish tradition of tikkun olam or “repairing the world.”

I also confess to having to be reminded repeatedly that as daunting as that imperative may sound, it is invariably accomplished when we recognize those needs we are best able to address and then act. In short, when we do what we can to help. The Sam Lazarus Fund is an inspiring example of just such an approach to repairing the world. It started, tragically, when Sam Lazarus, a 25-year-old Montrealer working with children in an orphanage in Ghana, died of cerebral malaria in 2004. His mother Janet Torge, a Montreal broadcaster and writer, and his older brother Riel Lazarus, an archivist and researcher for film and TV, also based in Montreal, wanted “to do something” to commemorate Sam’s life. The result was a fund that would give kids who couldn’t otherwise afford to go to camp the opportunity to spend their summer at the YMCA’s Camp Kanawana, also located in The Laurentians.

It was a perfect fit since Sam loved working with kids – he was a camper and a staff member at Camp Kanawana for most of his childhood. The fit became even more perfect when a family friend suggested they also have an annual fundraiser every August, featuring a street hockey tournament. Sam was, according to his brother, a legendary street hockey goalie, albeit with a penchant for letting the occasional goal slip between his legs, the space otherwise known in hockey parlance as the five-hole.” Nine months after Sam Lazarus’s death, The Five-Hole Sam Street Hockey Jamboree or Sam Jam was born. Now in its 11th year, Sam Jam has raised around $230,000 and sent more than fifty kids to camp. The kids’ sponsorship or “campership” is kept anonymous so they are not singled out at camp. There is also a special effort made to send recipients back who want to go. “If they’ve had a great experience there, we don’t want to leave them out the next year for financial reasons,” Riel Lazarus said.

The street hockey tournament, which started with two teams, now has eight and the event has expanded every year. “We didn’t start all this with much of a motive. We were in a bit of a haze in that time after Sam’s death. We were just doing stuff,” Riel added.

Which is, come to think of it, a pretty good definition of tikkun olam: “doing stuff” that recognizes and addresses a need in the world.

For more information about the latest hockey tournament and the Sam Lazarus Fund you can go to the Facebook page: https://www.facebook.com/ysamjam. Or visit the Camp Kanawana website at: http://www.ymcakanawana.com.

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Posted on September 8, 2014

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Please Consider My Case

joel“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.

Posted on August 4, 2014

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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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“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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The What-if Moment

shutterstock_163265741There’s no point pretending this blog post is going to be about camp or summer, especially summer. Montreal in February is no picnic. In the grip of the latest polar vortex, I can’t even remember what a picnic is. This may explain why I sometimes wonder what if I only lived in a warmer climate; if my Russian-born grandparents, who had the foresight to flee the pogroms, also had the foresight to stowaway in steerage until their ship made it to, I don’t know, Miami Beach. In any case, they didn’t and now I stowaway in my house all winter. Even our dog, fluffy as she is, would rather stay in her crate until spring. Like the dog, I’m resigned to enjoying the great indoors. During the winter months, one of those indoor activities is party going. When they’re cold, Montrealers are a particularly sociable bunch; even anti-social types like me can’t duck every invitation.

But parties have their own hazards. At a recent get-together, I found myself making small talk with a woman I’d just met. Inevitably, we got around to discussing our children and discovered we both have fifteen-year-olds. She began describing her son’s efforts to find a good CEGEP – CEGEPs, here, are the equivalent of U.S. junior colleges – once he graduated from high school. I knew, of course, where the conversation was headed and braced myself.

“Your son must be thinking about CEGEP, too,” she said.

“Jonah is on the autism spectrum,” I said. “He attends a special needs school. College isn’t likely to be in the picture.”

A long silence followed; it seemed long anyway. There wasn’t much for her to say. She hadn’t said anything wrong. If anything, I felt a little bad for her. I’ve come to terms with the fact my son has autism, but that doesn’t mean I’m not brought up short, on occasion – reminded all of a sudden that your life, his life is going to be very different from the lives of other people. It’s what I call the “what-if-moment” – the moment you can’t help wondering what if your son didn’t have autism. What would his life, your life be like?

Such questions are at the heart of Bad Animals: A Father’s Accidental Education in Autism, the memoir I wrote a couple of years ago about my family. In some ways, writing the book brought me a small measure of acceptance. I don’t sweat the big stuff anymore. Wondering what it would be like if Jonah were headed for college makes as much sense as wondering what it would be like if I were heading out the door with my surfboard.

Still, the small stuff lingers. It would be nice, for instance, if Jonah and I shared an interest in sports, in particular watching sports on TV. Yes, I wish I could instill in my son my talent for being a couch potato – especially around now, Super Bowl time.

The good news is the “what-if” moments don’t linger. It helps, too, that I came up with some trick plays to keep Jonah in front of the big game a little longer than usual this year. Just before kickoff, I made a super-size bowl of popcorn and placed it strategically beside me on the couch. My thinking was: if I could just keep Jonah there until half-time, I knew he’d want to stay for the half-time show. Jonah and I do share a love of music as well as an uncanny knack for knowing the lyrics to popular songs. When he was a toddler I taught him Beatles and Bob Marley lyrics. This past year he’s got me singing along with Pink and Bruno Mars and, on Super Bowl Sunday, I got lucky: the half-time performer was, indeed, Bruno Mars. So, even though the popcorn was finished, Jonah and I sang along with the last song – “Just the Way You Are.” Then after the song was done, I hurried into the kitchen to make more popcorn.

Posted on February 3, 2014

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We Hereby Resolve

joelOn New Year’s Eve, my wife, Cynthia, our son, Jonah, just turned fifteen, our new puppy, Phoebe, five months old, and I gathered around our dining room table to make our resolutions for 2014. The easiest to come up with was Phoebe’s. She resolved to be house-trained by the end of January at the latest. Okay, we came up with that one on her behalf, but I didn’t see much difference between us wanting her to realize her full potential and Cynthia, for instance, wanting to receive more foot massages and back rubs in the coming year. Both are cases of wishful thinking being imposed on others. Both seem, even in the hopeful glow of the New Year, like long shots.

“And what’s your resolution?” Cynthia asked me, as if she really had to. In fact, she and Jonah could both guess mine correctly. “I resolve to be less crabby,” I announced. Even Phoebe looked skeptical.

“A lot less, man,” Jonah added.

Jonah’s new habit of referring to everyone as “man” – that includes his mother and the dog – is, I confess, one of the things making me crabby these days. Jonah is on the autism spectrum and, as a result, he’s always been more likely to pick up verbal tics (or stims, as they’re called in the world of autism) and sustain them for longer than most other kids would. I should be used to this sort of thing by now, but being called “man,” instead of daddy or dad, is driving me a little crazy. It’s like sharing the house with Jack Kerouac. I mean if Jonah has to talk like a 1950s beatnik, can’t he at least call me daddy-o?

Cynthia doesn’t like this new term of endearment much either, mainly because it doesn’t sound that endearing. Still, she reminds me to let Jonah express himself the way he chooses to. Self-expression is hard for a kid with autism so you take it where you can find it. In fact, we take it as a sign of the thing we want most for him nowadays – independence.

His mother and I were terrified the first time we sent Jonah to sleep-away summer camp three years ago, but the main reason we did it was so we wouldn’t always be around to do things for him. To a surprising extent, this plan worked. He became resolved to do more things on his own; we became determined to let him. We remain grateful to his experiences at camp for allowing him and us to see our interconnected resolutions through.

Lately, Jonah insists on going to the corner grocery store on his own whenever we are out of milk or orange juice or green beans. (What can I say? The kid is different; he loves green beans.) The first few times he left for the store I followed him, ducking behind parked cars and recycling bins, as if I were a private detective trailing a criminal suspect. Now, I still worry, but I manage to stay in the house. By the time I finally decide I must head out and find him, he’s invariably on his way back, happily swinging the plastic bag of green beans he just bought.

The other day I also let him take the dog out for a short walk as far as the grocery store. I watched anxiously from the window as Phoebe, still very puppyish, jumped all over him, but eventually they did some walking. Phoebe also did what she was supposed to – some peeing. As for Jonah, he brought her back safe and sound. I couldn’t have been prouder of both of them. When my son got back into the house, I asked him how it went as if I hadn’t been watching him every single moment. “No problem, man,” he said.

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Posted on January 7, 2014

Note: The opinions expressed here are the personal views of the author. All comments on MyJewishLearning are moderated. Any comment that is offensive or inappropriate will be removed. Privacy Policy

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