Friday, October 30, 2009

My boy, the ladybug

Last night I spent four hours sewing black fleece spots on a red tuxedo jacket with tails.

Halloween is my son Ben’s favourite holiday of the year. Weeks before, he begins asking everyone, in sign, what they’re going “to be.” You’d think that after all these years I’d be proactive and have his costume ready months in advance.

Instead, I wait till the night before. First I race around the large local thrift store, looking for a bargain. But as time runs out, I inevitably end up in the most expensive costume store.

Ben has been “thinking” about what he wants to be for weeks. He finally settled on a ladybug, like Francis, the aggressive male ladybug in the movie A Bug’s Life who’s frustrated that everyone mistakes him for a female.

Yes, it’s unusual that a 15-year-old boy wants to be a ladybug, but my son is one-of-a-kind.

Like the mother who wrote in the New York Times Motherlode blog this week When a boy wants a tutu, I wondered if I should steer Ben toward a more boy-appropriate costume.

“What about a cockroach?” I asked eagerly, knowing he had his heart set on being a bug. He shook his head vehemently.

When my husband and I finally ended up at the expensive kids costume store, there was, of course, no male ladybug costume to be found. However, there was a bright red tuxedo jacket with tails – the perfect twist on a ladybug costume for my son, I thought. I could stitch the black spots on it.

The jacket was made out of cheap cotton. The price – $80 – was not cheap. We bought it and the store gave us black fleece scraps for the spots. We also bought devil’s wings (which were red and black, and could double as a ladybug’s), a black face mask and antennae with eyes at the top that flash on and off.

At home, D’Arcy cut the ladybug spots out with a razor, and I prepared to sew them on. First I grabbed the large kitchen scissors to cut the tag – which I knew Ben wouldn’t tolerate – out of the collar. I inadvertently cut a hole in the $80 jacket!

Now I not only had a dozen spots to sew on, there was a hole to fix. Did I mention that I am not Martha Stewart and we do not own a sewing machine? Luckily, I remembered a stitch my aunt taught me when I was seven and did delicate embroidery on tea-towels.

This morning, when Ben donned the costume, he was very pleased. The photos we took didn’t materialize in my inbox as planned, so I had to improvise with a Bug’s Life image of Francis above.

Happy Halloween!

Wednesday, October 28, 2009

Laughter is 'a spark of light'

Amateur comedian Lloyd Ravn (left) has raised over $3,500 for Bloorview Kids Rehab through
Laughs for Possibility, a comedy showcase he organizes that features some of Canada’s funniest people. Lloyd’s son Eric (right) has received inpatient and outpatient therapies at Bloorview, as well as attending one of our community nursery schools. In this guest blog, Lloyd explains how Eric’s journey inspired him to enter the world of comedy, and how laughter is an indispensable tool for parents of children with disabilities. I'm grateful to Lloyd for this important reminder! Louise

Laughter is ‘a spark of light’

By Lloyd Ravn

I suppose I’d always considered laughter to be important in the healing process, but hadn’t really thought much about it. Ironically, it was April Fool’s Day four years ago when the therapeutic power of humour was demonstrated to me.

I was giving a eulogy at my father’s funeral on the day that my son Eric turned seven weeks old, and I was sure I wouldn’t get through it without losing my composure.

Remembering a conversation with Dad in which he said that when his time came he didn’t want his funeral to be too serious, I opened with a joke. The tension in the church fell as everyone laughed. That chuckle let me clear my head and get to the end of my speech in one piece. It certainly didn’t take away the pain of knowing that my father wouldn’t see my son grow up, but it helped me get through the next part of my grieving process.

A few months later, my son Eric was identified as having global developmental delay. Doctors were telling my wife Jodi and I things like: “we may never find a cause for his delays” and “we can’t predict if he will ever walk or talk.” We went home to the Maritimes for Christmas, and the laughter that a visit with our family always brings helped us stay grounded so we could use our energy to help Eric with his new therapy regime, rather than focusing too much on the fear of the unknown.

In Eric’s physical and occupational therapy sessions, we pushed him to try things that were exceedingly difficult. As I cheered “you can do it” over and over, I came to the realization that if I was going to ask him to confront a difficult task, I should challenge myself to do something that I found hard. Unlike Eric, I had the luxury of choosing this task, but pushing myself in some way would help me feel a little better about working him so hard. I decided to force myself to try something I’d dreamt about since elementary school, but never really imagined I’d have the courage to do: stand-up comedy.

When I took the stage at a local ‘open-mike’ show, and the audience laughed at the material I’d written, I felt a buzz like I’d never felt before. Making a room full of people laugh was therapeutic for me, and that release once again helped clear my mind so I could get on with the important job I had: helping Eric.

I continued to perform at amateur shows and noticed that people in the audience would approach me afterwards to tell me how much they needed a laugh that night to relieve the stresses in their own life. I loved these reminders that the healing power of comedy is a two-way street: the audience’s laughter gives me the charge I need, and at the same time provides them with an important tension release.

Last year, about two years after I started comedy, Eric was progressing well with his therapies when a dream visit to the Maritimes with his mother and brand-new brother Alex turned into a nightmare. At his grandparents’ cottage in Prince Edward Island, it was clear that something was wrong with Eric. Shortly after arriving at the hospital in Charlottetown, he began to have seizures, which took several doses of medications to control. When he didn’t regain consciousness, he was airlifted to a children’s hospital in Halifax where doctors confirmed that our three-year-old child had suffered a major stroke.

I’ll never forget the moment, late at night, when the neurologist broke the news to us. Everything was suddenly blurry and out-of-focus. I didn’t know if I could deal with what he was saying. Then, as he continued explaining the situation, he found an appropriate opportunity to make a light joke. As I laughed, the fog cleared, and I felt better about facing the challenge ahead. Jodi and I have mentioned that laugh several times – agreeing that the tiny spark of light in that very dark moment helped us both move forward. We’re thankful to the doctor for it.

After that stroke, Eric had to relearn almost everything from scratch, including his gross- and fine-motor skills and expressive communication. When he was well enough to return to Toronto, he spent several months at Bloorview, first as an inpatient, and then in the day program.

Doctors are still trying to figure out a diagnosis to explain Eric’s developmental delays and strokes (plural, because in May of this year he experienced two more major strokes which have put him back at ground zero in terms of his recovery). Dealing with the unknown in Eric’s case has been extremely difficult. It makes it hard for Jodi and I to keep our minds in the present, rather than getting lost in worries about what might come.

Eric’s team at Bloorview recognizes two important things: that Eric’s recovery is dependent on the entire team, including Jodi and I, and that the whole team will benefit from, and be more successful as a result of, the therapeutic value of laughter. Every day, I see therapists, doctors, nurses and other team members sharing a laugh with the kids and families they work with, and I remember that it’s those light moments that help us all keep moving ahead.

If your child is recovering from an illness or injury or dealing with a disability, it's important that you keep those two things in mind. The way you deal with the situation will impact the way your whole family copes, and allowing yourself a little laughter therapy is sure to improve your ability to keep your mind focused on the important task at hand.

I’m not suggesting that everyone take up stand-up comedy, but that you think about what makes you laugh, and try to find opportunities to laugh a little everyday. It’s okay, even important, to laugh at a joke when you’re going through difficult times.

I think the easiest way to keep laughing is to watch and listen to our kids. Children are naturally hilarious because they don’t have the same inhibitions as adults. They’re sure to say or do something funny every day. And they love to make their parents laugh, so taking your cues from them can provide your kids some laughter therapy as well.

If you need a little more in-your-face laughter, treat yourself to an evening out at a live comedy show (there are shows happening in Toronto every night of the week – a quick internet search will help you find one that fits your sense of humour), or a funny movie, or just a few minutes with other adults sharing a laugh over a cup of coffee.

Contrary to popular belief, laughter is not inappropriate in a dark situation, it’s critical. As a parent, your family is depending on you to keep your head in the game, so take advantage of laughter’s power to do just that.

Monday, October 19, 2009

Giving Thomas a voice that's cool

In 2003, Richard Ellenson (left) convinced the City of New York to design two classrooms that would allow his son Thomas (right) and seven other children with disabilities to take part fully in kindergarten at a public Manhattan school. Thomas has cerebral palsy and doesn’t speak or walk.

A year later, frustrated by technology that didn’t support the fluid communication he wanted for his son, Richard sketched a product more in keeping with his creative instincts (he owned an ad agency at the time): it was sleek as a video console, spoke like a kid, with all the right inflections, and had a built-in digital camera.

Three years later, that napkin sketch became the Tango, a device Richard brought to market with a company he founded called Blink Twice. This past summer, Blink Twice merged with DynaVox – the world’s largest maker of augmentative and alternative communication (AAC) products – and Richard became the company’s chief vision officer.

We talked about parenting a child who is non-verbal and why he developed the Tango.

Me: How did you react when you first learned Thomas would never speak?

Richard: When he was about two years old we were at his neurologist. He looked at Tom and said “maybe this child will walk one day.” To me, I was never that athletic and that wasn’t the most important thing. “Will he be able to speak,” I asked? I’ll never forget his words: “I don’t believe speech will be his strong suit.” I talk a lot, so for me that was a very hard thing to hear. At that point in my life, I couldn’t envision other ways of communication.

Me: How did lack of speech affect Thomas?

Richard: If you can’t speak in real time, people tend to not include you in real time. To be really good friends with someone who doesn’t speak verbally, you have to learn an entirely new way of communicating, and not everyone will do that. Tom has good friends, but it’s been harder for him to make them.

Me: What are common misconceptions about children who are non-verbal?

Richard: Parts of the human spirit are universal and parts are idiosyncratic. With most people, we overstate their universality, but with the disabled we focus more than we need to on their differences. They need to prove they’re smart, prove they’re fun, prove that they understand what someone is saying. People talk slower or louder to someone who’s non-verbal and generally assume it will be more work to interact.

All of us want to find the things within us that make us special, but the challenge is more daunting to people with disabilities because others don’t take the time to engage with them. You have to be Stephen Hawking before people will sit up and take notice.

The thing I find most tragic is that we as a society have been unable to find effective inclusionary environments. We haven’t found an appropriate teaching model for children of different abilities, so students with special needs are often excluded from a general curriculum and put in a separate environment. Yet in every high school, one kid is going to go to Harvard and one is going to community college. Their experience is not so different from that of people who are typical or have special needs and yet we don’t make that distinction.

Me: Why were you motivated to design the Tango?

The devices at the time were focused on building sentences. To a guy in advertising, that doesn’t equate to communication. Communication is a much richer notion that involves engaging someone in real time. It involves inflection, prosody, speaking in a language and a voice that people relate to, showing off a sense of coolness, being up to speed on your world. I was an advertising creative director, so unlike those with a more academic bent, I’d always focused on the fact that we’re as affected by image as we are by substance.

For me, what was really important for Tom was the ability to be fluid in communicating and to approximate a pattern that feels familiar to others – to give him a way to be engaging out of the box, to show off his charm and his cleverness, to express his needs, his wants, his likes and dislikes, as quickly as possible. Once that foundation was built, then he could focus on the task of generating sentences and growing relationships. When devices made generative language the first step, I found it was such a large step that most people fall off.

Me: What are the key features of the Tango?

Richard: I think what everyone immediately responds to is that it looks really cool, it has great voices and a built-in camera. It was really important to bring that message to the field of AAC: we need to get cooler. We need to worry not only about what the speaker thinks but what other people think – about what motivates communication. As they say, it takes two to tango.

The Tango has 4,000 phrases that were developed by observing kids and teens and adults in real conversations. Much of what we say in life is repetitive. Typical people have the rhythms of conversations in their ‘database.’ But if you’re non-verbal, most devices require you to create those phrases over and over again. That makes it much harder for others who need to wait to listen.

Me: What advice would you give a parent whose child is non-verbal?

We all get judged before we ever speak a word, so be aware that the same thing is happening to your kid and the bar is higher. Make sure your child has visual cues around them in everything from their clothing to their toys, and that language is easily available to them on whatever communication system they use. If your child doesn’t have something with their favourite baseball team or rock band on it, people will assume they’re not interested in sports or kids activities.

If your child gestures, encourage them to use eye gestures and smiles to connect with people, so people are aware that your child is aware.

Make sure people learn to wait for your child to communicate. Let them know it’s not frustrating for your child to use technology and how much their interest means to your child. Keep it positive.

Evaluate your child’s ability to communicate. Do they use images? Can they use sentences made available to them? Can they generate sentences? Be aware of growth opportunities. You want to stay a step ahead so there’s a window where the child has variety.

Advocate for them to have more than they need – to have the best device available so they can explore and grow when they’re ready. To limit a child to low tech is often to limit their ability to find more within themselves.

But mostly, learn to respect a child’s desire to be a child. No teenager wants to talk with you. No kid wants to tell you about their day at school. Find what they’re interested in, and use that to motivate them.

Me: What changes in Tom did you see once he had the Tango?

Richard: When you have a Tango on your tray, you don’t look disabled, you look cool. Instead of “Oh, you’ve got this big device on your tray,” you’ve changed the conversation to “I’m cool” and kids respond to that. With the Tango, Tom’s expanded his magic bag of communication from a couple of gestures and words to phrases that are really intentional, to stories about his life he uses over and over – as we all do – to sound effects. People absolutely understand more of what Tom is interested in with the Tango. He’s considered one of the most popular kids in school. Tom has a lot of friends on Facebook. So someone will show up at our house and I realize Tom was on Facebook the day before e-mailing “I want to have a play date.”

Me: What was most challenging about developing the Tango?

Richard: The hardest part was walking into a field that evaluates things from an academic perspective and being someone who looks at things from a marketing perspective. The field was about building sentences, when to me it should be about your child building relationships. I saw communication in context. Why will people communicate? What will they want to listen to? How will my kid make friends?

Me: How do you feel knowing you’ve given your son a voice in this way?

Richard: It’s wonderful and humbling. I always felt it was a bit of destiny. I was an advertising person and focused on brand and perceptions, and while the AAC field had great thinkers, they weren’t always thinking about what the experience of AAC was for listeners. For me, every metric for success should be about what listeners are doing, not what speakers are doing.

What are your goals at DynaVox?

My role is to work with the company’s many innovators to re-imagine what the world can be like when it’s full of successful AAC users. We want to build devices that provide not just communication, but the foundation for a change in perceptions. So if a person in a wheelchair with a device has a headline over their head that says ‘This is a difficult life,’ my vision is that the headline becomes: ‘This is an interesting life. This is someone who has insight and fun. This is someone worth knowing.’

Thomas and his family were the focus of a 2004 New York Times Magazine article – The Lessons of Classroom 506 – about inclusion.

Friday, October 16, 2009

No man's land

Elizabeth Aquino (left) is a Los Angeles writer and a fierce advocate for her daughter Sophie (right), who she writes about on her blog: A moon, worn as if it had been a shell. In this essay, she recalls the moment when she recognized that neurologists and science had no practical answers for treating her baby’s severe seizures. At the time, she lived in New York. The essay appeared in the Dec. 2008 online issue of Exceptional Parent Magazine. Thank you Elizabeth!
No man’s land
By Elizabeth Aquino

Fourteen years ago, when my daughter Sophie was diagnosed with a severe seizure disorder of unknown origin, I didn’t own a computer. When the doctor explained what was wrong with Sophie, I listened carefully but didn’t even take notes. I’m a smart, organized person and I trusted that she would tell me everything I needed to know.

“You shouldn’t really read anything about infantile spasms,” she advised. “It’s all very depressing.”

One day after leaving the hospital, I made my way to the Barnes and Noble on Broadway and 84th Street. It was a spectacularly new and huge bookstore and had already squeezed out the more intimate and beloved independent booksellers in my neighbourhood. But the immensity of the store, coupled with the bright lights and gleaming escalators, were reassuring. Surely I would find some answers in these slick stacks of newness.

I made my way to the children’s health section and promptly fell upon a book entitled “Seizures and Epilepsy in Childhood” by Dr. John Freeman. I flipped to the index and read “infantile spasms, page 108.” I turned to page 108 and crouched down on the gray carpeting to read.

“Only 10 to 20 percent of children with infantile spasms will have normal mental function; the vast majority will have moderate to severe mental retardation. This is the only (emphasis theirs) seizure type where one can predict such a poor outlook.”

I reread the lines, this time with my finger tracing the words. My lips moved, repeating the sentences over and over. A woman excused herself and reached around me for a book about colic. On the other side of the bookshelf, toddlers raced around their strollers and nannies, city babies at play. I swallowed and continued reading, the letters black and pulsating, a perverse seduction. This was knowledge.

About six months later, Sophie has already been on six drugs. Her seizures continue unabated and her development has plateaued. She’s nine-months-old and spends most of her day moaning. A new doctor assures us it’s plain irritability. A “side effect,” he says, “that you’ll have to figure out your tolerance for.” He recommends a new drug not yet approved by the FDA but available by fax through a pharmacy in London.

“Wow,” I think, “Europeans are always so much more sophisticated. We’ll try it.”

He writes us a prescription and gives us the fax number for the pharmacy in London. I imagine a small place on a cobble-stoned street, where the pharmacist still mixes drugs. I’m in Atlanta with Sophie, visiting my parents for the Christmas holidays.

The London pharmacy sends me the drug in individual foil packets. Each packet is a single dose, but for an adult. I have to gently shake the contents onto the counter and split it in half with a knife. It doesn’t seem so accurate, so I use a credit card, wielding it like the cocaine users I watched in college. The amount I give her could fit in a quarter teaspoon, fine white granules that appear smaller than sugar or salt. I lick my finger and place it in the powder and then gingerly on my tongue. It’s incredibly bitter so I spit it out. I have never been a drug user so am fascinated that such a minuscule amount can actually stop seizures. We add the drug to Sophie’s other two, a cocktail of the non-FDA-approved. And then we wait to see if it’ll work.

On the third night, Sophie doesn’t sleep. Screaming, she flails her hands and arches her back. She’s a wreck. It goes on all night for several nights. Sometimes, she quiets unexpectedly and collapses, exhausted, in her crib. I go downstairs and walk into the dimly lit living room where my mother sits, shadowed, in an armchair. She has insomnia. I kneel down next to her, lay my head in her lap and weep. She brushes the hair back from my face and says nothing.

When the wailing begins again, I climb the stairs and go to Sophie. I pick her up and walk with her, clutched to my chest but unable to cry anymore. I whisper into her ear and to the air around us, “Enough. This is enough. We will stop this.”

The next morning, I call the neurologist back in New York. I tell him that Sophie has been acting psychotic (if a baby can act psychotic). I tell him that her seizures have not shown any improvement, that she screams for most of the night, and that she appears very uncomfortable. The neurologist says little.

“Do you think that maybe the two drugs that are not FDA-approved are interacting with each other?” I say. “I mean, how many babies do you know on that particular combination?”

There’s silence. I picture the neurologist with his hand on his chin, stroking it like my third-grade math teacher Mrs. St. Andre did when she was thinking.

“Hmmm,” he says, “that’s a very interesting idea.”

For a second, I can’t breathe. His voice has travelled two thousand miles into my ear but his words are black blocks in a cartoon bubble in front of me.

I think, Shit. I have a good idea. I have a bachelor’s degree in English and French literature and he’s a neurologist, but I have a good idea. Shit. We are in no man’s land.
That moment I realized with stunning clarity that we were on our own in the care of our daughter and that no amount of scientific knowledge or experience would serve as comfort. In the space of a sentence, I felt I was shoulder to shoulder with the great minds of neurology. It felt like a crap shoot, and the only power I had was to stop.

I stopped that drug and began weaning it from Sophie’s body that day. I began to look and listen for alternatives and eventually found my way to an osteopath in southern California who worked primarily with brain-injured children. We would continue to work with neurologists over the years, open to new drugs and willing to try treatments, but I would never regain a sense of trust that the land we were traversing was known to anyone.

Today, when I get on my computer and 'google' any term I want, I am far from the frightened reader in the Barnes and Noble on Broadway. The words are plucked from some no man’s land and assemble themselves on the screen in front of me. For a while I pretend that I have a bit more knowledge than before and that it’s so accessible, right at my fingertips.

Thursday, October 8, 2009

The good doctor

My previous post described our harrowing experience with the first pediatrician who examined our son an hour after he was born. Thankfully, we had another very different experience with a doctor who assessed Ben when he was three days old.

The story continues the night Ben was born...

The doctor thought it was a chromosome problem, but he didn't know what, and when pushed by D'Arcy, he said Ben had a 50 per cent chance of having brain damage.

How could we figure out what Ben needed? Could he see a geneticist?

There was nothing to be done that night, the doctor said. He’d be back in the morning.

From 3:30 to 6 a.m. we tried to get Ben to latch on to breastfeed (he had an unusually small mouth and receding chin) but despite guidance from a lactation nurse, we weren't successful.

We bottle-fed him and D'Arcy collapsed on a cot. I held Ben and sang him "happy birthday" – something I had planned, but not with tears streaming down my face.

The doctor returned with a furrowed brow and a list of seven things that were "wrong" with Ben. In addition to his facial anomalies, he had a larger-than-usual liver and undescended testicles.

They kept him a night to monitor his breathing and then the doctor said "you can take him home," explaining that as it was Sunday, a geneticist at a nearby children's hospital wasn’t available to assess him.

"What about his breathing?" I asked, reminding the doctor that he was born with irregular breathing and had had some dusky spells.

“If he has trouble breathing, just drive him over to SickKids' emergency department.”

SickKids was at least a 15-minute drive from our house.

“How will we get him in to see a geneticist?”

The doctor was leaving on a ski trip, he said, but if I called the hospital maternity ward first thing Monday morning, the clerk would make the referral.

We took Ben home and he slept in his car seat – like a china doll – propped up in our bed between the two of us. At 8 the next morning I called the ward, only to be told that a physician had to make the referral and they knew nothing about it.

Our midwife encouraged me to call a different pediatrician – a Dr. Till Davy. I reached the nurse at his office and read off the shopping list of "defects" the doctor had given me.

A few minutes later a man with a precise, staccato-like voice came on the line and introduced himself – in an Austrian accent – as Dr. Davy. He had a soothing, melodic way of speaking that made you feel he was genuinely interested in what you had to say.

"Our son was born on the weekend," I began.

"Congratulations!" boomed the voice on the other end.

Had Dr. Davy pressed the wrong line?

"Could you be so kind as to bring Benjamin in at 5 p.m. today?" he asked.

At 5, a tall man in a white coat with a meticulously-groomed haircut and beard enthusiastically reached out to shake our hands and congratulate us. Even his stethoscope – clasped by a small stuffed koala bear with magnetic arms – was friendly and lighthearted.

Dr. Davy picked Ben up like he was holding a priceless vase, and laid him on the examining table. For the longest time, he just looked Ben closely in the eyes – admiring what he obviously considered to be a mysterious and sacred new life.

Ben gazed back.

Then he began to physically examine Ben, poking and prodding him, peering into his ears and eyes and tapping on different parts of his body. The hospital doctor had touched Ben impassively – like a machinist turning over a defective product. Dr. Davy delighted in him as a most intricate, fascinating puzzle.

Ben's eyes locked on him as his sing-song voice flitted from an intimate whisper in Ben's ear to a hearty laugh and a light blowing on his tummy.

Dr. Davy quickly ruled out any problem with his liver. Ditto that he had a cleft lip and palate that needed surgical repair.

Finally, his verdict: "I think he has a syndrome," he said in his lyrical voice, his eyes still fixed with reverence on Ben’s. There was no judgment in his words, no devaluing or disapproval, simply an estimation of the way things were.

He faxed the referral to the geneticist.

In those moments – which added up to exactly two hours passed closing time – Dr. Davy gave us our son back.

I hugged him.

Tuesday, October 6, 2009

How could my son's birth be 'wrong?'

They are words that will be seared in your memory – as fresh and raw as the day you first heard them.

When you learn your newborn has a disability or health problem, the words a doctor uses to share the news can build you up or tear you down.

"He has anti-mongoloid eyes, low-set ears and a bit of a hare lip," the doctor told us. He was obviously annoyed at being called out at that time of night and he didn’t like what he saw.

Ben – the sacred being that had grown in my body like a new limb – lay naked under the stark, fluorescent light. The doctor had unswaddled him and was inspecting him, piece by piece.

I hadn’t noticed anything unusual about Ben’s eyes. I had always loved the metaphor of the eyes being windows to the soul. I knew that mongoloid was an archaic term for Down syndrome. What on earth did ‘anti-mongoloid eyes’ mean?

“In Down syndrome, the eyes slant up,” he said. “Your son’s eyes slant down.”

He said our son had "something like a cleft palate," shook his head and muttered: "the timing wasn't right."

How could my son’s birth be wrong? My jubilation – a brilliant, burning fire – was now flickering in the wind of a competing grief.

The doctor said these were soft signs for mental retardation, though he didn't know what he was dealing with.

Sensing our mounting anxiety, he made an attempt at a joke. "Did you hear the story about the doctor who comes to examine a newborn, sees the baby's mongoloid eyes and tells the mother that the baby has Down syndrome? Then the father comes into the room and the doctor realizes he's Chinese – ha, ha, ha!”

My boy was only an hour old.

Research shows that mothers remember the first words a doctor uses to describe a baby’s disability or medical condition – and the way it’s communicated – decades later.

How did your physician communicate the news?

An article published in the journal Pediatrics last week provides guidelines on how doctors should deliver a diagnosis of Down syndrome, based on a literature review of best practices.

I think the guidelines are relevant to any newborn diagnosis.

They include that obstetricians and pediatricians jointly deliver the news, in a private setting, with both parents together, and provide accurate, up-to-date information. That includes reading resources and local support group contacts.

Most important, the researchers recommend that doctors:

-Begin the conversation with positive words, such as congratulating the parents on the birth of their child (this may sound like common-sense, but we didn’t hear the word congratulations from a health professional for days. Instead, they darted in and out with their eyes down).

-Use nonjudgmental language, avoiding words that convey pity (“I’m so sorry”) and tragedy (“Unfortunately, I have some bad news” or “I know this might seem like a devastating loss.”). It’s “unnecessary and not always reflective of mothers’ emotional states,” the researchers say. Further, conversations should not involve unsolicited personal opinions.

The article notes that in a 2007 survey of 2,500 medical school deans, students and residency directors, 81 per cent of medical students report they don’t get clinical training about people with intellectual disabilities and 58 per cent of deans say such training is not a high priority.

No wonder sharing this kind of diagnosis with sensitivity is so challenging.

Dr. Brian Skotko, a clinical fellow in genetics at Children’s Hospital Boston, led the 29-member team of health professionals that came up with the recommendations. Dr. Skotko’s research focuses on children with developmental disabilities. He’s co-authored two books related to families of children with Down syndrome and has a sister, Kristen, with Down syndrome. He writes about the study in an article called How to give a diagnosis of Down syndrome.

Thursday, October 1, 2009

Fox or wolf?

I can't imagine how crazy-making it must be for my son to communicate.

He can't speak. He uses sign language, but it's hard for him to manipulate his fingers into the correct positions because his hands are so weak. Most people don't understand sign, so we often have to interpret for him. And then there's the 'Dodo factor' of his parents to contend with, when he's signing something perfectly, but for some bizarre reason we can't make it out.

This happened last night. Ben and I had been checking out computer games on Later in the evening he told me there was another game he wanted to get. This took the form of a sign made over his nose.

I couldn't for the life of me figure out what the sign was. I was guessing all kinds of stupid things - any sign I knew was associated with the nose - like a desperate person playing charades. "Pig?" "Clown?" He continued to shake his head.

Then I asked if he could sign the letter the game started with, and he signed a perfect "F." Then followed the perfect "O" and the perfect "X."

"Fox," I screamed, like a mad person with the winning answer on a game show. "Spy fox!"

I was blown away that Ben was able to sign the letters.

"You wanted the Spy Fox game." He beamed and nodded.

But then I reverted back to my clumsy Dodo stance.

I'd forgotten what the sign for fox was, and I got it mixed up with wolf. So even though Ben had signed a perfect fox (which is the letter F circling your nose - see here), I told him: "Oh, fox, this is the sign for fox," and I made the sign for wolf, which looks like this - pulling your hand out from your nose and into a tip to indicate the wolf's pointy nose.

"Fox," I kept saying, all the while producing an over-the-top wolf sign.

He wasn't able to correct me, and I can only hope that in his mind he was chuckling at his crazy mother.

It wasn't until today, when I looked up the sign for fox online, that it hit me: Ben was signing the perfect fox sign. And there I was, saying wolf. Doh!

Great reading

Here are links to several stories and blog posts that I found particularly interesting.

The first is an article in the UK Times about the importance of disabled characters in children's books. It's written by a dad with a disability and talks about In the Picture, a British campaign to encourage publishers, writers and illustrators to include children with disabilities. This is one of the resulting illustrations!

So Don't! And See What Happens! is a Canadian example that includes Madi - a girl with cerebral palsy who uses a voice-output device. What I love about this book is that it's not about Madi's disability - Madi, her wheelchair and her talking machine are simply part of the story, part of the everyday life that I want my son to see himself in.

Over at Hopeful Parents is a lovely post about accepting our children's journeys - and our own. None of us are is written by Kyra Anderson, who blogs about her 8-year-old son with Asperger syndrome at This Mom.

I found this poem posted by the mom of a 17-year-old with global delays and mental-health issues at Just Me particularly moving: i never made it to dance class.

And Ellen at To the Max shared this powerful Bill of Rights for Parents of Kids with Special Needs.

Cheers, Louise