Tuesday, April 30, 2013

Fit for a queen

A mom who writes at Maggie World shared this pic of daughter Maggie, 19 (top right), in her prom dress designed by Anne Marie, 16 (top left).

"It's very difficult for Maggie to wear dresses because the straps from her wheelchair come right up between her legs. Further, her trache tube needs some sort of covering. This daughter of my friend loves to design clothes and designed and created a dress specifically for Maggie to wear to her prom night.

"She drew the pattern, let Maggie pick the fabric and then created it quite literally out of whole cloth. It is difficult to see how amazing this is because Anne Marie made it look so effortless. The straps on Maggie's chair come up through her legs but that's hidden by the design. Because it's a skirt, the straps can come through the waistband and secure her to the chair. The scarf is another amazing feature. It begins as a sash of sorts sewn to the camisole and then continues as a scarf to use for Maggie's trache. "It's ingenious. It's thoughtful. And it's so very generous."

I love it!

Monday, April 29, 2013

Med students put themselves in the picture

Last week I met with an academic who uses comics to build empathy in medical students.

Her name is Shelley Wall and she's illustrator in residence in the medical school at the University of Toronto.

She drew the picture above to better understand her husband's experience of having early-onset Parkinson's disease. It shows the way he adapts his clothes to deal with problems with balance, movement and pain. For example, he wears knee pads to combat frequent falls and boots that help prevent foot cramps. 

When Shelley presented this series at a conference on comics and medicine, people in the audience noted that it was apt that she, as caregiver, appeared in the margins. "There were people in the audience who were caregivers and they said 'We don't often see our story told. The caregiver is, literally, marginalized.'"

Shelley, who's an assistant professor in U of T's biomedical communications, uses comics in a five-week seminar for medical students. "I choose snippets of graphic novels that relate to a scene of a clinical encounter between a doctor and patient," she says. "I get my students to do thought balloons for the other characters. So if the piece is about a doctor's perspective, they come up with what the patient or family is thinking."

Another exercise involves students telling a story about a health encounter or ethical dilemma by drawing three panels of stick figures. After they produce their narrative, they need to go back and redraw it from a different point of view. "It's a way of manipulating stories from different angles," Shelley says.

"As a result of going into the head of someone living through an experience and trying to personalize an event, they come to insights that hadn't occurred to them."

Students are often surprised to discover that each patient has a unique story. "One student said: 'We're going through these checklists to come up with a diagnosis  but every patient has a completely different story and interpretation of what's going on.' That was such a revelation to her."

Shelley says that images are a powerful way to convey health-care experiences. "The reader puts his or her own self and feelings into the image, and there's so much interpretation involved."

When drawing illustrations students need to pay attention to details they might not otherwise. "When you draw someone you really see them in their individuality in a way that you don't if you're just looking at them. You notice things you don't notice if you're not trying to set it down visually."

Friday, April 26, 2013

How Teddy 'opened' his family

Softening is an exquisite film by Kelly O'Brien, documenting life with her son Teddy, now 6, who was born with brain damage and a grim prognosis. It's a candid story about a mother's love and loss, a sister's magical bond, a father's joy and dedication and a little boy's experience of the world, moment by moment. It premiered at Toronto's Hot Docs film festival in April. Teddy and sister Emma appear above.

Here Megan Jones interviews the filmmaker Kelly O'Brien.

BLOOM: When did you decide to make the film?

Kelly O'Brien: Before I had kids I was a television producer and I made diary films on the side as a hobby. And then when Teddy was born I had to stop working. But I had an old video camera kicking around. And so I took little movies of what was happening but I never really thought they would become anything.

I knew when Teddy was born that it was the stuff of drama. I knew that if I could tell the story it would be something that people were interested in. But I was in too much pain to be able to figure out how to do that. I guess when Teddy was three, I applied to school and I went back and did my master’s in fine art at York. And that’s how I really made the film. I needed people to tell me that it was important to make the film because it was a really hard film to make. And I don’t think I could have made it outside of that.

I always wanted to shed a different light on disability from a very personal perspective. But I needed other people’s help to get to that place, and feel like it was something I was able to do. And I also needed to have enough distance from the initial few years after Teddy was born to be able to have the space to make it.

BLOOM: What was the main catalyst for making the film?

Kelly O'Brien: I read Joan Didion’s book The Year of Magical Thinking. She wrote about the death of her husband, and she said that she wrote that memoir as a way of trying to make sense of what happened. And I guess when I heard that I thought that I could use this film as a way of making sense of what happened to me, to Teddy, to our family.

BLOOM: In the film you say that you couldn't look at pictures you'd taken of Teddy. How did you move from that to making an entire film? 

Kelly O'Brien: It was a really slow process. You can kind of slowly remember what happened. And then you look at images one by one and year by year and they kind of come back to you.

I think there are a lot of factors, I think time was one of them. I had dealt with that initial sadness of ‘This isn’t the child that I thought I was gonna have.’ To coming to a better place with it all. I think that made it easier to look at the pictures.

But it wasn’t really until watching the images—there’s a scene where Teddy’s sitting in his high chair, and he’s playing with a toy, and at the end I say ‘Oh, he looks so happy!’ I didn’t remember that footage.

When I saw it a few years after I had taken it, I was taken that I had that perspective back then, that I was able to see that happiness in those moments. But it’s a slow process. I still don’t really want to watch the film. It’s not easy to watch at times. Also, I say in the film, a lot of it just had to do with getting to know Teddy better, and appreciating him for who he was.

BLOOM: Did making the film change your relationship to Teddy?

I think it allowed our family to make something together. I miss that, that connection. We would spend time together and it felt like we were doing something creative and fun as a family. And it was a special time that Teddy and I did have where it felt like I wasn’t just being sad, or taking care of him. We could do this thing together. So yeah, there was a bond, a closeness that we have that we discovered in the making of it.

BLOOM: Has your thinking about disability or about parenting changed?

Kelly O'Brien: I think the film maps a journey. I think I would have come to it anyways. But I think it’s complicated. There’re so many different emotions that you have around having a son like Teddy. And they range from grief to joy.

One of the important things for me with the film is that I’m not really one of those parents of a kid with special needs that thinks it’s a gift from God or a blessing in disguise. I don’t believe that. I think you have to make it joyful. I don’t think it’s like fate or something like that. I wanted that to be in the film. I wanted to be honest. And I also wanted to show that honesty with Emma. I also wanted to talk about what it’s like to be a sibling of a child with special needs.

BLOOM: Why was it important for you to make the film for yourself rather than hand your story off to someone else?

Kelly O'Brien: I didn’t leave my house for two years after Teddy was born. I was devastated. I didn’t do anything. So initially it was a way for me to get back into the world and have some connection to what I used to do.

Now I feel more like I’m on a political mission, to tell you the truth. If I can make a child like Teddy more human to people and so they see the complexity of our situation, but also the beauty of it, then I feel like that will be worthwhile.

BLOOM: In light of that, is there anything in particular you’re hoping audiences will take away from the film?

Kelly O'Brien: I hope that it makes people think differently about family and about different ways of connecting. That you can find love and compassion for—it sounds so cliché—but for people that are different than you.

BLOOM: The documentary is so personal. Were you ever afraid of what people would think or say about the film?

Kelly O'Brien: Jeanette Winterson wrote a biography called Why be Happy When You Can Be Normal? And she talks about writing the story that she could live with. The real story was too painful. I think I did that. This isn’t the whole story of what we went through. They’re just fragments of our life. Some insight of what it’s like to have a kid like Teddy.

I think I worry that I maybe presented a prettier picture. I was always afraid that I couldn’t say what I wanted to say. I feel like I’ve been through so much though that I honestly don’t care if people don’t like it, or don’t agree with what I have to say. I just wanted to be as honest as I could to what I was experiencing and what our family was experiencing.

BLOOM: What were the things that got left out?

Kelly O'Brien: A lot of my sadness wasn’t in the film. There were two years of intense sadness. I felt like that wasn’t fair to Teddy. I didn’t want to portray what happened as a tragedy. That wouldn’t have been an interesting film. Who wants to hear about a mother complaining and whining?

I knew that I had to get to a better place before I made the film. I also knew that Emma and Terence had very different relationships with Teddy. And all of a sudden that donned on me, that that would be really important. Initially this film was just going to be about me and Teddy and then I thought that would be too narrow.

The other thing that got left out was all of Teddy’s doctors' appointments. I couldn’t film that, it was hard enough for me just to be at those appointments. I couldn’t do it. So I chose just to film Teddy at home, and then it became clear that it would just be this really small, intimate film about Teddy and our family.

When I was pregnant with Willow, I was just beside myself with worry over that pregnancy, and I was trying to edit the film. And I would listen to some of the messages friends had left after Teddy was born and I just couldn’t do it. I put the film on hold until she was born, and then was able to work on it again when that worry had subsided.

BLOOM: What were the biggest challenges of the filmmaking process?

Kelly O'Brien: There were so many challenges. I can’t even tell you. Just having to take the pictures, to figure out what you want to say about them, to get to a place where you’re actually emotionally stable enough to do it. There were moments when I was editing it together that I was just sobbing.

So I think I just needed to get to a place where I was okay, and I could tell the story in a way that was fair to Teddy. Because he can’t speak for himself. I think that was a big challenge. How do I talk about him when he can’t talk about himself? And how do I do that in a way that’s ethically fair? How do I represent him honestly? And then how do I talk about the difficulties of that in a way that still maintains that fairness? Just coming to terms with my own grief and getting to a place where I could think about those bigger questions was a challenge.

The joy was when I could actually look at some of those pictures of Teddy and see the beauty in them. There was a lot of beauty there. And then seeing footage of Teddy with my youngest daughter when she was born—how sweet that was—and being able to celebrate that. I’m glad I have those images, as opposed to before when I couldn’t look at them. Being able to have that memory bank is important.

The beauty of it was really important to me. Even now, you take Teddy into the world and people gawk and stare and I can’t bear it. You just relive what happened, the story, over and over again when people stare at you like that. I felt like if I could make it beautiful, then people wouldn’t turn their heads, or they wouldn’t have so much fear. They would be able to see the situation, see Teddy for who he is.

The other challenge for making the movie was that when Teddy was born there was no great overcoming of obstacles. He actually ended up with a bit of a worse diagnosis than the one we were given when he was born. In documentary you’re supposed to have this huge transformation and a happy ending. And I knew that wasn’t the arc of our lives. I was conscious when I was telling our story that it wasn’t a sort of ‘TV movie of the week’ story about disability.

BLOOM: Could you explain the significance of the title of the movie?

Kelly O'Brien: I was visiting my brother in Ottawa, and there was a Louise Bourgeois exhibit at the gallery. There was a quote on the wall about how she was softened by her husband and her children. I just kept reading the quote over and over. I thought ‘That’s what I’m going to call my film.’

I feel like that’s what happened to me. What happens initially when you’re dealing with grief is you become angry and bitter—you become quite hard. I was not a nice person to be around. But there’s also this incredible vulnerability, this rawness because you’re so emotionally opened up. And that’s a beautiful place to be in. You can’t live your life like that. But to be open and kind hearted and open and soft is worth it. And I think having Teddy in your lifehe does that.

Thursday, April 25, 2013

When brain differences aren't deficits

Neurodiversity suggests that there are benefits to brains that think differently.

In this recent piece in WIRED, Steve Silberman looks at the strengths and skills that result from the unique brain wiring of people with autism, ADHD and dyslexia.

"One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn't mean that it's broken," Silberman writes. "Not all the features of atypical human operating systems are bugs. We owe any of the wonders of modern life to innovators who were brilliant in non-neurotypical ways. Herman Hollerith, who helped launch the age of computing by inventing a machine to tabulate and sort punch cards, once leaped out of a school window to escape his spelling lessons because he was dyslexic."

I tweeted Silberman to ask whether he includes intellectual disability in the neurodiversity fold. He tweeted back that he did, but hadn't written specifically about it yet. Did I have any pointers?

I've often felt that my son Ben's way of thinking conveys certain benefits.

He's real, for example, because he doesn't wear the deceptive social mask we 'neurotypicals' don to project an image of invulnerability, impress others and trick ourselves.

Ben is also able to live in the moment and he's able to slow down a moment to appreciate it.

He also doesn't wish to be someone else, which I think is very rare in our world. I remember a school assignment I did with him and in answer to: "If you could be anyone in the world, who would you be?" his no-brainer answer was: "Me."

What do you think are positives that come from intellectual disability?

I plan to write to Silberman more about this and would love to include your ideas. Thanks!

Tuesday, April 23, 2013

Making sense of autism risks

After my son was born with a random genetic change that my husband and I don't carry, I was told by geneticists that if I was to get pregnant again, the chance of having a second child with this condition was less than 1 per cent.

The genetics counsellor described those odds this way: "You have EVERY chance of having a perfect baby next time!"

I was given the green light for more kids.

So I was surprised to read a story about a Swedish study in the New York Times Motherlode column yesterday that suggests pregnant women shouldn't take antidepressants because they may increase the risk of autism without intellectual disability in a child by .6 per cent.

The baseline risk for having a child with autism is about 1.1 per cent (1 in 88 children), so this would bring the overall risk to under 2 per cent.

In other words, using antidepressants while pregnant may increase the risk of having a child with autism without intellectual disability by less than 1 per centthe same odds I was given of having a second child with a rare, spontaneous genetic change.

The same risk deemed by my geneticists to be so small that it shouldn't be a factor in my decision to have more children.

While I had a greater than 99 per cent chance of having a second healthy baby without my son's genetic condition, this Swedish study suggests women using antidepressants have a greater than 98 per cent chance of having a healthy baby without autism.

The hitch in the study was that a causal link wasn't found between antidepressant use and the .6 per cent increase in risk of having a child with autism. The researchers said the tiny increase in risk could be caused by the antidepressantsor it could be caused by the depression itself.

Kind of a big question mark as to what the study means!

Yet the headline on the Motherlode piece reads Study Links Autism with Antidepressant Use During Pregnancy and the story doesn't mention the size of the possible increase in risk (.6 per cent).

Many readers commenting on the article imply that antidepressants have been found to be a major risk factor for autism.

They haven't!

According to the March of Dimes, a woman has a 3 per cent chance of having a child with a birth defect.

This means that the risk of having a child with any birth defect when the mom doesn't use antidepressants is higher than the increased risk for autism suggested by antidepressant use in this study.

The Swedish study "is very important in highlighting which biological pathways may be involved in how autism develops, but the information isn't translatable to counselling an individual woman who wants to have a baby because the additional risk is too small," says Evdokia Anagnostou, a child neurologist who leads a clinical research program in autism at Holland Bloorview.

"The study is helpful in explaining the increase in autism rates in a huge population, but it doesn't identify antidepressant use as a major risk factor in individual cases," Evdokia says.

She likens it to a study last year that found that men in their 40s are more likely than those in their 20s to have a child with autism, but the overall risk was still low, at 2 per cent. Does this mean mean older men should stop having children?

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

Evdokia emphasized that autism is “a multi-factorial disease that can’t be prevented at this point. Paternal age can now be seen as one of many contributors to risk"but father's age and antidepressant use in moms don't explain the majority of risk.

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

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

When considering treatment of pregnant women with depression, it's important to remember that untreated depression can have negative impacts on children. In this 2013 study, children of depressed moms who weren't treated had behavioural problems in early childhood, while those whose moms took antidepressants didn't.

Saturday, April 20, 2013


Today we were having our regular Saturday lunch at a cafe near our home that makes great fresh food.

We'd just started eating when I heard one of my daughters say: "Stop looking at him!" "Why are you looking at him?" 

"What's your problem?"

It was noisy in the restaurant, so I didn't know if anyone else could hear her.

The person she was speaking to was sitting behind me.

"Is someone looking at Ben?" I asked.

"Yes," she said, eyeballing someone behind me and shaking her head. 

"He won't look away."

I turned around and saw an outdoorsy guy in his late 20s, someone who probably kayaks and shops at MEC.

I turned back.

"Tell him to take a picture next time," I said loudly.

We smiled and resumed eating.

I'm amazed sometimes by how ignorant adults can be, how rude. And it's one thing for us to deal with stigma. But it makes me sad and angry when it touches my kids.

Friday, April 19, 2013

Selective abortion: A choice or a social expectation?

When I was pregnant with my second child I had an amniocentesis—not because I wanted one or knew how I would act on the informationbut because I feared people would judge me if my second child was born with disabilities.

I feared people would say I'd chosen to have a child with disability, rather than that I'd chosen not to abort.

The testing was recommended because my first child had a random genetic condition. "I understand why you'd want to do everything in your power to prevent having a second abnormal baby," the obstetrician in the testing clinic said dryly.

I remained silent, not wishing to discuss my views on disability prevention or my son. The amnio came back normal and I didn't have to wrestle with my views on prenatal testing and abortion.

A week ago Andrew Solomon had an interesting piece in The New Yorker called Medical Progress, Social Progress, and Legal Regression.

While arguing against North Dakota's new laws that ban abortions for conditions like Down syndrome or spina bifida, he questions how informed decisions are when a woman doesn't have information about families raising children with the same condition her fetus has.

"Women often terminate a pregnancy without knowing what life would be like with and for an anomalous child," he writes. "It is worth publicizing the satisfaction that the experience may entail, so that the pro-choice movement becomes the pro-informed-choice movement."

Parents-to-be often "confuse how it feels to lose an ability (to be suddenly bereft of hearing) with how it feels to live healthily with a variant body (to be deaf all your life)," he writes. "Further, they confuse their own discomfort with their child’s."

Solomon points to a fascinating study that shows how people judge women who carry a baby with an identified disability to term or refuse prenatal testing. 

The survey asked 281 staff at a Canadian university and 341 Canadian doctors who work in obstetrics to rate three scenarios in which a woman's child is born with a disability. The first woman chose not to have testing, against the advice of her doctor. The second chose to continue her pregnancy after testing identified a disability. The third was not offered testing by her doctor.

Participants were asked to rate how responsible each woman was for the disabled child and how much to blame. They also had to score how much each woman deserved sympathy, and how deserving each was of social services and financial aid to help her care for the child.

"Numerous examinations of attributions for outcomes have concluded that individuals are held more to blame for a negative event when it is perceived as being under their control or preventable," the researcher notes.

Both the university community and the doctors rated the woman who chose not to abort her disabled fetus and the woman who refused prenatal testing as more responsible, more to blame, less deserving of sympathy, and less deserving of social and financial support for their child's care than the woman who wasn't offered testing.

"This examination is of pragmatic relevance because of a growing sentiment that prenatal testing can and should be used to meet public economic goals by reducing the financial burden that disability places on the medical and social welfare systems, and that women who do not use it to prevent the birth of a disabled child should be held financially or legally accountable."

The key phrase here is "prevent the birth of a disabled child." Abortion doesn't prevent disability. It prevents the birth of a child who has a disability. They are two quite different things. 

I was surprised to see that this study was 10 years old. I think public opinion about women who don't abort for fetal disability has hardened since then.

Wednesday, April 17, 2013

'I love the boy to pieces and I'm grief-stricken'

Here's a sneak peek at part of an interview we're running in the summer issue of BLOOM. It's with acclaimed British director Stephen Unwin.

Unwin is directing Peter Nichols’ A Day in the Death of Joe Egg, a 1967 comedy about parenting a child with profound disabilities. The play, at the Liverpool Playhouse and then the Rose Theatre in London, strikes close to home because Stephen’s son Joey, 16 (above left, with sister Bea), has severe epilepsy, an intellectual disability, and no speech.

BLOOM: What is A Day in the Death of Joe Egg about?

Stephen Unwin:
It’s a brilliant black comedy about how a married couple deals with being parents of a child who is profoundly disabled—both physically and intellectually.

Little Josephine is 11 and has cerebral palsy, sits in a wheelchair, has no speech, very limited capacity and suffers from epilepsy. It’s a weird comedy, which was such a hit in the 1960s, that describes the full range of emotions of parents and families of profoundly disabled children.

It ranges from jokes to despair to hard work to fantasy, to the parents having differences of views, to guilt, and the perspectives of other people. The grandmother goes around saying: ‘Wouldn’t she be lovely if she was running about?’ And somehow Peter Nichols makes sense of this extraordinary comedy.

It’s not funny in a simplistic way, but in a way that makes you howl. One of the things I like about the play is that it’s not moralistically or idealistically saying ‘We are all so happy to have these disabled children.’ Nor is it saying ‘It’s only a tragedy.’ The mother gains meaning through being Joe’s mother.

BLOOM: I’ve used black humour to cope with extreme situations. But will an audience with no experience with disability understand the humour in the same way you or I would?

Stephen Unwin:
None of the actors have experience parenting disabled kids, so one of the things I had to do is show them how the child is just a child.

People tend to have two responses to serious disability: one is terror and the other is optimistic reverence, and you and I know that neither is helpful.

The only answer is reality: ‘Yea, this is what the kid is like, and this is what caring is like.’ It’s nothing to be scared about, but I don’t buy the idea that ‘This is a blessing from God.’ That’s bullshit. Nor is it a punishment. I think it’s just part of reality and the only answer is acknowledging the reality.

BLOOM: What kind of things did you explain to the actors about parenting disabled children?

Stephen Unwin:
The child in the play goes to a day centre and the mom discovers that they haven’t changed her diaper all day. I was trying to explain what that’s like to the actress who plays the mom. She has young children, she knows what it’s like to change nappies on a one-year-old, but working out whether an 11-year-old has wet themselves? It’s quite hard physical work. But it’s what you do every day of your life and you’re not squeamish about it.

I’d explain what it’s like to give epilepsy medicine to a child who’s shaking, and you go ‘Shit, it’s gone all over the place,’ and you start again.

I try to show people what they take for granted. For example, when Joe has a seizure in the play they would all jump up to deal with it. No, I said, it’s not like that. This has been happening every day for 11 years, so it’s a different rhythm.

I remind actors of the reality of the situation because I have a parallel experience. But it’s not about my Joey. My Joey runs around and bounces and in many ways is healthy. It’s about Peter Nichols’ child with profound cerebral palsy, who died.

BLOOM: In The Guardian you wrote about your son’s 16th birthday—cake, candles, presents and early to bed—which isn’t what you’d expect with a typical teenager. But do you think we project our own sorrow on to our kids—our own wish that life was different for them—when from their perspective, they’re experiencing something in a rich way?

Stephen Unwin:
I think that’s right. But I don’t want to have my grief invalidated by anybody.

I think there’s a sort of pressure on parents of disabled kids to be marvellous, and I howl about it sometimes. I find it really fucking hard. I was brought up with language. I had a really old-fashioned English classical education. I’m over-educated, language is everything for me and I’m dealing with a son who has no speech.

I love the boy to pieces and I’m grief stricken and that’s not a contradiction, that’s real. Both are true and I feel really passionately that parents have to be allowed to have that range of emotions. This is the ultimate rollercoaster.

Sometimes it’s absolute bliss and sometimes I feel a great big hole inside, I feel hollow inside.

BLOOM: What have you learned from Joey’s lack of speech?

Stephen Unwin:
That there’s something beyond words. But that to me is a very challenging thing to have to understand because I write books and I direct Shakespeare and I’m completely classical about language.

If I had a son who couldn’t play football or fix a car, I’d say: ‘Oh well, I can’t play football, I can’t do any of that manly stuff.’ I can write and I read and read and read and I work on language all the time. So seeing that there is communication beyond language has been the biggest journey for me, and it’s about as far away as what I was programmed to do. It’s a difficult place to get to.

Tuesday, April 16, 2013

'The little things? They aren't little'

I left for work with a pain in my chest yesterday. Ben didn't want to get out of bed. He grunted, signed he was 'mad,' folding his arms in a combative stance, and refused to get dressed. It took a massive amount of cajoling to get him out the door. I felt guilty, knowing I was sending him to a place that causes him great anxiety.

Ben had a vocabulary test on the book The Count of Monte Cristo. I envisioned him having a meltdown when asked to answer the questions. I was waiting for a call from school. He often acts out, disrupting the whole class and needing to be taken out.

By 2 p.m. I hadn't heard a peep. I e-mailed to say I knew Ben was having a rough day. I was not expecting the answer I got:

"He did fabulous on his English test. He achieved a mark of 25 out of 31. The questions were not read to him. He did all the reading himself! Nice!"

Because Ben can't speak and struggles to write, he was given three definitions for each of 31 words, and had to circle the correct one. The words were things like "governor," "damp," and "dungeon."

In the past, his EA has read him the questions to make sure he understands. We're never sure of how much he can read or how fluently.

I took a deep breath and let myself feel giddy. I couldn't wait to get home and give Ben a high-five and check out which answers he got right. We'd read the book together, and I knew he had a good understanding (but often he can't demonstrate it). 

I cranked the radio and drove home happy. 

Until this thought came to me: "It doesn't matter because it doesn't change anything. It's not an indication of some big breakthrough. He's 19. Understanding some words from The Count of Monte Cristo is not going to translate into anything useful."

Despite this rain on my parade I arrived home and freaked out when I saw Ben and the test. "Woo hoo!" I screamed, giving him a high-five. "Congratulations!" 

I flipped through the pages and felt validated for the time I'd spent reading with Ben. He picked the right definitions for "Useless"--yes! "Dull noise"--yes. "Loosen"--yes. "Worth"--yes.

I couldn't remember the sign for "easy" so I wrote out "easy" and "hard" and asked him what it was: Easy, he said.

Before the night was out Ben began coughing. He signed that he felt "green." His brother's been sick so I thought he might be coming down with the same thing. On the other hand, he's been known to do a brilliant performance of uncontrollable coughing that abates as soon as he gets out of school.

This morning he stayed home and I wondered if we were in for a week away. Ben doesn't just get sick, he gets really sick. For days. Then it's hard for him to make the transition back to school.

My high from Ben's Monte Cristo success faded into a lament: he always gets sick.

When I got into work I read this post by Kate Leong, a mom who lost her five-year-old son with disabilities this weekend after he had multiple cardiac arrests. 

She writes about giving her son Gavin his last bath and massage: trying to memorize the touch and scent of his skin, cutting some of his hair to take home with her. Then she curls her body next to his for one last night and feels his presence.

In the end, that's all that matters, isn't it? The presence of our loved ones, not what they do, what they achieve. Their presence is enough.

It's so easy to focus on what we don't have, on ways we wish things were different for our kids, for us, so hard to keep our eyes glued to the moments of joy and content. 

This is it. Whatever odds we're dealt in life, we have to work with them. 

Disability is usually about what isn't, a list of things a child can't do relative to a typical peer.

We need to fill ourselves up with what is, and when it comes to our kids, 'what is' is immense.

Kate ends her post with this clip of Gavin feeling the cool lap of the ocean's waves.

"The little things?" says mindfulness teacher Jon Kabat-Zinn. "The little moments? They aren't little."

Wednesday, April 10, 2013

Pink day

Ben came home today with this cool pink bracelet and ribbon, all part of Day of Pink, an international day against bullying and homophobia.

Join us on Parent Voices!

We have a new group on Facebook for parents of children with disabilities to ask questions, share practical information, discuss topics and support each other.

Swing over and join us at Parent Voices. Louise

Tuesday, April 9, 2013

How one boy's life changed mine

By Nick Joachimides

Everybody has defining moments in their life. Mine occurred 17 years ago while I was a high-school student doing a co-op placement on the complex continuing-care unit at Bloorview Children's Hospital. I wanted to try my hand at nursing for a potential career.

I was naïve about the number of children with disabilities and it was eye-opening in that sense, that a whole hospital would be dedicated to these kids. “Why would a guy want to be a nurse?” was the typical response from my teenage friends. I noticed there was only one other male on the unit and the young boys were drawn to me, as I was only 18.

During this time I got to know one boy who was 11 really well. I was tasked with helping him get ready for school—bathing, dressing and feeding him.

This boy looked different, and spoke different, and had lots of complex medical needs. Yet it struck me that he wanted all the same things out of life that any other boy his age wanted. We talked about TV and music and girls. We liked to play practical jokes on the nurses, and we’d both laugh when we pulled off a good one.

As the placement went on I realized that Holland Bloorview was the place for me. I entered nursing school the next year with one goal in mind: nursing at Holland Bloorview. Most of my classmates were going on to work in acute-care settings, but I knew that pediatric rehab was where I wanted to be.

While I was at university I volunteered with recreation therapy at Holland Bloorview, and then got a part-time job running the inpatient recreation programs.

It was while I was working with recreation a few years later that I asked a colleague about the boy I had first worked with. She said “I’m really sorry to tell you he passed away.” I remember going home and being shaken up. He would have been 13 when he died. How does a 13-year-old pass away?

The warning signs were all there but I was so naïve to childhood illness and disability and so many of the other kids I’d worked with on co-op were still at Holland Bloorview. To this day I get upset about it. I see other clients in the hall and I don’t see him, and it affects me.

It’s still in the back of my mind how much that one boy impacted my life. He’s basically the reason I’m here and he gives me the drive to make sure that we’re using best practices and keeping kids safe in my patient safety role now. This boy’s family doesn’t know how their child’s life changed mine. I’m certain that if I hadn’t met him and connected with him on the level I did, I might not be working where I am today.

After I graduated there were no jobs at Holland Bloorview so I worked in acute pediatrics at Scarborough General Hospital. Six months later a nursing job came up in the brain-injury unit here and I’ve been here ever since.

I’ve never had a true struggle in my life. When I look at what these kids go through at such a young age, and now being a father, looking at my daughter who’s this healthy, normally developing kid, I can’t imagine what the families go through on a personal level watching their child experience this.

I’ve worked with children with spinal-cord injury who’ve had catastrophic injuries and I’ve never had a child in the 12 years I’ve been here say: “Why did this have to happen to me?” I’m not saying they don’t have those thoughts, and that the situations aren’t sad for their families, but the kids at the end of the day want to be kids. They want to have fun, they want to be treated like children. They need people here who can demedicalize the environment. As nurses, we think we’re medical, and that’s what we do. But it doesn’t mean you have to medicalize a child’s entire life.

I spend more time with these kids than I spend with my daughter, over years, and it’s hard not to start to get to know people on a personal level. We’re human and we see people hurting and suffering.

The nursing college has guidelines about maintaining professional boundaries and that’s a skill that you acquire. I try to find those common ground things—like the fact that I’m a Montreal Canadiens fan—and stay away from what’s happening in my personal life.

I don’t think the patients and families know how much they give to us. They motivate us to seek out more knowledge, to strive for excellence and to look for gaps in the system that can be tightened up with best practices. They motivate us to be better clinicians.

Many people in my life have wondered why I want to work in what they see as a sad, depressing place.

There are sad moments for sure, and they humble you. But Holland Bloorview has so many happy moments.

The opportunity to work each and every day with children who just want to be children, to laugh and play, is the greatest reward for heading into the hospital.

I’ve been nursing for 12 years and hold a degree and a master’s and several other certifications. But I learn the most from spending time
with the kids who access services here, and their families.

Nick Joachimides is manager of patient safety at Holland Bloorview.

Sunday, April 7, 2013

Bad Animals: Joel Yanofsky on World Autism Day

Friday, April 5, 2013

Who will speak for Ethan Saylor?

By Louise Kinross

Why are so few journalists, public figures and human-rights and disability groups willing to make a noise about the death of Robert Ethan Saylor, 26, who had Down syndrome, in a movie theatre?

On January 12, Saylor ended up face down on the ground in three sets of handcuffs and suffocated because he refused to get out of his seat following a showing of Zero Dark Thirty in Frederick, Maryland.

His worker, who had accompanied him, had gone to get the car. The theatre manager called mall security. It arrived in the form of three county sheriff deputies, who were moonlighting.

According to this Associated Press story, Saylor swore at the deputies when they told him to leave. When one put a hand on Saylor to move him, he resisted, so the other two joined in and the four men ended up "in a heap" in the aisle, says the AP story.

Someone called Saylor's mother and she jumped in her car, minutes away. 

The deputies handcuffed Saylor, who weighed almost 300 pounds, on his stomach. Some reports said they piled on top of him. He called out for his mother. Within a couple of minutes he was unresponsive and they rolled him over. Unable to find a pulse they undid the cuffs and began chest compressions.

The death was ruled a homicide by the coroner, and the autopsy report said he showed signs of positional asphyxia: he couldn't breathe given the way he was lying. But a grand jury decided no criminal charges were necessary and the deputies' attorney said they "did what was necessary."

If only they'd just done nothing.

The autopsy report says that his developmental disability, obesity, heart disease and a heart abnormality contributed to his death.

But the bottom line is that Saylor wouldn't have died if he hadn't been pushed to the ground and handcuffed on his stomach.

Who was Saylor a threat to? Certainly not THREE deputies. Saylor was unarmed and 5-foot-6.

Was the next showing of Zero Dark Thirty more important than this man's life?

I think the autopsy report illuminates a crucial point when it notes that Saylor's low IQ (his intellectual disability) contributed to his death.

Had Saylor been a man with typical intelligence and facial features who didn't speak English and refused to leave his seat, would the deputies have forced him, face-down, to the ground?

I highly doubt it.

I guarantee they would have searched for someone who could interpret for him. They would have afforded him this dignity. 

I think stereotypes about Down syndrome—about people with intellectual disability being less than human—were part of the mix here and fed fear in the deputies, contributing to their heavy-handed response.

Because of his differences, the deputies didn't know how to read Saylor's behaviour. They didn't know that he had a sensitivity to being touched. They didn't know whether his worker had told him to stay in his seat till she returned (apparently she had). Perhaps they didn't expect a person with Down syndrome to openly defy them.

In the scuffle that brought the three men and Saylor to the ground, I bet negative attitudes about Down syndrome kicked in automatically.

A French implicit association study last year showed that adults hold a negative bias against children with Down syndrome at an automatic or unconscious level—even when they openly say they accept children with disabilities. "These implicit associations are the result of social values...carried by our culture," lead researcher Claire Enea-Drapeau told me. They "are likely deeply embedded and difficult to break."

There is something about seeing our own vulnerability in people with mental disabilities that we can't stand, something we fear.

I was reminded of the Saylor story when I read over 400 comments to a New York Times' Motherlode post a few days ago called Outlawing Abortion Won't Help Children with Down Syndrome.

The post was a response to North Dakota outlawing abortion for genetic conditions like Down syndrome. Not many readers supported the law, but many argued for or against aborting fetuses with Down syndrome based on ability. People who deplored the high rate of terminations talked about children who'd exceeded expectations.

Indeed, the author writes of her four-year-old daughter: "I have been repeatedly surprised by her curiosity, her individual sense of humor and how much she has accomplished. She doesn’t fit the stereotypes at all. For this reason, it is troubling to me that rates of termination for pregnancies where Down syndrome is identified are extremely high."

But what if she was less able to 'do' things, to be accomplished? Is human value inherent, or tied to a person's abilities?

Readers who felt women had an obligation to abort a fetus with Down syndrome suggested children and adults who are less gifted and dependent have horrible lives. Further, they suck the life out of their families, they said, and dollars out of the health system.

It was hard not to feel the fear and hatred that leaked through these comments, the sense that people with intellectual disabilities were a threat to some collective social good.

Yesterday I heard Andrew Solomon, author of Far From The Tree, speak in Toronto. He talked about how differences that were once viewed as illnesses have come to be seen as identities. Deaf and gay cultures are prime examples.

To show us how far we'd come in accepting people with Down syndrome, he quoted this 1968 article from The Atlantic, written by a moral philosopher and theologian:

“People… have no reason to feel guilty about putting a Down's syndrome baby away, whether it's 'put away' in the sense of hidden in a sanitarium or in a more responsible lethal sense. It is sad; yes. Dreadful. But it carries no guilt. True guilt arises only from an offense against a person, and a Down's is not a person."

After reading the Motherlode comments, I couldn't help feeling that mainstream ideas about Down syndrome have not, sadly, evolved far from this depiction.

Most people don't acknowledge the disdain for Down syndrome they were raised on. They would never publicly state it. But hidden stereotypes can bubble up when we're less inhibited, for example, when we post anonymous comments on a news story.

They can also surface during times of confusion and fear, which seemed to characterize the deputies' response to Ethan Saylor (he used his second name).

Are deeply-rooted stereotypes that devalue people with Down syndrome also behind the relative silence—in the media and public—over Ethan Saylor's death?

You can sign a petition asking the Obama administration to investigate whether Ethan's civil rights were violated. And this petition calling for an independent investigation.

Monday, April 1, 2013

Where do families turn for services?

By Sheila Jennings

Canadian newspapers are making the public aware of the unmet needs of children with disabilities. According to the Toronto Star's recent Autism Project series: “Our journalists have uncovered an alarming array of policy omissions and holes in social services…”

Many of you are following the investigation by Ontario ombudsman André Marin into over 500 parent complaints about the lack of services for adults with developmental disabilities. “Quite clearly, what we’ve heard is that we’re failing in a pretty major way to support a very vulnerable segment of society,” Marin said in a related Star story. “It’s surprising that this is happening in 2013.”

According to a coalition of Ontario families and agencies, almost 9,000 families are on a wait list for Ontario’s Special Services at Home funding, with about 4,000 waiting for its adult equivalent—Passport.

Clearly there are policy issues that need to be looked at for young people of all ages with disabilities in Ontario.

In Canada, provinces and territories set their own public policies—and service eligibility for children with disabilities—and no two provinces have the same provisions. Alberta, for example, has quite different policy offerings for children with disabilities than Ontario. So bringing about national change in policy for Canadian children with disabilities is a complex issue.

Unfortunately, more than one scholar has noted that when children’s agendas are examined nationally, the concerns of children with disabilities are often excluded.

Families have tried to find solutions to these problems in a variety of ways. One has been by bringing cases to courts and tribunals. Unfortunately, many of the court cases brought over the last decade or so have not met with the wished for results—including for First Nations families who were in need of funding for children with severe disabilities.

Some court and tribunal decisions explain that courts and tribunals are limited in their ability to decide on policy matters about how programs are funded. They say they don't have the expert information at their fingertips when asked to make decisions about complex policies, and that making these decisions is the role of the legislature.

One recent case that’s excited parents and child advocates alike is the 2012 Supreme Court of Canada case Moore v. British Columbia (Education). It's been described by one Canadian expert as the most important human rights case in Canada in the last 10 years.

The Moore case involved a B.C. Human Rights Tribunal complaint filed by Frederick Moore on behalf of his son Jeffrey, alleging that the North Vancouver School Board discriminated against Jeffrey, who had severe dyslexia, by failing to provide the special education services he needed.

At the time, school officials told the Moore family that their son needed intensive intervention in order to learn, but that they couldn't provide it because the school district was closing its diagnostic learning disability centre.

The Moores withdrew Jeffrey from public school and placed him in a private school at great cost to the family.

At the Supreme Court of Canada, the tribunal’s finding of discrimination against Jeffrey by the school district was upheld. The school district has to reimburse the family for the costs of his private education as well as damages for Jeffrey’s harmful experiences.

In the Moore decision, Madam Justice Rosalie Abella said: “Adequate special education… is not a dispensable luxury. For those with severe learning disabilities, it is the ramp that provides access to the statutory commitment to education made to all children in British Columbia.”

The Moore case offers hope. It underlines the obligation of schools towards students with severe learning disabilities and as such is a step forward in advancing the rights of these students.

Sheila Jennings is a lawyer working towards her PhD at Osgoode Hall Law School in Toronto. Her research project considers the rights of children with severe disabilities and their mothers to support. Sheila is the single mother of three young adults, two of whom grew up with significant health conditions.