BLOOM winter 2014

WINTER 2014

AROUND THE WORLD

POINT MAN A Paralympian basketball hero talks about growing up ‘black and disabled’ in London with his sister with Down syndrome

TRAILBLAZER A Supreme Court justice reflects on lessons learned from a son with autism PARENT TALK A mother finds meaning via Buddhism SIBLING ISSUES Study finds living with a disabled brother or sister is a risk factor for emotional problems CARE NOTES Create a sensory oasis at home

BLOOM ~ winter ~ 2014 ~ 1

WINTER 2014

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

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

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

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

CONTRIBUTORS PUBLISHED BY: Holland Bloorview Kids Rehabilitation Hospital WRITER AND EDITOR: Louise Kinross DESIGNER: Claire Falcon Restituto PRINTER: Continental Press HOLLAND BLOORVIEW KIDS REHABILITATION HOSPITAL Holland Bloorview is Canada’s largest children’s rehabilitation hospital.

Our vision is to create a world of possibility for kids with disability.

We pioneer treatments, technologies, therapies and real-world programs that give children with disabilities the tools to participate fully in life.

DISCLAIMER Articles in BLOOM are not a substitute for professional medical advice. Resources listed in BLOOM do not signify endorsement

by Holland Bloorview. Where appropriate, please consult your physician.

CONTACT US EMAIL: lkinross@hollandbloorview.ca TEL: 416.424.3866 or 800.363.2440 FAX: 416.425.9332 WARMLINE: 1-877-463-0365 MAIL: Holland Bloorview Kids Rehabilitation Hospital 150 Kilgour Road, Toronto, ON M4G 1R8

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Family education

BLOOM wins social-justice award

Find out about student rights and school board responsibilities at this workshop on education law by Pro Bono Law Ontario.

Last month the BLOOM blog won first prize in the Activism and Social Justice category of the 2013 Canadian Weblog Awards. Over 30 jurors adjudicated 492 weblogs using 10 criteria, including originality, authenticity and usability.

Feb. 6, 7-8:30 p.m.

Holland Bloorview Room 0W225 To register, call 416-425-6220, ext. 3319 or e-mail resourcecentre@ hollandbloorview.ca BLOOM speakers Immigrant mothers face unique barriers in getting the services their children with disabilities need.

York University researcher Nazilla Khanlou shares the findings of her study on 30 immigrant moms in the Greater Toronto Area and their service providers.

Feb. 13, 7-9 p.m.

Holland Bloorview Conference Centre RSVP to lkinross@ hollandbloorview.ca. Book a playroom spot by calling Daniel at 416-425-6220, ext. 3438.

Legal advice Do you need advice about housing, school or immigration law? Our new onsite lawyer offers free legal assistance on non-medical issues to Holland Bloorview families with low to moderate incomes through Pro Bono Law Ontario.

Ask your clinician for a referral or drop by Holland Bloorview’s Family Resource Centre.

Honour excellence Know a person, team or organization that makes the world a better place for kids 2014 with disabilities?

Go to www.hollandbloorview.ca, click on Circle of Honour and submit a nomination for Holland Bloorview’s highest honour.

Bookshelf Raising Henry: A Memoir of Motherhood, Disability and Raising Henry Discovery, Rachel 0 Adams, 2013.

A Columbia University professor and literary critic writes about the unexpected arrival of her son with Down syndrome.

A Memoir of

Motherhood, Disability, & Discovery

r a c h e l

The Science of Making Friends, Elizabeth Laugeson, 2013. A step-by-step guide for parents of teens with social challenges.

a d a m s

inthisissue Features AROUND THE WORLD 06 Ade Adepitan takes on life like Indiana Jones PARENT TALK 13 ‘Nothing is permanent’ SIBLING ISSUES 17 Disability puts sibs at risk for mental-health issues, study says CARE NOTES 21 How can you bring a soothing oasis home?

ROLE MODEL 23 A life revised: Irene after brain injury TRAILBLAZER 29 Sitting in judgment: A Supreme Court Justice sees society through the eyes of her autistic son RESEARCH HITS 34 Software helps kids with autism track anxiety 35 Science roundup

Departments RESOURCES 02 Family education, speakers and bookshelf FROM THE EDITOR 04 Real bodies, real beauty FEEDBACK 05 Your letters and comments

ON THE COVER British Paralympian Ade Adepitan describes his life as a series of adventures. As a toddler with polio, he moved with his parents from Nigeria to the U.K. Ten years later, the family was reunited with Ade’s sister Omoyile, who has Down syndrome. Since then he’s represented England as a wheelchair basketball champion, become a well-known TV actor and presenter, made four films and worked with the United Nations to advance the rights of people with disabilities. See page 6. Photos by Kelly Hill.

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fromtheeditor

Real bodies, real beauty No human body looks like the perfectly proportioned, glossy mannequin you see in a store window.

But what if those storefront replicas followed the outlines of real bodies, including those with physical disabilities?

What would that say about our willingness to claim beauty in all of its forms?

To honour International Day of Persons with Disabilities, shop windows in Zurich displayed mannequins with the shapes, curves and height of real people with amputations, short stature and a curved spine.

The video of how this project came to be is one of the most beautiful things I’ve ever seen.

Participants arrived for their mannequin fitting by cane and in wheelchair. Meticulous measurements were taken and drawings made of their body and limbs. “What about the shape of the foot?” one man is asked.

“There are just three toes,” he responds.

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And this unique detail is reflected in his mannequin, which is unveiled with the others to a collective gasp of surprise and joy.

“It is special to see yourself like this,” says one woman, hugging the wavy torso on the model that depicts her bent spine. “When you usually can’t look at yourself in the mirror.”

Her mannequin was then draped in a black, sparkly cocktail dress and placed in a shop window on Zurich’s main street, along with the others.

Pedestrians were “astonished, touched and irritated,” says Mark Zumbuehl, head of communications and fundraising for Swiss disability group Pro Infirmis, which spearheaded the project.

Most important, the video of the project— called “Because Who is Perfect? Get closer”— has been viewed almost 10 million times online. You can search it on Youtube.

Why shouldn’t diverse bodies be at the centre of fashion?

feedback FROM THE MAGAZINE, E-LETTER & BLOG

As an educator for young children, I understand your earnest concern about the indifference that is applied to culture when assessing children’s development (Let’s find the missing familycentred care pieces, Dec. 16). I am very disturbed about how a young child can be labelled as ‘developmentally delayed’ because certain factors, such as culture and economics, were not considered in his or her assessment.

Anonymous, online I’m never overcome, and I am by this story (‘You are going to be Dads,’ Dec. 2). There’s something about the simplicity of it—and great risk—and the love just pours out and through. Thank you for making this world a beautiful place, Rob and David!

Elizabeth, Los Angeles Your writing is always so illuminating, shining the most obvious questions in the most obvious places (Isn’t a person more than a brain? July 17). Do you know this is the first time I let myself cry about the tragedy of Ethan Saylor’s death? This has scared me so deeply. I have read about his horror story many times and have repeatedly felt physically nauseous, but I couldn’t bear to let it touch me deeper: a frightening reality for a mother of a daughter with Down syndrome. The questions remain about what it means to be human, what we label as weakness, how we make space

for that inside ourselves, how we treat others when we’re threatened, how we forgive such unforgivable actions, how life goes on with such injustices and how we keep moving forward with and in spite of it all.

Tekeal Riley, Bern, Switzerland Eric, I couldn’t agree more with your comments about the vital importance of respect, humility and listening (Families teach this OT student key lessons, July 8). Must say, I feel proud that you are an OT student with us at University of Toronto and I’m certain you’ll be influencing your peers and your teachers! You’ve summed up much of what it means to constantly strive to be a critically reflective practitioner.

I get this; oh boy do I get this.

My Charles (by most everyone’s account) is fun, funny, a good friend and yet, the invites are invariably one way. And I find it hard to be nice to these moms that talk about how great he is one second, but allow their kids to exclude him the next.

My kid is fun. It’s sad that most people will never know it.

Amy Dietrich Hernandez, online

Gail Teachman, occupational therapy lecturer and researcher, University of Toronto It’s been 30 years since I had to walk by the cliques of PTA moms who chose to ignore both me and my two adopted, special-needs kids (The invisible mom, June 26). I can close my eyes and feel the pain all over again. I still live in town, and I see many of those moms, some of whom now face physical challenges of their own as we are all now in our 60s. Although I try, I just can’t muster any sympathy for their problems. My hurt is that deep and that enduring.

Anonymous, online

Comment on these letters or send your own to lkinross@hollandbloorview.ca BLOOM ~ winter ~ 2014 ~ 5

Ade Adepitan takes on life a Jones like Indian

‘When you live in London and you have a disability…every journey is like an adventure and you might as well be crossing through valleys and swimming rivers and stuff.’

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aroundtheworld

Ade Adepitan (left) is a British Paralympic basketball champion, actor and filmmaker whose documentary Journey of My Lifetime took him back to his homeland of Nigeria to investigate why the country has yet to eradicate polio, which he contracted there as a toddler.

Ade’s older sister Omoyile has Down syndrome, so he has a unique perspective on physical and intellectual disability.

BLOOM: Your family moved from Nigeria to London for better prospects for you, but your sister had to stay behind.

Ade Adepitan: They had to beg, borrow and steal everything they could just to get themselves over to the U.K. At the time in the ’70s if you didn’t have a British passport and you wanted residence you weren’t allowed to access the National Health System for two years.

Photos by Kelly Hill

So my parents had to pay for all of my health care for two years off their own back. And when you come from Nigeria, what people earn in the U.K. in a month they would hope to earn in a year. So my parents had to pay for braces, operations, sometimes going into hospital.

My dad and mom were qualified as teachers but because they were black they couldn’t get professional jobs here. They had to work as cleaners and security guards. My mother and father had to leave their whole family in Nigeria, and my older sister had to stay with my father’s sister. She would have been four or five (see photo, right).

BLOOM: What was it like when Omoyile joined the family 10 years later?

Ade Adepitan: It was strange because I didn’t know she had Down syndrome. I left Nigeria when I was three and you don’t understand what Down syndrome is at that age. My parents were really happy but it was also quite difficult.

I was 13 and just starting to become a teenager and she was 14 or about to turn 15. It was like getting to know a stranger. Except because she had Down syndrome she had a mental age of about seven, so she was my older sister but she was actually younger than me. All of those things were complicated and difficult to understand.

BLOOM: How did your parents talk about disability?

Ade Adepitan: My parents were of the philosophy that we should never be talking about disability but talking about our ability.

They weren’t keen on me using a wheelchair and wanted me to walk all the time because they thought if I used the wheelchair it was like me giving up. So in those terms it was quite difficult and you could maybe almost say my parents were a little backwards about disability.

But in the context of education my parents were very adamant that I go to a mainstream school and not a disability school and fought hard for me to go there.

And even though my sister went to a special school, my dad fought hard for her to get a City & Guilds qualification in catering, which normally children with special needs don’t get. So my parents were very pushy in one respect.

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BLOOM: Was it challenging for you to accept your sister?

Ade Adepitan: She was the first person with intellectual disability I’d ever met.

You’re a teenager and you go through that moody stage where it feels like the whole world is against you. Then this sister comes along and she needs a lot of attention.

I was still going through ‘How do I get over the fact that I’m disabled and have a physical disability?’ and you want to fit in and you don’t want to be different. I’d almost come to terms with that and I was thrown this curveball: now I’ve got a sister with an intellectual disability— that was like a double whammy for me.

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BLOOM: In The Guardian you talked about how it was important to your parents that you walk.

Ade Adepitan: For my parents who came from an African culture, there was a lot of stigma associated with being in a wheelchair. Even in the U.K. in the ’80s there was a lot of stigma. It was really important to my parents that I walked on [iron braces] to my school which was a mile away.

It was a really hard walk and then my school was a massive school so getting to lessons was really difficult and there was no lift or ramp, so I had to climb the stairs. By the end of a school day I was exhausted.

aroundtheworld

BLOOM: You’ve said that once you learned how to use your wheelchair it was freeing.

BLOOM: You’ve spoken about how you joined a basketball team that gave you confidence.

Ade Adepitan: When I finally started to use a wheelchair I was really embarrassed for my able-bodied friends to see me in it. But once I got over that it was a godsend and it changed my life.

What the wheelchair gave me was independence.

Ade Adepitan: This basketball team was set up by some physiotherapists. They wanted to make the young disabled individual as independent as possible as quickly as possible, because they knew that in later life to be able to go out and have the confidence to travel around London and be yourself in front of people and not be ashamed of it, you had to be built up and prepared for hardships.

A lot of people ask me why I got into sport, and the most important reason was that I knew if I was fit and strong, I wouldn’t have to rely on anyone.

Once I was in a wheelchair I could travel long distances. Walking a mile would take the best part of half an hour, but I could push it in my wheelchair in five or six minutes. You can imagine the kind of independence that gives you.

BLOOM: Yet when I’ve been in London I’ve been struck by how inaccessible the tube and train are.

Ade Adepitan: When you live in London and you have a disability you have to be almost like Indiana Jones. Every journey is like an adventure and you might as well be crossing through valleys and swimming rivers and stuff. Most of London’s transport system was built during the Second World War and it’s inaccessible.

When I joined this team I met a load of people around my age and they were extremely confident. They were way more confident than my able-bodied friends, more adventurous and they took more risks. I thought they were cooler than my able-bodied friends.

‘

I had the added thing of being one of the few black people in the U.K. I was black and disabled and I felt like I was being hit on all sides.

It took a long time for me to embrace my disability.’

BLOOM: What stereotypes did you face growing up?

Ade Adepitan: In the ’80s when you were in a wheelchair or had any sort of disability people assumed you weren’t as intelligent as other people and they overlooked you, they didn’t really talk to you. Some people called you names like “cripple.”

For me I had the added thing of being one of the few black people in the U.K. I was black and disabled and I felt like I was being hit on all sides. Just the fact of people staring some days made me feel really uncomfortable. It took a long time for me to embrace my disability.

There was quite a period where I was ashamed.

BLOOM: You’ve said the team gave you a sense of belonging.

Ade Adepitan: Yes. As I started to play more sport I gained a lot more self-esteem. When you’re good at something it boosts your confidence but it also gains you respect from your peers, especially your able-bodied peers. Rather than shying away from disability I started to be more overt about it. I’d go around in a wheelchair doing wheelies or talking about how I could be playing for the Great Britain team. My friends at school thought I was the cool one.

BLOOM ~ winter ~ 2014 ~ 9

BLOOM: How did growing up with disabilities in your family affect you?

Ade Adepitan: Our disabilities made me so much more open minded. I also grew up a lot quicker than my peers.

Most of my friends would freely admit I was the only disabled person they knew and none of them knew anyone with an intellectual disability.

It was no longer a shock for me to meet someone with a disability. I was able from a young age to look beyond people’s disabilities and see them as people. There’s only so long you can dwell on why this person has such and such and after that it’s more about the person’s personality.

My sister may have an intellectual disability but she can be stubborn, she can be really intelligent, she can be really humorous and she can be quite annoying as well. People with disabilities have all the same traits as anyone else and that’s what I see now more than I see the disability.

It’s the weirdest and most horrible and divisive part of the human psyche— our want to categorize everything.

BLOOM: What do you think about prenatal testing?

Ade Adepitan: I’ve wondered if my parents knew that I was going to be disabled, or my sister, would they have still had us, and I don’t know. I think it comes down to individual choice and I can’t make people’s decisions for them. I can say ‘Look, I’m disabled and my sister has an intellectual disability and our lives have been just as rich as any able-bodied person’s.’ Okay, there are complications, but there are complications in all walks of life. I don’t think life is going to be as hard as [parents] think it will be with a child with a disability.

And you’ll be enriched in different ways.

BLOOM: What’s needed to make the world more accepting for people with intellectual disabilities?

BLOOM: Even within the disability community some differences seem to be valued more than others.

Ade Adepitan: Everything starts from what you learn as a youngster. All kids going to nursery or kindergarten should be mixing with kids with intellectual and physical disabilities.

Ade Adepitan: One of the flaws of the human race is that we have to put everything in groups. It’s easier for us to label people and use a hierarchy in order to understand the world. I’m not like that and I think that’s because of my upbringing.

We need to mix all these different groups together from the age of three, four, five and stop separation. Separation is what creates intolerance.

A lot of people think of intellectual disability as the lowest in the hierarchy of disabilities, but even within physical disability there’s a hierarchy.

I think people who are deaf and blind probably don’t categorize themselves in the same position as someone who has a mobility impairment.

And even within mobility impairments, at the top of the tree are the amputees and at the bottom are the quadriplegics.

Ade Adepitan: I’m involved in trying to get disability and the rights of people with disabilities included in the UN’s Millennium goals. They drew up a load of goals to do with improving sanitation and uplifting women in developing countries, but of eight goals they never made mention of disability.

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BLOOM: What work are you doing with the United Nations?

Photo by Channel 4

aroundtheworld

BLOOM: Tell us about the film you did on polio in Nigeria.

Ade Adepitan: I’ve been trying for years to do something about myself having polio and being born in Nigeria, but TV is a ruthless world and the execs didn’t think it was something that would be high on the ratings.

But after the Paralympics was such a success, Channel 4 put me in touch with some really cool directors who’d been doing research on the problems with Nigeria’s vaccine campaign.

Vaccinators had been shot dead by Islamist militants who claimed the vaccines were part of a Western ploy to sterilize children and wipe out the Muslim population. So the two things came together and it was magic (see Ade in Nigeria above trying out a local way of getting around for people with disabilities: skateboards).

BLOOM: What was the purpose of the film?

Ade Adepitan: We went back to find out a little about my backstory and why I got polio, and the story and statistics of polio there now.

There are only three countries where polio is still prevalent and Nigeria is one of them.

Nigeria is the only country in Africa where polio is endemic. Why? It’s a wealthy country in comparison to other African countries and it’s relatively stable, there’s no war going on there.

BLOOM: What are the barriers?

Ade Adepitan: Polio is prevalent predominately in the north of Nigeria where there’s a serious lack of education. A lot of people don’t go to school because of poverty and are illiterate. So they don’t have the knowledge to understand about polio.

There are also people who are very nomadic in the northern parts. So it’s difficult for vaccinators to locate them. And polio is very contagious.

One person with polio has the potential to infect 100 people yet 95 per cent of people who carry the virus will show no symptoms.

The sanitation system in Nigeria is terrible and that’s the way polio is transmitted: through fecal matter.

In 2003 there was a vicious rumour spread that polio was a Western ploy to control the Nigerian population, especially the Muslim population based in the north. There was an uproar in northern Nigeria and the government suspended the polio campaign for nearly a year. The polio numbers shot back up and Nigeria has never recovered.

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aroundtheworld

On our trip we met some people who refused to have their children vaccinated and many still believe that the vaccine is part of what they call the white witches—part of the white evil medicine to depopulate northern Nigeria.

There were some heartbreaking stories.

We met one guy whose 18-month-old son wasn’t vaccinated and has polio. He can’t walk and crawls on all fours. In the part of Nigeria where he lives, you don’t want to look on the ground because it’s full of sewage and the stench is disgusting. This boy has to crawl through that stuff.

BLOOM: What would your life have been like if you’d stayed?

Ade Adepitan: There’s no comparison of how my life would have been. The opportunities that I’ve had since I’ve been in the U.K.—I work on TV, I’m a known face in the country, I’ve represented my country as an athlete, I’m respected despite having this disability, people talk about me rather than my disability and I’ve been able to be educated—all of these things would have been greatly reduced.

My sister who stayed in Nigeria really struggled at school. They didn’t know what Down syndrome was and for the first few years she was put in a mainstream school and the teachers treated her really badly because they didn’t understand her disability.

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BLOOM: Tell me about Omoyile’s life now.

Ade Adepitan: She lives with my mom and she gets to do loads of things. She’s really into drama and going to drama classes. She’s into art. She’s on a work training course to try to find a placement. She’s worked before but because of the economic problems in the U.K she was let off. But now she’s doing some training and maybe will find a placement in a canteen or in a super store.

BLOOM: What advice would you give parents of kids with disabilities?

Ade Adepitan: You have to be open-minded, open to everything and surprise yourself.

There are lots of things that my family—me and my mom and dad and sister—have achieved that we thought we’d never achieve.

When you start off trying to tackle these tasks, you get into thinking this might not work, but that’s not a reason not to try it.

Don’t be afraid to make mistakes. Mistakes are part and parcel of life and you learn a lot from those mistakes. You should go out there and surprise yourself.

There are things you may think your children can’t do and they might not be able to do it now, but with some work they probably can.

In 20 years we’ll be looking at people with all kinds of disabilities and being surprised and amazed at what they can do and looking back and thinking how primitive we were to put so many boundaries on our kids.

parenttalk

‘Nothing Photos by Andie Hine

is permanent’

When Sandra Stein’s healthy toddler suffered a severe brain infection, she had to give up any expectations of what to expect next. ‘Some days he smiles,’ she writes. ‘Most days he does not. Some days he moves his legs. Most days he does not.’

When my son was two years old, he played like most toddlers I’ve known. He built block towers and yelled in frustration when they toppled down. He climbed every structure at our neighborhood park and protested when it was time to leave. He complained when a beloved toy broke or the batteries ran dry.

I decided, half-jokingly, that I would try to teach him the Buddhist law of impermanence— the notion central to Buddhist teaching that things change and nothing lasts forever.

By Sandra Joy Stein

BLOOM ~ winter ~ 2014 ~ 13

parenttalk

I suggested to my husband and other parents, with a strong dash of humour, that this law would ease our children’s sense of loss or disappointment, which would only intensify as their lives progressed. I do not claim to be a master of Buddhist thought, but it did occur to me that if our children were to know and accept the law of impermanence at a young age, it would increase their chances of living happy lives.

‘

We lived moment to moment [in the ICU], never knowing what the day would bring, while bearing witness to 11 families as they lost their children.’

When an autoimmune encephalitis rendered my formerly healthy son severely neurologically compromised at two-and-a-half years old, my lighthearted lessons to him became my son’s own profound teachings to me.

In two weeks he went from crafting percussion instruments out of anything he could get his hands on to thrashing around in a hospital crib. He went from exclaiming excitedly “Mommy! An upside-down M is a W!” to being non-verbal. He went from riding a twowheeler with training wheels for miles at a time to being non-ambulatory and tube-fed.

We lived in hospitals for 15 months before being discharged to home with near-roundthe-clock nursing care, a wheelchair, a supine stander, a bath chair, and a rigorous home-based therapy schedule. Our former lives a distant memory, it was clear: things had changed.

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The type of encephalitis my son has has a good prognosis, with early studies showing the vast majority of those affected making substantial recoveries, some even after several years.

Although my son has not yet “turned it around” or “woken up from this,” as his neurologists are wont to say, several of his symptoms (dyskinesias, hypertonia, spasticity) come and go.

As soon as we think we’ve adequately addressed some type of pain, discomfort, or spasm, we are on to some new challenge in the bodily consequences of a brain in atypical flux.

Many folks with this disease report sudden status changes, moving from perfectly healthy to critically ill and then non-ambulatory to walking and non-verbal to talking. We do not know what to expect every single day. We have to make decisions for the moment we’re in with some regard for the consequences of those decisions on an unpredictable future.

I have never had such an abject lesson in the law of impermanence than from my son on his journey through this illness. Everything I ever worked for, saved for, and hoped for changed in a way that laid plain the centrality of the notion that nothing is permanent. I realized that despite my attempts at understanding this concept, and even thoughts of teaching them to my then-healthy son, I had no real grasp of the true nature of impermanence until now.

Parts of the teachings were brutal, like living for months in the ICU where, due to severe dysautonomia—a potentially life-threatening symptom of this disease—my son’s heart and breathing would randomly and unexpectedly stop, then resume, often requiring emergency resuscitation. We lived moment to moment [in the ICU], never knowing what the day would bring, while bearing witness to 11 families as they lost their children to freak accidents, random (and not-so-random) violence and disease.

Nothing, nothing is permanent.

For a time I found it impossibly hard to be so uncertain of what would happen next.

Would he live to see the next day? Would he ever get better? I struggled with the nonlinearity of his symptoms and agonized over my sense that he had hit the lowest point of his course in this disease (which we were told by several doctors) only to realize that his condition would in fact get worse.

As he grew more stable I began to worry about the next phases of his illness, wondered about the effectiveness of rehab and feared the potential for relapse, even prior to approaching any semblance of recovery. I wanted to know when

I could reasonably expect improvement and whether my son would walk again, talk again, eat again, laugh again, smile again and play again.

I wanted to prepare myself for all of the possible outcomes as if one of them would be the permanent, static conclusion to this total upheaval of our lives. All the possibilities and my inability to prepare for them were a kind of emotional torture. A wise friend suggested that I not try to solve any problems that I didn’t actually yet have. It was time to embrace the notion of impermanence as a mechanism to preserve what might still have remained of my sanity.

It is not an easy lesson to fully absorb and it scrapes against both practical strategies for getting through the day and all the lessons on futuristic thinking taught to me by my parents, professors and profession—to plan, save, schedule, anticipate, predict. When asked if I can attend an event, make an appointment, or get together with a friend, I go through the motions of planning with the knowledge that I do not know whether I will be able to show up. In reality, nobody knows whether they will be able to show up to anything in the future.

BLOOM ~ winter ~ 2014 ~ 15

parenttalk

‘

At our most difficult moments, I find great comfort in telling both of us, “It won’t always be like this.” What it will be like, I cannot tell.’

Because of my son’s teachings, I just happen to know profoundly that I don’t know.

I now approach impermanence as a discipline, like one might approach meditation or yoga (neither at which I am particularly skilled). If I can adjust my orientation to the present moment, take stock of it, and interrupt any tendencies to escape it, I am able to accept the uncertainties inherent in all of our lives, uncertainties that most folks (myself included) prefer to ignore.

Without permanence there is no “outcome” of my son’s disease, no before and after, just my son in the moment he is, on his extraordinarily difficult journey. His symptoms change so readily—sometimes his head is oriented to the right, his gaze fixed, his teeth grinding loudly and sometimes his head is in midline, his eyes focused and his jaw at ease. Some days he smiles, most days he does not. Some days he moves his legs. Most days he does not.

While so much has changed and continues to change about my son from a physical standpoint, his essence feels totally intact. He was always compassionate, always a deep thinker, always asking me what I was thankful for, all day every day from what I thought to be a surprisingly young age. And when I answered “I’m thankful for you!” he would respond “Awww, that’s so sweet.” He is still that being, locked inside a body he cannot at the moment control.

He has changed the way I interact with everyone and given me a greater ability to see beauty in all forms of humans, particularly those who we think of as disfigured or deformed. I walk through the world differently because of him—I am aware of much more and afraid of much less. I stare down my fear every day and walk that fine line of accepting his current condition and working to maximize his potential for what might be, all while striving to stay firm in the here and now.

Despite my earlier hubris at thinking I could teach my son a Buddhist principle that I had not fully grasped myself, my son is the one who has taught me how to surrender to the fact of impermanence, and how to live fully in the moment. He has taught me how to hang up the phone with the medical supply company (or any of the other pitifully dysfunctional systems that we rely on to get through the day) and to see that he is, at the moment, stable, breathing and peaceful, or thrashing, screaming and in distress.

At our most difficult moments, I find great comfort in telling both of us, “It won’t always be like this.” What it will be like, I cannot tell.

Sandra Joy Stein is an education and leadership consultant, writer and poet who lives in New York City.

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siblingissues

Disability puts sibs at risk for mental-health issues, study says A recent Pediatrics study found siblings of children with disabilities were almost three times more likely to have parent-reported emotional and behavioural problems than siblings of typically developing children.

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The study at the University of Arkansas for Medical Sciences (UAMS) drew on data from a national, large-scale American survey. Researchers identified two groups of siblings aged five to 17 years: one had 245 siblings who lived with a child with a disability and the other had 6,564 siblings who lived with children without disabilities.

Parents answered questions about siblings on the Columbia Impairment Scale, which looks at a child’s function in 13 areas, including relationships with family and friends; emotional health; school work; and use of leisure time. The surveys were done twice to look at changes over a 12-month period.

BLOOM interviewed Dr. Anthony Goudie, assistant professor in the Department of Pediatrics at UAMS and principal investigator.

BLOOM: How did you get interested in studying siblings?

Anthony Goudie: I came from Cincinnati Children’s Hospital and we worked on a grant from the Ohio Developmental Disabilities Council that looked at the effects of families caring for children with disabilities.

Part of the first round was doing some focus groups of parents of kids with disabilities. We wanted to understand their daily lives, the services they obtained and the ones they lacked.

Through the focus groups we identified a group we weren’t focusing a lot of attention on and those were the other children in the family.

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There were some very poignant and emotional stories about how siblings were reticent to ask their friends to come over to play because the child with a disability might be disruptive, or their friends weren’t familiar with severe mental disabilities. There was a certain amount of embarrassment that the child was going to act up and while the sibling understood, his friends wouldn’t.

BLOOM: Your study found siblings of kids with disabilities to be almost three times as likely to have significant functional impairment. What does significant functional impairment look like?

Anthony Goudie: These are kids who have problems getting along with other members of the family, problems making and keeping friends, and behaviour issues. They tend to have a lot of anxiety and emotional problems, in terms of feeling unhappy, afraid or nervous of certain situations. They don’t tend to be able to feel that they can express their anxieties or fears, so they internalize them. They also have problems focusing attention at school.

BLOOM: How could these problems affect a child in the future?

Anthony Goudie: A clinical association has been made between functional impairment and higher rates of depression and mental illness.

BLOOM: How did your study work?

Anthony Goudie: We used data from the Medical Expenditure Panel Survey, which is essentially five interviews equally spaced over a two-year period. In two of those interviews, spaced about 12 months apart, parents answered questions on the Columbia Impairment Scale.

First we wanted to see if there was a difference between the group of children with siblings with disabilities and the group of children with typical siblings.

siblingissues

Overall, we found kids who live with children with disabilities have significantly higher functional impairment than kids who live with children who are typically developing. They’re almost three times as likely to have these problems.

If you’re a primary-care physician you need to know that growing up with a child with a disability is a risk factor for mental-health issues. If you’re seeing a child with a disability you need to ask how the other children in the family are doing. Mental-health screening and counselling and sibling support groups have been shown to be helpful. Our paper was geared to the health system. We want the health system, insurance providers and policy makers to develop family-based solutions that consider all members of the family.

BLOOM: What changes did you see between the two groups over time?

Anthony Goudie: The group who live with siblings with disabilities and the group who live with typical siblings both increase in functional impairment scores on average.

The scores of kids who were significantly functionally impaired at first measure who live with a sibling with disability do come down at the second measure. But not nearly as much as kids who scored with functional impairment at first measure who have typical siblings.

BLOOM: How do you explain the difference?

Anthony Goudie: I attribute the difference to potential counselling. If you’re a parent of children without disability and you notice one child starting to act out at school or having social interaction problems, you might be more proactive in getting that child some counselling, or identifying the problems on a well visit to your doctor.

But if you have a child with a disability, you

might not have time to actively seek some help for the sibling because your time is focused on the child with disability. And the problems of the other child might pale in comparison to those of your child with disability.

There’s also a socioeconomic aspect. The families of children with disabilities in our study were poorer. And that’s not because poor families have higher rates of children with disabilities. That’s because parents have to leave the workforce to care for their child.

So the families of the children without disabilities may have the insurance status and socioeconomic means to go out and get counselling or proper primary health care for their kids while the other group of families doesn’t.

‘

If you’re a primary-care physician you need to know that growing up with a child with a disability is a risk factor for mental-health issues.’

BLOOM: You suggest that increased functional impairment in siblings of kids with disabilities is because parents have less time to spend on their typically developing kids.

Anthony Goudie: Yes, we make that association and it’s based on what is in the literature and backed up by what parents tell us anecdotally. [Parents] do have less time and they get less sleep and it ends up meaning less time to spend with the typically developing children. These caregivers are certainly not neglecting their other kids. They’re just as concerned about all of their kids. It’s the reality of the extra demands they face.

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siblingissues

BLOOM: Do these findings apply to families of kids with all kinds of disabilities?

Anthony Goudie: A child was defined as having a disability in our group if parents responded ‘yes’ to a question about the child’s functional limitation based on a medical condition. The survey doesn’t ask what the condition is. However, data from the 20052006 National Survey of Children with Special Needs asks questions about a child’s functional limitation and their specific condition.

In this survey, most of the children identified with functional limitation were complex kids.

Forty per cent had difficulty breathing. Onethird had [intellectual disability] and 28 per cent had problems swallowing and digesting food. These kids have multiple issues. I think kids with less significant disabilities take a lot less time and effort to parent.

BLOOM: What message should parents of kids with disabilities take from this study?

Anthony Goudie: I think they need to be a little more proactive in looking at the triggers of functional impairment. All kids have behaviour problems, but if your child has behaviour problems and they’re feeling unhappy and sad and having trouble with school work, I’d recommend you seek some counselling or a medical opinion.

BLOOM: I think this study creates pressure on parents who already feel that they’re not doing enough for their child with disability.

Now they have to worry that they’re not doing enough for their other kids. And how easy is it to get mental-health services for a child with a therapist who understands the unique experiences of these families?

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Anthony Goudie: I think in the U.S. it’s extremely difficult to find that kind of help.

Just getting primary health care is an issue for a lot of families so specialized mentalhealth care is even a greater issue. There are some good sibling support programs. Seattle Children’s Hospital has a really good one. We’re in the conceptual stages of trying to get one off the ground here. And we need interventions that don’t exclude families who are poor.

BLOOM: There are other studies that have shown positive outcomes of growing up with a brother or sister with a disability.

What do you make of those?

Anthony Goudie: There are exceptional families and parents who are resilient and take a positive outlook that this is going to bond them even more and put a lot more context into their household. But I’m not sure that the other studies included families who are socioeconomically challenged. I’m not sure that they had the right demographic.

People with economic means are going to have ways to overcome some of the challenges and get the right amount of counselling and support.

Most of the other studies I’ve seen have 20 to 30 siblings. Our study with 245 siblings of children with disabilities is the largest I’ve come across.

Editor’s note: There are excellent resources at the Sibling Support Project (www.siblingsupport. org). Holland Bloorview hosts a sibling panel each year where brothers and sisters talk about their experiences. Other resources can be found by calling our Warmline at 416424-3888 or toll-free at 1-877-463- 0365.

Photos by William Suarez

carenotes

How can you bring ng i h t o o s s i th oasis home?

In Holland Bloorview’s Snoezelen pool, children dip strings of twinkling fibre-optic lights in the warm water, while classical music plays in the background and vibrates through an underwater speaker, and images of stars spin like a kaleidoscope on the wall.

Snoezelen (which combines Dutch words meaning “to sniff out” and “doze”) is a soothing environment aimed at awakening the senses.

“The main goal is to promote deep relaxation,” says Lorraine Thomas, Snoezelen coordinator at Holland Bloorview. “Children with special needs often have very regimented days. They may go to therapy and be expected to do things that they’re not good at. But in the Snoezelen environment, they’re not being judged on their abilities.

Snoezelen is failure-free. They’re just allowed to be, and that’s really important for a kid.”

In addition to its pool, Holland Bloorview has two Snoezelen rooms (see photo above) and a cart that brings the magical, sensory world to children’s hospital beds.

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carenotes

Try this recipe for creating your own sensory corner or room at home

1

Choose a low-traffic spot in the house that’s quiet with few visual distractions. If you don’t have a room to set aside, use a space divider or black or white shower curtain to create a corner. The corner needs to be dark to maximize the effects of the lights.

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4

String Christmas tree lights around the room or corner, or use light-projecting objects like bubble lamps, black fluorescent lights and bendable light tubes. Even a plant can hold a string of 35 small, white holiday lights.

Use coloured light bulbs to create a unique effect. A flashlight can be pointed at a piece of crumpled cooking foil to break up the light beam in interesting patterns.

Or put tissue paper over the end of the flashlight to change the light’s colours.

Cover the floor with something soft and comfortable like exercise mats, carpet, pillows, bean bags or mattresses. You can make these vibrate by putting a back massager cushion underneath. Or you can use a comfy chair or sofa. You’ll need a small table to hold sensory items.

5 6 7

Use fluorescent paint to paint stars on the ceiling or on a hung sheet.

Make and hang colourful mobiles and melodic wind chimes or rain sticks.

To appeal to smell, buy an aromatherapy fan or plug-in or use scented hand lotion or aromatherapy oil for massage. Flavoured drinks or foods can help awaken taste.

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Play relaxing music (dolphin music, rainforest sounds, classical music) or use a sound therapy machine that creates soft sounds like a waterfall, rain and canoeing on a river.

9

Consider buying a bubble tube (available at some Wal-Mart, Canadian Tire and Target stores) or even a fish aquarium with colourful fish.

10

Purchase small cause-and-effect toys (e.g. those that light up, vibrate, make noise or have a tactile feel) and sensory items like koosh balls and balloons filled with rice.

Where to find sensory items The Body Shop: www.thebodyshop.ca Conair: www.conaircanada.ca Discovery Toys: www.discoverytoys.net Experia: www.experia-innovations.co.uk Flaghouse: www.flaghouse.ca Homedics: www.homedics.ca Ikea: www.ikea.com/ca/en Mastermind Toys: www.mastermindtoys.com Shoppers Home Health Care (carries vibrating mattress pads and seats) www.shoppershomehealthcare.ca/ english/home_health_care 22 ~ BLOOM ~ winter ~ 2014

rolemodel

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Two weeks before the end of her Grade 10 school year, Irene Tran—a bubbly teenager who excelled academically and was an accomplished pianist— was rushed to hospital with a ruptured brain aneurysm.

When she came to Holland Bloorview for rehab, Irene was paralyzed on the right side, struggled to speak and had lost the ability to read, write and do math.

Irene’s dream of going to university was derailed. She couldn’t return to the academic stream at her school. Instead of graduating from high school in two more years, she had to put in five more years to earn her diploma.

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Everything changed, Irene says, but it wasn’t all bad. Seven years later Irene’s at university in early childhood studies and works parttime at one of Holland Bloorview’s integrated nursery schools (see photo above).

BLOOM: What was it like when you returned to high school after your brain injury?

Irene Tran: It was extremely frustrating.

In the past I didn’t have to work hard to get ‘As.’ Now, not only was I not where my peers were, but I’d gone backwards and was doing basic math and English skills. My friends were planning for postsecondary, and I was trying to re-learn what I’d lost.

Anything language-based that had been automatic before—like reading, writing, expressing my thoughts or even labelling an object—was really effortful. I could put 200 per cent into something and still not get the result I was once capable of with a fraction of the effort.

Photos by William Suarez

rolemodel

BLOOM: What classes did you take?

Irene Tran: I was in special programs with intensive support from special-ed teachers and assistants and I was taking basic literacy, numeracy and life skills. I felt really isolated because I wasn’t with my friends anymore.

Many were heading toward a different path than I was. It was hard for them to see how different things were for me. They were unsure of how to engage with me or scared to talk about what happened to me.

BLOOM: How did you stick with school when it became so difficult?

Irene Tran: Initially my goal was to regain as much function as possible. I wanted to prove people wrong—that I could go back to an academic program.

And I did eventually. I definitely had a lot of anxiety, especially with school.

I sought support from a social worker and family therapist at Holland Bloorview. It was helpful to have people who have a lot of knowledge about what people go through after brain injury, and who are outside my immediate friends and family, who can be objective. I learned breathing techniques and other coping strategies.

I also had support from a community resource teacher and occupational therapist who kept me on track with my high-school courses, helped me transition to post-secondary education and connected me with disability services.

But there were times when I was extremely frustrated and wondered ‘Why am I pushing myself so hard? Where am I going to get?’ It’s only been in the last year and a half that I’m more accepting of how things are. I still have hopes and dreams, but I’m really happy where I am.

‘

Before the injury I had a rigid way of thinking about success. I never would have gone into this field because I didn’t have exposure to people with disabilities.’

BLOOM: How did your brain injury lead you down a completely different career path?

Irene Tran: Before the injury I had a rigid way of thinking about success: I’m going to university and I’m going to grad school by the time I turn 22.

After my rehab I began volunteering at Holland Bloorview in the school and in recreation therapy. I found I really like working with children and with kids with special needs. Then job opportunities came up because of my volunteer experience.

I worked at an after-school children’s program and as an integration worker with children with special needs in mainstream camps. I realized this was something I loved and was passionate about. I never would have gone into this field prior to my injury because I didn’t have exposure to people with disabilities.

BLOOM: Was there anything positive about your brain injury?

Irene Tran: It opened up a whole bunch of opportunities. I’ve made life-long friends through this journey, strengthened relationships, been inspired by the people I’ve met and have a strong sense of purpose. I’ve gained so much life experience I wouldn’t have otherwise.

I’ve had amazing opportunities to give back to Holland Bloorview through volunteering, mentoring and now working. I’m a lot more resilient. I’m able to cope with things that I thought I’d never be able to cope with, and still look for the positive things in life.

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rolemodel

‘

There were a lot of people who believed in me when I had a difficult journey ahead of me, so I’m committed to doing the same for the children I work with.’

BLOOM: How are you still affected by your brain injury?

Irene Tran: Language is still a challenge.

Other people don’t always notice it, but I do. Processing takes longer, and so does reading and absorbing new information.

Cognitively I can still get exhausted. I haven’t needed accommodations at work, but in an academic setting I need more time.

It’s hard having an invisible disability because if you don’t say anything, people won’t know why something is difficult for you. I was comfortable in a school setting telling my teachers ‘these are my challenges and this is how you can help me.’ But I was hesitant and self-conscious about asking for help when I was first back in the community.

It’s important to know yourself and know what’s helpful for you so you can share that with other people. The more comfortable you are, the more comfortable others will be.

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BLOOM: What advice would you give other youth earlier on in rehab?

Irene Tran: You have to find a balance between still being hopeful and having dreams, but at the same time being flexible and open to other options. Your plans might change and you might have to go about doing things differently. I never would have considered early childhood education before my injury.

You have to look at your strengths too, and what you’re interested in, and sometimes it’s good to broaden your perspective.

BLOOM: Tell us about your work in the High Park integrated nursery.

Irene Tran: I’m an early childhood educator working with children aged two to five. Half of the children have disabilities and half come from the community. We create a play-based learning environment for the children based on their interests and developmental needs. We work with a team of interdisciplinary professionals.

My positive experience at Holland Bloorview influenced why I’m working at Bloorview now.

I always feel that the kids have potential and I want to help them reach it. There were a lot of people who believed in me when I had a difficult journey ahead of me, so I’m committed to doing the same for the children I work with.

We try very hard to work with parents as partners. Supporting the families and recognizing their strengths and what they bring is so important. I don’t know what I would have done without the support of my family through my rehab process. I feel I have the opportunity to really make a difference. Sometimes I’m still in awe that I’m working at Holland Bloorview. It’s always been a dream of mine.

Irene gives back In 2012, six years after Irene Tran’s aneurysm erupted, Cristina Malana, now 18, had a similar brain bleed. An important part of her recovery has been having Irene Tran as a mentor, she says. The two were hooked up through a Holland Bloorview therapist. “In school I don’t have people to talk to about my brain injury,” Cristina says. “They either don’t understand or they couldn’t care less.

They haven’t experienced the horror of this.

“When I met Irene, we had so much in common.

It helped that she knows what I’m talking about and I know what she’s talking about. Before her injury, Irene was an A-student, just like I was.

I wanted to go into accounting, and then be a chartered accountant, but now I know I can’t do that anymore. I’m not saying I’m giving up, but, like Irene, this is a change of path for me.

Her story was eye-opening. It made me think that maybe I can shift what I want to do for the rest of my life, and love it. Maybe I’ll be okay.”

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trailblazer

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trailblazer

Sitting in judgment A Supreme Court Justice sees society through the eyes of her autistic son

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In October, New Jersey State Supreme Court Justice Helen E. Hoens (left) stepped down, saying she developed the qualities essential in a judge by raising her son Charlie (right), who has severe autism. Here she writes about how living in the ‘margin-world of autism’ prepared her for seven years on the bench.

By Helen E. Hoens The New Jersey Supreme Court is the highest appellate court in the state. Once we decide an issue, there are no more appeals and nobody to overrule us. The game, as they say, is over, except for the rare case when the United States Supreme Court thinks it needs to weigh in on the subject. That happened precisely once during my seven years as a justice.

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Not only does our court have the final say for the folks whose cases we hear, but our decision ends the dispute for everyone else in New Jersey. That’s nearly nine million lives instantly affected by whatever we write. But it’s even bigger than that, because although we’re only one of 50 states in the U.S., history has proven time and again that once we decide an issue, other states follow our lead.

Pretty weighty responsibility, this business of being a justice. For me, it capped off nearly a decade and a half of service as a judge in our trial and appellate courts and nearly as much time earlier in my career practising law.

The story of how I was chosen to serve as a justice, when there were maybe 70,000 lawyers in the state who might have been picked instead, is a pretty interesting tale. But it’s not nearly as interesting as how I managed to pull off that feat while being Charlie’s Mom.

Photos by Charles Schwaneberg

trailblazer

Because that is who I am.

Not Helen Hoens, the noted trial lawyer and mediator. Not Judge Hoens, the respected Superior Court Judge presiding over trials in cases ranging from medical malpractice to land use and defective building construction to contests over guardianships and estates.

Not even Justice Hoens, the acknowledged expert in complex areas of law, prolific writer, popular lecturer and gifted speaker.

In the end, all I am is Charlie’s Mom. Charlie is nearly 30 now, safely ensconced in a group home and working in an adult program.

Today, as a grown-up, he’s happy. He loves his home, and why wouldn’t he? He goes crosscountry skiing, enjoys trips to the beach, sees movies, works out at a gym. Oh, sure, there are household chores and there’s work during the day. Sometimes it’s cleaning the movie theatre or helping to make jewelry that gets sold in real stores; sometimes it’s recycling or shredding.

We see Charlie frequently and that ranges from short visits to his house or taking him out to dinner to extended vacations and cruises (he likes the endless food and side trips on little boats to the beach). As a mother, I am immensely joyful that my son is so happy and it gives me great peace to know that he’s also safe and well-cared for.

Charlie is completely non-verbal and has only rudimentary communication skills. But he’s a pretty cool guy, or so they tell me, and he has a pretty cool life.

It wasn’t always that way. For all of us, his dad included, it’s been a long, tough journey, full of dark days and sleepless nights, punctuated with bouts of aggression. That’s such a polite word, “aggression.” But the English language doesn’t have a word, at least that I know of, to describe

‘

In the end it was coming to grips with the way the world deals with folks like my son that prepared me for being a Justice of the New Jersey Supreme Court.’

what my son was like for much of his growingup years. Think of a son who grew bigger and stronger than I will ever be, given over to some irresistible demonic urge, laying in wait until Dad was in the shower or mowing the lawn, only then to erupt into a brutal, rage-fuelled, full-on attack on me, and me alone. I lost track of the number of bruises, the handfuls of hair ripped from my scalp, the trips to the hospital ER. How I survived it is a story for another time.

Because although that is part of being Charlie’s Mom, although it was impossible to understand and terrifying to endure, it pales when compared to what it was like trying to deal with the way that other people in the world reacted to autism. But in the end it was coming to grips with the way the world deals with folks like my son that prepared me for being a Justice of the New Jersey Supreme Court.

I did not grow up knowing much about autism, but I certainly grew up knowing that there were plenty of other folks who weren’t as lucky as I was. Folks without jobs, folks without homes, folks with physical challenges, folks with mental illness. They were everywhere, if you took the time to look, and all of them were people who deserved to be treated with dignity and respect, to be helped if you could, by reaching out, helping, giving and sharing.

That’s why, as a teenager, I did hundreds, maybe thousands, of hours of volunteer work. I even won a prize for writing an essay about looking beyond somebody’s physical disabilities to see the person inside.

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That life ill prepared me for being the mother of a son who was profoundly autistic. Never mind the scarcity of programs and lack of educational opportunities, never mind the fact that autism was little known or little diagnosed back then; the hardest part for me was that I suddenly found myself in a world far different from the one in which I grew up.

The reality was that I had become the mother of one of those “others” who were different.

Worse, I found that there weren’t a whole lot of folks who were reaching out, helping, giving and sharing. And being treated with dignity and respect? Not at all. Instead, I discovered that I lived in a society in which, when people saw my son and me at all, they merely glanced before turning away and hurrying by, as if looking at us too long or too directly might infect them with our misfortune. I lived in a world that consigned both me and my son to its margins.

But it is my life there that made me who I am.

And just who am I? When I joined, and more recently when I left, the New Jersey Supreme Court, our newspapers were filled with stories about a long list of qualities that others have said suited me so perfectly for my work on the court, qualities like patience, compassion,

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strength and courage. But what they didn’t say is that each of those qualities came from living in the margins with my son.

Patience? I learned that sitting with Charlie, endlessly repeating the steps, one at a time, involved in brushing his teeth, or combing his hair, or putting on his underpants front-forward (he never got that one). While other kids master those skills and more almost without being taught, I learned to stay patient as my son crept snail-like toward the ever-elusive goal of being able to do the simplest tasks of daily living.

Compassion? I learned that while wrestling my son to the ground in the grocery store when he flew into a rage because he cannot wait in line, or while tackling him as he tried to grab somebody else’s lunch because ours didn’t arrive quickly enough to suit him. For somebody like me who always thought you had to be a pretty lousy parent to have a kid who shrieked or lunged in public, living with my son taught me to see others with compassionate eyes.

Photo The Star-Ledger, Newark NJ

trailblazer

Strength? I learned that when another mother phoned in the middle of the night begging me to use my lawyer skills to get her autistic teenager out of the psychiatric ward and into a non-existent placement in a newly opened residential program, because she knew that in this margin-world of autism, I was pretty much the only one who could. So I summoned up strength and did it. For free.

when I took the oath of office and joined New Jersey’s highest court, reaching the stratosphere of my chosen profession, I grabbed the chance and publicly pointed to my son as the person who taught me all the things that others said made me a perfect choice. That took all the courage I had, but they say it opened eyes and changed things, at least for a time, for people with autism and their families in New Jersey.

Courage? I learned that when I saw that the world will always prefer to avoid looking at people who are different, who are needy, who make regular folks uncomfortable. I learned that when I realized that as long as we are willing to remain silent, we will stay there in the margins.

Because, truth be told, I have never left that life in the margins. Maybe that’s why, seven years ago

Life with my son, life in society’s margins, has never been easy. But it is this life with him that made me who I am and paved the way for what I have become.

In the end, it is all that I am.

Charlie’s Mom.

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Software helps kids with autism track anxiety Most children can recall a time when they were so nervous their heart pounded.

But children with autism may have more difficulty recognizing the symptoms of anxiety— or communicating how they feel to others.

“Research shows that 40 per cent of children with autism have elevated levels of anxiety or at least one anxiety disorder, but they may have difficulty identifying the symptoms,” says Azadeh Kushki (above), a scientist in the Bloorview Research Institute. Those include a racing heart, shortness of breath, feelings of dread and hyper-vigilance.

So Kushki is working on a software that will alert kids to changes in their heart rate—one of the most consistent markers of anxiety.

The anxiety meter is a tiny microprocessor worn on an arm band that connects to sensors on the chest. Using a smart phone or tablet, children track changes in their heart rate

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based on the movement of a white circle.

When the circle sits in the green range, it signifies relaxation. As it moves into the red area, it identifies arousal and signals the need for the child to apply a calming strategy.

Kushki plans to test the device in a randomized trial in Holland Bloorview’s Facing Your Fears program for youth with autism this year. This cognitive behavioural program has been adapted with increased emphasis on visual information.

Children practise identifying emotions, rating them, and using strategies to manage them.

“We know anxiety has a negative impact on physical health and mental health,” Kushki says.

“It can increase the risk of other psychiatric disorders like depression or substance abuse and cause difficulties in school and social isolation.”

Kushki says the device may eventually be incorporated into a “smart fabric” shirt and, in addition to tracking a child’s anxiety, guide the child on practical calming strategies.

researchhits

Science

roundup Medical websites for kids lacking A Holland Bloorview study found that few websites about children’s conditions like autism, cancer and Down syndrome are aimed at child readers. Of 100 childfocused sites, most scored “fair” in terms of reliability and quality of information. The study also suggests many kids don’t question the credibility of what they read online.

Researchers plan to develop a kid-friendly assessment tool.

Study flags pain in kids with cerebral palsy One in four children with cerebral palsy has moderate to severe pain that limits activities, according to a Holland Bloorview study published in Pediatrics. Hip pain and tight muscles were the most frequent causes of pain reported by caregivers of 252 youth. Because these types of pain can be treated, the researchers say every child with cerebral palsy must be asked about pain levels.

Many nonverbal children with autism go on to speak

Scientists see signs of autism at two months Signs of autism are apparent as early as two months after birth, according to a study published in the journal Nature. Researchers found the ability to make eye contact waned between two and six months of age in children later diagnosed with autism, whereas it steadily increased in typically developing children. The hope is that earlier identification will lead to better treatment.

Surgery to ease tight muscles has long-term benefits A surgery to treat spasticity in some children with cerebral palsy has benefits that last into early adulthood, according to a study published in the Journal of Neurosurgery: Pediatrics. “This study has allowed us to confirm that the change in gait pattern induced by the [dorsal rhizotomy] is long lasting and ‘protects’ children from the natural history of the disease,” said Dr. Jean-Pierre Farmer, the senior author.

A Pediatrics study on 500 youth with autism who were diagnosed with severe language delays at age four finds that nearly half go on to become fluent speakers and over two-thirds eventually use simple phrases.

The researchers found that higher IQ and lower social impairment increased the likelihood of developing speech, but the level of a child’s repetitive behaviours did not.

Tool kit explains epilepsy and mood disorders About 30 per cent of children with seizures have mental-health problems, including depression, according to a new booklet and CD from Case Western Reserve University and Cleveland Clinic.

The guide gives information on medication for epilepsy and mood disorders, as well as teaching parents how to work with schools to prevent bullying.

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Thank you to the Coriat family!

Parenting a child with a disability is a unique journey that David and Lynn Coriat, with daughter Jessica, know firsthand.

That’s why the Coriat family has been a significant donor of the BLOOM program.

“Parents of children with disabilities face challenges on a daily basis,” David says. “What BLOOM does is offer a forum for learning and sharing and the comfort that ‘I’m not alone’.”

Whether it’s BLOOM’s award-winning magazine, the BLOOM blog uniting parents and clinicians in 162 countries, or the speaker series that brings leading thinkers on childhood disability to parents and professionals, the Coriat family’s vision underlies everything we do.

Thank you to the Coriats!

Please join the Coriat family in supporting this one-of-a-kind resource. To make a donation, please call the Foundation office at 416-424-3809.

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