Tuesday, December 27, 2011

'It's not what you see. But how you see it'

This is a condensed version of an interview that appears in the January issue of BLOOM magazine. I don't think I've spoken to anyone who's made me stop and think the way Dr. BJ Miller does. Louise

Dr. BJ Miller was a successful Princeton sophomore when he and his buddies decided, on a lark, to climb atop a parked commuter train; the lark turned dark when the train's electric voltage arced to his metal wristwatch, resulting in the loss of his legs below the knees and part of his left arm. As a triple amputee he went on to graduate and become a palliative-care doctor. He’s now executive director of the Zen Hospice Project in San Francisco. "I learned so much, particularly about perspective,” he says. “It's not what you see but how you see it."

BLOOM: It sounds like you were someone who had everything – at least on the outside – before your accident. How did becoming an amputee change you?

Dr. BJ Miller: I was well aware that I was very fortunate in many ways when I was younger and while that was good, it was also tough. Whenever I worked hard or was proud of something, it was discounted. I couldn’t take any credit for any of my achievements – or my pain. It was a bit of a funny relief when I became an amputee because I finally had an external source of suffering. Finally people stopped treating me like the world had just been handed to me. It gave me access to humanity in a different way and that helped me. It didn’t feel this way every minute, but I worked towards it feeling like a source of good fortune. Of course it was also a source of a great deal of pain and anxiety too. I’ve had the full gamut of emotions but on balance, over the years, more good than bad has come from it.

BLOOM: What was the greatest challenge for you?

Dr. BJ Miller: In a nutshell, how to see things differently. By pulling me out of my anything-approaching ‘normal’ frame of reference it really helped me upend that endless cycle we humans engage in of constantly comparing ourselves with those around us. Am I smart enough, rich enough, skinny enough? Compared to what? That’s the question I got to open up. I was given a way to let myself off that hook and be my own frame of reference. That was extremely liberating for me and it gave me a way into self-actualization that was wonderful.

It’s still a great challenge to keep it up – to still be my own boss, to be my own gauge. As much as that’s the greatest gift, it remains the greatest challenge. A critical subtext for disability and for my palliative work comes to this issue of following one’s own gut and reconciling what the external world wants and thinks and needs from you with being true to yourself. There isn’t a pat answer to that.

When I talk to school kids they’ll say “Don’t you miss having two hands?” and I’ll invariably say “Yea, I do, but don’t you miss having three hands?” Because for me personally it’s as ludicrous to go around thinking about having two hands as it is for them to think about having three. “I don’t sit around missing them anymore than you sit around missing three,” I’ll say. This frame-of-reference issue is a powerful thing.

BLOOM: How hard was it to relearn how to do things as an amputee?

Dr. BJ Miller: It took five years of hard work before I felt truly in my body again and coordinated in a new way. I think the hardest thing remains the arm. Having two hands is way easier than one, and the hands are so important. Sure, I miss my feet, but they’re just like a platform. They’re easy to duplicate. I can get around on my prosthetic legs.

BLOOM: What did you learn about having a visible difference in our culture?

Dr. BJ Miller: I’ve learned a lot because I was suddenly snapped into being part of a minority, of being ‘the other.’ All of a sudden I embodied something that most people fear. I was very aware of this sort of repulsion that people felt. It was hard to see the terror on kids’ faces, or parents pulling their kids away from me. Or if I surprised someone, and I was wearing shorts, and they were horrified. Sometimes it took the guise of pity, which I knew from my mom was the enemy. Sometimes the pity felt nice because old women would come up and give me $20 – even when I was in medical school! It definitely was hard and I had to really concentrate on sticking my chin out when I walked out of my bedroom to face the day.

The fascinating part was that about two years after the accident I noticed people’s reactions got a little better. And after five years I noticed a big difference. I must have carried myself differently. At first, I’d drive like a mad man and get pulled over by the cops and they’d take one look at me and let me go. Or if I was flying, I’d be bumped up to first class every time and they’d sneak bottles of wine into my bag. But then that just stopped. Did I reach a new level that I didn’t trip up these responses in others or had society evolved?

BLOOM: How did you cope in the early days?

Dr. BJ Miller: I was full of pain and fear. But I can’t tell you how important it was having grown up with a disabled mother. For much of my mother’s life she used an electric wheelchair and being in the world with her, I vicariously learned a ton of the things we’re talking about. As a child I was sensitive and a little worried – ‘Gosh, I’m lucky in all these ways and could I even handle it if I had a disability?’

So I was coming from a different place when I became an amputee than most people. I loved my mother so much and was aware of the way the world treated her – and yet I didn’t want to collapse into hating life. These issues had been rumbling around in my head for a while. I didn’t wake up on day one and see my situation as a great challenge. But pretty soon I was aware that it was that – a great challenge. I knew that and I had to live it.

BLOOM: Do you have a personal philosophy that helps you see things with perspective?

Dr. BJ Miller: I’ve only read The Serenity Prayer a couple of times but I’d have to say that it registers with me. Teasing out what you can control from what you can’t control – I can’t think of a better skill to acquire as a human being than that. Because whether or not you qualify as disabled, life is full of pain and difficulty. Even if you have all the perfect circumstances, at some point Mother Nature will insist upon certain things from you, like your own death. You can’t change the things you’re looking at in so many ways, but if you’re going to use your energy, put it into how you see.

BLOOM: Why did you become a palliative-care specialist?

BJ Miller: Because all of the things I’ve learned to get through my day seem to have broader relevance for people dealing with various themes of suffering. Suffering is a unifying human bond and it comes in many stripes and colours. And even if you have a perfect life you still have to say goodbye to it at some point. I love finding and working from the common denominator – and suffering and mortality are the most thorough.

After med school I thought I would go into rehab medicine but when I did a rotation in that I was turned off. It seemed to be a very mechanical field, while a lot of what we’re talking about has to do with the transformational powers of coping with disability – that there’s this raw material for transformation and growth and interest.

The goal in rehab seemed to be to get back to where you were before the injury and that to me was fundamentally flawed. Generally it’s not possible, but more importantly, why undermine and cut yourself off from all the beautiful stuff that comes your way when you embrace differences? I’m sure there’s a balance to be struck with therapy, but overall, celebrating differences – especially the ones you can’t change – is a better way through, if you ask me.

Photo above by Brant Ward ran with a feature about BJ in the San Francisco Chronicle.

Thursday, December 15, 2011

Happy holidays!

Dear readers:

I am off to England tomorrow to a small town not far from where this robin had its picture taken.

I had booked this ticket to take care of my uncle in hospital there, but sadly he died last week. So now I will be staying at his home in the beautiful Suffolk countryside. The robin is appropriate because my uncle always sent us Christmas cards adorned with robins.

Something I've noticed recently on the BLOOM blog: our page counts go up when we post videos (so you like watching them), but the comments go down. Thoughts? Is there a reason people don't like commenting on videos?

I won't have access to blogger until after Christmas. So I wish you all very happy holidays and am passing along a few links. Louise xo

Letting Ruth go: My daughter's wheelchair was her legs, her computer her voice

Asperger's syndrome inspires homeless woman's comic book strip

Official trailer: Rollin' with Zach

A drug that wakes the near dead

Tuesday, December 13, 2011

Focus on deficits masks a child's beauty

A highlight of the ethics conference at Montreal Children's Hospital was a parent panel. Nathalie Bouchard, above, was one of those parents. Here she talks about how a medical focus on deficits harms the relationship between parent and child. Nathalie was interviewed in a playroom at the hospital. I'm happy to report that shortly after this interview a tiny dog was brought in for 'pet therapy' and there were no more tears! Thank you Nathalie!

Still kickin' at Kumon

Monday, December 12, 2011

Advocacy in an unfamiliar culture

Getting your child with disabilities services can be a challenge. But imagine going to bat for your child in a language you don't understand? And what if you didn't feel comfortable talking openly about your child's disability? These are just some of the barriers facing parents in the Canadian Somali community says Shukri Farah (above) in another BLOOM clip.

Thursday, December 8, 2011

This and that

Over 70 per cent of 1,148 respondents to an online survey by the UK's Contact a Family said they've experienced mental-health problems such as anxiety, depression and breakdown as a result of the isolation they experience raising a child with a disability. According to Forgotten Families, British parents report "a lack of social interaction due to difficulties working and not having the time or money to do family activities others take for granted; a fear of how people will react when they go out with their child; and a feeling of being alone, even when surrounded by people, because no one else shares their experience."

I heard four-time Canadian Olympian rower Silken Laumann interviewed on CBC about raising a daughter with autism a couple of weeks ago. Silken lives with her partner GoodLife founder and CEO David Patchell-Evans (known as Patch). They each have two children, and Patch's daughter Kilee, 15, has severe autism and requires 24-hour care. This is a beautiful blog Silken wrote about the impact of attending a dance with Kilee and other youth with disabilities:

Just start dancing
These teens and adults live everyday in a world where they don’t “fit in” not because of anything that they are doing, but because of our own discomfort with looking different, acting different, speaking too loudly. These young people have the real gift, the gift of expressing themselves authentically, without a self-censoring process that sifts out so much of the joy. It is we who have the disability, the inability to express ourselves authentically in our life, the attachment to fitting in that is so near and deep inside us that we rarely can let go of it.

If your child has seizures and developmental disability, don't miss this webinar Dec. 13 moderated by parent and BLOOM contributor Elizabeth Aquino and hosted by the National Center for Project Access of the Epilepsy Foundation.

Webinar: Communicating with Your Developmentally Disabled Child During Adolescence and Puberty

Costs, quality-of-life ratings put complex kids' care at risk

Pressure to contain health costs over the next decade will put the care of a small group of children with complex medical needs and severe disabilities at risk, says Dr. Chris Feudtner, pediatrician and director of the department of medical ethics at the Children’s Hospital of Philadelphia.

“About 20 per cent of the pediatric population generates about 80 per cent of our health-care bill,” said Dr. Feudtner at a Grand Rounds on ethics in the care of children with disabilities at Montreal Children’s Hospital last week.

“The rallying cry is that we need to cut down on the use of what are called marginal therapies – on drugs, therapies and procedures that cost a tremendous amount of money but offer little benefit. It’s a short manoeuvre from that mindset to take certain people with certain conditions and marginalize them.”

Dr. Feudtner showed a photo of one of his patients – a baby who uses a ventilator – and said: “We don’t want to end up having a bureaucrat 1,000 miles away saying ‘this is marginal medicine and we need to cut it out.’”

In analyzing the costs and benefits of treatments, economists measure quality-of-life years gained or lost as a result, he said. These analyses are typically based on models that assume low quality of life for people with chronic illness and disability.

Studies of self-reported satisfaction with life in people with disabilities, however, show a different picture.

A large European study of children with cerebral palsy found they rated their quality of life on par with their peers.

Research shows that patients rate their happiness and satisfaction higher than their families do, while their families rate it higher than doctors and nurses do. And the longer a person has a disability, the happier they are with their life. One to two years after a spinal-cord injury, people tend to rate their life as good as, or better, than before.

“Who judges quality of life in people with disabilities?” Dr. Feudtner asked. Should it be a panel of doctors, a random sample of the population who haven’t experienced disability or a group of patients or parents who understand firsthand what it means to live with the condition?

“Our current analyses of quality of life don’t account for the amazing capacity of people to adapt and grow, to handle difficulty, and to say ‘my life is good,’ without changing the difficulty.”

That’s because ratings are determined by able-bodied people who try to predict the impact of disability on everyday life.

Current analyses of quality of life don’t factor in the cost or benefit of a drug or treatment on people connected to the patient, such as parents, siblings and grandparents.

“Is medicine a one-on-one proposition or do we look at it from a societal perspective that includes people connected to the patient?” Dr. Feudtner asked. “If we cut respite care and a parent has to stay at home, do we count their lost wages as costs? If my child’s quality of life growing up makes me happier, do we count that? What are the ancillary benefits of having a child do better? There are instruments to measure family stress and depression. If a family receives social services, does their level of anxiety and depression drop?

“Right now a huge amount of the costs of raising children with severe disabilities is being born by the families.”

In a study of children receiving palliative care, Dr. Feudtner found nearly half were facing substantial financial strain. Those who reported the direst finances had children whose health had declined most steeply.

“It’s hard to figure out how to capture these costs,” he said. “But to disregard them means that you really aren’t operating from a societal perspective.”

With unsustainable health-care costs projected over the next decade, “ethical pronouncements about ‘it’s the right thing to do for children’ will not have the same sway they had in the past,” Dr. Feudtner said. “We have to marry the ability to speak to deep ethical values and go head to head with accountants.”

Joey, above, is a child with complex medical needs.

Monday, December 5, 2011

The demonization of the disabled

There is a climate of hostility towards people for whom life is already difficult and it is being fostered by politicians and journalists, writes Observer columnist Ian Birrell.

The demonization of the disabled is a chilling sign of the times

Swimming lessons

In the 1970s there were no special swimming lessons for kids with disabilities in Edmonton. My brother loved the water, so my parents registered him for swimming lessons. The staff looked at him and said that the teacher wouldn't have him in the class unless a family member was there to help Leo. My parents looked at me. I knew they wanted me to say I would sign up for the same class, and be Leo's helper. I told them what they wanted to hear. This story is about why I never learned to swim.

Swimming lessons
By Sophia Isako Wong

I am afraid of the water. Clutching the side of the pool, I edge my way along, hoping the teacher won't notice me. All the other kids are in the middle of the pool; I am the only one who can't keep up.

"Come on, Sophia! Let go of the wall and kick your legs!"

I transfer one hand to the flutterboard, a thin slice of blue Styrofoam that doesn't support my weight sufficiently.

"You can do it! Both hands on the flutterboard, and kick your legs straight out!"

I take a deep breath and start kicking my legs. Maybe if I can get my legs going first, I'll be able to let go of the wall.


Without looking, I know what has happened. My brother Leo has done it again: a big cannonball into the pool, gleefully creating a big noise and splashing all our classmates. The teacher calls my name. I wave my arm to show I've heard her.

"I'm coming." I pull myself out of the pool, drop the flutterboard, and make my way to my brother. Eyes shining, he watches me approach him with a huge smile on his face.

"Hey Sophie, did you see me? I made a big splash! That was fun!"

"I know, Leo. I saw you, and I heard you. Did the teacher ask you to do that?"

"No, it was my idea! I made a big splash!"

"Leo. Look at me. This is not play time. This is swimming-lesson time. Can you listen to the teacher, please? The other kids don't like it when you splash them."

He is crestfallen. "Oh."

I give him a big hug. "We'll play in the water after class, I promise. Can you do just swimming for now? Just until the end of class?"

"Oh.... ohhhhkay."

I point toward the teacher and look from his face to hers, until his eyes focus on her. I return to the edge of the pool. Now the kids are doing a different exercise and I've missed the instructions. Shivering, I grab my flutterboard, get back into the cold water, and watch them. I’m still afraid of the water.

Sophia Isako Wong is an associate professor of philosophy at Long Island University in Brooklyn, New York. Her brother Leo has Down syndrome. Here's what she said about the photo above: I don't have any photos of us in the pool, but here's one of us in the bath -- another activity in which I routinely supervised my brother while my parents were out of the room. I think our expressions show the way we feel about water.

'Burden' of complex kids not whole picture, ethicist says

I was privileged to interview Franco Carnevale at the ethics conference on children with disabilities at the Montreal Children's Hospital last week. Franco is a clinical ethicist who worked for a couple of decades as head nurse in the pediatric ICU at Montreal Children's. He's also a psychologist!

Here he talks about "an implicit understanding that (children with disabilities) don't count in the same way as other children" -- a bias found within the health system itself. To illustrate his point, he shares a research project to study families of children who live at home with ventilators. Franco admits that going into the study, he assumed they would be documenting primarily hardship and stress. But what he found was "a lot of the most stressful moments in life are intertwined with the things that matter the most." He titled the resulting paper: Daily Living With Distress AND Enrichment.

Do not miss this clip! Go directly to YouTube for a full-screen version. Louise

Friday, December 2, 2011

Does every child matter?

The results of 'Does Every Child Matter, Post-Blair?' were released today. The research project at Manchester Metropolitan University asked what life in England is like for disabled children age four to 16. Researchers spoke to disabled children, their parents/carers and professionals to ask about their lives from 2008-2011.

Here are a few findings I know will resonate with readers. Check out the report in detail (link above) to learn about the researchers' recommendations. Louise
  • disabled children sometimes sit outside 'mainstream' children's policy and 'mainstream' services including education, health, leisure and social care
  • families with disabled children are often isolated with little support in their communities
  • despite changes in legislation, disabled children are still excluded from a range of leisure activities. The biggest barrier to disabled children's access to leisure was the attitudes of other people. Physical and attitudinal barriers mean that many disabled children had no choice but to attend segregated leisure activities.
  • disabled children living with life-limiting conditions and their families are likely to experience isolation and poverty. Parents and carers are often excluded from support networks. The discrimination families face in life continues in death.
  • parents come under huge pressure to make their disabled children 'normal.' When families differ from the 'norm' this leads to exclusion -- children are excluded from friends, schools and leisure opportunities and parents are excluded from friendships and work
  • disabled children have often been excluded from arts for its own sake (their creativity is often thought about in terms of therapy)
  • parents are often asked to talk negatively about their disabled children in order to access services and support, whether in education, health, leisure or social care/benefits. Parents are asked repeatedly to talk about what their children can't do, as opposed to the support they require. Parents say this has a negative impact on their relationship with their child.
  • disabled children often have to deal with negative perceptions of their bodies, including being stared at or questioned about their bodies. Disabled children's bodies often cause emotional reactions in others because they serve as a reminder that none of our bodies are normal
  • when disabled children are viewed as 'vulnerable,' bullying is often accepted as inevitable. Often the bullying goes unnoticed by the adults who are sometimes also the perpetrators.

International disability day

Change your Facebook profile picture for the day December 3 to support the International Day of Persons with Disabilities. Use your own social network to raise awareness!


1. Visit the Holland Bloorview fan page.
2. Right click on our profile picture and select "save target as" in the drop menu.
3. Save the image on your desk top.
4. Go to your Facebook page and change your picture.

Ask your friends to do the same!

A fate worse than death?

I attended a fascinating conference Wednesday at the Montreal Children's Hospital on ethics related to the care of children with disabilities.

One of the themes was cultural devaluing of children with disabilities – and how it can play out in decision-making about care, including whether to withdraw care from premature newborns with significant disability.

A neonatologist in the audience made the following comment.

“There is a feeling among my colleagues – an unspoken and probably unconscious bias – between physical and mental disability. Sometimes neonatologists think if you're not perfect mentally, you're better off dead. But when it comes to physical disability, they will go a long way with interventions.”

Neonatalogists care for newborns with complex, life-threatening problems related to prematurity, illness or congenital disability.

I think the stigma that intellectual disability is worse than physical disability is widespread, even within the disability community itself.

We can't know if what the doctor said about the pervasiveness of this attitude in neonatology is true. Perhaps she is ascribing her own bias to others. But it would certainly be shocking if specialists trained in the care of disabled newborns held such views.

According to the American Academy of Pediatrics, neonatologists go to medical school for four years, then train as pediatrics residents for three years, then train for three more years in newborn intensive care. That’s a decade of learning.

Is it reasonable to expect that in this 10-year span the attitude that intellectual disability is worse than death would be challenged?

Neonatologists, as part of their training, should be required to have extensive interaction with families of children with intellectual and other disabilities, so they have a firsthand understanding of what life with these conditions is like. I hope we hear from a neonatologist about what kind of exposure to families of children with disabilities is included in their training.

At the Montreal conference we also heard about the Disability Paradox – that people with serious disabilities rate their lives as good or excellent while able-bodied people, particularly medical professionals, rate quality of life in people with disabilities as poor.

And we heard about research that shows that the way a health problem is framed influences the decision a family makes about treatment choices. How clinicians order information, the words they choose and even the tone of their voice can have a significant impact on how parents of children make medical decisions.

If a neonatologist were to believe that intellectual disability is a fate worse than death, how could that bias not seep through when conveying this diagnosis to families? Wouldn't that belief run contrary to communicating that a child with intellectual disability has value?

When a life hangs in the balance, I believe parents should receive the most complete information about intellectual disability, including the perspectives of families whose children live with it.

Thursday, November 24, 2011

Balancing a marriage and kids with special needs

Noor Al-Shaikh (above) and his wife Rita have three children. Gisele, 10, and Sienna, 5, have a rare, non-progressive condition called Juvenile ALS type 2. They can’t walk on their own and use canes, walkers or a wheelchair. Sister Iliana, 7, is not affected.

While challenging, Noor believes raising children with disabilities has strengthened his relationship with Rita.

In this BLOOM clip he shares strategies for keeping a marriage strong. To view this on a full screen, go directly to YouTube.

Wednesday, November 23, 2011

When is autism an advantage?

Changing perceptions: The power of autism is an interesting piece in the online Nov. 2 issue of Nature magazine which has produced a lot of blogger discussion.

Author Laurent Mottron, a University of Montreal researcher in the cognitive neuroscience of autism, has eight people on his research team who have autism.

"As a clinician, I...know all too well that autism is a disability that can make daily activities difficult," Mottron writes. "One out of ten autistics cannot speak, nine out of ten have no regular job and four out of five autistic adults are still dependent on their parents. Most face the harsh consequences of living in a world that has not been constructed around their priorities and interests.

"But in my experience, autism can also be an advantage. In certain settings, autistic individuals can fare extremely well. One such setting is scientific research. For the past seven years, I have been a close collaborator of an autistic woman, Michelle Dawson. She has shown me that autism, when combined with extreme intelligence and an interest in science, can be an incredible boon to a research lab.

"...Autism's many advantages are not part of the diagnostic criteria. Most educational programmes for autistic toddlers aim to suppress autistic behaviours, and to make children follow a typical developmental trajectory. None is grounded in the unique ways autistics learn.

"In cases where autistic manifestations are harmful — when children bang their heads on the walls for hours, for example — it is unquestionably appropriate to intervene. But often, autistic behaviours, although atypical, are still adaptive."

Facing Autism in New Brunswick has written a piece in response to the Nature article: Autism advantage? No! Connor Advantage? Yes!

"It is my deeply rooted belief that it is important to speak honestly about autism and the challenges it presents, particularly for those persons who are severely affected by autism. I do not believe that autism, a mental disorder, is an advantage and my commentaries reflect that belief.

"That does not, however, mean I agree with the flimsy argument that describing autism challenges honestly means that I am not recognizing the rights of autism persons or recognizing that an autistic person has any intrinsic value as a human being. That argument is based on nothing more than ideological rhetoric."

What do you think?

Filmpossible fever

Gabi Cherng and Gavin Daley, second and third from left, were recognized at the filmpossible awards last week as the stars of the first-place entry in the photo category -- Lucky fin love -- and the I can be me! video, which won the Cisco Visibility Award.

They accepted the first award for Toronto photographer Annya Miller, who was unable to attend. Their submission included the comment: "Left hands are so over-rated!"

Holland Bloorview's filmpossible is an online contest where filmmakers and photographers submit videos and photos that bring visibility to disability.

Tuesday, November 22, 2011

Parents play critical role in safety of hospitalized children

A study published in the Canadian Medical Association Journal this week underscores the importance of families in identifying adverse events or near misses (medication errors, treatment complications, equipment failures or miscommunication between staff or between staff and family) in the care of hospitalized children.
  Over one year, 544 families of children on a single ward at British Columbia's Children's Hospital were asked to answer a questionnaire about adverse events and near misses during their hospital stay.
  The purpose of the study was to test whether the new family reporting system would change the rate of reporting of adverse events by health-care providers.
  The study found that family reporting did not alter the rate of safety reports by health-care providers.
  A total of 321 adverse events were identified by families. Almost half were deemed by independent clinical experts who reviewed the data as legitimate 'near misses' or to have caused some degree of patient harm.
  Only 2.5 per cent of the adverse events reported by families were reported by health-care providers.
  Of the 321 events reported, 139 families received apologies for the incidents.
  "We found that families observe and report safety problems differently than do health-care providers," researchers said. "Further research is needed to delineate how best to harness the potential of families to improve the safety of the health-care system."

Monday, November 21, 2011

Talking about limb difference

In the first of a series of BLOOM clips, Janelle Cherng talks about explaining daughter Gabi's limb difference in social situations.

In BLOOM clips parents and experts talk about childhood disability. Send us your ideas for future topics! Thanks, Louise

Violin solo: 'It's not something I thought I'd be able to do'

We've written about Eric Wan (above) before, a graduate student in engineering at Holland Bloorview who helped develop the Virtual Music Instrument, a software that allows children who can't manipulate conventional instruments to make music. Eric, who was paralyzed at age 18, will play violin -- with head movements -- with the Montreal Chamber Orchestra tomorrow. Watch this YouTube video and read more in this Montreal Gazette piece.

Friday, November 18, 2011

'The third parent'

Sophia Isako Wong (left) is an associate professor of philosophy at Long Island University in Brooklyn, New York. She is also a sister to Leo (right), who has Down syndrome. Below is a short story Sophia wrote about her childhood. But first she speaks about her research into children who take on a parent role in caring for siblings with disabilities or other members of the family.

In my research, I analyze existing psychological research on ‘parentified’ children in the US and the UK to explore how distinctive elements in the early caregiver role negatively impact children’s emotional and moral development.

The research shows that taking on the parent role prematurely as a child has mostly negative impacts, to be honest with you. Of course there are many positive things that come out of growing up with a sibling with disabilities, some of which I've tried to show in the story, but I feel that children are harmed when parents ask them to take on responsibilities requiring adult skills. Hope the story doesn't come across as too hard on my parents. It wasn't their fault they didn't know about respite for the first 25 years of my life.

‘The third parent’
By Sophia Isako Wong

It is a hot summer afternoon and I am looking at a pig. Large, pale pink, smeared with dust, bristly, and panting, the pig lies on its side in the shade of a wooden shed. It hasn’t moved in the past 20 minutes. My 10-year-old brother sits cross-legged on the cement, having positioned himself directly opposite the pig, so that he can look straight at its face. He is staring attentively at the pig, watching its every move, even though it never moves. He looks like a besotted lover watching his beloved sleep. In fact, the pig is probably asleep; its eyelids are almost closed.

I examine my brother’s face. Chin propped in his hands, elbows on his knees, he is blissfully unaware of my impatient mood. He is daydreaming about the pig, perhaps imagining the pig’s dreams. He is utterly content and at peace.

“Leo? Let’s go see the river otters. Remember when we saw them playing in the water last week?”

He doesn’t turn his head towards me. “Not yet. I’m watching the pig.”

“Still? Why do you have to stay here so long?”

“I love pigs.”

This is our weekly routine. Every Wednesday, our mother teaches violin students in our living room. She hands me money and kisses us goodbye as the doorbell rings. Hand in hand, my brother and I walk up the hill, then down the gentle slope to the Storyland Valley Zoo at the end of the road. I pay our admission, and snatch glimpses of other animals as Leo pulls my hand with determination, heading straight to the pig. Leo sits down in his appointed spot, right across from the pig, and refuses to budge until he has had his fill of pig-watching.

I am bored. I explore the entire area adjacent to the pig’s enclosure with my eyes. I see dirt, dead grass, the fence against which Leo presses his face, an intriguing house-sized cage next door with tropical birds drowsing in the afternoon heat. I sidle toward the cage and position myself so that I can watch the birds while still keeping an eye on my brother in the background.

Sometimes I play a game in my mind, fantasizing that I walk away from him and go to visit two or three other animals while he is entranced by the pig. Unlike Leo, I don’t have a favourite animal. I like to see them all, to take in the different sights and sounds, to explore the whole zoo as much as possible. I hate staying in the same spot every time. When I’m with Leo, and I’m always with Leo because our family takes him everywhere, we never get to see more than a few animals each week, because we spend most of the time pig-watching.

Walking away from him is just a fantasy; I am fully aware that I can’t take that risk. If anything happens to him, my parents will never forgive me. I’m responsible for getting him back home, safe and happy, once the lessons are finished. If he makes any mistakes, gets into trouble, or bothers anyone, perhaps by going up to them and hugging them, or sitting in a man’s lap to stroke his beard admiringly, it will be my fault for not watching closely enough. I am the third parent. I am 11 years old.

During Leo’s pig phase, he drew pictures of pigs, made pig-like sounds, received toy pigs for every special occasion, and watched that same pig every week for the whole summer. When we asked him not to “eat like a pig,” he would reply, “Why not? I love pigs.” He squealed with delight when our grandmother brought him a huge life-sized pig toy from Japan, covered with fabric in a curious floral pattern reminiscent of an Irish granny’s dining room. The two of us spent many happy hours throwing the pig at each other in a game we called “Dodgepig.”

As Leo matured, he stopped worshipping pigs. Now a middle-aged adult, he paints many kinds of animals, especially African wildlife, and his #1 top favourite is hyenas. I think he first fell in love with hyenas when they appeared onstage as masked humans in military-style khaki combat boots, snarling rebelliously and plotting against the Lion King.

These days we don’t see each other more than once a year or so. The New Year has started, and it is the night before Leo has to get up early to catch his flight home. We’re both tired, but we don’t want to go to sleep just yet. So we are lying side by side, enjoying our time together, not wanting to say good-bye until the last minute.

I ask, “Leo, why do you like hyenas so much?”

His reply is simple: “Because they’re carnivores.”

I think I know what he means. Hyenas are powerful, strong, clever animals who eat fresh meat. Like dogs, but they get to run wild and free. They watch larger predators kill their prey, then move in to scavenge their meals. When Leo eyes my unfinished plate, asking “Ummm.. do you have plans for that?” he is scavenging extra food along with the hyenas.

Leo opens his mouth and emits a sound I’ve never heard from any human throat before. It is a low growl, almost like a Tuvan throat-singer’s undertone, which I cannot reproduce no matter how I try. After years of voice lessons, he can relax his throat and reach below the normal range of his baritone voice to produce this frightening, throaty growl.

This sound inspires me to make a hyena mosaic. I select shades of Mexican smalti (glass) for the hyena’s body and mix dark grey marble and glass to make that fearsome growl come alive. While I outline the shape of the hyena, a bright red and orange crown emerges unbidden on her head, so I call the piece “Hyena Queen.” I mail it to Leo in celebration of his 40th birthday.

He calls me while I am at work and leaves a voicemail: “Hey, Sophia! I want to give you a message. Your parcel just arrived. For my birthday present. The hyena mosaic. And… I like it!”

Above is a photo of us with Leo’s hyena collage and drawing, a sculpture of a hyena, and my mosaic on the wall behind us.

Seeing through a parent's eyes

I'm speaking to a group of student engineers next week about our journey trying to find a robust means of communication for Ben. These students work with families to develop technology that gives children who can't speak or move access to communication and control of a computer.

As I was putting the presentation together, it struck me that there were two distinct ways of "seeing" Ben. One was through medical descriptions that focus on deficits, and the other was through a parent's eyes -- mine.

I think every parent of a child with disability wishes the world could see their child through their eyes. Especially when a child can't speak, the parent's knowledge of that child's inner life is so critical.

This passage from Cognitive Disability and its Challenge to Moral Philosophy captures this beautifully:

Philosopher Eva Kittay quotes writer Evelyn Keller talking about Nobel-winning scientist Barbara McClintock.

Inevitably, "seeing" entails a form of subjectivity, an act of imagination, a way of looking that is necessarily in part determined by some private perspective. In ordinary life, these private perspectives seldom emerge as discrepancies; the level of shared vision required of people to cooperate is usually met. But science and art alike make tougher demands on intersubjectivity...; both are crucially dependent on internal visions, committed to conveying what the everyday eye cannot see."

Keller, Kittay writes, "goes on to argue that McClintock's 'feeling for the organism,' the close personal attentiveness that McClintock devoted to the entities that she studied, allowed a personal internal vision to see what the 'everyday eye,' which in some cases are the eyes of other scientists as well as lay people, could not perceive.

"One can say the same of someone who is in close contact with a dependent person, especially a person who is limited in his or her communicative skills. The close attentive eye needed to care for the dependent individual gives rise to perceptual capabilities that are not shared by those who have at best a glancing acquaintance."

I hope that in my talk to the students I can emphasize how critical it is for them to take the time to see the child they are working with through their parents' eyes. For without that lens, they will have a very limited and murky view.

Thursday, November 17, 2011

This and that

Sara, BLOOM's designer, and I walked in Spiral Garden the other day (above). It's the magical location for a summer program run by practising artists that brings together children with and without disabilities. It's a peaceful place that fills you up with nature and growth and colour.

I've been mulling over some blog ideas in the last couple of days, but none have come to fruition. One is about what I perceive to be an unhealthy, over-emphasis on IQ percentiles in services and schooling for people with intellectual disabilities.

We had a wonderful open house in the Family Resource Centre last night and many parents and staff attended. I was able to do three video interviews with parents for a new series I hope to post on BLOOM. These will be short 1.5 to 2 minute video clips of a parent talking on a topic of interest.

The interviews last night were about: helping others feel comfortable with your child's limb difference; strategies to keep your marriage strong when raising two children with disabilities; and cultural and language barriers to accessing services for parents in the Canadian Somali community.

Sara will help me with editing early next week so stay tuned.

One of my British cousins read the last issue of BLOOM and described it as "uplifting" and "sobering." I thought that was an apt description for special-needs parenting!

Here are some links. Louise

Inclusion: The right thing for all children (take a look at the comments too)
Medikidz (Comic books that convey medical information for kids)

Monday, November 14, 2011

Cognitive disability and personhood

Author Donna Thomson (The Four Walls of My Freedom) directed me to a book called Cognitive Disability and its Challenge to Moral Philosophy. It's a collection of essays that address philosophical questions raised by people with cognitive disabilities, which the authors define as those with intellectual disability, autism and Alzheimer's disease.

I haven't read the book yet, but the introduction notes that people with intellectual disability fall short of many of the traditional philosophical criteria for personhood, notably, the ability to reason.

I googled a couple of the authors and came upon this fascinating podcast of a talk by Sophia Isako Wong, an associate professor of philosophy at Long Island University in Brooklyn, New York. Wong's presentation is titled Duties of Justice to Citizens with Cognitive Disabilities and asks: "Do we have different or lesser duties of justice to citizens simply because they are labelled with cognitive disabilities?"

She looks at Harvard philosopher John Rawl's theory of justice which includes the fully-cooperating assumption: "I have assumed...that while citizens do not have equal capacities, they do have, at least to the essential minimum, the moral, intellectual and physical capabilities that enable them to be fully cooperating members of society over a complete life."

Some interpret this passage to mean that people with cognitive disabilities don't count as fully cooperating members of society.

I encourage you to watch Sophia's podcast (I haven't watched the entire presentation). I have taken the book of essays out of Holland Bloorview's library and the content looks fascinating. One of the editors -- Eva Feder Kittay -- is a philosophy professor at Stony Brook University and has an adult daughter with intellectual disability. I think Eva would be a wonderful contributor to BLOOM and hope to seek her out.

Thursday, November 10, 2011

We had the same ache in our hearts

We've had guest blogs about the impact of a child’s disabilities or special needs on a marriage. I found a piece I wrote about the different ways that my husband D’Arcy and I reacted to Ben’s genetic condition early on. It can use some work, but I thought it might be of interest to other parents. D'Arcy read the piece and remembered some of these things differently, but was okay with me running it! Louise

We had the same ache in our hearts
By Louise Kinross

I was the bearer of bad news.

As Ben’s primary caregiver, I was typically the one who heard first about new diagnoses. I received the news and stewed about it all day, then regurgitated it the second that D'Arcy walked in the door.

I got my sense of control from becoming an expert on my son’s rare genetic condition and therapeutic treatments. I thought that if I could only learn enough about his special needs and every available medical and alternative treatment, I could ‘fix’ or in some way control his future.

D’Arcy got his sense of control from losing himself in work he loved all day, then coming home and wanting to delight in his son. He kept his anxieties and fears shelved in an unreachable place, protected by a blanket of denial. He wanted to be the happy, easy-going, laid back dad – the party dad who would do anything to make his son happy and would never, ever hurt him, even if something was medically necessary.

When Ben was almost 3, a virus that we all had turned to pneumonia in his right lung. We were used to giving Ben ventolin masks whenever he had a cold – which brought on his asthma and terrible inbreathing. However, this time in Emergency, when D'Arcy and I were left alone to give him the masks, he screamed and fought us off desperately. D'Arcy had to restrain him by holding his arms and hands down with his hands, and his body still with his knee, while I kept the mask on his face. I'm not sure if the medication smelled funny or if perhaps the compressor made a different noise from the one we have at home – but Ben fought to be free of it as if he was suffocating.

I knew it was essential for Ben to have the masks, but D'Arcy's soft spot kicked in.

He began to loosen his grip, letting Ben throw off the mask.

"He needs the mask," I yelled over the whir of the compressor, frantic that we not waste the medicine that was now billowing out aimlessly.

"It's hurting him," D'Arcy yelled back. "Give him a break."

"We are not giving him a break by not treating him," I snapped, and placed the mask firmly back on his face. D'Arcy pulled it off again. I put it back on and then we fought over it like two children: me trying to yank it away while D'Arcy refused to let go.

"XXXX off," I screamed.

Ben, as always, was at the centre of our relationship.

My daughter Lucy, now eight months old, lay behind us, sleeping peacefully in her car seat.

It would have looked comical, if it wasn't so sad.

I felt hopeless.

Feb. 1, 1997

DArcy and I were at each other's throats at the hospital. I am so tired of it. After our talk on Friday I felt some hope, like we could work things out – build a satisfying relationship and family. Now it just seem like we are back in the trenches. I am embarrassed and ashamed that I allowed myself to be mad in front of Ben.

It hurts so much to see Ben going through what he went through today: Being restrained for the mask, then being put in a "trap-like" device to have his chest x-ray. It is torture. I felt like I wanted to die when I watched his desperate screams. I feel so fragile emotionally, like the smallest thing will knock me off my feet.

D’Arcy tended to minimize and downplay any signs that Ben had medical or developmental problems.

I magnified them, carrying on me a yoke of perpetual anxiety, worry and high-alert.

I was the one who did the emotionally-difficult therapies – forcing your child to do things that were hard, frustrating, out of their comfort zone. Being the tough one because I never wanted to feel we hadn't tried everything we possibly could to help Ben.

I was often the one who took over the painful medical interventions because I knew they "had to be done." D'Arcy didn't seem able to do them emotionally.

Things like giving him repeated ventolin masks; drops at night in his highly-sensitive and painful ears (with structural differences that caused severe ear infections, despite eight sets of tubes, he learned as a toddler to go to sleep holding his hands over his ears); watching him fight sedation for medical tests till he began falling over; forcing him to wear a patch over his strong eye; taking his beloved ‘bobo’ – bottle – away from him at just over a year because it might be contributing to his ear infections (wrong).

Oct. 19, 1996

I have such mood swings. At certain times of the day I am feeling positive and happy and at others I feel very alone, isolated, depressed, angry – and a more recent emotion: bitter. It is hard for me to see others starting out in relationships or marriage or getting pregnant and knowing that they will probably never know the pain we have. I know I have to work through this because I DO NOT want to be a bitter person.

I continue to feel alienated from D'Arcy and angry at him. I feel like most of the "special" care for Ben – his physio, eye patch, appointments, all of the research about LGS and his growth problems – falls on me and sometimes it is too much. D'Arcy does do a lot of things with Ben – giving him his medicine, putting him to bed, getting up early in the morning with him. But I wish he would support me more with the daily physio, patch, growth problems and other issues related to Langer-Giedion syndrome. I have been feeling very negative about our relationship and it scares me. It seems like there is too much Ben-related pressure, stress and emotion. We are constantly setting each other off.

When Ben first started eating solids he had numerous choking incidents. Our pediatrician said they were isolated. D’Arcy tended to downplay them because he often wasn’t present when they occurred. We had taken special CPR training but the techniques we were shown – to hold him facing down over a knee and hit his back hard – seemed to make the choking worse. There were calls to 911 and police and fire trucks. I would shake afterwards. But when I called D’Arcy at work, he got so used to this that as I began to recount the latest horrifying incident, he would say simply: “Is he breathing now?” And if I answered yes, he didn’t want to hear more about it. Ben was later diagnosed with an uncoordinated swallow that meant when he swallowed, only some food went down, while the remaining food pooled at the back of his throat.

I went back to work full-time when Ben was 4. Suddenly D'Arcy – who had mornings off as he worked a late shift – was indoctrinated into the world of daily therapies and medical tests. One medical visit stands out.

Ben had hearing aids, but it was almost impossible to get him to wear them because his ears were so painful from infection. I called D’Arcy to ask how the morning appointment with the audiologist went.

"Horrible," he said.

"What happened?"

"She tested him without his hearing aids, and then she insisted we put the aids in. He kept taking them out, to the point that I had to physically hold them in and he was crying and fighting me.”

“Oh Darcy!” I said.

“Then I started to cry,” D’Arcy said. “So she told me I could stop.”

"I'm so sorry," I said. And I knew he had the same ache in his heart.

Tuesday, November 8, 2011

Does disability dampen teen sexuality? No! doctors say

Teens with physical and intellectual disabilities are just as interested in romance and sex as peers, but are less likely to have a partner because they lack social opportunities and sex education, say two McMaster University doctors.

“Most of the challenges are a result of the widespread myth of asexuality and other negative stigma surrounding people with disabilities,” said Dr. Jan Willem Gorter, a physiatrist who runs a teen transition clinic at McMaster.

Gorter was speaking with Dr. Natasha Johnson, a pediatrician in adolescent medicine at McMaster, at the annual conference of the Ontario Association of Children’s Rehabilitation Services in Toronto yesterday.

Studies of youth with cerebral palsy and spina bifida show that while most wish to have a partner, less than a quarter have a steady boyfriend or girlfriend, Dr. Gorter said. “Friendships and relationships are just as important to them but their level of social participation is challenged."

Youth with disabilities report barriers to getting together with friends and participating in after-school activities and say they often can’t get out because of a lack of transportation. Anxiety about body image and low confidence are also factors, as are physical problems like spasticity and fatigue.

Youth don’t typically receive the sex education they need as it relates to their specific disability, Dr. Johnson said.

For example, they need to know how contraceptives may interact with other medications they take. The oral contraceptive pill can interfere with anti-seizure drugs and increase the risk of blood clots. Depo-Provera, a birth-control injection, can reduce bone mineral density.

Youth with spina bifida have a greater risk of having children with a neural-tube defect, so they need to understand the importance of taking folic acid.

Dr. Johnson noted that youth with disabilities are twice as likely to be victims of sexual abuse. “They have multiple care providers, they are dependent for sensitive personal care, they may not have the language to (report abuse) or they may lack an understanding of what is appropriate.”

Dr. Gorter said that stereotypes make it less likely that health workers and parents talk to youth with disabilities about sexuality.

Sexual development needs to be discussed early and often with children and their families. “They need to be given permission to talk about it,” he said, noting that he has youth in his clinic fill out a transition profile that includes areas like education and employment and intimate relationships. In the latter, youth check off which of these statements best describes them: ‘I don’t have experience dating. I have experience dating. Or I am/or have been involved in an intimate relationship.’

“If the teen doesn’t have experience, that’s an opening to ask: ‘What would dating look like for you? Are you interested in boys or girls – or both? What are your desires and how can we help you?”

Dr. Johnson said we need to teach young children the names of body parts and appropriate physical boundaries and to acknowledge sexual interest as an expectation in all children. Teens should be given the opportunity to speak with a health professional about sexuality privately.

“We need to be aware of our own assumptions,” she said, recalling a 12-year-old client with physical and learning disabilities whose short stature made her look much younger. “She told me she was attracted to males and had been dating since Grade 1. We can’t make any assumptions.”

Monday, November 7, 2011

Silent Sunday night

Sunday, November 6, 2011

Silent Sunday

Thursday, November 3, 2011

Resting in that grey area

Some of you noticed that I deleted a post I wrote last weekend.

I had wanted to share something going on in our lives -- from Ben's perspective -- without getting into a lot of detail.

But because I felt compelled to respond to comments, I wrote more than I was comfortable with. I felt I had to defend my choices.

It got me thinking about how there is no one "right" way to parent a child -- with or without disabilities. Our children and families are too unique to benefit from cookie-cutter solutions.

But sometimes within the parenting community -- and within the special-needs community in particular -- we make judgements about other parents' choices and decisions. We take black and white positions and say there is only one way to parent, and if you're not doing it this way, you're not doing what's best for your kid. Maybe it's breastfeeding, or the language you use to describe disability, or maybe it's about inclusion, schooling, the amount and type of therapy you've got for your child, or where your adult son or daughter lives.

There are so many issues that can divide us, make us feel inadequate, when what we really need is support.

It helps to remember that we can never fully know another parent's or family's reality.

"Even when I think I understand what it's like to be a parent of special-needs children, I can only walk in my shoes, on my mountain and explain my view from here" wrote daddy blogger Tim Gort on Hopeful Parents last week

And as author and parent Amy Baskin writes: "Hang with people who make you feel good. Who don’t judge. Special-needs parenting is not a contest. You and your kids do the best you can."

What advice would you offer a younger you?

BLOOM contributor Amy Baskin has a moving post at Today's Parent: it's a letter she wishes she could have written to herself as a brand-new mom to a child with autism.

If you could look back and give yourself advice for those early days, what would it be?

Talk to me!

I'm keen to film and post a series of short video clips with parents talking on topics that matter to you.

What would you most like to hear another parent talk about?

Please let us know. Thanks! Louise

Wednesday, November 2, 2011

Take your kid to work day

Sunday, October 30, 2011

Happy Halloween from Ben!

I'm not sure if I mentioned that Ben went to his high school Halloween dance on Friday night. Apparently a group of girls asked him to dance, so he did. Ben transferred to a regular high school in our board in September. It has a deaf/hard of hearing program where the students have some classes on a separate unit and others in the mainstream with interpreters. I just received this message from the head of the program. She sent it to all of his teachers and the principal:

"Ben was our one and only DHH student who showed up to the Halloween dance! His costume was totally awesome! The best! He's got guts! I am so very proud of him! He is one remarkable young man who is displaying his spirit to the fullest."

Silent Sunday

Saturday, October 29, 2011

Book series brings Madi to life

I LOVED Sarah Leal's first children's book -- So Don't! And See What Happens. She just released a third -- The Cottage Tooth Fairy -- and is working on a fourth. One of the main characters in this series is Madi -- a girl with cerebral palsy who uses a voice device. Madi is based on Sarah's daughter Madi, now 15, who lives with Sarah and her husband Luis in Guelph, Ontario. I asked Sarah why she started this series and why it would be of interest to families of children with disabilities. Here's what she had to say:

I started writing this series when my daughter Madi was little. She had SO MANY appointments and we had to wait in many a waiting room so we would bring a ton of books and read and read and read. After reading the same stories over and over I started to change up the character names to match Madi's friends and family. Then I started to change the stories too. As Madi got older I looked to buy books with a main character with a disability who was hopefully non-verbal -- but had no luck. The only books that I found seemed rather "educational" and that was not what I wanted. I decided that there was a spot for me in the writing world, and that was how I got started writing my books.

All of my stories come from a part of our real life. Then I shape them and sprinkle in some fun. The Cottage Tooth Fairy comes from a real toboggan ride that my husband Luis and Madi took. It resulted in the loss of Madi's first molar and Luis being scolded for not holding on tight enough. LOL! This story has Madi and her fictitious brother Colin finding out what happens when you lose a tooth at the cottage. Childhood hijinks to trick the Tooth Fairy result in a whopper of a problem, and some rather angry cottage wildlife.

My books give an opportunity for a child with a disability to relate to the story without being centred out. Peers can enjoy a story that supports acceptance -- again without being told explicitly.

My books can be shared with peers and educators who are involved in your child's life. Other students may look at their classmate differently when they realize that people with disabilities live lives just like theirs.

One day when Madi was about four a little girl in the park asked me about why Madi uses a wheelchair. I gave my usual response: "Some people are born and need to wear glasses to see. Madi was born and needs to use a wheelchair to get around." The girl said "like a fancy accessory." I just about fell over with laughter. To this little girl the chair was a fancy accessory. Love it! Disability in my stories is an "accessory."

I have sold my books in Canada, the U.S., England, Hong Kong, Australia, Argentina, Dubai, South Africa and New Zealand. I have the best job in the world. My next venture is to get into the school boards and be a guest author. Eventually, perhaps my daughter Madi would like to take this over. It would be amazing for her to go into a class and read to children.