Missed milestones

By Katharine Harrison

When my son Max was a baby and a toddler I cringed and flinched and recoiled when the topic of milestones came up.

Milestones like crawling, walking, jumping, running, drawing, printing. You get the picture.

Contortionist I was—my heart and mind got sore. What did I do? How did I cope? Well I confess that I wept alone (my childhood taught me not to cry out loud). I also did not talk to friends about it as their kids were “typically” developing.

Why spoil their parade, rain on their day? I was taught better manners and not to be selfish. I just pretended to all that “I do not care.” I faked a lot. I faked that I didn’t care. I faked that I was interested in their kids as they learned to walk.

Then one day while sitting on a friend's stoop she said to me “Do you know how hard it is to be your friend? I can’t tell you about xxxxxx’s milestones because Max doesn’t make them.” I went quiet. She kept talking. I kept not listening. I wasn’t in the mood to fake it, but it was a natural thing now. 

I got up and walked away down the street to my home, to my “nest.” When she tried to call me in tears I refused to talk. I just didn’t pick up the phone. When my husband picked it up I wouldn’t take the call. I was numb, hurt and awake. If she had been faking and not sharing her child's milestones—then we were two fakers. An organic friendship based on “fakiness.” I made up that word but hey, it sounds just about right. 

Then after a few days I did pick up the phone when she called and I had a very carefully crafted message for her. Not the “F right off” one I had thought about days before. I simply said “If you feel the need to talk about xxxxxx’s milestones call your mum or one of your sisters.” The unsaid was “Don’t call me as I don’t want to be hurt” and “this milestone business is now officially an off-limits topic for us (don’t worry—we are still friends today and our kids are hitting legal age to drink next spring).

I have buried so much agony regarding missed milestones and patted myself on the back re the great job I did at accepting those losses. I was a hero. SuperMUM! Accepting all things in a single bound. Adjusting my expectations in a single bound. Leading other mums to accept too—in a single bound! Leading by example. Do as I say, not as I do.

But then one day it caught up with me and I realized that I was depressed and somewhat immobilized. It only took 18 years. Yep, you did read that right. So what, you may ask what, brought me to my knees?

It’s like this. Lean in and listen closely. I am a very involved mum with Max—medically, academically and socially—and I am also a very sensitive woman. Damn zodiac calendar (and my parents) had me born a Cancer.

This spring my son seemed down, unusually low as he is typically a very happy lad and very optimistic. You need to know also that Max doesn’t fill dead air. He talks to me about the important things. Okay, well sometimes it is Star Wars, but mostly he does talk about how he feels when he needs reassurance or advice or clarity.

Max said to me that he felt sad that his friends were all going off to college and university. He called himself a “loser.” You see Max is staying back a year to mature. He needs this time to continue his growing up at home in our nest. And he “gets” that he needs it. He will work on his grades and perhaps get a part-time job. He will learn more chores around the house and get out on his own more. Boring stuff but indispensable, too.

When he told me how he was feeling my brain rationalized it and I spoke rationally. Then when I played it over and over again in my mind I GOT it. He was feeling sad and unhappy as he was missing a “milestone.” BINGO. That’s it.

His friends were graduating and leaving home. He was just graduating. My stomach did somersaults. How could I not anticipate that one day the missed milestones “curse” would be passed down to Max? Well I was ill-prepared. I stumbled about in a fog of pain that crept back 18 years. It was like a Pandora’s box had been opened and I thought I had nailed that dreadful thing shut.

So, you may ask, what am I doing about it? I am accepting it as a natural passage in our lives. I am accepting that it’s a real feeling and I am offering the salve to myself and to Max that we need. I am now prepared to say “sorry that you feel blue” when he is down and to say “I am sorry that this has happened to you.”

I know who he is now—he is a confident, absolutely beautiful 18-year-old human being that I am overly proud of. And admitting that he is feeling sad and embracing it will not weaken him or us. It will make us a stronger unit. We understand each other now more fully.

As a mum I didn’t want to think that he ever hurt. Not like I did way back then! Now we have reached that “hurt” milestone and I did survive. He did too. I didn’t tell it to “F off.” I’m patting myself on the back.

Signed superMUM

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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 façade? Life is too precious not to share the experience with each other.

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'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.

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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 Fragility—told 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.

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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.

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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.

 

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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.

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

A 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.”

 

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Are you a special-needs parent? Dream, fail, do it again!

By Louise Kinross

When my son was about two-and-a-half, I called a family support line at Holland Bloorview and the kind voice at the end of the line was June Chiu. I was having trouble finding speech therapy for my son, and June listened, and called me back with some contacts to pursue.

June is an icon at Holland Bloorview. She has worked here for almost 22 years. Before that, June says she “lived” here as her daughter Nadine—aka Dee (above)—received many of our services.
June suggested a workshop for siblings at Holland Bloorview, which she then volunteered to help run. When Dee died at age 11, June had been supporting families in a new role with Family and Community Relations for eight months. June is retiring at the end of this month. I don’t want to write that because I don’t want to believe it’s true. I asked June to share some of what she’s learned over the years.

BLOOM: You had three kids and Dee was your youngest. Tell me about her.

June Chiu: She was a girl who just loved to be with people. She thrived on socializing, music and dancing.

BLOOM: How was she impacted by disability?

June Chiu: She couldn’t do any of those things (June laughs). She didn’t speak. She relied on other people to help her do all the things she would need to do as she grew up.

BLOOM: How did Dee change you as a person?

June Chiu: She really opened my eyes to how different we all are and yet how we can still live a full life, accepting each other for the things that we bring. The other thing I learned was patience. Oh my gosh, patience. Dee’s processing took longer, so you just had to wait. You just had to learn to wait. Life teaches us regularly to hurry, to pack everything in as much as possible. We still do that. But you have to take time in order to make things happen when you have a kid with special needs.

It would be easy to say we don’t have time, we can’t do that. But it’s important we do take time to do those everyday things other families do. Like sitting outside and letting the wind blow in our face. Or gasping for a breath when the wind is really blowing hard. Or sticking your toe in the cold water at the beach. We stuck Dee’s foot in the Atlantic Ocean and the face she made—it was such a shock to her system. But we wanted to do those little things we take so much for granted. To really stop, and do them.

BLOOM: What was your connection to Holland Bloorview?

June Chiu: Initially everyone thought I worked here because we came so often for services and camp. I also volunteered to do a sibling day and some parent information sessions. I approached the director of education services and said ‘I think we need some support here for our families.’ And the person said ‘that’s a great idea, how do we do it?’ I said ‘I’m willing to help’ and I met other parents who also got involved.

BLOOM: What was your thinking about siblings at the time?

June Chiu: As a parent with other children you’re always wondering what can we do to make sure all the children are okay. It’s not only about Dee, it’s about all my kids. We worked with two other parents and we were all thinking the same thing: ‘We know our other kids are okay, but there are times they don’t say things.’ Those sibling days really opened our eyes. I remember one young woman said ‘I know this is going to be my responsibility, but my parents don’t talk to me about it.’ She was 25 years old. That stayed in my brain for so long. Just realizing that no matter what age our children are, there are these hidden feelings. They have this unspoken sense and understanding and as parents we try to say ‘they’re fine’ but are they? Are they okay?

BLOOM: I think the reason many parents aren’t more forthcoming is because they are worried about what degree of responsibility the other children will have in the future. Because most people can’t honestly say that the other siblings won’t have some responsibility, can they?

June Chiu: No, they will have responsibility to varying degrees. You try to put supports in place, to tell them who will be around to help them make decisions. We need some people around who know us as a family and who will grow with us to know what we really want for our kids. We talk about guardianship. You have to know who you want to be your kids’ guardians. It’s the same idea when building a support circle. We were looking for a circle of people who could support us as a family and then be beside the kids as they grew and as they were making decisions and helping to support their sister. Before Dee died, we had started to talk to the kids about that. These are the people we trust and who will help make decisions so you won’t be doing it by yourself.

BLOOM: How would you describe the work you’ve done over the years?

June Chiu: It’s all basically the same—supporting families with information, moral support, encouragement, problem-solving and peer support. I’m a listening ear.

BLOOM: Did you consider not returning to work here after Dee died?

June Chiu: No, it was something I really wanted to do and I saw this huge need. I remember being there as a parent and there was nobody. I met parents from Dee’s nursery school and one woman ventured to create a resource book and that was the book that we parents looked to for all of the information and resources.

BLOOM: What are some of the key things you’ve learned?

June Chiu: I know families have this huge desire to support their kids. They want the best for them and to find something that will help them achieve quality of life. But at the beginning it’s usually a fix-it solution—to help my kid either walk or talk or whatever—those typical things parents want for their children. Then we get so disappointed our child is not achieving those milestones. I don’t know whether it was the doctor who jarred me from the very beginning and destroyed all my hopes.

When Dee was just two months she was in hospital for observation. The doctor said to me, right in front of the nursing station in the hallway: ‘Your child is going to be an infant for a very long time.’ Then she turned and walked away. We read about the ‘shattered glass,’ and that was my shattered glass. But you see even her saying that didn’t give me a picture of what that would be like for Dee.

I did see that she wasn’t reaching her milestones and that the prediction was probably going to be true. And in a way I hope that people could get this news more gently, not having everything destroyed for them. Because if I hadn’t had other people to talk to, and hear from, we wouldn’t have thought about the things we wanted for Dee.

When Dee was five I went to hear two speakers—Ann Turnbull and her son Jay from the United States. Her son’s needs weren’t profound like Dee’s. They talked about Jay living independently and how he could live independently. And I translated that and thought yeah, that could be done. That’s what I want for Dee. That she be able to live somewhere outside, beyond her parents, have a life with friends and family who really love her and have something productive and meaningful to do during the day. That was an ‘aha’ moment for me. I remember turning around after the presentation and saying to Dee’s occupational therapist: ‘That’s exactly what I want for Dee.’ And she looked at me and said ‘Really?’ And I could tell she was thinking ‘Have you gone bonkers woman?’

She didn’t realize that in my head I was already thinking about how that might happen. I was dreaming for Dee and it’s a dream every parent has for their child to live away from their parents. But I knew she’d need help to do that, she couldn’t do that on her own. I was such a dreamer! But I had ideas.

My sense of that developed as I started to listen and find out other stories. In some of my work I was fortunate enough to visit places where people were living in the community interdependently. I remember one situation where a woman needed support 24 hours a day and an agency helped her connect with a single mom with two children who needed housing. The children were in their teens. So this family moved in with this woman and they could do some of the things she needed and they became a family unit. But the agency gave them staffing supports as well.

BLOOM: Without having a lot of money it seems that it would be hard to come up with something innovative like that.

June Chiu: It's not going to happen for everybody. You have to find ways of finding solutions. Today, with the system being so difficult for families to find any support, they really have to start early thinking about what they want for their kids

The three main questions are ‘Where will my kids be living?;’ Who will be around them?;’ and What will they do during the day?' We can’t wait for the system, because the system is not there.

You have to dream. Dreams can also change as you move along, and dreams have incremental steps. You do little steps towards that dream. Dream big. That was a big dream we wanted for Dee, to live interdependently. I remember the look on that OT’s face. It said: ‘She’s really losing it.’ She was thinking how could that be possible? But you problem solve: what are the things you need to make that happen?

I have friends now who are supporting their adult children without disabilities. They’re supporting adult children who've finished school and are out looking for work. They’re paying for their rent. So those differences between supporting a child with disability and a typical child aren’t so different anymore. The gap is narrowing.

BLOOM: How could that help parents in their thinking about what they want for their child with disability?

June Chiu: Maybe we should broaden our thinking as to how we can do things, how we can set up things. We are very private people. We are so afraid to reach out because we don’t want to burden others: ‘This is my burden, I’m not going to burden my other children, my neighbours.’ Maybe it’s the feeling that I should be able to do this myself. Well, heavens no! We cannot do it by ourselves. There is no way. As that saying goes: ‘No man is an island.’

BLOOM: It’s funny, because just recently I approached two neighbours to ask for help. But it was really hard to do that. Because we want to look like we have everything under control. We don’t want people to see our vulnerability.

June Chiu: I remember I wanted Dee to have play dates. She never got an invitation. So I approached women I knew in the neighbourhood and parents of children in her Sunday School class. I didn’t want to have to go to each family individually and talk about this over and over again. I had to build up my nerves. So I practised in front of a mirror. I decided to host a parents’ coffee time. I invited them over, adding that I wanted to talk to them as a group, about our kids.

BLOOM: Did they come?

June Chiu: They came and I had to explain what I was hoping for. It was so scary. ‘I want my daughter to have friends, and to have parties to go to,’ I said. The kids were of the age where they still relied on their parents for play dates. ‘I need you to help me’ I said, and they said ‘Oh god, yes.’

They decided they would go home and talk to their kids about it. After that we had a kids’ day. We invited all their kids to a party and it was Dee’s party and the kids came. I had a woman who was an early childhood education specialist facilitate it and it was sort of an education and brainstorming and problem-solving thing. Each of the kids decided on one thing they would do with Dee. And they came up with fabulous ideas: ‘I’ll come over and swing with her on the swing;’ ‘I’m going to bring my turtles over.’ It was all kid stuff and their own thinking.

BLOOM: When I’m sitting here listening to you I can’t help feeling inadequate, that I’ve left so much so late (Louise starts to cry).

June Chiu: It’s really about getting over our fear of reaching out, and look, I’m crying too! We have to practise. Practise in front of the mirror or do it with a friend. And even if you cry in front of the person you’re asking, it’s okay. But we have to learn to let down our guard a little bit and not feel that we always have to be in control. Start reaching out to someone you really know well and who knows you, and who can maybe be your messenger.

We all feel inadequate. That’s why reaching out is so important. I remember one day I lost it in Dee’s nursery school and the coordinator said ‘You finally did it. You’re finally crying.’ Because we always want to be strong. But we all feel inadequate because we feel that we should be doing better. That’s our nature, we’re such high achievers to start with. That’s our downfall.

So give yourself permission to fail, to fall, to cry, and to do it again.

June Chiu (right), with fellow Family Support Specialist Lorraine Thomas, in the Family Resource Centre at Holland Bloorview.

 

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Are we really from a different planet?

Editor's note: No, this piece is not related to my Facebook post about my "bad day" today. It happened a few days ago. But I couldn't get it out of my mind. And I thought you might find it interesting. Louise

I bought an instrument for my son a couple of years ago but had trouble finding a teacher and it remained largely in the box.

My son took it out the other day for a little jam session and I thought I'd look again for an instructor.

I got some great recommendations on Facebook. Then I went online and found what looked like a really cool organization that offered lessons on this instrument to all age levels, privately, in school, in groups and even as part of corporate team-building. They hold all kinds of regular jam sessions open to anyone at venues that sound really fun. Even I was getting psyched at the idea of showing up one night. This is what I would call a high-profile group of musicians. In their signature, they use this tagline: "democratizing the arts, one strum at a time."

So I filled out their query form. See below.

Hi there -- Can you recommend a teacher who may have had experience working with children or adults with disabilities? I would like to find someone to teach my son and I. Thanks.

-------------------------

I really wish I could be of help, but I don't know anyone who might be a fit for you and your son. Best of luck with your search.

-------------------------

Hi -- thanks for your message. It doesn't necessarily need to be someone who has worked with someone with a disability. Just someone willing to try something new? Thanks.

-----------------------------

Silence.

If this group is unable to interest an instructor in "giving it a whirl," or to suggest someone in the industry who might be able to "stretch" themselves just a tad, who would? I'm a realistic person. I know sometimes things work and sometimes they don't. All I was asking for was a chance. A paid chance. So much for democracy. 

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Focused on access: Photographer launches new app

By Louise Kinross

Maayan Ziv found her life passion by accident.

After landing in New York on a high school trip, her power wheelchair broke down.

She couldn’t keep up with the jam-packed sightseeing itinerary of her peers, so she borrowed an old wheelchair to explore the area around her hotel.

Armed with a tourist camera “I started taking pictures of people and what I was seeing and I got so excited about documenting what I was looking at through this medium that I got hooked.”

Maayan launched her professional photography business at age 19 and is about to graduate with a master’s in digital media from Ryerson University. Maayan is a fashion, portrait and street photographer.

“When I started as a photographer I was nervous about letting people know I was using a wheelchair,” she recalls. “I kept who I was separate from my work. It sounds crazy because the more that I started recognizing that my disability and the perspective of sitting on a wheelchair was a large part of how I was taking images, the more I saw that it made me different from other photographers, and that was a positive thing.”

In addition to the physical perspective of sitting, “which gives me a unique angle, and the way I use my arms, which is different, it’s also a mindset,” Maayan says. “Since I was a very young age I learned to look at things in a different way in order to do what I wanted. For example, I looked at the ground to make sure there weren’t cracks that I would get stuck in. That kind of curiosity became engraved in the way that I see the world and I think that comes through in my images.”

Last week Maayan launched a new app as part of her master’s program called AccessNow. “It’s a crowdsourced map that anyone can join and add to. We categorize the accessibility of places in Toronto and beyond based on four levels.” For example, green means “totally accessible” while orange means “you can’t get inside, but there’s an awesome patio you can use in the summer.”

Maayan says that the map will visually mark the many places in Ontario that are supposed to be barrier-free by 2025, but aren’t. “It will allow us to see what needs work and where we need to go to create better access.” People from anywhere in the world can add to it.

Maayan, who has spinal muscular atrophy, is one of the first people to receive direct funding under a new $5 million program through the Ontario Ministry of Health and Long-Term Care that will enable her to hire her own attendants. “These are people who help me with all of my personal needs and help me around the house and may escort me to appointments,” she says.

In the past, Maayan relied on services from a Community Care Access Centre. But she couldn’t get the flexibility in hours she needed to maintain her busy schedule, so her family often had to help out. “Because I’m a photographer I’m never in the same place at the same time. I move a lot and travel for work so it was difficult to schedule care with CCAC that way.”

In the next two weeks, the 25-year-old is moving into a renovated condo of her own, made possible by “being able to manage my own care,” Maayan says. “I’m very comfortable directing and working with others and direct funding is a huge improvement in my lifestyle. It’s obviously a bit of an adjustment to go from relying on an agency to do scheduling and payroll to me taking that on myself, but once you get the gist of it, it’s pretty simple.”

Maayan encourages parents to “provide space for their child to explore and define what they can do, rather than telling their kids what they can or can’t do. Let your child figure it out and be there throughout that process. For me, as a child, I never thought of myself as someone who was disabled. I was able to go to regular school and do regular things and I think my parents had a lot to do with helping me have that confidence.”

Check out this video where Maayan explains why she was so motivated to launch AccessNow.

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Our very own Nydia Langill lights Parapan Am torch

Long-time Holland Bloorview client and elite swimmer Nydia Langill lit the Parapan Am Games torch last night in Mississauga. I met Nydia and her mom Claudia (right, with blue cap) at Holland Bloorview's Play and Learn nursery school about 19 years ago. I can't wait to see Nydia's event on August 13. Go Nydia Go!

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The Hungarian mom who started the play revolution

This is the Hungarian mom who was frustrated because her child with disability couldn't play with his siblings and peers at the playground. So, with friends and family, she designed equipment to accommodate everyone, including children with severe disabilities lying down.

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Hungarian seesaw fits kids of all abilities

By Louise Kinross

Earlier this year I received a message from a parent in Hungary: “We are a group of parents from Hungary who raise special-needs children and who believe we’ve invented something extraordinary for them. In our MagikMe project we create playground equipment that disabled and non-disabled children can use together.”

Six parents co-founded the company MagikMe and I interviewed director Krisztina Emrich to learn more.

BLOOM: Can you tell me about your group of parents and their children?

Krisztina Emrich: Four of our parents are raising disabled children. The children’s names are David, Aron and Jancsi, and they are between the ages four and six. They have epilepsy, cerebral palsy and other disabilities related to prematurity.

BLOOM: Where in Hungary are you based?

Krisztina Emrich: Most of the founders work in Budapest, from home and on site. MagikMe is a commercial company established in the United Kingdom, which is where I live.

BLOOM: Why is there a need for inclusive play equipment?

Krisztina Emrich: My friends couldn’t find playground equipment in Hungary which their disabled children could use safely, and together with their non-disabled siblings, friends and peers. Since my friends have non-disabled kids, too, they are also frustrated with what to do. Eventually families with disabled children stay home and become disconnected and isolated from the local community. Since the playground is an important social place for kids, inclusive playgrounds can facilitate the socialization of able-bodied and disabled children in a very favourable way—towards empathy and cooperation. In [these] playgrounds, kids get used to seeing different kids with various issues [and]… they will play together because that's what children like to do.

BLOOM: What is the first piece of equipment you've made for children with and without disabilities?

Krisztina Emrich: Our first prototype is the Pillango, which means butterfly. It’s a special seesaw with four-seats on two springs which moves gently in all directions. Two seats have safety bars and allow the kids to lie down so that disabled children can use it too. In the middle there is a little maze with a ball and with the movement of the Pillango the kids can move the ball into the middle of the maze. It was manufactured last month and is now being tested for safety (see photo above). It costs just over $2,000 Canadian.

BLOOM: Where will your equipment be sold?

Krisztina Emrich: Presently we are building relationship with local councils in Hungary and abroad. Our main market is the public sector: local councils and health and education institutions. But also private health and education groups, property developers and playground projects. So far five local councils in Budapest have indicated interest in installing our product. A private kindergarten in Berlin is interested too.

BLOOM: Are there other companies in Hungary producing accessible equipment like this? 

Krisztina Emrich: Multiplayer equipment that is accessible for disabled children without a wheelchair is unique, not only in Hungary, but anywhere in the world. The only competing equipment is the nest swing, but it's not considered safe for children with severe disabilities. Our products are designed with health professionals and parents.

Follow MagikMe on their blog.

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At this camp 'disability didn't matter'

By Jessica Geboers

“Ooh / There is a camp I know/ and it lies on the Rideau / and they call it Merrywood / and you know, they really should.”

These are the opening lines to the Merrywood Song, the anthem of my favourite place on earth­­: Merrywood Easter Seals Camp in Perth, Ontario, for children and youth with disabilities. However, Merrywood was always much more than just a summer camp to me. From the first five days I spend there in the summer of 1997—my first time alone after two summers of family camp at the former Northwood with my parents—this was a place of accessibly, inclusion, friendship and fun. And as cheesy as it may sound, the friends and memories made there really do last a lifetime.

I’m still in touch with Erin, the counsellor who met me at my car on my first day at Merrywood. Not only did she look out for me that session and every session we’ve spent there since, but we’ve stayed in touch over the years through letters and Christmas cards. Nowadays, Facebook helps keep us up to date on the happenings in each other’s lives.

I think it was the summer of 2002 when I didn’t get into Merrywood but instead was offered a place at Camp Lakewood. I was in utter despair over not getting into Merrywood—my 12-year-old life was over as I knew it. But I was happy to be going to camp somewhere. And, as it turned out, this was one of the best things to ever go wrong in my life.

At Lakewood, I met my best friends in the world. Not long after arriving, I met Hanako. She was in the bed next to mine and our first interaction involved her helping me to disentangle my walker from my wheelchair. I’m pretty sure she thought I was quite daft for getting into such a predicament, but it was nice of her to help.

The previous year, Merrywood had acquired a collection of untippable and unsinkable sailboats that could be maneuvered easily from a comfortable seat with a joy stick and single rope operating the sail. Sailing quickly became my favourite activity, pushing swimming to second place. I love the freedom and exhilarating speed when I catch the wind just right.

Lakewood also had these sailboats, and pretty good wind conditions as well. When Hanako and I arrived at the beach for sailing on the second day of camp, it was quickly established that, due to short staffing, we would be sent in a boat together as we were both experienced­ sailors. Darren, an attractive Irish sailing instructor, whom I immediately had a huge crush on to the point of being speechless, had trained Hanako the summer before.

So off we went. The thing about spending two hours in a boat, with little else to do but sail and talk, is that you either come back friends or foes. Luckily for us, we discovered that we had a fair bit in common: in addition to a love for sailing, we had similar tastes in music and books, came from Dutch families and were the oldest of three children. We also had a similar form of cerebral palsy so shared a life view in this respect. We returned with the beginnings of a beautiful friendship. From that point on, Hanako and I did everything together, sailing as often as we could. We were even so bold as to ask Darren to rig an additional boat for us when there weren’t enough spaces.

“Hang” was a two-hour period of down-time we spent in or around the cabins every afternoon. Hanako and I would sit side-by-side on my bed or in our wheelchairs, as we quickly discovered that there was just enough space between our two beds to fit both chairs beside each other. We listened to my countless burnt CDs while singing along shamelessly.

Lakewood was not a bad place. The people and the sailing were great. The cabins had yet to be updated but the six, small, wooden buildings fostered a sense of community and tradition. The only downside was that dead fish from Lake Erie often washed up on the beach, giving the entire camp an unfortunate smell.

Despite my love for Merrywood, I followed Hanako back to Lakewood the next summer. She’d never been to another Easter Seals Camp and, like me, dislikes change. Hating to waste a day, she convinced her father to drop her off at 9 a.m. on arrival day and, after some badgering from me, my family dropped me off soon after.

If I remember correctly, after the required rounds of handing in the money our parents had given us to purchase a new Easter Seals T-shirt, checking in with nurses and assuring the waterfront staff that we were still crazy about sailing, we spent the majority of the morning messing around in arts and crafts while meeting new staff and catching up with those returning.

It was later that afternoon while lounging on my bed with Hanako that we met Katie, who would quickly become our third Musketeer and another of my best friends. When she came in I could tell right away that Katie was another highly independent camper like Hanako and I. Her cerebral palsy wasn’t even noticeable to me at first.

It was quite out of character for me then, and still is now, to make the first move to initiate a friendship, but Katie seemed cool and I felt for her as she nervously sat down next to another cabin mate who was much more severely disabled. She looked uncomfortable so I took a chance and said hi, striking up a conversation.

I later found out that this was Katie’s first time at camp, although her twin brother Kasey had come the year before. She was new to camp life and to being around kids with such a wide spectrum of disabilities. She adjusted quickly though, asking Hanako and I questions whenever coming across something she wasn't familiar with.

After Katie and I hit it off, Hanako asked if I was ditching her for Katie. I assured her that I was doing no such thing; I simply thought she could use a friend and the three of us could hang out together, which we did.

We did everything together, except sailing which Katie found boring unless it involved a water war against her brother. Three can be an awkward number (and I won’t say there weren’t disputes over the years) but we usually sorted it out. Not big on sports in general, we often found ourselves together at the pool diving for rings (although Katie floats a little too well for such activities) having sparkle and paint fights in arts and crafts or doing something (often involving food) in Life Skills.

Hanako, Katie and I were an odd trio but were drawn together by our shared independence and friendship. I saw myself as the glue of our group. In addition to the things I have in common with Hanako, Katie appeals to a lighter and more girlie side of my personality. At 14, and even now to a point, Hanako never cared much about clothes, make-up or hair. On the flipside, Katie, to our slight disappointment, has never had much interest in picking up a Harry Potter book or watching A Walk to Remember on repeat.

Lakewood was closed after that summer and after some fantastic times there I was sad to see it go.

Once home, Katie and I began speaking on the phone almost daily (a habit that would continue until we went to college and upgraded to Skype) and Hanako invited me to stay with her for a couple of weeks in Kitchener-Waterloo. From then on I would visit Hanako after camp each summer and almost every school holiday during the year. Our parents used to take turns driving me back and forth between Bowmanville and Kitchener-Waterloo and when I look back, those two-hour drives were some of my favourite times, often spent singing aloud to our favourite bands (like Switchfoot, Relient K and Coldplay). Although I appreciate the independence it provides, the train ride alone is just not the same.

Off to Merrywood we went the next summer where I proudly introduced them to my favourite place and everyone I knew. Hanako and Katie were happy to admit that this was a nicer place with new, air-conditioned cabin buildings and water on three sides (free from the stench of dead fish). We also enjoyed some additional activities: Hanako and I went white water rafting on the Ottawa River, while the three of us enjoyed beach day and camping in a tent overnight together (Katie, who wasn’t keen on boats at the time, braved the canoes like a champ to partake in these two activities with us).

This continued for the rest of our years at camp, the three of us usually only separating when Hanako and I went sailing. Hanako and I took the summer of 2009 off because we knew we might want to work at Merrywood and were required to take at least one year away to create a bit of separation between camper and staff.

I worked at Merrywood as a cabin counsellor in the summer 2010. It was my first real job and a lot harder than I expected. I was always tired, but it was still the best job in the world. Hanako came for a session to work as a peer support counsellor. Essentially she was an ex-camper hired to act as a role model for campers who might wonder what life is like with a disability as they get older. It was so much fun to be there together again.

Then life and school got in the way, so I had to take four years off from camp.

I missed it very much and was ecstatic about going back this summer to work for a session as a peer support. It was easier this time as I’m older and know better what to expect. Although I can’t help much with the more physical aspects of the job, such as lifting, I love hanging out with the campers and helping them to enjoy Merrywood as I did, while encouraging them, as I have learned from experience, to be the best they can be.

It’s been suggested to me recently that Easter Seals camp does more harm than good by fostering the idea that those with disabilities should be segregated from their able-bodied peers. I however, disagree. As I’ve written before, I think that mingling between abled and disabled people is important for acceptance and understanding between both parties. But that doesn’t mean that it’s not nice, let alone helpful, for children and youth to spend time with others with shared life experiences—even if it’s only for 10 days a year­­—in a place so accessible it could be argued that disability doesn’t matter.

Camp was the only place that I can say this was undoubtedly true.

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