BLOOM Magazine: June 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

Karen Gaffney, Temple Grandin: Are they the exception or the norm?

ROL E M OD ELS

‘I’m still on the bus:’ Best-selling author Jonathan Mooney L IF E SKIL LS

‘The talk:’ It’s one of many for kids with autism RESEA RCH HITS

Therapeutic clowns stir ‘unresponsive’ children

summer 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

SUMMER 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 Bloorview families and parents and professionals who ask to be on our list.

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.

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.

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

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

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

On the cover Penny is “a great gift to us and all who know her,” says mom Amy Julia Becker.

Read Amy Julia’s story on page 6.

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

A CONTEST BRINGING VISIBILITY TO DISABILITY Make a video that changes the way the world views childhood disability. You could win $5,000 cash!

COMING JUNE 17

filmpossible.ca

inthisissue

features

PARENT TAL K

ROLE MOD ELS

RESEARCH H ITS

TRA IL BLA ZER

06 Karen Gaffney, Temple Grandin: Are they the exception or the norm?

10 ‘I’m still on the bus’

24 Therapeutic clowns stir ‘unresponsive’ children

30 For the love of Annie

08 Hannah’s secret: Faith and online friends 09 Dad wins disability funding appeal

LIFE SKILL S 14 “The talk:” It’s one of many for kids with autism 16 A recipe for success

32 At a dark time, bringing light

26 Vaccine study discredited; parent fears remain 28 Neckband turns sounds into computer clicks 29 Science roundup

fresh

departments

SIBL IN G ISSU ES

F ROM THE EDITOR

18 When siblings step in

04 ‘Will he lead a normal life?’

F EED BACK 20 ‘I don’t want to take care of her’

05 Your letters

SEL F -CARE

BOOK SHEL F /ON LIN E

22 Balance: It’s not a frill!

34 New titles, websites, blogs and facts bloom ~ summer 2010 ~ 3

fromtheeditor

‘He’s a great kid. In spite of all the challenges, that’s all that matters.’

‘Will he lead a normal life?’

I remember when my son Ben was a baby, and we didn’t know how he would be affected by his syndrome, I’d ask our pediatrician: “Will he lead a normal life?”

I didn’t realize it at the time, but that question was actually “code” for something else.

I knew the doctor couldn’t tell me whether Ben would lead a normal life.

I know now that whenever I asked that question what I was really fishing for was confirmation of my son’s value. What I really wanted to hear was: “You have a great kid and it’s irrelevant whether he leads a normal life because he will always be a great kid.”

My son was the light of my life and I knew in my heart that he was awesome. But when your child has 4 ~ bloom ~ summer 2010

a disability some people aren’t able to see past the disability and their negative attitudes about it. They may not delight in your child the way you do, and that can be disheartening.

I hope when you finish reading this issue of BLOOM, you take away the message that your child is whole and beautiful and unique and irreplaceable. I hope you feel supported by the community of parents across the world who are featured in BLOOM and write on our blog. I hope you find something practical—from a parent or professional—you can use in your everyday life. And I hope you turn to your child and think: “He’s a great kid. In spite of all the challenges, that’s all that matters.”

Photo above: Louise's son Ben at camp with Coco. Ben was proud of the shiner he got when his sail boat capsized.

u FROM THE MAGAZINE, E-LETTER & THE BLOG

Society is very obsessed with the idea of "contribution to society," whether that be financial or intellectual (The R-word is a hateful slur, February 26). That intellect is highly valued is obvious in the way people treat each other everyday. It saddens me. That we feel the need to feel “better” than others in some way or other, what is that? As far as I’m concerned there is no better or worse, just “is.”

Emma Brooks, Athens, Greece

I just got the Bloom e-letter and was scanning the content. All I can say is Wow. You're doing an amazing job of covering this territory—there's so much to dig into here, and all of it addressed in such a smart way, acknowledging and honouring the human, emotional side while grounding it in the latest research and delving into the moral and philosophical underpinnings as well.

Kim Pittaway, Toronto

I can't stop thinking about the questions you raised (What makes us human? January 12). I also can't help thinking that the folks who view mental disability as a measure of humanity are wandering into a materialistic view of the world—a very cold and heartless view. My little guy has damage on over half of his brain, but I've never met a soul who so utterly relishes every moment of life—he's teaching me how to be a human all the time. Folks are always musing on the percent of use we get out of our brains. My little guy has made me believe it's far more important to measure the percent of use we get out of our hearts. Kudos on a great, thoughtful and heartfelt piece Louise. You're an inspiration.

I read your BLOOM magazine (Winter 2009) and my spirits are uplifted. You have really managed to capture the essence of these kids’ lives. It is not a question of what they can't do, it is what they teach us to do. They are an inspiration.

Barb Farlow, Toronto

I cried reading your reflections about Ben at camp (To infinity and beyond, Winter 2009). What struck me was the giving and receiving—he was able to give such joy to others and they were able to receive him as who he is. He was able to receive help and others were able to give in ways they never had before. What a picture of grace, hope, and beauty.

Thank you!

Amy Julia Becker, New Jersey

I read the last issue of Bloom, and I was very impressed with all the articles! I especially appreciated the entry you made on Down syndrome, and it really made me think about what it is to evaluate the inherent moral and ethical prejudices that stem from intellectual ability.

Adrian Anantawan, Toronto

I am so relieved to read your opinion on the word ‘disability’ (The tyranny of two words, March 3). I have never been able to swallow the ’DIS’ aspect of ability, and still don't understand why it’s such an accepted term. I live in Switzerland and the German term holds a similar connotation towards what CAN'T be done, which makes me sad—especially because it's so engrained that most people don't even think about it. We're all differently-able... able in different ways to live our lives. I wish there was an easy way to say this.

yourletters I am a case manager at Central West Community Care Access Centre in the children’s services department. BLOOM was highly recommended by one of the parents on my caseload and I wondered if it’s possible to get some backdated issues. There were some very helpful articles that would be beneficial to a lot of the families I visit.

Noemi Amero, Toronto

I so get this, Louise and only marveled to find it here on your blog (Sweet sixteen, March 29). I know that you usually write of the "good stuff" that comes with parenting a child with special needs, difficult issues are usually framed in looking on the bright side, etc. It was "good" to read of your own ambivalence because I think your feelings are common and those of us who share them can find some relief when they are articulated so beautifully. I also loved the laughter and humor implicit even in these sobering thoughts. Thank you.

Elizabeth Aquino, Los Angeles

I was so terribly touched by your editorial on The Enough House (June 2009) that I have copied it for each of my colleagues, and many of the families I work with. I also laminated a copy for my own use. It is beautiful and ever so wise.

Sandra MacDonald, Dufferin Child and Family Services, Orangeville, Ont.

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

Tekeal Riley, Bern, Switzerland

David Sexton, New Jersey bloom ~ summer 2010 ~ 5

parenttalk

Karen Gaffney, Temple Grandin: Are they the exception or the norm?

By Amy Julia Becker

A friend gave me a subscription to Parents Magazine before our daughter Penny was born. I remember the headline of an article that arrived when she was six weeks old: “Will Your Child Be Tall?

Athletic? Intelligent?” I answered, “No. No. And no.” I threw the magazine away.

Some good came of my mistaken belief that a baby with Down syndrome had severely limited potential.

It forced me to consider what it meant to love our child exactly as she had been given to us, rather than according to an abstract image of the child I deserved. It forced me to reconsider my notions of fullness in life, to discover the value of every human being regardless of IQ, height, weight, or motor ability.

6 ~ bloom ~ summer 2010

And yet, I look back on my attitude with some mixture of bemusement and dismay. A few months after Penny was born, I started to hear stories about individuals with Down syndrome who had surpassed expectations. I heard about Chris Burke, who played a leading role on the TV series Life Goes On. I read about Karen Gaffney, who swam Lake Tahoe, a feat, in the words of one admirer, equivalent to running three marathons. Later still, reading an article in TIME, I learned about Temple Grandin, a woman with

autism who has earned her PhD and is lauded as an expert in understanding animal behaviour. Most recently, Aimee Mullins, a woman whose legs were amputated as a child, has come to my attention.

Mullins is a model, an athlete, and a spokesperson for the rights of individuals with disabilities.

These people have contributed to a transformed understanding of what it means to be “disabled.”

They have challenged me, yet again, to reconsider my expectations for our daughter. I now say, ”Who knows what she might do?” instead of assuming that I know her limitations. But sometimes I wonder. Are these men and women examples of what every child with Down syndrome, autism or an amputation can do if only given the right motivation and intervention? Or are they exceptional? Are they the Oprah Winfreys and Bill Gates and Michael Jordans of their field? Is it silly to think of my daughter becoming like one of them? Could it be harmful?

On the positive side, Chris Burke, Karen Gaffney, Temple Grandin and Aimee Mullins offer us the face of possibility. Their stories of hope and hard work and achievement against the odds, against the doctor’s predictions and against societal expectations, have a chance of becoming our children’s stories. Their stories teach us to believe in our kids. Their stories teach me not to be so quickly dismissive of questions like those posed on the cover of Parents Magazine.

And yet, their stories offer a caution as well. Holding up only exceptional individuals as possibilities plays into a cultural narrative that values achievement over character and individual accomplishment over relationships. What if our kids don’t measure up?

What if Penny never wins a medal at the Paralympics?

What if she never speaks in front of a crowd? What if she never breaks any records or surpasses the predictions for a child with Down syndrome? If she never does any of those things, she will remain who she is: our daughter, a great gift to us and all who know her.

parents. He told me about his girlfriend, and showed me pictures of himself as a child. He was kind, courteous and humble. And, having now met a number of adults with Down syndrome, I would not say that John was exceptional. But after spending an hour in his house, I had the sense that he, an ordinary man with Down syndrome, had achieved many of the things I want for our daughter.

I’m glad that Penny is growing up in a world where there are men and women with disabilities who have achieved extraordinary things. And I’m glad they get lauded for their accomplishments. But I’m even happier that we know people like John.

Our daughter may or may not grow up to write books or run marathons or go to college. I think I’ve learned to let go of those types of expectations and wait to see who she becomes. She may or may not grow up to be exceptional, but I hope she will grow up to be an example of the potential in every human being to live a loving and gracious life that is as concerned with serving other people as with serving self. To paraphrase Martin Luther King, I hope she will grow up and be measured—not by the list of her accomplishments—but by the content of her character.

Amy Julia Becker (photo facing with daughter Penny, right, and son William, left) is a writer, mother and theological student at Princeton Theological Seminary. You can read her blog at Thin Places: http://amyjuliabecker.blogspot.com/.

Around the same time I started reading stories about exceptional people with disabilities, I also met a man with Down syndrome named John. John is in his late 30s. He lives alone. He goes to work a few days a week with the help of an aid. He spends much of his free time at the local fire station. He doesn’t talk much, and, as far as I know, he hasn’t accomplished anything extraordinary. But when we got together, he sat with Penny, who was about a year old, and made her giggle. He told me about the things he loved: music, his friends at the fire station, his bloom ~ summer 2010 ~ 7

parenttalk

Hannah’s secret: Faith and online friends BLOOM readers asked to hear from parents of children who were healthy and acquired disabilities through illness or trauma. I met Hannah Ofori in 2007 when her daughter Grace was an inpatient at Bloorview following a severe brain injury.

Just as she was to begin kindergarten, Grace, 4, developed a life-threatening illness, spent months on life support and then in rehab, and now requires 24-hour physical care. In spite of their harrowing experience and ongoing challenges, I regularly receive e-mail messages of inspirational words and photos from Hannah, who lives with her family in Montreal.

BLOOM: What are the challenges of Grace's injury?

Hannah Ofori: It’s been difficult for the whole family.

I’m not able to work because caring for Grace is a 24-hour job. Because my husband is the only one working we have financial problems. I do all of Grace’s physical care and she takes all of my attention, because we don’t want her to feel neglected or alone. When we were in Toronto, we received 14 hours of service from support workers each week. In Montreal, we only receive a support worker for 3.5 hours each week. It’s exhausting. At times, my little boy will see me changing her or feeding her and say: “Mommy—you like Grace more than me. I'm sad.” I console him by telling him we all love each other and we’re all cooperating to love Grace because she can’t do anything now. When Grace first got sick, my son would say “I want my old Grace back,” because the new Grace didn't talk to him. My husband is a pastor and we pray for people to be healed and at the same time our child is sick.

It’s very challenging.

8 ~ bloom ~ summer 2010

BLOOM: How do you cope?

Hannah Ofori: God has given us the strength and grace to go through this and we believe he wants us to use our situation to help others. My advice to other parents would be to hold onto their faith, and to reach out to other parents in similar situations. We need each other. My husband and I find that people don't keep friends very much these days. We believe in keeping friends, and staying connected. When Grace came to Bloorview from McMaster, we kept all of our friends from McMaster: families we met and the nurses and doctors and therapists who cared for Grace. Many came to visit Grace at Bloorview. Then we met so many people at Bloorview. If you open yourself up and share your story, you will find other people to support you. We are still in touch with the nurses who cared for Grace at Bloorview, and our social worker, and Grace’s teachers. And I still get messages from the therapists who saw Grace through the Community Care Access Centre. They all want to know how Grace is doing. They make her feel special and they encourage me and make me feel good.

BLOOM: How do you stay connected?

Hannah Ofori: When my children go to school, I go to the computer. I read to keep my mind going because I can’t work. Anything that inspires me I send out to other people to enjoy. We can’t let our situation rule over us. We have to live our life despite what is going on. There is so much support for parents through the computer. I use e-mail and Facebook. I like manipulating pictures and making slideshows that I put songs to and sending them out to people. It’s a hobby. I have met people from around the world who want to know how Grace is doing and how they can help us. I send cards and photos of the family. People send me messages back or call me on the phone to encourage me. These connections keep me going. I don’t know where I would be without them.

parenttalk

Dad wins disability funding appeal In February, an Ontario tribunal ruled in favour of Peterborough resident John Wood after funding for his daughter’s medical needs was cut based on an income cap related to the Assistance for Children with Severe Disabilities (ACSD) benefit. ACSD helps parents with extra costs of caring for a child with severe disability—such as travel to hospitals and wheelchair repairs. The benefit ranges from $25 to $440 per month. John’s daughter Grace, 11 (above), has DiGeorge syndrome, multiple disabilities, and life-threatening heart, lung and airway problems. Costs for Grace’s care totalled almost $23,000 in 2009 as a result of multiple trips to Alberta for surgery.

BLOOM: Describe the costs of Grace’s care.

John Wood: I’m a factory worker, and when I take Grace to Toronto for one hospital appointment I have to take the entire day off and that day’s pay is lost.

When we’re going two to three times each month, those expenses add up fast. Grace is on a bipap at night, and she has one mask that’s replaceable each year under the Assistive Devices Program, but the masks don’t last that long. A new one costs $140 and my health insurance only covers a small portion. Next week we’re flying to Alberta for Grace to have an airway surgery not available in Ontario.

BLOOM: When was your funding cut and why?

John Wood: Last year we were told that our funding of $430 a month was being taken away because we made too much money. The current income cap for a family of four is $63,421—that’s gone up less than 5 per cent in 12 years when inflation has increased 26.2 per cent. The Ministry of Children and Youth Services was well aware of our extraordinary expenses and its decision was cut and dry: no benefit. The first step was to request an internal review. As a result of that, they gave us back $25 a month and a drug benefit card, but I have good insurance at work so the benefit card didn’t help us. I got so angry I said I’m not going to let this go and I filed my appeal.

BLOOM: How difficult was it to prepare your appeal?

John Wood: I did it on my own. I asked the Ministry several times for a copy of their guidelines and they wouldn’t supply them. I found the Ontario Disability Support Program Act and read the ACSD section 224/98 very carefully. I based my appeal on the law.

BLOOM: What did you learn about the difference between legislation governing the ACSD benefit and eligibility guidelines set by the Ministry?

John Wood: Guidelines are bound to law and law is not bound to guidelines. In order to qualify under the ODSP Act, there are four criteria: The child must have a severe disability; reside with the parents; the parents must be primary caregivers; and the parents must have extraordinary expenses. Subsection 3 (1) of the ACSD Regulation 224/98 says that the director shall consider, among other factors, household income. It doesn’t set a ceiling for income in order to be considered eligible. Income is only one consideration in determining eligibility and the Act clearly states that all factors must be considered.

Income alone does not preclude eligibility.

BLOOM: What advice would you give families who’ve been turned down based on income?

John Wood: It’s a two-step process. Keep the letter that denied the benefit, because it has a file number on it. Request an internal review from the Ministry in writing. You can get the address from their website.

State why you believe the denial was wrong and be very specific about why your expenses are extraordinary. If you are again denied the benefit or if you’re given a ridiculously low amount, apply to the Ontario Social Benefits Tribunal for a formal appeal. Once you register with them, you’ll receive a kit to fill out. I strongly advise parents to request a phone hearing because the in-house hearings can take a year or two to be scheduled. I’d be happy to talk with any parent about this.

Go to www.children.gov.on.ca and search for “Assistance for Children with Severe Disabilities.”

bloom ~ summer 2010 ~ 9

10 ~ bloom ~ winter 2009

rolemodels

‘I’m still on the bus!’

As a kid, Jonathan Mooney had dyslexia and couldn’t read. The message that he wasn't normal led him to hate himself. A high school guidance counselor suggested he'd end up flipping burgers.

He defied expectations, graduating from Brown University and publishing two best-selling books.

The Short Bus: A Journey Beyond Normal chronicles his trip across the United States in a yellow special-ed bus where he meets children and adults who share one thing in common: they’ve been told they're broken—by autism, cerebral palsy and a host of other labels.

There’s Jeff, a 46-year-old who’s unemployed, loves math and organizes a monthly lunch for mathematicians at the local university. He times every move he makes on a watch and may have Asperger’s syndrome. Ashley is an eight-year-old girl who’s blind and deaf with a medical condition that causes tumors to grow all over her body. She likes to curse out her teachers in sign language. And Katie is a 24-year-old college student with Down syndrome who works at McDonald’s. She’s not accomplished in conventional ways, but for some reason everyone feels better in her presence.

This book shows how our culture’s idea of normalcy beats the life out of kids who are different and fails all of us.

Jonathan shares his own childhood story as a rider on the short bus and shows us how his perceptions about disability evolve when he has the opportunity to meet children and adults considered outcasts, and instead finds beauty, strength and a common humanity.

BLOOM: How did you come up with the idea of taking a short bus around the U.S. to meet kids and adults with disabilities?

Jonathan Mooney: The short bus is a notorious symbol of disability and rejection in the U.S. After my first book was published, I spent a year touring around America hearing the stories of people who were labeled “abnormal” from many different perspectives. It became apparent to me as a short-bus rider and someone who was still in the process of understanding his own story that my thinking through of my relationship to “normal” and specialed was going to be the glue that held together these other stories. I decided to formalize this journey and that’s when the idea of going around the U.S. and collecting stories came about.

BLOOM: Your own personal story is one of overcoming disability. As you say in your book— “From hiding in the bathroom, to Ivy League student to best-selling author.” But many people you meet on your trip don’t fit that profile.

Jonathan Mooney: I was struggling with being told I overcame my disability—that overcoming disability narrative didn't fit for me. I was trying to carve out for myself, and hopefully for others, a different acceptance narrative. The overcoming narrative situates disability as intrinsically negative and something that should be cured or erased from your life. Your disability is a core problem. The heart of the bloom ~ summer 2010 ~ 11

narrative in my book is about disability being a problem with the environment first and foremost—with the way the kid is treated—as opposed to the kid. The other problem with the overcoming narrative is that it disconnects you from a sense of community or fellowship with others who are told they're not normal. If I’m going to overcome disability, I’m done with it—it’s not a meaningful part of who I am. My own journey is the antithesis of the overcoming story line. The message of the book is I’m still on the bus and I always will be. It’s a meaningful part of my life.

BLOOM: What did you learn on your trip?

Jonathan Mooney: The first thing would be understanding the social construction of normal and how that isn’t a physical fact in the world, but a set of human ideas we construct and deploy in certain circumstances that have a lot to do with power and commerce. The second would be that we can recreate normal in a different way. We’re never going to get rid of it, but we can remake and redefine it in a positive way, and that is really hopeful. And the last thing would be the sense of connection and fellowship I felt with people like Katie and Jeff—and expanding my definition of who my community was.

A huge lesson for me was this little girl, Ashley, who has deaf/blindness—I felt a fellowship with her and with her mother's struggle. That was life-changing.

BLOOM: Often it seems that groups representing different types of disabilities don’t share that sense of community—they may even disassociate themselves from certain types of disability.

Jonathan Mooney: That’s a real challenge for the disability rights movement in general. It’s so fragmented. So people with learning disabilities may get caught up in “You're too disabled, you're not like me,” when referring to people with physical disability. People with wheelchairs may say “You're not disabled enough.” The learning disability (LD) community wants to piggyback on the rights and structures that people with physical disability have created through their own advocacy—inclusion, services and legal protection. But then it turns its back on them. When my first book came out it was celebrated by the LD community. When I decided to include people with physical and cognitive disabilities 12 ~ bloom ~ summer 2010

in my second book, some of those same people said: “Why do you think there's anything to learn from them? Why would you associate learning disability with someone with autism?” There was almost a sense that I was bringing the LD community down.

“At least the LD world is popularized. Why would you jump from that accepted thing into this freak show?”

The construct of normalcy gives people with different physical and mental experiences the common ground of being told ‘you're not normal’ and a sense of fellowship with a whole continuum of folks who have been told that.

BLOOM: How did your perceptions of children with severe disabilities change during the trip?

Jonathan Mooney: I began to see their experience through a rights perspective and not a medical perspective. So for Ashley, her world is organized through the medical model: she's deaf/blind. But at the end of the day, for her mom Deb, it was all about inclusion and access and respect—about rights issues.

Deb said that all of Ashley’s surgeries didn't hurt as much as when she was pulled off the stage after one song at the Christmas concert. That’s a staggering statement. A lot of us would assume that the tragedy for a kid like that would be the surgeries, but for Deborah, the real injustice that hurt the most was that moment. I began to see that for kids with significant medical challenges, a core part of the challenge is a rights issue: a struggle for inclusion and respect and dignity. That was a real lesson for me.

BLOOM: How can we hope to change attitudes when most people don't have the exposure to disability that you did?

Jonathan Mooney: We have to make exposure and inclusion a strategic aim of the movement—whether that’s the larger disability rights movement or a hospital like Bloorview. It’s why programming is a core initiative of what I do. We have a long way to go. Making sure my son goes to school with people who have different abilities and physicalities is how we will raise another generation of people who don't look at people with physical and cognitive disabilities as “other” than themselves.

BLOOM: There’s a sense among the general public that we already do school inclusion well. Yet too often we hear about a kid with significant disabilities being parachuted into a regular class without adequate supports, and the child isn't accepted.

rolemodels Jonathan Mooney: The devil is in the details. Inclusion is not just shifting physical space. It’s a technical project and a moral and ethical project. The old special-ed model says the problem lies in the kid. An inclusion model looks at what happens around the kid. If we want inclusion, we have to shift the area of intervention from the kid to the environment—to the peers and the teacher and what happens around the kid.

Unfortunately, folks continue to do inclusion in a treatment model. That’s detrimental to everyone, because we know inclusion doesn't work without environmental change. Then when it doesn’t work, they blame inclusion.

BLOOM: What advice would you give children with disabilities?

Jonathan Mooney: Believe the people in your life who tell you that you’re not broken and the problem is our narrow understanding of what is an acceptable human being. Come to an understanding of yourself as someone who is valuable and not broken and someone who is facing a civil rights struggle and not a medical struggle. From a practical perspective, become an advocate in your life. And find something you like to do that aligns with your talents, whatever they may be, and see if you can build a life on that. Most children in special education are robbed of the opportunity of developing talents and interests because all their time is spent in interventions and treatments.

BLOOM: How important is language in perpetuating stereotypes?

Jonathan Mooney: Our language is a conduit that reflects and shapes our thinking. The important aspect is the “thinking-through” piece. There’s a temptation to do a rhetorical shuffling of the deck chairs. So we didn’t call LD a learning disability for a while, we called it learning difference, but kids were still in special-ed all the time and the high school drop-out rate was 60 per cent. Activism starts with language and language is a catalyst to exploring our ideas and the way we think about difference. But language change needs to stem from, and lead to, thought change. I'm all about advocating for people who “experience” disability. It makes it not about the person, but the context. People have their physical differences. I will always be dyslexic and someone with Asperger's or Down syndrome will always be someone with that physical trait. But that trait only becomes a disability in certain contexts. The idea is to focus on where someone experiences a disability and how we can change that context.

BLOOM: My favourite part in your book was when you visit Katie, who has Down syndrome. Her world was all about relationships. She doesn't care about winning the card game, and she has her own notion of celebrity, which isn't confined to the images we see in the media, but includes her father, a teacher and her brother. How can we convince the public that people like Katie have lessons to teach us about living a good life?

Jonathan Mooney: We have a notion of a consuming, autonomous individual that is essential to our economy, the person who buys and consumes, and if you can’t do those things you aren’t valuable. The challenge is for people—whether you’re a parent or an individual with a disability— to move from being “patients” to being “agents.” The Latin root of the word patient is to be flat on your back. When you’re a patient, you have nothing of value. You’re going to be treated and cured.

When you're an agent, your self perception informs your belief that others can learn something from you.

What’s the tipping point? When do we shift from thinking of “Down syndrome” or “LD” kids as abnormal people that need to be treated or cured to thinking of them as people with a physical or cognitive difference who can teach us something, people who should be empowered?

BLOOM: What are your hopes for the future?

Jonathan Mooney: For a host of communities who experience disempowerment and medicalization, my hope is that enough of us—whether we're policy makers, writers or bloggers—can challenge that disempowerment and bring an experience of power and competency to folks who are pushed to the margins.

That’s what social change means for me. Can I play my role through writing, speaking and programs to empower and inspire enough other people to name the problem? And the problem is not Down syndrome or Asperger's or ADHD. It’s the fact that people are often robbed of their agency as opposed to empowered. We need to create programs and ideas and books and films that change that.

Jonathan Mooney (www.jonathanmooney.com) lives in Santa Monica with his wife Becky and two young sons. He’s working on two books—one about the neurodiversity rights movement.

In addition to his writing, he speaks on disability and inclusion, co-founded Project Eye to Eye, a peer-based mentoring program for students with learning disabilities, and designs programs that move marginalized people into life-changing careers.

bloom ~ summer 2010 ~ 13

Broaching the subject of sex with your kids is hard. Parents of typical children may get away with a limited discussion. But for parents of kids with autism—who struggle to understand basic social cues and boundaries—comprehensive and tailored education is essential. Service providers like the Geneva Centre for Autism are adapting curriculum to meet the unique needs of children with autism spectrum disorders.

BLOOM interviewed Tricia-Lee Keller, a behaviour communication consultant at the Geneva Centre who leads a parent workshop on social sexual boundaries.

“The talk:” It’s one of many for kids with autism

BLOOM: Is sex education for children with autism a new area?

Tricia-Lee Keller: We’re trying to meet a need we see with families coming to us looking for information. There isn’t a lot of information out there that’s autism-specific. There are resources for individuals with Asperger’s syndrome and high-functioning autism. And we’re adapting some good resources for teaching sex education to people with disabilities to fit the learning styles typical of youth with autism. We use The Circles: Intimacy and Relationships program as a way to discuss different levels of closeness with others and how safe relationships are built over time. Youth with autism often need to be taught in a more concrete and rule-bound way.

BLOOM: Are there unique issues when educating a child with autism?

Tricia-Lee Keller: Three key things come to mind.

If you’re seeing sexualized behaviours in your child, consider first whether it’s coming from a need for sensory stimulation that just looks like sexualized behaviour. Or is it caused by a medical condition—such as a yeast infection or urinary tract infection? The second thing would be to present education materials in a visual format, because children with autism tend to be visual learners. And finally, don’t assume your child has picked up on social cues about sex that other children have picked up on. They may watch a movie that shows two people initiating sex in a matter of seconds, and take that literally—that’s how you have sex—not

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lifeskills understanding that there was a background of the people going on dates and developing a relationship.

BLOOM: What type of information should parents share, and when?

Tricia-Lee Keller: Typically, we would want children to know the names of the body parts and the difference between male and female before entering school. By the time they’re entering Grade 1, they should be able to demonstrate public and private behaviour (for example, closing the door to the bathroom and remaining clothed while in public). There may be delays in reaching these milestones, which tells us that further teaching is required. In the primary ages, we talk about the different people in our lives—a family member, teacher or stranger—and how close or not close they are. Closeness is defined by the 3 T’s— level of talk, touch and trust that is socially acceptable and mutual between two people. Children need to know the difference between appropriate and inappropriate touch. At age 10 to 12, you should be priming your child for puberty: “These are the changes that will be happening to you. This is how to take care of yourself.” Later, you need to teach about how relationships change over time and discuss intimacy. Where there is potential for friendships and dating, we might discuss: “What are the qualities of someone you’re looking for in a boyfriend/girlfriend?”

If sex is possible, talk about how we choose our sex partners and how we protect ourselves against unwanted pregnancy and sexually-transmitted diseases.

BLOOM: When a parent realizes they have to be proactive, what are their biggest concerns?

Tricia-Lee Keller: Many parents think of their child with autism as the eternal child and assume they’re never going to grow up and won’t have sexual needs.

We do a lot of coaching with parents to explain that their 14-year-old has the body of a 14-year-old.

Probably the biggest concern is: “How do I teach when and where masturbation is appropriate?”

Another concern is: “How do I prepare my child for puberty and the changes happening in their body?”

BLOOM: How do parents talk to kids about masturbation?

Tricia-Lee Keller: Part of educating about puberty is to send the message that: “Sometimes you may want to touch your penis or vagina and that’s okay as long as you’re in your bedroom with your door closed and you’re alone.” We teach that this is a private

behaviour and we may provide a visual script that allows the youth to check in: “Am I in private? Am I alone?” This is not a one-time, sit-down lesson, but something that needs to be repeated over time and that takes a commitment from the family. Often there has to be dialogue with the school so that they’re aware this is being taught at home. For youth with cognitive delay, there are videos designed to teach individuals with a disability how to masturbate.

These can be shared by the same-sex parent.

BLOOM: How does your parent program work?

Tricia-Lee Keller: The first three nights are a lecture format. Then there’s a full-day session where parents engage in small, group-facilitated dialogue and can ask questions they have pertaining to sexuality and our resources.

Books and resources related to sex education and youth with autism are available through the Geneva Centre for Autism’s library. The workshop “Understanding Social Sexual Boundaries as They Relate to Autism” is offered this fall. Call (416) 322-7877, ext. 0 to register.

Autism resources

❁ Making Sense of Sex, S. Attwood, 2008 ❁ Asperger’s Syndrome and Sexuality: From Adolescence through Adulthood, I. Hénault, 2006

❁ A 5 is Against the Law: Social Boundaries Straight Up! K. Buron, 2007

General resources

❁ http://puberty101.com ❁ http://www.teachingsexualhealth.ca/ ❁ http://www.stanfield.com/circles-main.html (Circles: Intimacy and Relationships program for youth with developmental disabilities)

❁ www.diverse-city.com (videos, training manuals) ❁ The Ultimate Guide to Sex and Disability, M. Kaufman, 2007

bloom ~ summer 2010 ~ 15

A recipe for success Lemon & Allspice Cookery is a Toronto catering business operated by a partnership of 15 people with intellectual disabilities.

BLOOM interviewed Jeannette Campbell, executive director of the Common Ground Co-operative, which provides support to Lemon & Allspice, to learn more about this novel partnership.

BLOOM: How did Lemon & Allspice get started?

BLOOM: What products do they sell?

Jeannette Campbell: It was started by Carolyn Lemon and her daughter Cathy (in photo far right). Cathy has a developmental disability and was involved in all sorts of programs for meaningful activity and employment, but nothing was solid enough or engaging enough. She really wanted to bake and sell her cookies. The family had a big house with apartments and her mom gave her the top floor apartment to use the kitchen. Cathy started selling her cookies to family friends, community groups and local churches. A couple of Cathy’s friends wanted to get involved and her parents were interested, so they decided to create a business. But instead of a standard business, they created a partnership where the business owners are all adults with disabilities.

Community Living Toronto offered the use of a commercial kitchen in one of their group homes.

Jeannette Campbell: They started out with lemon and allspice cookies, chocolate chip cookies and lemon squares and then added sandwiches, salads and vegetable and cheese trays. As the parents realized they needed a bit of support they pooled their resources and got a job coach to help with baking and selling the cookies and training the partners to use the TTC, because they do all of their own deliveries. In addition to churches, community groups and friends, they were soon selling to businesses and government agencies.

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lifeskills

BLOOM: How does the business work today?

Jeannette Campbell: It has 15 partners, three apprentices, two job coaches and a co-ordinator. It runs five—sometimes six—days a week and has moved from a mom’s kitchen to a commercial kitchen. They’re up around $90,000 to $100,000 in sales each year and have spawned other businesses.

The co-ordinator is a professional chef who not only works in the kitchen but also works with the job coaches at the coffee sheds and makes sure everything is up to standard.

BLOOM: Tell us about the spin-off businesses.

Jeannette Campbell: Lemon & Allspice was the original and then came Common Ground. It’s a cooperative that was created to provide an umbrella of support to Lemon & Allspice and three other businesses. We’re contracted to provide administrative support, pre-vocational training, job coaching, raise funds and oversee the businesses.

Sixty-five per cent of our funding comes through the provincial government and the rest—about $200,000—we raise through our charity. We're funded through the Ministry of Community and Social Services to run a training program for youth aged 18 to 21 who can then apprentice in one of the businesses for three months. The other businesses are called the Coffee Sheds—there’s one in Surrey Place, one at the University of Toronto, and one in Jewish Vocational Services. They’re snack bars that sell the baked goods and sandwiches by Lemon & Allspice, as well as fair trade coffee and other foods. The businesses are social-purpose enterprises. Not only do they have a financial bottom line, but they have a social bottom line. We’re addressing underemployment for people with intellectual disabilities and debunking myths.

BLOOM: Who are Lemon & Allspice's customers?

Jeannette Campbell: They include major banks and law firms, non-profit groups, government ministries and churches.

BLOOM: How does a person become a partner?

Jeannette Campbell: After a three-month apprenticeship, the partners vote to bring them in or not. We as staff don't make any decisions—the partners are in control of that.

BLOOM: What do the partners get paid?

Jeannette Campbell: The partners take a draw every month based on 33 per cent of revenues before the cost of goods sold. Depending on the number of hours worked, they can earn up to $300 each month, which is discretionary income they use to supplement their disability support.

BLOOM: What impact has the business had?

Jeannette Campbell: There’s something about the empowerment that happens when somebody realizes it’s not just that they work here, it’s theirs, it’s that ownership and responsibility that gives them a sense of pride. You see a lot of skills development, particularly in the coffee sheds where there’s a lot of interaction with the public. You’ll hear a partner say: “My family wasn't sure why I wanted to do this because they said I couldn't understand money. Now I can break a $20, I can break a $50. I love making change. I like working on the cash register. I couldn't look someone in the eye. I had a really hard time talking to strangers. Now I’m a self-advocate and do presentations across the province on our business partnership model.”

BLOOM: What advice would you give parents of young children with intellectual disabilities?

Jeannette Campbell: Start cultivating the interests and abilities in your child the same way that you would with any child. Find the gift that your child has and cultivate it. If you can get a group of people together with a similar vision, that’s where the strength comes in. We've got about 200 members in our co-op and only 40 per cent are parents. The others are community members interested in making inclusion work. They include professors and people who run their own coffee shops. Our expertise lies within the membership of the co-op. bloom ~ summer 2010 ~ 17

WH EN S IBL IN G S S TEP IN Pat Ellingson (in photo left) grew up in Vancouver in a single-parent family with six children living on welfare. As one of the older kids, she took on the role of caregiver for her younger siblings, including her sister Carol (centre) who has a developmental disability. What makes Pat unusual is that at the age of 50, she became Carol’s primary caregiver.

Carol had lived with their mother until she died, and came to live with Pat and her partner Carolyn (right) at age 45.

BLOOM: Describe your sister Carol.

Pat Ellingson: She’s 50 and in some ways she’s very high-functioning. She can’t read or write, but there are a lot of things she can do. She’s had a job for 30 years. She works at Burger King and she’s the hardest worker in the place. She’s in Special Olympics and a star bowler. She curls and swims and plays baseball.

She’s a very easy-going person.

BLOOM: What effect did Carol’s disability have on you as a child?

I was one of the oldest in a fairly dysfunctional family and just like we didn’t know we were poor, we didn’t know Carol was any different than anyone else. There were six kids, and she was part of the chaos. It wasn’t until I was maybe 10 or 11 that I realized we have to be more protective of her. We knew she had special needs, but she was one of us. We were worried about a lot of things, but it wasn’t until I was a teen and getting ready to move out that I really worried about Carol. As the main caregiver, I started to think: What will happen to Carol? Who’s going to pay attention to Carol and get her into programs?

18 ~ bloom ~ summer 2010

BLOOM: Siblings often resent that the family revolves around the special-needs child. Was that an issue?

Pat Ellingson: No. Because there were so many kids, and because she had a certain level of ability, no one got any special attention. We were never thinking we can’t have this or that because of Carol, but there was always an underlying, undescribed stress. There were times she was made fun of, and we were always a little on guard, expecting the worst from others.

BLOOM: How did you make the decision to have Carol come live with you?

Pat Ellingson: It was a tough one in some ways but it just seemed to happen somewhat naturally. Carol lived with my mother until she passed away. She went to live with one of my other sisters, but it didn’t work out. We tried to see if she would be accepted into a supported-living program in Vancouver, but we learned she had to be homeless before they would take her. One of the issues was that she did work and was living with family. There are a lot of weaknesses in the system in Ontario, but boy, when you live in British Columbia, it’s the worst. When we knew it

siblingissues wouldn’t work for her to live with my other sister, it became clear that we were the best option.

Sometimes you have to step up to the plate. Whether living with us is best for Carol is a continuing question. We’re now at the stage where she’s been accepted into a Community Living program.

BLOOM: What have been some of the benefits of living together?

It’s made me understand and appreciate her a lot more. At the end of the day I think it’s made me more empathic and accepting, not just of people with challenges, but of people in general. Carol is easy to be with, she’ll do anything, and she makes you realize you can’t sweat the small stuff. Living with Carol has also given me a very different perspective on everything from how health programs are funded to employment. For example, Loblaw’s has a fabulous hiring ethic when it comes to people with special needs, but at Wal-Mart, they’ll take people with special needs as volunteers, but they won’t pay them.

Carol applied for a job at Tim Horton’s and she didn’t even get a call back, and yet the “help wanted” sign was still up the next week. That was a bit shocking.

BLOOM: What does Carol do in her Burger King job?

Pat Ellingson: In Vancouver, she worked on the fry station in the kitchen, and here she’s mostly in charge of cleaning the lobby and tables. Thank God for places like Burger King because it was one of the few places we could get her a job. But what happens is that she’s the hardest worker in the place but she’s taken advantage of. She does all the crap work that the others don’t want to do. But because she wants the job, she doesn’t complain. She's been spit on and even here, one employee hit her and was let go.

BLOOM: What does Carol get out of her job?

It’s self-esteem. She gets paid. And it’s social and gives her a feeling of worth and confidence.

BLOOM: How demanding is Carol’s care?

Pat Ellingson: It’s become part of our life. I think it’s become more challenging the longer she’s been here mostly because we're constantly trying to make it all work as we think it should—as opposed to accepting that if she doesn’t iron her pants that day, what’s the big deal? I always go back to my childhood. If she didn’t iron her pants, it was a reason for others to

make fun of her. But being controlling and protective of Carol is not best for her. We have a basement apartment for Carol. She doesn’t cook for herself. She lives in our house and we’re with her as much as we can be, but I’m not sure we're doing the best thing for her. I work a lot. We don’t have any friends who can come and take care of Carol if we’re not able to be here. The ideal would be a hybrid where she could live with us and still receive services so that she’s kept active and she’s not sitting at home alone or bored.

But the way the support system is set up, unless she’s out of the home, there is no support. We do need a break, but the amount of guilt is terrible. We’ve been away for three weekends in five years.

'The biggest concern that keeps us awake at night is that we're not going to be here forever.'

BLOOM: What’s the Community Living program she’ll be part of?

Pat Ellingson: We’re going to experiment with her living in an apartment within a stone’s throw of where we live. It’s on a floor where there are other folks with special needs from her bowling team. We hope it will give her more socialization on a daily basis—and then we’ll do things with her in the evenings and on the weekends. The biggest concern that keeps us awake at night is that we’re not going to be here forever. If we’re always doing everything for her, knowing she is capable of doing a lot more than we let her, then who are we doing it for? The easiest thing is to leave her where she is—with us— and the hardest thing is moving her elsewhere because this will be more stress on us and probably in the short term, more time required to make sure she’s okay. We want Carol to have a life that is rich and includes all the things she currently does and one where she’s protected—whether we’re there or not. I was in an almost fatal car accident recently and it struck me: What would happen if I wasn’t here?

Thank God I have a partner who is committed to Carol. But she’s 15 years older than Carol. What happens when she’s not here? Who can I leave money to for Carol, and how can I make sure they take care of her? I don’t think you can ever assume that the system will take good and appropriate care of your sibling with special needs. bloom ~ summer 2010 ~ 19

siblingissues BLOOM: What support will she receive through the Community Living program?

Pat Ellingson: They’ve assessed her to receive six hours a week of care from a support worker. But we know she needs daily care, to make sure she gets up and goes to work and is dressed properly. I don't think it’s that they don't understand her needs, but the program doesn’t have the resources. The plus of placing her there is that some of the other folks on the same floor have 24/7 care, so she’ll have the advantage of that, and all of the support is from the same group of support workers. There are also two things she’s been invited to be part of—a special advocacy group where she’ll be trained to be an advocate for special-needs folks, and a food preparation course. It’s unfortunate that these types of things aren't available to the person if you live with family.

BLOOM: What advice would you give parents?

Pat Ellingson: I think it’s important to try to make sure everyone gets attention and to recognize when siblings are helping to care for a brother or sister. I remember my mom would say: “She’s your sister. It’s what you should be doing.” I think highlighting that caregiving is “over and above” is important.

Pat Ellingson is creative head of children’s media at TVO, Ontario’s public education media organization.

WHAT SIBLING STUDIES SAY Much research has been done about the positive and negative impacts of a child with a disability on brothers and sisters. A 2003 study in the Journal of Family Nursing found schoolage children who have siblings with disabilities scored significantly higher in co-operation, assertiveness and self-control than peers with typically-developing brothers and sisters. Yet we also know siblings may resent the attention the child with special needs receives; feel guilty they were spared the disability; and worry about how their sibling is treated. Siblings benefit from the same kind of peer support that parents find in support groups, but often don't have access to sibling groups.

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‘I don’t want An interesting dialogue about siblings of children with special needs and their perceived responsibilities toward their brother or sister, especially as the parent primary caregiver gets older or dies, is going on over at the BLOOM blog.

We worked with an attorney many years ago to set up a special needs family trust to take care of Sophie’s future financially. Sophie (in photos above with her brothers) has intractable seizures. I've read what little literature exists regarding the effects of having a child with special needs in the larger family and believe I sort of, kind of, know what I'm doing.

Just like everything else, though, that comes with the territory, there's a fine line between protecting my boys from taking any responsibility for their sister and the fact that “it is what it is.” I have intentionally paid them “extra” attention and made sure that they can be angry and stubborn and disgusted and sad without feeling guilty about their complex feelings. Given their ages, they can’t possibly be expected to “take care” of Sophie, but I do ask them periodically to check on her in her room and they certainly go into help mode when she has a big seizure and I need their assistance.

Henry, now 11, learned to buckle himself into his car-seat seatbelt, unbuckle himself and jump out when he was no older than three. I didn't realize this was unusual until I drove a carpool and found myself helping the more “helpless” children that I drove, those that held their arms up for me to lift up and out of the seat and then to jump down out of the car. Oliver, too, is probably more selfsufficient than most kids his age and I don't believe that either of them resents this.

to take care of her’ One night, a few years ago, when Oliver was no older than five, he and his brother were in bed and, I thought, fast asleep. I heard Oliver call out to me, so I went into their bedroom and asked him what was

‘I imagined my son lying there in the dark, pondering the deepest, darkest things.’ wrong. “I'm scared,” he said. I asked him why and he replied: “What's going to happen to Sophie when you are old? Who is going to take care of her?” If could have, I probably would have gasped, but I was sort of shocked into silence there in the dark by my very young son's bed. I imagined him lying there in the dark, pondering the deepest, darkest things so I prayed, quickly, that I might answer him correctly. So much of parenting is winging it, no? I told him that Mommy and Daddy would always take care of Sophie or have someone help us to take care of her for as long as we could.

Oliver said: “But what about when you are really, really old and die? Who is going to take care of her?

I don't want to take care of her.”

Again, I could have gasped, but I think I smiled and told him that that was a long, long way off, and that by the time I was really old, he and Henry would be big men and would be able to help to take care of

By Elizabeth Aquino

Sophie. I think the idea of a being a big man appealed enough to Oliver that he was distracted from the larger existential turmoil, so the conversation ended and he went back to sleep.

What the whole exchange did to me, though, was to put into stark reality just how much children absorb and how complex their feelings really are. I don't think I was naive about the “effects” of having a child like Sophie and I certainly have done my fair share of worrying about what the stress of her seizures was doing to them. But the bigger and, I think, scarier issues of long-term care and the boys had not crossed my mind until then.

I imagined my death in the far future and Henry, the compassionate, easy-going son immediately saying that they would have to care for Sophie just like Mom wanted. I then imagined, with my customary dark humour, Oliver saying, “Mom's dead; it's time for an institution” and that thought lightened the heavy load, however briefly (and I would clarify, to those who don't know me, that I'm kidding!).

What I do trust, though, is that each of my sons will figure out what he is capable of in caring for his sister. Parenting mirrors life's ambiguities and while I like to imagine that all will be well when I am old and gone, I also think who knows?

Elizabeth Aquino is a Los Angeles writer and advocate for her daughter Sophie, 15, pictured above with brothers Henry and Oliver. Elizabeth writes at A moon, worn as if it had been a shell: http://elizabethaquino.blogspot.com/.

bloom ~ summer 2010 ~ 21

selfcare

Balance: It’s not a frill!

Parents of kids with special needs know what it's like to live with chronic stress. Amy Baskin (above right) became one of those moms when her younger daughter Talia (left, now 17) was diagnosed with autism. As she traipsed from specialist to specialist, Amy noticed she looked like all the others moms in the waiting rooms: exhausted and overwhelmed. She searched for a book that would help her take care of herself while she tried to get the best help for her daughter. But she couldn’t find one. So she wrote More than a Mom: Living a Full and Balanced Life when your Child has Special Needs.

With co-author Heather Fawcett, Amy surveyed over 500 North American moms of kids with special needs, looked at research on families of kids with disabilities, and spoke to health and career experts about how mothers can hold onto their health while navigating the unpredictable world of child disability.

BLOOM: Why did you decide to write this book?

Amy Baskin: When I was first searching for ways to help my daughter, I never heard about resources for me as a mom and a professional. I had this fantasy that when your child is diagnosed, you'd be told: “Here is a plan for your child. And here is your personal life coach, fitness coach, career coach, and the person who will help with your marriage and make sure everything is on track.” Those coaches didn't exist, so we wrote the book.

BLOOM: What does research tell us about the unusual stresses of special-needs parenting?

Amy Baskin: We looked at old studies and the most current ones, and one thing they find over and over again is that challenging behaviour is most stressful.

22 ~ bloom ~ summer 2010

Physical and medical care isn’t easy, but from a stress point of view, behaviour is a huge issue. Then there are the multiple roles mothers have. Even if the mom is working full-time, she’s usually doing all the case management: booking the appointments, managing the child’s care, dealing with the school, managing behaviour, doing the emotional work. The Roeher Institute found that moms put in an average of 20 to 30 hours of personal care for their special-needs child on top of workforce and other family and household responsibilities. With that extra load comes little time for self-care. And no matter how positive we are, we all worry about what will happen in the future, when we’re no longer there for our child. So there’s too much to do, lots of stress, worries about the future and a lack of control. One study found that parents of children who are chronically ill have cellular content that is like a person 10 years older—stress ages them at a cellular level.

BLOOM: What’s the difference between coping and balance?

Amy Baskin: Moms of children with disabilities have more intensive and frequent periods of crisis. It could be your child’s medication isn’t working, or your child has become depressed, or you’re dealing with chronic behaviour. When we’re in crisis, we just cope. We need to get sleep, to eat, and to have a friend to connect with. But there is no balance. Balance is what we do over time to maintain our physical and mental health because we know our parenting demands are greater and we’re at risk of depression. Balance is about looking after our physical health – sleeping, eating and exercise – and what makes us happy: knowing what you love to do and being able to do it, and having friendships and social connections.

BLOOM: What if we don’t take care of ourselves?

Amy’s #1 coping strategy

Amy Baskin: The stresses start to outweigh the joy and meaning we get from our child. We become negative and bitter. Then we have nothing left to give to our kid.

In really tough times, my number one strategy is exercise. It could be a 10-minute walk or strength training or a fitness class.

BLOOM: What did you find in moms who coped best?

Amy’s balance tips

Amy Baskin: Their child with special needs was not the centre of their entire family’s life, which is really hard to achieve. Every single decision wasn’t made in light of that child with special needs. The happiest moms often had some kind of paid work. When they returned to work, their life felt more balanced and they had another world outside of their kids. Going to work was a break— a time to free their brain from thinking about their child and to get energized before coming back to the family.

Moms who did best were involved in committees and groups that were changing the world to make things better for their kids. They also tended to exercise, used humour and took breaks. They went on dates with their spouses, booked child care so they didn’t feel they had to do everything themselves, and surrounded themselves with help—whether extended family, other parents of kids with special needs, or by using funding to hire university and high school students.

BLOOM: Why is it so hard for moms of kids with special needs to take time for themselves?

Amy Baskin: Guilt is a major barrier. I remember one woman at a workshop said: “I can’t even buy myself a cup of coffee because I know that money could go to my kid’s therapy.” People feel guilty leaving their child with someone else. Our society is so focused on helping the child that if a mom does something for herself, there’s a sense that she’s taking away from her child. The opposite is true. We know we have to fill ourselves up first, before we can give to our child. The better you feel physically and mentally and the happier you are, the more you’ve got to give your kids. Balance is not just a frill!

BLOOM: How can a mom take the first step in self-care when she's feeling overwhelmed?

Amy Baskin: Take baby steps. Look at one small thing you can do for your physical health each day, and add one small pleasure. With physical health, look at the biggest area of need. For example, if you're exhausted, rather than go to bed at midnight, take a bath and go to bed at 9:30. If you never exercise and feel terrible, go for a long walk today. Then add a pleasure: Get that book from the library and try that nice tea you bought and sit down and read for 10 minutes. Or call your best friend. Or do five minutes of deep breathing and visualization.

> Give something up We can’t do it all. I have an exercise where parents write down what they do on a typical morning: from emptying the dishwasher to feeding the child, walking to school, going to work. I have them circle something they hate doing. For that task, they have to get rid of it, do it less often, or hire someone to do it. In my situation, I hate emptying the dishwasher.

So over a number of months I taught my daughter to empty the dishwasher, piece by piece. Now my daughter and husband empty it. I sit in bed and have coffee and my daughter’s proud she can do chores.

> Multi-task Think of fun, physical, social activities you and your child can enjoy together. Going for a walk on a gorgeous day gives you and your child time together, exercise, and may involve social contact. We recently went to a mealassembly place called Supper Works. They had all these ingredients set up with recipes. It was beautifully organized so my daughter could assemble a meal on her own. She felt proud of herself, I got to watch her and hang out with friends and we got six dinners made to put in the freezer when we got home.

> Find summer help Go to your local junior or high school and advertise for a babysitter or support worker.

Students are desperate for work experiences and can be hired at a reasonable rate. A 12year-old can be in the house playing with your child while you’re at home gardening or reading a book. High school students may be able to take care of your child on their own, playing or baking at home or going to the library or park. If you find the right person and train them, that person may be in your child’s life for years. If your child goes to summer camp and has terrific counselors, get their names and numbers and hire them as workers during the year. www.amybaskin.com bloom ~ summer 2010 ~ 23

researchhits

Therapeutic clowns stir ‘unresponsive’ children In the first study to measure the long-term physiological effect of therapeutic clowns on hospitalized children, Canadian researchers show that even a child in a vegetative state and those with profound disabilities respond to the red-nosed performers with changes in skin temperature, sweat level and heart and breathing rate.

“Every child showed a physiological response to the clowns that they didn’t show when watching television, and this included children who can’t express themselves verbally or through movement and who appear to be non-responsive,” says lead author Shauna Kingsnorth, a postdoctoral fellow at Bloorview Kids Rehab. Research shows that changes in body signals are reliable indicators of emotional states.

The study was published February 4 online in Evidence-based Alternative and Complementary Medicine.

24 ~ bloom ~ summer 2010

The scientists measured physiological arousal, emotion and behaviour in eight inpatients at Bloorview over four days. Their conditions included severe cerebral palsy, traumatic brain injury and brainstem stroke. Velcro bands worn around the children’s fingers measured skin temperature, sweat level and heart rate, and a belt around the chest tracked breathing.

On two of the four days, the scientists measured the children’s reaction to watching 10 minutes of a television show. “Television was a good comparison because the TV is noisy and colourful, like the

clowns,” says Stefanie Blain, a PhD biomedical engineering student at Bloorview and co-author of the study. On alternate days, researchers tracked the children’s response to 10-minute visits with Ricky and Dr. Flap (above left)—two clowns who engage them with physical and emotional comedy and music, letting the kids direct the action as a means of empowering them.

Five of the eight youth—aged four to 21—could speak, express emotion through facial expressions and point; two were non-verbal but could show facial emotion; and one child was non-verbal and unable to gesture or use facial expression.

“The physiological data was our main assessment tool and allowed us to include children with profound disabilities who are generally left out of research,” Shauna says. “But we augmented this information with observed information—documenting the frequency of typical expressions of emotion such as smiling, laughing, crying and grimacing—and asking children who could speak to identify their mood by talking about, or pointing to, a card with a face that best depicted how they were feeling.” At the end of the four-day study, children who were verbal participated in a brief interview.

“Most exciting was that every child showed a unique physiological change with the clowns,” Shauna says. “With one child who wasn’t verbal or physically expressive, the research assistant was sure he had been asleep the entire time. But then Stefanie downloaded the physiological data and came running over just

about to cry, and you could see how much the child was responding.”

Children’s skin, heart and breathing signals were pulled more frequently out of resting states or the pattern of the four signals changed when the children visited with the clowns. “They’re subtle cues that can’t be picked up by the eye and demonstrate that clowning has a direct effect,” Shauna says.

But what happy or sad looks like physiologically in one child may be different in another, and more research is needed to decode the signals in children who can’t corroborate how they’re feeling through behaviour or speech.

The study began because the therapeutic clowns at Bloorview wanted a way to evaluate their work with children who couldn’t give feedback in conventional ways.

Study results from participants who could report or show their feelings included significant increases in smiling and laughing and decreases in grimacing when interacting with the clowns, as opposed to watching television. Children who could speak showed a positive change in mood following their time with the clowns and no change in mood following television viewing. child showed

‘Every a physiological response to the clowns that they didn’t show when watching television.’

The findings suggest therapeutic clowning has a direct, positive impact on hospitalized children— including those with profound disabilities—”and provide hard evidence to support its funding,” Stefanie says.

The researchers say physiological tracking is a tool that can be used to evaluate a variety of arts interventions for children with disabilities who can’t express themselves in traditional ways. “In future, if we can identify positive and negative physiological responses, we can use that information to create stimulating environments for children who can’t overtly tell us what they like,” Stefanie says.

bloom ~ summer 2010 ~ 25

researchhits

Vaccine study discredited; parent fears remain In February The Lancet retracted a controversial 1998 study that linked the measles, mumps and rubella (MMR) vaccine to autism. The paper had fueled parent fears about the vaccine, leading to a drop in vaccination rates. The Lancet retraction came after a British medical panel found lead author Dr. Andrew Wakefield “dishonest” and “irresponsible.”

Yet parent activists like Jenny McCarthy insist he’s a hero.

BLOOM interviewed Dr. Evdokia Anagnostou (right), a child neurologist who leads a clinical research program in autism at Bloorview, to understand why.

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BLOOM: Why was the Lancet retraction important?

Dr. Evdokia Anagnostou: For some time we've known this isn’t a credible paper. Ten of the 13 authors had renounced the study’s conclusions, no one could replicate the findings in outside labs and epidemiological studies from many countries have shown no association. But we don’t retract papers because we get false positives. The retraction was based on ethical misconduct. We hope it will add to the growing body of evidence that there’s no link between the MMR vaccine and autism. The concern for me is that we’ve been communicating that the data is inconsistent with the original study for years, and haven’t been able to change the mindset of many in the autism community.

BLOOM: Was the Wakefield paper the study that sparked the vaccine scare?

Dr. Evdokia Anagnostou: The media would like us to say this bad paper started the anti-vaccine culture.

But the truth is that there’s an anti-vaccine culture that is much bigger than autism. This paper found a home in that culture and had huge implications within the autism community, where parents were less likely to vaccinate their next child.

BLOOM: Why do parents remain convinced that vaccines cause autism?

Dr. Evdokia Anagnostou: I think it’s a devastating disorder, we agree on that. The truth is that research into the etiology of autism hasn’t been productive.

We haven't found true etiological agents for autism.

So we have models that say there’s an increased genetic susceptibility that interacts with other genes or the environment to increase the expression of autism. But we haven’t proven those models. For the parents of a child with a devastating illness, the hypothesis of a concrete, environmental agent—a vaccine—causing their child's condition is a very attractive proposition. People have strong emotional attachments to a hypothesis that there is one evil, outside cause that is identifiable and associated with ‘Big Pharma.’ And because the first symptoms of autism occur when most kids get their first MMR it’s easy to make the association.

BLOOM: I think in our culture we struggle to accept that random things happen.

Dr. Evdokia Anagnostou: There is randomness to the combination, or degree of expression, of genes that can turn a functional personality trait into a condition

of dysfunction like autism. In most cases, good traits that have served parents well are passed on in bad combinations. There is a reason autism is not disappearing. A detailed, systematic approach to life is a positive trait in today’s society—it makes for good scientists, bridge engineers and computer scientists.

Autism is what happens when those good traits get expressed more than they should be, or in the wrong combination. For example, being very detailedoriented and double checking your calculations to make sure that you are correct is a functional trait.

But if over-expressed, this characteristic can look like compulsive behavior and all-encompassing interests to the exclusion of anything else in life. It’s not a case of passing on bad traits—which is a common misunderstanding of genetics—and is why many parents are averse to a genetic etiology to autism.

BLOOM: Will we ever understand the cause of the genetic component of autism (why the genes get mixed in the wrong combinations)?

Dr. Evdokia Anagnostou: With very few exceptions, genes are inherited from mom and dad in a random fashion. Current genetics research is focused on what genes may produce susceptibility to autism and, in very rare circumstances, cause autism. At the same time, a whole new stream of research is looking at differences in the expression of genes in children with and without autism. This is of interest because it’s an area where environmental agents could interact with genes to change their expression. But so far we have not identified a single agent for autism. The question of whether vaccines could change something in your immune system that alters the expression of genes wasn’t a ridiculous hypothesis, but we haven’t found any link. The brain abnormalities we see in kids with autism—such as neurons not migrating to the right place in the brain—are ones that happen in utero, not post birth. The question is: Is it possible to have this brain abnormality and not express autism, but be at high risk of autism, and then get an environmental hit after birth that triggers it? That is a critical question we haven’t answered.

BLOOM: Do you think the Lancet retraction will shift parent opinion?

Dr. Evdokia Anagnostou: For people like Jenny McCarthy, I doubt it. The theory has become so engrained. It’s a cause, and they feel they’re changing the next generation.

bloom ~ summer 2010 ~ 27

researchhits

Neckband turns sounds into computer clicks Corvin Cioata is many things: An explorer, a skier, a Scooby Doo fan. Like his mother—a software developer—he’s nuts about computers. But until last year, the nine-year-old couldn’t use one.

Corvin (above centre) has involuntary movements related to cerebral palsy that make using a mouse impossible. He tried finger and eyebrow switches but couldn’t control them consistently. An off-the-shelf, microphone-based sound switch misfired in noisy environments and exhausted him because it only responded to loud vocalizations.

Then Corvin tried the Hummer—a novel switch developed at Bloorview that detects vocal-chord vibrations when a child makes a sound or hums a tune and turns them into computer functions. “It was the first switch he could easily access,” says his mom Varinia.

Wearing a lightweight neckband, Corvin demonstrated the switch while using a story-making software. The program scanned different storylines related to a princess on an adventure. Corvin clicked his choices by making a sound such as “uh” or “oh” when they appeared on the screen—and showed his pleasure with an awesome smile.

“Certain sounds we make and hums cause the vocal chords to vibrate in a pattern that recurs at regular intervals,” says Tiago Falk, a postdoctoral researcher in biomedical engineering at Bloorview and the primary inventor (in photos with Corvin and Varinia).

A sensor the size of a nickel embedded in the neckband sends signals to a microcontroller that detects the pattern and activates a mouse function— such as turning a page in an online book, clicking an icon on the screen, or moving the mouse left or right.

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The Hummer is perfect for children who don’t speak and have physical disabilities that make conventional switches challenging.

A big advantage is that the sensor doesn’t respond to background noises, coughs or other user-generated noises—which can cause false responses in microphone sound switches like the one Corvin initially tried.

Vibrations are produced naturally during voiced speech or hums—no matter how loudly or softly the child vocalizes—so even quiet sounds or silent hums activate the Hummer. In contrast, microphone switches can fatigue users because they require speech of a certain volume.

The current Hummer is a single switch operating one computer function.

A new version is in the works that will allow users to activate a variety of functions based on differences in the pitch and duration of what they say and hum. For example, a quick, low hum might move the cursor right, whereas a slow, high-pitched word would translate into a click.

In future, the system could be used to control voice technology and electronic devices like a TV and lights and to drive a power wheelchair.

“In the short term, it allows Corvin to do school activities like reading and journal writing,” Varinia says. “And in the long-term, it opens the door to a communication device and to accessing environmental controls so he can be more independent.”

Science

roundup u Gestures predict language delay Gesturing at 18 months predicted which children with brain lesions from stroke will have later language delays according to a study in Child Development. Gesture may be a tool for diagnosing children whose language delays are likely to persist, and ensuring they receive intervention.

Music complements medicine

u Swings pose eye danger Challenge: Two children with autism had repeated eye injuries when tiny pieces of metal fell into their eyes from therapeutic swings with metallic suspensions, according to an article in the Journal of the American Association of Pediatric Ophthalmology. The injury is preventable by having children wear safety glasses or wrapping the swing suspensions in a cloth.

u U.S. funds autism trial Bloorview has received an $805,000 grant from the U.S. Department of Defense to conduct a randomized clinical trial to see if Oxytocin—a hormone released during women’s labour and milk let-down—improves social functioning in teens with autism.

Animal research and pilot studies in adults with autism suggest Oxytocin plays a role in social memory, trust and attachment.

u Disabled UK children poorer Children with disabilities in Britain have higher levels of poverty, poor housing and social disadvantage according to a study in BMC Pediatrics. “Given the relationship between positive health, social and education outcomes and poverty and material deprivation, improving the circumstances of disabled children is likely to be crucial,” said lead author Clare Blackburn.

No child likes needles. In Bloorview’s spasticity clinic, calming kids while they received Botox injections to relax tight muscles caused by cerebral palsy was stressful for parents and staff.

Solution: Armed with a guitar, drums, rattles and bells, a Bloorview music therapist and artist meet with the child and parents to assess what type of music will work well to distract and soothe the child. Children try out the instruments, conduct the music and feel more in control. When the needle hurts, they’re encouraged to bang on a drum to get their frustration out.

Results: The procedure time of 10 minutes has been cut in half. About 50 per cent of children report less pain during the injection.

bloom ~ summer 2010 ~ 29

FOR THE LOVE OF

trailblazer ❁ Who: Barb Farlow ❁ What: Following the death of daughter Annie, who had Trisomy 13, Barb learned a “not for intubation” order had been written without consent.

Determined to change what she sees as systemic discrimination against treating children with some genetic conditions, Barb shares Annie’s story at healthcare conferences and ethics and student talks, in medical journals and through her work with Patients for Patient Safety Canada.

❁ Where: Internationally ❁ Why: “Because parental involvement and consent in treatment decisions are critical… If the line is crossed now, on this genetic condition, what other conditions will be crossed?” livingwithtrisomy13.org 30 ~ bloom ~ summer 2010

Annie

When Barb Farlow learned the baby she was carrying had Trisomy 13, her decision to continue the pregnancy “was immediate and innate, and in complete contrast to what I thought I might do,” says the Toronto mother and engineer. She was told the syndrome was lethal, but through online support groups met families whose children were living with Trisomy 13. “It was very important to us that she not suffer unnecessarily, but we wanted to consider any surgical treatments and make ‘best-interest’ decisions for her.”

Barb's daughter Annie (above) was born without the brain and heart defects common in Trisomy 13, but died at 80 days in 2005 after being rushed to a children’s hospital in respiratory distress. Following her death, Barb acquired Annie's records and learned a “not for intubation” order had been written without consent. “This discovery was like the first domino in a long line of questionable events that left us unclear as to whether our daughter’s death was preventable.”

BLOOM: When did you learn Annie had Trisomy 13?

Barb Farlow: After the 22-week ultrasound, the geneticist said: “This is Trisomy 13, 18, or something equally lethal.” We were told she would likely die before birth or in the delivery room. Initially, the research we did suggested these babies were ‘incompatible with life.’ We were confused because it seemed that many of the anomalies they had could be fixed. When I was six months pregnant we found Living with Trisomy 13, a web site for families. We came to know many living children and their families.

BLOOM: How did you decide to continue with the pregnancy?

Barb Farlow: By the time of the diagnosis, I had grown to love my baby and felt very protective of her. I realized the odds were against her

even coming to term, but it didn’t mean I would take steps to end her life. The geneticist said “We don’t do surgery on these kids.” That prompted us to meet with staff from three departments at the hospital to ensure that if Annie needed life-saving surgery, she would be eligible for it. We were told she’d be treated like any other child. We knew surgery might not be indicated for her—that it might be too burdensome or not in her best interest, but we didn’t want the door closed on account of her disability.

BLOOM: What were your hopes for Annie?

Barb Farlow: We wanted Annie to have comfort and happiness and we knew that through loving her we were going to learn so much. With Annie, we took nothing for granted and lived each day to the fullest.

Her first smile was magic.

BLOOM How was Annie affected by Trisomy 13?

Barb Farlow: When she was born, we learned she didn’t have the brain defect or the major cardiac condition predicted. She was seven pounds, with Apgar scores of eight and nine out of 10, which was amazing. She wasn't blind or deaf, which was a possibility, and she didn't have any major structural deformities. As we were rejoicing about how well Annie was doing, a medical fellow asked my husband: “Do you really want to treat this child? She's going to have these disabilities.” He suggested she shouldn’t be treated, irrespective of her physical status.

BLOOM: How did Annie die?

Barb Farlow: We recently received the medical certificate of death and it lists respiratory distress that began one month prior to her death. When we took her to the outpatient clinic two days before she died—because she was having trouble breathing—we were told it might get better on its own and sent home with no tests and no measure of comfort for her distress. Earlier on, a pulmonologist had suspected she had a tracheal disorder, but she was never tested for it. When she was rushed to hospital in acute distress for a tracheal assessment, we were told her trachea was fine, but she had pneumonia.

She didn’t. We later learned that throughout her life, doctor after doctor ignored critical indications of impending respiratory failure. Meanwhile, we believed Annie was receiving full care.

BLOOM: How are children with serious genetic conditions viewed in our culture?

Barb Farlow: Especially with the financial challenges in our health system, I think there’s an element of

anger similar to how people feel when a person is obese or a smoker and needs expensive medical treatment. There's the perception: “This is a choice, a life choice, we have ways of preventing these things.”

I think there are many in health care who see these children this way—as something we can avoid.

There's a perception that if a child isn’t perfect, it’s cruel to bring them into the world. It’s expected that the majority of women will terminate for these conditions. I think it’s a challenge for professionals to have compassion and see value in our children when it’s a road they wouldn't have taken themselves.

Especially when there are limited resources.

BLOOM: How has prenatal testing influenced public perceptions about children with genetic conditions?

Barb Farlow: I believe it creates the perception that we have a cure for these conditions. There’s a sense of “I’ve done all my prenatal screening and testing, I have a right to a perfect baby.” I’ve heard from genetic counselors that more women are terminating for less serious conditions like club feet. I think we need to review whether the training doctors receive allows them to counsel in a neutral way. I found a presentation online by Ontario’s Fetal Alert Network that included a photo of a stillborn child with a deformity related to Trisomy 13 next to a picture of a one-eyed Cyclops from Greek mythology. This was dehumanizing. When a doctor has a patient whose fetus is diagnosed with Trisomy 13, what picture will come to his mind? Annie had an extra finger on both of her hands. But she wasn’t less human.

BLOOM: You share Annie’s story across North America. What do you hope to achieve?

Barb Farlow: I hope I’ve opened the eyes of healthcare providers to how a family makes decisions and how they feel. I think there’s a group-think approach in health care to issues related to disability. Everybody does what everybody else is doing and no one thinks for themselves. I believe a lot of denials of care are tacit and “let’s all do this because we think everyone is doing this” and based on the assumption: “These kids are hopeless and no one wants them.” I hope I’ve changed that. We know that our decision was not a common one, but we believe parental involvement and consent in treatment decisions are critical. The issue is consent, and if the line is crossed now, on this genetic condition, what other conditions will be crossed? Down syndrome is also a genetic condition in every gene, and we don’t call it lethal. Sometimes children with Down syndrome have things that need to be fixed, and we fix them. bloom ~ summer 2010 ~ 31

AT A D A R K T I M E , BRINGING LIGHT trailblazer

Sue Robins remembers what it was like to learn her son Aaron had Down syndrome shortly after his birth.

❁ Who: Sue Robins ❁ What: Co-founded a visiting parents program for parents of new babies with Down syndrome. The volunteer program has 16 trained parents, including four dads.

❁ Where: Edmonton ❁ When: 2005 ❁ Why: “To give information and support to parents who often feel very alone. We want to celebrate the baby’s birth and sometimes that gets missed in the medical community.”

Sue has resources to share with parents who’d like to set up similar visiting parents programs. She spoke at the World Down Syndrome Congress in Dublin last summer and can be reached at sue.robins@shaw.ca.

32 ~ bloom ~ summer 2010

“We didn’t reach out to anybody. I remember lying in bed and thinking I wouldn’t get out of bed again. I was never going to laugh again or have a sense of humour. All the joy in my life had been taken.”

Six years later, she knows what would have helped: connection with another parent of a child with Down syndrome—someone who understood how she felt and could impart a sense of hope for the future.

When Aaron was five months old, Sue contacted the Edmonton Down Syndrome Society (EDSS). She asked to be connected with other moms of babies in the area and started an informal playgroup. Two years later, Sue co-founded the Visiting Parents Program at the EDSS. Today, the volunteer program has 16 trained parents— including four dads—and has made 31 visits. The program is targeted to parents of a new baby with Down syndrome, but

also serves parents who have received a prenatal diagnosis or who have a child with Down syndrome and are new to town.

We interviewed Sue about the program.

BLOOM: What’s the purpose of visiting parents?

Sue Robins: To give information and support to parents who often feel very alone. Even at the time of birth, if there’s a question mark that the child may have Down syndrome, the parents are shuffled off to the private room at the end of the (maternity) hall, so right from the get-go they feel different. Our presence helps them know that they’re not alone. We want to celebrate the baby’s birth and sometimes that gets missed in the medical community, where the baby is looked at as a tragedy. We’re excited about meeting the new babies and holding them and for some parents that’s the first time that’s happened and it’s very powerful. We help normalize their experience.

BLOOM: What can a parent offer that a professional can’t?

Sue Robins: We’ve walked down the same path these parents are on and a lot of what we impart is hope.

We value and feel there’s worth in our children and we model that. We demonstrate that life goes on.

We complement the role of health professionals by providing the human piece. Only we know what it’s like to have kids with Down syndrome.

BLOOM: Are there key things you try to convey?

Sue Robins: We don’t want to talk too much. We want to listen and to be open and non-judgmental.

Parents can be totally honest with us. We’re there to answer questions. We want them to know they’re not alone, that they’re well supported with services in Alberta, and we like to give them a little glimpse into the future, if they’re open to that. We bring a little photo album of our kids and leave it on the table. If they want to look at it they can, but they don’t have to.

BLOOM: How does your program work?

BLOOM: What kind of impact do you have on new parents?

Sue Robins: Most parents contact us by e-mail through our web site, but we also get calls from pediatricians’ offices, hospitals and genetics clinics.

Within 24 to 48 hours we’re in touch by telephone.

Sometimes a phone call is all parents need. If they’d like a visit, two of our parents will meet them where it’s convenient—in their home, the hospital, a coffee shop. We like to bring a gift. Depending on the family's needs, it may be a book of parent stories called Gifts: How Children With Down Syndrome Have Enriched Our Lives, or a more medicallyoriented book. Sometimes we bring a baby blanket.

Sue Robins: I hope we lighten their load. I remember one visit we did in a hospital NICU where the father of the baby left after learning the baby had Down syndrome. When we first met the mom, things were really heavy and sad. One of us was cuddling the baby and at the end of the visit, the mom had a good cry—and we cried a bit too. We say it’s okay to cry.

The social worker later told me that when the mom walked out of the room with us, she looked lighter, she acted lighter. We had helped take some of that burden off her.

BLOOM: What are the most common questions you get at visits?

Sue Robins: A big one is: “How do I know how severe my child’s condition is?” We explain gently that there’s no way of knowing how your child will turn out, just like with any other child, it depends on a lot of factors. Many parents see the baby and not the Down syndrome, and they worry about when others will start to “see” Down syndrome in their child. They want to known if people stare at the mall. Often there are concerns about how to tell friends and family. We let them know there’s no right way to approach these things, it’s something many parents struggle with, and give them permission to figure it out in their own time. We share examples of what we and other families have done. Sometimes they want information on services.

BLOOM: What do you get out of visiting parents?

Sue Robins: I’d love for every single parent to feel supported. Part of my healing process is to ensure that my experience of feeling alone at the beginning isn’t what others experience. That’s very rewarding to me.

BLOOM: How did you start the program?

Sue Robins: Another mother and I went to Calgary to hear about a visiting parents program there. On our drive back, we decided we wanted to bring the idea to Edmonton. So we brought a trainer from the Canadian Down Syndrome Society to run a six-hour workshop with the first eight parents on our team.

We wanted to have a formal program where everyone on the team is trained. Professionals have to believe we’re competent in order for it to work. bloom ~ summer 2010 ~ 33

bookshelf

online u FACTS u The Wisdom of Sam: Observations on Life from an Uncommon Child, D. Gottlieb, 2010. The story of a grandfather with quadriplegia and grandson with autism. u The Disability Studies Reader, Lennard Davis (editor), 2010. A collection of scholarly essays that strikes at the concept of normalcy. u The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome, S. Schilling, 2010. u The Down Syndrome Transition Handbook, J. Simons, 2010. Preparing your child to move from high school and home life to adulthood and independence. u Disability Theory, T. Siebers, 2008. A groundbreaking contribution to disability studies. u Why Jeffrey? Why us? C. Edwards, 2010. One family’s journey with a son who has a severe brain injury at birth.

For kids! u My Brother Charlie, H. Peete, 2010. Preschool to Grade 2. Twins Callie and Charlie have a lot in common, but they are also very different: Charlie has autism. Callie narrates the story, describing autism. The theme is of love, patience, and acceptance. u Sour Puss, S. Leal, 2010. Madi and her brother Colin find out what happens when their mom closes “the complaints department.” One in a series of four about Madi, who has cerebral palsy and is non-verbal. Visit www.cinnamonfreckles.com.

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In an online survey of 1,293 parents of children with disabilities, 64.7 per cent said their child had been restrained, secluded or subjected to aversive interventions.

Restraints included strapping the child to a chair, using basket holds, four-point holds with one adult holding each limb, twisting the arm behind the back, turning off wheelchair and using handcuffs. Aversive interventions included denying restroom all day; holding nose to force a child to swallow; kicking, punching and choking; putting spit on face; and pushing into a wall. The most common person involved in the procedures was a paraprofessional and 66% of respondents said they rarely or never were informed when an intervention had been used. Most had not approved of the procedures beforehand.

The study was published in Research and Practice for Persons with Severe Disabilities, Winter 2010.

u BLOGS The Flight of Our Hummingbird http://ourhummingbird.blogspot.com A California mom writes about her baby daughter with an unbalanced chromosome translocation.

Enjoying The Small Things http://www.kellehampton.com A Florida photographer blogs about her daughters, including the recent birth of her baby with Down syndrome.

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

Fundraising

for Respite Vito’s a dad on a mission!

His goal is to raise $1 million to ensure Bloorview’s Respite Care programs are funded in perpetuity for children with disabilities.

Don’t miss your chance to help Vito reach his $1 million goal for Respite Care Programs.

www.bloorviewkidsfoundation.ca

For more information, visit www.bigioni.giftsofpossibility.ca.

Bloorview Kids Rehab: 150 Kilgour Road, Toronto, ON M4G 1R8 | Tel: 416-425-6220 | www.bloorview.ca

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