'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."

Read More

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.

Read More

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

Read More

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.

Read More

Bad Animals: Joel Yanofsky on World Autism Day

Read More

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.

Read More

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.

Read More