BLOOM winter 2010

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

PA RENT TA LK

Learning to love the baby steps M U LTIPLES

More than a handful Parents raising two or three children with disabilities SCHOOL DAYS

Inclusion ‘It’s about the environment, not the kid.’

REV ERSE PA REN TIN G

When 21 is the loneliest number

winter 2010

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

O BL OM

WINTER 2010

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.

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

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

CONTRIBUTORS PUBLISHED BY: Holland Bloorview Kids Rehabilitation Hospital WRITER AND EDITOR: Louise Kinross CREATIVE DIRECTOR: Sara Purves PRINTER: Quality TIme Graphics Inc.

HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL Holland Bloorview 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.

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

Our new name Canadian investment executive Bill Holland donated a record $20 million to Bloorview last June.

“When I walked in there the first time I was blown away by the kids,” Bill says. “But then seeing the volunteers and staff and the heart and soul they put into their job, that’s remarkable.” In total, the Holland family has donated $26.2 million to Bloorview. In recognition of the Hollands’ extraordinary contribution, we added the Holland name to our name. Bloorview Kids Rehab is now Holland Bloorview Kids Rehabilitation Hospital.

BLOOM family Keep sending us digital photos of your child “in bloom.” E-mail to lkinross@hollandbloorview.ca and we’ll feature as many as possible in our summer issue.

BLOOM blog & e-letter http://bloom-parentingkidswithdisabilities.blogspot.com

Taryn Green won first prize in Holland Bloorview's filmpossible contest. See her video The Triangle Girl Retold and 72 other entries at www.filmpossible.ca.

On the cover CONTACT US EMAIL: lkinross@hollandbloorview.ca TEL: 416.424.3866 or 800.363.2440 FAX: 416.425.9332 MAIL: Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8

Gavin Daley, 2, had his picture taken for a calendar in support of Sammy's Friends, an online group for parents of children with limb differences.

Visit http://health.groups.yahoo.com /group/SammysFriends/.

Gavin's mom blogs at One Little Fin: http://onelittlefin.blogspot.com.

Photos taken by Annya Miller.

inthisissue

features

PARENT TAL K

M ULTIPLES

SCH OOL DAY S

REV ERSE PA REN TIN G

06 Learning to love the baby steps

13 ‘Live big and live loud’

18 Inclusion: ‘It’s about the environment, not the kid’

26 When 21 is the loneliest number

08 ‘I’m part of a whole new world’

14 ‘I’ve learned not to take anything for granted’

ROL E MOD ELS 10 Eric sees the beauty of technology

16 ‘In some ways we have a stronger family unit’

TRA IL BLA ZER RESEARCH H ITS 28 Tuning in to the music of kids who can’t speak 29 Science roundup

32 ‘You are the expert on your child’

L IFE SK IL LS 31 Show me the money

30 Caregiver health affects us all

fresh

departments

SU M MER FUN

F ROM THE EDITOR

20 Welcome to the green room

04 Today

F EED BACK BED TIME 22 When sleep eludes you

M OV IE NIG H T

05 Your letters

BOOK SHEL F /ON LIN E 34 New titles, websites and facts

24 Film review: Tying Your Own Shoes

bloom ~ summer 2010 ~ 3

fromtheeditor

Today

I interview two powerful women in this issue. Rachel Coleman is the founder of Signing Time, a company that produces sign-language videos, and mother to two girls with disabilities (p. 13). Ann Hovey is an engineer I met six years ago when her daughter Cailyn was an inpatient at Holland Bloorview following surgery to remove a brain tumour (p. 32).

I’m always eager to learn how parents cope with the most challenging situations.

Rachel talks about a time she overheard a boy tell a soccer coach he didn’t want to be her daughter Leah’s partner because: “She can’t talk and she can’t understand me.” Leah is deaf.

“Is there something I can do that would make a difference?” Rachel asked herself. This led her to phone the preschool the boy attended and ask if she could come in to do a sign-language story time. She went in twice and the next weekend the same boy ran up to her daughter and signed: “Friend, play, ball.”

4 ~ bloom ~ winter 2010

Asking ourselves how we can improve a difficult situation for our child doesn’t mean beating ourselves over the head for what we have or haven’t done in the past. It involves starting where we are – today.

And from Ann, I took tips on how to remain hopeful when we’re up against seemingly impossible odds.

Ann’s daughter Cailyn was diagnosed with a brain tumour at age three and given 10 months to live. “I created a list of all the things I could do to help my child,” Ann says. “It was painfully obvious the things I couldn’t do for her, so I needed to focus on what I could do.” In addition she asked herself everyday: “What can I do to make sure today is successful?” It could be as simple as taking Cailyn out for a walk. She didn’t let herself think past that day, knowing she would get caught up in fearful thinking.

It isn’t easy, but I commit to asking myself every day: ‘What can I do to improve my son Ben’s life (above)?’

And I will not think past one day, because I know that ‘today’ is all we have.

Thank you Rachel and Ann!

yourletters u FROM THE MAGAZINE, E-LETTER & THE BLOG

I concur with Ian Brown's comments (Walker’s gift, November 9). We have to start to view the disabled, even the severely disabled, differently. It is not a question of "tolerating" them but more about looking seriously at what they give to, and teach, their families and communities. Quality of life can be measured in many ways but in these cases, we need to look beyond the disabled child to the lives that are affected by those who love and care for (them). That is where you will find undeniable quality. I have yet to see an index that measures this type of quality.

Online

I just read Ian Brown's article. I am so glad he was able to express many conflicting feelings and thoughts that parents have while raising a special-needs child. I agree with him on all his points but I find the one about the meaning of his son's life and the fact that it is never addressed an essential one. When my daughter was five days old, she was diagnosed with very severe congenital heart defects. The specialists could only offer palliative care. We had to make a decision almost on the spot about her future. We did not get any input from anyone, except the cardiologist, and he only talked about her heart. Many times, you revisit that moment and you wonder how you made such a decision. Bloom is always inspiring reading and thinking.

Online

You have made me cry (A shattered trust, October 21). I am an NICU nurse and a mom of a child with autism, and I have the unfortunate position of seeing both sides. I cannot give you any reason, even remotely plausible, for the poor communication and care you have received. All I can say is that I became a much better, more compassionate and understanding nurse after I had my son. I know what it is to grieve and to be scared, frustrated and overwhelmed with getting what your child needs. No one could have ever explained it to me in my prechild life. Ever. I have had my own run-ins with teachers, speech therapists, doctors and the like who seem to be unable to listen to the parent. When I can, I kick them to the curb. Good luck. May you find those who "get it" and can support you in the way you deserve.

Online

I can relate completely to this post (Beauty: It’s ours to choose, October 5). My middle son was born with ‘dysmorphic’ features, but my husband and I take offence to the word. He is a beautiful boy and the thought that he is anything but a beautiful child is unacceptable to us. I am not in denial that he looks different than other children his age but he still has the same thoughts, feelings, wants and needs as all of the children around him.

Genetics took pictures of him also to help diagnose him and I can relate to how you felt. Thank you for writing this.

Online

I have read the recent issue of BLOOM (Summer 2010) from cover to cover and can say with all honesty that every article was informative, educational and moving. I know that Ontario’s Child and Youth Advocate would enthusiastically agree with your fundamental message that every child is “whole and beautiful and unique and irreplaceable.” You are doing a great job!

Janis Purdy, Child and Youth Advocate Office of the Provincial Advocate for Children and Youth, Toronto

I'm a regular reader who hardly leaves a comment but am thankful for all the hard work that you've put into maintaining this blog. Through your blog I see that there is so much more that can be done to support the special-needs community in my country. I've also been inspired by your postings, and amazed at the lives of those who're on your blogs of interest. I'm from Malaysia, on the opposite side of the world.

Online

I was reading BLOOM last week (Summer 2010) and I am just so impressed by your writing, the articles and the compassion, hope and honesty enclosed within its pages. Thank you for using your gifts in such an amazing way that enlightens and educates.

Lee Steel Parent Liaison, Autism Research Unit, SickKids, Toronto

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

bloom ~ winter 2010 ~ 5

parenttalk

Learning to love the baby steps I am sitting at the kitchen table with my son Max, watching him move a purple crayon over a white piece of paper. Max is grasping it with all his might, trying to make it do what he’d like it to.

6 ~ bloom ~ winter 2010

by Ellen Seidman

This doesn’t come easy: Max has cerebral palsy, which affects his ability to use his hands. Suddenly, Max draws a squiggly circle. “YEAAAAAAH, MAX!” I squeal as my heart does a happy dance.

“That’s a really great circle, buddy!” Max beams at me.

Birthday parties for friends’ tots were a certain kind of torture. I’d watch all the other babies crawling around, and wonder when and if Max would ever do that. His muscles were too weak for him to get up on all fours. But he had determination and at 20 months he started commando crawling (picture an army soldier in combat). That was the first time I realized that even if Max wasn’t doing the exact thing I’d been hoping for, he was doing it, just in his own way – and on his own timeline.

A seven-year-old drawing a circle would mean nothing to most moms. To me, it is a true feat. When you have a child with special needs (or ‘special powers,’ as I like to say), achievements like these are no small things; every single one is A Big Deal. It’s just taken me a long time to appreciate them.

On his third birthday, Max took a step from my arms into my husband’s. Perhaps you heard us shouting “YEAHHHH, MAX!!!” We both cried. Finally: a milestone. No, a miracle, because by then we knew Max had cerebral palsy. Within months, he was walking.

Like any expectant mom, I looked forward to the gigantic joys that would come my way when I had a baby, from first word to first step. Then Max had a stroke at birth. Doctors told my husband and I the worst: Max might never walk or talk. He could have mental retardation along with hearing or vision problems. Cerebral palsy was a real possibility. They didn’t give us a whole lot of hope.

Those big kind of advances were few and far between.

Yet as time went by, and I acquired patience and acceptance I never thought I’d have, I realized that setting my sights on big milestones would only set me up for disappointment. And so I learned to relish the ‘inchstones,’ as I’ve heard them called.

That first year with Max was the bleakest of my life. I constantly watched his movements, anxious that I would spot stiffness (a sign of cerebral palsy) and aching for him to ‘do’ things. I read and reread What To Expect The First Year and endlessly googled information about infant development. I had my mind set on the major stuff: babbling, talking, walking. I kept hoping Max would act like a typical kid. I desperately wanted him to be a typical kid.

My friend Hope had her son the same month Max was born. When our boys were four months old we decided to learn infant massage – seemingly a good thing for any baby – and chipped in to hire an instructor to come to my house and show us the way.

The instructor frowned as she maneuvered Max’s little limbs. “He’s got some stiffness,” she said. I was crushed: Even when it came to massage, Max wasn’t going to be like other kids.

There was the day when Max, 4, picked up a spoon for the first time and fed himself chocolate pudding (what a glorious mess). And the day when Max, 5, spotted the car waiting outside our home to take us to the airport and Disney World, and before we could stop him he flew down the stairs by himself – something just as memorable as our trip. And the other day, when I called home while I was away and Max was getting ready for bed; the babysitter put him on the phone and said, “Tell Mommy you’re getting dressed” and he said, clear as anything, “Getting dressed.”

Two clearly-spoken words: Now that’s something to celebrate.

Ellen Seidman lives in New Jersey and was just named one of Babbles Top 50 Mom Bloggers of 2010. Follow her at http://lovethatmax.blogspot.com.

bloom ~ winter 2010 ~ 7

parenttalk

‘I’m part of a whole new world’

by Chris Beesley

My son's name is Mitchell.

He's nearly 16 years old.

Most 16-year-old boys are eagerly anticipating getting their driver's license and dating girls. Perhaps some are considering going to college or university.

Mitchell isn't doing any of those things. And while there are tears in my eyes as these facts stare at me in black and white, I don’t feel sorry for him. They're just selfish tears; the result of indulging in momentary thoughts of what might have been.

8 ~ bloom ~ winter 2010

Before we had children, my wife Lori and I were like many young couples. We were building our careers and chasing dollars. The thought of buying a house and having children was on the horizon, but friends, dinners out and planning our next trip were immediate concerns. Once we found out we were going to have a baby, there was a seismic shift in our priorities. Suddenly, a house in the suburbs and saving money became paramount. So far, life was going according to plan.

Then Mitchell was born with a cleft lip. Nothing severe though. A couple of surgeries at Sick Kids and all was well: just a little ‘speed bump.’ But all was not well and by the time he was two, Mitchell was diagnosed with Fragile X, the most common inherited form of intellectual disability. This wasn't just another speed bump. This was a giant ‘off ramp’ from the road we thought we were on. Our lives became a series of waiting rooms, tests and therapies.

Our initial focus was Fragile X. How could we gain control over it? What type of therapies and interventions were available? We lived in fear of not doing enough, of not doing it fast enough, or of not doing the right thing.

Through all of this, Mitchell was the same cute little toddler he'd been before we got the diagnosis. A wise genetic counselor reminded us of this. Mitchell needed to be valued as a person, she said, not a diagnosis. She recommended we take plenty of time to just be a family. She told us that 80 to 90 per cent of couples with special-needs kids end up divorcing.

She gave us permission to say: “Okay, we’re overloaded. We’re not going to go to speech therapy for three months. Nothing bad will happen and we can reconnect as a family.”

In the end, I’ve learned that it’s the family and friends in Mitchell's life who will determine who he is. It's not about what syndrome he has or how much therapy he receives. Mitchell taught me that. And he reminds me

of it every day just by being the funny, outgoing, empathetic (and yes, frustrating and exasperating) teenager that he is.

Some people say that God doesn't give you anything that you can't handle. Some say we're lucky that God chose us to be parents of a special child. Others say: ‘Everything happens for a reason.’ These are all comments from well-meaning family, friends and acquaintances. They rarely come, however, from other parents of special-needs children. When we asked ourselves “Why us?” and “Why did this happen to our child?” Lori was very pragmatic and said “Why not us?” and “Why not our child?” I believe that Mitchell came into our lives simply because my wife and I wanted to have children. You can't choose your child's gifts and abilities. I think good parents of typical kids eventually get to that perspective. But having a special-needs child makes you realize it faster.

My focus in life has changed because of Mitchell. I no longer spend all my time on career. I volunteer about 20 hours a month with the Community Living Toronto board and as chair of the Developmental Services Council of Toronto. I also volunteer teach Track3 skiing to kids with disabilities in the winter.

I’m part of a whole new world that’s really cool and that I never would have been exposed to without Mitchell. I enjoy it so much that I’ve taken non-profit management courses and am actively trying to switch careers. I’m interested in how I can make a difference in others’ lives.

So we’re a family on a road that's less travelled but one that's got some unique – even breathtaking – scenery and I'm glad we're on it.

Chris Beesley (with Mitchell in photo) and his wife Lori were part of a group of parents and professionals who founded the Fragile X Research Foundation of Canada (www.fragilexcanada.ca). There are lots of good resources on their website.

bloom ~ winter 2010 ~ 9

10 ~ bloom ~ winter 2010

rolemodels

Eric sees the beauty of technology Eric Wan (photo centre) has lived a life few can imagine. At 18 he was a healthy high-school student who excelled at computers and violin. Three days after a routine measles vaccination he was rushed to hospital unable to move and struggling to breathe. For four months he lay in intensive care, where he was diagnosed with transverse myelitis, an inflammation of the spinal cord. He was paralyzed from the shoulders down and needed a ventilator to breathe. The only possible cause doctors could point to was the measles shot. He was transferred to a long-term care hospital for two years of rehab.

Last summer Eric graduated with a computer-engineering degree from the University of Toronto after winning an award for his thesis. Since 2005 he's been developing technologies for children with disabilities as part of his training at the Bloorview Research Institute. He began graduate school in the fall on full scholarship. “He’s among the very best software developers I have ever encountered,” says Tom Chau, Canada Research Chair in pediatric rehab engineering and Eric’s thesis advisor (photo second from left). > bloom ~ winter 2010 ~ 11

BLOOM: What was your life like before you became paralyzed?

to purchase my own place – maybe a condo – and hire my own attendants.

Eric Wan: I lived a very regular life. I loved computers and spent a lot of time practising violin and playing in my school’s symphony orchestra.

BLOOM: When you can’t use your hands, how do you control your wheelchair and use a computer?

BLOOM: What was most challenging about acquiring significant disabilities as a teenager?

Eric Wan: There was no challenge initially because I didn’t think of myself as being paralyzed for life. I thought I would get better, or there would be some kind of cure. For the four months I was lying in bed in the ICU, my main thought was of boredom. It wasn’t until I got to West Park for two years of long-term rehab that I realized the paralysis would be for life.

BLOOM: What happened when you realized you wouldn’t get your mobility back?

Eric Wan: I had periods of depression and anger that weren’t easy to overcome. The main reason I was depressed was because I couldn’t do anything at all. I was completely immobilized physically. It was a matter of taking very little steps, one day at a time.

At first I couldn’t even get out of bed I was so sick.

Then my goal was just to get out of bed and sit in the wheelchair for an hour.

BLOOM: How did you get through those dark times?

Eric Wan: It was a struggle between depression and the motivation to go forward. Something that helped was when the therapist at West Park gave me different types of assistive devices. I remember the first time I was able to activate a button to turn on the phone. I was so happy. To anyone who’s healthy, picking up a phone is nothing at all, but for someone who’s paralyzed and unable to do anything, turning on the phone was a huge step forward.

BLOOM: What is your life like now?

Eric Wan: I feel I’ve come a long way since I was paralyzed, and I’m quite happy about that. But there’s still a long way to go in terms of my academic pursuits and other aspects of my life.

BLOOM: Such as?

Eric Wan: Right now I live in subsidized housing in a unit that’s adapted for people with disabilities and the building has attendant care. I hope in the future

12 ~ bloom ~ winter 2010

Eric Wan: I use a sip and puff (straw) system of four commands to control the directions of my wheelchair: a hard sip, a soft sip, a hard puff, and a soft puff. I use a head-tracking device to control the mouse cursor on my computer (Eric has a tiny reflective sticker on his glasses. When he moves his head, the computer translates it into mouse movements and clicks). I also need a way to type so I use an onscreen keyboard.

BLOOM: But you've just got one reflective sticker. Is that what you use to type each individual letter?

Eric Wan: Yup. It would be like comparing 10-finger typing to one-finger typing. It's a lot slower. Wordprediction helps speed it up.

BLOOM: How are you able to get your studies done?

Eric Wan: It takes a lot of planning – and the use of technology.

BLOOM: One of the main projects you've worked on is the virtual instrument, which recently won an international award. This software allows children who can’t manipulate conventional instruments to play music. Why is it important?

Eric Wan: I feel playing music is important to every child because it helps with the creative side of thinking. To be able to introduce music to a child who's not able to do it at all, and open up that possibility, is very exciting.

BLOOM: How has quadriplegia changed you?

Eric Wan: I never thought I would be having this experience. Being in a wheelchair is quite a different way of seeing things. While it creates physical blind spots, it also gives me insight into the importance of assistive technology. The former causes me to run over countless number of toes. The latter enables me to appreciate the beauty of every piece of technology around me, to an extent not many other people do.

multiples multiples

More than a handful Parents know the energy they devote to meeting a child’s special needs – whether for physical care or therapy or at times of hospitalization. But what if you had two children with disabilities? What would the practical implications be?

How would you feel when you learned your second child had a disability? How would you cope, and what would you learn?

These questions motivated our interviews with three exceptional parents who have more than one child with a disability.

'Live big and live loud' Rachel Coleman (centre), is mom to Leah, 14, (left) who is deaf, and Lucy, 10 (right), who has spina bifida and cerebral palsy. Rachel founded Signing Times, a company that produces sign-language videos, and blogs at Strong Enough To Be (www.rachelcoleman.com). "Strong Enough To Be is not about always being strong enough to handle things," Rachel says. "It’s about looking at the amazing gifts that our children are in our lives and acknowledging the experiences we would never know and never have if we didn’t have children with disabilities." bloom ~ winter 2010 ~ 13

‘I’ve learned not to take anything for granted’ multiples multiples 14 ~ bloom ~ winter 2010

Dana Florence’s triplets were born three-and-a-half months premature. After months in hospital, where they survived complications, Brody, Taylor and Cole finally came home.

At 10-months-old they were diagnosed with cerebral palsy.

BLOOM: How did you feel when your triplets were diagnosed with the same disability?

Dana Florence: I was a teacher, so I knew what they were supposed to be doing in terms of milestones and my children were delayed. The red flags were there, but I don’t think anything can prepare you for receiving the diagnosis. It was a triple for us – triple the heartache.

Because your vision of what will be for your babies changes – or you think it might change – in that moment, and your whole life flashes before you. I cried a lot and my husband was devastated. But when you go home after the diagnosis and you look at your children – they’re your children. What are you going to do? I couldn’t continue to cry all the time. I needed to move forward and do what’s best for them. I didn’t want to let this diagnosis define who they’re going to be.

BLOOM: How did you move forward?

Dana Florence: I’m a doer, and I had to figure out how we can deal with this. That’s when we started looking into clinical trials in the states. I became very fascinated with stem-cell therapy

and a clinical trial at Duke University with cord blood. We saved our kids’ cord blood at birth, but because they were so premature they didn’t meet the study’s protocol. I spoke to doctors and I felt like ‘Warrior Mom’ trying to find something more than typical early intervention to help my kids. We have SickKids and Holland Bloorview – some of the best children’s hospitals in the world – in our backyard. In speaking to people, I learned that the issue holding back research was money. That’s when the lightbulb went off and we developed Three to Be, an organization that raises funds for research into children’s neurological disorders.

BLOOM: What did you get from Three to Be? Dana Florence: Three to Be was a huge game-changer for me. It allowed me to channel my energy towards something positive and made me feel like I had some control over an uncontrollable situation. I have such hope that the funds we raise will support research that could potentially make a huge difference for my kids and other kids who face similar struggles.

BLOOM: What practical tips would you give other parents?

Dana Florence: A huge thing is to learn how to accept help and be okay with it. We have two caregivers with me because my kids need one-on-one. I feel so blessed because we have such a supportive family. Every Friday my family and my mom-in-law

come for dinner and everyone helps out. I’ve learned that I can’t do this myself and whenever I try to be too much of a super woman, it’s not good for me or the kids because I burn out. The way I justify help is that it’s a good thing for everybody.

The second thing I’ve learned is that we really are stronger than we think we are. If you’d told me a couple of years ago that

‘We celebrate every little thing that is positive now.’ this would happen, I wouldn’t have thought we could survive emotionally. But you just do.

And third, and most importantly, I’ve learned not to take anything for granted. Life can really throw you curve balls and it’s how you deal with them that defines who you are. We celebrate every little thing that is positive now. Ours is a different life than what I imagined, but I love my life. I love my family and my kids more than anything in the world and they’ve taught me more than I could have imagined. They’ve helped me reach a potential in myself that I didn’t think was possible.

Learn more about research projects on stem-cell and robotic therapy supported by Three to Be at www.threetobe.org.

bloom ~ winter 2010 ~ 15

‘In some ways we have a stronger family unit’

Andrew Levin (centre) is dad to Kenneth, 17, and Cameron, 14, who both have autism.

BLOOM: How are the boys affected in everyday life?

Andrew Levin: They’re fully functional in terms of changing, toileting and eating, but they can’t be left to their own devices for any length of time. Kenneth is somewhat verbal but Cameron has very little vocabulary.

BLOOM: What emotions did you experience when you learned Cameron also had autism?

Andrew Levin: I still remember the exact moment when I realized there was a good chance that Cameron had autism. I went to pick him up at daycare – he was less than two – and all the 16 ~ bloom ~ winter 2010

kids were gathered in a circle having some sort of reading or social activity and Cameron was on the other side of the room playing Lego. I remember saying: “Uh oh.” I knew from Kenneth so well that if Cameron was indifferent to what the other children were doing that wasn’t good. In some ways, because I expected it, it wasn’t as difficult.

But in some ways I was more devastated because with Cameron being my second child, I knew what autism was. The writing was on the wall. There was no asking “what does this mean?” or relying on someone else to tell me what was involved. I think my wife Nellie

and I were both equally devastated, in our own ways.

BLOOM: What practical challenges do you face?

Andrew Levin: It’s one thing to restructure your life to meet one set of special needs, but it’s more complicated to restructure life to meet the needs of two children who are quite different, even though they have the same diagnosis. For example, we can leave Kenneth alone for short periods of time in the house if he knows where we’re going and that we’ll be back soon. But we can’t leave Cameron by himself for even five minutes, because

familymatters he’s much more mischievous and could get up to something. Kenneth likes going to sports events and we’d like to go as a family, but Cameron can’t stand huge auditoriums. On weekends, when most families go out as a group, we often split up. I take one of the boys somewhere and Nellie takes the other.

BLOOM: Are there other issues?

Andrew Levin: What the future holds is a big concern.

I’m a man in my mid 40s and I have two kids who can’t take care of themselves. We have real concerns about down the road when my wife and I can’t care for our kids anymore.

BLOOM: What strategies enable you to manage?

Andrew Levin: Good support is absolutely essential. You can’t do this alone. My wife is a stay-at-home mom and we have a selection of caregivers we call on an ad-hoc basis. In the summer we have a caregiver for each boy for several hours each day, so that each can do the things they enjoy doing. There are resources out there and you have to investigate them.

Some may be a waste of time but others are immensely valuable. As tough as it’s been, we couldn’t have done this without support and assistance. The other thing is you shouldn’t hide yourself away because of your children. You need to be out there exposing your children as much as possible to the real world. You don’t want to find

yourself in a situation where you’re cut off in your house and it’s just you and your child with a disability. You want to keep visible and active.

multiples multiples

BLOOM: How do you relieve stress?

Andrew Levin: My wife will head out for a few hours to get away and I have time to myself at work and go to the gym four times a week. I find that refreshing and it helps clear your mind. The reality is we’ve been dealing with this since 1997 so while it’s stressful, it’s almost our lifestyle now.

BLOOM: What have you learned?

Andrew Levin: I like to think I get less stressed about things that aren’t important. I’m more easy-going. I have no desire to have a job where I work 80 hours a week. Seven years ago I switched from being a lawyer working long hours in private practice to doing legal work for an insurance company. That gives me the flexibility to be home by 5:15 and spend time with my kids. One positive thing about kids with autism is that they maintain an innocence to them which makes them enjoyable to be around – even when they’re older. If my sons didn’t have autism at age 17 and 14 they’d want nothing to do with me. They’d be hanging out with friends. But my kids like to be around me.

Notwithstanding all these other issues, in some ways we have a stronger family unit.

Two children with disabilities = family stress, study says A 2007 study compared 59 mothers who had one child with autism and one child with another disability with a group parenting only one child with autism. The study – published in Intellectual and Developmental Disabilities – found that mothers of one child with autism and one with another disability reported more symptoms of depression, greater worry, and less family adaptability and cohesion.

The study suggests that families who face competing demands with multiple children with disabilities may become less flexible in their ability to accommodate everyone’s needs. The researchers note that mothers with higher family incomes reported fewer depressive symptoms, regardless of the number of children with disabilities.

bloom ~ winter 2010 ~ 17

Inclusion: ‘It’s about the environment, not the kid’ Dan Habib (second from right) is a photojournalist and creator of Including Samuel, a documentary that chronicles his family’s efforts to include his son Samuel (second from left), who has cerebral palsy, in every part of their lives. The film also captures the experiences of four other children and adults with disabilities.

BLOOM: How did Including Samuel originate?

Dan Habib: When Samuel was about two, my wife went through a leadership series at the University of New Hampshire's Institute on Disability. They brought in national experts and self-advocates. She realized it was an incredible way to learn about the education, health-care and legal systems. We wanted to be on the same page, so I took the program and it had a profound effect on me. It gave me a vision for Samuel’s future beyond what I could have imagined.

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Suddenly, instead of thinking of all the limitations, I was thinking about possibilities.

When Samuel was three, he got very sick: he had a tonsillectomy and aspirated blood and developed pneumonia. I'd started taking some photos in the hospital and his doctor knew I was a photojournalist and said "Why not tell the story of what it's like to be a parent of a child with a disability?" Then I was showing my photography to a group of high school

schooldays students and they said: "We like your pictures, but without seeing video we can't connect." That's when I started to do a film.

BLOOM: Why does inclusion matter?

Dan Habib: From a personal point of view, school is the hub of our community. When we thought about what we hoped for Samuel – it was that that he'd be a participating and fully-welcomed member of our community. That meant attending his local school.

Attending your local school has a major social impact.

Because Samuel goes to school with his friends, they're over at our house every day, they know his Dynavox voice device, they know he plays baseball, they know he loves NASCAR and dinosaurs and volcanoes. He's not the kid in the wheelchair.

From an educational perspective, every piece of research we've been able to find shows better academic achievement for kids in inclusive settings.

And we're seeing that for kids without disabilities as well. At the University of Wisconsin, they're working on a study that shows that kids without disabilities become much more engaged in the curriculum and retain more when they're working in partnership with kids who need some support or mentoring.

BLOOM: What did you learn while filming?

Dan Habib: I've learned inclusion usually succeeds – not necessarily because of money or technology, although they help – but because of leadership from the top administrators in a district and attitude. And the attitude being that all kids deserve to be in a general education classroom and can benefit from it.

And that all kids can achieve. It's an amazing thing how many educators don't believe that – how many teachers in regular ed and special ed don't have high expectations for kids with disabilities.

When inclusion doesn't work, we blame it on the kids. It's because of this kid's particular qualities. In the U.S., the law is that you are in the least restrictive environment with the proper supports. But inclusion only happens with supportive leadership, so that if a teacher is struggling, they get the training they need.

BLOOM: Is inclusion more possible for kids with certain types of disabilities?

Dan Habib: You show me any kid who you say can't be included, and I'll show you a kid with similar characteristics being included somewhere else. It's about the environment, not the kid.

BLOOM: I'm frustrated that there are no options for my son other than a life-skills program, when I feel he could still be making academic gains.

Dan Habib: I believe life skills are best learned when a kid is living life with peers. You can't sit and teach a kid life skills in an artificial environment. If we're focused on getting a kid to tie his shoes and brush his teeth, we're aiming the bar low. Samuel will never tie his shoes or make a sandwich, but people have told me he's made a bigger impact on them than anyone else they’ve ever met in their life.

BLOOM: Is inclusion harder for children with intellectual disabilities?

Dan Habib: Inclusion is possible for everyone, but our society does have stigmas around certain types of disabilities. If a child has an intellectual disability there are lower expectations for that child. If a child has behavioural or emotional issues they're seen as scary or dangerous. A child with a physical disability may not be able to get into his or her school. I think there's a particular stigma against kids who are nonverbal. If someone can't talk, we associate them with having less intelligence, lower our expectations and don't work as hard to include them.

BLOOM: Is inclusion easier in the younger years?

Dan Habib: Generally people see inclusion becoming more difficult as the curriculum becomes more demanding. But I think there will come a time when we look back on the segregation of kids with disabilities like we do now on segregation by race.

BLOOM: What impact has the film had?

Dan Habib: When I was making it, my public hope was that it would have a big impact in New Hampshire, and my secret hope was that it would have an impact nationally. The impact has far exceeded anything I hoped for. It's been broadcast on national public television, shown at film festivals around the world and translated into 17 languages.

I've given over 200 presentations in 30 states and Canada. It's been an amazing journey.

Learn more about Including Samuel at www.includingsamuel.com.

A great book on strategies to support students with disabilities in the general classroom is The Beyond Access Model, Cheryl Jorgensen, 2010, available in the Holland Bloorview Library.

bloom ~ winter 2010 ~ 19

Welcome to the green room

By Shannon Crossman

Kids with complex medical needs require ongoing nursing care that can make arranging a trip outside challenging.

So at Holland Bloorview, the garden is brought to them.

One minute they're on a hospital floor and the next they're out on the terrace, with the sun on their skin, planting and watering. A raised concrete bed allows kids to wheel up to and access the soil from their chairs.

"Children inside a hospital might not have the experience of seeing something grow," says Kim McFarlane, therapeutic recreation specialist. "This gives them an opportunity to nurture and see their seedlings through the whole life-cycle – pollinating, growing, harvesting and eating. Children of all ages and abilities enjoy the smells and sensations and touches."

Recreation Therapy and Centre for the Arts staff work together to run the program. Here are their ideas for creating an accessible raised bed at home.

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summerfun

Build a raised bed Use your imagination or look online for ‘how-to’ instructions (search “How to make a raised bed”).

You may already have something on hand that can be used for the walls of the bed. For example, in Holland Bloorview’s Spiral Garden, sod strips left over from a landscaping project were rolled inside out and stacked (see photo far right). Then they were faced with more sod to make curved, living raised beds.

If you don’t have anything on hand, visit a gardening or home renovation store and ask for connector corners (metal or plastic) that will work with off-the shelf lumber. Often cuts can be made by the store staff so that most of the work is done before you get home.

Buy non-treated and rot-resistant lumber, such as cedar, that fits the corners you choose. Purchase enough lumber so that you can build the garden bed up to the height of your child’s waist when sitting in a wheelchair. This allows your child to reach in to the bed.

Ask about drainage material for the bottom of the bed. Then purchase triple mix – a blend of topsoil, peat and compost – to go on top.

If you live in an apartment, consider a pot on your balcony as your raised bed. A tall pot can be filled half-way with styrofoam or other lightweight material, then drainage material and potting soil added to the appropriate depth for proper root development. Alternately, set a shorter pot on a table. Check guidelines with your building and consider the weight of soil, water and your planters – they can get heavy quickly. Note that winter temperatures can freeze and kill plants in raised beds and pots.

Choose plants Children enjoy plants that stimulate the senses through texture, colour, scent and taste. Basil, mint, lemon balm and lavender are favourites (they smell sweet and are edible). Mint and lemon balm are great for making herbal tea. Or fill cloth bags with aromatic herbs to make sachets children can keep under their pillow. Red Fife wheat is a hardy heritage variety that kids can plant and then thresh, winnow,

grind and bake with. Tomatoes, in their variety of sizes, shapes, tastes and colours, are always a hit. Try green zebra, purple prince or lemon-boy tomatoes.

We choose heirloom or heritage plants bred for the conditions here in Southern Ontario and perennials native to our areas. These plants have a good chance of settling in and thriving and support our local economy and ecology. They also cut down on the amount of water needed and the cost of buying annuals each year.

Save seeds Leave seed heads on annual plants to ripen and dry or scoop seeds out of tomatoes and other fruits and vegetables. Then store them in labeled and dated paper envelopes in a cool, dry place. There’s a great sense of connection to the life cycle when children save seeds, plant them in spring, and then tend the next plants into maturity.

Make a watering system For areas of the garden your child can’t reach, set up a system of bamboo watering troughs. Choose bamboo about 1.5 inches in diameter, cut to length and split in two lengthwise. Then position to direct the flow of water to the roots. Y-shaped sticks make good supports for the troughs. Use one or two sticks per trough to create the height and stability you need, then lash them on as necessary with some string or garden twine. Make linked troughs for fun twists and turns. Your child can use a watering can to start the flow.

Recycle watering cans Use rustproof paint to brightly colour and seal tin cans that can be used as watering hubs (apple juice cans work well). Rescue them from the recycling and repurpose them, bending over any sharp edges on the rim with pliers. Use a hammer, nail and safety glasses to puncture holes near the bottom edge or in the bottom. This allows water to spurt out playfully.

Position the cans by mounting or hanging them on posts throughout the garden or over a pot. Connect them to the troughs for even more cause-and-effect fun. Have your child fill them up with water and watch the results. bloom ~ winter 2010 ~ 21

bedtime

WHEN SLEEP ELUDES YOU

Imagine your six-year-old child gets up at 1 a.m. four times a week, and won’t fall back to sleep till 5 or 6 in the morning.

BLOOM: When did Tecwyn develop sleep problems?

Bethan Mccutcheon: It was at about a year old, when he stopped napping during the day.

Relatives want you to visit, so you book a hotel and make the three-hour drive. But at 1 in the morning the first night, your oldest son wakes up, begins pacing round the hotel room, and wakes up his younger brother. Knowing nobody will sleep this night, you pack up your stuff and hit the highway for the three-hour drive home at 2 in the morning.

BLOOM: What kind of sleep problems does he have?

This is real life for Bethan McCutcheon and her husband Sean, whose sons, Tecwyn, 6, and Tathan, 5 (photos above), have Angelman syndrome.

Sleep disorders are common in this genetic condition, and according to a Belgian study include falling asleep later, repeated night-time wakings and reduced deep sleep. Despite little sleep, children are alert and active during the day.

While Tathan sleeps most nights, Tecwyn is often up for four to five hours in the middle of the night.

BLOOM interviewed Bethan to find out how the family copes on such little shut-eye.

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Bethan McCutcheon: We can put him to bed at 9 and he’ll get up anytime after 1 in the morning. In a nano-second, he’s upright, down the hall, squealing and excited to start the day. He’s very happy. He may go back to sleep at around 5 or 6 in the morning, or he may not.

BLOOM: What do you do during the night?

Bethan McCutcheon: I often take Tecwyn back to his bedroom and put the indoor lock on his door and stay in the bedroom with him. He’ll pace in his room and take stuff out of the closet and dressers, and occasionally read a book. We have the room set up to be safe. I stay with him, usually for about four hours, till he’s gotten it out of his system, and then I can sometimes get him back to sleep at around 5 or 6. If not, I wake my husband up at 5 and I go to bed for two hours while Sean takes Tecwyn down to the playroom. He wakes me at 7 so he can get ready for work.

BLOOM: What is most challenging about Tecwyn’s sleep problems?

Bethan McCutcheon: It can be exhausting. You have to work as a team with your partner and be honest with what your limits are. If I’m tired, I do something about it. After a bad bout of sleep problems last year I drove to my parents’ house, three hours away, and showed up at midnight and went to bed for 16 hours.

If we have a bad week where I’m up on consecutive days, Sean takes the kids on Saturday morning and I sleep in. We’re fortunate in that I home-school the boys, which means if I can get Tecwyn to settle at 5 in the morning, he can sleep until 9 or 10.

BLOOM: How do you manage on so little sleep?

Bethan McCutcheon: It’s become our norm and most of the time I’m upbeat and positive. We have a system that works for us and allows us to catch up on sleep and plan the day according to how Tecwyn has slept. It would be very difficult for us if I had to work and take the kids to school at 8 in the morning. The only time our situation is really hard is when we’re away from home. Our family lives three hours away and wants us to visit, but we don’t have the coping mechanisms there – the set up of the house and the playroom – that we have here.

BLOOM: What advice would you give other parents?

A lot of families don’t have that flexibility. They have to get back up at 6 in the morning to get the kids off to school. I can see why marriages fall apart over this.

Not only are you dealing with everything about your child’s special needs, but you’re doing it with no sleep. We’d like to have a second source of income, but there’s no way I could work from 3 to 11 because then I could be up all night. Sean tried to drive a snow plough as a second job but if he had to get up at 4 in the morning, he might have already been up all night.

BLOOM: What strategies help promote sleep?

Bethan McCutcheon: We do a bedtime routine each night and on my answering machine I ask people not to call the house past 7:30. That’s when they have a nice warm bath, are powdered and lotioned up, brush their teeth and take their reflux medicine.

Tathan can go straight from bath to bed, but Tecwyn likes to come down to the playroom to sit on the couch and snuggle and watch half an hour of the Disney channel. Then we bring him upstairs and one of us lay down with him until he falls asleep. That could be within 15 minutes or longer. Sometimes when Tecwyn gets up in the middle of the night I’ll repeat the whole bedtime routine again – but at 3 in the morning. I have a lock on the inside of his door just in case I fall asleep, but I never do. I stay with him and let him do his thing and I lay on his bed.

Bethan McCutcheon: My biggest advice would be to be honest with yourself and come up with a plan that works for you and your partner. Don’t compare yourself to what other people are doing or how I cope. For some families, it’s best for the child to take medication to lull them. Other families use speciallydesigned beds that are enclosed at the top, to keep their child safe. One dad adapted it and put a TV inside so the kid can watch DVDs when he gets up.

Some parents try special diets or use heavy-duty shutters in the room or get respite so they can have a break. In addition to coming up with a plan that works for your family, I’d suggest connecting with other families. That can give you a feeling of normalcy and help you cope. We’re on a google group for parents of children with Angelman in Ontario.

The McCutcheons live in Haliburton County in Ontario.

Sleep resources in the Holland Bloorview Library: Better Sleep for your Baby and Child, Dr. Shelly K. Weiss, 2006 Sleep Disturbance in Children and Adolescents with Disorders in Development, Edited by Luci Wiggs and Gregory Stores, 2001

bloom ~ winter 2010 ~ 23

movienight

Film review: Tying Your Own Shoes

By Chelsea Temple Jones

Film may be coercive, but nothing falls flatter than poor representations of disability on screen to viewers with a bit of disability know-how.

Cute kids with intellectual disabilities do not charm me simply because they’re charming in films. People who use wheelchairs don’t inspire me. Telethons with sappy, impairment-themed jingles don’t make me want to empty my wallet.

That’s what happens when you grow up alongside a sibling – in my case, a brother – with a disability. You quickly learn to decipher between infomercial-style disability on screen and the real person you love so dearly.

So, armed with low expectations, I wandered in to the premier of Shira Avni's film, Tying Your Own Shoes, at the National Film Board in Toronto.

It took less than five minutes for my jaw to hit the ground.

Astoundingly, I couldn’t pin down a single disability stereotype. This film was intricately weaving together four fearlessly true-to-life, thoughtful autobiographies of artists with Down syndrome.

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The film begins with Daninah Cummins, an artist who makes her life in Toronto. Bright paint strokes illuminate the screen with colour, and complex patterns and designs crawl among the animations in her story. She speaks of her job, her apartment, a past boyfriend, and, most memorably, her deep connection to her cat, Puff.

“He’s a big orange cat, and he’s very shy,” she explains as a paper cutout of Puff moves along the screen, digging into a heaping bowl of crunchy cat food. Then the animated orange cat softly floats away from its dish of dried food to the hovering clouds above, outlined grey marker. “He used to around with us, and now he’s not around with us anymore.”

Matthew Brotherwood, another artist featured in the film, says this is the film’s most moving anecdote. “I’m watching it, I’m thinking it, when it happens to my cat they die. That’s what happened to the cats I used to have.”

For his part, Brotherwood’s work is carefully styled sketch work telling of his beginnings. He immigrated to Canada from Nottingham, England, and the film

speaks to his life and travels in and around Montreal.

“People are staring at me,” he says referring to his train commutes. “They don’t see inside of me. It’s a bit rude.”

This film encapsulates intricate details and anecdotes that wouldn’t emerge if the film focused on interviews with families, caregivers, academics or other disability experts – as narratives of disability so often do.

“My name’s Petra Tolley,” begins another story. “I’m 36 and don't worry, I'm fine.” Tolley’s artwork intertwines different facets of her life: from living on her own and her black belt in karate to her early childhood memories, set in the backdrop of the Croatian War of Independence in the early 1990s.

Then artist Katharine Newton describes her chaotic life as a daycare worker, and her abstract grids flood the screen with colour as she speaks. She describes Down syndrome, and the other characters join in.

The conversation turns to history, with animated acknowledgements of institutionalization. Then the artists focus on the present. They discuss communication difficulties – how they feel when they get stuck on words, or when they’re asked to repeat themselves. They recall moments of anguish and remorse over having Down syndrome, and acknowledge a shift in their own attitudes towards disability as they grow.

Each artist worked over a light box to create art to be projected on the screen. Attached to the light box was a camera the artist used to take a snapshot of the art in progress. The image then popped up on a computer screen nearby.

So far Tying Your Own Shoes has won three awards, and is nominated for the Japan National Broadcasting Network’s prestigious Japan Prize. “[Down syndrome] means you have disabilities and if you have your own heart to show and give your art to people to show you guys for the animation we did,” explains Brotherwood.

This explanation makes me smile. What a luxury it is to have someone explain Down syndrome so aptly – usually I’m the one droning on about it defensively.

This time, though, Tying Your Own Shoes got it right.

It’s enough to make this big sister mighty proud.

Chelsea Temple Jones is a critical disabilities studies student in Toronto and a journalist.

To learn more about Tying Your Own Shoes, visit http://films.nfb.ca/tying-your-own-shoes/.

“What you see is not always what you think,” Shir Avni, the filmmaker, tells me after the film ends.

“Someone that has a disability may be brighter than you in many ways. And I don’t mean that flippantly, I mean, someone with special needs may be…much more capable than you think and much more articulate and expressive and talented,” she says.

We need to “take the time to listen to them and get to know them more than we have been.” bloom ~ winter 2010 ~ 25

When 21 is the loneliest number Imagine watching your friends' kids depart for university while your adult child stays home with nothing to do and the need for round-the-clock supervision?

How would you feel? Terrified?

Outraged? Resentful?

"This year it really hit me," says Amy Baskin, (right) co-author of More than a Mom, a book on how mothers can stay healthy while navigating the unpredictable world of child disability. "My daughter Talia (left) turned 18 and if she was a typical kid she'd be at university and I'd be an empty-nester. At age 19, most of her services and supports are cut off and not replaced by others.

And at 21, school's done. I expect it will be almost a full-time job trying to piece together a meaningful life for her.�

For parents of adults with developmental disabilities who age out of high school at 21, parenting demands intensify at a time when they typically recede.

Parenting young adults with developmental disabilities can be a combination of 'reverse' parenting and 'marathon' parenting. BLOOM interviewed Amy to find out how parents can prepare.

BLOOM: What do you hear from parents whose kids are nearing age 21?

Amy Baskin: When I interviewed parents for an article I wrote in More magazine, I was shocked by the number of people who said there was nothing out there for their adult sons and 26 ~ bloom ~ winter 2010

reverseparenting daughters. "The plan is we're doing a basement apartment and I'll live as long as possible - literally!" they would tell me. Even for people who managed to get some funding and piece together activities like volunteering and a bit of work and recreation, it's a full-time job managing it. I had one single dad tell me he thought he'd have to quit his job. The bottom line is that we're not going to live forever, so we want our children launched and having a good life well before we're 80 and there's a crisis.

BLOOM: How can parents prepare?

Amy Baskin: The most frightening thing is to do nothing. If you take baby steps, you're going to feel a lot better. The first thing to do is to find out what services for adults with developmental disabilities exist in your area. Ask your children's treatment centre or call Community Living to find out who manages developmental services. We had a case manager come to our house a few years ago. "I know my kid is only 14, but I want to know exactly what exists for her in this community," I said.

She told us about group homes; supported apartments for adults who can live independently and only have someone check on them for a few hours a week; and something inbetween, where about five hours of support was offered during the evening and full-time on the weekends. There were also sheltered workshops and adult day programs for more high-needs individuals, where people were learning life skills and going on outings. Everything had a wait list. Many options didn't seem appropriate for Talia, but I was advised to put my name down on everything. Parents will want to check out community colleges because some offer programs for adults with developmental disabilities.

BLOOM: Okay, so I've got my kid down on the wait lists. What else can I do?

Amy Baskin: Join organizations like Community Living or Autism Ontario and go to their annual general meetings and parent groups to learn about what's going on. I asked what other parents were doing and found out people were using Special Services at Home funding and binding together with other families to piece together supports.

For example, two families whose adult children love animals hired a support person so they could volunteer at the Humane Society one morning a

week. If you're not a member of a parent group, join one. Connect with people in the same boat. In my community in our Autism Ontario chapter, we’ve started a working group for parents of teens and adults with autism. Together with service agencies in our community, we’re investigating creative options to support adults with autism.

BLOOM: What are you looking into?

Amy Baskin: We went on a field trip with agency staff to visit Woodview Manor in Hamilton. They have unique programs teaching young adults with highfunctioning autism life skills so that they can move on to their own semi-independent apartments. They also offer many recreational programs and employment opportunities. We wanted to find out how they got started, how they're funded and whether we could recreate a similar model here in Guelph. We've also asked Common Ground Co-op in Toronto to come and talk to us about how they set up their catering business where the adults are owners of the business.

We're finding that a lot of the best services are initially family-driven: it starts small and when they get more attention, they often get community, corporate or government funding.

BLOOM: It’s overwhelming that this rests on parents.

Amy Baskin: Recently the Ontario Ministry of Community and Social Services created the Services and Supports to Promote the Social Inclusion of People with Developmental Disabilities Act. That means that in the future a planner would sit down with your child and tease out what would make a rich and meaningful life for this person. Parents could also hire a facilitator to help organize workers, go see volunteer possibilities for your child, or help you set up a circle of support with people who want to be involved in your child's life. These types of services will likely become more mainstream, taking some of the load off parents' shoulders.

RESOURCES: Safe and secure, Al Etmanski, 2010 Planned Lifetime Advocacy Network: www.plan.ca Empty nest envy www.more.ca/relationships/family-and-friends/ empty-nest-envy/a/18861

bloom ~ winter 2010 ~ 27

researchhits

Tuning in to the music of kids who can’t speak

Children who can't speak or move respond to their environment in subtle ways that aren't easy to see: their breathing may slow, their skin temperature or sweat level change, or their heart rate speed up.

Parents learn to decipher some of this 'body talk' through close observation, but biomedical engineer Stefanie Blain aims to translate it into a more universal medium: music.

“These children don’t smile when you walk in the room and they don’t make eye contact,” says Stefanie, co-investigator of the Holland Bloorview Biosongs research team. “It’s easy to assume they’re not there, that your presence doesn’t matter. But we’re finding that by tapping into their physiological system, they do respond, they just don’t respond in ways you’re expecting.”

“Words have discrete meanings associated with them.

You can say ‘I’m happy’ and ‘I’m sad’ but that doesn’t quite convey the feeling of it – the more deep and profound feeling. We have thousands of nuanced flavours of emotions that are significantly different, yet we lump them all together and describe them in a single word, which limits the expression of emotion.

Music is a more fluid form of communication.

Stefanie had mapped how children’s physiological signals change when they’re visited by therapeutic clowns, but her graphs “weren’t intuitive and were hard for people to understand.”

Using her musical training she mapped the body signals onto musical elements like melody, chords and a drum beat.

When a caregiver enters the youth’s room, they hear the changes in the child’s body signals through the music, which plays in real-time.

The Biosongs researchers are translating the physiological signals of three youth on our complexcontinuing care unit into songs, then interviewing 12 parents, staff and volunteers to see if the songs convey meaning or understanding for those who know the youth best.

The study involves an interview with caregivers to learn about how they communicate naturally with the youth; times when caregivers interact with the youth while listening to the biological song their signals are emitting; and follow up interviews to see what meaning the caregivers derived from the songs.

“We chose music because it transcends a lot of the natural barriers of spoken language,” Stefanie says.

The research team hopes to publish a study in the New Year. “My dream for this would be to have

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Science

roundup u Study to examine obesity in youth with disabilities Researchers at the University of Illinois at Chicago have received a $2-million grant to fund a fiveyear study into the causes and consequences of obesity among youth and young adults with physical and cognitive disabilities.

children who don’t have any traditional means of communicating hooked up to a device that plays their ‘bio song,’ Stefanie says. “So when a parent walks into the room and hears the music change, they’ll know the child notices them and recognize the child as a responsive, interactive individual. That would mean the world to the child and the people interacting with them.”

However, Stefanie notes that researchers are about five years away from deciphering specific emotions through music created through body signal changes.

Stefanie is now a postdoctoral fellow at the University of Michigan. Patricia McKeever is principal investigator of the Biosongs research, working with Shauna Kingsnorth, Elaine Biddiss, Pierre Duez and Stephanie Chesser.

The project is funded by the Norman Saunders Complex Care Initiative at SickKids.

u Book explores field of children’s rehab engineering A new book covering pediatric rehab engineering approaches from around the world was co-edited

by Holland Bloorview Senior Scientist Tom Chau.

Pediatric Rehabilitation Engineering: From Disability to Possibility "is a first-class international resource that truly speaks to the growth and maturity of the field," Tom says.

u More disabled students attend college, study finds Students with disabilities are attending college in greater numbers and are more involved in volunteer or community service according to a study released by the U.S. Department of Education in November.

u Blind people perceive touch faster People who are blind from birth can detect tactile information faster than people with normal vision, according to a study in the Oct. 27 issue of The Journal of Neuroscience. “Our findings reveal that one way the brain adapts to the absence of vision is to accelerate the sense of touch,” says Daniel Goldreich, PhD, of McMaster University.

bloom ~ winter 2010 ~ 29

researchhits

by Louise Kinross

Caregiver health affects us all I attended a national roundtable on the health of parents of kids with disabilities in Ottawa last month. At the meeting we heard an overview of research to date that’s been funded by the Canadian Institutes of Health Research. This research was conducted by Jamie Brehaut, Dafna Kohen, Peter Rosenbaum, Lucy Lach and their colleagues. Following is a summary provided by Jamie.

The health of caregivers is increasingly important from a policy perspective. For example, it’s apparent that parents who care for their disabled children at home are enormously valuable to the health caresystem, which would otherwise incur considerably more cost providing institutional care. So understanding how to help keep caregivers healthy and providing them with tools to provide effective care makes good fiscal sense. Furthermore, it's becoming clear that caregivers of severely disabled children are only the tip of a very large iceberg.

Childhood chronic conditions can have implications for caregiver health, which may put as many as 25 per cent of Canadian parents at risk for caregiver-related health issues.

In one study of 468 families of children with cerebral palsy, we compared the health of these parents to a random sample of Canadian families. Caregivers of children with cerebral palsy (regardless of degree of disability) were at greater risk for a wide range of psychological and physical health problems, including emotional problems, back problems, headaches, asthma, heart disease, and many others.

In another study using Statistics Canada datasets, a broad definition of childhood health problems that included nearly one-quarter of Canadian families with young children showed that caregivers of children with these broadly-defined health problems were about 2.5 times more likely to report both depressive symptoms and chronic physical conditions.

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While the majority of studies measured caregiver health at one point in time, we used Statistics Canada data to measure the health of caregivers over time, every two years, for a period of 10 years. Results showed that instead of compounding over time, health effects remained relatively consistent.

However, caregiver health was affected by the complexity of the caregiving situation, with caregivers of children with more complex health problems consistently reporting poorer health.

The results of this work suggest that caregiver health is a public health issue, affecting a much broader range of caregiving situations than was previously thought, and potentially affecting as many as one in four Canadian families. There are important psychological and physical health implications of caring for a child with a long-term health problem or disability. And while there are also clear positive aspects of being able to provide care for a loved one, we need to know more about how to set up the conditions for successful caregiving, and whether some challenges parents experience can be prevented with better services and public policies.

This work has spawned several ongoing projects, including one that will use health administrative data to better understand the factors that contribute to caregiver health issues, and another focused on understanding successful parenting strategies in families of children with complex lives.

lifeskills

Show me the money Teaching your child about money can be fun.

Holland Bloorview occupational therapists and lifeskills coaches suggest these tips.

Using money in real life, everyday situations is the best way to learn. o Take your child grocery shopping with you. Give her the responsibility for $20 and a short list of items to buy, for example: laundry detergent, toilet paper and bread. Ask her to find the least expensive items. After checking her choices with you, she can take those items to the cash on her own. o Give a regular allowance. Encourage your child to save a portion. Show him how to track income and expenses. o Teens can be given responsibility for buying their own clothes and toiletries (either from allowance or with a defined amount of money). This is a great way to learn about needs versus wants.

SUMMER MEANS

camp

Money matters resources Check out excellent resources at the Door 2 Adulthood web site: www.hollandbloorview.ca/door2adulthood /tips/moneymatters.htm

If you haven’t got your child registered for camp next summer, now is the time to do it!

Many camps fill up by mid January. Here are some websites to help in your search: www.ontariocamps.ca www.camps.ca (they host a camp fair in Toronto) www.respiteservices.com (to look for a 1:1 support worker for your child, use the CHAP program)

Check out camp brochures and funding sources in the Family Resource Centre on the main floor of Holland Bloorview.

Don’t forget to call the camp director to discuss your child’s needs.

bloom ~ winter 2010 ~ 31

trailblazer

‘You are the expert on your child’ Ann Hovey’s daughter Cailyn (left) was diagnosed with a brain-stem tumour in 2004 just before her third birthday and shortly after her sister Lauryn (right) was born. Six weeks after her diagnosis, Cailyn was given 10 months to live. Ann, a single parent, has seen Cailyn through four brain surgeries since then – including one in New York – two years of weekly chemotherapy, two eye surgeries and almost a thousand hours of therapy. Six years later, Cailyn is still alive, her tumour has been stable for two years and Ann speaks publicly about the critical role of parents on the health-care team. “Professionals are the gatekeepers. They’re the ones who can make it possible – or not – for parents to step up and be the strong advocates we desire to be.”

BLOOM: Why is the parent voice so important?

❁ Who: Ann Hovey ❁ What: An advocate for children with serious illnesses and their families. Ann is an engineer who coached business teams to improve quality. She now speaks at conferences and is writing a handbook on how health-care workers can partner with parents to get the best outcomes.

❁ Where: Waterloo ❁ Why: “Professionals are the ones who can make it possible – or not – for parents to step up and be the strong advocates we desire to be.”

32 ~ bloom ~ winter 2010

Ann Hovey: No one knows your child better than you do in terms of behaviour, typical reactions and personality. So in terms of facilitating how well things work through an intervention, or getting a child to do therapy, or understanding why a child is behaving a certain way, parents have a huge impact. For complex cases, the parent is the only one who is at all the appointments and can provide the most complete information. Cailyn has worked with as many as 15 specialists and I’m the only one who sees them all.

BLOOM: What are challenges to parents being heard?

Ann Hovey: One of the biggest challenges is the historical relationship we have with medical doctors.

We have a history of deferring to doctors because usually we’re in a place of vulnerability when we approach them. We don’t go in saying: “I’m expert 1 and you’re expert 2 and together we’ll resolve this.”

We go in saying “I need your help.” They hold the key

and we feel we hold nothing. When you’re in the business world, you learn very quickly that teams are a way of life and that to solve a problem or improve a process you’re going to be working with others. But for the most part, medical specialists don’t approach work as a group. So when a parent says “I’m your partner, you need to listen to me” they’re thinking “What?”

BLOOM: How can professionals empower parents?

Ann Hovey: Listening opens the door for a partnership. When a professional sits with you, and is not anxious to leave the room and is actively listening to your concerns or suggestions, she is saying “What you have to say adds value. It’s important.” On the other hand, when you deal with a professional who has his hand on the door handle saying “Anything else? Anything else?” you get flustered and anxious, and you can’t think or communicate as clearly.

As a parent on this journey, we know we can’t do things that will save our child’s life, or help them see again, or whatever it is, and that leads to a sense of helplessness and a loss of confidence. Professionals can teach us what we can do to help our children.

They can support our choices for our children when they’re reasonable. They can build our confidence by saying: “Hey, that’s a great observation” or “You’re doing a great job.” When parents feel they’re doing good things they feel more in control and are more likely to contribute positively. And underlying all of this is a structure of hope. When you don’t squash a parent’s natural hope, then the rest becomes possible. If I have no hope, I won’t push through the care plans and the therapy.

BLOOM: What qualities enable parents to be effective partners?

Ann Hovey: In my work with organizational teams, I found that the team members who contributed greatest weren’t necessarily the most educated or easiest to get along with. They had these qualities: they understood their responsibility to step up to the challenge; they believed they had something to contribute; they showed respect for team members; and they believed in the goals of the team. Healthcare providers can help us strengthen these qualities.

when I heard there was no point to surgery because it would ruin the last 10 months of her life I said: “I can’t sign up for that!” But there were a number of practical things I did. I created a list of all of the things I could do to help my child: ‘I can hold her, I can tell her I love her, I can make sure she does her therapy.’ I got Cailyn to visualize her tumour as a cookie that we were going to eat. It was painfully obvious the things I couldn’t do for her, so I needed to focus on what I could do. I also made a list of all of the things I was thankful for. It’s too easy to get caught up in the heavy stuff as opposed to something you’re thankful for.

BLOOM: What other strategies for remaining hopeful do you recommend?

Ann Hovey: In addition to writing a list of what you can do, and what your blessings are, focus on getting through one day successfully. Ask yourself: ‘What can I do to make sure today is successful? What has to happen so I can get to the end of the day thinking it was a good day?’ Maybe it was just that I was going to take Cailyn out for a walk. Another important thing is to ask professionals to prioritize the most critical support or therapeutic strategies. I remember having 25 different exercises I could do with Cailyn and I could barely get through two. So ask: ‘What are the three most important exercises based on my child’s biggest current weakness?’

BLOOM: Do you have other suggestions for how parents can best work with health professionals?

Ann Hovey: We need to make lists of our questions, thoughts and concerns, to ensure they’re covered.

When our questions aren’t answered, we feel helpless. Make sure you record the recommendations of each specialist because you have to bring them forward to other professionals. Parents need to trust their instincts. My approach is to listen openly, seek answers, access other opinions, but when the rubber hits the road, I go with my gut. When a doctor says “Do this,” I know whether or not I feel good about it.

If I don’t, then it’s not the right thing to do. Seek out professionals who are prepared to listen and view your observations as valid. Believe that your contribution is critical because you are the most committed team member and you’re the expert on your child.

BLOOM: How did you maintain a hopeful attitude when Cailyn was given such a dire prognosis?

Ann Hovey: I have a competitive personality and bloom ~ winter 2010 ~ 33

bookshelf

online

u EQUIPMENT EXCHANGE Zach’s List, www.zachlist.ca: The parents of a toddler with cerebral palsy launch a website for Ontario families interested in exchanging used children’s disability equipment.

u Now I See The Moon: A Mother, a Son, a Miracle Elaine Hall, 2010. A mother and former Hollywood acting coach writes about her adopted son with autism and her creation of The Miracle Project, a group that engages children with autism in the performing arts. u Invisible No More Vincenzo Pietropaolo, 2010. Renowned social documentary photographer Pietropaolo records the lives of Canadian children and adults with intellectual disabilities through 100 photos and 35 stories. u Four Walls of My Freedom Donna Thomson, 2010. A mother writes about the value of her son with severe disabilities. Says Jean Vanier, founder of L’Arche: “It is about seeing under the suffering and needs of people with disabilities their value and beauty, their uniqueness and dignity.” u Aspergirls: Empowering Females with Asperger Syndrome Rudy Simone, 2010. Girls with Asperger Syndrome are less frequently diagnosed than boys. Written by an Aspergirl and including stories from 35 women with Asperger’s.

For kids! u Just Because, Rebecca Elliot. 'My big sister Clemmie is my best friend. She can't walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra.

I don't know why she doesn't do these things. Just because.'

34 ~ bloom ~ winter 2010

Freewheels http://groups.yahoo.com/group/freewheels Swap, donate, buy or sell disability equipment in the Toronto area through this Yahoo group.

u LINKS Mental health Parents for Children’s Mental Health http://www.pcmh.ca Speaking of Kids Mental Health www.speakingofkidsmentalhealth.ca Mind Your Mind, www.mindyourmind.ca Rare diseases Children’s Rare Disease Network, RARE blog: http://www.crdnetwork.org/blog

u FACTS The largest longitudinal study of education outcomes of 11,000 American students with disabilities showed that more time spent in a general education classroom was positively correlated with higher scores on standard tests of reading and math; fewer absences; fewer referrals for disruptive behaviour; and better independent living and employment outcomes after high school. The National Longitudinal Transition Study, 2006.

your kids in bloom If you would like to see your child here, please email a high-resolution photo to lkinross@hollandbloorview.ca. We will try to feature as many as possible.

T The he unlimited unlimited Kat atie.

Katie

Holland Bloorview Kids Rehabilitation Hospital: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.hollandbloorview.ca

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