Emilie's world tour unites children with disabilities

Emilie, 9 (centre), is travelling the world from her home of Lyon, France to meet children with disabilities, learn about their experiences and break social isolation. Emilie has cerebral palsy.

Most recently she and her mother Agnès spent three weeks in Peru. During this time they lived with three families: one had a child with Down syndrome, one had a child with autism and one had a child with cerebral palsy.

"We followed their everyday life, [rehabilitation] and school and shared ideas to improve quality of life," says Agnès Rairoux, Emilie's mother. "It was a fascinating and positive experience."

The family has started an association called Handiworld where you can watch a video clip of Emilie explaining her world tour.

We hope they may make a visit to Holland Bloorview during a trip to Canada!

Read More

One moment, forever changed

Sofia Ali remembers her brother Malik as a “really athletic four-year-old, enthusiastic about learning and the best brother I could ever have. Then everything collapsed.” Malik went in for a 15-minute surgery to remove his tonsils, had unexpected complications and suffered a severe brain injury. He spent more than a year in hospital and lost the ability to speak, walk and use his hands.

Almost 10 years later, Sofia writes about that fateful day.

One moment, forever changed
By Sofia Ali

Early one morning a faded black Honda left the garage of a quiet neighbourhood with two parents in the front seats, an anxious young boy and a stubborn little girl in the back. After dropping the girl off at daycare, the boy felt the butterflies in his stomach as they drove to the hospital with the sun glaring in his face, knowing he was in for a surgery. 

Surgery: a big word for a four year old. As they drew closer and closer to the hospital, he felt his raucous nerves start again. His parents, attempting to ease his nerves, tried to reassure him. There was nothing to be afraid of, they said, a simple 15 minute tonsil surgery.

But he sensed their uneasiness, when walking up the steps to the hospital, during the formal checkup and finally, when he was about to leave. In fact, the roles were reversed. He was the one comforting them, pecking them both on the lips and waving as he said a final “I love you,” disappearing behind a set of double doors.

The sun rose in the East and set in the West. A child was born and an adult died. Daycare began at 8:45 and ended at 6 sharp. These were the insignificant normalities of my life. As a seven year old, routine was my basis. It was within me to expect all the activities and events of the day to be structured by my schedule, to follow my mental guidelines. 

It was bearing this in mind that [I] got worried as I took notice of the once soothing, now irritating, ticking of the clock—the seconds, then the minutes, slipping past the hour. My routine had been disrupted. And it was on this forebodingly sweet sunny summer's day that normalities became abnormalities. That my routine changed. My life, my family's life. Transformed. It was Thursday July 15, 2004.

I was surprised at how late it was, then further startled by the [arrival] of my aunt. She picked me up from daycare, precisely 10 minutes late, and the journey to the unknown desitnation began. With the windows open and the sights of downtown Toronto surrounding me, I was temporarily distracted from the questions at the back of my mind.

Where were we going? Where was my brother? Where were my parents? Twenty minutes later, with a looming light brown building emitting a deeply unsettling feeling, those questions returned, stronger than ever. I read the weathered blue sign atop the high-rise building [and realized it was a hospital].

Curiosity took the better part of my mind and I ignored the implications...of the tears making their way down the glistening eyes of my aunt and the sombre tone of the car drive. What an unexpected destination. A hospital of all places, instead of a park playing soccer or swimming at a pool. Nevertheless, the journey continued hand in hand with my aunt. Up the elevators, to floor 2, all the while reading the signs. The last stating in monochromatic font: ICU Intensive Care Unit.

A sea of faces was waiting; crying, weeping in agony at the loss of a child, not in the literal sense, but worse. Malik, my brother, was there physically, beyond the heavy, metal double doors. But mentally, he was aloof. Unintentionally barricaded from the despair on [this] side.

Familiar, yet distant faces took up the majority of the expanse known as the waiting room. It seemed like the world had stopped, work abruptly ended, jobs unnecessary. Children, daily routines, responsibility itself were secondary to the circumstances of the day. Not one face looked up as I walked down the hall, uncertain of what to expect. Not one.

Hypoxic brain injury, they said. It was uncalled for, a mistake, a tragedy. But that did not matter to me at the time. I just wanted to see my brother. It felt like a bullet being shot direclty between the eyes with a loud boom, a ball being hurled at the face and landing with a thud. Momentary shock followed by excruciating pain and silence. It was written across the faces of the congregation of people—neighbours, family and friends—there to privately mourn their loss until I realized, too late maybe, that it was my loss, too.

The tears streaming down their faces were a raging thunderstorm. I sensed confusion, disbelief. It was looking directly at my parents that brought the greatest emptiness. My father, a man I once imagined could never cry, was doing exactly that. Helpless, uncontrollable sobbing. His active, playful four-year-old son suffering from hypoxic brain injury. How could it be?

And my mother, my dear mother. It looked as if her tears were gone. She had cried them all out and away they went. She was simply staring at the same insipid spot on the wall, numb and melancholic. Until a tearful spasm erupted, once again. Walking into that waiting room was like walking into a bottomless pit, tormented by emotions of hopelessness, remorse and sadness, then realizing you were going nowhere. That you had no final destination.

It was dreadful. The memory is hard to conjure. In fact, I think I purposefully hide all remnants of that day.

I remember hearing conversations among the [multitude] of people in the waiting room: some sitting on couches, others on the floor.

“Doctors say only 24 hours,” I heard one lady say. And from then on, it was a waiting game. Twenty-four hours for what? Was it a deadline? I stayed at the hospital late, later than my bedtime, which I'm ashamed to admit I might have been excited about. Most of that time spent in the arms of my mother, the unexpected shivers of her body still worn on mine long after I left.

I woke up the next morning in a house that was not mine, with my brother not by my side and my parents not in the bedroom next door. My routine had been shattered. 

I should have been excited about having a sleepover at a friend's house, relishing the change of events. But I was grieving. Not only for Malik, I am sad to say, but for normality. I wanted to wake up every morning knowing my brother was in the room across from me, already awake, watching morning cartoons. Knowing that my mom was downstairs in the kitchen making us breakfast and that my dad was by her side. Was I wrong to desire the past of a day ago?

Twenty-four hours passed and another 24 hours with still limited formal understanding on my part of the condition Malik was in. I take it my parents were trying to shelter me from a world I did not know, that of bland walls, needles and sickness. My questions did not receive response and only made them more depressed. I don't think I was fully able to comprehend the extent of the situation I was in. It felt like someone had snatched him away, taken him for good, yet when entering the hospital for those short visits I could still feel his undying presence. He was still there.

The event. It changed me. As a seven year old, I [would] probably describe my brother as annoying, boyish and annoying. I didn't realize what life would be like without him. Without him playing. Without him laughing. I missed the cute sound of his voice and his unconditional love. I missed the fact that he would not be there every day I came home from school, not be there when I was watching television or reading a book. His presence and his aura of childish happiness, I missed.

At the time, I thought that was the end, that my dear brother would be confined to the four walls of his hospital room for life. With the emptiness that had been carved into my family, all senses of hope were gone. Hope, optimism became non-existent and that was our great fault. 

[Throughout] our suffering, our perspective of life changed and our view on the value of the smallest moments, the tiniest memories, reversed. We have learnt to cherish the things we once believed were insignificant. A simple kiss on the cheek, a warm hug. In that [time], our bonds as a family were challenged, our abilities to endure the random, uncharacteristic events of life tested.

My brother is still with us today. He is 12 years old, three months and eight days. He lives in our townhouse with my mom, dad, younger sister and, of course, me. 

He can talk. He cannot walk. He can sit, on a wheelchair. He can eat, with some help. He can drink, with a straw. He can understand the everyday happenings of life to the fullest. 

He can laugh, he can joke. He can scream, he can cry. He can watch TV, he can listen to stories. Abilities that we take for granted daily are dreams come true for him. One would think the events that took place when he was only four years old would have an everlasting effect on his morale, his mentality. But that is not true.

He is not the same little boy who walked cheerfully into that surgery room reassuring his parents "Don't worry, I'll be back in 15 minutes." He is better.

Read More

Dear Compassion

I just returned from a moving workshop at Mount Sinai Hospital called Postcards from the Edge: Addressing Compassion Fatigue in Note Form. 

It was given by Ronna Bloom, the poet in residence at Mount Sinai.

The focus was compassion fatigue, the natural stress that arises in health workers caring for, and wanting to help, someone who is suffering or traumatized. 

Ronna described it as "the cost of caring for others in emotional pain, exposure to traumatic events or hearing clients talking about their trauma, and witnessing suffering without being able to improve the circumstances."

Symptoms include re-experiencing patient trauma; avoiding reminders of it; and emotional numbing.

She described empathy as the cornerstone of good care: "Opening our hearts and minds to patients." But it is this openness that also makes health workers vulnerable to compassion fatigue.

Ronna said that writing poems can be a way for professionals to "support, express, or dump what they are carrying, or to cradle or hold it." There is something about the process of writing our experience down on paper that may allow us to carry it in a different way.

This struck me as relevant to parent caregivers of children with disabilities.

Ronna had us do some writing prompts, but began by giving us these five brilliant rules:

1. Don't think
2. Keep your hand moving
3. Don't censor
4. You are free to write the worst crap possible
5. You don't have to share

I think the most important are number 1—don't think—and number 3—don't censor. Of course knowing that you don't have to share what you write frees you up to write in this way.

One of the exercises involved writing "towards someone or something, a concept."

It could be "Dear Next Patient" or "An Open Letter to Compassion." This was an opportunity to "respond to our world without sharing."

I found this to be very therapeutic. By focusing on feeling (and silencing critical thought) I put something down that helped me see more clearly how I felt.

Some participants shared their writing and the emotion felt by these health professionals as they described their caring work was palpable. "A sense of helplessness is at the core of compassion fatigue," noted one participant. 

I think these techniques can be useful for parents and hope to learn more about them.

In the meantime, I'll remember that if I feel heavy with emotion or angst, writing freely about it can release it from where it's being tightly held within my body, and allow me to see it in a new way.

This workshop was offered through the Health, Arts & Humanities program at the University of Toronto.

Read More

I loved it

Read More

Sideswiped

By Louise Kinross

"Is he mentally retarded?" she asks.

I am holding my 19-month-old son in my arms at a visit to a dental clinic in a children's hospital.

I've been up all night giving Ben Ventolin masks for his asthma, and I'm still reeling from her previous questions, asked in a most pitiful tone.

"Will he ever walk?"

"Is he short for his age?"

This student—training to be a pediatric dentist—knows that kids with Ben's genetic condition can have missing, fused or oddly-shaped teeth.

But once she begins grilling me on my baby's height, ability to walk and mental faculties, my fears about Ben's teeth—about the possibility of him needing to wear full dentures as a kid—evaporate.

I am stunned. How is this related to his teeth?

"No," I say in reference to the mental retardation.

"Oh, well, I guess you wouldn't know that yet anyway!" she offers with a perky smile, as if to say: "You better not get your hopes up lady, and just who do you think you're kidding, anyway?"

I feel like I've been dropped into traffic on an eight-lane highway.

We've seen dozens of specialists about Ben's genetic deletion and I've got my head around the likely ways in which Ben will be affected. I've found a place where I can be okay with some kind of mild learning disability (no, not "mental retardation" or intellectual disability). I don't yet realize how challenging it will be to get Ben to walk and the degree to which his growth will be stunted. 

But now all of those "safe" parameters I've held in my vision of Ben's future have been ripped away. Warm saliva pools in my mouth. My heart pounds and something is pressing against my chest. The walls of my chest are caving in.

Today was to be a simple visit to talk about Ben's teeth (he only has a couple). I was expecting a quick look in his mouth, maybe some x-rays.

Instead, she takes it upon herself to conduct a detailed medical history using the most stigmatizing and value-laden language.

After taking x-rays she tells me that Ben does indeed have "adult" teeth buried in his gums, and there's no need for any intervention at this point (or for dentures!).

I maintain my pleasant demeanour and thank her profusely and make my way down into the dark, concrete belly of the hospital—where fear and grief and rage take hold.

I am terrorized. I shake. 

I cry all the way home.

I spend the rest of the day trying to convince myself that my bright, sociable, loving little boy is not "mentally retarded."

How could this most terrible of stigmas befall my beloved son?

When I was in grade school I was the kid who aced tests, scored a few grades ahead on standardized testing, and made up a "game" that involved timing which student could read book passages faster. 

My Dad—a great proponent of the value of education—liked to quiz me on where my friends "stood" in the class.

By the time I got to university, there was no separation between "me" and "my marks." Without my marks, there was no me. Once I dropped a university course at the halfway point because I realized I was only going to get a B. In my world, if you couldn't get an A, it wasn't worth doing.

I don't call anyone because I fear uttering the words "mental retardation." It's as if speaking the words could make them true. I need to maintain the iron-clad story that Ben is cognitively normal—a story I still believe to be true aside from the anxiety that this dentist has stirred up.

I must protect my son against the judgment of others.

How dare this uppity dentist imply that my son is "mentally retarded" when she knows nothing about him?

A month ago Ben had a developmental assessment and we were told he was "fine cognitively."

At one year, his pediatrician said "he doesn't appear to have global developmental delay."

"There is no way this child has mental retardation," says my therapist, a family doctor who's observed Ben during my weekly counselling sessions for a year. Ben comes with me and sits in his car seat, babbling and playing with his Sesame St. characters.

I rail against the dentist.

D'Arcy is working the late shift and I call to tell him about the visit, but somehow the words lose their sting in translation. He responds in his usual way, which is to deny that there could be any validity to these prognoses.

"Louise, that's ridiculous. We know that's not true. Now don't get yourself all worked up about this."

I put Ben to bed and pace around the house. 

I'm starting to learn that my usual modus operandi—calling friends to share what I'm going through with Ben—doesn't help. 

Many don't have kids, and those who do know nothing about having a child who is different. They tend to minimize what I'm going through or tell me how sorry they are.

I've always cared too much about what other people think. Now I often choose to sit in the dark and let these terrors about my child run their course.

But not tonight. I give in and call my good friend. I want her to tell me that there is no way on God's earth that Ben has "mental retardation." I want her to tell me that this dentist is crazy.

Just whose side is she on, anyway?

"Oh Weezie," my friend says genuinely. "That must have been terrible."

But she doesn't offer an opinion on Ben's intelligence.

Does she think Ben is "mentally retarded?" I don't dare ask.

My friend begins to tell me about a work colleague who met a mother and her baby with Down syndrome. They were in a waiting room, and the friend began talking in baby talk—gooing and gaaing—with the baby. 

The mother, thinking she was in some way denigrating her daughter, took offence, giving her the evil eye and taking the baby away.

I can't make out the point of this story, but I'm suddenly aware that for my friend and her colleague, who don't have children, the notion of a "mentally retarded" child is an interesting topic of discussion at lunch. It's about as far away from reality as Mars.

And I say as much. "This is just a philosophical discussion for you. This is happening to me, this is something I'm going through, this is about my son who I love more than anything in the world."

And my friend says: "Louise, this is happening to me too. I am going through this with you."

And I tell her "No, you're not." And I start to cry. And I hang up.

And then I scream. And it turns into sobs, big heavy, heaving, sobs.

And I walk up and down the stairs. 

And I wonder what Ken, our neighbour on the other side of the semi-detached wall, is thinking. And what is happening to the picture of the happy little family we've been presenting to the neighbourhood.

What am I going to do? What am I going to do?

Read More

Sitting in judgment

In October, New Jersey State Supreme Court Justice Helen E. Hoens (right) stepped down, saying she developed the qualities essential in a judge by raising her son Charlie (left), who has severe autism. Here she writes about how living in the ‘margin-world of autism’ prepared her for seven years on the bench.

By Helen E. Hoens

The New Jersey Supreme Court is the highest appellate court in the state. Once we decide an issue, there are no more appeals and nobody to overrule us. The game, as they say, is over, except for the rare case when the United States Supreme Court thinks it needs to weigh in on the subject. That happened precisely once during my seven years as a justice.

Not only does our court have the final say for the folks whose cases we hear, but our decision ends the dispute for everyone else in New Jersey. That’s nearly nine million lives instantly affected by whatever we write. But it’s even bigger than that, because although we’re only one of 50 states in the U.S., history has proven time and again that once we decide an issue, other states follow our lead.

Pretty weighty responsibility, this business of being a justice. For me, it capped off nearly a decade and a half of service as a judge in our trial and appellate courts and nearly as much time earlier in my career practising law.

The story of how I was chosen to serve as a justice, when there were maybe 70,000 lawyers in the state who might have been picked instead, is a pretty interesting tale. But it’s not nearly as interesting as how I managed to pull off that feat while being Charlie’s Mom.

Because that is who I am.

Not Helen Hoens, the noted trial lawyer and mediator. Not Judge Hoens, the respected Superior Court Judge presiding over trials in cases ranging from medical malpractice to land use and defective building construction to contests over guardianships and estates. Not even Justice Hoens, the acknowledged expert in complex areas of law, prolific writer, popular lecturer and gifted speaker.

In the end, all I am is Charlie’s Mom.

Charlie is nearly 30 now, safely ensconced in a group home and working in an adult program. Today, as a grown-up, he’s happy. He loves his home, and why wouldn’t he? He goes cross-country skiing, enjoys trips to the beach, sees movies, works out at a gym. Oh, sure, there are household chores and there’s work during the day. Sometimes it’s cleaning the movie theatre or helping to make jewelry that gets sold in real stores; sometimes it’s recycling or shredding.

We see Charlie frequently and that ranges from short visits to his house or taking him out to dinner to extended vacations and cruises (he likes the endless food and side trips on little boats to the beach). As a mother, I am immensely joyful that my son is so happy and it gives me great peace to know that he’s also safe and well-cared for.

Charlie is completely non-verbal and has only rudimentary communication skills. But he’s a pretty cool guy, or so they tell me, and he has a pretty cool life.

It wasn’t always that way. For all of us, his dad included, it’s been a long, tough journey, full of dark days and sleepless nights, punctuated with bouts of aggression. That’s such a polite word, “aggression.” But the English language doesn’t have a word, at least that I know of, to describe what my son was like for much of his growing-up years.

Think of a son who grew bigger and stronger than I will ever be, given over to some irresistible demonic urge, laying in wait until Dad was in the shower or mowing the lawn, only then to erupt into a brutal, rage-fuelled, full-on attack on me, and me alone. I lost track of the number of bruises, the handfuls of hair ripped from my scalp, the trips to the hospital ER. How I survived it is a story for another time.

Because although that is part of being Charlie’s Mom, although it was impossible to understand and terrifying to endure, it pales when compared to what it was like trying to deal with the way that other people in the world reacted to autism. But in the end it was coming to grips with the way the world deals with folks like my son that prepared me for being a justice of the New Jersey Supreme Court.

I did not grow up knowing much about autism, but I certainly grew up knowing that there were plenty of other folks who weren’t as lucky as I was. Folks without jobs, folks without homes, folks with physical challenges, folks with mental illness. They were everywhere, if you took the time to look, and all of them were people who deserved to be treated with dignity and respect, to be helped if you could, by reaching out, helping, giving and sharing.

That’s why, as a teenager, I did hundreds, maybe thousands, of hours of volunteer work. I even won a prize for writing an essay about looking beyond somebody’s physical disabilities to see the person inside.

That life ill prepared me for being the mother of a son who was profoundly autistic. Never mind the scarcity of programs and lack of educational opportunities, never mind the fact that autism was little known or little diagnosed back then; the hardest part for me was that I suddenly found myself in a world far different from the one in which I grew up.

The reality was that I had become the mother of one of those “others” who were different. Worse, I found that there weren’t a whole lot of folks who were reaching out, helping, giving and sharing. And being treated with dignity and respect? Not at all.

Instead, I discovered that I lived in a society in which, when people saw my son and me at all, they merely glanced before turning away and hurrying by, as if looking at us too long or too directly might infect them with our misfortune. I lived in a world that consigned both me and my son to its margins. But it is my life there that made me who I am.

And just who am I? When I joined, and more recently when I left, the New Jersey Supreme Court, our newspapers were filled with stories about a long list of qualities that others have said suited me so perfectly for my work on the court, qualities like patience, compassion, strength and courage. But what they didn’t say is that each of those qualities came from living in the margins with my son.

Patience? I learned that sitting with Charlie, endlessly repeating the steps, one at a time, involved in brushing his teeth, or combing his hair, or putting on his underpants front-forward (he never got that one). While other kids master those skills and more almost without being taught, I learned to stay patient as my son crept snail-like toward the ever-elusive goal of being able to do the simplest tasks of daily living.

Compassion? I learned that while wrestling my son to the ground in the grocery store when he flew into a rage because he cannot wait in line, or while tackling him as he tried to grab somebody else’s lunch because ours didn’t arrive quickly enough to suit him. For somebody like me who always thought you had to be a pretty lousy parent to have a kid who shrieked or lunged in public, living with my son taught me to see others with compassionate eyes.

Strength? I learned that when another mother phoned in the middle of the night begging me to use my lawyer skills to get her autistic teenager out of the psychiatric ward and into a non-existent placement in a newly opened residential program, because she knew that in this margin-world of autism, I was pretty much the only one who could. So I summoned up strength and did it. For free.

Courage? I learned that when I saw that the world will always prefer to avoid looking at people who are different, who are needy, who make regular folks uncomfortable. I learned that when I realized that as long as we are willing to remain silent, we will stay there in the margins. Because, truth be told, I have never left that life in the margins.

Maybe that’s why, seven years ago when I took the oath of office and joined New Jersey’s highest court, reaching the stratosphere of my chosen profession, I grabbed the chance and publicly pointed to my son as the person who taught me all the things that others said made me a perfect choice. That took all the courage I had, but they say it opened eyes and changed things, at least for a time, for people with autism and their families in New Jersey.

Life with my son, life in society’s margins, has never been easy. But it is this life with him that made me who I am and paved the way for what I have become.

In the end, it is all that I am.

Charlie’s Mom.

Helen E. Hoens speaks on a variety of topics related to parenting children with disabilities. She can be reached at helenhoens2014@gmail.com. The photo above is by Charles Schwaneberg (Charlie’s dad). Photo below by The Star-Ledger, Newark, NJ.

Read More

What's wrong with wanting a 'mini-me?'

This comment on the blog of a parent stopped me in my tracks (if you read down in the post you'll see the comment reprint in full). 

It’s from a young adult with autism.

She was responding to the parent’s post about hope. 

In it, the young woman with autism encourages parents to hope that with appropriate supports their child will become a happy, fulfilled person. But she asks us to take a really close look at what we are ‘hoping’ for.

Are we hoping for our child to become more like us? More ‘normal?’

“Do you believe that typical behaviour and communication reflect the ‘natural’ conclusion of a universal process of growth?” she writes. “Do you only consider a change to be ‘growth’ if it results in your child acting in a way that you find more relatable or comfortable?

“The reason it is important to ‘presume competence’  is not because all people are capable of displaying ‘competence,’ given enough time and encouragement. 

“We must presume competence as a way of acknowledging that competencies exist independent of our ability to identify and interpret them.”

I take this to mean that just because we parents, in our conventional mindset— in our tendency to frame normalcy as the end goal—cannot see or understand an atypical ability or way of doing something, does not mean it is not there.

She goes on.

“Please, do not presume that all people are capable of social ‘competence’ given sufficient support; instead presume that all people’s sociability is somehow a competent one, even when you do not understand it.

“Please, do not presume that all people could learn to converse ‘competently,’  given sufficient support; instead presume that all people do converse, even when their responses or reactions fall outside of communicative norms.

The writer advocates a kind of hope that presumes the intrinsic value of a person and “acknowledgment of valid difference.”

This is quite different, she suggests, from hoping that your child will eventually more closely fit the 'normal' mold, which she suggests is to want our children to be something other than who they are.

“I am struck by the impossible task that child has been given. Nothing they do or say will mean anything until they are judged to have communicated what they mean. I can say, from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible.”

This hit home for me.

This week I've been working on a project with Ben on silent movies from the 1920s. He adores Charlie Chaplin and his outlandish antics, like when, as a starving prospector in Gold Rush, he cooks up his boot in a pot and eats the leather and even the laces.

Ben can't easily generate his thoughts in writing or sign. He can't tell me in signs why silent movies were so popular, other than to say they are funny. 

If I write out a few scenarios from the Gold Rush movie, he can point to the one he thinks is the most funny: when 'the little fellow' and big Jim sleep through a storm that pushes their cabin so it is hanging off the side of a mountain.

Now that I think about it, he was also able to sign the house and show it tipping precariously over the edge.

He can do a really good Charlie Chaplin imitation, walking like a penguin and twisting a cane.

But while we were working on the project I couldn't help wishing that he could translate the thoughts he has in his head easily into signs or written words, so that I would KNOW exactly what he is thinking.

Because I can see in his animated eyes and engagement with the movie, and how he'll do a bit of a running commentary with signs while watching, that he has lots of thoughts he can't translate fluidly.

But I see from the comment written by the young woman with autism, that wanting a conventional expression of his thoughts is a form of narrow-minded judgment. 

“I can say,” she writes, “from personal experience, that it is impossible to communicate with people if their only response to my language is either to ignore it, or say that it is incomprehensible. Assuming your language is the only possible language and, therefore, the natural end product of human development is just another way of assuming that anything you don't understand doesn't matter (or even exist).”

In wanting our children to be more like us, we are closing doors that would allow us to see them more for who they are. We are in some way invalidating who they are, because we are not open to accepting their form of communication. We have made a value judgment because we can't imagine ways of being—or their benefits—that are foreign to us.

“Any two people who speak different languages must presume the other is trying to communicate, despite their incomprehensibility, in order to start building a third language they can share,” says the young autistic woman.

Indeed! It's a partnership.

Read More

Anne Geddes' lens reflects resilience

Australian photographer Anne Geddes is known for capturing the innocence of babies in bumble-bee and acorn costumes that replicate life in nature.

But her latest project it not about innocence. It’s about resilience.

Geddes is photographing a dozen children and youth from around the world who’ve lost limbs and digits to Meningococcal disease—a deadly bacterial infection that inflames brain and spine tissue and infects the blood.

Geddes says she knew she’d achieved her mission when an eight-year-old boy looked at his photos and said: “For the first time, you made me proud of my amputations.”

Capturing the children’s differences in a way that emphasizes their wholeness was a challenge, Geddes says. “I didn’t want to portray these children in a way that was a shock. I wanted the viewers’ first reaction to be ‘what a gorgeous little girl.’ When you’re with these kids for more than five minutes you just forget that they don’t have legs, or arms, or both.”

To tie the photos together, Geddes chose the theme of birds’ nests.

“I decided to link all of these images in a really subtle way to what a bird’s nest represents,” Geddes says. “Hope and protection and family and new beginnings. And, more importantly, deceptive strength: nests hold their elements and survive even though they look so fragile.”

She describes a particularly magical moment when photographing a boy who initially sat down in the room with his hands behind his back.

“After about five minutes he brought his hands out and climbed on the box and said ‘I’m going to do a yoga pose.’ I ran back to the camera and he did this lotus position and put everything that was ‘wrong’ up front—his toes and his hands—and stared into the camera. It gave me the tingles and my hand was shaking while I was shooting, and then it was over.”

The project aims to raise awareness of the importance of vaccinations and quick medical attention if your child has the symptoms of meningitis: fever, vomiting, headache, a stiff neck, sensitivity to light and drowsiness.

The images also promote the beauty of survivors. “I want this series to transcend time,” Geddes says. “It will be this series of beautiful children who have disabilities, but it doesn’t matter.”

An unexpected benefit is the sense of community it generates for participants. “We were shooting one girl from Spain in the morning and a little fellow from Germany in the afternoon, and they crossed paths at the hotel and apparently she turned to her parents and said: ‘He’s just like me.’ This made me think the series will also get the message out that these children are not alone.”

Viewers will discover subtle elements of birds’ nests in the images—an illustration, a piece of twine tied around the waist or feathers in the hair. The children are from Australia, the United Kingdom, Ireland, Spain, Germany and Canada.

The photos will be published in an e-book on World Meningitis Day April 24. The project, Protecting Our Tomorrows, is funded by Novartis Vaccines and Diagnostics. Bernadette, above, and with her mom below, is one of the participants.

Read More

Taking 'the good' for a spin

I've been reading Hardwiring Happiness, which shows us how we can take in and savour more of the good moments in our lives, retraining our brains which have evolved into a kind of "velcro for the bad," as neuropsychologist Rick Hansen calls it.

“Over the course of evolution, animals that were nervous, driven and clinging were more likely to pass on their genes, and these inclinations are now woven into our DNA," Hansen writes. "Even when you feel relaxed and happy and connected, your brain keeps scanning for potential dangers, disappointments, and interpersonal issues. Then when the least little thing goes wrong or could be trouble, the brain zooms in on it with a kind of tunnel vision...”

Yes, that resonated with me. More often than not I feel a kind of defensive vigilance about my son with disabilities. My mind is usually in a hyped-up worry state about something in the future, now that he’s on the precipice of an uncertain adulthood, or calling up painful memories from the past. Because of his anxiety, which manifests itself in compulsive behaviours, others often see him as “bad” and a “problem.” When these images litter my mind, the base of my skull is taut and tense. I get stuck in futile rumination.

To ensure we're giving our brain equal exposure to the good in our life, Hansen in Hardwiring Happiness advocates these steps:

“Notice a positive experience...such as a physical pleasure, a sense of determination, or feeling close to someone. Or create a positive experience...For example, you could think about things for which you're grateful, bring to mind a friend, or recognize a task you've completed. As much as you can, help ideas like these become emotionally rewarding experiences; otherwise, it's merely positive thinking.

Enrich it. Stay with the positive experience for five to ten seconds or longer. Open to the feelings in it and try to sense it in your body; let it fill your mind. Enjoy it. Gently encourage the experience to be more intense. Find something fresh or novel about it. Recognize how it's personally relevant, how it could nourish or help you, or make a difference in your life. Get those neurons really firing together so they'll wire together.

Absorb it. ...Sense that the experience is sinking into you as you sink into it...Perhaps visualize it sifting down into you like golden dust, or feel it easing you like a soothing balm. Or place it like a jewel in the treasure chest of your heart. Know that the experience is becoming part of you, a resource that you can take with you wherever you go.”

I thought I'd try this, but at first I seemed to come up blank. I mean I could momentarily enjoy something like sitting in a fragrant bubble bath, but when I tried to conjure positive feelings and gratitude for my son with disabilities, it was hard to extinguish the negative feedback that some of his compulsive behaviours have recently generated.

I did in the course of a day experience some warm moments that I made an effort to savour and build on.

One was reading Ben the Geronimo Stilton Kingdom of Fantasy series. He is captivated with the characters and the story and when I read it he'll snuggle right up against me and hang on every word.

Another was his willingness to point to the text in his Kumon reading, word by word, while I said the words out loud. He often doesn't have the focus to do this, and will race his fingers over the lines much too fast for me to read it. Because he can't read the story out loud himself I want him to point to the words as I read them.

He's now downstairs watching Howl's Moving Castle and laughing so hard that he has to take gulps of air. He loves the larger than life characters of this Japanese anime film.

These are the kind of images I want to embed in my mind and call up more often.

But I can see how much of a discipline “taking the good in” is, like learning to meditate, and you have to start small.

This piece in The New York Times Motherlode column reminded me that how we see our situation, and the images we fill our mind with, is always a choice. A mother writes about the perspective she gained when her one-year-old with Down syndrome survived a harrowing seven months in isolation battling leukemia.

“Why should I be sad that my girl did not sit up at so-and-so many months, or walk at a year and a half, or talk soon after?” writes Cristina Nehring, who chronicles her daughter’s illness in Journey to the Edge of the Light. Her daughter “Dice listens, she laughs, she caresses; she seems extremely happy," Nehring writes. “All around us parents mutter about their kids growing up too fast. That is one problem we don’t have. We are taking our bloody good time. And if Dice never talked? We would make accommodations. I have been an oddball all my life too. At least my child would have a medical explanation. We would be oddballs together.”

Yesterday one of my daughters told me she had a funny dream. "We were all in this massive car and Ben was driving," she said. "He was driving really well—fast and dodging obstacles like garbage cans, people and animals.” She moved her arms to mimic steering a wheel. “It was almost like we were in a video game except it was real."

"That's so cool," I said. "I love that dream and Ben would love it too."

For a moment that image of freedom and self-determination for Ben filled my mind and I treasured it. And why shouldn't I? Why shouldn’t I keep calling up special moments when we sit side by side, enjoying a book?

It’s just as easy to rest my brain in all of the problems, the challenges and the worries.

And neither is the whole picture.

Read More