Thursday, August 27, 2015

Mom knits 'special needs' story into art

By Louise Kinross

Kathryn Ruppert-Dazai (above) is a Toronto textile artist who plans to create an art series called A Failure to Thrive. These large-scale works will reflect her experience parenting a child with special needs.

BLOOM: Can you tell us a bit about your son and how he's affected by his disability?

Kathryn Ruppert-Dazai: Well, our son was our second child, so straight away I knew something was wrong. He was born with very noisy breathing that made him sound horrible. People would stop me every day and ask me if my baby was all right. No, he wasn't. But we were told it was normal.

My baby was afraid to eat and wasn’t gaining weight. We tried everything to get him to eat and I was on medication to increase milk production but he wanted none of it. No bottle type or formula worked.

Sometimes, though, if I sat quietly in the dark in my stairwell he would drink a little bit of milk. So that’s what we did. One day a Mom friend came over and offered to feed him. She had no problems breast feeding her kids and lots of milk and he pulled away from her breast like it was a threat. I was losing my mind.

Nobody had answers, so I kept going to the emergency room to show my sick child to different doctors looking for help. I was grateful that he wasn’t my first child because when doctors said I didn’t know how to breastfeed properly, I’d say that’s not it, my first daughter was perfectly healthy and breastfed fine. I would tell them he’s afraid to eat. Our doctors told us to force feed him at all costs. I honestly think they assumed I was unfit.

My husband had the job of force bottle feeding our son in the basement and I could hear him scream like he was drowning. That whole time period was a blur. I thought I was losing my child but nobody had answers so I would spend the day taking care of my two year old and try every 20 minutes or so to feed the baby in the dark stairwell in hopes he’d eat. Then at naps I’d watch his chest for laboured breathing and drive to emergency every time he looked like he was breathing with his whole ribcage. They would triage him in. He had a couple of unnamed infections and he’d get x-rays and IVs and we’d stay in the hospital for days. We were always discharged and left without any answers but at least he’d have eaten because of his IV.

I kept going to the hospital for help, seeing specialists and following all the doctors’ advice. We thickened his foods, started him on solids and gave our infant his medications religiously. When our son was six months his doctors suggested a feeding X-ray and they found he had been aspirating his food all along. He wasn’t able to coordinate his eating with his breathing properly. The chest infections were milk in his lungs and he could have died so many times in those first six months.

He had emergency surgery to cut away tissue from his larynx. That saved his life. The day after the surgery he was starving and drank so much breast milk. I cried. I thought it was all over and we were good. But it wasn’t over. The list of things we were told about our son is long: laryngomalacia, GERD, ‘failure to thrive’ with hypotonia, and later we learned he had global developmental delay, sensory processing disorder and childhood apraxia of speech, possibly presenting now as a phonological disorder.

Everything was difficult for our son: eating and fine motor skills. He couldn’t sit up, walk, control behaviours, sign, or speak. We were given his MRI results last year and they showed that our son’s brain has two profound areas of congenital malformation. We know it’s genetic. The doctors confirmed that when I asked if it could be something I did when I was pregnant. I told them that when I was six months’ pregnant we were renovating an old cabin in the woods and I thought I had caused everything. They said in order for my son to develop such severe malformations from to the environment, I would have had to have been pregnant in Chernobyl. It hurt to hear it put like that.

So at this point it’s an unnamed genetic disorder that’s not my fault (though my neighbour thinks it’s because of my age).

Today our son is almost five and he’s awesome in every way possible. He has worked so hard and has been in speech, occupational, behavioural and physical therapy for years. He is walking, has stopped self-harming and recently started speaking. I believe that the early intervention therapies have been the key to unlocking our son’s abilities. What our child has is neurodiversity. His brain has a different anatomy. There is no one perfect brain in the world. His brain is as it was meant to be.

Early intervention therapy and the homework we do is helping to set pathways in his brain for speech and motor planning. It’s hard and it’s been slow. He kicked his speech therapist and his OT today but he also caught a basketball in his hands for the first time ever.

Our home looks like a therapy gym and our tub is currently full of coloured balls because some nights it’s our ball pool. It’s taxing on him and not being able to be understood makes him so frustrated.

It’s hard on the whole family because his diagnosis of apraxia requires two sessions of speech therapy per week. Nothing close to that exists in the public health care system. So, like most families, we’ve had to do private therapy to supplement the inconsistent public therapy and it’s beyond horribly expensive. But it’s working and he’s worth everything so I'll do anything I can for him. I have no ‘off’ button, I’ll never stop working for his happiness.

BLOOM: Can you describe the kind of work you do as a textile artist? Why do you want to address your experiences with a child with disabilities in your art?

Kathryn Ruppert-Dazai: Sharing stories is an essential part of being human. I am a storyteller transforming a format traditionally reserved for painting. I use a toy knitting machine and a computerized knitting machine to create large-scale 'knitted canvases' together with hand-crocheted, often recycled fibers to relay narratives. I work large scale. The works are usually about six feet by six feet, like large 'knitted paintings.' With the tactile nature of textiles I am able to explore more difficult subject matter while still inviting the viewer into the work. In keeping with the tradition of visual storytelling through textile art and craft, I’m making works that tell my story. My past works have been semi-autobiographical and so now that I have children and am able to get back to my studio, the new works will focus on maternity and motherhood. I want to illustrate my stories and others’ stories about parenting and especially special-needs parenting. Stories that are often not given a voice in contemporary art because it’s not sexy subject matter.

BLOOM: You chose the title A Failure to Thrive for this series because your son was labelled with that diagnosis when young. My son was also diagnosed with ‘failure to thrive’ and I found it devastating (because every mother does everything she can to help her child thrive). How did this label impact you?

Kathryn Ruppert-Dazai: The label is devastating. It’s such a horrible term to put on a child. It made me think my son was ‘failing’ because I’d failed him. It’s a horrible weight on any parent, especially if you have no idea why your child is ‘failing.’ It’s scary, with guilt. The term ‘failure to thrive’ replayed itself in my head so many times over those early years and that’s why I named my new art series after it, in honour of that horrible label. I know they tried to rebrand that department of the hospital and it’s now called Pediatric Consultation but most medical staff members still used the ‘failure to thrive’ title around me and my son.

BLOOM: You plan to cover a number of parenting themes in your art. You mention “shame” and “feeling ostracized” by others with ‘normal’ children.” In what ways has your experience made you feel isolated and ashamed?

Kathryn Ruppert-Dazai: I felt ostracized and alone a lot of times. I felt shame too. My child spent a lot of time screaming and I truly thought nobody wanted to be around us. I’m sure some didn’t and I lost some friends. My child would sometimes bang his head on the ground in public and I would try to follow the behavioural therapist’s strategy but I felt like everybody desperately needed to stare and watch us. I would feel hot inside and embarrassed and just not want to ever leave the house. But like most mothers I had a rebirth and found my courage and became a better mother because of those experiences.

I’m so over those old fears and I’ve found some support groups online for people with similar disorders and their parents. It’s been really helpful to have an online community to ask questions to regarding issues around my son’s specific conditions. I remember early on taking a course to learn to communicate with my non-verbal child. It was an amazing course and the other parents involved had children who were non-verbal also—but each with different reasons. Some had genetic disorders and some were undiagnosed like our son was at the time.

In the end I found it difficult to confide in other special needs parents too. It seemed like everybody had it hard and in a different way so you couldn’t complain for fear of hurting someone’s feelings. I didn’t want to complain about my child’s issues when I knew some of the children in the classroom were never going to speak because of their specific genetic disorders. So I found it hard to connect with other special needs parents for that reason and because between therapies and working, nobody could spare time to get together. Plus, who has money for babysitting when everything you have is going to private therapy!?

BLOOM: I noticed that you have some art works planned related to therapy and our healthcare system. Can you describe what you hope to cover in one of these?

Kathryn Ruppert-Dazai: One of the artworks I’m making is called ‘On Block, Off Block.’ I plan to knit the words in repetition on a large scale and exhibit it inside a glass shadowbox. If I’m accurate about it, it should read: ‘Waiting List… On Block, Off Block… Age Out of Services.’

My hope is to open up a dialogue about the public therapy block system and how insufficient it is for children who require consistency in their therapy. It’s a therapy model based on funding in my opinion. For those who don’t know, the ‘block system’ means your child will receive roughly eight weeks of therapy, once a week, from a therapist and then go ‘off block’ for six months, with no therapy.

I remember our developmental pediatrician saying that I would have to supplement speech therapy for our son, so I should save roughly $12,000 to $15,000 a year and that he could use some occupational therapy too, which would be additional. I thought she was bananas. Seriously, this is Canada!

So, I set out researching and calling every number I could find looking for the therapists that were specifically there for high-needs cases—for children with neurological disorders who required therapy on a regular, consistent basis. But no, I found out after a lot of researching, phone calls and visits with my MP’s aid that in fact there is no building that houses therapists for free therapy in the amount that each case requires. Just like there are no unicorns.

BLOOM: What do you hope to learn by exploring special-needs parenting through your art? And what do you hope people who see the exhibit take away?

Kathryn Ruppert-Dazai: I don’t know. I’m not sure. I’ve been thinking about this series for years so I feel like it’s given me some perspective on my parenting and on our life. I would love other special needs parents to see the work when it’s finished and feel maybe less alone. We all love our children. This is in no way a series of works complaining about my child or complaining about how the health care system let me down.

I am trying to put the stories out there to share the human experience and from that honest place to start a dialogue with the community. I’d love for people to stop using the 'R word.' If I get one person to see the works and stop using that word, then all the hours I spent knitting in the basement will be 1000% worth it for me.

I feel grateful for the life experiences I’ve been given. It was hard to find my way for a while but now I’m a damn good mother and I never compliment myself on anything! Ever! But I mean it. All I want is for my children to be happy and seeing them both happy is my deepest pleasure in life. I hope they like the works too and aren’t offended by my sharing their life experiences with the art public. Who wants to live behind a fa├žade? Life is too precious not to share the experience with each other.


Wednesday, August 26, 2015

'P-what?' A dad teaches doctors about child's rare condition

By Louise Kinross

Yesterday a dad came to visit me.

His name is Syed Haider and his daughter Zahra, 5, has pantothenate kinase-associated neurodegeneration (PKAN)—a progressive genetic disease caused by mutations in the pank2 gene. A missing enzyme damages nerve cells and causes iron to accumulate in the brain. Syed’s story of having a child with a rare disorder reminded me of another dad, Matt Might, I had read about in this
New Yorker piece. Matt wrote a blog post that went viral and moved forward research on NGLY1 deficiency, a new syndrome his son has been diagnosed with. In fact, Matt and another parent co-authored a journal paper on how this scientific discovery happened thanks to advanced DNA sequencing and Matt’s ability to connect with families and researchers worldwide through social media. I tweeted Matt and he said he’d be willing to connect with Syed.

Here’s a bit more about Syed and his daughter's journey.

BLOOM: What is PKAN and how does it affect Zahra?

Syed Haider:
PKAN is a neurodegenerative condition caused by a mutation in the pank2 gene. It falls under the spectrum of Neurodegeneration of Brain Iron Accumulation (NBIA) disorders. It has a rapid rate of progression. Some of the major symptoms are dystonia (uncontrolled movements), dysarthria, dementia, spasticity, writhing movements and toe walking. In Zahra’s case, when she was one, she couldn’t sit by herself. When she was two she would stand up and fall. These kids seem to be clumsy in the beginning but as time passes problems become evident with walking, talking and swallowing. Zahra falls down like a tree falls. These falls can cause injury to the face and chin.

BLOOM: How many cases are there in Canada?

Syed Haider: To the best of my knowledge, I've only been able to find eight or nine. There are about 300 cases in the world.

BLOOM: What does Zahra enjoy? What is her personality like?

Syed Haider: Zahra is a pretty social person. She likes being around other children and people. She likes to dance, and the reason she likes to dance, I believe, is it helps her with her dystonia. It reduces the pressure on her body when she’s dancing. She doesn’t have any typical way of dancing. When there is music going on she will move with the flow of the music. She does walk, but she toe walks, which causes her to trip and fall down. She doesn’t know how to defend herself if she falls. She doesn’t have the reflexes to put her hands out. She likes swimming. She feels kind of free in her body. She likes to play with cats and pigeons. I buy feed from the dollar store and put it in a basket and there’s a flock of pigeons that come on our balcony. Zahra enjoys the pigeons. She is reaching to a stage where she realizes she isn’t able to do things like other children can do. She has a strong personality in terms of emotions which I’ve noticed with other children who have PKAN. They don’t look for sympathy.

BLOOM: Tell us about the four year journey to have her diagnosed.

Syed Haider: That was after enormous visits to different hospitals, genetics, family history trees that they kept making, MRIs, but they couldn’t figure out what this thing is. When she was one I took her to the pediatrician. He said “It’s your first child, you guys are being over-protective. Once you have the second one you won’t be so concerned about it.” By the time she was four she looked normal physically, but she wasn’t achieving her developmental milestones. She would walk and fall over something as small as a carpet. And in terms of communication she wouldn’t be able to say a complete sentence. She would use words or sounds.

BLOOM: How did you get the diagnosis?

Syed Haider: One day I picked up the Metro newspaper at the subway on the way home from work and read an article about advanced research that SickKids is doing. They mentioned whole genome sequencing and how it can help to develop research techniques to avoid someone developing a disease in the years to come. The next day I walked in to the hospital and started talking with people, and they sent me to the genetic department. I learned they were doing a study, but that the enrollment was closed by the time I got there. When I explained the way Zahra functioned and how we don’t have an answer, the doctor said ‘Let’s try to find out why she is the way she is.’ She enrolled Zahra after all. All that was required was a blood sample from all three of us. Then we waited for eight or nine months for the results.

BLOOM: What was it like to have someone take your concerns seriously?

Syed Haider: It felt somewhat of a relief that someone was willing to listen to us the way we want them to listen, and take initiative in helping us out. But when they finally told us why Zahra is the way she is, at that point we felt ‘Why did we ask for it?’ It’s a catch-22. But today, one year down the road, I think it was the right decision for us to know. The way I look at it, if it doesn’t help Zahra today, maybe 30 years down the road whatever I can do, with everyone else around me, will benefit someone else.

BLOOM: How was PKAN explained to you?

Syed Haider: There were three geneticists and a social worker. They had a box of tissue papers. They were out of words themselves because the head of neurology wrote on the letter clearly that you need to choose a setting in which you can comfort the patient while explaining the situation. They said this is the second case in the history of SickKids. They left us in the room alone for half an hour when my wife and I couldn’t control our emotions. They were with us for the whole afternoon. We were in that room for four hours. There’s no solution to the disease but they couldn’t tell us how it would progress in Zahra.

PKAN is an autosomal recessive disorder and my wife and I are carriers of the mutated gene. That’s the only way Zahra got it.

I asked ‘Was there something that I could have possibly done when we thought of having a child?’ The doctor clearly said that if Zahra is your first child, with the way this mutation occurs, doctors couldn’t have known. They wouldn’t have known where to look. The chance of it happening is almost impossible. One copy of my gene is normal and one copy is mutated, and it's the same thing with my wife. In order for Zahra to have it, out of all 60,000 genes she took from each of us, she had to take the mutated one from me and the mutated one from my wife. The only answer one is left with is God meant this life to be on earth so it is.

BLOOM: What is it like to have a child with a rare condition that so little is known about?

Syed Haider: The hardest part was I ended up losing my job. Last summer I spent my days and evenings sitting in the library, which happened to be across the street from our home, reading books or ransacking the Internet. I had to study exactly what this disease is. My priorities in life had changed suddenly, taken a 360-degree turn. I couldn’t concentrate on my work or my career, naturally. I was on the web 24/7 and the more I got into it, the more I got answers, I said ‘Why did I ask for this?’

I learned that the symptoms and progression are so severe that I wouldn’t want my enemy to have this. As a parent, to find a cure, I first have to understand the problem. But the deeper you dig, the more difficult it gets emotionally. It’s like a double-edged sword. You can’t live with or without the information. I was focused on finding people in a similar situation and I found the Neurodegeneration with Brain Iron Accumulation (NBIA) Disorders Association. It supports families affected by the group of disorders that includes my daughter’s condition. Patricia Woods, the founder and a parent, has worked devotedly for almost 20 years to help other families.

BLOOM: What are you trying to do in terms of raising awareness about PKAN?

Syed Haider: Most doctors are not aware of the condition. When I tell them she has PKAN they say ‘P’-what? I met a mother from Newfoundland whose son has a type of this condition. Her son was diagnosed a month after Zahra. It was good that we both met and talked and were on the same lines in terms of wanting to form a non-profit. We have registered as NBIA Canada and are waiting for charity status. Our two objectives are to raise awareness in the medical community and in the general public for funding. We also want to enlighten the community that disability is not a choice. We are in the very initial stages with NBIA Canada, but with guidance, hard work, and a passion for cure and with the help of others around us we will eventually succeed in making a difference in the lives of these children.

BLOOM: If you're able to get funding for research, what do you hope to do?

Syed Haider: The concern we have is there’s only one doctor in Portland, Oregon, Dr. Susan Hayflick, who’s working to find a cure. Dr. Hayflick has a small team of sincere and devoted people working to find a cure. She and her team discovered the gene associated with PKAN in 2000 and since then they've discovered four more NBIA genes. We want to help her out by bringing in other researchers who can take on bits and pieces of the research.

You can learn more at NBIAcure. If you have any advice for Syed on raising awareness of, and research dollars for, a rare disorder, e-mail him at
syedbilalh@gmail.com.



Monday, August 24, 2015

There isn't a detour around grief

By Louise Kinross

A very wise person—Julie Keon, who wrote What I would Tell You: One Mother's Adventure with Medical Fragilitytold me that you can’t grieve something you haven’t lost.

So, you can’t choose to preemptively grieve an event, so that you can avoid mourning the loss when it actually happens. It seems like a very human thing to do—to imagine that there’s something we can do to avoid pain. But it’s not possible.

This may explain why when I was speaking with someone this morning about my son and his dreams, I started crying when I remembered that for so many years he wanted to be a zookeeper. I thought I'd pushed that memory right out of my mind.

But this morning I recalled how a number of years ago I’d contacted a few zoos and farms to find out about volunteer opportunities, and been told that volunteers have no contact with animals at any of these places. So it was a non-starter in terms of getting experience.

And then I’d googled to see what kind of education you had to have to become a zookeeper and realized that it typically required a university degree (which my son wouldn’t get) and skills like public speaking for giving talks about the animals (and my son doesn’t speak).

So after a number of years of asking my son what he wanted to do, and him signing that he wanted to be a zookeeper, I stopped asking. Because I didn’t know how to tell him that it wasn’t on the table.

The topic of zoos came up recently because he was part of a camp program that involved visiting local zoos and farms. He was ecstatic. One day he and his worker showed me the sign they’d devised for tapir (see above), his favourite animal: tapping your nose with the letter “T” because of the short trunk it uses to snatch fruit and leaves.

Maybe, now that he's left the school system and we're looking at realistic volunteer jobs, it was that reminder of his love of the tapir that caused me to voice the ludicrous “zookeeper” dream. 

And my chest stung and for a moment I thought I was hungry, till I realized my heart was hurting and my cheeks were wet.

Tuesday, August 18, 2015

Why is beauty essential for disabled children, but not adults?

By Louise Kinross

In 2006, Holland Bloorview broke the institutional mould when it opened the doors of an extraordinary building that would operate as a children’s hospital, but not look or feel like one.

Banks of windows and terraces flooded the building with natural light and connected kids with the surrounding ravine and neighbourhood, while the interior was designed with quality, home-like materials such as wood, glass, ceramic tile and limestone. Instead of in-your-face primary colours, there were warm accent colours of deep plum, granny-smith apple, ochre yellow and gentle blue.

Interspersed with this soothing environment were “islands of interest”—pieces of art, interactive exhibits, a huge saltwater aquarium of exotic fish and breathtaking views of the skyline and ravine.

I remember talking with lead designer Anne Carlyle, who explained that the way we design a building conveys a sense of respect—or lack of respect—for its inhabitants.

“In most hospitals, children experience such disconnection from the normal rhythms of life,” Anne said. “Because this site bridges the cityscape and the natural environment of a ravine—with extraordinary views of both—we had the opportunity to reinforce that connection. The whole hospital is about rehabilitation and enabling children and their families to live as well as possible and the design is symbolic of that. It’s full of natural light, life, places to visit and things to do.”

The design of the building was 10 years in the making. I remember early on thinking that the research linking built environments with people's physical, social and psychological health was a bit overblown.

Then I experienced what it was like to work in a beautiful building. It did feel different to have constant exposure to the outside ravine and sky and natural light and to the richness of the interior design. I must have sent half a dozen e-mails to architect Terry Montgomery to express my surprise at just how big a difference the building made.

And then I would always come back to what Anne had said: “These materials communicate a kind of respect for human life.” They say something about the value of the inhabitants.

And so it was from this vantage point that during my holiday I toured a number of day programs for adults with developmental and physical disabilities.

Two of these were located in an industrial area, one of which I visited. The building was a warehouse that was divided into three units with concrete walls. Because of its industrial setting, it was cut off from any of the regular rhythms of a neighbourhood with shops and parks and houses. There wasn’t anywhere you could walk to, unless it was to another warehouse or business.

There wasn’t any natural light inside. There wasn’t anything of beauty, made intentionally for the people who attended the program.

There were hard-working staff making the best of a very difficult situation.

What message did this building communicate to the people who were transported away from residential communities and into that isolated industrial area everyday? What did it say about how these people are valued by the culture at large?

My understanding is that it’s very challenging to get a government-funded spot in one of these programs. The latest trend is for spaces to be offered for a fee to families. The fees seemed to range from $60 to $80 a day, with one program being $100 a day. At one program I visited, I was told that to the daily fee of $55, an additional fee of $200 would be added for an adult who required one-to-one support. Do the math on that annually, and you may be surprised to realize that for a similar amount of money you could easily send another child to university.

Universities are mini-communities, with everything from residences, parks and community centres to libraries and pubs.

Most are situated on lush, rolling campuses draped in vegetation. Buildings are a mix of traditional and modern. The former emulate Gothic stone cathedrals with vaulted ceilings, stained glass windows, marble floors and brass chandeliers. They convey a sense of history, wealth and exclusivity.

In short, they communicate a sense of respect and worth for the students who walk their halls.


Many young adults with a range of disabilities will walk or roll those halls as well, of course.

But for others who won't do post-secondary education or work, it's disturbing to see how quickly we rob them of their value. How quickly we remove them from the mainstream and warehouse them. And ask their families to pay good money for it.

Monday, August 17, 2015

When a clown is the best medicine

By Louise Kinross

Lorrine Peruzzo anticipated the daily unpacking and packing of special dressings in her daughter Katie’s pressure sores with dread.

Katie, 12, who was at Holland Bloorview following a hip replacement, “had to be restrained and she screamed the entire time and had a complete meltdown,” Lorrine remembers. “We couldn’t keep doing that.”

Enter Holland Bloorview’s therapeutic clowns, trained professionals who engage children with physical and emotional comedy and music, letting the kids direct the action as a way of empowering them.

The prescription, in Katie’s case, came in the form of Dr. Flap—known for her trademark flight cap—whose body had been playfully wrapped like a mummy, including her ukulele, in masking tape. While nurses attended to Katie’s dressings, her job was to free Dr. Flap from her bindings.

“It was hilarious,” Lorrine recalls. “Katie acted like she didn’t even know she was having the dressing changed. Everyone was shocked and amazed. It was an amazing distraction.”

Lorrine says that the presence of the clowns was equally therapeutic for her. “I don’t know if people realize this, but the clowns are not just for the kids. Whenever Katie’s in pain my stress level rises too, because I’m powerless to stop the pain. The clowns have the ability to bring that stress level down for her, which brings it down for me.”

Our therapeutic clowns also played a role in supporting Katie during her therapy in the rehab gym. “Her physiotherapist was getting her up and moving but it was very painful. You could see it in her face. She was always tense, always upset.”

During one particular exercise Katie needed to stand and rock back and forth on her feet. She refused.

The clowns Dr. Flap and Nurse Polo assisted. “Dr. Flap played her ukulele and Nurse Polo took Katie’s hands and started rocking her back and forth, like she was dancing. It totally took her mind off the painful physio exercise. She went from being ‘No, no!’ to ‘I’m dancing with Nurse Polo. This is fun!’"

In 2010, scientists in the Bloorview Research Institute conducted the
first study to measure the long-term physiological effect of therapeutic clowns on hospitalized children. They showed that even a child in a vegetative state and those with profound disabilities respond to the red-nosed performers with changes in skin temperature, sweat level and heart and breathing rate.

Jamie Burnett, one of the clowns involved in the research at the time, explained it this way: “When children come in here they lose all power. They lose control of their bodies due to some illness…and they have doctors telling them what to do, and parents telling them what to do. We allow them to come to a space of complete freedom and imagination…and go wherever they would like to go and that, I think, is so essential, not just in terms of being a human being, but in terms of becoming a healthier person. I am always amazed at the courage they show and I am always amazed at the beauty of their spirits…”


Please consider making
a donation to our therapeutic clown program which is supported by Holland Bloorview Kids Rehabilitation Hospital Foundation.


 

Thursday, August 13, 2015

My girl Nydia swims butterfly with one arm

By Louise Kinross

This morning I saw Nydia Langill swim in the Parapan Am Games. This is a photo of Nydia (in black swimsuit closest to front) from an earlier event.

I met Nydia when she was two at Holland Bloorview's Play and Learn nursery school. Her mom Claudia and I would take our kids and go for coffee after the sessions. Then we realized we lived in the same neighbourhood and could walk, with kids in wagons, to each other's houses.

I cried when Nydia came out on the deck this morning. She was swimming in a women's butterfly event. I had no idea she swam butterfly! I knew her best stroke was breast stroke. I've always considered butterfly to be the most gruelling.

Then her dad Brett mentioned that Nydia would be swimming the butterfly with one arm. One arm? Her other arm would be held motionless out in front of her. And she wouldn't be able to use her legs.

I can't swim more than a couple of effortful strokes of the butterfly with four limbs. 

The next thing I knew I was watching Nydia speeding through the water, propelled by one powerhouse arm.

I was in awe, watching all of the elite athletes, who adapt to such a wide variety of physical disabilities and differences. 

Bravo to Nydia and all of her Canadian teammates and all of the athletes representing other countries.


Wednesday, August 12, 2015

A helping hand? It depends on your kid's perspective

recent piece in Business Insider features this photo of a girl born without a hand who gets a new pink bionic one thanks to 3D printing. The hand was made through e-NABLE, a Google-funded nonprofit group of volunteers all over the world, including school children. In the Business Insider piece, e-NABLE's founder Jon Schull says: "The hands can have a magical ability to make a kid feel good about his or her special hand or arm, and give them some confidence. The other kids at school think they're really lucky. It turns out to be as important psychosocially as mechanically."

A mother writing in The New York Times' Motherlode column assumed her son, who was also born without a hand, would be just as excited about getting one that would make him look like a superhero. So were her friends, who flooded her e-mail box with a related video. But the boy had a different take on things.

"We were sitting on the couch, and he turned toward me. "I've been thinking about it," he said. "And I don't want a new hand."

"But why?" I was devastated. All that time, research and enthusiasm. He was throwing away a chance to have a five-fingered hand? He was quiet for a moment, then started to explain his three reasons.

First of all, he said, he didn't want to lose his sense of touch. "I don't want to lose the way things feel." This caught me off guard. I hadn't thought of how much he could physically feel at the tip of his wrist, how stifled it was under something else plastic.

"I can figure out how to do stuff my own way." It was true. Thaddeus had figured out how to leverage his arms, feet and neck to open jars, marker and pen caps, and even play baseball. "My brain just works different because of my hand, and I think that's a good thing."

I nodded in agreement.


"And my friends like me just the way I am," he said. If he started wearing a new hand, he explained, it would draw more attention to him—the kind he didn’t want. “I don’t think kids would be my friend because of me. They would just want to play with my robot hand.”