When you wish

Yesterday a colleague mentioned that she had seen my son in the distance at a park.

"He touched my heart merely through my quiet observation of him: he was plucking dandelions (ones that had matured into the sort that you can blow on them and make the seeds scatter). He was blowing and making his wishes into the passing wind! I hope and trust they are all coming true in his own time..."

Read More

We learned more about 'inclusion' schooling at home

By Lianna Koerner

When I think back to the early days of November 2013, I see my son and myself as strangers.

He is an eight-year-old boy sobbing as he starts his morning routine. I am a confused, harried woman trying to comfort him. He is a boy running away from the school bus at the end of the driveway. I am the woman making apologies to the driver and trying to hide my frustration. Then the boy and woman walk together to school, hand in hand, the boy wearing his backpack. Both sets of shoulders are braced, defensively, for another day of school.

My husband and I believe in full educational inclusion. We sent our son Gabriel to our community school until Grade 3.

But it just didn’t work for Gabriel.

During over four years in the system, the school focused on our son’s “behavioural challenges” and “deficits.” Our days were strung together by negative notes in his daily communication booklet and bookmarked by IEP meetings. The words “reward” and “consequence” would become as offensive as the occasional curse word our son flung about at school.

By Grade 3, our son was emotionally falling apart. In terms of his learning, basic addition and subtraction skills were not on his radar. He didn’t care to participate with peers. French class was a complete mess. One behaviour report after another seeped into every area of our lives. By this time, I wondered if our ideas about inclusion were all wrong.

Our dream of inclusion initially held great promise. By the time Gabriel was three, it was clear that his love for Sandra Boynton and Eric Carle and Rachel Coleman from Signing Time had accelerated his reading skills. He was picking out his big words (sight words hand printed from his favourite books) at a rapid pace. Then he had a successful year at preschool. Everything was on track for him to attend his neighbourhood school. We envisioned a circle of friends surrounding him right from junior kindergarten to high school graduation.

What happened? Were our ideas about inclusion too absolute? Did we not make room for all the human factors in our beliefs? When it comes down to it, inclusion is all about humanity—the good and the bad of it. Somehow, I held onto a “feel good story” about the boy with Down syndrome who has the best school experience ever. I did not want to accept that inclusion at this particular school was not working for Gabriel.

Our son’s despair was enough to challenge us and change our thinking.

The morning we decided to homeschool Gabriel was an opportunity to see him as a whole person again. We could let go of the caricature of a boy created by the negative words the school had used to describe him, in person and on paper.

My son is 10 years old now. He’s the person he’s supposed to be. No one is constricting him with their own ideas of what “special needs” means. He doesn’t label himself, and our loved ones and friends in our social circle respect him. See him. Include him.

Being new to the world of homeschooling was similar to my experience being a new mom to a child with special needs. The homeschool world is full of choices and opportunities that offer support and inspire and motivate my son to experience and enjoy his everyday life.

Every August, I create a curriculum based on Gabriel’s needs. And he determines the pace. We school from early September to the end of June. The Ontario Ministry of Education website offers curriculum expectations as well as policy and resource information. I am a member of the Ontario Federation of Teaching Parents—a wonderful organization to connect with other homeschooling parents and a valuable resource. Through Facebook, I have joined two groups of parents who homeschool their children with special needs. The online accessibility to teaching materials is wonderful and plenty.

And in terms of inclusion? Gabriel is more included now than he was at school!

Gabriel is confident in who he is. He chats easily with our neighbours while dog walking, he conspires with his friends about video-making ideas (he says he wants to be a film maker), he participates in a homeschool Kung Fu class, and he has had a variety of sleepovers. His friends include children with and without special needs, both boys and girls, aged from four years old to 13 years.

Gabriel is also in a program for learners with Down syndrome called Dragonfly. Using dance and creative movement to enhance working memory, he learns about numbers. This program is as close as we have to a “going to school” experience for Gabriel. I drop him off for a half day, once per week and I wait for him to return.

His behaviours can still be difficult, but I can’t help wondering if he’s trying to re-create his school environment—searching for the comfort of the inevitable correction. He refuses prizes of any sort, whether it be from the dentist, doctor or a fun game. He’s not keen on rewards, perhaps a carryover from his school days.

Gabriel is doing well in the program and as a homeschooling child, and as long as he’s happy and moving forward as his own person, then every challenge is worth it. 

Read More

When it comes to disability, who and what needs to change?

By Louise Kinross

When my son was young I searched for interventions that would "minimize" his disabilities.

I'm embarrassed to write that now, knowing how important feeling accepted "as you are" is to a person's sense of identity. 

I was reminded of this today because I read a study that looked at the images and words used to describe disability and "normality" in marketing rehab technologies.

The 2014 study, which included two Bloorview Research Institute scientists, looked at promotional copy for a hearing aid and robotic gait training used to promote a more typical walking pattern. 

The researchers note that marketing material for rehab technology typically "focuses on normalization, [on] correcting or fixing what is perceived as 'deviant' or 'abnormal'" about a body or behaviour. 

In looking at the hearing aid and gait training brochures and videos they considered how children, parents and professionals were represented; what was promised; and who had authority in terms of the credibility of the claims.

They found that language focused on the child's impairment. For example, "most wheelchair-bound patients hope for a chance to regain their ability to walk." One video for gait training featured a child getting out of bed, walking and riding a bike with a friend independently. How would a child feel if he or she did the training but didn't achieve these results?

"These images...reproduce discourses of what constitutes a normal, happy life and set a particular standard for how a disabled child might successfully live his or her childhood...These ideas about the right way to live, move and look are likely internalized and other ways of being are constituted as a failure to conform."

The researchers found that the materials promised efficiency in the quest to "fix" disability, including making work easier for therapists and professionals! One of the most powerful messages was that "overcoming impairment was ...the right thing to do, not only from a professional or parent perspective, but from the child's perspective as well."

The materials suggested that children who use the technologies will be more successful, better included and have the best opportunity to "live a normal life."

In the promotional copy "normal is juxtaposed with abnormal, and the messages suggest that normal is good and abnormal is bad." 

In one instance a therapist says that "a big smile lights up their faces" when children see themselves upright in a typical gait in the mirror. So how, the researchers asked, are they supposed to feel when they walk away with their own unique gait, or wheel away, from the technology?

The advertising includes endorsements from therapists and other professionals, reinforcing "power relations of professional authority" which may influence families' choices. 

The researchers note that rehabilitation has historically focused on "fixing" the individual and that parents' and professionals' perspectives on disability "strongly influence how disabled children internalize what disability means to them."

They question what messages about ability and disability are reinforced in children's rehab settings. "The question we must ask ourselves is whether we unintentionally disable people by our practices and our language, and if so, how can we move beyond this?"

Back to my earlier recollection of wanting to "minimize" my son's disabilities. I don't think I would take kindly to someone telling me to "minimize" something that is a fundamental part of who I am: like how I squeal when excited to see someone, or the fact that I have no hair because an autoimmune condition prevents it from growing. 

Think about the ways in which people have historically been encouraged to "downplay" their gender, race, sexuality or any other human variation? Has this ever made anyone feel good about themselves?

The researchers aren't against technology. But they want to know how we can make it part of a value system and dialogue that values and respects diverse bodies and abilities, instead of setting up one as "normal" and "good," and the other as "abnormal" and lacking.

Read More

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

Read More

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.

Read More

'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.

Read More

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.

Read More