Thursday, September 30, 2010

Follow the leader

Follow the leader
By David Sexton

When my son was first diagnosed with cerebral palsy, and we had an MRI performed and learned the scope of the stroke, I had a hard time concentrating on what the doctor was telling us. I sat in his office holding my wife’s hand and balancing my son on my knee and I tried to focus. My head was a whirlwind though, and it was all I could do not to shut down and stop listening.

“You’ve got to listen and ask, you’ve got to listen and ask,” I kept saying to myself. “For your son, you’ve got to listen and stay cogent.”

I willed myself to attention and watched the doctor’s face the way I sometimes scan the face of an attendant on an airline flight when there’s turbulence; I looked for the signs of trouble that words might not convey.

While I listened, in that hour or so that the neurologist gave us, I heard him say three distinct things:

“This is permanent. This is not degenerative. We don’t know what the long-term impact will be.”

When I heard “...not degenerative,” I think I calmed a little, like I had caught the side of a boat after heavy swimming. I clung to that understanding. I was relieved that, whatever it was that had happened to my son, it was over. Later tests and blood work reinforced this understanding. There was no underlying condition that could make a second stroke likely; there were no accompanying conditions that would make his prognosis worse.

I took great comfort from those words and we set about doing everything we could to assist my son to recover physically.

I suppose at the time, my unequal weighing of the doctor’s message created a set of incompatible beliefs in my head. I somehow felt that the “not degenerative” part of the doctor’s message negated the “permanent” part. That his words would act like self-cancelling components to an algebraic equation. And like I often did in math class in high school, I ignored the “we don’t know” part of the equation all together. It didn’t seem to fit and I wasn’t ready for that.

I suspect this self deception was natural; I needed a way to move ahead and those tougher truths were too much for me at that moment. I was living as one of my literary heroes, Dr. Samuel Johnson, would say, not from day to day, but from hope to hope.

“I can help him now,” I thought. “I couldn’t prevent what happened to him, but now I can make it right.”

To a great degree that misconception has been helpful. The hope that it gave helped me to take a practical approach to my son’s conditions and treatment. We worked (and still work) very hard to make every therapy appointment count and to help him recover.

My son can walk now. He can talk. He can move his left arm, the affected arm, when he thinks about it. These changes mark real progress, and the smiles and confidence I see in his face tell me just how important this progress is. When I see him walk and climb and use the slide at the park, I might as well be watching him fly.

But even as my son has made these strides forward, it’s becoming more clear that when nature touched him with cerebral palsy, it left a mark that would always be a part of him.

“This is permanent. We don’t know what the true impact will be.” These words have come back to me as the immediate dangers have passed, and I’ve only begun to wonder about them.

I think I’ve put off thinking about these words, not only because they were hard to hear, but because they brought home the mystery that the future holds for our son. That no matter how much therapy we do, no matter how much coaching and early education we give him, or how much we include him with his age group in school, my boy is on a different and unknowable path. That as much as I like to feel that I’m clearing the way for him, all I can really do is follow behind him.

Sometimes I find myself doing this following literally.

“Uh oh, Daddy, he’s on the stairs,” my daughter will giggle when her brother breaks past the barricade we put in front of our first to second floor stair case. “There he goes!”

“No way!” I shout from behind as I race to catch up to him – he’s moving pretty quick these days – and prevent an unplanned stumble. “Get back here little man!”

He laughs when I catch him. He looks up at me with a twinkle in his mischievous blue eyes and lets out a terrific little belly laugh.

“No way,” he repeats with delight.

I look in those blue eyes and wonder how different things are for him. I think about the half of his brain that was hit by the stroke and the half that is now free to work as it will. I listen to the numbers and letters he identifies spontaneously from road signs and cereal boxes and wonder what’s in store for him and for us. I think about the songs and stories he’s beginning to memorize and wonder what he will do with his life.

Some of this is ordinary wondering about the future, I know. We all have our riddles, I suppose; the traits and qualities that surface in us seemingly from nowhere. My children will sometimes exhibit a look or a laugh or a peculiar talent or weakness that seems new and inexplicable. When I see this, I imagine lost ancestors before us in the forgotten past whose once familiar qualities are resurfacing. I think these seemingly new qualities are like a flower bulb that has lain dormant in a garden for many years, only to spring up unexpectedly to the owners of a home who never recall having planted it.

But when I think of the doctor’s words, “We don’t know what this will mean,” I know some of what I see in my son can’t be attributed to a distant forefather or mother. Some of these traits that surface now are part of his body’s response to the stroke. His brain forced into use pathways and circuits that would otherwise have remained dormant. The resulting changes and growth of his person are ancient beyond the reach of family memory or even written history; they are the inheritance of ages of human evolution that have made our bodies tough and robust and resilient - even to stroke. I wonder what miraculous traits of humanity are now coming alive in our boy and what they will mean for him.

There is no way to know for sure, but it puzzles me mightily now.

These days, when I find myself trying to riddle these unknowns out, I feel as though I’ve taken up a difficult book that has suddenly become intelligible. That my mind and heart have grown with our struggles and that I am now ready to acknowledge certain truths about the cerebral palsy that I was not ready to accept before. I feel as though we’re out of danger and like a man will sometimes do after a hurricane, I’ve tentatively stepped out and am looking around to see what the great winds and rains have changed in their passing.

I’ve been afraid I think, and the fear is just beginning to pass. I never thought the words “permanent,” or “we don’t know,” would mean anything else but a fearful burden, but this seems to be changing.

“What a mess!” my son says, imitating me again, as he overturns a bucket of toys on the floor in front of him and sets about ordering those same toys into some arrangement of his own imagination.

I watch him play and I can do nothing but smile.

“He’ll make his way,” I think hopefully. “He’ll find a way.”

I’m not ignoring the realities. I know that way won’t be easy. I know he’ll have unexpected struggles ahead and that the world can be a hard place. We still have a long way to go with his therapy. We still have a long way to go to see what help he may need along the way. There will be many tough days I’m sure.

But when I look at my son now and accept both his progress and the ongoing mystery of his condition, I see mostly good in his future; I see his unique and remarkable potential. Whatever the future may hold for him, I expect that he will be able to face it with confidence. What I see mostly now, for my son, is hope.

David is a software development manager in Hoboken, New Jersey who writes about parenting in Scattering Bright. You can read an earlier piece he wrote for BLOOM at Breaking windows with my son. Pictured above is his adorable boy.

Thursday, September 23, 2010

Beauty: It's ours to choose

A part of me was terrified. Was I about to see something now, 14 years after my son’s birth, which I hadn’t seen then?

I’d contacted the genetics clinic at the children’s hospital to ask for a copy of photos that were taken when he was four days old.

That day back in 1994 had been our own little 'D-day' – D for diagnosis. We’d brought Ben to the clinic to see if they could match his unusual facial features with a syndrome. An hour after Ben was born, the hospital pediatrician arrived, unswaddled him and looked at him disapprovingly: "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip,” he said. These were soft signs for mental retardation, he added, though he didn't know what he was dealing with.

Four days later, the geneticist told us she thought he had a greater than 50 per cent chance of having a genetic condition associated with “abnormal facies.” In addition to having blood drawn for chromosome testing, she wanted the hospital photographer to take pictures she could show her colleagues to help them identify other newborns “like Ben.”

We trudged through the huge hospital, melting in our heavy winter coats, passing Ben back and forth in his car seat. They’d given us a paper with a room number on it, but we couldn’t find the room. We got lost in a labyrinth of white corridors with stark fluorescent lights that made my eyes water. Step – pain. Step – pain. My seat throbbed with the raw tears of childbirth and my chest ached with unexpressed milk. I felt dizzy.

I saw an old rotary phone in an empty office and left a quaking voice mail for my therapist: "Hi Jan, it's Louise Kinross calling. Ben was born and they think he has a greater than 50 per cent chance of having a chromosome problem. D'Arcy and I are really struggling and I was hoping you might be able to help us."

We eventually made it to the studio and the photographer was as nice as could be expected.

But I hated the hospital for taking Ben’s photos – face on, side views and shots of his feet, which were apparently extra wrinkly. It felt intrusive, stigmatizing and unnecessary.

And 14 years later it bothered me that the hospital still held these photos and I didn’t.

So I called the genetics counselor and asked for copies.

When I finally had the CD in my hands, I was afraid to pop it in the computer and pull the images up on the screen.

When he was still a newborn, my boy had grown beautiful before my very eyes. His differences dissolved in my sight because I saw his face and being as a whole.

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

But in others' eyes the odd features superseded the boy. In their eyes he was different, an oddity, something "wrong."

Would I only see the clinical defects in the hospital’s photos?

I clicked on the first one (above) and my heart flooded with joy. What I saw was my beautiful, lovable boy, his four-day old eyes gazing right at the camera, his chubby arms, his round, full face. His right ear was cupped, yes – and I recognized the other anomalies – but it wasn’t scary. I saw the spirit and light in his eyes and it drilled a hole of tenderness in my heart, like it had so many times before.

Beauty, I believe, is something we choose to see.

Monday, September 20, 2010

Not so funny

Not so funny
By Amy Julia Becker

I absorb a lot of news every week. We listen to National Public Radio morning and evening. We subscribe to Time, The New Yorker, and the Sunday New York Times. I read a handful of blogs and receive a daily Google update on stories with the key words “Down syndrome.” And usually, when an article or story catches my eye, I write about it. That might be because I appreciate the perspective or information shared, or because I’m saddened or opposed by the view it presents.

But then there are the stories that bother me so much they don’t even seem worth commenting upon. The church that wanted to burn the Koran on September 11th, for instance, left such a bad taste in my mouth that I didn’t even want to mention it. And last year, when the TV show “Family Guy” ran a series of episodes with a character with Down syndrome, I refrained from wading in to the debate it inspired. Then it came to my attention that a song from “Family Guy” had been nominated for an Emmy. The song was called “Down syndrome girl.” It included the following lyrics:

Her kiss is so inviting
and her hugs are so delighting.

And what makes them really nice
is that they’ve got a little spice
Because they’re tighter than a vice
and they go on for an hour.

My boy, between the two of us
we’ll get you on that shorty bus
And then you’re going to take it for a whirl…

Now go impress that…
As of Monday, shoelace-tying
Mega-rocking, pillow-talking
Just a little crooked walking,
Coyly pouting, booby-sprouting,
For some reason always shouting,
Fascinating, captivating,
Happiness and joy creating…
Down syndrome girl!

Even then, I ignored the news. I shrugged my shoulders at a Hollywood establishment that bends over backwards to embrace various forms of political correctness and yet rewards shows and movies that poke fun at people with developmental disabilities (Tropic Thunder is the other glaring recent example). I shook my head as I read the back and forth between the National Down Syndrome Congress and Mr. John Shaffner, CEO of the Academy of Television Arts and Sciences. A group of individuals with Down syndrome requested that the Emmys not broadcast a performance of “Down syndrome girl.” Mr Shaffner responded: “The Television Academy is always sensitive to these types of issues and had already planned not to air this song.” I rolled my eyes at the fact that nominating the song didn’t fall under the category of utterly-insensitive behavior.

Then, in the midst of learning about this accolade for “Down syndrome girl,” and in the midst of my decision not to write about it, my sister had a baby. Her baby has the typical 46 chromosomes, but over the course of her hospital stay, she ended up talking with her nurse about her niece, my daughter Penny, who has Down syndrome. My sister Kate is one of Penny’s favorite people in the world. Whenever they are together, there is laughter. And Kate is the only person who has ever said to me, “I think people with Down syndrome actually have greater value than the rest of us, because there are so few of them.”

When Kate was talking with her nurse about Penny, the nurse said, “It has been many years since I have helped deliver a baby with Down syndrome.” She didn’t spell it all out, but it was obvious to Kate that women who deliver in this hospital, who come from a wealthy and highly-educated community, tend to avail themselves of prenatal testing and terminate their pregnancies if they’ve conceived a child with Down syndrome.

In the same week, I happened upon a research paper by Dr. Brian Skotko of Harvard Medical School. He wrote about the decreasing population of individuals with Down syndrome even though average maternal age has increased in recent years: “For example, in the USA, there would have been a 34 per cent increase in the number of babies born with DS between 1989 and 2005, in the absence of prenatal testing. Instead, there were 15 per cent fewer babies born, representing a 49 per cent decrease between the expected and observed rates.”

I’m not shrugging my shoulders at “Down syndrome girl” anymore, nor at the Emmy nomination for a song that makes fun of my daughter and contributes to devaluing human life. From crass comedians to doctors, from high culture to low, individuals with Down syndrome are considered undesirable by many people in America. There’s a place for protest, for letters to Mr. Shaffner and picketing films and the like. But protests also draw attention to the offense. Tropic Thunder was a blockbuster hit, and after the brouhaha over Family Guy last year, it soared to the top of the most-watched TV list.

The more important response happens on a much more mundane and local level. It happens as Penny goes to school with her typically-developing peers; as she orders her breakfast at the local coffee shop; and as she works hard during swimming lessons to keep her head above water.

Across the nation, individuals with Down syndrome have just returned to school, and many of them are in classrooms with typical peers. I can only hope that relationships of trust, respect, and reciprocity are developing as a result. I can only hope that future comedians, future doctors, future mothers will remember the value of getting to know someone with Down syndrome.

Amy Julia Becker writes about theology, disability, family and culture at Thin Places. She's mother to Penny and William and a recent graduate of the Princeton Theological Seminary.

Sunday, September 19, 2010

Wordless Sunday

Wednesday, September 15, 2010

This and that

I tried to upload a video of our therapeutic clowns here, but it didn't work. Click here and then scroll down to the videos at the bottom. Click on "clowns with child" on the left to see them in action and "clowns together" on the right to hear an interesting interview.
In other news, our very own Amy Julia Becker, who has written a number of BLOOM guest blogs, has a piece on the New York Times' Motherlode blog today about choosing not to test for Down syndrome in the child she's carrying: Why prenatal testing harms as much as it helps.

The October issue of The Atlantic magazine has a fascinating piece about a man diagnosed with autism 67 years ago -- apparently the first known case -- and about the issues facing adults with autism: Autism's first child.

And this disturbing comment was brought to my attention in a story about a lawsuit that could set a precedent in end-of-life decisions. The case alleges that physicians unilaterally went against the stated wishes of a patient and his daughter that he receive "full code" if he went into arrest. The patient was not resuscitated and died.

This comment from a professor of health law about whether end-of-life decisions need to be negotiated with family has ominous overtones for people with disabilities. It suggests a doctor can withhold treatment based on his own definition of a 'meaningful' or compromised life:

“If the patient’s life cannot be saved in a meaningful way and if intervention would deny resources that would benefit other patients . . . then the doctor is justified in clinical judgment to withhold treatment,” says Bernard Dickens, professor emeritus of health law at U of T. “Clinical judgment is not negotiated with patients.”

Monday, September 13, 2010

'He was, simply, there, a part of us'

This weekend I read The Power of the Powerless by Christopher De Vinck.

The title drew my attention because I think our culture promotes a false sense of power – one that hides behind masks of competence and invulnerability.

De Vinck’s book is about the gifts he received from his brother Oliver, who had severe brain damage, was blind and lay on his back in bed until he died at age 32. “Oliver could do absolutely nothing except breathe, sleep, eat, and yet he was responsible for action, love, courage, insight,” De Vinck writes.

The book defies common logic about strength and weakness, ability and disability, and explains the value a person can hold for others, simply by being present, simply by ‘being.’ "Our room was separated from Oliver's room by a single wall," De Vinck writes. "Five inches of wood and plaster divided us from each other during the night. We breathed the same night air as Oliver did, listened to the same wind, and slowly, without our knowing, Oliver created a certain power around us which changed all our lives."

Here’s an excerpt from an op-ed piece by De Vinck that ran in the Wall St. Journal in 1985, and which formed the basis for the later book.

I grew up in the house where my brother was on his back in his bed for thirty-two years, in the same corner of his room, under the same window, beside the same yellow walls. He was blind, mute. His legs were twisted. He didn’t have the strength to lift his head or the intelligence to learn anything.

Oliver was born with severe brain damage which left him and his body in a permanent state of helplessness.

Today I am an English teacher, and each time I introduce my class to the play about Helen Keller, The Miracle Worker, I tell my students the story about Oliver.

One day, during my first year of teaching, I was trying to describe Oliver’s lack of response, how he had been spoon-fed every morsel he ever ate, how he never spoke. A boy in the last row raised his hand said, “Oh, Mr. de Vinck. You mean he was a vegetable.”

I stammered for a few seconds. My family and I fed Oliver. We changed his diapers, hung his clothes and bed linens on the basement line in winter, and spread them out white and clean to dry on the lawn in the summer. I always liked to watch the grasshoppers jump on the pillowcases.

We bathed Oliver, tickled his chest to make him laugh. Sometimes we left the radio on in his room. We pulled the shade down on the window over his bed in the morning to keep the sun from burning his tender skin. We listened to him laugh as we watched television downstairs. We listened to him rock his arms up and down to make the bed squeak. We listened to him cough in the middle of the night.

“Well, I guess you could call him a vegetable. I called him Oliver, my brother. You would have loved him.”

And later in his book De Vinck writes: “My brothers and sisters and I rarely discussed Oliver. He was, simply, there, a part of us...It is difficult to explain the hidden reality which is all around us. The poets know how to peel back what we see every day and expose that hidden beauty or truth.”

Friday, September 10, 2010

Travel success stories

That’s Max and his mom Katharine on their recent trip to Washington. Here’s what Katharine had to say about it:

“Washington was stress-free because it was the MOST accessible place we've ever visited! All buses are accessible, all subway stations have an elevator and all taxis had a trunk big enough for a wheelchair. Even the hop-on, hop-off double-deckers were accessible. And Washington has 19 free museums all in walking/wheeling distance of each other!”

Send us photos of the most accessible holiday you’ve taken so we can spread the word. Let us know where you went and why it worked so well. Don't forget a photo!

Here are some interesting (unrelated) links:

Just Because, a new children's book: 'My big sister Clemmie is my best friend. She can't walk, talk, move around much, cook macaroni, pilot a plane, juggle or do algebra. I don't know why she doesn't do these things. Just because.'

Snap is an annual photo competition by Mencap, a group that represents people with intellectual disabilities in the UK. Check out the 2010 winners.

My twins have different destinies: 'My son is studying to be a rocket scientist. My daughter has epilepsy and her seizures take many forms, including opening the car door on the highway.'

The baby I never expected: Blogger Kelle Hampton shares the birth story of daughter Nella in the October issue of Parents magazine.

Think College: US college options for people with intellectual disabilities.

Happy weekend! :)

Thursday, September 9, 2010

'It's a great blessing, to give hope'

Lee Steel (above) is mother to Eric, 18, who is on the autism spectrum, and Avery, 16. She's also the parent liaison at the Autism Research Unit at SickKids hospital here in Toronto. I interviewed Lee about what she's learned raising a child with autism and what she shares with parents just starting down the road. Lee inspires me with her honesty and passion!

BLOOM: How is Eric affected by autism?

Lee Steel: He reads well, speaks and has always had language, but needed one-to-one support through school. He writes like someone in kindergarten and can't tell time yet, but he has an unbelievable memory: he could list off all the songs on the White Album of the Beatles if you asked him. I worry that he’s lonely. He's repeatedly reaching out for friends but not having that much success. He graduated from high school this past June and will do an extra year of high school next year focused on co-op and gaining job experience. He'd like to go to college and for him college is an extension of high school – another place to be around young people.

BLOOM: When was Eric diagnosed?

Lee Steel: He was diagnosed at 3 ½. His preschool had big concerns about him, but I didn't. I knew something was a little different but I had reasons for everything I saw. When I was told he was on the autism spectrum it was an entire shock. Plus, I didn't know what 'autism' meant. I felt stupid to say: "What's that?" so I went home and called one of his preschool teachers. She drove over a book which had a dismal description of autism. It said these children don't have language, they often have to be institutionalized and they can be self-injurious. In that moment, I went from looking at Eric as this little guy I absolutely celebrated with my whole being, to someone I was frightened of. I was beside myself.

BLOOM: How did your perceptions of Eric change?

Lee Steel: What I heard and felt was: 'you're late getting this diagnosis, the windows are closing, and everything is up to you.' A therapist came to the house and said: "For every minute you're not engaging with him, he's in the autistic world." The ‘autistic world’ reminded me of what I’d read in that book. I remember pushing his stroller down the sidewalk thinking 'I have to talk to him all the time.' I ran out of things to say, so I started reading billboards. He looked round in his stroller and the look on his face said: "What the heck happened to you?" Nothing was fun anymore. I wasn’t just Mommy anymore. Now I felt like I had to be a therapist.

BLOOM: What kind of intervention did Eric have?

Lee Steel: I remember going to a workshop at the Geneva Centre and parents there were talking about second-mortgaging their home to pay for applied behavioural analysis (ABA). At the time if you did ABA you paid for it privately. I remember thinking: "We're renting and we're barely getting by." I got a manual on ABA and a bit of coaching and I hired three neighbours with Special-Services-At-Home funding and we did our own home program six mornings a week. I would put the kids to bed at night and then I'd work on a lesson plan from 9 p.m. till 1 in the morning. I knew I couldn't be the teacher, so a neighbour came in for the morning and we turned our dining room into a little school room.

BLOOM: How did that go?

Lee Steel:
Everything was a blur. I would run to a drop-in centre in the morning with my daughter Avery, who was a baby, then run back to give Eric lunch, run him to junior kindergarten, make supper, and then do it again. I had this brand new baby girl, but I was so fear-driven that even when I was playing with her, on some level I was thinking: What more do I need to be doing for Eric? I didn't enjoy Eric for the longest time. He was more like a project I had to keep working on.

BLOOM: How did you keep the pace up?

Lee Steel: Well, there was only so much of me to go around. I'm a single mom now. I've noticed that 90 per cent of moms of kids with autism have to become the ‘case manager’ or ‘therapist’ and that puts incredible pressure on a marriage. Play isn't play anymore – it's an extension of therapy. So if dads are roughhousing or playing with their child the way they would normally, the mom may feel she has to correct them: 'This is what we need to do.' It's therapy-driven and dad may feel like: 'I don't even know how to play with my child.' In my case, my health gave out. I ended up getting thyroid disease. I wanted to say 'help' but there was no room for looking after my own wellbeing.

BLOOM: How have your views on autism changed over time?

Lee Steel: My journey has been one of moving from fear to hope. When Eric was about 6 I heard a panel of adults with autism speak at the Geneva Centre. There was an extraordinary man – Ralph – who shared what it was like to be autistic and why, for example, eye contact was difficult. He gave me an insider’s view. I went up to him afterwards and asked if I could speak to him again. "You're reframing how I need to look at this – not as a disease I need to eradicate or cure or change in my son, but to understand that there are gifts embedded in this." Ralph came to my home and talked to me and gave me hope. For the next year every Wednesday night we'd talk on the phone. Ralph and I eventually brought a group of adults on the autism spectrum together to give them a voice. The adults created a booklet – In Our Own Words – which is available at Autism Ontario. Meeting all of those adults and seeing the various ways that autism expressed itself was the greatest contributor to my rethinking.

BLOOM: What did you learn?

Lee Steel: When asked ‘what was the single biggest thing parents could have given you?’ unanimously these adults said 'acceptance.' I remember Ralph said: “I've had to wear so many masks in my life because I didn't think anyone would like me for who I was.” That’s tragic. In the past, I'd think about how unaccepting the world is, and that I needed to help Eric ‘fit in’ so he wouldn't be hurt. My priorities have changed. I'd rather spend time educating people about the strengths and challenges of autism than expecting my son and others like him to be the ones who have to do all the changing.

BLOOM: How did you begin working at SickKids?

Lee Steel: About nine years ago I was asked to share a parent perspective at rounds. Dr. Wendy Roberts saw how this perspective would be valuable to parents and professionals, and over time my role expanded into a full-time job.

BLOOM: What do you do?

Lee Steel: I support parents whose children with autism are part of our research studies - as well as any parent who calls looking for information. Many parents have just received their child's diagnosis. They’ll open up to a parent in a totally different way than they do with a professional. I try to get in hope wherever I can. It’s a great blessing, to give hope.

BLOOM: Do you have a related professional background?

Lee Steel: The only perspective I bring to the job is my experience as a parent: 'This is my experience, this is what I've known other parents to do, this is what individuals with autism say they need.' I feel those on the spectrum who can tell us what worked for them and what didn't work for them are a wonderful window into the modifications and accommodations we need. Why do we guess when we can ask?

BLOOM: What do you hope to convey to parents?

Lee Steel: Parents need to know that they're not alone, there is hope and things do change over time. I encourage them to focus on their child as an individual. I ask them: "Before you heard the word 'autism,' how were you celebrating that little boy or girl? How did you see them?" When my son was younger I didn't realize that the child brings his or her own little spark and need to succeed and be their best, whatever that looks like. Rather than constantly working on changing the child, I see it as fanning the flame that exists within them. I want parents to understand that autism is a condition of strengths and challenges, but to emphasize the strengths. At the same time, I don’t want, in any way, to diminish the very real struggles families may be dealing with everyday. I want them to believe in themselves as parents and to know that no one knows their child better than they do. I want them to know that when they love and honour and accept their child, it sets up a positive dynamic in the home for all of their children, for their own health and for their marriage. I want them to get educated about autism so they know what their options are and how to advocate for their child’s needs. I remind them to look after their own health and wellbeing.

BLOOM: What questions do parents ask?

Lee Steel: Often times a child has just been diagnosed and will be on a wait list for intervention for months. The parents are terrified: 'What can we do?' I like to share hope about how much they can do themselves. I tell them to trust their instincts and not underestimate how valuable playing with their child, encouraging social interaction, and having fun, is. I want them to know they are their child's best teacher and will be their child’s advocate for life, while professionals will come and go. It's hard for them to hear that message and really believe in their own ability, because there's so much emphasis on the child's deficits.

BLOOM: What are other common questions?

Lee Steel: They want to know how to advocate for their child in school. And they want to know what the future looks like. They want to know how our lives are now that Eric is almost an adult. When they talk to me they see there's a shift: I understand where they're at – I remember and relate to the challenges and fears – but I'm in a different place now. A place where somehow you just know you have to accept your child.

BLOOM: What have you learned from your children?

Lee Steel: The resilience of Eric and his tenacity to keep trying – even though he knows he's different and struggles – are an inspiration. He's so brave. That's one of the things I admire so much about my son. Then there’s Avery. Her heart is so big because she had to take this backseat to her brother – even though I didn't want her to and no parents want their child to. But it's created this wonderful individual who has this huge heart for differences of all kinds. I can see my daughter making a huge contribution in some capacity and in some way it's because of her experiences with Eric.

BLOOM: What can parents do early on to focus on their child’s strengths?

Lee Steel: We recently did a person-centred planning exercise for Eric. We brought together this group of individuals who love Eric and we talked about his strengths. It was so honouring of the individual and the opposite of what I spent most of my parenting years doing. Eric and Avery were there. It was focused on inclusion, planning for the future and how these people would help see Eric's vision realized in the future. It was about building circles of support around your child and your family. I wished we had done this when he was little and I share that with new parents. There are agencies such as Plan Toronto that help families develop a plan for their child’s future and create circles of support over the years.

Lee co-wrote this information manual on autism for parents. She can be reached at (416) 813-6127.

Saturday, September 4, 2010

Hear my story, help me heal

Several weeks ago, I posted about a new graduate program in Narrative Medicine at Columbia University College of Physicians and Surgeons. I'm delighted and honoured to share with you an interview with Dr. Rita Charon (above), who founded the program and is a professor of Clinical Medicine. Dr. Charon is a general internist with a primary-care practice at New York-Presbyterian Hospital. She took a Ph.D. in English when she realized how central storytelling is to the work of health-care professionals, patients and families. She directs the narrative medicine curriculum for Columbia's medical school and teaches literature, narrative ethics and life-telling. I was fascinated and moved by the depth of her approach. It underscores the importance of what we do here in sharing the joys and challenges of parenting children with disabilities. And it holds such promise for improving care and relationships between parents and professionals. Thank you Rita for sharing this with us! Louise

BLOOM: What is narrative medicine?

Dr. Rita Charon: It’s a form of practice fortified with knowing what to do with stories. It’s 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.

BLOOM: Was there a time when storytelling was more integral to medicine?

Dr. Rita Charon: I’m not a nostalgic person. I don’t look back to the good old days when everything was better. I believe Hippocrates and Chekhov and Freud understood that the doctor must be very skilled at eliciting and respecting and learning from what the patient said. But the healthcare of that time was nowhere near as powerful as ours is. So I hesitate to say ‘we used to know how to do this and we just forgot.’

BLOOM: Why have we moved away from using stories in medicine?

Dr. Rita Charon: It’s not necessarily a matter of mean-spiritedness. I think as healthcare has become more and more specialized, we’ve dropped many of the skills we used to have in common. I’m not expecting the stomach guy to tell me what to do with my heart, however, I do expect them both to know just as much as doctors used to about how to listen to me; how to interpret what I say; how to recognize the feelings I’m having; how to speak kindly to me; how to give information to me in a way I understand it; how to look out for my family or whoever else is involved in my illness; and how to help me make decisions about technical care or ethical issues. These things should be shared by all doctors, but they’re not part of the itsy-bitsy specialized things that they’re supposed to know as specialists, so they don’t learn them.

BLOOM: How much of a foothold does narrative medicine have in medical practice in North America?

Dr. Rita Charon: The ideas in rough outline are not new. Since the ‘70s there have been more and more traditional schools teaching students something about how to talk to patients, how to do interviews, how to build a relationship and about the psychology of illness.

BLOOM: So how have they done?

Dr. Rita Charon: It’s been abysmally unsuccessful. If your doctor is younger than 50 to 60 he or she should have had this training but look around – what do you see?

BLOOM: Why haven’t we made more progress?

Dr. Rita Charon: Because from fairly early on this effort became very narrow. All the medical schools in the U.S. and most in Canada that I know teach a kind of recipe approach: “Call me by name early in the interview; establish eye contact in the first three minutes; treat me with respect.” Here are 10 little rules and if you follow these rules you’ll pass the test. There’s very little taught to do with true contact with a sick person. Then a group of us trained in humanities – in reading, literature and visual arts – came in and said: “There are better ways to do this. The idea is not to have students memorize a script, but rather to let the students experience the fact that each patient has her own unique story to tell and that your task is to be skilled at hearing that and interpreting it.” In the best of circumstances, when medical students got literature medicine courses they were being taught something about how stories work. But even that got derailed because some of my colleagues started having ‘English classes’ in medical school. The material wasn’t connected to patient experience. When I started calling my group narrative medicine in 2000 I thought that’s what it is! I didn’t want to teach literature in medicine. That sounded far away from my little clinic office on the second floor. If I practise narrative medicine, I’m a doctor. The phrase itself showed me there’s a dimension to medicine that has to do with telling and listening to stories. It’s grounded in clinical medicine.

BLOOM: How can narrative medicine benefit parents of children with disabilities and pediatric rehab professionals?

Dr. Rita Charon: The level of loss for some of the kids you see is so high. If you’re the parent of a child with a severe traumatic brain injury who’s lost the ability to speak or walk or think, you’re undergoing bereavement for the child that used to be. Your population of parents and staff need the kind of loving, insightful nourishment that the telling and listening of stories can give them.

BLOOM: When I think of storytelling, I can’t help thinking of time. Is the time needed an obstacle to implementing narrative medicine?

Dr. Rita Charon: We did a study with staff in the pediatric oncology unit at Columbia because we wanted to answer the question you just asked: How long does it take to get some benefits? We set up a series of hour-long writing workshops. We did it in the hospital and staff could come for an hour at lunch or an hour at 10 p.m. at night. We invited all doctors, nurses, social workers and child-life therapists. They had to commit to coming to five sessions and they had to take our research questionnaire at baseline and at the conclusion. We got 19 people who agreed to do that. What would happen is 12 to 15 of us would sit around a table and one or two of us would go as the writing coach. We’d pass around a short writing of some kind – a paragraph from a short story or a short poem. We’d talk about that for a bit and then give a writing prompt, such as: ‘Describe one of your patients from the point of view of their mother;’ or ‘Think of your sickest patient and imagine the best possible future for him or her.’ We would give them five minutes and they would write. Then everyone who wanted to would read aloud what they wrote. The writing coach would always start with comments on the text itself: “I notice you wrote that almost like a prayer” or “that image you use of the child as a butterfly is very meaningful” or “how interesting you left yourself completely out of that picture. Where are you in that picture?” We did this over a number of months and then we did a repeat questionnaire to see if there was a difference.

BLOOM: What did you measure?

Dr. Rita Charon: We measured their levels of experience of stress and what they felt the stress came from. For example, was the stress from the sadness of dying children, the incompetence of colleagues, or the absence of resources? We also used a questionnaire that measures how a person tries to see from other points of view. What we found was there was a statistically significant difference in their ability to see other perspectives after the workshops, which was extraordinary. Some of these people just came three times but overall seeing from another perspective improved enough to reach significance. The perceived stress, from the start of the study to the end, increased, and that reminded us that these workshops are not band-aids. These are not things that make it all better. You might feel worse, because you’re seeing more clearly what is going on. You’re hearing your colleague nurse weep about this young child with a big facial tumor and the mother can no longer recognize her. There’s a lot of weeping in these sessions. One interesting thing was that at the beginning of the study, the doctors and nurses were very different in terms of what they said caused their stress. But by the end, they were very similar. The writing didn’t relieve stress, but it did help the colleagues on the team to get nearer to one another in what they saw as stressful. These methods turn out to be very powerful at team building. In health-care settings there are lots of different professionals and, as you know, they don’t always get along well. When you do writing with them it’s almost like magic because it gets underneath the things that separate them. The doctors aren’t fussing with the chemo and the nurses aren’t fussing with the IV. They’re together looking at the suffering of the patient. When we asked them in a focus group at the end, “What did you think?” they said “We learned things about people we’d been working with for 10 years that we didn’t know. The writing was hard and at the beginning I wanted to tell the story, rather than writing it down. But I learned how important the writing is.”

BLOOM: Why is writing different from telling?

Dr. Rita Charon: It makes it visible. If you tell a story, you tell it, but it disappears – unless you audiotape and transcribe it and then it has words. When we write we give form to what we know. For example, when you write a sentence you have to choose what tense to use in the verb, but you don’t say: “Gee, I want to describe that young kid with the facial tumor, will I do it in the past tense?” It comes to you in a way, in the same way that metaphors and images come to you. My social worker didn’t ‘decide’ she was going to describe her breast-cancer patient as a crocus in early spring, but that’s what she ended up using. When you write it down you capture those deep, otherwise inaccessible ways of experiencing a certain thing. When someone reads aloud what they’ve written I can see not only the plot – the content – but by looking at the form I can see a great deal about where they put themselves in relation to the person they’re writing about. Someone might write in a peculiar tense: “I might have wondered if…” and only then do they understand how deep is their uncertainty, or how afraid they are about what’s to come. We’re starting an archive for medical students so the students can look back at what they’ve written at the end of three or four years and say: “I’ve been writing about death all the way along. But back when I was a first-year student, I thought everything could be cured. Look at this!”

BLOOM: Do you work with professionals and patients together or separately?

Dr. Rita Charon: In the beginning we did it separately. What went on in both of the groups was very moving. The doctors would read aloud to other doctors or nurses of their love and attachment to a patient, their sense of mourning and grief when things went badly, and their amazing joy when things went a little better. In the patient group, patients wrote about the absolute indignity of a bone-marrow transplant or how enraged they were that Medicare wasn’t going to pay for their experimental leukemia drug. It was my colleague who said: “Wouldn’t it be better if we had them together? If anyone should hear about what it’s like to go through a bone-marrow, it’s the doctors. And if anyone should hear the love and attachment doctors have for their patients, it should be the patients. So we put them together (although we don’t put patients with their own doctors).

BLOOM: I’m wondering if narrative medicine could be particularly relevant to pediatric rehab because of the stigma that surrounds disability in our culture. There may be a push to “treat” or “cure” the child with a disability when the child, who’s had the disability since birth, simply wants to be accepted.

Dr. Rita Charon: I think you’re onto something very important. It’s one thing if someone has tuberculosis and they take medicine and get better. A disability is not something that’s going to go away. It’s not like you have to just hurry up and take your pills and wait till this goes away. Your self is a self with this set of conditions. And the writing is a means to discover what that self is. I’ve been writing lately in my own work that the body is the home of the patient. Our body is where we live. Our body is the room we live in. It’s not this vehicle that carries us around during the day. Nor is it a prison. It’s our dwelling place. If I’m the doctor and looking into your ears I have to remember I’m looking into your home. I have to ask permission to come in. And I have to follow the rules of your home.

BLOOM: That’s very interesting because when I think of the body being a dwelling place, I think of something very sacred. And yet in our culture a child with a disability may be seen as being damaged or somehow “less than” others.

Dr. Rita Charon: If a child has a home that’s challenging – maybe it’s hard to get up the front steps – the task becomes not just ‘how am I going to get through the treatment?’ but ‘what is this life now?’ – with the benefits and added understanding of the human condition that I have by virtue of my blindness or deafness or loss of limb.

BLOOM: I imagine the best source of stories for professionals is direct ones from patients and families. But do you also recommend professionals seek out consumer stories more broadly – for example, from a blog?

Dr. Rita Charon: The equivalent of the National Institutes of Health in Italy has created an amazing blogging online community for parents of kids with rare diseases. The parents meet online and disseminate what’s known about these conditions and they’re teaching the pediatricians what it’s all about. I attended a conference last year in Rome where I was the keynote speaker. There were 20 to 30 posters by nurses, doctors and therapists about ways in which ill children or parents they work with had done this writing or video or art. We have a pediatrician on our faculty at Columbia who teaches a course on illness narratives and one on disability narratives. She has her students doing searches all over the Internet: there’s lots of NPR StoryCorps and blogging and YouTube and performance art related to children with illness and disabilities.

Dr. Charon's Narrative Medicine: Honoring the Stories of Illness was published in 2006.