BLOOM Winter 2009

O BL OM E V E R Y C H I L D D O E S I T I N T H E I R O W N W AY

winter 2009

Perfectly imperfect L IF E SKILLS

‘The biggest disability we have is low expectations’ RESEA RCH HITS RESEARCH H ITS

What stresses parents?

TRA IL BLAZER TRAIL BLA ZER

Laughter is a ‘spark of light’

PA R E N T I N G P O S S I B I L I T I E S

PA REN T TA LK RENT TALK

WINTER 2009

BLOOM BLOOM is a how-to magazine on parenting children with disabilities.

BLOOM gives voice to the joys and challenges of special-needs parenting by combining firsthand family insights and the best professional advice.

BLOOM family We invite you to send us a digital photo of your child “in bloom.”

E-mail to lkinross@bloorview.ca and we’ll feature as many as possible in our summer issue.

We believe that every child blooms in his or her own unique way.

BLOOM is published two times annually and mailed to Bloorview families and parents and professionals who ask to be on our list.

BLOOM blog • Connect with families and share experiences and ideas • Read longer, in-depth stories, guest blogs and interviews • Link to news stories and resources about disability.

CONTRIBUTORS PUBLISHED BY: Bloorview Kids Rehab WRITER AND EDITOR: Louise Kinross ART DIRECTOR: Sara Purves PRINTER: Quality TIme Graphics Inc.

ABOUT BLOORVIEW KIDS REHAB Bloorview Kids Rehab is Canada’s largest children’s rehabilitation hospital. Our vision is to create a world of possibility for kids with disability. We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life.

http://bloom-parentingkids withdisabilities.blogspot.com

BLOOM e-letter Every month we send you an e-blast with links to the latest blogs and other timely news.

DISCLAIMER Articles in BLOOM are not a substitute for professional medical advice. Resources listed in BLOOM do not necessarily signify endorsement by Bloorview Kids Rehab. Where appropriate, please consult your physician.

CONTACT US EMAIL: lkinross@bloorview.ca TEL: 416.424.3866 or 800.363.2440 FAX: 416.425.9332 MAIL: Bloorview Kids Rehab 150 Kilgour Road, Toronto, ON M4G 1R8

To sign up, go to www.bloorview.ca/bloom.

On the cover Avery is the first to offer a hug, writes his mom Jennifer Graf Groneberg in Perfectly imperfect, page 6. Here, he shares one with mom. Photo by Nicole Tavenner.

inthisissue

features

PARENT TAL K

LIFE SKILL S

RESEARCH H ITS

TRA IL BLA ZER

06 Perfectly imperfect

16 ‘The biggest disability we have is low expectations’

22 What stresses parents?

27 Everyone in the pool!

24 Science roundup

18 What’s cool at school won’t fly at work

26 A new voice – and a measure of independence

08 Breaking windows with my son 10 To infinity and beyond

28 Seen and heard 30 Laughter is a ‘spark of light’

ROL E MOD ELS 13 Olympic torch relay caps year for comeback teen

32 Keyboard nightmares?

14 In sync

fresh

departments

H EL PING HANDS

F ROM THE EDITOR 04 My #1 advice

20 ‘This is Poppy.’

‘She’s my autism service dog.’

F EED BACK

A RT WORK S

BOOK SHEL F

04 Your letters

34 New titles 33 Turning the lens around

ON LINE 35 Websites, blogs and facts

bloom ~ winter 2009 ~ 3

fromtheeditor

My #1 advice If you haven’t visited the BLOOM blog we launched in May – please visit http://bloomparentingkidswithdisabilities.blogspot.com.

The blog allows BLOOM to reach you in a timely way and has been a tremendous source of new stories, guest blogs and interviews with parents from across Canada and the U.S. I was recently interviewed about parenting a child with a disability by a Psychology Today magazine blog called Disabled and Thriving. It’s written by Melissa Blake, a journalist who also has a rare genetic disorder.

One of the questions she asked was: “What is your #1 piece of advice for parents of children with disabilities?”

yourletters u GOOD ENOUGH

when he was a baby. Dave has done remarkable things in his life.

Thank you from the bottom of my heart for your thoughts on “The Enough House (June 2009).” I have made similar bargains about my daughter's health and development. “If only she could... then I will be grateful, satisfied and happy.” Yet she has done so much more, and I still don't feel satisfied and happy every day. Thanks for reminding me about the most essential moments of life.

Alison Ouellette, Windsor, Ont. (editor’s note: The DVD My Life, My Choice features Alison’s son Dave and is available through Inclusion Press).

Elliette Portal-Stanley, online

I wanted to congratulate you on your very profound editorial letter.

Accepting our kids for what they offer us and the world takes time.

Some families get there and some families continue to search and truly miss out on their children’s gifts. As my son Dave turned 35 this year, I reflected on all the things he has done, especially when the docs said “forget about him, put him in the institution”

4 ~ bloom ~ winter 2009

I found your words so important for all parents to remember. I would like to have “The Enough House” story framed and put up in our clinic area for everyone to see. I work in pediatrics and try my best to support parents with the news and path of parenting a child with special needs.

Grace Koehler, Social Worker, Glenrose Rehabilitation Hospital, Edmonton

The article you wrote, “The Enough House,” moved me to tears as it brought up so many memories and was so well written! I feel like it is the biggest lesson I have learned coming from 18 years of parenting two kids with issues. What a fabulous article!

Raquel Rozenberg, San Diego

I love your story, “The Enough House.” It took Claudia and myself as well such a long time to get to that point. I read the whole magazine and I have to tell you, it’s absolutely beautiful. I have no doubt that families that are receiving this are reading it and are blown away by it.

Brett Langill, Mississauga, Ont.

I used to have a trick when Max was small called “The Desert Island.” When I felt overwhelmed because of his differences and lack of progress I imagined just he and I on a desert island and I asked myself: “Would you be unhappy if it was just Max and you?” Of course I answered myself each time with “No – I would be very happy as I love him so much.” Your “Enough House” story reminded me of that time in my life. My son is enough.

Katharine Harrison, Toronto, Ont.

Here’s my answer:

on the things that bring you and your child joy. Live in the moment. Treasure your time together.

Early on, I used to feel I couldn’t live if my son Ben didn’t walk, talk, grow or do any of the other things most people take for granted. That created an incredible amount of anxiety and over-focus on trying to prod his development. Nothing was ever good enough and we had no perspective.

My #1 piece of advice would be to know that love for your child will enable you to cope with whatever comes your way. Let go of trying to “fix” your child and open your eyes to the richness of what is already there. Recognize that life is short and tenuous. Focus

u SELF INJURY

My experience over 38 years supports what Felicia Jervis has to say (“When children hurt themselves,” June 2008) in the work I have done with both children and adults with disabilities. “There is a lot of good research to show that children will continue to self-injure when something positive follows the behaviour," writes Dr. LaRose in her Talk back column “A different approach (Dec. 2009).”

There may be research showing this, but I would need to look at it and see what the context was, know what understanding existed about the “reasons” for the behaviour. Children with disabilities often experience profound rejection early in life, become deeply wounded by how others see and thus treat them, often in negative role stereotypes.

The “reasons” are therefore not

When Ben was born, I didn’t have the confidence to know that love would enable me to accept him – whatever he could or couldn’t do, no matter what.

That realization has been both surprising and liberating.

Best wishes for the holidays!

always obvious or knowable unless one sees the larger issue of societal devaluation.

David Yeiter, Director of Quality Enhancement and Training, Monadnock Developmental Services, Keene, New Hampshire

Re “When children hurt themselves,” June 2008. I guarantee that when we as adults are feeling “out of control” (and we all do) that a warm cup of tea, a sweet, a hug from a caring individual does not teach us that feeling out of control is the way to be, but that it is okay to feel this way. Greater problems arise when we as human beings choose not to validate an individual’s needs, wants and desires.

Caroline Carrington, online

u GENERAL PRAISE

What a fantastic resource! Would love to subscribe! I’m a mom of a 5-year-old autistic boy and finding good resources like this is a goldmine! Keep up the good work!

Jennifer Cluff, London, Ont.

I checked out the magazine and your blog online and they are both fabulous – a great resource for parents.

Amy Baskin, Guelph, Ont. Author of More than a Mom and the special-needs parenting blog at Today’s Parent

Keep up the HARD work. Families like us appreciate it.

Allison Mylymok, Sechelt, BC

I always find the articles really engaging and easy for families to read.

Margaret Spoelstra, Executive Director, Autism Ontario

u Comment on these letters or send your own to lkinross@bloorview.ca

bloom ~ winter 2009 ~ 5

parenttalk

perfectlyimperfect

By Jennifer Graf Groneberg

When my middle son Avery was diagnosed with Down syndrome at five days old, my Dad said, "Ah, well. He'll be one of the better ones. He'll be the best." It felt like a kindness, and I remember being buoyed by the thought.

He may have Down syndrome, but by God, he'll still be the best.

Fast forward six months and Avery had his own rolodex of phone numbers – for a speech therapist, a physical therapist, a family support specialist, a pediatrician and our family practitioner. His contact list also included an occupational therapist, a doctor of chiropractic, a craniosacral therapist, a naturopath, and a healer.

We had "therapies" every day, sometimes twice a day.

When we weren't with a specialist, I was working on Avery's "program" at home. Every minute, every movement was an opportunity to engage him in his development and expand his potential. But the idea that I had control over it all made me a little crazy, and I lived in a perpetual state of worry – was I scheduling enough, teaching enough, doing enough?

Should I be doing more?

Every three months, Avery was evaluated. The affect of constantly comparing him to "normal" left me feeling as if we lived in Deficit Land. We were always behind, of course, but the tougher question was, by how much? And were we gaining, or losing ground?

It all came to a frenzied head one afternoon when my friend Emily stopped by. She reached out to hold 6 ~ bloom ~ winter 2009

Avery (she’s a great fan of his), and instead of leaning into her, as was his way, he tucked his head into my neck and burst into tears.

‘He has character. He has integrity. He knows what he’s about. These are the things that are harder to gauge, these things are harder to quantify. But these qualities are what make Avery a unique and whole human being.’

After running through all the usual reasons for crying, an idea born of mother's intuition came to me – Avery was burned out. At this age, my other boys thought the world was made up of mommies and daddies; Avery's world, to him, was made up of people who wanted something from him. In a word, therapists.

The realization came to me with great sadness. This wasn't what I wanted for my son. If this was where being the best had gotten us, it was time to rethink my goals for him, and for me as his mother.

I know we need to measure; we live in a measuring world, and many of his services were dependent upon him having deficits, things like: at twenty-eight months, he takes a few steps, here and there, but he is not really walking. He says a few words on occasion, but he is not really talking. These are things his brothers did by twelve months. It's a huge gap, if this is what we measure it by.

Photo: Nicole Tavenner

But how to measure Avery's love of books? Or the fact that he is the only one of my children who can keep a musical beat? He has a great social intelligence – Avery is the first one to sign ‘sorry’ when someone is feeling wronged or sad. And Avery is the first one to recognize when someone needs a smile, even if the man is tattooed and wearing a Hell's Angels jacket. Avery is the first one to offer a hug.

He has character. He has integrity. He knows what he's about. These are the things that are harder to gauge, these things are harder to quantify. But these qualities are what make Avery a unique and whole human being. It's not the measuring that's wrong, it's what we choose to make important. And I am his guardian, his protector. It's up to me to make sure his

life has meaning and balance, a fact that I had overlooked in my quest to be the best.

And so Avery's rolodex is tucked away in the cupboard, along with the cookbooks I never use, the scotch tape and the rubber-band ball and the kitchen twine.

He has physical therapy once a week because he needs it, he has music class once a week because he loves it, and the rest, well, we've developed a new plan. We're leaving our schedule open, so that we have plenty of time to build blanket forts, bake cookies, and eat snow. I am giving my son his childhood back, and if it means we drop right out of the race, so be it.

Jennifer Graf Groneberg (above with family) lives in Montana and is the author of Road Map to Holland: How I Found My Way Through My Son’s First Two Years with Down Syndrome, a memoir that provides practical insight and emotional support to parents of children with special needs. Visit www.jennifergrafgroneberg.com.

bloom ~ winter 2009 ~ 7

Breaking windows with my son 8 ~ bloom ~ winter 2009

parenttalk

By David Sexton One of the things I like most about September is running with my son in the morning. The air is a little cooler and if I time it right I’ll catch the light just as it’s dawning over the Hudson River. And I’ve got my son to help me with the timing – he’s like an alarm clock that won’t take no for an answer.

“Ha-aye-yah! Clatter! Thump!” That’s the sound of my little guy on a good morning.

It means he’s throwing his toys out of the crib with his right arm. And when I hear that ruckus I know that his tosses have cleared the rugs and pillows around his crib and made it out onto the hardwood floors. He can't use both hands – his cerebral palsy prevents this – but he’s learned the trick of throwing discus style across his body. With this method he’s getting some serious distance. He lets out terrific laughs as he makes these throws; kind of like a baby giant hurling rocks. It makes me laugh too.

‘I feel, when I’m like this around him, that we’re just two boys together.

I’m not old (or too heavy) and he’s not impaired – we’re just boys running along a river.’

Today was one of those good days and I managed to get myself out of bed and up the stairs before his playful mood started to flag. The clock said 5:45 a.m. and a dim light was just coming in through the windows.

Photo: Carly Ringer

“Go!” I said before starting my run, pushing him ahead of me in the jogging stroller. I try to use the run to practise words with him.

On a good day like today he’ll babble and look all around him at the sights and sounds of the city in the morning: delivery trucks, other runners, police and busses. I can see from his movements in the carriage that he wants to get out and play with everything; he looks like a player leaning off the bench, eager to get into the game.

I wonder, especially as I run, about that right hand of his. He loves to use it so much. I wonder if he’ll find an activity that will give him some pleasure some day.

I can’t help but notice how much he could do with his good arm alone.

Other people have noticed it too.

“Wow, what an arm,” the technician said to me at the hospital the day of my son’s MRI. He was one of the team of people who prepared my son for the exam. After setting up the equipment, he stayed to help me hold my son while the doctors gave him anesthesia. He was trying to catch my son’s arm, which was darting around quicker than a bat.

“Gonna break windows with that arm for sure. Could pitch with that one. Yeah, sure could,” he added with his brisk city accent after catching his arm and gently settling him down.

Those words were a comfort to me, not only because it was good to hear a steady voice when I was upset, but also because those words had come so naturally – they were truly meant. It made me think of all the things my son could do in the future. It gave me hope when I was feeling low.

We spend so much time working with my son on his weak side – the most outward sign of his cerebral palsy. Therapy and exercise are part of every day for him. Every doctor’s visit is focused on that side. So much emphasis on what’s wrong or missing. It gets to be overwhelming.

And even more than that is the feeling that his strength needs to be held back to allow that weak side to develop.

“Let him free,” a part of me yelled out quietly for that month he had to wear a brace. “Let the kid throw something. Let him be happy.”

It seemed unfair that he has to work so hard at just being a kid. It made me think of all the other kids that have similar or greater handicaps. I wanted to break him out of that jail – to set him free.

But I know what’s right too. I know that the constraint therapy is the right thing to do. It’s already made an impact. And as his left side gets stronger and more relaxed, his right arm is growing even more strong and agile. I know the therapy helps.

I took him up to Castle Point today. It’s a hill in Hoboken that overlooks the river. There’s a great Continued on page 32 bloom ~ winter 2009 ~ 9

To infinity and

beyond!

By Louise Kinross

10 ~ bloom ~ winter 2009

parenttalk

He caught his first fish. He climbed up a 20-foot ladder in harness and roared down a zip line – like Tarzan – giggling all the way. He paddled a canoe and got a black eye when his sailboat tipped. He rode Velvet and Jack. In a speed boat, the wind took his breath away. He explored an island and collected bugs. He made friends. He made friends!

The ordinary rites of summer for most kids, but a new world for my son Ben, who just spent his first week at overnight camp at age 15.

Ben has multiple disabilities, and we’ve never been able to find a sleepover camp that could meet his needs. Many are targeted to typical kids and aren’t physically accessible. Others are open only to kids with a specific disability.

Ben went to Camp Kennebec on Bull Lake in Ontario, a “non-competitive, inclusive” camp for children with attention and learning disabilities, behaviour issues and autism.

He was the first camper with physical disabilities who didn’t speak, but they were willing to make it work for Ben, who attended with a worker fluent in sign language.

The camp isn’t fully accessible, so we borrowed an allterrain wheelchair from Bloorview and they put Ben in the cabin closest to the eating hall and lake. The boys in his cabin were significantly younger than him, but closer to his size (he’s tiny) and developmental level.

I was a nervous wreck when we dropped him off – the first time we’d been separated in six years. But soon I received an e-mail, and then another, from Ben’s worker Coco, and what I read astounded me.

Everyone has taken Ben under their wing and have been going out of their way to include him.

Ben is a different person while riding. I think he really loves being up high.

Today he…went down the zip line. Getting him up there was orchestrated by no less than five Camp Kennebec staff with me down below shouting up.

After that we went for a super fast speed boat ride. I don’t think my photos can possibly show you just how much he loved it.

Yesterday we were on the sailboat, when a big gust of wind took over and we tipped! We are all okay but Ben did get a goosebump on his forehead. He was cracking up laughing.

Today’s was Eric’s birthday. He is in Ben’s cabin. Ben was so excited about the party (ice-cream sundaes and cake).

Ben has earned two merit points.

We’re taking a trip to an island tomorrow. The wheelchair probably won’t work so one of the stronger staff is going to piggyback him up.

Ben went fishing and after many seaweed ‘fish,’ he caught a real sunfish. He was so excited. bloom ~ winter 2009 ~ 11

Tonight at announcements I got a little emotional.

Ben told me he wanted to tell everyone about catching his fish. He stood up and I knelt in front of him to interpret. He clearly signed: “Today I go boat to island. I go fish and I catch fish. Me happy!” He got a big round of applause and Donz and I started to cry.

I explained that I was very moved because I love seeing more of Ben expressing what he is thinking.

When we arrived to pick Ben up, every camper had a story about him. “Ben was my little buddy,” said one, putting his arm around Ben. An older camper proudly described how he “saved” Ben when the sailboat tipped.

Coco caught a beautiful moment on video of Ben on the trampoline. He doesn’t have the strength or coordination to propel himself up and down, so he likes to lie down while the others bounce. Ben giggled insanely as a teenager bounced higher and higher and higher. The teenager, who has a developmental disability, then turned to a counsellor and yelled, beaming with satisfaction: “Look, I’m helping. Look, I’m helping.”

Camp Kennebec surpassed all of my expectations and dreams. The first thing the counsellors said when we pulled up was: “Can he stay for another week?”

Another staff member talked about how much the staff and campers got from Ben – seeing him succeed at so many things despite great obstacles.

“If I could give Ben the most wonderful surprise,” one camper said, “I would give him a voice.”

It wasn’t apparent to this camper, but Camp Kennebec had already done just that: for one glorious week, Ben was successful, included and heard.

12 ~ bloom ~ winter 2009

rolemodels

Olympic torch relay caps year for comeback teen When Gavin White carries the Olympic torch in December, it will cap an astonishing year in which the 16-year-old relearned to walk and run after a life-threatening illness left him paralyzed and on life-support.

“Not many people get to take their first steps twice,” says the Grade 12 student, recalling the seven months he spent at Bloorview learning how to roll over, sit up, stand and finally walk.

The experience has given him a new urgency to go after his dreams, he says. “I want to get the most out of life that I can.”

In August of 2008, Gavin’s arms and legs became numb and weak and he began falling down.

Six weeks later he was diagnosed with Guillain-Barre syndrome: his immune system was attacking the nerves that carry signals between his brain and body.

Gavin spent four months in an acute-care hospital where the weakness moved to his breathing muscles, causing his lungs to collapse. Doctors said it was the most severe case they’d seen. Although most people fully recover from the syndrome, it can take years.

“When I arrived at Bloorview in January, I couldn’t move, walk or feed myself,” Gavin says. Rehab involved intensive stretching and strengthening exercises in physical and occupational therapy to regain the abilities he’d lost.

While at Bloorview, Gavin – an avid hockey player and cyclist – says he never questioned why the syndrome struck, felt sorry for himself, or doubted he’d recover.

“I had a ‘bucket list’ of things I wanted to do before I die, so I kept putting things on the list,” he says. With a map on his hospital room bulletin board, he plotted out with pins where he’d go on his “Europe trip,” then began plans for backpacking in South America.

Other items on the list included climbing Mount Everest, planting trees and graduating high school.

“It gave me something to look forward to. I was making the list a goal to get to when I get better.”

Gavin earned the nickname “child whisperer” for his ability to soothe young patients and coax them from their rooms to the Bloorview School. He also kept his mind busy by planning outings for other teenagers hospitalized at Bloorview, working with recreation therapists to arrange trips to the museum, hockey games, movies and the mall.

Gavin was using a wheelchair and cane when asked if he’d carry the Olympic torch in June. “Running wasn’t something we were even thinking about. But in the back of my mind, I thought, ‘it’s another goal.’ I’m grateful to the Royal Bank of Canada for giving me this opportunity,” he says, noting RBC and Coke are sponsoring the relay. He accepted and immediately texted his mom Brenda: “Mom this is so awesome!”

When he carries the torch in Guelph, Ont. – near his hometown Elora – Gavin says it will signify the end of his horrific illness. “One year ago I was lying in bed and couldn’t move. When I carry the torch, my journey with Guillain-Barre is over.”

Then it’s time to start ticking other adventures off the bucket list.

bloom ~ winter 2009 ~ 13

rolemodels

in sync Lauren Daly, 18 (left), and Nicole Flynn, 16 (right), are synchronized swimming duet partners who compete across Canada. Synchro is a graceful and gruelling sport that combines swimming, dance and gymnastics.

In 2008 Nicole and Lauren qualified to compete in the Ontario-Quebec Cup against able-bodied swimmers. Nicole has Down syndrome and Lauren has cerebral palsy. “They’re disabled,” parents whispered when they first saw them at the meet. “That changed to: ‘Oh my, look at them!’ as the girls started swimming,” recalls Nicole’s mom Kathy.

Photo: Brenna King

14 ~ bloom ~ winter 2009

In addition to training up to 17 hours a week on land and in water, Lauren is a lifeguard and Nicole is taking her Bronze Cross. They both have their G1 driving permits.

We talked about disability, what they’ve gotten out of synchro and future goals.

BLOOM: What was your greatest challenge growing up with a disability?

created an awkward walking gait for me. I think of it as a full physiotherapy session because we do everything – stretching, running, lengths and our figure drills. I gained a lot more control over my muscles and improved my gait. You learn how to move your body in a way that’s comfortable for you. I have no lower-body strength, and without synchro I never would have developed the strength to become a lifeguard.

Nicole Flynn: I don’t have a disability. I have Down syndrome, but that doesn’t keep me from doing things.

BLOOM: Some people might think synchro would be a particularly difficult sport for people with disabilities. Was it?

Lauren Daly: When people look at you, especially in elementary school, and see you as different, and you have to come to terms with what people think of you and how to react. My parents and friends have been very supportive and I’ve also been involved in things like synchro and volunteering that allow me to highlight my strengths.

Nicole Flynn: Synchro is a difficult sport for everyone. It was hard to learn to stay underwater without breathing. Remembering the routines was also a challenge.

BLOOM: What practical advice would you offer other kids going through similar challenges?

Nicole Flynn: You can learn new things. It may be hard, but keep trying. Don’t give up!

Lauren Daly: Get involved in activities with people who share the same interests. That way, people who meet you don’t immediately think of your disability, but of what you can do. Your interests are a common ground. You have to keep going. It may take you longer or you might have to do something differently, but if you go in with 100 per cent, eventually you’ll get it. A quote I really like is: ‘The greatest satisfaction in life is doing what others think you can not.’

BLOOM: What have you gained from your involvement in synchro?

Nicole Flynn: My muscles are stronger and more flexible. My memory is stronger too. I have met a lot of people and have friends at synchro. I have also learned it takes a long time to learn to do things well. You have to focus and ‘want’ to change your mistakes to do things better. Sometimes the workouts are hard. I get tired and I don’t want to do anymore, but I push myself to keep going and not stop. I’m not allowed to touch the wall. I have to keep trying.

Lauren Daly: I joined synchro because my bones were growing faster than my muscles, which

BLOOM: What have you gained from your friendship and as athletes who swim together?

Nicole Flynn: Lauren and I spend time together. We talk, or we go to the movies or have dinner. I like to swim the duet with Lauren because we encourage each other. It’s more fun to do a routine with a partner. We laugh and figure out a way to fix our problems. Lauren and I have trouble counting the beats so we tap each other on the shoulder as our signal.

Lauren Daly: Nicole and I are a team and we’re very, very supportive of each other. We laugh and we have fun. Being in a duet with Nicole has given me a team experience I wouldn’t have had otherwise.

BLOOM: What are your goals for the future?

Nicole Flynn: I’d like to compete again at the Ontario-Quebec Cup and see how well we swim our routine together. I’d like to have a job and travel, and buy a convertible so my dog Cody and I could drive across Canada together. I might go to college to study drama and vocal. Cody and I are going to live in our own apartment and I will do my own cooking, shopping and laundry.

Lauren Daly: I’m going to France as an exchange student in February. After that, I’d like to go to university and become a French teacher. I’d also like to see synchro swimming put into the Paralympics and to promote better awareness of the sport as a whole.

Nicole and Lauren train at Variety Village in Toronto.

bloom ~ winter 2009 ~ 15

‘The biggest disability we have is L O W E X P E C TAT I O N S ’

Joe Steffy, 23, owns Poppin’ Joe’s Kettle Korn in Louisburg, Kansas.

Joe, who has Down syndrome and autism, communicates with gestures, pictures and a voice device, and is a shining example of how a young adult with significant disabilities can own and operate a business.

BLOOM interviewed Joe’s mother Janet. She and her husband Ray, retired farmers, have a message of hope for parents who fear their children won’t find work as adults.

BLOOM: When Joe was in high school, what were your hopes and fears for his future?

Janet Steffy: When Joe was 14 the transition team came into a meeting with a plan already put together: Joe would live in a group home as an adult and attend a workshop. Period. There was no discussion. Our nightmare was that because Joe is high energy and doesn’t sit still, he’d end up somewhere sedated and isolated.

BLOOM: How did you respond to the plan?

Janet Steffy: I was angry. But as parents, we can internalize these negative messages and become angry and bitter, or we can take positive steps to act 16 ~ bloom ~ winter 2009

on our child’s strengths and build on them. The biggest disability we have is low expectations, and that’s greater and more disabling to Joe than any disability that he was born with.

BLOOM: How did you get the idea that Joe could run a business?

Janet Steffy: Ray took a Partners-in-Policy-Making class offered through the Kansas Council on Developmental Disabilities. One of the speakers showed us how a person with significant challenges can operate and own a business – and still remain eligible for Medicaid supports. For Ray and me, it was like a light at the end of a dark tunnel. He showed us a model, and that’s what we built.

lifeskills BLOOM: How did you come up with kettle corn?

Janet Steffy: Our family went on an Alaskan cruise when Joe was 14 and at a farmer’s market, Ray saw a long line of people waiting for kettle corn. We had never heard of it. Ray saw the different parts of the popping process and his mind started turning. After talking to the owner we purchased used equipment locally and started what we called a ‘Can Joe work?’ project. We set up in the driveway out of the garage and started popping and developing a product we were satisfied taking to the public.

BLOOM: How hard was it for Joe to learn the ropes?

Janet Steffy: Joe learns by watching, he will do exactly what you do, and that is his strength. There are many processes in popping: setting the equipment up; filling the raw material into the containers to pop; measuring the ingredients and putting them in the kettles; stirring; dumping the kettle; sifting; letting it cool; bagging it and sealing it. As a result of his autism, Joe is very repetitive, exact and precise, and that was something to build on.

BLOOM: Is Joe interested in the operation?

Janet Steffy: Joe is interested in many things, and as long as it’s something he can be active and moving and busy at, he’s busy. It took him a year or two before he got into the actual popping. We have a rule that if Joe owns the business, Joe picks what he does. If he hires you to help, and says “Today I’m bagging,” and you’re doing the bagging, you do what he was doing before.

BLOOM: Does Joe have a support person?

Janet Steffy: He has a support worker and his dad is the manager. Joe works five days a week, from 9 to 3.

We have a licensed manufacturing site in our walkout basement. Joe doesn’t live at home anymore – he rents his own small home and a support worker lives with him. He’s a taxpayer – isn’t that cool?

BLOOM: Where do you sell the kettle corn?

Janet Steffy: In the summer he works at festivals and events and year-round he stocks six retail stores that buy his products every week. He has five flavours.

BLOOM: How challenging has it been for you to support Joe in the business?

Janet Steffy: Yes, we’re retired. It’s a mindset. We have to do it. We supported Joe’s sisters and brothers, doing the extra things that made it possible for them

to do sports or music, and we’re committed to doing this for Joe as long as we can. It does take an investment, but as a parent, you can spend your energy fussing and fuming because professionals don’t see potential in your kid, and you have a kid sitting around with nothing to do, or you can use your energy in a positive way. Then you’re happy and your son or daughter is happy.

BLOOM: How did you finance the business start-up?

Janet Steffy: Joe received over $20,000 in grants through national and state programs, including Social Security Administration’s Plan to Achieve Self-Support Program (PASS), Vocational Rehabilitation and the Kansas Council on Developmental Disabilities. We had to submit a five-year business plan.

BLOOM: What impact has the business had on Joe? Janet Steffy: I wish we had a before and after picture. He used to be a young man whose shoulders drooped, his chin was down and he was pretty sombre.

Now he stands tall, with a smile on his face. He knows he’s contributing.

When he’s out in public at a festival he loves stirring the kettle while people watch – he loves being Poppin’ Joe. He loves the identity and feeling of belonging with the other vendors he’s gotten to know at the festivals over the years. I love it when he goes to the bank and the clerk counts the money out with him. Joe knows that because he works he has his own small home. He has a golf cart and he knows it’s because he works. We have four to six part-time people who come in to help and Joe pays them – he signs the cheques and gives them the money. People look at him differently.

BLOOM: What advice would you give other parents concerned about their child finding work?

Janet Steffy: Commit to your dreams. It won’t happen if you don’t step up to the plate. Look at your child’s strengths and capacities and build on them. Help them find a business they love. So often at meetings we’re reminded of everything our kid can’t do. It’s so negative. Remember that the professionals who tell you what your child can’t do won’t be players once they’re out of school.

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What’s cool at school won’t fly at work

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lifeskills DOES YOUR TEEN HAVE THESE JOB SKILLS? Teens with disabilities are less likely to work part-time and in the summer, or to volunteer.

As parents, we may think of these activities as extras that can’t be squeezed in with school, therapy, personal care and appointments. But without early work experience, our children may lack basic social skills that are a must for success later on.

“Some of the youth we work with don’t even say ‘hi’ or ‘bye’ to people or make eye contact,” says Carolyn McDougall, occupational therapist with Youth@Work, a Bloorview program that includes skills training, work placements and job coaching for teens with disabilities.

Part of the problem is that teens who don’t have work experiences may act in a way that’s “cool in school,” but unacceptable in the workplace, Carolyn says.

“Behaviours that help you fit in at school – not wanting to look ultra keen, sitting at the back and yawning, talking while others are talking, not greeting the teacher – are opposite to what’s needed at work.”

Youth facilitators Dolly Menna-Dack and Nikoletta Erdelyi suggest your child may benefit from practising the skills below.

How to nurture them ❁ Let your child answer the phone. ❁ Give your child chores – feeding the dog or

watering the garden can turn into employable skills when your neighbours go away. ❁ Teach your child appropriate social greetings and

conversation for buying a treat at the mall, paying for movie tickets, ordering a pizza over the phone or booking Wheel Trans. Over time let them become more independent with these tasks. ❁ Get your child involved in recreation programs,

after-school activities and camps where they can develop interests and social skills. ❁ Have a friend interview your child to give them

confidence in speaking about themselves.

Arrange for your child to interview an adult (help them prepare questions to ask). ❁ When you play a game as a family, take turns

being the leader so your child learns to be in charge. The game leader gives instructions for the game, encourages players to have fun, and makes a wrap-up comment at the end. ❁ Look to your friends and family to find volunteer

Basic social skills • Greeting people and saying goodbye.

• Introducing themselves.

opportunities for ‘tweens’ and young teens. If your child has significant needs, you, a worker or a sibling can volunteer with your child. ❁ Mentorship programs and youth advisory councils

at children’s rehab or community centres are another good way to develop social skills.

• Making eye contact when speaking.

• Participating in small talk.

❁ Take advantage of co-op programs at school.

• Learning and using people’s names.

• Not interrupting others.

• Initiating and responding to humour.

• Keeping remarks to an appropriate length.

• Describing their feelings when appropriate.

For more information on Youth@Work, call (416) 425-6220, ext. 3328.

• Sharing opinions/ideas in a group.

• Asking for direction or assistance.

• Demonstrating enthusiasm and showing support. bloom ~ winter 2009 ~ 19

helpinghands

d

‘This is Poppy.’

‘She’s my autism service dog.’

In June Jennifer Cluff and her family welcomed Poppy, a five-month-old yellow lab, into their home.

The Cluffs are fostering Poppy for an organization called Autism Dog Services. Jennifer hopes that when Poppy’s close to two years, she’ll be ready to become a service dog for her son Connor, 5, who has Asperger syndrome.

BLOOM interviewed Jennifer, who lives in London, Ont., to find out about Poppy’s role.

BLOOM: Tell us a bit about Connor.

Jennifer Cluff: He’s incredibly funny and incredibly smart, a really caring person who’s friendly and likes to be around others. He’s typical of kids with Asperger in that he has his little obsessions. He loves Lego characters – especially batman – and he’ll role play things he’s seen in Lego video games and then take that play into his own world where he becomes the characters. So he’s batman, I’m bat girl and the dogs are bat dogs.

BLOOM: What are the challenges related to Asperger syndrome that you hope Poppy will address?

Jennifer Cluff: Connor has absolutely zero concept of dangerous situations. He might get so focused on something that catches his eye that he’ll run across the street in front of traffic, or bolt in a parking lot or in the mall. No matter how many times I talk to him about not talking to strangers, he doesn’t understand stranger danger the way other kids his age do. He has trouble understanding social cues and facial expressions and finds transitions stressful. If he’s working on something and the teacher says “it’s time to go to gym,” he’s going to have a melt-down if he hasn’t finished what he’s working on.

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BLOOM: How will having a service dog help?

Jennifer Cluff: Safety is a big thing. Poppy wears a vest with a belt that goes around Connor’s waist so he’s tethered to her and he also holds onto the handle on her vest. I walk behind and have the leash.

If Connor was to bolt, I would give Poppy the command to stay and anchor him. The nice thing is that it gives the child a sense of independence because instead of holding their parent’s hand, they’re holding the dog.

BLOOM: What about some of the social benefits?

Jennifer Cluff: One of my biggest fears is bullying at school. I think the dog will bring positive attention to Connor and give him an opportunity to talk about something he enjoys. Service dogs can have a calming influence so I hope Poppy will help Connor with transitions. They can also be trained to interrupt repetitive behaviours – pawing at the child and helping them to stop. The bond that develops between kids and service dogs is unbelievable and we think that’s another huge benefit.

BLOOM: What changes have you seen in Connor since Poppy arrived?

Jennifer Cluff: He will actually seek Poppy out to play with and go and get a toy for her. He loves to talk to people about his dog and will say “This is Poppy.

She’s my autism dog. We’re fostering her.”

BLOOM: What is involved in fostering a service dog?

Jennifer Cluff: We make a commitment to care for the dog for 12 to 18 months, to socialize the dog and teach her basic obedience. Every two weeks we go to a class with the trainer. At about 12 to 15 months,

the trainer will recall her for four to five months of intensive training. During that time, the trainer spends a lot of time working with the family and child.

BLOOM: Once Poppy is fully trained, how will she work with Connor?

Jennifer Cluff: She’ll go to school with him for the full day. The trainer will do presentations at the school so everyone understands her role and that when she’s wearing her vest, she’s not to be patted.

We’ve already taken her to Connor’s karate class and it’s amazing how well the other kids accept and understand that the dog is working. When Connor comes home, Poppy will be more of a companion, although she’ll still be an extra set of eyes and hands for me, and will go with us when we go out anywhere.

BLOOM: Are schools receptive to service dogs?

Jennifer Cluff: I think there’s an initial fear of the unknown, and concern that this dog will disrupt the classroom. But other families tell me that once teachers see the dog in the school, trained, they realize the benefits.

BLOOM: What does it cost to purchase a service dog?

Jennifer Cluff: It depends on the organization you work with. For us it’s about $18,000. Some local charities, such as President’s Choice Children’s Charity, have been very supportive to families, and in some cases have fully funded service dogs. As a family we are also running small fundraisers and have a website at www.pawsforconnor.webs.com.

bloom ~ winter 2009 ~ 21

researchhits

u

What stresses parents?

A new study provides unexpected results

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Parenting kids with disabilities is stressful. But sometimes pulling apart what elevates parent stress, and how factors related to different types of disability contribute to parent stress, is trickier.

In a study published in the journal Autism in June, moms of preschoolers with autism reported significantly higher levels of parenting stress and psychological distress – general worry and anxiety – than moms of preschoolers with developmental delay.

“We wanted to find out what was driving the higher levels of distress in the moms of children with autism, and measured the impact of children’s problem behaviour and decreased dailyliving skills,” says Annette Estes, lead author, clinical psychologist and associate director of the Autism Center at the University of Washington.

In both the autism and developmental delay groups, researchers found problem behaviour was associated with increased parenting stress and psychological distress. But to their surprise, children’s need for greater physical care – in areas like feeding, dressing, toileting and bathing – was not.

“I expected that both together would be related to stress, but the study shows that it isn’t the hard work of caregiving that’s

stressful,” Annette says. “Parents seem to be resilient to the hard work.”

Annette says the study points to the need to target difficult behaviour – no matter what the diagnosis – as a top priority in early intervention. “Autism affects every domain of functioning,

Researchers found problem behaviour was associated with increased parenting stress. But children’s need for greater physical care was not. and yet you can’t do everything at once. If you have a child with problem behaviour, that should rise in terms of priority of treatment – because not only will it help the child, it will help the family.” Problem behaviours measured in the study included irritability, hyperactivity, crying, inappropriate speech and not being able to follow rules.

A third somewhat unexpected finding of the study was that the relationship between problem behaviour and stress was less pronounced in the group of moms whose children had autism.

“While the overall stress levels on both measures were higher in

moms of children with autism, the relationship between problem behaviour and stress was stronger in the moms of children with developmental delay,” Annette says. “Problem behaviour still accounted for quite a bit of stress in the moms of children with autism, but it doesn’t explain the whole picture.”

More study is needed, she says, to identify other factors that contribute to high stress in moms of kids with autism. Is it the cost and demands of intensive treatment? Is it public misperceptions about the disorder? Is it social deficits that make it harder for parents to connect with their children?

Stress in parents may also change over the lifespan, she notes, and this study only surveyed mothers of preschoolers. Fifty-one children in the study had autism and 22 had developmental delay without autism.

The families were part of a larger study of the neurobiology and developmental course of autism.

“Many of the families have been involved in the study for 10 years and we’re starting to get a lot of longitudinal data that can help us answer some of these questions,” Annette says. “I don’t think a lot is understood about how stress and coping work over the lifespan, and that’s the next step.”

bloom ~ winter 2009 ~ 23

researchhits

Science

roundup u Autism moms as stressed as soldiers Mothers of teens and adults with autism are as stressed as combat soldiers, according to a study published in The Journal of Autism and Developmental Disorders. Researchers followed a group of mothers and their teen and adult children with autism for eight days, interviewing moms at the end of each day and on four days measuring hormone levels associated with stress. The level of chronic stress experienced by mothers was similar to that of combat soldiers and linked to problem behaviour in their kids.

u Testing for Fragile X drug begins A clinical trial of a medication to correct a neurochemical defect in Fragile X syndrome began at Seaside Therapeutics in Cambridge, Mass. this month.

Fragile X is the most common inherited cause of intellectual disability. The work follows basic research that traced how an error in the Fragile X mental retardation gene (FMR1) leads to changes in brain connections. A Canadian trial to test an antibiotic called minocycline is also underway. Surrey Place Centre researchers are studying whether the drug improves learning and reduces anxiety and behaviour problems.

u Early intervention yields big gains A program of intensive training aimed at toddlers with autism as young as a year old demonstrated better results in boosting IQ levels, communication skills and adaptive behaviour than the kind of care typically given, according to a clinical trial published in Pediatrics. In the study, 24 children aged 18 to 30 months received 20 hours a week of training from clinicians to encourage expression of positive emotions, promote eye contact and reward social interaction. A comparison group got typical care.

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u Celexa fails autism study Celexa, a commonly-prescribed antidepressant for children with autism, was no more effective than a placebo at reducing compulsions, restricted interests and hand flapping, according to a study published in the Archives of General Psychiatry. “We couldn’t believe our eyes,” says Dr. Evdokia Anagnostou, a Bloorview child neurologist and one of the authors.

u Brain disorders linked to cold hands Skin temperature of the hands and feet of preschool children with brain damage who use wheelchairs was several degrees lower than in children without neurological disorders, according to a physiotherapy thesis from the University of Gothenburg in Sweden. This may be because brain damage affects blood circulation. A small pilot study demonstrates that acupuncture may be effective in raising skin temperature in some children.

u Imagination applies to pain control Children who used guided imagery were almost three times as likely to reduce persistent stomach aches as children who received medical treatment alone, a study published in Pediatrics found. The guided imagery is a series of four biweekly 20-minute sessions and shorter 10-minute daily sessions recorded on CDs and used at home. The study concludes that guided imagery treatment plus medical care is superior to standard medical care alone.

u Study shows writing deficit in autism Children with autism have worse handwriting overall than typically developing children, and in particular have trouble forming letters, according to a study published in Neurology. The findings are indicative of a much larger problem with motor skills, which can include trouble holding a fork, buttoning a shirt or making subtle gestures and facial expressions.

u Does fish oil alleviate autism?

Bloorview scientists will launch a clinical trial next month to study the impact of omega-3 fatty acids on preschoolers with autism. Thirty-five preschoolers will receive fish oil and 35 will receive a placebo over six months. “We want to see if the omega-3 fatty acids have an impact on the core symptoms of autism – social communication deficits and repetitive behaviours – and on associated symptoms like aggression and anxiety,” says Dr. Evdokia Anagnostou, Bloorview child neurologist and scientist. bloom ~ winter 2009 ~ 25

researchhits

A new voice – and a measure of independence Infrared camera unlocks first words For 27 years, Dung Le’s mother has been at his side. That’s because Dung (photo below) has cerebral palsy and can’t speak.

His mother Yen is one of the few people who can translate his sounds and gestures.

When Bloorview engineering student Negar Memarian first met Dung, he wanted a way to select “A, B, C, or D” so he could answer multiple choice tests on his own. As a business college student, he didn’t like his mother interpreting his answers for him.

“This guy had so much motor disability and so much intelligence,” Negar recalls.

During their meeting, she noticed that while Dung’s movement in general was limited, he could open and close his mouth.

26 ~ bloom ~ winter 2009

Knowing that an infrared camera detects heat – and our oral cavity is warm – Negar developed a system that translates a camera image of Dung’s open mouth into a computer command, allowing him to type, play simple computer games, and turn pages in an online book.

Not surprisingly, the first word he typed – by opening his mouth to select the letters he wanted when an on-screen keyboard scanned the alphabet – was a tribute to Yen: M U T H E R (mother).

Infrared cameras – used for military surveillance, medical imaging and firefighting – map cold regions with dark colours and warm areas with brighter ones. Extreme warmth is represented with white (see photo top right). Negar created an algorithm that activates a switch when it detects movement and the shape of Dung’s open mouth. He tends to smile, resulting in a horizontal patch of heat-induced white.

An open mouth is like an on switch, while the closed mouth signals off.

The current high-end infrared system Dung uses at Bloorview costs about $50,000 and isn’t portable. Negar and her

colleagues hope to develop a handheld version that can be mounted on a rod on Dung’s wheelchair, to the side of his head, at a cost of about $2,000.

The advantages of the thermal camera are that it works regardless of light conditions and is non-invasive.

Negar is completing her biomedical engineering PhD at the University of Toronto and her research training in Tom Chau’s lab at Bloorview. Tom holds the Canada Research Chair in pediatric rehab engineering.

Negar began her studies in electrical engineering, but says she quickly tired of it. “All of these equations and numbers were very interesting, but I couldn’t understand how to apply them for the benefit of people. Biomedical engineering is the way to make a contribution directly to people.”

EVERYONE IN THE POOL! trailblazer ❁ Who: Louise Kublick ❁ What: Runs an aquatics program at Bloorview that gives over 4,000 children the opportunity to swim in integrated classes each year. Trains swim instructors at municipal pools across Ontario in how to include children with disabilities. Invented and brought to market a wet suit that helps children with limited movement maintain body heat in chilly community pools or lakes. Chaired an inclusive aquatics committee which developed a training guide for Canadian Red Cross swim instructors. For Swimmers who Move, Learn, Communicate or Behave Differently provides teaching tips for working with kids with a variety of disabilities, including how to use equipment like floatation belts and mirrors; how to adapt movement skills and in-water games; and how to communicate with children who are non-verbal. It will be printed in every province.

❁ Why: “I grew up at a cottage and I can’t imagine a life without aquatics. It’s such a great activity because it’s so social, so freeing and so relaxing. For a child not to be able to experience that would be a crime. And there’s no reason for any child – no matter what their disability – to not have that experience.” bloom ~ winter 2009 ~ 27

SEEN AND HEARD

trailblazer ❁ Who: Richard Ellenson ❁ What: Inspired by his son Tom, brought to market the Tango (on wheelchair tray above), a voice device that’s as sleek as a video console, speaks like a kid and has a built-in camera.

❁ Where: New York City ❁ When: 2006 ❁ Why: “The devices at the time were focused on building sentences. To a guy in advertising, that doesn’t equate to communication.”

Thomas and his family were the focus of a 2004 New York Times Magazine article – The Lessons of Classroom 506 – about inclusion.

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In 2003, Richard Ellenson convinced the City of New York to design two classrooms that would allow his son Tom and seven other children with disabilities to take part fully in kindergarten at a public Manhattan school.

Tom has cerebral palsy and doesn’t speak or walk.

A year later, frustrated by technology that didn’t support the fluid communication he wanted for his son, Richard sketched a product more in keeping with his creative instincts (he owned an ad agency at the time): it was sleek as a video console, spoke like a kid, with all the right inflections, and had a built-in digital camera.

In 2006, that napkin sketch became the Tango, a device Richard brought to market with a company he founded called Blink Twice. This past summer, Blink Twice merged with DynaVox – the world’s largest maker of augmentative and alternative communication (AAC) products – and Richard became the company’s chief vision officer.

We talked about parenting a child who is non-verbal and why he developed the Tango.

BLOOM: How did you react when you learned Thomas would never speak?

Richard Ellenson: When he was about two years old we were at his neurologist. He looked at Tom and said “Maybe this child will walk one day.” To me, I was never that athletic and that wasn’t the most important thing. “Will he be able to speak,” I asked?

I’ll never forget his words: “I don’t believe speech will be his strong suit.” I talk a lot, so for me that was a very hard thing to hear. At that point in my life, I couldn’t envision other ways of communication.

BLOOM: How did lack of speech affect Tom? Richard Ellenson: If you can’t speak in real time, people tend to not include you in real time. To be really good friends with someone who doesn’t speak verbally, you have to learn an entirely new way of communicating, and not everyone will do that. Tom has good friends, but it’s been harder for him to make them.

BLOOM: What are common misconceptions about children who are non-verbal?

Richard Ellenson: Parts of the human spirit are universal and parts are idiosyncratic. With most people, we overstate their universality, but with the disabled we focus more than we need to on their differences. They need to prove they’re smart, prove they’re fun, prove that they understand what someone is saying. People talk slower or louder to someone who’s non-verbal and generally assume it will be more work to interact. All of us want to find the things within us that make us special, but the challenge is more daunting to people with disabilities because others don’t take the time to engage with them. You have to be Stephen Hawking before people will sit up and take notice.

BLOOM: What motivated you to design the Tango?

Richard Ellenson: The devices at the time were focused on building sentences. To a guy in advertising, that doesn’t equate to communication.

Communication is a much richer notion that involves engaging someone in real time. It involves inflection, prosody, speaking in a language and a voice that people relate to, showing off a sense of coolness, being up to speed on your world.

BLOOM: What are the key features of the Tango?

Richard Ellenson: I think what everyone immediately responds to is that it looks really cool, it has great voices and a built-in camera. It was really important to bring that message to the field of AAC: we need to get cooler. We need to worry not only about what

the speaker thinks but what other people think – about what motivates communication. As they say, it takes two to tango.

BLOOM: What impact did it have on Tom? Richard Ellenson: When you have a Tango on your tray, you don’t look disabled, you look cool. Instead of “Oh, you’ve got this big device on your tray,” you’ve changed the conversation to “I’m cool” and kids respond to that. With the Tango, Tom’s expanded his magic bag of communication from a couple of gestures and words to phrases that are really intentional, to stories about his life he uses over and over – as we all do – to sound effects. People absolutely understand more of what Tom is interested in with the Tango. He’s considered one of the most popular kids in school.

BLOOM: What was most challenging about developing the Tango?

Richard Ellenson: The hardest part was walking into a field that evaluates things from an academic perspective and being someone who looks at things from a marketing perspective. The field was about building sentences, when to me it should be about your child building relationships. I saw communication in context. Why will people communicate? What will they want to listen to? How will my kid make friends?

BLOOM: How do you feel knowing you’ve given your son a voice in this way?

Richard Ellenson: It’s wonderful and humbling. I always felt it was a bit of destiny. I was an advertising person and focused on brand and perceptions, and while the AAC field had great thinkers, they weren’t always thinking about what the experience of AAC was for listeners. For me, every metric for success should be about what listeners are doing, not what speakers are doing.

BLOOM: What are your goals at DynaVox? Richard Ellenson: My role is to work with the company’s many innovators to re-imagine what the world can be like when it’s full of successful AAC users. We want to build devices that provide not just communication, but the foundation for a change in perceptions. So if a person in a wheelchair with a device has a headline over their head that says ‘This is a difficult life,’ my vision is that the headline becomes: ‘This is an interesting life. This is someone who has insight and fun. This is someone worth knowing.’

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L A U G H T E R I S ‘ A S PA R K O F L I G H T ’ trailblazer ❁ Who: Lloyd Ravn ❁ What: Recognizing his son’s gruelling rehab following a stroke, challenges himself to become a stand-up comedian, then organizes a comedy showcase to raise funds for Bloorview Kids Rehab.

❁ Where: Toronto ❁ When: 2008 ❁ Why: “I came to the realization that if I was going to ask Eric to confront a difficult task, I should challenge myself to do something that I found hard.”

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I suppose I’d always considered laughter to be important in the healing process, but hadn’t really thought much about it.

Ironically, it was April Fool’s Day four years ago when the therapeutic power of humour was demonstrated to me.

I was giving a eulogy at my father’s funeral on the day that my son Eric turned seven weeks old, and I was sure I wouldn’t get through it without losing my composure.

Remembering a conversation with Dad in which he said that when his time came he didn’t want his funeral to be too serious, I opened with a joke. That chuckle let me clear my head and get to the end of my speech in one piece. It certainly didn’t take away the pain of knowing that my father wouldn’t see

my son grow up, but it helped me get through the next part of my grieving process.

A few months later, my son Eric was identified as having global developmental delay. Doctors were telling my wife Jodi and I things like: “we may never find a cause for his delays” and “we can’t predict if he will ever walk or talk.” We went home to the Maritimes for Christmas, and the laughter that a visit with our family always brings helped us stay grounded so we could use our energy to help Eric with his new therapy regime.

In Eric’s physical and occupational therapy sessions, we pushed him to try things that were exceedingly difficult. As I cheered “you can do it” over and over, I came to the realization that if I was going to ask him to confront a difficult task, I

should challenge myself to do something that I found hard. Unlike Eric, I had the luxury of choosing this task. I decided to force myself to try something I’d dreamt about since elementary school, but never really imagined I’d have the courage to do: stand-up comedy.

When I took the stage at a local ‘open-mike’ show, and the audience laughed at the material I’d written, I felt a buzz like I’d never felt before. Making a room full of people laugh was therapeutic for me, and that release once again helped clear my mind so I could get on with the important job of helping Eric.

I continued to perform at amateur shows and noticed that people in the audience would approach me afterwards to tell me how much they needed a laugh that night to relieve the stresses in their own life. I loved these reminders that the healing power of comedy is a two-way street: the audience’s laughter gives me the charge I need, and at the same time provides them with an important tension release.

Last year, about two years after I started comedy, Eric was progressing well with his therapies when a dream visit to the Maritimes with his mother and brand-new brother Alex turned into a nightmare. At his grandparents’ cottage, it was clear that something was wrong with Eric. Shortly after arriving at the hospital, he began to have seizures, which took several doses of medications to control. When he didn’t regain consciousness, he was airlifted to a Halifax children’s hospital where doctors confirmed that our three-year-old had suffered a major stroke.

I’ll never forget the moment, late at night, when the neurologist broke the news to us. Everything was suddenly blurry and out-of-focus. I didn’t know if I could deal with what he was saying. Then, as he continued explaining the situation, he found an appropriate opportunity to make a light joke. As I laughed, the fog cleared, and I felt better about facing the challenge ahead. Jodi and I have mentioned that laugh several times – agreeing that the tiny spark of light in that very dark moment helped us both move forward.

After that stroke, Eric had to relearn almost everything from scratch, including his gross- and fine-motor skills and expressive communication. When he was well enough to return to Toronto, he spent several months at Bloorview, first as an inpatient, and then in the day program.

Doctors are still trying to figure out a diagnosis to explain Eric’s developmental delays and strokes (plural, because in May of this year he experienced two more major strokes which have put him back at ground zero in terms of his recovery). Dealing with the unknown in Eric’s case has been extremely difficult. It makes it hard for Jodi and I to keep our minds in the present, rather than getting lost in worries about what might come.

‘The healing power of comedy is a two-way street.’

Eric’s team at Bloorview recognizes two important things: that Eric’s recovery is dependent on the entire team, including Jodi and I, and that the whole team will benefit from, and be more successful as a result of, the therapeutic value of laughter. Every day, I see therapists, doctors, nurses and other team members sharing a laugh with the kids and families they work with, and I remember that it’s those light moments that help us all keep moving ahead.

If your child is recovering from an illness or injury or dealing with a disability, it's important that you keep those two things in mind. The way you deal with the situation will impact the way your whole family copes, and allowing yourself a little laughter therapy is sure to improve your ability to keep your mind focused on the important task at hand.

I think the easiest way to keep laughing is to watch and listen to our kids. Children are naturally hilarious because they don’t have the same inhibitions as adults. They’re sure to say or do something funny every day. And they love to make their parents laugh, so taking your cues from them can provide your kids some laughter therapy as well.

If you need a little more in-your-face laughter, treat yourself to an evening out at a live comedy show, or a funny movie, or just a few minutes with other adults sharing a laugh over a cup of coffee.

Contrary to popular belief, laughter is not inappropriate in a dark situation, it’s critical. As a parent, your family is depending on you to keep your head in the game, so take advantage of laughter’s power to do just that.

bloom ~ winter 2009 ~ 31

lifeskills

Keyboard nightmares?

Touch typing isn’t the answer Touch typing is the gold standard for keyboarding instruction, but for children with fine-motor problems, it’s a recipe for failure, says Cynthia Tam, occupational therapist at Bloorview.

“Children who struggle to use a pencil to print are not able to move and isolate each finger, which is the basis of touch typing,” Cynthia says. “When children have fine-motor difficulties, we want to give them a computer to take away the fine-motor challenge. But touch typing simply adds another barrier.”

A Bloorview study of 15 clients with physical disabilities in 2003 found that a “hunt and peck”

approach with one or two fingers – where children scan the board for the key they want and hit it – was more effective.

Based on their findings, a team of Bloorview occupational therapists and rehab engineers developed an interactive, game-based typing program that focuses on getting kids to type functional words rather than practise letter combinations using all 10 fingers.

The goal isn’t that children become speed typists, but that they acquire a speed that’s faster than printing.

The Bloorview typing program is offered in the spring and fall.

Call 416-425-6220, ext. 3639.

Breaking windows with my son - Continued from page 9 view of the Hudson from up there and an expansive view of the New York skyline.

It was a cloudy morning, but the river was calm and the colour of muted bronze in the dim light. Little ferry boats and barges moved across it quietly. I love being up there for a run. Between the city and the river and the exhilaration of running I can’t help but feel inspired. I feel free. It’s a feeling that I want to share with my son. I feel, when I’m like this around him, that we’re just two boys together. I’m not old (or too heavy) and he’s not impaired – we’re just boys running along a river. I hope he feels something of this. I hope a little of that sense of happy freedom rubs off.

“River,” I said to him (and say every morning). “City,” I added, raising my finger to the skyline. He just looked. I rubbed his little curly head and we headed 32 ~ bloom ~ winter 2009

down the hill. We finished the run and I got my wife and daughter up. It was time to get ready for the day.

Time to be serious again.

It’s hard balancing my son’s needs with the ordinary wishes that a father has for a child. I wish I had that objective confidence that the technician had when he looked at my son. I wish I could see past the work he’ll have to do and know that he’ll have fun too.

I suppose I worry too much. He’s such a happy kid and so naturally active that he’ll probably find his own way to let off steam if I’m smart enough to let him be. He’ll find a way to just be a boy.

Maybe the technician at the hospital is right. Maybe the worst we’ll have to do some day is pay for some broken windows. I hope it’s true. It’s a bill I won’t mind paying one bit.

David is a software development manager in Hoboken, New Jersey, who writes about parenting in Scattering Bright: http://scatteringbright.blogspot.com.

artworks

Turning the lens around

Conventional art can be frustrating for kids with disabilities who have great ideas but poor fine-motor skills.

But digital photography is proving more accessible in Light Writers, a 10-week course for youth with and without disabilities at Bloorview’s Centre for the Arts.

“Digital cameras are accessible and don’t require the fine-motor dexterity needed for drawing or clay,” says commercial photographer Brenda Spielmann, who runs the program. “They can be used in a wheelchair or with the child operating a switch.”

Brenda says the purpose of Light Writers is “to teach photography as an art medium, to empower the children and to give them an option for a vocational skill.”

She notes that children with disabilities are often the subject of photos “and it’s important that we change the lens around and give them the skills to photograph their lives from their own point of view. In this program, they’re not outsiders anymore.

They’re in control.” For more information on Light Writers, call (416) 425-6220, ext. 3317.

STUDENT TAKE BLOOM interviewed Bennie Taryn, 16, a participant in Light Writers whose work is featured above. Bennie has a genetic condition called familial dysautonomia.

BLOOM: How does digital photography compare with other art for kids with fine-motor issues?

Bennie Taryn: For me, digital photography is the easiest form of art because you don't have to do much with your hands. With drawing or painting my hands get tired after a while but with the camera I can go for hours. Digital photography still feels artistic because I'm still looking at stuff and arranging stuff with an artistic eye.

BLOOM: What impact has Light Writers had on you?

Bennie Taryn: This class made me appreciate photography more, do more photography, experiment more, and find a style of photography that I like. I really enjoy the class. I look forward to it.

BLOOM: What kind of images do you like to photograph and why?

Bennie Taryn: I like to photograph objects, animals, plants, food and babies. I'm not really sure why I like these particular things but I enjoy photographing them more than landscapes or people.

BLOOM: Is photography in your future?

Bennie Taryn: Yes! I hope I can become a photographer one day. I really enjoy it and I want a job that I can enjoy.

bloom ~ winter 2009 ~ 33

bookshelf

‘Walker, my teacher’ The Boy in the Moon is a new memoir

by Canadian journalist Ian Brown about caring for his son Walker, who has a rare genetic condition. Walker, 13, can’t eat or speak, wears diapers, punches his head mercilessly and cries for no known reason for hours.

The book is exquisitely written – a labour of love. It describes the relentless physical care, sleep deprivation and inability to understand a child, or soothe his pain, that can bring parents to their knees. But it also describes the contradictions – the expansive moments of grace and love. “The strange thing was that all this darkness could be relieved by a few pinpoints of light,” Brown writes.

A smile; a “glee spree” when Walker explodes in laughter; their shared language of tongue clicks; or when the boy finally lets go, resting “calm as a pond” on his Dad’s chest in the bath, or sinking into sleep against Brown’s body after hours of soothing. “Everyday occurrences for a normal child. But I know their true value.” u Read the first chapter of The Boy in the Moon on the BLOOM blog.

34 ~ bloom ~ winter 2009

u Double take: A memoir, Kevin Connelly, 2009. A 23-year-old born without legs tours 17 countries on skateboard, taking photos of people staring at him. u My baby rides the short bus: edited by Yantra Bertelli, Jennifer Silverman and Sarah Talbot, 2009. ‘Nonconformist’ parents tell their stories.

u Thicker than water: Don Meyer, 2009.

Thirty-nine adult siblings reflect on how their lives have been shaped by their relationship with a brother or sister with special needs.

online u WEBSITES

u BLOGS

The Lancet on disability A special issue that includes narratives from people with disabilities from around the world. http://www.thelancet.com/themed-disability

Media dis&dat http://media-dis-n-dat.blogspot.com A database of news stories about disability.

Autism hangout www.autismhangout.com News, knowledge and personal experiences on how best to thrive with autism Learning with Sydney www.whistlefilms.com/sydney.htm A new film about a 16-year-old with autism who writes with a letterboard. Listen to an interview of the filmmaker by author Donna Williams.

Including Samuel www.includingsamuel.com See a trailer for this documentary that chronicles photojournalist Dan Habib’s efforts to include his son with cerebral palsy in every facet of life.

Fragile X Research Foundation of Canada www.fragilexcanada.ca A group of parents and professionals raising research dollars and awareness. u FACTS Almost 90 per cent of 400 children with autism in Massachusetts are bullied, according to an online survey filled out by their parents. More than half of the parents said their children were hit, kicked or chased. Nearly 40 per cent had been bullied for over a year. The survey was conducted by the Massachusetts Advocates for Children. Only 32 per cent of parents said the school responded adequately.

Patricia E. Bauer http://www.patriciaebauer.com News and commentary about disability from journalist Patricia Bauer.

Hopeful Parents http://www.hopefulparents.org A grassroots blog for parents of kids with special needs.

Finding Joy in Simple Things http://findingjoyinsimplethings.blogspot.com A Northern California mom writes about her son with Prader-Willi Syndrome.

A Moon, Worn As If It Were a Shell http://elizabethaquino.blogspot.com/ A Los Angeles writer blogs about her 14-year-old daughter with severe, intractable seizures.

To the Max http://lovethatmax.blogspot.com A New Jersey mom writes about her six-year-old son with cerebral palsy.

Life With a Severely Disabled Child http://severedisabilitykid.blogspot.com An Ontario mom blogs about life with her 15-yearold daughter with disabilities related to stroke.

bloom ~ winter 2009 ~ 35

t Joey has a rare form of muscular dystrophy that weakens his muscles requiring him to live at Bloorview Kids Rehab. Despite his complex medical picture, he’s a shining star at Bloorview. Every star is unique just like every child. At Bloorview, we help kids with the most severe disabilities live ordinary and sometimes extraordinary lives – just like everybody else.

Our stars should have no limits Bloorview Kids Rehab is the gold-standard in care, research, and education for kids with disabilities. As Canada’s largest children’s rehabilitation and complex continuing care teaching hospital, we are an international leader in childhood disability.

Help make our stars shine.

Donate today.

Call 416-424-3809 or visit www.bloorviewkidsfoundation.ca Bloorview Kids Rehab: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.bloorview.ca