Friday, July 31, 2009

Locking kids up, tying them to chairs

A chilling article from the Atlanta Journal-Constitution crossed my desk yesterday. It’s about Jonathan King, 13 (right), a boy with ADHD who hung himself in a “time-out” room in an Atlanta, Georgia public school for students with behaviour problems.

Georgia is one of 19 states that do not regulate restraint and seclusion in schools, and don't have to report when and why they use them.

Following an investigation into their son’s death, Jonathan’s parents were shocked to learn that “time-out” meant confinement in an 8 by 8 concrete-block room where he spent hours alone, with no windows, furniture, bathroom, food or water. In a 29-day period in 2004, Jonathan was placed there 19 times, for an average of 1 ½ hours, and as long as 7 ½ hours. The Alpine School – which serves children with behaviour issues related to emotional disturbance, autism and brain injury – never told his parents about the seclusion, because they didn’t have to.

Although Jonathan had threatened suicide twice, school staff placed him in the room with a rope he had been told to wear because he didn’t have a belt. He used it to hang himself.

As a parent, I had my own experience with the unreported use of restraints at an Ontario school for children with physical disabilities 11 years ago.

My son Ben was in junior kindergarten. Most of the kids were bussed to school, but I drove Ben. I noticed another student was often put in a wooden seat with straps that came up and over her hips. The chair was designed for kids with poor motor control who couldn’t sit unsupported.

However, this child had no trouble sitting – in fact, the opposite. She was hyperactive and the chair was used to restrain her.

One day I went to pick Ben up at lunch and the kids were sitting in the class after lunch watching Barney. This girl was tied into the chair, thrashing around and sobbing. “Is she all right?” I asked the teacher. “It helps her to calm down,” she said. I left with a sick feeling in my gut.

I was horrified to walk into the class a few weeks later and find Ben sitting at an activity table in the same wooden chair.

When he saw me and tried to stand up, the hip straps pulled him back down.

I could feel the press of them against his legs. I was speechless, my eyes stung and I could hardly see straight.

"The children were told to go to one activity table and stay there, but Ben didn't listen," the teacher explained. "He kept moving from one table to the next." She undid the straps to release him. "We didn't want to give him a time out because then he'd miss out on the art project."


Is this what my son had been reduced to? A child who was tied to his chair? He was four years old. What if I hadn't walked in then?

Ben can’t tell me. Ben can’t speak.

“This must never happen again,” I said slowly, grabbing Ben and leaving. I put him in his car seat and sat in the front of the car and sobbed. Is my son so terrible that he must be tied to a chair?

Ben was swatting at his ears, a tell-tale sign of his recurrent ear infections.

Instead of driving home, I drove to our pediatrician. Sure enough, Ben had two roaring ear infections. I was too ashamed to tell the doctor that I found my son tied to a chair.

The next morning I kept Ben home.

I called the principal about the incident and he apologized, said it shouldn’t have happened and that he would talk with the teachers right away.

“Does the school have a written policy about the use of restraints?” I asked.


Putting a child in that chair is no different than giving a child a time out, he said.

“Yes, it is different,” I said. “The straps prevent him from moving, from standing up.”

The principal talked about a school he worked in where they had large kids with severe behaviour problems and had to “physically take them down” to the floor. In his mind, this was small potatoes.

“What about the blonde girl in the class?” I ask. “Do her parents know she’s regularly put in that chair to struggle and sob? What kind of message are we sending to the other kids about how to treat people?”

“The parents know about the chair and are in full agreement with its use,” he said. “She's hyperactive and there aren't enough adults in the room to ensure that she isn't a danger to herself or the other kids.”

“Lots of kids are hyperactive and they don't get tied to a chair,” I said. “Can you imagine if this happened in a regular school with a child with ADHD? Can you imagine a parent walking into their neighbourhood school and finding their child tied to the chair?”

“This wouldn’t happen in a regular school because a hyperactive child would have an assistant,” he said, “whose primary focus was to ensure their safety."

In other words, the thought of tying a kid to a chair isn't in the realm of the possible for a more "normal" child.

“Do the teachers document every time they put her in the chair?”


“How do I know that this won't happen to Ben again? Ben can't speak, he can't tell me when something bad happens.”

The principal assured me it would never happen again, and we moved Ben to a different school at the end of the year.

I assumed things had changed in the ensuing years, so I was surprised to go online today and find a 2006 resolution by the Ontario Minister’s Advisory Council on Special Education calling for the Ministry of Education to develop a provincial policy that outlines accountability, training, reporting and use of physical restraints as a last resort in schools. It notes: “There is no existing policy with respect to…use of restraints, resulting in widely inconsistent or non-existent policies across the province.”

I just spoke to Alison Morse, a parent member of the Minister's Advisory Council on Special Education, and she told me they hadn’t been able to make headway on a Ministry policy.

It’s been 11 years since my 4-year-old son was strapped – unbeknownst to me – into a chair so he couldn’t stand up. Had I arrived a little later, would the teachers have told me that they put him in the chair? They weren’t obligated to.

How can regulating the use and reporting of restraints and seclusion in schools not be a priority in every jurisdiction in North America?

Of schools like the one where Jonathan King died, an Atlanta lawyer in the Atlanta Journal-Constitution article says: “They’re essentially lawless.”

Wednesday, July 29, 2009

‘We don’t need to be perfect or normal’

Envisioning New Meanings is an art exhibit that tells the stories of women with disabilities – in their own words and images.

It grew out of workshops across Ontario where participants were asked: “How can art change perceptions of disability and difference?”

“Too often, we’re seen only within the narrow confines of two common stereotypes: the tragic, pitied victim, or the spirited survivor lauded as a source of inspiration,” says Lorna Renooy, who manages the project, spearheaded by the YWCA of Peterborough, Ont.

Taryn Green, 26, participated in a week-long workshop in Sudbury, producing a digital story about herself called The Triangle Girl. It’s based on a story she wrote at age six:

There once was a girl, she was made out of triangles. When she came home her mom laughed, because she was made out of triangles. Her dad laughed too, but her sister didn’t. When she went to bed, she prayed to God to make her look like the other people. When she woke up, she looked in the mirror and she was the same as everyone else.
“I’m not sure if I felt as though I was the Triangle Girl, but I did feel connected to her difference,” Taryn says in the video. “I understood the sadness she felt when others laughed. I understood her need for a happy ending.”

I interviewed Taryn, a recent graduate of film editing at Humber College, about the message she hopes The Triangle Girl conveys. Taryn has cerebral palsy. She had an awkward gait as a child and her speech can be a bit difficult to understand.

Me: Was there a time when you wished you weren’t different – like the Triangle Girl?

Taryn Green: When I was six, I knew there was something different about me, but I had an extremely supportive family and friends and teachers. It was more when I got into junior high and early high school that I started to feel more different. That’s when the bulk of the teasing took place. I was a very happy child, but there was a whole two years as a teenager where I never smiled in photos. I called it the dark ages. One of the biggest challenges when I began working was to overcome my fear of talking on the phone. People hear me on the phone and say: ‘Are you okay?’ ‘Are you sick?’ ‘Were you sleeping?’ ‘What’s wrong with your voice?’

Me: Is it significant that your sister didn’t laugh at you in your story?

Taryn Green: My parents never laughed at me either. But my sister was louder than me and always stuck up for me. One time a boy teased me and she said: “My sister didn’t talk funny. You just don’t hear very well!” She represented the people who were there for me growing up.

Me: Later in The Triangle Girl, you talk about her in a positive way and say: “I keep rewriting her. Now I don’t want to be like everyone else.” When did you start feeling it was okay to be different?

Taryn Green: Now I see the Triangle Girl as coming back in my life because it wants to remind me of who I am – that being different is a good thing. It was at the end of high school that I started to get happier, and as a result people gravitated toward me. When confidence exudes from an individual, people sense this and are drawn to that person. I believe this will ultimately change ideas about disability and difference.

Me: How has disability shaped you in a positive way?

Taryn Green: Although there were times when I felt sorry for myself, they’re minimal compared to the times I don’t think about it at all, or am happy I have a disability. I think my personality is different because of it. I think I’m more understanding, more patient, more accepting of others. My voice may not be as strong as others, but it taught me to be a good observer and listener and value comes from that. Instead of saying ‘I have a speech impediment, no one will listen to me’ I turned it around to look at it in a new light. I want to be a documentary editor and tell people’s stories. I like to be the one behind the camera or sitting and taking it all in.

Me: How do people commonly view women with disabilities?

Taryn Green: A lot of media portrays women in general in a certain mould and I think Envisioning New Meanings tries to show that not all women fit this mould and that there are many moulds. Everyone has their own shape, their own look, or whatever it is that embodies them. Everyone has their own voice, and it’s about listening to that voice. It’s about speaking confidently and proudly of who you are, and not hiding.

Me: Were there common themes in how the women in the workshop perceive disability?

Taryn Green: We talked about changing the way we see things, changing the way we view our disability. That there are different ways of going about things, and we need to be creative about how we approach a situation. If you can run, great. If you can wheel in a wheelchair, that’s great too – that’s running. Things don’t always have to be normal or one way.”

Me: By the end of your video, you say: “I am someone who can stand proud, confident and self-aware.” What message do you hope to convey?

Taryn Green:
There is a Triangle Girl in each of us that we shouldn’t hide from, but love. We don’t need to be perfect or normal. As you get older you realize we’re all individuals and being unique is what sets us apart from everyone in a good way. It’s the quirks that make someone up that I love. But we have to embrace and love our differences before others will accept and love us for who we are.

Me: What advice would you give to parents of children with disabilities?

Taryn Green: That their children don’t need to be fixed, they need to be accepted. Encourage them to participate and take part in activities that interest them – despite the severity of their disability. Everyone has something to contribute. Challenge your child instead of holding them back. Children love to be adventurous and they’re resilient. They need to at least try things in order to gain a sense of confidence. Let children speak for themselves. And if they can’t speak, they have their own way of indicating what is valuable to them. Never forget that the strength and support of a family is powerful. It carries children through to believe in themselves as they get older and during times of doubt or sadness. You can call upon it when you need it.

Me: Why is the Envisioning New Meanings project important?

Taryn Green: The project is making the wider public listen to women who might otherwise be cast aside or spoken for. What we truly got out of this project was a voice, one that will resonate with all who view the art.

For more information on Envisioning New Meanings, e-mail

Thursday, July 23, 2009

Is life with disability half as good as life without?

Every time I see an article written by bioethicist Peter Singer, my chest gets a knot in it.

Last weekend, his piece Why we must ration health care appeared in the New York Times Magazine, along with this description: A utilitarian philosopher's argument for placing a dollar value on human life.

The article is about why health care, as a finite resource, needs to be rationed in the U.S. It's about setting limits on what we're prepared to spend to save a human life or to reduce pain, so we get value for our money. Okay, that I get.

In order to compare treatments, we need a common unit to measure their benefits and Singer uses the “quality-adjusted life year (QALY).”

The QALY is a composite of the number of years saved by a procedure or drug (for example, saving the life of a teenager is equivalent to saving the lives of 14 85-year-olds, he says, because a teenager could live for 70 more years vs. the 85-year-old living for five) and the quality of those extra years. The idea, according to Pinning down the money value of a person's life, is that “a year in perfect health is worth more – both to the patient and to society – than a year spent in pain, depression or a wheelchair.”

Singer doesn’t clearly define what he means by quality of life, but implies it is synonymous with "an active life," and is diminished by medical conditions that limit function.

In order to compare how we might allocate resources, Singer suggests we consider how “most people” would rate life with a severe disability like quadriplegia, with life without. Would the average person have a hard time deciding whether they’d prefer five years of able-bodied life or 10 years with paralysis? If so, he says, what they're really saying is that life with quadriplegia is half as good as nondisabled life.

In this scenario, the QALY would rate a procedure that saves the lives of nondisabled people at twice the value of one that extends, for the same time, the lives of quadriplegics.

Looked at in a different way, the value of saving one able-bodied life would be equal to restoring function in two people with quadriplegia.

I have problems with this on two fronts.

First, the premise that reduced physical ability always translates into a less satisfying or happy life flies in the face of facts. A number of studies show that people with quadriplegia rate their quality of life as average or above average, and that they value their lives highly.

This is consistent with research in the world of child disability. For example, a 2007 study of 500 European children with cerebral palsy published in The Lancet found that eight-to-12-year-olds rated their quality of life no differently than children without disabilities. A similar 2007 study of 200 Canadian teenagers with cerebral palsy found participants' self-reported quality of life was not linked to their abilities or degree of disability.

“Is it surprising that subjective quality of life of children with cerebral palsy is similar to that of the general population?” The Lancet researchers asked. “Possibly, from the perspective of a non-disabled adult imagining what it would be like to be disabled, but probably not from the perspective of a child whose sense of self from birth incorporates their impairment and who embraces growth, development and living with the same excitement as most children.”

This leads to my second problem. Instead of relying on science to measure real quality of life, the QALY comes up with a score based on surveys of how "most people" predict they'd experience quadriplegia – without having lived it.

We know from recent "happiness" research that people are notoriously bad at predicting what will make them happy. In Stumbling on Happiness, Harvard psychologist Daniel Gilbert describes common blind spots in how we imagine the future. These include a lack of empathy that would allow us to imagine an experience different than our own and a tendency to overestimate the negative impact of an event and underestimate our resilience. This helps explain a study that showed sighted people will pay more to avoid going blind than blind people will pay to regain their sight. It also explains why most people assume they couldn’t be paralyzed and happy, even though surveys of people with quadriplegia show the opposite.

If someone had told me before my son was born that he would never speak, I would have assumed this was incompatible with a good life. Speaking is one of my great loves. “My son can’t handle it,” I would have thought, and, perhaps, more tellingly, “I can’t handle it.”

Imagine my surprise the first time I sat in a room with people who communicated effortlessly and richly with only their hands. There was great beauty in that silence, beauty I never would have experienced if I'd remained trapped in my narrow mindset. And because – before he learned sign language – I was forced to look deep into my son’s eyes to read what he was thinking, I discovered how much I missed in my old life, when I had to stuff every silence with words, because I was too afraid of what I'd find if I didn’t. Disability can stretch us.

Gilbert, in Stumbling on Happiness, shows that people are remarkably good at making the best of bad situations – by changing their views of the world in order to feel better about the world they find themselves in.

But for some reason we lack this insight into ourselves, he says, and don’t factor it into our predictions: we don’t believe we can adapt to something life-changing.

Given that many people with disabilities rate their quality of life highly, and given what science tells us about the mistakes we make when trying to imagine what will make us happy, why would we rely on the uninformed judgments of the average person to assess the value of a disabled person’s life?

And even if a happy life was determined solely by physical ability, does that mean the value or worth of a person’s life is diminished?

Should twice as many medical dollars be expended to save the life of an elite athlete over that of a couch potato?

What about a child with above-average physical function but a developmental disability?

Does reduced cognitive function lessen the value of a person’s life in Singer’s model?

If we asked “most people” whether living with a low IQ was as “good” as life with average intelligence, what would they say?

I bet “most people” haven’t had a close relationship with someone with a developmental disability – so they wouldn’t have direct experience to go on. Instead, they’d fall back on popular stereotypes. Singer himself equates human dignity with intellectual capacity in A convenient truth, an earlier article in the Times about the Ashley treatment. “... I find 3-month-old babies adorable, but not dignified. Nor do I believe that getting bigger and older, while remaining at the same mental level, would do anything to change that.”

Does this mean we should put fewer dollars into life-saving treatment for people with developmental disabilities?

People with disabilities face so many misconceptions about their experience. The QALY measure only perpetuates them by relying on a simplistic measure of “perfect” health. Being paralyzed or using a wheelchair doesn’t preclude being healthy or living a full life.

Physical function may contribute to a good life, but it’s only one of a myriad of factors. What about social conditions that can marginalize people? Perhaps Singer would like to survey people on whether they'd prefer to live five years white or 10 years black in the U.S.; five years rich or 10 years poor; five years as a man or 10 years as a woman.

Can a person's value be determined by race, income or gender, anymore than it can be determined by physical ability?

The QALY keeps things clean and simple and easy to calculate for economists by reducing quality of life to physical function – at the expense of people with disabilities.

I think Singer’s recipe for health-care rationing has sinister implications.

Thursday, July 16, 2009

What stresses parents of special-needs children?

A new study provides some unexpected results

Parenting kids with disabilities is stressful. But sometimes pulling apart what elevates parent stress, and how factors related to different types of disability contribute to parent stress, is trickier.

In a study published in the journal Autism this month, moms of preschoolers with autism reported significantly higher levels of parenting stress and psychological distress – general worry and anxiety – than moms of preschoolers with developmental delay (which was generally of no known cause).

“We wanted to find out what was driving the higher levels of distress in the moms of children with autism, and measured the impact of children’s problem behaviour and decreased daily-living skills,” says Annette Estes, lead author, clinical psychologist and associate director of the Autism Center at the University of Washington.

In both the autism and developmental delay groups, researchers found problem behaviour was associated with increased parenting stress and psychological distress. But to their surprise, children’s need for greater physical care – in areas like feeding, dressing, toileting and bathing – was not.

“I expected that both together would be related to stress, but the study shows that it isn’t the hard work of caregiving that’s stressful,” Estes says. “Parents seem to be resilient to the hard work – and also to comparing their kids’ daily-living skills to other kids’ skills.”

Estes says the study points to the need to target difficult behaviour – no matter what the diagnosis – as a top priority in early intervention. “Autism affects every domain of functioning, and yet you can’t do everything at once. If you have a child with problem behaviour, that should rise in terms of priority of treatment – because not only will it help the child, it will help the family.” Problem behaviours measured in the study included irritability, hyperactivity, crying, inappropriate speech and not being able to follow rules.

A third somewhat unexpected finding of the study was that the relationship between problem behaviour and stress was less pronounced in the group of moms whose children had autism.

“While the overall stress levels on both measures were higher in moms of children with autism, the relationship between problem behaviour and stress was stronger in the moms of children with developmental delay,” Estes says. “Problem behaviour still accounted for quite a bit of stress in the moms of children with autism, but it doesn’t explain the whole picture.”

More study is needed, she says, to identify other factors that contribute to high stress in moms of kids with autism. Is it the demands of intensive treatment? Is it public misperceptions about the disorder? Is it social deficits that make it harder for parents to connect with their child?

Stress in parents may also change over the lifespan, she notes, and this study only surveyed mothers of preschoolers. Fifty-one children in the study had autism and 22 had developmental delay without autism.

The families were part of a larger study of the neurobiology and developmental course of autism. “Many of the families have been involved in the study for 10 years and we’re starting to get a lot of longitudinal data that can help us answer some of these questions. I don’t think a lot is understood about how stress and coping work over the lifespan, and that’s the next step.”

What do you think of these results? Do you find coping with challenging behaviour in your child more stressful than physical caregiving? Click on Comments to post. If you’re a mom of a child with autism, what most stresses you?

Friday, July 10, 2009

Ballet in the water

Patty Daly contacted me to tell me about a sport that welcomes children with disabilities: synchronized swimming.

Patty’s daughter Lauren, 18, has cerebral palsy and has been doing “synchro” since she was 10. Her duet partner – Nicole Flynn, 16, has Down syndrome, and the pair compete in Ontario and nationally (see photo).

The sport has had numerous benefits for Lauren “and I would like to get the word out to other families so they’re aware this opportunity exists,” Patty says.

Synchro Canada says clubs across the country have programs for athletes with disabilities – many integrated into regular programs. Our next issue of BLOOM will include a role model column with Lauren and Nicole. Here’s what Patty has to say:

“Synchro has given Lauren a sport that she’s been able to excel at, the opportunity to swim with peers, confidence to swim in front of an audience and most importantly, she sees the rewards of doing therapy.

Before the girls head into the water, they do land drill, which includes stretching and strength-building. It’s the same in essence as what Lauren would do in therapy, but it isn’t labeled “therapy.” All of the able-bodied athletes do it with them, so they aren’t singled out as a result of their disability.

When Lauren has her appointments at Bloorview, they’re always amazed that someone with her disability is as flexible as she is and is able to do the splits. I have tried to get the word to these doctors that this is all a result of synchro.

Synchro has given Lauren confidence in school as well and has taught her how to manage her time (if she didn't get her homework done, she wasn't able to go to synchro). She’s successfully completed her training as a lifeguard and spent the last two summers working at an overnight camp. She’s also a member of her high school swimming team, advancing to the provincial championships every year.

This coming year, Lauren and Nicole (her duet partner) are hoping that they might have the opportunity to swim in Japan!

Every synchro club is encouraged to include swimmers with physical and cognitive disabilities. In the water, disabilities are not as pronounced. The coaches work with each child to maximize their ability.

I think there are other parents out there who have children who could greatly benefit from synchro if they only knew about it. ”

(note: Synchro Canada’s Aquasquirt program is open to boys and girls)

Thursday, July 2, 2009

At a dark time, bringing light

Sue Robins remembers what it was like to learn her son Aaron had Down syndrome shortly after his birth.

“We didn’t reach out to anybody. I remember lying in bed and thinking I wouldn’t get out of bed again. I was never going to laugh again or have a sense of humour. All the joy in my life had been taken.”

Six years later, she knows what would have helped: connection with another parent of a child with Down syndrome – someone who understood how she felt and could impart a sense of hope for the future.

When Aaron was five months old, Sue contacted the Edmonton Down Syndrome Society (EDSS). She asked to be connected with other moms of babies in the area and started an informal playgroup. Two years later, Sue co-founded the Visiting Parents Program at the EDSS.

Today, the volunteer program has 16 trained parents – including four dads – and has made 31 visits. The program is targeted to parents of a new baby with Down syndrome, but also serves parents who have received a prenatal diagnosis or who have a child with Down syndrome and are new to town.

I interviewed Sue about the program.

Me: What’s the purpose of visiting parents?

Sue Robins: To give information and support to parents who often feel very alone. Even at the time of birth, if there’s a question mark that the child may have Down syndrome, the parents are shuffled off to the private room at the end of the (maternity) hall, so right from the get-go they feel different. Our presence helps them know that they’re not alone. We want to celebrate the baby’s birth and sometimes that gets missed in the medical community, where the baby is looked at as a tragedy. We’re excited about meeting the new babies and holding them and for some parents that’s the first time that’s happened and it’s very powerful. We help normalize their experience.

Me: How does your program work?

Sue Robins: Most parents contact us by e-mail through our web site, but we also get calls from pediatricians’ offices, hospitals and genetics clinics. Within 24 to 48 hours we’re in touch by telephone. Sometimes a phone call is all parents need. If they’d like a visit, two of our parents will meet them where it’s convenient – in their home, the hospital, a coffee shop. We like to bring a gift. Depending on the family's needs, it may be a book of parent stories called Gifts: How Children With Down Syndrome Have Enriched Our Lives, or a more medically-oriented book. Sometimes we bring a baby blanket.

Me: What are the most common questions you get at visits?

Sue Robins: A big one is how is “how do I know how severe my child’s condition is?” We explain gently that there’s no way of knowing how your child will turn out, just like with any other child, it depends on a lot of factors. Many parents see the baby and not the Down syndrome, and they worry about when others will start to ‘see’ Down syndrome in their child. They want to known if people stare at the mall. Often there are concerns about how to tell friends and family. We let them know there’s no ‘right’ way to approach these things, it’s something many parents struggle with, and give them permission to figure it out in their own time. We share examples of what we and other families have done. Sometimes they want information on services.

Me: What can a parent offer that a professional can’t?

Sue Robins: We’ve walked down the same path these parents are on and a lot of what we impart is hope. We value and feel there’s worth in our children and we model that. We demonstrate that life goes on. We complement the role of health professionals by providing the human piece. Only we know what it’s like to have kids with Down syndrome.

Me: Are there key things you try to convey in your visits?

Sue Robins: We don’t want to talk too much. We want to listen and to be open and non-judgmental. Parents can be totally honest with us. We’re there to answer questions. We want them to know they’re not alone, that they’re well supported with services in Alberta, and we like to give them a little glimpse into the future, if they’re open to that. We bring a little photo album of our kids and leave it on the table. If they want to look at it they can, but they don’t have to.

Me: What kind of impact do you have on parents?

Sue Robins: I hope we lighten their load. I remember one visit we did in a hospital NICU where the father of the baby left after learning the baby had Down syndrome. When we first met the mom, things were really heavy and sad. One of us was cuddling the baby and at the end of the visit, the mom had a good cry – and we cried a bit too. We say it’s okay to cry. The social worker later told me that when the mom walked out of the room with us, she looked lighter, she acted lighter. We had helped take some of that burden off her.

Me: What do you get out of visiting new parents?

Sue Robins: I’d love for every single parent to feel supported. Part of my healing process is to ensure that my experience of feeling alone at the beginning isn’t what others experience. That’s very rewarding to me.

Me: How did you start the program?

Sue Robins: Another mother and I went to Calgary to hear about a visiting parents program there. On our drive back, we decided we wanted to bring the idea to Edmonton. So we brought a trainer from the Canadian Down Syndrome Society to run a six-hour workshop with the first eight parents on our team. We wanted to have a formal program where everyone on the team is trained. Professionals have to believe we’re competent in order for it to work.

Me: Are programs like this offered across the country?

Sue Robins: Not consistently. Most support groups do some sort of visiting but it’s informal. We’d love to share what we’ve learned with others who are interested in setting up formal programs. We have lots of resources.

Sue can be reached at She’s speaking on the Visiting Parents Program at the World Down Syndrome Congress in Dublin this summer.