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.
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.
There’s no point pretending this blog post is going to be about camp or summer, especially summer. Montreal in February is no picnic. In the grip of the latest polar vortex, I can’t even remember what a picnic is. This may explain why I sometimes wonder what if I only lived in a warmer climate; if my Russian-born grandparents, who had the foresight to flee the pogroms, also had the foresight to stowaway in steerage until their ship made it to, I don’t know, Miami Beach. In any case, they didn’t and now I stowaway in my house all winter. Even our dog, fluffy as she is, would rather stay in her crate until spring. Like the dog, I’m resigned to enjoying the great indoors. During the winter months, one of those indoor activities is party going. When they’re cold, Montrealers are a particularly sociable bunch; even anti-social types like me can’t duck every invitation.
But parties have their own hazards. At a recent get-together, I found myself making small talk with a woman I’d just met. Inevitably, we got around to discussing our children and discovered we both have fifteen-year-olds. She began describing her son’s efforts to find a good CEGEP – CEGEPs, here, are the equivalent of U.S. junior colleges – once he graduated from high school. I knew, of course, where the conversation was headed and braced myself.
“Your son must be thinking about CEGEP, too,” she said.
“Jonah is on the autism spectrum,” I said. “He attends a special needs school. College isn’t likely to be in the picture.”
A long silence followed; it seemed long anyway. There wasn’t much for her to say. She hadn’t said anything wrong. If anything, I felt a little bad for her. I’ve come to terms with the fact my son has autism, but that doesn’t mean I’m not brought up short, on occasion – reminded all of a sudden that your life, his life is going to be very different from the lives of other people. It’s what I call the “what-if-moment” – the moment you can’t help wondering what if your son didn’t have autism. What would his life, your life be like?
Such questions are at the heart of Bad Animals: A Father’s Accidental Education in Autism, the memoir I wrote a couple of years ago about my family. In some ways, writing the book brought me a small measure of acceptance. I don’t sweat the big stuff anymore. Wondering what it would be like if Jonah were headed for college makes as much sense as wondering what it would be like if I were heading out the door with my surfboard.
Still, the small stuff lingers. It would be nice, for instance, if Jonah and I shared an interest in sports, in particular watching sports on TV. Yes, I wish I could instill in my son my talent for being a couch potato – especially around now, Super Bowl time.
The good news is the “what-if” moments don’t linger. It helps, too, that I came up with some trick plays to keep Jonah in front of the big game a little longer than usual this year. Just before kickoff, I made a super-size bowl of popcorn and placed it strategically beside me on the couch. My thinking was: if I could just keep Jonah there until half-time, I knew he’d want to stay for the half-time show. Jonah and I do share a love of music as well as an uncanny knack for knowing the lyrics to popular songs. When he was a toddler I taught him Beatles and Bob Marley lyrics. This past year he’s got me singing along with Pink and Bruno Mars and, on Super Bowl Sunday, I got lucky: the half-time performer was, indeed, Bruno Mars. So, even though the popcorn was finished, Jonah and I sang along with the last song – “Just the Way You Are.” Then after the song was done, I hurried into the kitchen to make more popcorn.
On New Year’s Eve, my wife, Cynthia, our son, Jonah, just turned fifteen, our new puppy, Phoebe, five months old, and I gathered around our dining room table to make our resolutions for 2014. The easiest to come up with was Phoebe’s. She resolved to be house-trained by the end of January at the latest. Okay, we came up with that one on her behalf, but I didn’t see much difference between us wanting her to realize her full potential and Cynthia, for instance, wanting to receive more foot massages and back rubs in the coming year. Both are cases of wishful thinking being imposed on others. Both seem, even in the hopeful glow of the New Year, like long shots.
“And what’s your resolution?” Cynthia asked me, as if she really had to. In fact, she and Jonah could both guess mine correctly. “I resolve to be less crabby,” I announced. Even Phoebe looked skeptical.
“A lot less, man,” Jonah added.
Jonah’s new habit of referring to everyone as “man” – that includes his mother and the dog – is, I confess, one of the things making me crabby these days. Jonah is on the autism spectrum and, as a result, he’s always been more likely to pick up verbal tics (or stims, as they’re called in the world of autism) and sustain them for longer than most other kids would. I should be used to this sort of thing by now, but being called “man,” instead of daddy or dad, is driving me a little crazy. It’s like sharing the house with Jack Kerouac. I mean if Jonah has to talk like a 1950s beatnik, can’t he at least call me daddy-o?
Cynthia doesn’t like this new term of endearment much either, mainly because it doesn’t sound that endearing. Still, she reminds me to let Jonah express himself the way he chooses to. Self-expression is hard for a kid with autism so you take it where you can find it. In fact, we take it as a sign of the thing we want most for him nowadays – independence.
His mother and I were terrified the first time we sent Jonah to sleep-away summer camp three years ago, but the main reason we did it was so we wouldn’t always be around to do things for him. To a surprising extent, this plan worked. He became resolved to do more things on his own; we became determined to let him. We remain grateful to his experiences at camp for allowing him and us to see our interconnected resolutions through.
Lately, Jonah insists on going to the corner grocery store on his own whenever we are out of milk or orange juice or green beans. (What can I say? The kid is different; he loves green beans.) The first few times he left for the store I followed him, ducking behind parked cars and recycling bins, as if I were a private detective trailing a criminal suspect. Now, I still worry, but I manage to stay in the house. By the time I finally decide I must head out and find him, he’s invariably on his way back, happily swinging the plastic bag of green beans he just bought.
The other day I also let him take the dog out for a short walk as far as the grocery store. I watched anxiously from the window as Phoebe, still very puppyish, jumped all over him, but eventually they did some walking. Phoebe also did what she was supposed to – some peeing. As for Jonah, he brought her back safe and sound. I couldn’t have been prouder of both of them. When my son got back into the house, I asked him how it went as if I hadn’t been watching him every single moment. “No problem, man,” he said.
Last August, when my son, Jonah, returned from sleepaway camp with a sunburn, an array of nasty-looking mosquito bites, and a desire to water ski again (though this time for longer than a nanosecond), he also had a deepening connection to ritual. At camp, he’d taken to the morning flag-raising ceremonies, the campfire singalongs, as well as the Friday evening Shabbat dinners. I’m guessing that’s what inspired him to insist, this fall, on fasting on Yom Kippur; it was a carryover from his summer of Jewish education. His effort not to eat was, for a 14-year-old with an enormous appetite, remarkable: he made it until lunch.
But then Jonah, who was diagnosed with autism a little more than a decade ago, has always had an affinity for ritual. In fact, one of the early signs of his autism, for me at least, was his habit of lining up his toys single-file from one end of his bedroom to the other. He would have done this for hours if we let him. He could always tell, too, when I switched one toy’s place with another in the line. And, under no circumstances would he tolerate the chaos of double-file or a semi-circle. Eventually, it became clear that Jonah was a lot less interested in engaging in imaginative play with his tiny trucks and alphabet blocks and stuffed animals than he was in giving them an orderly world in which to exist. Which is, come to think of it, the whole point of ritual.
A point, I confess, I’m missing these days. After all, this was the year I deliberately passed on the apple slices dipped in honey on offer at my mother-in-law’s Rosh Hashanah celebration. It was also the first year, since my Bar Mitzvah, that I did not fast on Yom Kippur. My reasons were simple and admittedly childish: I was angry with God. The reason for that was simple, too. My beloved sister died this past August after contracting a mysterious illness and suffering for an excruciating six weeks in the hospital (Jonah came home from camp the day of her funeral) and I was determined to blame God. Childish, like I said, but once my initial anger subsided I had no need to see the world as an orderly place. I’d experienced this kind of thing before, decades earlier, when my mother and father died within two years of each other. When my sister died, I discovered the instinct to be vindictive was – like riding a bicycle – impossible to forget.
But now, it’s Hanukkah and Jonah is all in for the holiday, for the gifts, the candle-lighting, the dreidel spinning and the latkes; and I am doing my best to play along. Still, Hanukkah may be a good way for me to get back on the ritual bandwagon. As Jewish holidays go, it’s innocuous and undemanding. The emphasis is mainly on fun; the mood mainly lighthearted. No great physical, emotional or intellectual demands are going to be made on me. I also can’t help remembering that my late sister loved Hanukkah. She made mouth-watering latkes and, along with my other sister, devoted herself to finding and meticulously wrapping eight special presents for Jonah. It was just one of the many small ways she demonstrated her love for her nephew and also her acceptance of him, which was, from the moment he was born as well as the moment we learned he had autism, absolute and unconditional. So, for the sake of my son and my sister, I’ll put my holiday boycott on hold. The truth is I’ll be doing it for my own sake, too. And while I recognize it’s a lot to ask of any ritual to make the world seem less random, less cruel, it’s probably not the worst place to start.
When my 14-year-old son Jonah returned from sleep away camp this past summer it was with some surprising new interests. Which is to be expected; it’s also predictable that not all of the surprises would be pleasant ones. I’m referring to some of the songs he has been singing since he got off the bus, specifically the songs of Alecia Beth Moore, the bestselling recording artist better known as Pink. And while I’d like to quote some of her colorful lyrics, here, in this family blog, they are, unfortunately, not fit for a family blog.
Initially, this upset me. For most parents, the dilemma would be a difficult but straightforward one. They could forbid their child to listen to music they deemed in questionable taste and suffer the inevitable consequences. Their child would rebel and be more determined than ever to listen. Jonah, however, is not rebellious. In part, this is a consequence of his having autism. For better or worse, he is more likely to trust us to know what is good for him. Here’s an example of what I mean: everyone in our family is a big fan of the Canadian singer-songwriter Hawksley Workman, whose lyrics will occasionally feature so-called bad words. One song, in particular, on a CD called Between the Beautifuls that Jonah and I listened to repeatedly in the car, was objectionable, so a few years ago I informed him that he wouldn’t be allowed to play the offending track, number seven, until he was a teenager. Whenever the CD was on, he would dutifully skip from number six to number eight. But the day he turned 13, he headed straight for track seven.
Of course, a part of me knows this generational divide is not only a cliché, it’s one of the main reasons we sent Jonah to sleep away camp in the first place. The idea was for him to spend more time socializing with kids his own age and for him to get a closer look at the pop culture world in which they live, something his autism often prevents him from doing. When it comes to music, though, he’s just about caught up to his peers. But then I like to think his musical taste has always been sophisticated. I’ve been imposing my baby boomer listening habits on him for years; my wife doing the same with her affinity for folk music. He has always been able to love both. Aside from the obvious choices – The Beatles and Bob Dylan – the range can be dizzying: from Tom Waits to Pete Seeger, Steely Dan to Joan Baez.
And, now, even an old fogey like me knows, even revels in the fact that Jonah is developing his own likes and dislikes. So when he got back from camp, he and I went out and bought Pink’s latest CD, The Truth about Love. I was right by the way: it’s filthy. I was also wrong: it’s fantastic. Pink uses bad language the way any clever lyricist or writer would: to great effect. Again, I can’t quote from a song like “True Love” but her assessment in it of how the people we love invariably drive us crazy is both crude and spot on. There is also an anthemic quality to some of her songs that speaks specifically to human frailty. “Try” and “Just One Reason” are good examples. But my favorite rousing Pink song is on an earlier CD. It’s called “Raise Your Glass” and serves as a touching and empowering tribute to kids who are different, kids like Jonah: “So raise your glass if you are wrong/In all the right ways, all my underdogs…”
What can I say? I’m not only glad camp introduced Pink to Jonah, but Jonah introduced Pink to me.
It’s only been a month and a half since my son Jonah returned from sleep-away camp and I’m already feeling nostalgic for that brief August interlude when he was on his own and my wife Cynthia and I were on our own. Not just because it was a break for us from the rigors of parenting a child with autism, but it was a break for Jonah from the rigors of being parented by the parents of a child with autism. We can make for a tense trio at times. It’s not just that we all worry about one another; it’s that we all feel the weight of being worried about. In any case, Jonah thoroughly enjoyed his eleven summer days – and ten nights – away as did his mother and I. We’re all especially grateful for how wholeheartedly Jonah was accepted into his summer camp community.
But the summer is over. Fall is here and with it comes a whole new set of worries. After thoroughly enjoying camp, Jonah, who’s 14, is back at school and enjoying it a lot less. Jonah attends a special needs school, here, in Montreal and for most of the last month we have been receiving reports expressing concern about some of the problems he’s having re-adjusting to the routines and pressures of the day. What has followed is what seems like a daily series of phone calls, emails, and texts back and forth and, along with it, an escalation of worrying.
Then, the other day, Cynthia and I arranged to meet with Jonah’s teacher, his psychologist, his social worker, his behavioral technician, the school’s educational consultant, and the principal. A lot of good will and hard work went into this get-together. There were reassurances the school would keep trying to figure out what was going wrong and what could be done to address making Jonah feel better about his environment. There was also a willingness to hear whatever feedback my wife and I had to offer about what might work best with Jonah. Even so, I confess I was only listening half the time. The rest of the time I was thinking about how much I hated these meetings, all these meeting we’ve had over the years to try to help Jonah fit in, be accepted, flourish. It’s one of the things parents of so-called neurotypical children don’t always understand about being the parent of a child with autism: it seems like you can never make a decision or solve a problem without consulting a dismaying array of experts, often experts who, when it comes to the mysteries of autism, are just guessing. It’s no wonder there are times you don’t feel like a family so much as a lab experiment.
I don’t know about Cynthia but I always end up feeling the same way at these meetings: like I’m the one back in school, experiencing that familiar back to school dread, the troublemaker about to be called on the carpet for whatever it is I’ve done wrong.
What have I done wrong? And what should I have done differently? When you are the child of a parent with autism or any special needs you spend a lot of time asking yourself some variation and combination of these questions. It’s no wonder I find myself missing those relatively worry-free days Jonah spent at camp. This October, they seem so long ago.