Sunday, September 30, 2012


Thursday, September 27, 2012

Coming clean on the word disability

I think my best writing happens when I most don't want to write about a topic.

Perhaps that's because it gets at my own ambivalence about the topic and my desire to mask that vulnerability by remaining silent. It means I'm confused and I don't know exactly how I feel. All I know is that the received wisdom on the subject doesn't sit well with me.

Today that subject would be use of the word disability.

Outside of my work at Holland Bloorview, I find I rarely use the word in conversation with people and in particular with my son Ben, who has many diagnosed disabilities. In fact, I can't remember when I last spoke about disability with Ben. A part of me thinks that I "should" be talking about it on a regular basis with Ben, to help him become a better advocate for himself.

But the truth is that in our everyday life I don't see Ben as disabled. The first quality that comes to mind when describing Ben is not disability. I see him as different, yes. Challenged by unusual and grossly unfair circumstances, yes.

I also see him as he defines himself -- as smart, funny and gentle.

I don't reduce him to what he isn't -- "lacking" in ability or the "opposite" of able, which I think is the most common mainstream use of the word disability.

In the disability community we tell ourselves a story about the word disability. We tell ourselves that it used to be a word used to oppress our loved ones, but that disability activists have claimed ownership of it and freed it from its earlier connotations.

We tell ourselves that when people hear the word disability, they don't conjure up an image of lack or loss.

That may be true within the disability community (though we still tend to view certain types of disability as more okay than others) and in places like Holland Bloorview, which have a disability-positive culture.

But when I read mainstream news or follow generic parenting blogs, I see a narrowing of who is valued and who isn't in this society. I see a rigidly-held concept of what it means to live a "productive" life and what is needed to get there, not a flexible one.

I see a culture that places more value on individuality, conformity and competitiveness than community, diversity and collaboration -- though companies and groups launch convincing PR campaigns to suggest otherwise.

I do not see an opening or shift in how people view the word disability when attributed to a person.

I see a culture that is quick to judge people as "deserving" of their situation in life. If I'm a success by Western standards it's because I worked my butt off. And if I'm not, it's because I was lazy. Most people still operate under the fairy-tale illusion that we start off equal in life.

A couple of years ago I led a workshop on how to write about disability. As I put my slides together, I remember feeling torn. Two of my directives seemed contradictory. On the one hand I told people to use neutral language devoid of value judgment: "Stay away from words that elevate people with disabilities to superhuman (saint) status or suggest they're less than human, tragic (abnormality, defect, victim)" I said.

On the other hand I gave them the seal of approval on use of the word disability. I told them that disability is the preferred descriptive term.

But there isn't anything neutral about the word dis-ability. The word "dis" is described in the Oxford dictionary as "expressing negation" or indicating "reversal of a state."

Who wants their human identity to be summed up as a negation of something?

My other son has attention problems. He hasn't been formally identified as having a learning disability, but he takes medication to improve his focus. Last night when I sat in a therapy session with him the counsellor referred to his "learning disability" while we went through a psychological assessment. I don't think he's ever heard his attention problems classed as a disability before. And I had to wonder how that sat with him.

In his head, was he thinking: "I have a negation of the ability to learn?"

No, he wouldn't know the dictionary meaning of the word "dis," but he'd know intuitively that it was bad. When you diss someone or something, you put them down, right?

And if we were judging the precision with which the term "learning disability" allows you to envision how a specific child's mind works or how they live in the world, would you give it an A?

It's the same when applying the word disability to a physical or developmental disability. It tells you almost nothing about the package of qualities that is that person.

Sometimes it will hit me when I'm doing an interview, how clunky, inadequate and biased the word disability is as a descriptor. I'm so used to letting the word roll off my tongue that I don't hear it the way the average person does -- the way people outside our community do.

And I'll catch myself feeling stupid when I ask someone to comment on something related to "kids with disabilities" -- as if this diverse population of human beings could be lumped into a separate species.

Disability in the common vernacular is about what isn't -- it's the absence of something that our culture has deemed good.

It would be as limiting and non-descript as saying I was non-male or non-hair (I have alopecia) or non-young. It doesn't say anything about who I am.

Recently I wrote to Xavier Le Pichon, the French geophysicist who helped create the field of plate tectonics. Contrary to popular Western conceptions about what makes a person human, Le Pichon believes that fragility and empathy are our defining traits. While developing his scientific theories, Le Pichon lived in the original L'Arche community for people with intellectual disabilities. His children grew up there.

"Our culture views disability as a loss, as taking away an essential part of a person and diminishing their value," I wrote to Le Pichon. "How do you view disability based on your time living in L'Arche?"

"In L'Arche, I do not think of...persons as having disabilities," he said. "They are just friends. I consider some of them as being the closest friends I ever had. When you love somebody, you do not think of him as having disabilities. He is what he is. That's it."

It reminded me of when I visted L'Arche in France in the summer. When I asked questions about people with disabilities there, I was met with a blank look. Just who was I talking about? Was I really that coarse and simplistic in my use of language? At L'Arche they don't use the word disabled. It isn't in their lexicon.

I get that in order to acquire funding for the services our kids need, they must be categorized.

But on a personal level, I don't think the word disability plays a big part in many family's lives. I think families are more focused on what their child "is" -- which is immense and can't be quantified in words -- not what they aren't.

Tuesday, September 25, 2012

Dad's age a small risk factor in autism

I was concerned about this study's impact on how our culture views a parent's role in “causing” disabilities like autism. So I was pleased to interview Dr. Evdokia Anagnostou and learn that while helping us understand the jump in autism rates in a large population, the study does not identify father's age as a major risk factor in individual cases. Louise

Father's age linked to autism risk, but overall risk is small

Men in their 40s are more likely than those in their 20s to father a child with autism or schizophrenia, but the overall risk is still low – about two per cent – according to a study published online in Nature last month.

“The majority of babies born to 40-year-olds are healthy, but the study helps explain some of the increased risk in a huge population – which helps explain some of the rise in autism rates in the last couple of decades,” says Dr. Evdokia Anagnostou, a child neurologist who leads a clinical program in autism research at Holland Bloorview.

Researchers in Iceland examined genetic material from 78 parent-child trios, where parents with no signs of mental illness gave birth to a child who later developed autism or schizophrenia, and a control group.

They found that as men aged, they transmitted more random mutations to their child at or near conception. The average child born to a 20-year-old father had 25 mutations linked to the father. This increased by two mutations a year to reach 65 for children of 40-year-old men. The mother’s age had no impact on risk.

“Lots of random genetic changes happen with age and the majority mean zip,” Evdokia said. “It’s the rare ones that lead to syndromes like autism.”

However, the more mutations a child has, the more likely he or she is, by chance, to have one of the rarer, disabling ones.

The study is important because it helps explain the biology of autism, which may aid in treatment. “If we understand the pathways from genes we discover we know where to focus our efforts.”

Evdokia emphasized that autism is “a multi-factorial disease that can’t be prevented at this point. Paternal age can now be seen as one of many contributors to risk – but it doesn’t explain the majority of risk.

“There are many, many reasons why you may end up with a child with autism and if the father is older the child gets this extra little hit. But most of the time a child needs to have many hits to get autism.”

Other factors that increase risk include a father's genetic makeup, such as having a sibling with autism; the fetal environment, including infections during pregnancy and exposure to fertility drugs; and possibly some environmental toxins.

“Some kids will have enough of a genetic hit to cause autism and some will have a genetic risk that interacts with one or more environmental factors.”

Evdokia said that the study is helpful in explaining the increase in autism rates in a huge population – but doesn't identify father's age as a major risk factor in individual cases.

“If someone asks me ‘Do you think I should not have a baby because I’m 40?’ I would say you absolutely should have a baby. The majority of babies born to 40-year-olds are perfectly healthy.”

In addition to improving our biological understanding of the disorder, Evdokia hopes that studies like the Nature one focus research on “the real reasons for autism – so people don’t get stuck theorizing about things like vaccines or power lines, for which there is no evidence.”

Monday, September 24, 2012

Noah in Times Square

Noah was one of the kids featured in a video by the National Down Syndrome Society that aired on the Jumbotron in Times Square Saturday as part of the New York City Buddy Walk.

Friday, September 21, 2012

A place to call our own

By Stacey Moffat

My son Carter (above) has repetitive behaviours and sensory issues. He’s non-verbal and struggles with social skills. Yet he doesn’t have autism.

Carter’s fine-motor skills are weak. He used to drool (before he had surgery) and has problems with motor planning and coordination. But he doesn't have cerebral palsy.

He’s developmentally delayed and has low muscle tone. But it’s not Down syndrome.

Carter's got a smorgasbord of problems that he shares with peers who have autism, cerebral palsy and Down syndrome. But the smorgasbord doesn’t lend itself to any specific diagnosis, other than the catchall "global developmental delay." So we've missed out on the benefits of being part of a defined community, a support network.

Although speech problems are part of the worlds of autism, cerebral palsy and Down syndrome, parents seem to stay rooted within their child's diagnosistic group. No one branches out to form new groups based on common needs, like communication. Who can blame parents for sticking with their groups? If I was part of an organization that offered resources and support and access to loads of parents who’d blazed a trail before me, I’d immerse myself in that group and stay put too.

I tried to do just that when Carter was born. I joined a support group for parents of children with a cleft lip and/or palate. I wanted to learn from other parents and give back by sharing my own experiences.

But as time went on, Carter seemed to be lagging behind the other children. Other parents talked about their kids speaking and meeting typical milestones. I began to realize that Carter was different. He wasn't a textbook case of a child with Pierre Robin Sequence and a cleft palate. But I didn't understand why.

Although I enjoyed the sense of community, I became anxious with the questions new parents were asking: “How is your child doing now that he’s had the cleft repair surgery? Is he having any issues with specific speech sounds? Do you think he’ll need speech therapy?”

I didn’t know how to answer their questions. "No, Carter isn't having issues with specific speech sounds because he isn't attempting to speak!"  I felt a panicky need to ask my own questions: "Your child is starting to speak? How? Why isn’t my son speaking? Isn’t it normal for there to be a speech delay? Why is my son different? What's wrong with him?"

I didn’t ask my questions. Instead, with great sadness, I concluded that the support group was no longer a good fit for us and stopped going.

I was isolated. We were dealing with something bigger than a birth anomaly and our issues went beyond what this group was designed to support. But where would we find support when we didn’t really know what it was we were dealing with? Our issues didn’t fit neatly into a package like Down syndrome or autism or cerebral palsy.

I felt like a drifter, alone at sea in search of answers. What was going on with my son?

My search led me to a speech therapist from the United States who specialized in oral-motor issues. She diagnosed Carter at age five with childhood apraxia of speech and dysarthria. Armed with this information, I was hopeful. Perhaps there was a new speech community we could call our own.

I went to a conference in Pittsburgh by the Childhood Apraxia of Speech Association of North America. This was it, I told myself. I was going to educate myself and make connections with parents and therapists who understood Carter’s speech problems.

I mingled and chatted. I listened to parents tell stories about their challenges to get their children to pronounce specific consonant sounds and string words together. I even attended a couple of sessions on how to work with children to improve speech clarity. Speech clarity? I didn’t have a clue what these parents and therapists were talking about!

Carter’s speech consisted of monosyllabic vowel sounds. He had no consonant sounds. There had never been any babbling – unintelligible or otherwise. Why was I attending a workshop on speech clarity?

We didn't fit into this new speech community either. We were like square pegs and I was trying to fit us into round holes. The realization was devastating.

Shortly after that conference I sent a video of Carter making his limited sounds to Nancy Kaufman, a speech therapist and renowned expert in the area of apraxia. After viewing the recording, Nancy phoned me and, with great compassion, told me to find Carter the best voice device possible.

That’s what I did. And it opened up a whole new world for Carter. He uses his talker at home and at school and he’s starting to use it more when we’re out and about. He makes comments and requests. He asks questions. And he now has a much easier time interacting with everyone, most importantly, his peers and siblings. A goofball at heart, he loves making people laugh with his jokes. And, like his brother and sister, he’s discovered potty humour (he loves the underwear key on his talker).

Carter has had his talker for just over two years now. But we still feel alone. It’s been hard to make connections with other parents of children who use devices. I don't believe it's because they're not out there. I believe it's because we’re small in numbers and we’re all taking separate routes to a similar destination.

If Carter could get together with other children who use talkers I believe it would motivate him. I also think it would be good for him to be around others who communicate at a slower pace. Too often he gets short changed because people don’t allow him the time he needs to say what he wants to say.

I’ve floundered in search of a supportive community for Carter his whole life. Sometimes I’ve felt bitter that Carter doesn’t have a diagnosis that would allow us to fit into a well-defined group. But I’m trying to look at things differently now. Carter just turned nine. I can relate, somewhat, to many parents of children with special needs, because Carter shares traits with each and every one of their children. And for that I am grateful.

I do still have a dream, however. It's that parents whose children use voice devices (no matter what their diagnosis) come together in a supportive group of their own. If you’d like to be involved in an AAC network, please e-mail me at

Stacey Moffat is a former teacher raising her three kids. She volunteers with ISAAC Canada and Gail Fisher-Taylor of Kilometres for Communication to create an AAC network. She blogs about raising a child who communicates differently at More than Words.

Wednesday, September 19, 2012

Are people with disabilities a new economic market?

Rich Donovan (above) was a trader for Merrill Lynch who started Lime Connect, a non-profit that helps companies recruit people with disabilities at the college and professional level.

Donovan is now CEO of Fifth Quadrant Analytics, which provides corporate clients with tools to capitalize on disability as an emerging global market. Here, people with disabilities are seen as consumers, talent and taxpayers.

"In the last U.S. census, 19.6% of the population thought of themselves as having a disability," Donovan writes in Essential Accessibility. "That's not a political or medical designation, but rather how people see themselves, and how their purchasing habits are shaped. If you include close relatives as well, people with an emotional connection to disability climbs to 53% -- over half of the population.

Read more about Lime in this Wall Street Journal piece.

Tuesday, September 18, 2012

First class to no class?

Watch the video (click above) and judge for yourself whether this teenager was behaving in a way that would make him a "flight risk" sitting in first class with his parents on an American Airlines plane. To make matters worse, when the family was rebooked on a United Airlines flight, they found themselves seated in the back row of the plane with two empty rows of seats in front of them. For the protection of the other passengers? From first class to no class?

Of note

Sam's Top Secret Journal: Book 1 -- We Spy

Sam is a middle school girl determined to solve Seattle's mysteries with her gadget-savvy little brother John. Sam also happens to have Down syndrome. Written by an orthopedic surgeon who has a teenage daughter with Down syndrome.

The Spirit Catches You and You Fall Down is one of my favourite books. It's beautifully written and captures the cultural divide between Hmong parents who believe their daughter Lia's seizures have spiritual origins and Western medicine. This piece acknowledges the recent death of Lia, at age 30, and the loving way her family cared for her: Life Went On Around Her, Redefining Care by Bridging a Divide. Thanks for the link Donna!

A Terrifying Way to Discipline Children

A chilling piece on the rise of seclusion rooms and restraints from the father of a six-year-old with language delays who had nightmares after being repeatedly placed in a closet for up to an hour a day.

"At school, her mother and I found Rose standing alone on the cement floor of a basement mop closet, illuminated by a single light bulb. There was nothing in the closet for a child no chair, no books, no crayons, nothing but our daughter standing naked in a pool of urine, looking frightened as she tried to cover herself with her hands."

What I've learned about the compassion of children

A mother writes about a friendship club created by her son's schoolmates.

Surviving the pain at the roots

A first-person account of how anxiety can lead to compulsive skin picking and biting and hair pulling.

Skate soccer: 'This is all I got'

Rollaball is a film about a group of Ghanaian polio survivors who are pioneering an extreme sport that combines skating and soccer. Very cool!

Monday, September 17, 2012

Advice to parents on diagnosis day

Mothers and fathers were asked what they might have told themselves on the day their child was diagnosed in this video by Elizabeth Aquino. Thanks to Elizabeth and all of the parents who participated!

Sunday, September 16, 2012

Ben's get-away note

Ben refused to do his homework yesterday. He was very upset and signed that he was going to run away. He went to get a post-it note and pencil, in what I thought was simply a dramatic flourish. But this is what he produced. For an 18-year-old who couldn't write a year ago, this was solid gold. We high-fived and Kenold and I jumped around in excitement. Then Ben settled down and did his work.

Friday, September 14, 2012

'Everytime I see her I feel guilt:' A doctor's story

An article in the American Journal of Medical Genetics on how geneticists can "improve their abilities to hear and honour patients' stories by writing and sharing stories with patients and with each other" is fascinating and heartening.

In 2010 we interviewed Dr. Rita Charon, who founded the Narrative Medicine program at Columbia University. She described narrative medicine as "the way a nurse or doctor or social worker or therapist might take care of you if they know that you have something important to tell about your situation and if they know that they have to get good at hearing what you tell."

According to the new American Journal of Medical Genetics article, doctors can get better at hearing, interpreting, and being moved by patient stories through a number of techniques, including reading and discussing literary works; writing out the patient's story without medical jargon; reflecting on how they think and feel about a patient and their interactions; and writing their own stories.

"Doctors write stories to give voice to the human element of the illness story that modern medicine has taught them to ignore," says author Dr. Malgorzata Nowaczyk, a pediatrician and geneticist at McMaster University in Hamilton, Ont.

"Doctors' stories can be as powerful as patients' stories, but doctors rarely allow themselves to tell them. But to end the silence on both sides of the patient-doctor divide these stories need to be shared."

Here is a story by a clinical geneticist that Dr. Nowaczyk shares:

"I saw Hannah today. Yet another of my professional successes. Not a single straight bone in her eight-year-old body. I have known her since before she was born, when the gray and black images coalesced to reveal a malformed spine, bowed arms and legs and bent ribs. I told the parents what to expect, over and over again. They continued the pregnancy. They tell all that I am the only doctor who never gave up on her.

"Now eight years later, after almost a year in [the] intensive care unit, after many times spent in the hospital with a breathing tube and on ventilator support -- her chest and lungs are too small, you see, she receives oxygen by a hole in her throat -- she is still here. She is learning to speak in sentences -- very short ones because of the breathing problems, and she is learning to use a motorized wheelchair. She cannot stand and spends most of her time lying on her side, her back bent backwards in a small C. Her eyes squint and tear at bright lights.

"She loves her eight-month-old brother Jack who is already bigger than she is. She loves her school and wants to be just like the Little People doctor she watches on The Learning Channel. We have not been able to get in touch with her, although I phoned her office directly. In spite of my efforts her skeletal dysplasia remains undiagnosed.

"Every time I see her I feel guilt -- guilt at not preventing her birth. She looks so misshapen, so uncomfortable. Finally, I started to talk about her to other people involved in her care -- her tracheostomy nurse, her G-tube nurse, her respiratory therapist. And the intensivist who has kept her alive during all her ICU admissions.

They tell me that she is doing great, that her parents are happy to have her and would not change a thing about her life, that she is a star in her school, that her classmates wait for her, because she knows the right answers, that she has won provincial awards. I need to hear these stories over and over again."

AM J Med Genet Part A 158A:1941-1947

The sun, the moon and the stars

Yesterday on the drive home from work I was thinking about writing a book. The Sun, The Moon and The Stars, I thought.

The stars were an image I used in a story I wrote about Ben's birth.

When I was pregnant with him he woke me with kicks at about 4 a.m. each morning.

It was dark outside and I would walk to the window and look up at the blinking stars and wonder who he was and where he came from.

The stars represented the mystery and majesty of my son and my longing for him.

Later they tracked our drive to the hospital on the cold, clear night Ben was born.

There was a light snowfall, and the snowflakes twinkled, seemingly suspended in the golden street lights.

Less than 24 hours later we walked back out of the hospital, without our baby boy, hollow.

The stars that had guided us were hidden. The diamonds of snow floating in the sky had turned to dirty brown slush under our boots.

The sun and the moon represent my Dad, who died three years ago at age 88. A true British gentleman who grew up in a time of black top hats and horse-drawn carriages, he never lost his sense of wonder at the natural world.

Whenever I feel the warmth of a brilliant sun or see a full, low-hanging moon, I believe it's my Dad, giving me front-row seats to the beauty that still exists in the world.

I went to our local book shop last night. I wanted to get a book I saw reviewed last weekend in the New York Times—called The Revised Fundamentals of Caregiving by Jonathan Evison. It's about a stay-at-home dad who loses his children in a freak accident and becomes a caregiver, working with a teenage boy with Duchenne Muscular Dystrophy.

But before I found that book, I spotted an author I'd read before: Junot Diaz. He won the Pulitzer in 2008 for The Brief Wondrous Life of Oscar Wao. On the table was a new collection of his short stories called This Is How You Lose Her.

I opened it up and my eyes fell on the first chapter: The Sun, The Moon, The Stars.

My thoughts had appeared in black type on the page!

And then I found my book by Evison, and read this excerpt on the inside:

Listen to me: everything you think you know, every relationship you've ever taken for granted, every plan or possibility you've ever hatched, every conceit or endeavour you've ever concocted, can be stripped from you in an instant. Soon or later it will happen. So prepare yourself. Be ready not to be ready. Be ready to be brought to your knees and beaten to dust. Because no stable foundation, no act of will, no force of cautious habit will save you from this fact: nothing is indestructible.

Which I thought was a perfect description of how it feels to learn your child is broken in a way that threatens to keep him on the margins of life.

Thursday, September 13, 2012

After a disaster, outcomes split on gender lines

What happens to people disabled by disasters like the 2005 Pakistan earthquake?

That depends if you're a man or a woman.

A University of Alberta study finds most paraplegic women three years after the Pakistan earthquake were abandoned by spouses and families, while men with the same disabilities were not. The study was published in the July issue of the journal Disasters.

A survey of 73 adults in six remote villages in Kashmir found that of 30 women married at the time of the quake and still hospitalized, 24 had been abandoned by their husbands, who had also abandoned their children. A physician noted that some women deliberately caused bed sores because they feared neglect and abuse if discharged home.

"Everybody has walked away from these women—forgotten about them completely,” said researcher Zubia Mumtaz, an assistant professor in the School of Public Health who studies gender inequality. “Society did not want them. They were just abandoned.”

In contrast, the wives of men with spinal-cord injuries lived with their husbands in hospital over the three years -- so that they could attend to all their needs, and the men were actively supported by their parents and other relatives.

While women's families initially rallied round them, researchers said, the support evaporated.

Most husbands of women with paraplegia had remarried—or were agitating to do so. No wives of men with paraplegia had left their husbands.

"The primary rationale given for remarriage was that a woman was required to undertake the domestic tasks that a paraplegic wife could no longer accomplish—child-rearing, farming and retrieving water and wood."

Monthly stipends were given to the spinal-cord victims. Men received about $70 a month while women got $30. The income would have been significant for the women, who were previously dependent. But it was often appropriated by husbands who, after leaving them for new families, made a monthly trek to the hospital to pick it up.

The researchers note that gender differences meant more women than men were disabled in the Pakistan quake. “The earthquake was unique in that it took place at about 9 o’clock in the morning, when the women were at home but the men were out in the fields," Mumtaz says. "When the homes crashed, when the roofs collapsed, those that weren’t killed were pinned by the steel roof beams." Sixty-five to 74 per cent of people diagnosed with spinal-cord injury were women.

Wednesday, September 12, 2012


Five years ago we did a story about Holland Bloorview client Cassidy Sheng (above), who did inpatient rehab here. Imagine my surprise to see this more grown-up Cassidy in a moving commercial for the Canadian Paralympic Committee. Cassidy is my new model of beauty and strength!


Parents of children with disabilities face "back to school" with a particular kind of terror. That's because we know everything can be pulled out from beneath us. All the things that went right last year -- the learning gains, the tiny buds of confidence, our child's peace of mind -- can be erased by a change in teacher or principal, a new bus route, a missing piece of technology, a program that doesn't fit.

Like a wooden tower in the game of Jenga, our kids need just the right balance of supports to stand. Pull out a block without care and the whole structure comes crashing down.

So as the summer ended my chest knotted up in anticipation of the first week of school.

Two weeks in we're still standing, and I feel touched by grace.

"He seems much calmer, is paying attention more to when people speak to him, and he's walking sooooo much better!" wrote his assistant. "I also see that his right ear is healed -- wow! What a success!"

Most important, Ben's in quite good spirits. He seems happy.

He's able to communicate with me in his own unique code.

Example: He wants a hard-cover Avengers book we saw at the book store once, but have been unable to find on recent trips. So he'll bring me the Avengers book he has, sign "other," then sign "where?"

He likes an old education software called Cluefinders. He found it while surfing Youtube.

I just got him one about Volcanoes that's for Grade 5. But he wants a different one. So out of the blue he signs "4," then gets the Cluefinder game case.

Grade 4? I ask.




I look it up online and find the Grade 4 game is called Puzzle of the Pyramids. He'd found it earlier on Youtube and was most interested in that one. Now as soon as he signs 4, I know he's talking about Cluefinders Puzzle of the Pyramids. Cool eh?

He's more independent. At night he'll get changed in his room, throw his clothes in his basket, put his hearing aids and glasses in the drawer, put on a dressing gown and do up the belt (yeah! He has the fine motor skills to do up a belt!). Then he can get in the bath with the help of a bath bench.

He went on three roller coasters at the Ex.

He can add numbers up to 7. He just brought home the first book of adding 8 and he's so thrilled when he gets it right. After his last session the owner called us in to tell us how well he was doing. It's hard for him to get started, but once he does he goes through the books quickly. A staff person has been sitting with him but the owner feels he can sit amidst the other kids now.

These are all little things that would barely register when parenting a typical child. But as Anchel Krishna writes in her Today's Parent blog, one of the gifts of parenting a child on his or her own unique timetable is that you notice every development. You celebrate it. You don't take it for granted.

"Mom." "Mom." "Mom."

Instead of yelling for me Ben's using the Proloquo voice on his iPad to call me while he's doing his Kumon. No matter what I'm doing, I leap into the air and race over so that he knows it's worth it.

When we visited one of my brothers at a restaurant on Saturday he was relatively well behaved -- even though I know it's hard for him to hear in a noisy restaurant.

He wants a new PC laptop because our Macs don't play some of the games he likes. He's eager to make some money for said laptop but not thrilled with the housework options proposed.

I asked our contractor, working on our basement reno, if there was something small Ben could do. The next day he appeared with a small power screwdriver and drill -- to fit Ben's tiny hands -- and pre-cut pieces of wood tacked up together for a bird house. Ben was very interested in the tools, but not so interested in the sanding which was the next stage of the project. D'Arcy and I conferred and recognized that Ben loves screwing in nails, so perhaps we need to pull apart the pieces of wood so he can do that step first. He'll also have a role filling in nail holes in our basement floor boards and trim.

Last night we picked up a pair of safety goggles (see photo) for Ben's construction technology class at school.

On the way out of Home Depot, he insisted that he needed a coke. Then some wine gums. And finally an expensive hard-cover recipe book for creating decadent, icing-laden cupcakes. Despite his protests he put the items back when told to.

Ben is excited about his grandmother's 90th birthday party and his friend Sasha's bowling party as well. He never misses an opportunity to celebrate.

For the first time in two years, his right ear doesn't have a bandaid on it. A mosquito bite from a couple of summers ago that he wouldn't let heal has finally closed over. We still have trouble with him picking at other scabs, but it's an improvement.

Ben still loves Jessie, the cowgirl in Toy Story -- and any other female movie character with red hair (like Katniss in the Hunger Games).

If Ben could change the world, I'm sure he'd make it more Toy Story-like. People of all shapes, sizes and abilities would be included. No one would grow up and throw away their childish pursuits, sense of adventure or, most important, friends.

No, friends would always stick together. Ben would reverse Jessie's lament about being discarded -- "When somebody loved me, everything was beautiful..." -- into a way of making sure everyone belonged.

Recently I was listing off my latest worries about Ben to Marjorie. "He has his own Cinderella stories," she said.

And he does.

For a person who has experienced so many losses, Ben is one of the happiest, most forgiving and genuine people I know.

Tuesday, September 11, 2012

Hitting the jackpot

I really should start playing the lottery, something with a huge jackpot and low odds. I think I'd have a great chance of winning.

I have three children aged five and under. My first two children have special needs. My daughter has Prader-Willi Syndrome and my son has Duchenne Muscular Dystrophy. The odds of having two children with these two genetically unrelated disorders – both have random mutations – are 1 in 52,500,000. Baby number three (above) does not.

Now consider that I am a special education teacher and my husband works in the field of special needs. What are the odds that one family would include two special needs professionals and two children with unrelated, rare disorders? Some folks would say it’s nearly impossible.

You would be right to think that I take comfort in statistics and science. But the day that I received my daughter’s diagnosis, science shook my world. The doctor leaned across a table and said, “I have a diagnosis for you,” as if she was offering an unusual appetizer. I listened numbly as the doctor talked about chromosomal deletions, genetic testing, percentiles and DNA.

After meeting with the doctor, my husband and I sat in the hospital food court, holding cups of cold coffee and trying to process the news. We looked at the papers the doctor gave us. I now know we were in shock. What does Prader-Willi Syndrome mean?

We clung to our coffee cups and stared around the hospital food court. Everything – people walking by, the bright lights, the shiny tables – had a surreal quality. The world as we knew it had changed. What would this diagnosis mean for our family? How would we tell our relatives? What kind of life would my daughter have?

Our daughter was upstairs in the neonatal intensive care unit. She was 15 days old and had a feeding tube that ran through her nose and into her stomach. She was in the NICU because she couldn't feed and became dehydrated shortly after she was born. My daughter was a pink, floppy, blonde-haired, blue-eyed beauty. We found out later that fair complexion, low muscle tone and initial failure to thrive (inability to feed due to low tone) are traits of infants with Prader-Willi Syndrome.

Soon it was time for my daughter’s scheduled bath. I raced upstairs to the NICU to give her a bath. Bath time was an important ritual for both of us. It was the only time of day she came alive. The water and rough towels stimulated her muscles so she looked alert and more like a typical infant, instead of a floppy rag doll. Her eyes were open and she looked around. Bath time was the only way we connected.

Soon a slew of specialists were involved in our lives – occupational therapists, dieticians, speech and language pathologists, pediatricians and home nursing when my daughter was an infant. The professionals would weigh her, measure her, assess her motor ability and compare her progress with other children her age. At first I memorized the numbers and rankings, believing that she would “catch up” with typical peers.

I wanted her to be the best child with Prader-Willi Syndrome out there. I would tell people that my daughter’s gross motor ability was at the second percentile. That meant that she was better than one per cent of babies her age. I was deluding myself with science and statistics – because ultimately it doesn't matter.

In the land of special needs, things happen differently, and if you don’t look for them you will miss them completely. My daughter is nearly three now and still cannot walk. She spends her day bum-shuffling around, a devoted mother to a dozen baby dolls, giving them bottles and naps and changing diapers. If her baby brother holds still long enough she will change him too.

If I spent my time focussing on what she can't do, I would miss everything that is truly exceptional about her. She does not speak clearly, but can tell knock-knock jokes. And she loves to laugh. She can't walk, but can dance. She moves with a rhythm and style all her own. She has a strong sense of fashion, and loves stylish clothing and accessories. She makes people happy, reaching out to strangers and truly bringing out the best in people.

There is no percentile chart that can measure this. It took us a while to realize that the things that truly count cannot be measured.

In that sense, I think we already hit the jackpot.

What’s my advice to parents dealing with a new diagnosis?

Hug your child, spend time with them and remember how special they are. Make time to connect with other parents who are going through the same thing or who are just slightly ahead of you on the journey in the land of special needs. With the Internet, the world is truly a small place. You are never alone. You can always connect with me on Twitter@specialneedmom2.

Angela is a special education teacher and special needs parent who blogs at Half past normal.

Friday, September 7, 2012

Falling down the rabbit hole of 'why?'

Blame game. That’s what my friend Ijeoma called an important blog she wrote last week.

“The doctors couldn’t tell me why Deane has cerebral palsy. They could explain what happened – that his heart rate slowed down and didn’t get enough blood to his brain – but they couldn’t answer why. And that’s the question parents of disabled children cry at their darkest times.

“Often the only answer they can come up with is it must be their faults. If only they had done something different, if only they hadn’t done something, if only they were better people.”

This rang true for me. I remembered the hours after Ben’s birth when our midwife told me Ben had some unusual features and a pediatrician said it looked like a chromosome problem.

My mind was swirling, trying to make sense of what had happened. Did something go wrong during the birth? It was a student doctor who delivered him. What about the Prozac I was on when pregnant? I had a history of severe depression and before getting pregnant we decided I would stay on Prozac – after careful consultation with psychiatrists and the MotherRisk clinic at SickKids (studies showed there was no increased risk of birth defects in babies of mothers who took Prozac during pregnancy).

I felt a wave of terror, guilt and self-hatred. Had I done something to my baby?

Days later geneticists assured us that Ben’s genetic deletion was caused by a random error at or before conception – and had nothing to do with anything I had or hadn’t done. I went back to psychiatrists and the MotherRisk clinic to ask if there was any connection to Prozac. No they said.

Still, during Ben’s first couple of years I often found myself in a black hole driven by the question of “Why?” I think part of this sprang from my sense of guilt that I wasn’t able to give Ben a fresh start in life.

I know part of it came from the implication – by health professionals and others – that something I’d done during pregnancy was the culprit. I have filled out dozens – perhaps hundreds – of medical forms for Ben recounting my pregnancy history for people who should know that his genetic change happened at conception. I’ve even tried to explain why my pregnancy history is irrelevant and been told that they HAVE to collect the data anyway. One time I took Ben to a naturopath and after taking my pregnancy history she had the ignorance to say: “Well, you may not know for 20 years if it was the Prozac that caused it. But don’t beat yourself up about it.”

Even though geneticists told me that Ben’s deletion was a sporadic error it was hard to shake the feeling that the finger was pointing at me. No mother wants to hurt her baby!

My mind kept switching into overdrive, into detective mode, trying to come up with a predictable storyline as to why this had happened to our precious son.

At first it was related to something I’d done or D’Arcy had done. There was that time I was on antibiotics for bronchitis while pregnant. Was D’Arcy smoking at the time we conceived? I was in a fender bender when I was seven months pregnant.

None of these explanations made sense based on the scientific information we were given, but still I found myself falling down the proverbial rabbit hole, like Alice in Wonderland. “Down, down, down. Would the fall never come to an end! `I wonder how many miles I've fallen by this time?' she said aloud.”

Over the next few years, I gradually came to the understanding that nothing I had done physically had caused Ben’s genetic condition. I had contact with the University of Houston scientist Dan Wells, who had isolated one of the genes associated with Ben’s syndrome.

He said the most probable reason for the change was something called “unequal crossing over.” When D’Arcy’s chromosome eight exchanged parts with my chromosome eight – to ensure more genetic diversity – a tiny piece was left out. He likened it to a green ribbon and a yellow ribbon binding together to become a 150-inch green and yellow striped ribbon. But two inches were cut out in the middle and the ends reattached. Chromosome eight has about 150 million genetic letters and Ben is missing about two million. “There are some places in the genome where you could cut out two million letters and it would have an almost unnoticeable effect,” he told me.

The cause of my son’s genetic condition, Dan said, was random and couldn't be linked to an identifiable cause. And then I read a study showing that the error was more likely to occur in the sperm than the egg, anyway.

Still, there remains a twinge of guilt – or the fear of guilt. Such that 18 years later, as I began writing this story, I sent Dan an e-mail, to ask if any new evidence had emerged to suggest cause.

"No, there's nothing you could do to reduce unequal crossing over,” he wrote back.

And what about the study last month that showed that paternal age is one of many factors that increase the risk of autism? Could age increase the risk of unequal crossing over in Ben’s syndrome?

There’s no evidence to suggest that, he said.

Of course D’Arcy wasn’t an older father at the time – he was 34.

Do you see how circuitous these ‘why’ searches become?

I can remember conversations D'Arcy and I had early on, where I would repeatedly recount what the MotherRisk clinic had told me about Prozac. "Three per cent of all babies are born with birth defects, and studies show that Prozac does not increase that risk."

"I told them if there was an increased risk, I wouldn't get pregnant!" I said.

"But all the doctors said the genetic syndrome has nothing to do with the Prozac!" D'Arcy said.

And around and around we went.

For many parents, the hunt for an answer doesn't end with eliminating physical things we did (or didn't do) that could have caused the disability.

When I finally recognized that my son’s syndrome was a chance error during conception I was still left with "why" – but on a larger level. And in some ways, that was a harder one to deal with.

If there’s a predictable reason for something, it gives you a sense of order in the world, a sense of control. Things don’t strike out of the blue. There’s a reason, a certainty – even a justice – about the way the world works.

But no matter how much I ruminated over it, I couldn’t come up with a reason that this random error had happened to us – good people both (I realize that sounds kind of silly, considering that random means there is no rhyme or reason!). My childhood religion held that our spiritual perfection could be manifested on earth through holding certain thoughts. Were my errant thoughts somehow responsible for my son’s disabilities?

Of course there are cultures that believe disabled children are the result of their mother’s sins.

But if there was any truth to that, why was my biological son born with disabilities and not my biological daughter? (I have two adopted children)

I’m a firm believer that life is full of joy and pain and that we learn and grow from all of our experiences. But I don’t believe in a spiteful higher power that apportions out specific losses and gifts to a person (and sometimes it's really hard to tell just what is a loss and what is a gift). So when a man at church one day said to me: “Perhaps God doesn’t want your son to speak. Did you ever consider that?” I had to say no, because that didn’t fit my conception of God. I wasn’t sure what did fit, but I knew it wasn’t that simple.

And then I had to question why it was that I was born with so many advantages in life? Why was I physically and genetically healthy and naturally able to excel at school? Why can I speak effortlessly? It wasn't because I "deserved" it, or did anything special. I was lucky.

A few years ago I read The Black Swan, a book that had a great impact on me. In it, Nassim Taleb argues that humans are wired to give predictable meanings to events AFTER they occur – to come up with simple stories to explain complex things that can’t be understood.

He argues that most of the really big events in history are rare, random and unpredictable. He calls them Black Swans – a reference to the 17th Century notion that “all swans are white.” In Europe, people had only seen white swans. As a result, the idea that swans came in one colour was held as a scientific truth. Until black swans were found in Australia in 1697.

We like to believe that past events will repeat themselves in a predictable, certain way, Taleb argues. If we know why something happened in the past, we can prevent it from happening in the future. We’re very good at looking back retrospectively and saying “that was really obvious” when it wasn’t at all.

“Our minds are wonderful explanation machines, capable of making sense out of almost anything, capable of mounting explanations for all manner of phenomena and generally incapable of accepting the idea of unpredictability,” he writes.

Yup, I thought, when I read that. That describes me perfectly. And in a way it's freeing to know that. The next time I find myself peering down that rabbit hole of "why?" I'll look the other way.

Stepping into a new world

Lucas (above) is one of my favourite visitors at Holland Bloorview. He likes the Shrek character I have in my office. We have a game where I give it to him, he examines it, then throws it as far as possible from his stroller. Then we look at each other, smile and exclaim: "UH OH!" Lucas loves to run. After a few sessions of our throwing game he usually lets his mom know that it's time to go. He wants out of that stroller! Today Lucas' mom writes about the anniversary of an illness that changed Lucas' life. 

Today is the one-year anniversary of a series of events that would change our lives forever.

Our healthy, almost 28-month-old son Lucas had a fever. We weren't too concerned because he had no other symptoms and was acting normal and happy. It was a day later before we decided to take his temperature. Our thermometer needed batteries. While my husband ran across the street to the store, Lucas had a two-to-three minute febrile seizure: his eyes rolled back and his body convulsed.

My husband called 911 and Lucas was rushed by ambulance to our children's hospital. By the time we were discharged four hours later, Lucas was back to his happy self, running around and smiling with his new Thomas the Tank Engine balloon from the hospital gift shop. It was as if nothing had happened.

It was 8 p.m. The doctors warned us that these seizures might happen again, even a few times, in the next couple of years. They said it wasn't abnormal. If Lucas had a seizure again, we were to wait a full five minutes before calling 911. Like this episode, they said, it would probably just pass.

We weren't too alarmed because my husband had suffered febrile seizures as a toddler. We went home, but Lucas' fever persisted—even with Tylenol and ice packs on his head and body.

At 3 a.m. Lucas seized again. I knew something was REALLY wrong. We called 911 right away. This time the hospital staff treated Lucas' condition as a crisis. He was attached to numerous contraptions. I felt my heart drop into my gut, fearing what the outcome would be. His second seizure only lasted about four minutes but he continued to have milder seizures for about 40 minutes. 

Would our son come out of this? Would he have cerebral palsy? A girl in my grade school had a brain aneurysm and was left with cerebral palsy. We had gone out of our way to do everything "right" with Lucas. How could this be happening to us? "This better not be punishment for you laughing at that Internet Special Olympics joke” I whispered to my husband. Then later, “Is earlier today the last time we’re going to see that adorable little guy as we know him?!” 

I couldn’t even fathom the thought that all the fun we had had with Lucas and all of the rituals we had created could be erased just like that. I ended up face down on the floor balling. I thought this was a natural reaction. It perplexed me that staff rushed to ask if I was ok or needed anything, as if my behaviour was unusual.

One year has passed. Our son suffered severe brain inflammation, cause unknown. The initial MRI was normal, but the spinal tap showed increased pressure. Four days later a still seizure led to another MRI which showed the vicious attack on his brain. We spent three weeks at SickKids and three months at Holland Bloorview in rehab. Within a week of treatment at SickKids, Lucas seemed almost back to normal —seeing again, running and playing. But he had what we would later learn were autistic behaviours and wasn't talking.

It’s interesting how all logic goes out the window with such emotional stress. Even in the intensive-care unit, when he was on a breathing tube, I was expecting we’d be going home in the next few days—once Lucas was up again. I never considered that he wouldn't make a full recovery. I wouldn’t allow the EEG research team to keep the electrodes on his head beyond the initial required observation for their study because I fully expected Lucas to wake up and try to yank everything off his head. Lucas has always been a full-on restless protester; a free spirit; a great communicator of his distress with a loud, piercing cry. Now he was groggy from sedation.

When admitted to Holland Bloorview, I remember thinking it was unforgivable that there wasn’t a better psychological debriefing team to prepare new families like us for the kids with complex disabilities we’d see there. People who came to visit all made reference to the dismal predicaments the other patients were in. 

But that wasn’t us. We were "in recovery." In every update with doctors at SickKids, the focus was on Lucas' recovery, and preferably a full recovery. There was never a discussion of potential disabilities.

I felt guilty when my energetic toddler ran past wheelchairs occupied by the absent faces of kids having active seizures. I assumed they had permanent, neurologically devastating conditions. Lucas’ condition wasn’t permanent, and it wasn't devastating.

It was such a strange range of emotions to process: anguish at what we were going through along with gratitude and relief for what we hadn’t lost. We could see that things could have been so much worse. I was given some copies of BLOOM, but they sat on a desk in Lucas' room, unread. It didn't even cross my mind to glance through them. After all, Lucas was not a child with a disability. I did yearn to connect with other inpatient parents. But I was scared to ask their story for fear that they'd envy ours.

It took so many months for the reality of Lucas' situation to sink in. The first whack to our puffy cloud of naïveté happened at a team meeting before discharge, when the "A" word was dropped nonchalantly. I quickly called out: "Are you saying that Lucas might have autism?" Yes, was the answer. Sometimes brain injuries can cause autism. The autism team came to see Lucas, but his behaviour and attention were too erratic to assess. They said they'd see him again in six months, when his brain settled.

Lucas’ brain had a lot of healing to do the doctors said. His autistic behaviour was part of the process of healing, and it may or may not be permanent. Every case is different, we were told, and only time will tell.

The next dose of reality came at our six-month discharge follow-up. "Is it reasonable to hope for a full recovery?" I asked. Lucas, now three, was at about the level of an 18-month old. The answer was less than enthusiastic. "Hope, yes. I always tell parents to expect the worst, hope for the best and usually it's somewhere in between." 

In June Lucas was given a tentative diagnosis of autism. We were told he wasn't merely delayed. He's not like a typical 18-month-old, he's different.

Finally at the epilepsy follow-up clinic at SickKids the doctor said: "Chances for full recovery are slim; but they're there." I think I went into a daze then, which included crying at the drop of a hat to anything and everything related to Lucas.

It took some processing to realize that I had never allowed myself to accept the possibility that Lucas might not fully recover. It brought back all of the grief I never processed last fall. I had cried from time to time, but things were too chaotic to stop and absorb what had happened. Lucas was on high doses of steroids, screaming and fighting the IV, terrified because his sight had not yet fully returned. The focus was entirely on Lucas. So now, months later, I finally had a chance to grieve the Lucas we knew and had lost. 

From time to time I watched old videos of Lucas—especially the ones in which he spoke a lot—and my heart ached. Sometimes my husband and I remember things Lucas said last summer, before the brain inflammation, that were so cute or funny. Like when the waiter brought him water I requested at a restaurant and Lucas said "That's perfect!" After the brain inflammation he didn't remember our home or his favourite place—my parents' house. "Go Nanny's house now!" he was requesting every day the two weeks prior to his illness.

It feels devastating. I feel like I know what it's like to lose a child, even though he didn't die. Maybe that's insulting to say to those who have lost loved ones, but in a sense things changed forever and I grieve that loss. So what I mean is that I can at least begin to relate to what that might feel like. As a result, while at SickKids I pledged that no matter the outcome, "Every day we have with Lucas is the best day in the world!"

At my Mommy group for our kids' third birthday party, one of the mommies lovingly brought a group photo from last summer. Although I treasured it, my reaction surprised me. I couldn't stop crying for the rest of the party. I knew it would be hard seeing where the other three-year-olds were at—so different from Lucas—but I didn't expect to be so emotionally fragile. But being vulnerable and having emotion is what allows us to have strength.

Although I finally allowed myself to feel loss, I have continued to be hard on myself for feeling down at all! After all, Lucas' unique personality is exactly the same as it was before, down to the tiniest quirk. So we don’t really feel we miss anything from before or that we lost Lucas because Lucas is still Lucas, the same person, just with some new qualities that have made our life more complicated. This experience has also made us appreciate the time we have with Lucas more and value his spirited personality, rather than finding it challenging as we used to. We never thought we would miss Lucas' wailing, and now it’s back! It really just feels like we lost about a year of memories, but as kids get older they forget it all anyways.

It does, though, feel like all of our “work” beforehand—the interactions, the love and care, and time together—got washed away like a big reset button was hit. That feels so unfair. 

But I don’t think we get hung up on the idea that Lucas is intrinsically different in a negative way; it’s not very constructive. Rather, we believe that we lost some experiences that we had together, and it hurts that he doesn’t remember, but we’ve built up a lot since then. And he has continued to recover, albeit slowly.

His speech and language have continued to improve (although he's still saying single words, far shy of where he was last summer). He's started asking us for things and interacting more. He is an absolute joy to be around, from his fussiest meltdown moments to his blissful, loving ones.

In the therapies we've discovered, in the people we've met, in the services we've stumbled upon, in the financial assistance we've managed to obtain, we truly have experienced an enormous amount of good fortune along our new path that evolved from that fork in the road a year ago.

My new journey as a mother has been to recognize my place in the world of disability. Lucas is due to start at a special needs nursery school next week. We are part of the world of autism. And my eyes have been opened by the pages of BLOOM. I relate to everything I read in the magazine and on this blog, no matter what the degree of disability. I always knew my son was special. I treated him as special from the get-go. He wasn't like other babies then, and he is not like other three-year-olds now. And he likely won't be "normal" going forward.

I will continue to be an advocate for his benefit. I will learn from all of you other parents faced with challenges in raising your children with special needs. You are my heroes.

What I once saw as misery, dismal predicaments and disability has been vastly altered. Now I am learning that disability is difference but doesn’t have to mean misery. As Canadian Olympian Silken Laumann pointed out in the last issue of BLOOM, “Life is not just about achieving." That really hit me. 

I now understand that in every body is a real person with valid emotions and most importantly awareness, even if the person can't express things the way others can, and that this is what makes compassion and empathetic connections so essential. This awareness is lacking in the “real world." I only hope I can be a source of strength and support to other parents of children who acquire disability through their own unexpected fork in the road.

You can follow Lucas' recovery here.

Tuesday, September 4, 2012

Yes to synthetic happiness!

"Natural happiness is what we get when we get what we wanted, and synthetic happiness is what we make when we don’t get what we wanted."

Interesting Ted Talk by Harvard psychologist Dan Gilbert, author of Stumbling on Happiness.