Friday, September 30, 2011

Under the 'hero's' cape

Two days ago Jennifer Johannesen brought me a copy of her book. It was a shiny paperback called No Ordinary Boy, about her life with son Owen, who had multiple disabilities and died almost a year ago at age 12.

Today, my copy's cover springs open, the pages are dog-eared and there are traces of food and bath water dispersed throughout.

No Ordinary Boy explores themes that will resonate with parents of children with severe disabilities and educate professionals and those who have never lived this reality.

It will enable readers to understand how parents can experience their child as magical, yet struggle with a crushing hopelessness when years of rehab efforts don't yield results and therapists (and a 'you can do it!' culture) don't let up.

"What if I know we'll never get there," she writes of efforts to find a communication system that works for Owen. "What if I'm certain? Who would I dare tell? Who would listen? And who would dare agree? Are we all supposed to die trying? And why do we always have to be working on something? Is 'hope' the only thing that matters?"

We hear about the herculean efforts Jennifer goes to to feed Owen, who is at risk of aspiration, orally: "Food and thickened fluid had to be given slowly and methodically. At the last assessment before I finally threw in the towel, the instruction was to feed 1/4 teaspoon of food every 30 seconds. I calculated how long it would take to feed Owen his recommended calories and fluids: about five hours a day."

Elaborate, drawn-out feeding sessions rule the day, to the point that Jennifer's younger toddler Angus protests when he sees the equipment come out. " that moment, I felt helpless," she writes. "And hopeless. I was frustrated that I couldn't provide for either of my children properly."

There are years of relentless attemps to get Owen -- who is profoundly deaf, unable to use his hands and struggles with uncontrolled movement -- to express himself.

"The discussions always went around and around. I was offered options at every turn but they felt futile. I knew what I was up against. Every year, a new suggestion, a new hope.

When Owen was three: "He can use a voice-output device to communicate."

But he can't hear.

When Owen was four: "He needs to first learn cause-and-effect; learn how to use switches."

Yes, learn. Goals, checklists, spreadsheets, Time of Day/Number of Opportunities/Number of Successes. The expensive adapted toys. The battery-interrupter to adapt regular toys. The computer arranged through the Assistive Devices Program specifically for Owen's training...We tried. We really did.

When Owen was five: "It's okay if he can't hear. He just needs to know that if he pushes the button, someone will respond."

But his caregivers can't hear. I hire only deaf people. They're the only ones who sign well enough. They're the only ones who can offer consistent language input.

When Owen was six: "Then we'll attach a light signal to the switch, so they can see when he wants something."

But Owen can't see it. His head is always craned around, his chair always tilted back.

When Owen was seven. "Then we'll attach a buzzer, so he can feel when he's pushed the button."

It was enough to drive a sane woman mad.

One of the most moving and insightful parts of the book -- to me -- is a letter Jennifer writes to a trusted speech therapist, explaining why she's given up on augmentative communication. "My apparent abandonment of AAC has nothing to do with my acceptance of Owen himself -- it's more about my exhaustion and what I'm seeing as futility," she says. "I do wish he could communicate and I wish I could give that to him -- but at what cost?"

Jennifer connects the goal-setting of rehab professionals to a workplace phenomenon called Fake Work. "Fake, because it creates the illusion of productivity when the activities actually don't contribute to the production of anything real or meaningful....Institutions and therapists like disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! This persistent striving can create an environment where Fake Work is prevalent and even encouraged."

It's painful -- and somewhat humorous -- to read the lengths to which this parent goes to have her son participate (I'm sure our readers will relate). At one of Owen's birthdays, Jennifer hooks up a hairdryer to a switch box so he can 'blow' out his candles by hitting the switch with his foot. Only things don't go as planned!

There are so many places in this book where I said: "Yes. She gets it. She had the same feelings, the same thoughts."

An example is when she visits a segregated school for Owen, the only schooling option she's given.  "I can't describe exactly what was wrong or why throughout the whole tour I was holding back tears" she writes. "...Beyond the buzz, I sensed an environment devoid of connection, authenticity and learning. The place looked like a school but it didn't feel like one; it felt like a facility in which employees looked after disabled kids, more institutional and soulless than any other place Owen and I had been."

And although I've known Jennifer for at least eight years, I wondered: "Why didn't I know?"

To therapists (and I assume even other parents, like me) "I would always wear my shining-hero cape," she writes.

We get the sense that putting on this front of supermom who 'has it all together' is expected of us -- by professionals, family, friends. Certainly we, as parents, don't want people to interpret our lives as tragic. "There's nowhere to go with the reality of hopelessness," Jennifer told me this morning.

Jennifer covers all the bases in her book. She talks about the impact of a child's disability on marriage.

We hear about how she spent her nights ensuring Owen had the continual pressure his body needed to calm itself. "I found a way to keep him tucked into a ball without having to sit up: spooning." This allowed Owen some sleep, but not his mother, who was occupied in a psueudo-game of Twister that left her with chronic pain.

There are surgeries, a baclofen pump implanted to reduce spasticity that's recalled, a meeting with Holland Bloorview's bioethicist about decision-making for someone so vulnerable and dependent.

When Jennifer and her husband choose not to pursue deep-brain stimulation, which is held out as a way of calming Owen's uncontrolled movements, Jennifer feels a sense of exhiliration. "There was nothing left to hold out for, no more straws at which to grasp, no more hope for improvement, no theories to explore, no further experiments, no more trials. Finally, Owen was free to just be."

At the end of the day No Ordinary Boy is a love story --- to Owen, and to brother Angus, to whom the book is dedicated, and to all of us families out here struggling to run what feels like a parenting marathon.

It is candid, thoughtful, philosophical, important. Jennifer weaves her narrative around excerpts from hospital and rehab reports that juxtapose Owen's 'clinical' picture with that of his mother's lens.

You can buy No Ordinary Boy at or borrow it from Holland Bloorview's library (416-425-6220, ext. 3713).

Thursday, September 29, 2011

Education: Is it 'earned' or a right?

On Monday I heard a fascinating CBC interview with Chris Mburu (left), a lawyer with the United Nations Human Rights Agency.

Chris is the focus of a documentary film -- A Small Act -- about how a $15-a-month sponsorship from Swedish teacher Hilde Back enabled him -- a young Kenyan living in a mud house -- to go to school and eventually Harvard. Chris decides to find the stranger who changed his life and creates a scholarship program in her name: The Hilde Back Education Fund. The fund provides scholarships to the brightest students from poor communities in Kenya. A Small Act follows top students in Mukubu Primary School competing for a scholarship.

It's a story about how one small act of generosity can have a ripple effect, changing lives. In the CBC interview, Chris talks about how he calls on scholarship recipients to go back to their communities and 'lift them up' with their own charitable projects.

But as I was listening to this fascinating story, I couldn't help wondering why only the brightest students in poor communities were candidates for scholarships.

The fund says it promotes access to education as a fundamental human right. But apparently that right hinges on intellect -- which many would argue is something a person is born with.

If the fund aims to focus on those who are disadvantaged, why does it only recognize and reward the most exceptional, the students who are most advantaged academically to begin with?

Such a thought would never have entered my mind before I had a son with an intellectual disability. The brightest students 'deserve' to be rewarded with scholarships, I would have thought. But now I wonder how much of being smart is genetic and 'gifted' to someone at birth? Is it true that the most brilliant students are the ones who work the hardest, and have somehow 'earned' their intelligence?

I wonder about the Kenyan students who struggle to learn, despite best efforts?

What about those who have intellectual disabilities? I haven't seen the movie, but I imagine they aren't educated in the same classes as the ones vying for scholarships.

When the scholarship students return to their communities to "lift them up" -- will it just be elite students who benefit? At what point will access to good education be for every Kenyan and every Canadian -- regardless of IQ?

Tuesday, September 27, 2011

School update

Ben continues to enjoy his school. His assistant was away yesterday, so one of ours went in. This is what she had to say:

It was great to see him parade though the high school crowd with a smile on his face and see how proud he was in his body language. I think there is some further adapting that needs to happen for participation in all classes, but I know he is being challenged and enjoys where he is. He enjoys being challenged, independent and participating in class.

And from the principal: It has been quite remarkable to see how Ben has adjusted.

'Perfect' or 'abnormal:' Which one is your baby?

By Louise Kinross

It all began so simply.

I was a couple of months pregnant with my first child. My obstetrician asked if I wanted maternal serum screening. I knew this blood test (called alpha-fetoprotein or AFP for short) detected risk for Down syndrome in a fetus. I also knew it was known for false-positives.

I had never seriously thought about prenatal genetic testing. "Can you ask me again so I can think about it?" I said.

A couple of weeks later I went for routine blood tests and was surprised to see the AFP ticked off on the requisition.

Why hadn't the doctor asked me if I wanted this test?

I was angry.

But I was a healthy 30-year-old woman and I was here at the lab giving blood anyway. What could it hurt?

Two weeks went by and my sister-in-law—a physician—reassured me that if there was a problem I would have heard by now.

The next day I picked up a voice mail from my doctor: “You have an increased risk of having a Down syndrome baby and need to get down to the hospital tomorrow for counselling."

My heart sped up. Was something wrong with my baby?

D'Arcy and I went to the hospital clinic. The genetics counsellor looked fresh out of college, with a large textbook open on her desk. She said I had an elevated level of AFP which gave me a 1 in 200 chance of having a child with Down syndrome, instead of the regular odds of 1 in 400 for a woman my age.

The numbers meant nothing to me.

I could have an amniocentesis to confirm or rule out the diagnosis, the counsellor said—but the procedure came with a 1 in 200 risk of miscarrying the baby.

I had the same odds of having a baby with Down syndrome as losing the baby from the amnio test! I didn't want to lose this baby, which was already moving inside me.

The “counsellor” part of genetics counsellor proved a misnomer. There was no discussion about our values, what parenting meant to us, or how we felt about screening for and aborting a fetus with genetic disabilities. Other than a recounting of the dry statistics, there was no discussion at all.

If I wanted the amnio, I had to have it the next day, the counsellor said; I was at the tail end of when they conducted terminations.

D'Arcy and I wanted this baby.

How would I make a decision? I couldn't make a decision, I told the counsellor.

She gave us two pamphlets. One had a scant, two-paragraph description of Down syndrome on it. It described the condition in stark medical terms, listing one "defect" after another. It ended with an odd sentence about how Down syndrome babies could also be happy and lovable—as if clarification was needed that these children were, in fact, human.

The other—a pink brochure—was about termination. What exactly was it? It was a “mini-labour,” the pamphlet said, making it sound as inconsequential as a manicure. Nowhere on the pamphlet did it describe termination as abortion, and nowhere did it state the method at 16 weeks.

I didn't know it at the time, but there's nothing “mini” about a termination of a four-month-old fetus. The fetus' heartbeat is stopped by injection, regular labour is induced and can go on for hours, and a fully-formed, dead fetus is delivered (parents often have hand and footprints taken as a memento).

When I couldn't make a decision about whether to have the amnio test, the genetics counsellor suggested I speak to an obstetrician who would counsel me.

“Look,” said the grey-haired man in a white coat. “If you have an (amnio-induced) miscarriage you'll be depressed, but then you'll get pregnant again and have a normal baby. But,” he began to squawk, eyes popping and mouth twisting, “if you have a Down syndrome baby, that'll be a burden you live with for the rest of your life!”

I cowered in my chair like a child.

We left the hospital in a vacuum filled by the two-paragraph medical description of Down syndrome, the obstetrician's tirade, and the knowledge that the deadline for the amnio loomed the next day.

I didn't search out more information when we got home. I was full of moral angst and indecision but it didn't seem to be the kind of thing you talked about. Oddly, I didn't jump on the computer and research everything there was to know about Down syndrome.

I had little firsthand experience with disability to draw on. Kids with intellectual disabilities didn't go to neighbourhood schools when I grew up. I remembered Bobby, the oldest of six children in a family that lived on a street behind our house. Bobby had Down syndrome and was dropped off in a station wagon from a sheltered workshop in the afternoon. He always ran, head down, into the house. Even as a child, I sensed that his dropped head signalled something bad, something sad or shameful.

I had been brought up with a sense of the value of all human life and with a wariness of medical intervention.

However, it appeared that this was an outdated way of thinking. My therapist told me she would abort if she was carrying a child with Down syndrome. “Life is hard enough when you have your wits about you,” she said.

Of course at this point I hoped it was all a mistake and I would never be faced with making a decision.

I had the test, not having a clue what I would do if it came back positive.

For the next week, I was gripped with anxiety. I would sit, holding my belly, knowing that at a gut level, the idea of aborting a child with a genetic flaw wasn't compatible with my values. It didn't feel right. Every fibre of my body was opposed to judging the life inside of me as unacceptable and needing to be expelled. If I couldn't accept this baby—a part of me, and entrusted to my protection—how could I accept myself?

But the doctor's voice echoed in my mind: the responsible thing to do was to abort this "burden." I pictured myself walking into the hospital, suitcase in hand, emotions shut down.

My husband D'Arcy said he would support whatever I decided, but mainly he chose to believe that everything would come back fine.

And it did.

We were elated to receive a phone call that the amnio result was in and it was “normal.”

I didn't realize that the amnio, at the time, only tested for a certain number of major genetic conditions. Because the limits of the test hadn't been explained to me, I interpreted the result of normal—which also wasn't explained to me—to mean that my child was normal (whatever that means!). With the full information that the amnio doesn't test for a host of rare genetic conditions, I don't know if I would have taken it.

Having received a clean bill of health from the gold standard of prenatal testing, it was a surprise when we were told shortly after Ben's birth that he had a constellation of symptoms that indicated a chromosome problem.

"But I had a normal amnio?" I questioned. 'How could that be?"

I soon learned that I wasn't the only one with the perception that amniocentesis was infallible. Professionals and lay folk alike were befuddled that I could have both a normal amnio and a child with a genetic condition.

D'Arcy and I had always planned on having at least three children, and we wanted them to be close in age.

When Ben was about seven months old, I began thinking about when I would try to get pregnant again—in the new year, I thought, when Ben was about a year old.

I went to see my family doctor and was surprised when she tried to talk me out of getting pregnant again so soon. I interpreted her response as a negative reflection on Ben: why would we want to take on another child when we already had our hands full with a child with a genetic diagnosis?

That got my back up.

I didn't want Ben's condition to put limits on our dreams. I didn't want to make having another child "conditional” on Ben's progress. That wouldn't be fair to him or to us.

But the thought of pregnancy was now filled with anxiety and trepidation: Would our second child be born with medical problems or disabilities? What if our second child had Langer-Giedion Syndrome?

We were told the likelihood was less than 1 per cent because Ben's genetic deletion was random or spontaneous and not related to a change D'Arcy and I carried. In fact, shortly after Ben's disorder was diagnosed, a genetics counsellor enthused: “You have every chance of having a perfect baby—next time!”

But numbers meant nothing to us.

One day while I was agonizing over this, D'Arcy turned to me and said: "Louise, I love Ben. If we were to have another Ben, I would be ecstatic."

That was a turning point.

I became pregnant again when Ben was 18 months old, at age 31. Amnio wasn't available to moms of my age, but because we already had one child with a genetic condition, it was offered.

To say I was conflicted was an understatement.

The first time around it plagued my pregnancy with fear. Now, as the mother of a dearly loved child with a genetic condition, I couldn't imagine aborting a child with a similar condition. What would that say about the value I placed on my son Ben's life? How would I ever look at Ben again, knowing I had stopped the heartbeat of another fetus like him—because it didn't "measure up."

On the other hand, the fact that we were being offered the testing seemed to imply it was the medically appropriate or responsible thing to do. And an unfortunate corollary of that, which soon entered my mind, was that if we didn't have the testing, people would think we had 'chosen' to have a child with a disability—or that we had somehow caused the disability or failed to prevent it (even though prevention in this case meant eliminating the child): “They already have one child with disabilities. How could they have another?”

It seemed guilt would be my companion, no matter which course of action I took.

As I wrestled with whether to have the test or not, I also tried to predict what it would be like to have two children with disabilities (I've since learned that we're bad at predicting our ability to cope with a situation).

I sobbed to a friend that I didn't think I could handle the emotions of having two children with disabilities -- which I pictured as the grief, fear and anxiety associated with Ben—times 2.

But I believe it was more that I didn't think I could handle the stigma—the self-consciousness of feeling that others were looking at my kids and judging them as less than whole.

One of the greatest sorrows we experienced with Ben was others not delighting in him the way we did. A joy of parenting is seeing your child bring happiness to others: it's painful when people focus on the disability instead and feel sorry for you.

Ironically, the obstetrician who made his bias to terminate clear when I had an amnio with Ben, was the same obstetrician I was sent to for prenatal counselling with my second pregnancy.

When I appeared at his door, he looked up from my chart with annoyance and said: "Why are you here? We don't offer amniocentesis to women at age 31."

His entire demeanor softened, however, when I told him I already had a child with a genetic condition.

He paged through my chart to find the letter from my genetics counsellor outlining Ben's genetic condition and its symptoms.

Suddenly, he understood completely, he said "why you would want to do everything in your power to prevent having another abnormal baby."

We were back in the black and white land of perfect and imperfect babies, normal and abnormal babies.

The obstetrician emphatically supported my having an amniocentesis and I went along with him. I was young and lacked the confidence to do what I felt was right—regardless of what others thought.

The day of the test, I was an emotional wreck. Everything inside of me was screaming "no, no, no"— don’t touch my baby. But my fear of judgment should I not test and give birth to a child with disabilities was greater.

My first amnio with Ben had been painless. When the doctor inserted the long needle into my lower abdomen with Lucy, I felt acute, shooting pain and I struggled to lie still. How had inserting a needle into a pregnant women's stomach while you watched the baby on ultrasound—praying it wouldn’t get hit—become a normal part of pregnancy? It was so unnatural, so foreign. I felt victimized.

Prenatal testing has transformed pregnancy from a time of joy and hope to one of dread. Will your baby pass the test? The focus is on weeding out and eliminating 'wrongful' life. It's based on a belief in the power of technology to eradicate human pain—that life can be emotionally and physically pain-free if we get rid of certain health and disabling conditions. But getting rid of them doesn't mean preventing them, it means eliminating the children who carry them. And can a 'good life' be defined by health and intellect alone?

When Lucy's amnio came back “normal,” we were somewhat relieved, but it didn't quell our anxiety. We had had a normal amnio with Ben. Near the end of the pregnancy, the obstetrician said Lucy wasn't growing properly—she was smaller than expected for her age. I had to go for special high-tech ultrasounds every couple of days at the hospital. I began to fear that like Ben, Lucy had a growth problem. “Could it be a genetic condition,” I asked the obstetrician?

“No,” he said. “You had a normal amnio.”

“Exactly,” I said, reminding him that an amnio didn't detect the genetic deletion in my son.

Photo above is of Ben's feet at three days old. The geneticist thought they were unusually wrinkly and a photo of his feetand his characteristic facial featureswere ordered. Those are D'Arcy's hands holding his feet, and it makes me smile to remember that Ben had already stolen our hearts.

Monday, September 26, 2011

Visit a new parenting resource online!

For the last year I've been seconded to Holland Bloorview's Family Resource Centre to help better integrate BLOOM resources with child disability information in the resource centre.

Holland Bloorview's new online Family Resource Centre brings together parent and professional advice, community resources, Holland Bloorview programs and BLOOM stories organized by topic.

Visit the Family Resource Centre and click on any of these topics under the blue Resource Centre tab at the left:



Growing up



In hospital 


My child has

'My child has...' includes stories and resources about a variety of specific disabilities.

In coming months we plan to set up a parent discussion board where you can share firsthand information and support.

For those who live in the Toronto area, don't forget to drop by the Family Resource Centre on the main floor of Holland Bloorview!

From Monday to Friday, our family support specialists, social worker and parent mentors share resources on a range of child disability topics and Holland Bloorview programs. Just around the corner is the Ronald McDonald playroom, where children aged 2 1/2 and up can have supervised fun while you gather information.

We are hosting an open house on Wednesday November 16 from 3 p.m. to 7 p.m. Meet our parent mentors, family support specialists and library staff and learn about funding, fun and respite resources. For more information or to register, message

If you can't make it to the hospital, Ontario families are encouraged to phone our Warmline with questions at 416-424-3888.

The Family Resource Centre works with families to educate, empower and connect parents.

Parents and staff participated in a working group to develop the online resource centre and Lisa Callahan, our resident website wizard, brought it all to life.

This is the first phase of our online resource centre and we hope to develop the section based on your feedback. So please -- go in, click on the topics and send me your input ( or post it below!

Inclusion: One teacher's experiment

Sheila Dobson (above with son Ben) teaches a class for students with developmental disabilities at Sutton District High School in Ontario. She and colleague Andy Hagerman designed a three-week unit called Inclusive Recreation to bring together four classes for students with disabilities with a regular Grade 11/12 Recreational Leadership class. She shared the challenges and rewards of her first experience with inclusion in this piece from the summer issue of BLOOM. Sheila came to visit me a few months ago and she is the kind of teacher every parent would hope for. Thanks Sheila! Louise

Inclusion: One teacher's experiment
By Sheila Dobson

I started teaching special education two years ago, after being a guidance counsellor for most of my career. I knew very little about inclusion, other than being the parent of a child with autism and the joy and heartache that seem to be part of that territory.

I was looking for ways for my students to get to know students in the mainstream and for the mainstream to get to know my students. It’s not that anyone is unkind to my students, but there’s a barrier: it’s like being on different sides of the glass and not being able to communicate. I was searching for a way to make the glass disappear; for our kids to know each other as peers.

Andy and I designed the unit on Inclusive Recreation with ordinary high school kids in mind. The Grade 11/12 class we partnered with is not remarkable. They’re not gifted or elite athletes. They’re just ordinary kids texting at the back of the class and wondering what they’re doing on the weekend. When we began the unit we talked first about the necessity for honesty—that if they couldn’t ask me the questions they were thinking, or if they felt constrained by using correct language or being ‘nice,’ we probably wouldn’t get far.

We did some exercises to help them identify how they felt about disability and inclusion. I asked what words came to mind when they thought of a person with a disability. They wrote about being sad and afraid. They talked about the randomness of a person’s movements, verbalizations that were unclear and a general lack of understanding. This allowed us to have the honest discussions we needed to have before the students could begin interacting together.

We used a few articles from BLOOM to create some context for them, and we had some discussion about the ‘why’ of inclusion, with the emphasis on everybody benefitting. We did a disability simulation where they had a chance to use wheelchairs or experience certain types of disability, such as navigating the school wearing a blindfold.

Then we plunged them, without warning, into an inclusive situation. We paired them up with our community class students, and we played co-operative games. It was a roaring success. My favourite was amoeba tag. I don’t think I’ll ever forget the sight of one of my students dragging his mainstream partner (who was madly trying to hold up his low-slung jeans) around the gym floor.

In guard tag, teams of six kids of all abilities guard a wheelchair from the person who’s ‘it.’ The object is for ‘it’ to try to tag the student in the wheelchair by reaching through the circle of kids who have linked arms around him or her. It was exciting and everyone enjoyed it. More importantly, it gave the mainstream kids a sense of who we are and allowed them to connect in a powerful ‘us’ as opposed to ‘them’ way. We talked about how we structured the games so that everyone can participate and is safe.

Then each mainstream student was paired with one of my students to design an inclusive recreation experience. They learned about principles of inclusive recreation and the board’s safety guidelines. They came up with a number of activities like basketball, badminton, dancing, cooking and going for a walk together. Finally, they organized and hosted an adapted floor hockey tournament for students with disabilities from our whole board. Our final activity will be a slide-show and evaluation of the experience to help us refine the unit for next year.

The number one benefit I’ve seen for my students is that their world is bigger. Now when we’re walking in the halls, mainstream kids will say “Hi.” They know each other and they connect with each other. For the mainstream students, it was a chance to talk honestly about ability in a general sense: “What is able? What does it mean to be disabled or differently-abled?” I saw their perceptions change so much.

The biggest challenge we had was to help the mainstream students overcome their fear and lack of exposure. Given the chance, our students can and will be inclusive. They want to rise to any challenge. They just need to know how. The cooperative games—where the emphasis was on working together—were awesome. In this unit we were able to create authentic opportunities and scaffold the learning so that everyone was safe and successful.

If I had to offer advice to other teachers, it would be to keep the experiences short—20 to 25 minutes—and to give the students enough time to process and talk about their experiences. Our mainstream students did some cartooning to express how they felt about the disability simulation. Some of my students wrote a letter to their recreation partner to share what they enjoyed.

Overall, it was a great beginning. I’m passionate about making the world bigger for all of our students.


Essential best practices for inclusive schools

Friday, September 23, 2011

Friday wrap-up

It's a wet Friday and I had to pick Ben up at school because he was sick, so he missed the football game (though we did drive by and see the teams lined up wearing all their kit in the pouring rain!)

I wanted to point you to some interesting dialogue on the blogosphere. 

Claire at Life With a Severely Disabled Child wrote a piece about how she doesn't associate her daughter's disabilities with who she is as a person:  

I do not interpret her disabilities as gifts that enhance or make her who she is. Who she is, her identity, is, to me, more about her personality, her little quirks and preferences. Her disabilities, on the other hand, stifle her, stifle who she is. She cannot write for long because it will hurt her arm. She cannot express herself because she can't catch hold of the words. She cannot put together a plan for her life because she is completely dependent on others and can't even think in those terms.

This piece was actually a challenge to Bill at Bad Cripple, and he responded with Identity and Disability, Part II:

...when I see a person with a disability one thought comes to mind—adaptation. How has that person coped and adapted to a physical or cognitive deficit. I do not see limitations but rather a whole set of ways that individual has adapted to his or her circumstances. This is why I am no different from any other person with a disability. We all adapt. When I think of my identity, my disability is a central part of that thought process. However, I do not ever think of myself in relation to bipedal locomotion. I think how can I adapt a given activity to my abilities? If I want to ski I need a sit ski. If I want to kayak I know I need a slightly higher back. I do not think or ever wish I was “normal” so I could kayak or ski like others. Likewise when I see or read about Roy’s daughter I think how does she help her daughter adapt. What is it that she can do? How does she get the most out of her physical body and cognitive ability? Comparing Roy’s daughter to a person with “normal” cognition is as pointless as comparing my wheelchair use to bipedal locomotion. Both Roy’s daughter and myself will come away with the short end of the stick. 

Meanwhile, Heather at The Journey Continues blogs about celebrating the first birthday of son Zack since his death: Finding A Way Through a Year of Firsts:

After the death of a child or even any death in a family, it's hard to ever imagine celebrating anything again. I was the type of mom who loved to decorate for all occasions. I haven't done that since Zack died. I think I've come to realize that those things just aren't as important as they once were. Balloons and banners don't make a holiday special, it is having the ones you love around you, that make the memories of those days. 

Heather goes on to share practical tips on how we can find comfort in remembering the ones we've lost.

And this morning I spoke with Jennifer Johannesen, who many of you know as a BLOOM contributor and mother to the engaging Owen, who died last October.

Jennifer is expecting the first copies of her book No Ordinary Boy, which will be available through Amazon next month. Check out excerpts and stunning photos of Owen in the last year of his life at No Ordinary Boy. And this was a powerful blog Jennifer wrote about the process of writing her book.

Patient Voices on The New York Times has an interesting series of profiles of people talking about living with autism.

Wednesday, September 21, 2011

Good news

Ben has a new supply SNA supporting him at school. I asked him how things were going socially for Ben:

"Socially, the other kids are amazing with him! There are a handful who always say hello, ask for high-fives, and try to get his attention when we walk down the hall. I leave him with the other students from the deaf program in the lunchroom. They have made their own section in the lunchroom and they have always made a welcoming show to Ben when we enter. He sits with them, and I sit at the other end of the lunchroom. I tell him that I'm there, even though he may not see me. Once in a while I will look to see if everything is okay. Each time, he seems to be included with the other students. Having this space away from me gives Ben the opportunity to create his own identity with the other students, and make their own bonds and friendship -- everything that a teenager is all about."

Monday, September 19, 2011

Hate crimes: We have to speak up

A number of bloggers wrote recently about the death of Gemma Hayter (above), a 27-year-old British woman with intellectual disability who was tortured and beaten to death last year by five youth she considered 'friends.'

Disability hate crime begins with verbal abuse

Can the word retard kill? This murder might convince you

Seeds at Schulyer's Monster:

Gemma Hayter's case is a stark reminder that the seeds of societal disregard for persons with developmental disabilities ultimately manifest in abuse, in violence and in death and heartbreak and deep sorrow. If you choose to look, to really SEE, you can follow the line from jokes about "retards" in film and television and the stages of comedy clubs to the young people repeating them on the schoolyards, and you can watch those kids grow into young adults and observe them as they live their lives without empathy or compassion for those who have never had value or humanity in their eyes. Small steps, leading inexorably to a moment where killing a living, thinking, feeling human being might be difficult enough to give them pause, but doing harm to a worthless retard, just for laughs? What's wrong with that? How is the world diminished by a loss like that?

I came across this article written a year ago in the Daily Mail by Katharine Quarmby, the first British journalist to investigate disability-related hate crime. Her book Scapegoat: Why We Are Failing Disabled People was just published:

Cast Adrift, The Lonely Victims of Mate Crimes
By Katharine Quarmby

I became aware of a disturbing pattern four years ago when I was news editor of the magazine Disability Now.

During the previous year – 2006 – eight disabled people were robbed, beaten and brutally killed in a period of just six months, yet each death was seen by police, prosecutors and the media as an isolated incident, a motiveless crime against a vulnerable ¬ victim who couldn’t fight back.

I began to investigate such crimes and discovered that the incidents weren’t isolated and the crimes weren’t motiveless – they were committed out of hatred, rather than because the victims were vulnerable.

Fiona Pilkington killed herself and her daughter Francecca Hardwick after years of abuse from bullies.

There are so many cases: Fiona Pilkington, who killed herself and her disabled daughter Francecca after suffering years of verbal and physical abuse from youths; Christine Lakinski, who collapsed near her own front door but was covered in shaving foam and urinated upon as she lay dying; Brent Martin, who was punched and kicked to death by a gang of youths ‘for sport’, in the words of a prosecutor.

My research, which eventually led to a book, Scapegoat: Why We Are Failing Disabled People, suggests that, although this is a problem with ancient roots, failures in the implementation of modern ‘community care’ policy are also to blame.

The lack of money to fund disabled people’s resettlement was one problem; another was the failure to anticipate the bitter backlash that would ensue. For disabled people had been maliciously stereotyped for at least 2,000 years as either scapegoats, sinners or freaks.

By Victorian times, disabled people were so shunned that many, particularly those with mental health conditions and learning difficulties, were imprisoned in asylums or long-stay hospitals. By the mid-Fifties, the number of disabled people who had been institutionalised had reached a peak of 150,000.

These institutions were, almost without exception, awful places where people with learning difficulties were treated with profound inhumanity.

Then a number of well-publicised scandals in the Sixties brought pressure to bear on the Government to start closing the institutions down.

In 1971, the White Paper, Better Services For The Mentally Handicapped, kick-started the community care initiative, pushing for at least half of those in hospitals to be living in the community by 1990. A similar White Paper, Better Services For The Mentally Ill, was published in 1975 by the Labour Government.

Community care was the right thing to do. But the way in which it was carried out failed the very people it was supposed to help.

Between 1955 and 1975, about 80,000 people left the asylums. But their need for medication, accommodation and support was not met. Community care was done on the cheap.

As early as 1985, a Social Services Select Committee report warned that hospital closures had outrun provision in the community. Even worse, a small number of killings by people with mental health problems sparked a fearful and angry reaction by the general public.

Jean Collins, a campaigner from the charity Values into Action, observed that the closures were characterised by ‘chaos and confusion’.

No one had prepared people with learning difficulties for life outside institutions. They were pauperised too, she said, adding: ‘Many were abandoned in a hostile, fearful society.’

Most were resettled in houses that nobody else wanted, on estates where nobody wanted to live. Many became socially isolated. And it wasn’t long before they were targeted.

Many, particularly people with learning difficulties, were desperate for friendship and were befriended by people who groomed them, robbed them, attacked them and killed them – so-called ‘mate crimes’, a recognised subset of hate crime.

Prejudice against disabled people had only grown stronger because so many had been shut away for centuries. Disability hate crime should have been a tragedy foretold.

But it wasn’t. Such crimes will carry on until we face our own prejudices about disability – and, as a society, start to change.

You may want to follow Quarmby's Disability Hate Crime Network on Facebook.

Today, Bonnie at the Fragile X Files writes about attending Partners in Policymaking, a state program that trains people to advocate for government programs for people with disabilities.

There was a detailed and lengthy account of how people with disabilities have been treated and viewed throughout history. Horrifying stories of torture, abuse, neglect, exploitation, misunderstanding, and disrespect. Nearly every example from history was followed by a recent news story showing us how the very same types of treatment and abuse and misunderstanding occur today.

She begins her blog by describing what is too often the reaction of most of us to these horrors:

You know how when there's a story on the news about a child or a person with a disability being abused or injured or killed, and you tend to turn away or turn it off altogether, because it is just too disturbing and you'd rather not hear it?

It's time to listen and speak up.

Check out this amazing New York Times story and video that follows a young man with autism through a one-year transition program designed to ready him for independence. Above is a poster he designed to illustrate his dream of becoming a famous animator and illustrator and having his own apartment.

Autistic and seeking a place in the adult world

Friday, September 16, 2011

School update

This just in from Sallyanne, who is acting as Ben's special needs assistant:  Ben was invited to the football game next Friday and is very excited about it!

The football game? The school he's going to is known for its athletics.

Alden, one of the school monitors, has taken a liking to him and invited him. Alden also spoke to the captain of the football team who is going to introduce himself to Ben next week and also invite him to watch the game.

We are starting to recognize students and interact with them in the halls.

Ben was talking about the Halloween dance today and remembered that when we went to visit the buddy office yesterday, they were playing video games.

I'm hoping to start a discussion with Ben to see what club he'd like to join.

He is clearly challenged here in a good way and likes school. He is recognizing staff and the school. I no longer have to tell him which way to turn or which classroom -- he knows.

The photo above was taken the day before school started. We went to Cherry Beach. I was a wreck, as I had been all summer, worrying about whether I made the right decision to change Ben's school.

I was told that there was no way this placement could work for Ben. That he would not get the supports he needs and would not be able to interact with the typical students. Such a dire picture of Ben was presented at our first visit to the school that I had to interject with: "He is a human being."

I tried to allay my anxieties by telling myself that even if the school was marginally better than the segregated school, it would be an improvement. I actually have a list posted in my office of all of the reasons why I have to move forward with the school change. Things like "I need to let Ben take risks to grow. We need to give Ben the opportunity to interact in a mainstream setting. Ben may learn more in this setting. We won't know if we don't try."

There were so many times during the summer when I felt -- I can't do this. Perhaps I should just go back to the segregated school. At least he's safe there.

It reminds me of a mom who told me she practically had a nervous breakdown trying to get her daughter's IEP changed. She wasn't asking for much. One of the requests was that her daughter send her an e-mail from school every day, to build on her computer skills.

A colleague asked me the other day -- how did you get Ben into this regular school when they they didn't want him? I remembered that during one of my meetings when I was being told that this was not a possibility for Ben, the board person added: "But if you ask for it, there's nothing I can do."

So I contacted our trustees and superintendent and I asked.

If only I knew that three years ago when Ben was leaving the Metro School for the Deaf -- the best year of school he ever had. Louise

Wednesday, September 14, 2011

Friends in need, friends indeed

Friends in need, friends indeed
By Amy Julia Becker

I have 300 new friends. Well, not really. But last week, a woman who knows I write about having a child with Down syndrome sent me a Facebook message and a friend request. I responded. She then "suggested" approximately 300 new friends, all men and women (but mostly women) with children with Down syndrome.

On one level, these are artificial friendships. I've never met these people. Perhaps one day when I get my act together and attend an NDSS Convention, I'll get to shake their hands (or, more likely, give them a hug). For now, they are just names and faces on a social media network. But if there's one thing I've learned these past five years of having a child with Down syndrome, it's that the connections with other parents are real and lasting and sometimes hard to put into words. I think it might be akin to serving in the military—a common experience of hardship and friendship and transformation that is difficult to explain to those who've never been through basic training.

Last December, I finished writing A Good and Perfect Gift, a memoir about the early years of our daughter Penny's life. Penny (above centre with brother William and sister Marilee) was diagnosed with Down syndrome two hours after she was born, and perhaps the more accurate way to describe the book is as a memoir about how I came to realize that although Penny was not the child I had expected, she was exactly the child I wanted. I used journal entries and photographs and notes from meetings with Penny's various doctors and therapists to construct a narrative of those first few years, and when I handed over the final draft to my agent, I thought the story was complete.

About a week later, she wrote back. "Do you have any friends who have children with Down syndrome? Anyone who supports you? If you do, it seems like you should mention them in the book."

I had been involved in the local Down syndrome society since Penny was three weeks old. Penny and I gathered with a group of other moms with babies (and then toddlers, and now elementary school-aged children) with Down syndrome once a month for coffee and conversation. We've attended picnics and conferences and welcomed new parents and hosted cocktail parties and participated in fundraisers. Moreover, these other parents had become my friends—people I could turn to for phone numbers when I needed a doctor's referral, sure, but also women who got together for lunch and talked about the difficulties of potty training and IEPs, the challenges of being the mother of a child with special needs, and just the normal stuff of parenting and marriage and work. How could I have neglected to include them in my retelling of those early years?

Some of that neglect arose from my own self-centeredness, this strange human desire to believe that my struggles were unusual or exceptional. But I think some of my neglect came because of an absence of conflict. These women didn't say things that were hard to hear. They didn't assume that Penny was sweet and loving all the time just because she had Down syndrome, nor did they assume that she was a burden. They simply walked the road with me—the road of sign language and physical therapy, the road of first words and first steps, the road of worry and delight, of sleepless nights and cuddling. Not only was there an absence of conflict, but there was a presence of acceptance and support. And a sense of connection that was difficult to put into words.

A few weeks ago, I opened an email from a high school classmate. We hadn't spoken to one another since graduation nearly 20 years ago. The subject line said,“A tribute to our son, and it included a video. As I watched, I saw a little boy with Down syndrome. Moreover, I saw blond hair, a goofy smile, floppy limbs, and an adoring older brother. And then I saw my classmate—this boy I remember as a "cool" kid, one who played sports and went to parties I wasn't invited to. But now I saw him as a dad, with his son nestled against his chest and his hand covering his son's back, looking content and proud, looking like a father who would protect and embrace his child for years to come. Then the tears began.

And there it was again, that sense of unspoken and almost unspeakable connection, that sense that even without talking about it, we have shared an experience of grief and fear and worry that has moved towards joy and hope and life. I count him as a new friend too, even though we first met when we were teenagers.

After my agent read a draft of my book, I ended up adding a few scenes to include the women from our local Down syndrome association. I'm certain that I haven't done them justice or fully conveyed the relief I felt as we laughed and cried and enjoyed our children together. And I still struggle to put into words the sense of comfort, support, and connection I feel when I meet other families who have children with disabilities, and when it becomes clear that these families have embraced their children.

My husband once said that meeting other parents of children with Down syndrome often reminds him that he is a member of an exclusive club, and he never even knew he wanted to join. I didn't want to join the club, but now that I'm here, I couldn't be more grateful for all my new friends.

Amy Julia Becker's new memoir is A Good and Perfect Gift: Faith, Expectations and  Little Girl Named Penny.  Amy Julia Becker blogs about faith, family and disability at Thin Places.

Grief: Is it optional?

Following Ezra -- a memoir by Tom Fields-Meyer about raising his son with autism (pictured) -- was released last week, and sparked an interesting discussion on the New York Times' Motherlode parenting blog.

Autism, one parent to another includes a question from a Motherlode reader about Fields-Meyer's assertion that he never grieved for Ezra, and a response from Fields-Meyer.

Tuesday, September 13, 2011

Take the fear out of blood work

Most children are nervous about having blood drawn, but kids with autism can find it particularly worrying and overwhelming.

That's why Autism Speaks today released a Blood Draw Tool Kit for parents, with a companion guide for professionals.

The tool kit includes tips on how to prepare your child, relaxation and distraction strategies, a visual schedule of what happens during a blood draw, 'first-then' boards (see image above), how to write a related social story, and why it's important to bring a reward.

The kit is designed to help children with autism before, during and after blood draws. But I believe parents of all children will benefit from these strategies. Check it out! Louise


Hi -- A few people have let me know that they have tried to post comments but the comments don't come through.

Sometimes if you are sending a long comment, the comment function will 'time out' and you will lose what you tried to submit.

For anyone having trouble posting a comment, please e-mail it to me at and I will post for you.

Thanks! Louise

Monday, September 12, 2011

Kumon, stingrays and latitude/longitude

This weekend Ben fed chopped-up sardines to stingrays at the Metro Zoo -- stingrays that had had their 'stingers' removed.

On Saturday he went to Kumon with his brother Kenold. Since I began Ben on Kumon just before the summer, I have always picked up the books and had him do them at home. That's because this Kumon centre is an extremely busy one. The students do their class work in silence and whispers in the classroom, and the parents sit outside in a waiting room. Because Ben tends to 'vocalize' I wasn't sure if he could be quiet enough. I thought he might be too distracted by the other students or simply refuse to work there. His report cards from last year always said he couldn't concentrate well enough to complete a task and we had certainly seen this at home.

Saturday started off with Ben saying he wasn't going to Kumon. However, he eventually surprised us by going in with Kenold, sitting at a desk, and doing a reading book independently. The woman who runs the program then went through the book and he correctly identified all of the words she asked him. She was thrilled!

D'Arcy and I sat in the waiting room, which was separated by glass -- ASTOUNDED that he was actually working away methodically on his book.

While he often resists doing a book, once he gets into it, he's quite chipper and it's obvious that he enjoys the sense of mastery he gets. He likes to sit at the dining room table while Kenold does his Kumon or the other kids do their homework and be a part of things.

He will sit for 45 minutes, which is unheard of for Ben (unless he's sitting in front of a computer).

It makes me question the last three years at the segregated school, during which he never had homework, until the end of last year, when we insisted on it and something was sent home on an adhoc basis. I see how much repetition my other children need to lay down skills and I'm amazed that for students who are already at a disadvantage -- because they have intellectual and other disabilities -- they're denied this, putting them even further back.

Last night we looked at a handout from Ben's new school on latitude and longitude. D'Arcy had bought a small globe and we tried to simplify the concepts for Ben. I'm sure I learned this at some point, but I had completely forgotten it, and suddenly terms like Western Hemisphere made perfect sense.

Ben may only understand the broad ideas of how the equator and prime meridian split the world into different hemispheres, but I was so excited that he was getting what I consider an education. Why shouldn't he have a general sense of the world and continents and countries and how to pinpoint a location? One of my daughters was studying the same thing, so again, there was a commonality as we sat at the dining room table.

When I was consulting with inclusion expert Cheryl Jorgensen at the University of New Hampshire, she told me that in the U.S. it is law that alternate standards for students who can't grasp the general curriculum must be pulled from that curriculum.

"In the U.S., 'alternate' standards are reduced in depth, breadth and complexity from the 'general' standards but they are supposed to be closely alligned with the general curriculum," she wrote.

"In other words, it's not acceptable to have a student count hair rollers as a math goal! Or count silverware! Now that doesn't mean that all schools and states comply, but that is the law."

According to a 2000 Ontario education ministry document called The Ontario Curriculum Grades 9 to 12/Program Planning and Assessment, "For most exceptional students, the learning expectations will be the same as or similar to the expectations outlined in the relevant curriculum policy documents...For some exceptional students, the expectations in the curriculum policy documents will be modified to meet the student's needs, and a small number of students may require alternative expectations, which are not derived from those in the curriculum policy documents." The latter, known as non-credit bearing 'K' courses include: Creative Arts for Enjoyment and Expression; Culinary Skills; Personal Life Skills; Transit Training and Language and Communication Development.

In Ben's segregated school, there was no course selection as there would be in a regular high school. Instead, students were simply assigned four 'K' courses per semester. I don't believe there is a formal, Ministry 'curriculum' that has been developed for these courses. Instead, teachers put together the curriculum themselves, I assume drawing on a number of special-education resources.

This is problematic for me because the courses are in no way alligned with the general curriculum and are not standardized. I assume that the same 'K' course could look quite different depending on the school and instructor. Louise

Friday, September 9, 2011

Health rationing and quality of life assumptions

An interesting article in the Canadian Medical Association Journal last month looks at how decisions are made about who will be treated during pandemics or when intensive-care resources are limited.

Can rationing possibly be rational?

The article notes that provincial protocols exclude people with developmental disability or certain chronic conditions from accessing a ventilator during a flu pandemic. We've written before about similar U.S. protocols.

Ontario is developing new critical care triage guidelines we'll want to follow over the next few months. Louise

Thursday, September 8, 2011

'He is just my son'

'He is just my son'
By Susan Senator

Nothing is ever what you think it’s going to be. Even if my firstborn son had not been autistic, motherhood was crazy different from anything I had ever experienced or been prepared for. From the moment that my ‘birth plan’ of soft lights, music and foot massage was scrapped in favour of a strong epidural, life with Nat (photo left) was a wild ride.

When I think about myself in those early days, 21 years ago, I feel maternal and protective. I was so scared, before I even knew about the autism; a gauzy gray fear was wrapped around everything I experienced as a new mom. I think I was sensing autism, almost from the very beginning. I felt it when I looked at Nat, and it
just kind of seemed like he would be content without me, like he didn’t need me. His smile was always inward. And very quickly, as the developmental phases unfolded mostly normally over the months, I learned what it was like to be plagued with self-doubt. I felt something was wrong, but nobody else did. No one believed me.

Nat’s diagnosis marked a huge change in our lives, a huge change in me. It wasn’t just the focus it gave me, of needing to learn and learn fast; it was also the awareness that I had been right. Little scared new mother me, imagine that! It turned out I had a mother’s instinct par excellence!

If I were to give the young me any pearls of wisdom gleaned along the way, I would start with this lesson about intuition. I would say, “Trust your gut; you know your child best.” The sooner I realized that I did know about Nat, the better I felt. The stronger I felt. I think that we need to feel strong as a first step towards dealing with autism. Strength breeds clarity, and from clarity comes vision, perspective.

Getting clear about what is around you marks the early days post-diagnosis, but there will always be the need to focus and understand, even when your child is older. The important thing is to know your kid, and then figure out what’s important—to you and your family.

Early on, I knew that I wanted to be able to take family vacations the way I had with my family growing up. I did not want autism to stop that. And yet, it was so hard taking Nat to new places that I almost did give up the desire. Until one night, just before Thanksgiving, when I grumbled that there were no books that could
help someone like Nat get through the holiday.

“Why don’t you make it yourself?” my husband Ned asked, making it seem simple and obvious. Making me feel like I could do it. And so I did, cutting up family pictures and sticking them together to flimsy pages, telling the story of what Nat’s Thanksgiving would be like, and showing him the familiar faces he would see.

And Nat was delighted with it. This type of “Nat Book” became our first strategy for taking Nat to new events. It was a successful strategy both for Nat and for me, because it strengthened my conviction that I did know what to do.

Over the years Ned and I developed this kind of pattern, where we would talk together (grumble and grouse) about a problem we needed to solve, and together we would come up with some kind of solution. And later on, we would look back on the problem and it would be part of our “couple culture,” a phrase I coined for our history together. There are so many old Nat stories we laugh about now, simply because we survived them. Like the time I caught him carrying poop from one toilet to another, simply because the first toilet was not working. “Ah, good times,” my husband will say sarcastically, and we’ll laugh. Laughing makes the event into something contained, shared and safe. It also makes you feel like you have a good
life, after all. And who is to say you don’t?

I did not learn the most important lesson about being Nat’s mom until he was in his early teens. We were sitting on the living room couch together and he was being horrible. He was loudly and hysterically fake-laughing. He had been doing this for months. We could not ever get him to stop. But in that moment, that late afternoon, I kind of gave up trying. I just started poking him and tickling him, saying, “What’s so funny, you? Huh?”

And suddenly we were laughing together. Real laughter. This struck me to my core. I think that any remaining shreds of old fear fell away then, as I realized the most important thing of all: Nat is just a kid. Not a creature,
not a disorder, not a freak of nature.

He is just my son and that is that. Knowing that, feeling that, is the secret of making peace with autism.

Susan Senator is the author of Making Peace with Autism and The Autism Mom’s Survival Guide. She lives in Boston. Follow her at Here's a moving recent piece about explaining autism to her son. Photo by Jared Leeds.

Wednesday, September 7, 2011

Day 2

Yesterday went better than expected. I'm so grateful that Ben has been given this opportunity. Three years ago I was told that Ben couldn't attend this program and I accepted that. I did what others said was best for him.

I know there will be many challenges but I believe being in a regular school that is focused on learning -- not life skills -- will support his development and give him a range of experiences he wouldn't have otherwise. The advantage of this particular school is that it has a unit for students who are deaf/hard-of-hearing and use sign language. Over time the students are mainstreamed into regular classes with interpreters. At this point Ben has eight courses and two are mainstream. We may adjust his courseload if it's too onerous for him.

One thing that has been positively received is a package I put together about Ben -- including our goals for inclusion, the issues we had with segregation, his strengths and dreams as identified in his life plan, a report from overnight camp this summer, and a list of strengths written by D'Arcy. I also included correspondence I've had with an inclusion expert who answered my practical questions.

Our goals were things like: To feel accepted by the general community; to have interaction with peers; to improve his reading, writing, keyboarding and numeracy; to be exposed to some of the general curriculum; to have the opportunity to make friends and learn social norms; to be able to join a club at school; and to benefit from peer mentorship.

The package about Ben is being handed out to all teachers at a meeting about him today.

Considering the resistance to this option three years ago -- because Ben didn't meet the student 'profile' for the program due to his intellectual disability -- I'm amazed at the positive attitudes and willingness to make things work in the school itself. I will keep my fingers crossed. Louise

Tuesday, September 6, 2011

Why pictures matter

George Estreich is a poet and college instructor who became a stay-at-home Dad 15 years ago. The Shape of the Eye (above) is his elegant, thoughtful memoir about stories: the birth of his daughter Laura, who has Down syndrome; his own family history, which includes a mother who watched Tokyo's  firebombing as a teenager and a father who dies of cancer; and the cultural narrative of Down syndrome that evolved from John Langdon Down's description of a new race of 'Mongolian idiots.' For BLOOM, George writes about how popular images reflect the two opposing cultural views of Down syndrome: those of 'person' and 'defect.' 

Thanks George! Louise

Why pictures matter
By George Estreich

The image, and the website I found it on, is long gone from the Internet – taken down, perhaps, out of belated respect for patient privacy. But the teenager with Down syndrome, the bruised, disoriented adolescent photographed in a hospital exam room, used to have his own URL. A dewdrop, on the endless silk of the Web. As I began writing this essay, I went looking for the link again, and was glad to find it inactive.

I'd come across the picture while researching The Shape of the Eye, my memoir about raising a daughter with Down syndrome. Nearly four years into the project, I'd come to see that it wasn't enough to tell Laura's story; I wanted to set her story against the way the condition's story is told. So I'd been reading genetics textbooks, parent guidebooks, alternative medicine guides, children's books, and more, trying to discern patterns in that story. But on a rainy Oregon morning in January, I had one of the bright ideas that tended to delay the completion of my book: I realized that in all my research, I had focused almost exclusively on words. I typed Down syndrome into Google Images and hit enter.

What appeared on the screen, a fraction of a fraction of a Mississippi later, seemed the bright fragments of a universe, as if the images were hurtling outward from the moment of the syndrome's discovery. There were faces, karyotypes, charts, tables. Regional Down syndrome association logos, with their butterflies, doves, rainbows, hearts. A picture of John C. McGinley – the irascible doctor on the sitcom Scrubs, whose son, in real life, has Down syndrome. An 80s punk band called Down Syndrome. An ear, an eye, a double helix. Charts correlating maternal age and probability of trisomy. A younger sister with Down syndrome, an older sister without, hugging each other, grinning for the camera in party hats. A campus map, the clinic marked by a red X. A man and two women smiling, holding wineglasses at a benefit. A diagrammed heart defect. A line drawing of intestinal atresia. A smiling plastic surgeon. A double helix. A transgenic mouse. An elaborate painting by a man with Down syndrome, on an outsider art website. A molecular biologist looking up, smiling, from a lab bench, pipette in hand. I clicked and scrolled, past a doll with Down syndrome (incurved pinky, transverse palmar crease), a palate mapped with black dots (speech study), and then I saw the teenage boy.

He was caught in a flash photograph, the tubes and dials of a hospital room lit dimly behind him. It was hard to tell his gender at first, his face was so badly bruised. He had a black eye, bloody teeth, swollen lips. In the stark light he looked almost panicked. I clicked on his face and found a breezy, fragmented narrative of an emergency physician's day: I'd stumbled across the doctor's personal website. Attached to the boy's picture was this explanatory caption: "A sudden fall in a Down's syndrome patient. . .Note the relative absence of a nasal bone on X-ray." There were other patients too, each with their blurry digital photographs, but only the boy with Down syndrome had a face; and paradoxically, though he was the only one identifiable, he was also the most dehumanized.

It was a common experience while I was writing my book. I would be paddling along, enjoying the special caffeinated relaxation that only diligent procrastination can provide, then get blindsided by an image or a word. Often it seemed to me that the ordinary boundaries between "personal" and "academic," or between "literature" and "science," had been simply tossed aside, or were never there in the first place. My daughter's story opened a door on an endless storeroom of dry, uncatalogued facts. Sifting through them, I'd stumble across some cursed charm or amulet, something that conjured a deep apprehension about my daughter's place in the world.

I wondered what the doctor knew about Down syndrome. I remembered a genetics textbook I'd come across, one evening in the university library. In it, I'd seen another flash photograph of a teenage boy with Down syndrome. The boy was naked, standing against a white wall marked with inch measurements. A chromosomal mug shot. In textbooks nowadays, you're more likely to see appealing pictures of smiling children. But more "positive portrayals," welcome as they are, are not enough, in the same way that respectful language is a beginning, but not enough. Our newspapers abound in positive portrayals. What we need is a shared vision of dignity across the lifespan: a sense that people with Down syndrome are not only cute children, but adults too.

In her memoir The Liar's Club, Mary Karr notes that an argument with her father stands out in her memory precisely because it is atypical. As a memoirist and practicing human, this comment rings true for me. Good stories, by definition, tend to be unusual. This is true, as well, for the photo of the teenage boy. In many ways, the photo is an outlier, and the doctor who took it and displayed it is not, in my view, remotely typical: we like most of the medical professionals who've helped Laura, and have become friends with some of them too. In addition, there are issues raised by the photo – like the violation of the patient's privacy – about which there can be no serious debate.

So why bring it up? Because in another way, I think the photo is typical: it betrays a deeply conflicted view of people with Down syndrome, a view common in our culture. On the one hand, the boy was seen as a human worth treating. On the other hand, he was seen as unworthy of the privacy given the doctor's other patients: he was a specimen, something to display. In this way, the photo of the boy embodies the jarring alternation I found, scrolling through my search results. First a face, then a karyotype, then another face. . . taken together, the images illustrated the gulf between the two radically different views of Down syndrome: between people and defects, hope and tragedy, stories and diagnoses. For a long time I had been writing in hopes that I might bridge that gulf. I was coming around to simply accepting it as a feature of the world. The boy's photo was striking because it embodied both halves of the contradiction: he was person and specimen at once.

In a broader sense, my search results illuminated the problem faced by patients, their families, and medical professionals: we do not have a coherent cultural idea of what it means to have Down syndrome, and especially what it might mean to be an adult with Down syndrome. Moreover, that confusion is mostly unspoken. We have the images, the face, the unusual eyes, but we have no agreement on what they mean. Ultimately, this confusion raises a basic question: What conception underlies the care we give to people with Down syndrome? Why the sutures, the ice packs, the splints, in case of a fall? Why repair the heart defect, the intestinal atresia? What life can the patient hope for, post-repair?

I didn't always know why I was writing Laura's story, why I felt driven to do it. But one goal was to contribute, in a small way, to an emerging common sense of Down syndrome: one which transcends the ordinary opposition between "clinical," in the pejorative sense, and sentimental. It seemed and seems to me that people with Down syndrome are seen either as "good-natured," in a childlike way, or are held up as examples of bad nature. Too often they are seen either as angels or defects; too often, they are seen as perpetual children. I think that we would be better served seeing them as present and future citizens; that our medical interventions would be best if we keep that vision of adulthood and citizenship in mind; and that narrative – a narrative which is clear-eyed about medical realities, yet without surrendering hope – provides one means to make that vision real to the doctors of today and tomorrow.