When you’re the parent of a child with autism, you’re always bracing yourself for the endless string of theories headed in your direction. They come from health care professionals, the media, family, friends and, my personal favourite, complete strangers. One woman we barely know keeps asking my wife, Cynthia, for a sample of my son Jonah’s urine so she can run her own tests on it.
The good news about all this is it helps you develop a thick skin, though never quite thick enough. I figured out pretty soon on this journey through what is sometimes called Autismland that the reason theories about autism are so plentiful is directly related to the fact that no one really knows anything definitive about it. In my experience, that includes mental health professionals who are, when it comes to matters of the brain, only guessing.
And the guessing persists. As do the studies generating all those theories. The latest trend in studies has put the emphasis on the ability of parents to cope with the challenges of autism on a day-to-day basis. Researchers seem determined to prove, every few months or so by my count, that there is a connection between raising a child with autism or other special needs and higher levels of stress as well as greater financial and marital challenges. Of course, whenever Cynthia and I hear about the latest results of one of these so-called “well-being” studies we roll our eyes and say pretty much in unison: “No kidding.”
“They could just ask any of us if we’re stressed,” Cynthia invariably adds. “They’d save all that money on research and they could use it to take us all out for dinner and drinks, lots of drinks.”
Or, in our case, they could buy us time to be more organized. In last month’s blog, I confessed we were behind in registering Jonah for summer camp. We’re still behind. That’s because chaos – missed deadlines, unmet obligations, double-booked appointments – has become the rule in our house. I would write a to-do list of all the things yet to be done, but frankly who has the time? or the confidence that it won’t get lost in the clutter?
As defined by WhatIs.com, chaos, with reference to chaos theory is, “an apparent lack of order in a system that nevertheless obeys particular laws or rules.” In other words, laws or rules you’ll never predict or figure out. But parents of special needs kids know that already. We have learned to expect the unexpected. Feeling stressed and overwhelmed every day is just part of that. Of course, there’s an advantage to living in a state of chaos. You’re hardly ever bored. Now, if I could just remember where I put that summer camp registration form.
Last week, the Foundation for Jewish Camp hosted our biennial conference, Leaders Assembly, in New Jersey. The topic of inclusion was high on the agenda and I engaged in so many invigorating conversations with colleagues about the topic and what each camp hopes to achieve within their own camp communities. Alexis Kashar, a civil rights and special education attorney, spoke to attendees about how growing up deaf impacted her access to the Jewish community. I was particularly struck by Alexis’ description of the effect that living in a home with a family with two parents and a sibling who were all deaf had on her sister who is hearing. Because synagogue life and supplemental school were inaccessible to the family, her sister was never introduced into it. Alexis stressed to us how inclusion has a ”ripple effect” and can profoundly affect the lives of the family of the person with disability.
Just one day after the close of the conference, I read the report that had just been released from the Centers for Disease Control and Prevention announcing that the escalating numbers of Autism Spectrum Disorder (ASD) diagnosis continued to rise. According to the report, one in 68 children are now believed to be diagnosed with ASD, a group of developmental disabilities that can cause significant social, communication and behavioral challenges. It reaffirmed for me the important work that our camps can do to engage children with disabilities and their families and continuing to evolve in order to embrace them in the best way possible.
People with ASD are common and prevalent members of any group of youth or adults. The drive towards inclusion is recognition of the new normal in our lives. In the past, specialists were sought to address the particular needs of individuals who “didn’t fit,” in a hope to “help them succeed.” But the numbers tell us that this is not a fringe issue. As camps continue to accept more and more children with a variety of disabilities, I hope that staff training focused on caring for children with disabilities will be offered to all staff so that everyone can better understand and interact seamlessly with a variety of capabilities and needs. Sports specialists, swim instructors, and other recreational specialists will likely be challenged to use techniques that will engage children who are not naturally drawn to activities such as sports and who need to be coached differently in order to acquire certain skills. Visual directions, visual schedules, sensory considerations and flexibility in choice of activities will likely become a part of necessary accommodations so that camp programs can become naturally inclusive. I can say that in all of the conversations and sessions in which I participated in at Leaders Assembly last week, I was happy to see that the field of Jewish camping is moving toward a more inclusive society where all campers will be able to experience success.
The call came the other day from our son Jonah’s sleep-away summer camp. Registration was almost completed and we hadn’t signed him up yet. Was there a problem? I explained the delay was because our son was on the autism spectrum and there were additional details that had to be worked out – about how long he would be staying, about the availability of a shadow for that time period, about the cost. I was tempted to go on from there to my usual rant about how much more complicated things were when you’re dealing with a child with special needs, but I refrained. You see, after my last blog post called the “The What-if Moment,” about how I sometimes imagine how much easier our lives would be if my son did not have autism, my wife, Cynthia, strongly suggested I might want to be a little less of a grouch in future.
Her request reminded me of an interview I did some years ago with the novelist Richard Ford. He told me that his wife challenged him to write about a happy character for once. The result was Frank Bascombe, the narrator of Ford’s three wonderful but hardly cheery novels, The Sportswriter, Independence Day, and Lay of the Land. I’m guessing the Bascombe trilogy just left his wife shaking her head. “This guy is supposed to be happy?” she was undoubtedly thinking. Even so, Ford tried. And so will I.
In fact, after last month’s blog, I was reminded of an event I did in a library a few years ago. I was discussing my book about Jonah and during the Q&A, an older woman prefaced her question by saying she didn’t mean to be cruel, a sure sign she was going to be. I braced myself, but still her remarks stunned me. Do you ever wonder, she wanted to know, if you would have been better off if your son had not been born? For example, she added, your wife and you would have had more time for each other. Or maybe, she went on, you could have written more books. Like I said, I was stunned and speechless. Which is when the audience, bless them, came to the rescue. After the woman had gone on for a while longer, they basically shouted her down. I never really got to give her a good answer, but I thought about her question later and I wished I’d had the chance to respond.
I could have told her about the little things I’d miss – the fun I have making up crossword puzzles with Jonah, one of our new pastimes, or listening to music with him in the car. Or the way he chooses bedtime to conduct his own Q&A, asking his most profound and challenging questions like this recent one: “Daddy, why does there have to be yuck in real life?”
I could have also mentioned the lessons I’ve learned from Jonah – about being different, about working hard, about living in the moment. Even so, the cliché about my son making me a better person hasn’t turned out to be true. The fact is he’s a role model I will never quite live up to. He constantly amazes me with his imperviousness to embarrassment and the judgment of others, with the sheer delight he takes in everything from meeting a new person to dancing to eating a brownie. And, of course, there’s the big thing I would have missed if Jonah was not my son – fatherhood. I was over forty when Jonah was born and I never expected to have a family of my own. Before Cynthia and Jonah, I was lonely for a lot of my adult life. Since I became a husband and father, I can’t recall what loneliness feels like. There’s no way to say this without sounding utterly sappy – and without being utterly honest – but Jonah gave purpose to my life.
After the recent death of the actor and filmmaker Harold Ramis (Caddyshack, Groundhog Day), I came across a small scene he did in Judd Apatow’s movie Knocked Up. Ramis’s work was an early influence on Apatow and Apatow cast him as Seth Rogen’s father, letting Ramis improvise most of his dialogue. While Rogen, who has just gotten a woman he hardly knows pregnant, is practically pleading for his father’s scorn, Ramis can’t contain his delight. “You are the best thing that ever happened to me,” he eventually announces to his slacker son. “Now, I just feel bad for you,” Rogen says, giving the scene its punch line. But it’s Ramis’s unequivocal, automatic declaration that still stays with me. In fact, I wish I could meet that woman from the library again so I could tell her I feel the exact same way about my son.
This post is part of our series dedicated to Jewish Disability Awareness Month.
The gates of camp will open in just over 100 days, and our participants from around the country are already counting down to sunny days at their summer home. At Kutz Camp, one aspect of camp we are particularly proud of is our Mitzvah Corps program. With the recent focus on disabilities and inclusion, it makes going into our 23rd summer of special needs camping that much more special. The Mitzvah Corps program at Kutz has grown and evolved into a truly integrated, mainstreamed summer camp program for Jewish teens with Autism Spectrum Disorders (ASD). There are two aspects of this program that are really remarkable.
The Mitzvah Corps program itself has been designed to meet the unique needs and characteristics of each participant in the program, creating individualized accommodations and modifications which allow each camper to succeed. These teens enjoy every aspect of camp life, and are able to build independence and resilience by having real choices in their daily activities. They are welcomed into the community with open arms, into an environment which fosters reciprocal learning, empathy, and understanding. In this open, friendly and supportive camp community, our teens with ASD are able to create friendships, explore their identity, gain independence, and grow in many ways. Perhaps the greatest outgrowth of this program is meeting with the parents of these teens, who are often overcome with gratitude and emotion for making a normative summer camp experience available to their child.
One of our campers, diagnosed with Asperger’s Syndrome, loves learning about Judaism and is particularly interested in prayer. She finds it difficult to fit in with her peers at school and in her home congregation. At camp, she participated in the Torah Corps Major, where teens gather for three hours each morning to study Jewish text, Jewish history, and engage in meaningful discussion and debate about a variety of topics relating to Judaism. Throughout the day she chose classes to attend on the subjects of Israeli culture and Jewish ethics, and participated in a variety of other activities and experiences. On the last night of camp, during a closing circle with the all of camp, she, who is generally very quiet and prefers not to be around large groups of people, stood up and addressed the group. She thanked everyone for helping create a place where she felt that she could “unwind.”
A few days after returning home from camp, her mother shared, “My daughter came home with enormously enthusiastic reports about her time at camp. She said she loved the Torah study and Israeli culture sessions and the singing and services. I really couldn’t be happier. Her older sister commented tonight that she was so much more outgoing and engaged this evening than she was before she left. We all think this is because she got accustomed to the much higher level of social demand at camp and it really strengthened her ability and desire to engage. I can’t tell you what a giant step forward this experience is for her. We are excited about how it has enriched her life and the possibilities it opens up for her future.”
In addition to the incredibly talented and dedicated staff who help make this program a reality, what gives the program its sparkle are the Chaverim. At Kutz each teen chooses a Major, a leadership learning area that is their primary focus during the session. The Mitzvah Corps Major is comprised of neurotypical teens that learn the skills of special needs inclusion, and are able to work as peer-engagers, helping with the integration of our special needs population into mainstream camp culture.
Not only are we able to provide a safe, nurturing, camp experience for our teens with ASD, we are also able to train the next generation of compassionate young people who will choose to continue this valuable work of accessibility for special needs populations as they move through college and into the work world. Fostering the next generation of advocates who will stand on the shoulders of all of those doing remarkable work around disabilities and inclusion today is one example of our commitment to a vibrant and just Jewish future. We are so proud of our hundreds of alumni of this remarkable program.
Find out more about URJ programs designed for special needs populations here.
This post is part of our series dedicated to Jewish Disability Awareness Month.
Each year the most talented dancers and performers at Cedar Lake Camp would audition to compete for first place in a lip-syncing contest in their annual talent show. Kids would plan in the off season, and work all summer to be the best. Last year, however, the camp was challenged to change the show. Cedar Lake had recently welcomed the oldest campers from Round Lake Camp, another NJY camp for children with learning differences and social communication disorders, in a model of inclusion – and these new campers were encouraged to participate as well.
Some of the staff was afraid of what would happen. The new campers could not do the complex dance moves and choreography which was the hallmark of this event every summer. How would the other campers react to them on stage? Would the campers with disabilities feel successful and have a positive experience?
The group was placed in the middle of the show, amidst all of the other competing teams. One by one the acts performed – rock, pop, and hip hop. Each of the competing acts was amazing and received enthusiastic applause from their bunks and fellow campers. Behind the scenes the tension mounted awkwardly as the new group lined up to take the stage.
As these campers with disabilities walked up the stairs, their counselors cheered them on enthusiastically, and the 700 onlookers watched quietly. The group took their positions. What followed was magical.
Each camper made his moves in his own way. Each lip-synced with enthusiasm and joy. Some body motions were exaggerated. Some facial looks or ticks were clear. The rock anthem, “I want it that way” blared over the speakers and the crowd began to cheer. Teenagers who didn’t know how to feel when they took the stage couldn’t help but get swept up in the pride of the moment. By the end of the song, 700 campers roared to their feet as one. It was the only standing ovation of the day. Those campers were super stars.
No, they didn’t “win” first place. But yes, they won the day. And for that moment, everything we want in a camp came true for every single camper who was there.
This post is part of our series dedicated to Jewish Disability Awareness Month.
When I was seven years old, I started going to a Jewish overnight camp on the West Coast. I honestly think that had to be the worst experience of my life, but not for the reason you may be thinking. The only reason I didn’t like it was the fact that I have autism. Bottom line, I didn’t fit in. Too bad my family decided we should all go for the next two years. (My mom, who is a rabbi, served on faculty there. Even though they tried their best and my mom was up at camp, things were still really terrible.) However, after moving to Pennsylvania, my family and I learned that there were Jewish camps for kids on the autistic spectrum. My family decided to send me to Round Lake Camp which was also a Jewish sleep-away camp. After going for my first year, each summer was all about camp.
Now, if you have a brother, sister, or child who has autism, you probably know that new experiences cause a lot of anxiety. So, for example, if the simplest bee is scary to them, they might be having a nervous break-down the entire car ride wondering if they’ll be tons of bees at camp. In my case, on the drive up with my dad, he calmed me down by telling me the three main purposes of camp and the importance of each. The first important part of going to a Jewish camp would be that you meet new people and make some friends. Considering my lack of friends, this was a big plus. Also, because this is a Jewish camp, you won’t be the minority anymore which also means that you get to do Jewish activities that aren’t available anywhere else such as Israeli dancing. One of the things I did enjoy at the west coast camp was Israeli dancing and it was something I really missed.
The next big purpose is getting to try new things. This would include new foods such as tomato soup, new activities such as high ropes, and water activities such as the huge water slide. Out of all those things, my favorite wouldn’t be an activity, but the fact that I get to stay in a cabin with all my “camp buddies”. At my first camp, however, because I didn’t fit in, I didn’t feel comfortable in my bunk. While at Round Lake, everyone in my bunk accepted me and helped me when I was feeling sad.
After my first year, Round Lake was combined with another camp called Cedar Lake. It was also a Jewish camp, but was not for kids on the spectrum. That wasn’t really an issue because we really didn’t come into contact with the Cedar Lake kids that often. Except for Color Wars which is a big competition where both camps were combined and split into four groups. After being split, you compete in different activities. Almost every camp does this activity and I never really liked it.
The last and most important purpose of going to a Jewish camp is what my dad told me before my first year at Round Lake. That would be the ability to learn more about yourself. In other words, that means finding new experiences and finding what you are good at such as sports and science. I learned that I am good at a game called Ga Ga. It’s a game played in an octagonal court with a rubber bouncy ball. The objective is to use your fist or open hand to hit the ball towards the other players (knees or below). If the ball does hit them (in the knees or below), they are out.
All in all, going to a Jewish camp is a great experience because of the friends you’ll make, the new experiences you’ll have, and the memories you will have created. As we say at Cedar Lake/Round Lake, this is “A Home Away from Home.”
February is Jewish Disability Awareness Month (JDAM), which brings a topic that is very important to us at the Foundation for Jewish Camp to the forefront of conversations all over the Jewish community. JDAM is “a unified initiative to raise awareness and support efforts to foster inclusion of people with disabilities and their families in Jewish communities worldwide.” To further the effort, we are running a series dedicated to discussing disabilities at Jewish camp this month.
Kicking off the series is a round-up of some of the most powerful posts by Joel Yanofsky, one of our resident bloggers and father to Jonah, a great teenager and camper on the autism spectrum.
Stay tuned for posts by camp directors, experts in the field, former campers, and more.
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.