Monday, March 30, 2015

A twin's bond sparks brilliance

By Louise Kinross

Judith Scott was an acclaimed sculptor whose abstract pieces—combining fibre and found objects like an umbrella or bicycle wheel—show in galleries and museums around the world.

Yet for more than 40 years, her talent lay dormant.

Judith, who died 10 years ago, had Down syndrome, was deaf and lived most of her life in an institution. Ironically she was deemed too “retarded” to draw with crayons while there. Judith’s life changed at age 42 when her twin sister Joyce brought her to San Francisco and became her guardian.

Joyce enrolled Judith in Creative Growth, a community arts centre for people with disabilities where Judith found her passion.

Joyce’s upcoming book EnTWINed: Secrets From The Silent World of Judith Scott will be published in 2016 by Beacon Press. For seven years the girls lived together in a rural setting on the outskirts of Cincinnati where they were inseparable. At age seven, Judith was sent to an institution three hours away.

BLOOM: What was your early childhood with Judith like?

Joyce Scott: It was idyllic in many ways. We had three older brothers who had their own lives and because we were twins, our parents made this giant sandbox for us where we’d be safe. We played together in this enclosure and had a lot of experiences with nature and the physical world. Behind us were sheep pastures. It was a beautiful place to be children. We slept together and as we got a little older we went around the neighbourhood and played with other children.

BLOOM: What kind of personality did Judith have?

Joyce Scott: She was very loving and outgoing and interested in everything. We didn’t know she was deaf, and what came to be seen as behaviour problems—not coming when someone called her or not being responsive—was related to her deafness. She was very involved in the physical world and now, knowing that she was deaf, I realize the world of tactile sensation and of our touch was a lot more important to her.

BLOOM: How did you communicate?

Joyce Scott: Through signals and touch and she had a few sounds. She understood signals that we developed naturally.

BLOOM: How was her disability explained to you?

Joyce Scott: I don’t remember it being explained. Our parents didn’t even know what Down syndrome was, or have a name for it. I don’t remember realizing she was different for quite a long time, until she started being excluded. I just thought she was Judy.

BLOOM: Why was Judith sent to an institution?

Joyce Scott: She was seen as being more difficult. She’d figured out how to go to the back door where the screen door was locked and get on a chair and climb up and unlock it. She’d wander away and we’d call her and she wouldn’t respond. We had a bad experience when Judy was maybe six where we were next door with a lot of children on the porch and a little one…fell off and her mother had this idea that Judy had pushed her, which was untrue. She said Judy couldn’t come over after that. Our mom carried Judy a lot and she developed back problems. Our parents met with a pastor and a doctor and were told ‘you need to put her in an institution.’ They were told it was bad for the other children for her to live at home.

BLOOM: What was it like when she left?

Joyce Scott: It was absolutely horrendous for her and for me. I woke up and we slept in the same bed and she wasn’t there. I went looking for her and my mother said she was going to a special school where she would learn to talk. At first I thought she was coming back and I thought maybe I could do something to help to bring her back.

BLOOM: Did you visit?

Joyce Scott: It was this horrendous state institution that was something out of Charles Dickens. Terrible. We went regularly for a while, and she came home the first summer, but then our father had a serious heart attack and he died a few years later and that sort of changed everything. Initially she was three hours away but when we were 10 she moved to another place that was four-and-a-half hours away. We would go, but not as frequently. Our mother had a nervous breakdown and was hospitalized. It was very hard on her. She had a lot of guilt and shame about sending her away.

BLOOM: How did Judith influence you?

Joyce Scott: I’ve worked almost my whole career with children with disabilities and families. I was a pediatric nurse and a parent/infant specialist and I did home visiting with parents of babies up to age three who had a disability or were at risk for having a disability. It was an incredibly satisfying and meaningful career for me. So much of what my life has been has been deeply influenced by Judy. When I first finished school at Ohio State I got a job teaching at the state institution where my sister had been sent.

BLOOM: How did you decide to bring Judith to live with you?

Joyce Scott: I moved to California when I was 25 and I would go back to Ohio once a year to see Judy. Later on I was working as a critical care nurse to a family of a baby with medical problems. I became close with the family and went to meditation retreats with the mother. One was a six-day silent retreat. I’ve always been very busy and it was the first time ever that I was quiet. Every day I went deeper inside. Around the fifth day I felt like I came to my heart, my centre. I had this feeling that I was there with Judy and that our core was a central core that we shared. It was like someone turning on the light in a dark room. It became clear to me: ‘What on earth is she doing in an institution 2,000 miles away when she could be with us?’

BLOOM: How did she adapt?

Joyce Scott: It was completely unbelievable. She walked in the door like she’d come home and she went into the kitchen. There were dirty dishes and she looked at me and laughed and washed up the dishes and then she took her wet hands and wiped them down my body and laughed. She was always doing little tricks. She had a bedroom and she came in and took things out of her suitcase and rolled them up and put them in her dresser and put her shoes under the chair. She was completely at home—like she’d been waiting for me to realize she was supposed to be there. I had two daughters at the time and the 10 year old became best friends with Judy. She lived with us for a while and then I found her a ‘board and care’ home nearby and she stayed there. We saw her every day and she’d come spend the weekend with us at our house in the country.

BLOOM: How did you find Creative Growth?

Joyce Scott: I was looking at different programs and really not liking them. Some had cubicles and people would sit in them separating nuts and bolts. They were doing stupid, meaningless activities and it was isolating. I have a good friend who’s a psychologist and she told me about Creative Growth so I called and went to visit and fell in love with the place.

BLOOM: Was this a public or private program?

Joyce Scott: It was provided through the Regional Center in California, an umbrella organization for people with disabilities, so it was paid for. It was a program from nine to three.

BLOOM: When did Judith first start to show potential?

Joyce Scott: For about two years they were introducing her to different materials. She didn’t like drawing, painting or ceramics. She would draw, but not even look at what she was drawing. Eventually they began to think ‘Maybe this isn’t the right place for her.’ One day Judy was sitting at a table where a visiting artist was working with textiles. Judy took some threads and yarns and found some sticks on her own and she wrapped them and made this amazing sculpture that looked a bit like a Native American worship symbol and everyone was astounded. After that they gave her free rein to go to a materials room and pick out what she wanted. Once she started fibre sculpture, you could not get her to stop. Sometimes her fingers would bleed because she worked so many hours and so hard on it.

BLOOM: What did her art mean to her?

Joyce Scott: Without language, she couldn’t communicate her thoughts. Tom, the director of Creative Growth, felt she was finding her own language and finding a way to give voice to her feelings and her deep self. The sculptures are her way of telling her stories and speaking her truth. When people are in the presence of them they often say they get this feeling of such intensity and spirit inside them. They feel they’re pulsing with this life force. The idea that her sculptures were her voice—and her language, her paragraphs and sentences—makes sense to me.

BLOOM: How did she feel about the recognition she got?

Joyce Scott: She was becoming well known in ‘outsider art’ and museum circles and people would come to see her. She would usually be quite gracious and shake their hand and then go back to work. It didn’t mean much to her. When she finished a piece she would rub her hands back and forth, as if to say ‘That’s it, it’s done, good job’ and then she would point to the staff person next to her and point upstairs to indicate that the person could take the piece away. Within five minutes she’d start on something else.

BLOOM: You mentioned she had a first show at Creative Growth?

Joyce Scott: Yes. With that first show they brought her into the room where her pieces were on exhibit. These were pieces she hadn’t seen for months or years. The staff was hiding in the alcove, waiting to see how she would respond. She went to each sculpture and either patted it or blew it a kiss or waved to it. There wasn’t a dry eye. It was like she was greeting her long-lost children.

BLOOM: Her talent could have easily remained hidden.

Joyce Scott: I feel so strongly that people who may look different or appear to be somehow ‘less than’ or who are labelled ‘less than,’ can and often do have great giftedness and great potential. I see Judy as a kind of a model for that. Who would have thought that someone labelled as profoundly retarded and deaf and institutionalized for most of her life had this amazing greatness within her as an artist? What she needed was an opportunity, a place, and respect.

BLOOM: What advice would you give parents on how to best support siblings of kids with disabilities?

Joyce Scott: Often the focus is on the child with disability and the sibling assumes a caretaking role that is more dominant than is healthy for their own self-development. I think it’s important to encourage brothers and sisters (and mothers!) to stay in touch with their own wishes and dreams. I think it’s important for parents to have special time to really honour the other child.

BLOOM: How did Judith die?

Joyce Scott: She was just about to turn 62. We had gone out to dinner and she seemed to have a stomach ache. She hated hospitals and would become hysterical if I took her to one, so I called my ex-husband, who’s a doctor, to ask what he thought. He felt certain it was just a stomach ache. So we went home and I was lying in bed with her and talking to her and she suddenly stopped breathing. In some ways it was such a gift that she died in my arms. But there’s another part of me that thinks maybe if I’d taken her to the hospital, things would have been different. However, when she was born she was given a life expectancy of 13 years and she’d lived a half century beyond that. So I need to focus on being grateful that she was with us as long as she was.

Learn more about the twins at Joyce Scott's website. The photo immediately below is of Judith's exhibit at the Brooklyn Museum earlier this year. Photo by Ruth Fremson, The New York Times/Redux.


Thursday, March 26, 2015

Understanding disability: Black, white or shades of grey?

This painting by Bryan Pearce is part of a 38-image collection called BBC's Your Paintings.

By Louise Kinross

I'm intrigued by how such divergent perspectives on disability can pop up on social media in the same day.

Yesterday a colleague sent me a link to Tom Shakespeare's essay series on BBC Radio 3 called The Genius of Disability

Shakespeare, a British writer and bioethicist, looks at the relationship between creativity and disability through a handful of disabled artists. "The stories I have found show that disability is no bar to success if an individual has talent and drive, and probably a fair share of luck," he says. Shakespeare holds these individuals up as role models for disabled people who have made "great creative contributions despite or because of their illness or impairment."

Something about the title, The Genius of Disability, hit me the wrong way. Isn't disability a hugely vast experience that varies from person to person, and even within a person, over time?  

One of the artists is British painter Bryan Pearce, who was born in 1929 in St. Ives, Cornwall and had an intellectual disability.

In his piece on Pearce, Shakespeare asks: "Does an artist have to be clever?" Then he questions what happens when a person "can't fully reflect on what they're doing... Can you make great art by accident?"

I know nothing about Pearce's disability, but to suggest that he couldn't reflect on what he was doing, or that the paintings you see on this page were created by "accident," is pejorative and patronizing. Perhaps Pearce didn't think about his work in the same way that a person with average intelligence would, but maybe his experience of the world gave him a unique way of seeing and depicting things.

Then I thought about Shakespeare's use of the word "accident," implying that what Pearce produced was somehow random.

And then I couldn't help thinking about how random or "accidental" a large part of talent is, as opposed to being something you develop through hard work, whether you have a disability or not (I know, no one wants to hear this. Everyone wants to believe that they "deserve" their success by working so much harder than others. Everyone wants to pat themselves on the back). A large part of success, I believe, comes from natural ability that a person is gifted with at birth. Yes, they have to develop it, but they start with the tools. Some people, because of the types of disability they have, do not start with the same tools. There isn't any justice in this.

Another artist Shakespeare profiles is Lucy Jones, a British painter with cerebral palsy and dyslexia. He notes that Lucy doesn't want to be "classified as a disabled artist." I thought this was interesting, especially since Shakespeare was suggesting that disability itself fuelled artistic genius.

Growing up, no one could understand why Jones couldn't read, Shakespeare reports. She did well in art but not in her other courses. At some point she got a device that allowed her to express her thoughts by dictating them, as opposed to writing them down, and Shakespeare says: "Now she was getting good grades and feeling like a real person."

Does academic achievement make one a "real person?" Does that mean the painter Pearce, with the intellectual disability, was not a real person?

It seems we often fall into this black and white way of describing disability. Some people, like Shakespeare, who has a form of dwarfism, describe it as an advantage, while others look at it only as a deficit. We want to pin it down, not see it as fluid.

At the same time I was looking at Shakespeare's essays, I saw this piece by a parent of two children with Down syndrome. The mom writes about attending a conference for people with Down syndrome, and how she couldn't help feeling like one of her daughters, who has more significant disability, was excluded. "Everywhere you turned there were presentations about teens and adults with Down syndrome who'd exceeded all expectations," she writes. This included people getting their driver's licenses, going to college and getting married. There were also "videos of dancers, musicians or athletes with Down syndrome." While happy for their success, where did her daughter fit in? Was this an event for high-achievers only, she wondered? Were people now being labelled within the disability community in a hierarchy of value? Was it possible that a person with Down syndrome could attend a conference about and for people with Down syndrome and feel invisible?

The author questions whether we're "trying to sell everyone a better, more desirable version of the child and their disability."

Which brings me to what I thought was a brilliant post by a person with autism and physical disabilities. It's about how "able" folk try to separate her from her disabilities. These are people who constantly tell her things like: "Don't let your disabilities become your identity" and "You're a person with autism, not an autistic person" and "Your disabilities don't define you."

The truth, she says, is that "however much I try to ignore them, my disabilities really do limit me." Why should she have to deny that part of her experience or pretend it doesn't exist? "When people dismiss that, they often end up blaming me for my limitations," she says.

Isn't that what happened to the mom who attended the Down syndrome conference only to feel her child couldn't measure up?

Rather than a source of creative genius, this woman with autism sees her disabilities as physical limitations and a brain that works differently from most. But she's not "giving up, showing low confidence or calling myself weak...After a lifetime of being told my disabilities are weaknesses, I'm being strong without denying them. This is empowerment."

Which brings me to an interesting discussion I participated in yesterday at lunch here at Holland Bloorview. It was about how advocacy skills can be taught to, and evaluated in, students training to work in children's rehab. In discussing advocacy in relation to children with disabilities, the term "self-advocacy" often comes up, and is held to be an ideal. The idea is that we can empower a person with disability, or give them the tools, so that they can speak for themselves. It's similar to our focus on independence as being the preferred state of being for people, with and without disability. 

But there will always be some children with disabilities who are not able to advocate for themselves (because they don't communicate in conventional ways or have multiple disabilities). They need parents and clinicians and others around them to be their voice. In these cases, has a failure occurred? If my child is supposed to be a self-advocate, does it mean that as a parent I've done something wrong, or not done enough of something, if he or she isn't?  

Which brings me back to our tendency to describe disability in black and white ways, to assert that it means this, or it means that, but not both. And to take such strong positions, as if we have to prove to the mainstream world that there is value in a life lived with disability. 

In discussing the painter Pearce, Shakespeare says "people with cognitive disabilities still have value and can do work of value."

He says it, but as an academic, and based on some of his comments, I'm not sure he really believes it, or believes it uniformly for all people with intellectual disabilities, regardless of ability.

Rather than seeking out famous, high-achievers like Pearce, I would rather Shakespeare had taken the time to find stories that show the value of a range of people, including those whose worth could only be shown through their relationships with others, not by what they can "do."  

Tuesday, March 24, 2015

A social media blitz isn't friendship

By Louise Kinross

Yesterday my hubby sent me an e-mail with a link to this story about a 13-year-old Peterborough, Ont. boy with Asperger's. He invited 15 students to his birthday party and not one RSVP'd.

"I read this and started crying," he wrote, thinking about our son. We had a similar situation a few years ago when our son invited two "friends" from school to a celebration that involved going to see The Hunger Games and they didn't show. I remember sitting at our dining room table cutting cake with my other kids when my son asked "where" his friends were and "why" they weren't there. "Something must have come up," I said. We went as a family to the movie.

People who don't have kids with significant disabilities don't have a clue what this is like. It's completely outside their realm of experience. I don't think I would have believed the degree of isolation that can happen, especially in high school and early adulthood, to youth with more significant disabilities, or those that make social relationships challenging.

In 2012, Dr. Anne Snowdon's study of 166 families in three Canadian cities found that more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend. Is that possible? Growing up I spent hours with friends everyday after school.

Last year Sarah Keenan, life skills coach at Holland Bloorview, spoke about how research shows friendship is associated with life satisfaction and good mental health in the general population. On the other hand, loneliness negatively impacts the immune system and heart health.

Children with disabilities tend to have fewer friends and smaller social networks than their peers, Sarah said, after reviewing 56 studies. She referenced an American study of 11,000 teens that found that “over 50 per cent of students with autism had no contact with friends outside school and were never invited to spend time with friends.”

Studies find that typical youth are more open to having a friend who has a physical disability than one with an intellectual disability, she said. However, interactions with youth with disabilities in general are often superficial on the part of typical youth.

On the weekend people were touched by the outpouring of social media support for the Peterborough student. After his mother posted about his friends giving him the cold shoulder, tweets poured in from sports teams, actors, singers and politicians, all sending him birthday greetings. And strangers and media came to his party at a bowling alley that night.

That's great, and I'm sure it was a huge boost to this boy and his family. But how will this translate into changes in the boy's daily life? What about the 15 students he wanted to come to his party, who didn't even respond? How will their ideas or behaviour change? This was a feel-good one-offone tweet sent, one event attended. Inclusion for youth with disabilities is so much more complicated than that.

This morning I heard from a parent in Vancouver who sent me a link to a video about her son, with autism, and Club Gan elementary school's efforts to ensure he was included. Make sure you watch it. I was crying tears of joy by the end. This is the thinking behind Club G.

But then I thought about it and my pessimism returned. This is elementary school. Our own experience has been that authentic friendship is possible during those early years, when kids are receptive and a school makes disability awareness and inclusion a priority.

It's in the high school years that things break downwhen the focus becomes much more academic, schools are less invested in character development, education for students with disabilities often becomes segregated, and teens themselves cringe to be seen as different.

According to a U.S. National Institutes Health Funded Study led by Holland Bloorview researcher Gillian King, the teen years are particularly difficult for youth with disabilities. While peers become involved in a growing array of activities that widens their social network, teens with disabilities tend to stick with the same activities, often with family members.

This is a deep, difficult cultural problem, not one that can be solved on social media.

Monday, March 23, 2015

Letting go

By Madeleine Greey

“Okay ladies, here’s your homework. Figure out what you’re willing to let go of. Make a list. Then prioritize it over the first year of your daughter's independence.”


I looked over at Margaret and her jaw hung in awe.

I locked eyes with LIGHTS senior facilitator Laura Starret who had just dropped this bombshell. She returned my glare with a happy little smile that said “Good luck with this one!”

It’s that happy little smile that kept us going.

Margaret and I—two single moms—had signed on for a momentous task: assisting our adult daughters into supported independent living.

My daughter Krystal, 25 (above right), has Down syndrome. Her roommate Karen (above left) is 26 and has Kabuki syndrome. Both young ladies are bright, able, courageous and developmentally delayed. They knew they wanted to move out of home but couldn’t do it alone. Via LIGHTS—a program in partnership with Community Living Toronto
that supports innovative housing options for adults with intellectual disabilities—our two families connected and figured this out.

LIGHTS is dubbed a for parents planning independent living for their adult children and on a cold, winter evening last year, Karen and Margaret, Krystal and I, all found ourselves at a LIGHTS meeting facilitated by Laura. In fact, we collided on a bulletin board. Each of us had placed a neon-coloured stickie on the “ready to move out in six to 12 months” section.

Krystal and Karen had attended the same high school and while they weren’t really friends, those stickies got them wondering if they could be roommates. They wanted so many of the same things, like a downtown, east-end apartment with laundry facilities that was walking distance from the subway and grocery shopping. Plus, they wanted a third roommate who didn’t have an intellectual disability but was their peer—someone who could be a role model and mentor and was interested in getting free rent in exchange for about 10 hours of support every week.

How did they know this you might ask? The answer lies in umpteen LIGHTS meetings, incessant planning and lots of visualization.   

Pragmatic and impatient, I found this process maddening, but did manage to spot magical balloons of progress float and pop along the way. Laura knew just what to say to get both of our daughters talking—unleashing a torrent of ideas, fears and dreams that neither daughter would have felt comfortable sharing had Margaret or I piped in. We all learned to listen and wait, until that fateful day in June when it was time to start hunting for an apartment. became our best buddy. An aggregate search engine, PadMapper provides listings in the neighbourhood of your choice. We got to know the rental market quickly. Seeing the apartments made it less abstract for Krystal and Karen who were better able to say what they liked and didn’t when standing inside the real thing. The more we looked, the better we knew what we wanted.

Laura had warned us that the process would jump into second—if not third or fourth gear—once we started hunting for an apartment. Margaret and I were quickly overwhelmed with rental applications, negotiating leases, credit checks and securing tenant insurance. It was a steep learning curve that landed us a lease on September 13th for a three bedroom, renovated duplex apartment a block away from Woodbine subway station. It seemed only apt to call it KK House (in honour of Krystal and Karen).

But KK needed their third roommate before they could move in. We started an active email campaign posting our ad throughout the disability community, U of T Housing, plus colleges offering disability studies or support worker programs. CVs began to roll in and we conducted half-a-dozen interviews at the dining room table of the yet-to-be furnished KK House.
Maggie, our chosen mentor, is a York grad student with no background in disability. She's into theatre and English and is a dramaturge and playwright. She found out about the job through her church.

On Halloween, Krystal, Karen and Maggie moved in. They doled out trick or treat candies to their neighbourhood’s little goblins and started to get to know each other over dinner. Boxes were unpacked, milk and butter went in the refrigerator and posters went on the walls. Margaret and I had done our homework and knew what we were ready to let go of. Everything was planned out but nothing had been put into motion until that night.

Of course, things were bound to happen once the independent living began. The smoke alarm went off, the toilet handle broke and there were squabbles over what was shared and what was not in the kitchen. Both Krystal and Karen expressed freedom from “The Tyranny of Mother” in private and individual ways.

We all expected some bumps ahead.

But what we didn’t foresee was the power of dinner together. Maggie, Krystal and Karen had agreed to planning, shopping and making three budget-conscious meals together per week. While brainstorming over recipe ideas, delegating shopping errands and manning the stove, the three have become a family learning a lot more about each other than food preferences.

Two poster boards went up in the kitchen: a monthly calendar where everyone entered their commitments outside the house and a big white bulletin board announcing the week’s meals and menu, along with quick questions and reminders to one another.

Maggie deftly straddles the dual role of mentor roommate and contracted employee/tenant. She has learned to recognize and mentor Krystal and Karen’s varying needs without becoming a caregiver. In other words, she shares a home with them, offers guidance and leadership, but has her own busy, independent life too. Margaret and I meet with Maggie weekly or bi-weekly to review, plan and strategize. All of us have come to realize that regular and thorough communication is the oil that lubricates this machine. Whenever there’s a problem, we all try to talk about it, no matter how uncomfortable and while we don’t always find instant solutions, progress is usually made.

Back to the homework Laura assigned months ago, that business about “letting go.” It’s been the single most difficult part of this project, hurting more than any one of those airless, suffocating budget meetings or the packing up of Krystal’s childhood bedroom and putting it in a moving truck. The grief ran deep and terrified both of us, bringing up painful memories of her father’s death five years ago.

Parenting a child with a developmental disability is one hell of a job. We invest years of pain and joy in the process and letting go of it doesn’t just happen because you complete your parental homework—or not. Every time my daughter accomplishes another independent task, be it turning off the smoke alarm or taking pride in a meal she prepares, I can let that thread between us fall a little slack while knowing where the real bond lies.


Thursday, March 19, 2015

Parenting my one-of-a-kind kid

By Beth Dangerfield

Three days before this picture was taken we rushed my daughter Abby into the emergency room. She had a stomach bug and wouldn’t eat or drink. For most kids this is a routine problem that can easily be resolved. For Abby, this is a crisis.

When she stops eating and drinking, Abby's body starts to break down quickly and critically.

When the rest of us are ill and lose our appetite, our bodies use fat for energy to sustain our necessary functions. Abby’s body isn’t able to do this—the enzyme that converts fat into energy doesn’t work.

Abby has a rare genetic metabolic disease called Long-chain 3-hydroxyacyl-CoA dehydrogenase (LCHAD) deficiency. When she’s sick and stops taking food and fluids, her body doesn’t have anything to use as energy. Things get really serious, not just with her muscles breaking down, but with her kidneys and heart. The way I explain it is that hospital stays are a necessary part of Abby’s treatment. Her disease doesn’t get better and, to our knowledge, it won’t get worse. When illnesses arise, being in hospital is essential to keeping our daughter safe and managing complications.

Our recent hospital stay, which wasn’t the worst or longest, made me reflect on our journey parenting a child with a rare disease. Feb. 28 was World Rare Disease Day. As the last day in February comes and goes each year, I take comfort in knowing that the circle of people with whom we share so much in common is far-reaching, especially since disease-specific support is hard to come by. These are people who understand that our parenting journey is unique.

Parents as experts

All parents are the expert on their child. When your child has a rare disease, you become the expert on that disease. While we have an incredible team of metabolic doctors that works with us and is in contact with emergency room staff and pediatric teams, when there’s an emergency, they aren’t frontline responders. We’re the initial source of information on Abby’s disease for frontline doctors and nurses. Our role as experts and advocates is amplified.

We can tell you Abby’s highest ALT and AST levels; we can tell you a treatment for unusually high and increasing CK levels in her blood; we can tell you what to watch for to know if her body is breaking down muscle; we can tell you why we are testing for ketones in her urine; we can tell you how to bring the CK levels down and predict with almost exact accuracy how quickly her levels will decrease. We know this disease. We bring a wealth of information to the table. Without that information, the care isn’t complete. This responsibility feels immense.

Not only do we have to explain our daughter’s condition to health workers, but because prompt, appropriate treatment is imperative, we must insist on playing an integral role in her care. This assertiveness about our medical knowledge and experience isn’t always met with a smile.

The trouble with trust

Trust in health care is important. But it’s hard for us to trust when we’ve never met a doctor or nurse outside our metabolic team who knows Abby’s disease. The “I don’t knows” are frequent and feel frightening. We must ask lots of probing questions, request clarification on everything, inquire about any lack of urgency and insist on attention to every little thing. This trust issue goes both ways. It was difficult for our doctors this time to trust what we were telling them about the best way to care for Abby. “You’re not letting me help her get better” I told one night nurse. It wasn’t her fault—she just happened to be in the room and I was pushed to the limit and almost in a panic. When dealing with a rare disease, the traditional doctor-patient-family relationship doesn’t apply. A new type of partnership must be forged and we have to trust each other in different ways to provide the best care. This isn’t easy.

Trying to manage complex, fragmented care

At one point during our recent hospital stay, I had a specific question for a doctor. To get to the doctor, the question had to go through a chain of command of four people. This is a system I’m trying to be patient with and accept. I mention this example only to illustrate how complicated rare disease care can be—in every respect. It’s not direct and involves many people, delays, mixed messages and miscommunications and, of course, a great deal of uncertainty. This applies to our hospital stays, but also to the general maintenance and monitoring of Abby’s disease when she’s at home.

Abby had her first crisis
—a cardiac arrest40 hours after she was born. Because of this early life-threatening emergency, Abby’s motor skills, especially her speech and language, are delayed. As a result, we’re seen in four health centres by eight different clinics, in addition to the therapy we receive at home. Each doctor or therapist works separately. While there’s an understanding of the bigger picture, appointments and goals are set independently and progress is assessed in isolation. Our care is fragmented and uncoordinated. Managing that care while in hospital, and in everyday life, is a full-time job. Even though I dedicate most of my time to it, the expectations regarding Abby’s care are impossible to meet.

When you have a child with a rare disease, it feels like you're parenting with the volume turned up so loud it drowns out everything else. Everything is extreme. Everything is intense—the to-do lists, the planning and running around, the worry about the present and the anxiety about the future. The good news is that this amplification also applies to the good stuff. The little things carry a lot of weight and are very satisfying: the calm and happy moments, the steps forward and the personal growth. For me, what's most deeply rewarding is watching Abby continue to land on the wrong side of the odds as she exceeds expectations in every way.

We only spent three nights in the hospital this time around. We were discharged just in time for Abby's fourth birthday party. It’s hard to believe it’s been four years since I heard about LCHADD for the first time. It feels like yesterday that I was standing with the neonatal fellow in the hallway of the NICU, listening to her tell me that Abby’s newborn screening results were abnormal. I could take you back to the exact spot where that conversation took place. It wasn’t a diagnosis at that point, but it might as well have been. That was the moment our rare journey began for me.

If I had one wish and could take this disease from Abby, or make it disappear, I would in a heartbeat. It’s too much. It’s not fair and she certainly doesn’t deserve to have to live within the confines of LCHADD. But I have to admit, there are moments, many of them, where I feel a sense of pride about how unique she is and about how we have survived so many rare 
firsts.” There isn’t a day that passes where I don’t feel proud to be by her side through this. I hope I'm able to pass this feeling along to her as she grows upto convey to her that being “rare” isn’t easy, but it’s one of the things about who she is that makes her outstanding.

If you’re a parent of a child with a rare disease and are interested in group support, please feel free to contact for information about the Rare Disease Foundation Parent-2-Parent Resource Network. This is a monthly group I participate in.

Thursday, March 12, 2015

Jean Vanier wins $2.1 million prize for 'advocacy of belonging'

Canadian humanist Jean Vanier is the 2015 winner of the Templeton Prize, a $2.1 million award for his work bringing adults with and without intellectual disabilities together to live and work as peers in 147 L'Arche communities around the world.

The Templeton Prize, established by the late American financier and philanthropist John Templeton, recognizes someone who's contributed to affirming life's spiritual dimension, through insight, discovery or practical works.

"Isn't it vital that the culture of winning so common in our societies today, be transformed?" Vanier said in thanking the judges. "A terrible rift is created between winners and losers, between the so-called normal and the so-called abnormal, between the rich and the poor."

Vanier said that the people with intellectual disabilities he's lived with for 50 years "have taught me more than all those teachers and professors in schools and universities that I have attended. They have taught me about what it means to be human."

In an interview with BLOOM in 2013, Vanier said: "We need to understand that our treasure is not in our power, but in the deep acceptance of who we are, and who we are is different but we are all people. If we try to be who we are not, that tension will someday explode."

Read Vanier's acceptance speech.

Wednesday, March 11, 2015

A son's injury prompts a dad to give back

By Louise Kinross

In 2011 Amir Karmali’s son Kaylum was accidently kicked in the head during a soccer game. The next morning he couldn’t walk and was hospitalized. Two days later doctors said Kaylum had suffered a stroke.

“They said they’d never seen that type of soccer injury before,” Amir recalls. “I spent the next eight hours on top of my son’s bed crying and watching him while he slept.”

Kaylum began intensive therapy as a daypatient at Holland Bloorview. But just when he was improving and about to be discharged, Amir was laid off from his job. “I couldn’t make sense of why this had happened to me. First my son getting injured, then being let go from work. I crashed and experienced a lot of stress, anxiety and depression. I googled ‘how to deal with stress and anxiety’ and a few things came up: meditation, exercise, and helping others. I decided there was a greater purpose for me, that if I didn’t use this experience to help others it would never make sense. I needed to help others make change.”

This week Amir was recognized with other Holland Bloorview staff for his role in engaging parents in the creation of clinical simulations that are used every month to train staff and students in client- and family-centered care. The team received one of Ontario’s
20 Faces of Change awards from The Change Foundation for its “patient engagement and family-focused change in the province’s health care system.”

It reflects the critical role Amir has played in building Holland Bloorview’s family leadership program, which he chose to participate in after his son’s accident as a way of giving back.

The family leadership program gives parents a voice on hospital decision-making bodies, as faculty at education events and as mentors to other parents raising kids with disabilities.

Amir joined as a volunteer on our family advisory committee, then applied for a part-time position managing the family leadership program—a radical departure from his background in the restaurant and corporate world.

“I wanted to help people. I didn’t want to let my son’s experience define us in a negative way. I vowed to use it to be a part of making change at Holland Bloorview. Yes, this happened to my son and my family was thrown a curve ball, but I wanted to hit a home run.”

Amir now works full-time as a family-centred care specialist on Holland Bloorview’s family leadership program, which has over 120 client and parents members.

“Family leadership is about family engagement, empowerment and activation,” he says. “It’s the program that brings the families’ perspective, voice and wants and needs into all of our discussions to ensure our programs and services meet their needs.”

Amir’s background in human resources and education gave him the perfect skills for recruiting and training parents, then matching them with projects in the hospital and ensuring that staff know how to “authentically engage our families. We want to know how our family will make a difference. They’re not there as a rubber stamp. I work with staff to define the purpose and goals of the family role and to set clear expectations.”

Amir says the key to the program’s success is making great matches. “We didn’t place families that we didn’t have. We had no problem saying no, we don’t have a family that matches that skill set or has that experience or has used that service. We also ensure that our families are in the right place to give solution-based feedback to the hospital because the program isn’t about advocacy or a place to vent. We want to learn from their good and not so good experiences.”

Amir says Holland Bloorview has invested in family partnership, hiring him full-time, dedicating other resources and changing the culture of how it makes decisions. “Nothing happens in here without the family’s perspective anymore. Staff come to me for family feedback at the conception of an idea, not when they’re about to launch a program.”

Amir says his son Kaylum has recovered and is playing soccer again and thriving. “I had a great support system of family and friends and I couldn’t have kept going without them.”

He hopes his experience finding a new career path encourages other families to find something positive in the challenges their children face. “I knew there was a bigger purpose. I wanted to do something that was bigger than me.”