What works in children's rehab, and why, is researcher's passion

By Louise Kinross

De-Lawrence Lamptey has a PhD in rehabilitation science and a master’s degree in clinical psychology. He has right-sided weakness related to cerebral palsy and grew up in Ghana. “When I was growing up I was less aware of my disabilities than I am now,” he says. “I was born with a disability, but I was never raised as a person with a disability.” De-Lawrence is a postdoctoral fellow doing research in inclusion and participation at Holland Bloorview with senior scientist Gillian King.

BLOOM: How did you get into this field?

De-Lawrence Lamptey: I was born with a disability. I have a form of CP that affects my right arm and leg. But I grew up in Ghana feeling I was just as normal as any typically developing child.

BLOOM: Doesn’t that culture hold negative attitudes about disability?

De-Lawrence Lamptey: Yes. They attach superstitious beliefs to disability, so they believe it’s caused by a sin or a curse. I was teased, but it didn’t affect my goals in life, or the way I perceived myself. My identity was formed in my family, as opposed to the culture around me.

A second barrier I faced was that I’m left-handed, and in Ghana using your left hand with people in your interactions is culturally considered a sign of disrespect. So if I raised my left hand to answer questions in school, some teachers wouldn’t take my answer because they weren’t aware I was disabled.

In the culture, if you want to use your left hand in interactions you're expected to apologize beforehand, in order not to make people feel disrespected. Can you imagine if I had to say ‘I’m sorry I used my left hand’ to everyone I interacted with on a daily basis? I didn’t do that, so many people thought I was being disrespectful, especially those who weren't immediately aware that I had a disability.

I give a lot of credit to my mom. I was allowed to do everything, and I wasn’t overprotected. I wanted to do what I saw everyone else doing, so I learned how to ride a bike and to play the bass guitar, the drums and the piano. I felt whatever I wanted to do was possible and that things shouldn't be easy before they can be possible for me. I had a supportive family who said ‘Go for it.’

My mom told my teachers in school not to treat me any different from the other kids, so my teachers weren't overprotective either. This made my classmates more accepting because when we got into trouble during play we all got the same amount of punishment. And this made me feel no different from the other kids as well.

The only issue was that equal treatment didn't always take into account what I couldn't genuinely do because of my disability, and so it was cruel sometimes. It also meant that I had no accommodations, which was lacking in Ghana anyway. So you either learn to swim or you drown. In a way, this encouraged me to think out of the box to learn how to live without accommodations and still thrive.

BLOOM: What made you want to do research about children with disabilities?

De-Lawrence Lamptey: In Ghana, many adults with disabilities beg on the streets. If I was begging on the streets, I would be classified as a person with a disability. But when I did an internship in clinical psychology and families came to see me at the hospital, they felt I didn’t classify as a person with disabilities. They would say ‘You’re not disabled.’

It meant disability was not how I looked, but what I could do. That shifted my focus. It made me realize it’s what we do with children that would eventually decide whether they will beg on the streets, or not, in adult life. If I put myself in the shoes of those begging on the street, and grew up in their family, maybe I would have ended up in the street. I needed to get into pediatric rehab where I would be able to look at how to promote inclusion and participation of children with disabilities so they could reach their optimal potential.

Eliminating barriers in society is very critical, but sometimes it can be difficult to do in the short term. For example, initiatives to remove attitudinal barriers  have been going on for years and some progress has been made, but we still have a long way to go. Another example that takes time is redesign of existing architectural structures.

So if we can’t remove the barriers in the short-term, is it possible to work with children to help them work around the limitations of their disabilities, and the social barriers they face, to reach their optimal potential?

How can we teach children to be able to say, regardless of the barriers I face, that I should strive to live to my full potential? That’s why I was interested in working with Gillian on some of her resilience projects.

BLOOM: You mentioned you’re writing up a paper here about a study that looked at parents’ expectations of residential life-skills programs. For example, our Independence Program has youth spend three weeks living on a university campus. Why was there a need for this study?

De-Lawrence Lamptey: Even though residential life-skills programs have been going on for a long time, and people have studied various aspects of them, what parents expect their children to achieve, or the program to deliver, is relatively unknown.

How participants do after they go home to their family depends partly on the expectations of the family. I grew up in a family that was less protective. But what if parents have low expectations that their child will acquire certain skills? We want to be able to add valuable knowledge to improve the program, so that parents are better positioned to give their children the best support.

BLOOM: What kind of research do you most enjoy?

De-Lawrence Lamptey: I’ve been privileged to work in the world of describing and evaluating programs. I like to identify best practices in program design and delivery. I enjoy looking at what impact a program actually has on clients and families, for the purpose of using that knowledge to improve.

This research helps you do two things. One, most of the time when we look at the services we’re providing, we don’t know what is working, or even when it’s not working. And if it is working, we don’t know why. Every child is so different that even though most of the services we provide are evidence-informed, they may work for some and not for others. It’s very important that we optimize the service for a large group, so we can share the knowledge around the world about the effects of the program.

Second, this kind of research gives accountability to funders of the program. They need to know what impact the program is having to determine whether to continue funding it or, if it’s not working, what are the ways we can make it better.

BLOOM: What’s most challenging about your research?

De-Lawrence Lamptey: It’s mostly work I do sitting in front of a computer and typing, so sometimes I don’t have that much of a social life. I’m always working at a computer or reading and I’m always thinking. It can be difficult to turn it off. Even when I’m on my bike I’m thinking about the paper I’m writing, and if an idea comes to me in the subway, I have to write it down so I don’t forget. Subconsciously my mind is always working.

BLOOM: I read an article yesterday by a disabled researcher who said that people working in the field often don’t have disabilities, and tend to view themselves as experts, instead of listening more closely to people with disabilities.

De-Lawrence Lamptey: We all have different experiences. I have been fortunate to overcome many barriers to get a PhD as a person with a disability. People with disabilities face multiple barriers that make it difficult for them to acquire the necessary expertise to do the level of research we do. So it’s very important that we work together.

The greater challenge, I believe, is that the research we produce should make a lot of sense to users. But unfortunately, if we write in a language that makes sense to people with disabilities or service providers, it can limit the chances of it being accepted for publication into a scientific journal. Every discipline has their own language that they use. So I’m torn. To rise in my career, I need to publish. But that means writing in a way that people who need to implement the research may have difficulty understanding.

BLOOM: It bothers me that the research world makes itself exclusive by using jargon that the average person can’t understand.

De-Lawrence Lamptey: I think it's really important for us to write in a way that everyone can understand, especially those who use the knowledge.

BLOOM: What kind of work do you want to do in the future?

De-Lawrence Lamptey: The work I want to do ultimately would be to look at how we could mobilize resources to help people with disabilities in under-served communities in Western countries and in developing countries. I feel the world has given me a lot and I need to give back, and giving back means giving back to people who are most in need.

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Research day challenges dominant ideas about human value

How ironic that on the day Holland Bloorview research head Tom Chau encouraged us to "push against typifying perspectives" in our work, CBC's The Current was interviewing bioethicist Peter Singer on his view that parents should not be "stuck with having to look after a severely disabled child."

You can watch our Bloorview Research Symposium live-streamed here, and it is well worth a watch. Louise

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How one mom embraces a new life in Canada

By Louise Kinross

In 2013 Sharda Ali-Ramjattan moved from Trinidad to Toronto with her daughter Selina, 9, in order to access better health services. Her husband Danny and son Saeed followed two years later. Her daughter Selina, now 12, has a rare genetic condition related to the TUBB3 gene that was only diagnosed recently. Sharda talked to BLOOM about why they made the move.

BLOOM: Why did you decide to move to Toronto?

Sharda Ali-Ramjattan: So that Selina can have the resources and treatment she really needs. We want to help improve her quality of life and to help her gain whatever independence she can, no matter how minute. At the time, Trinidad doesn’t have the treatments and facilities we wanted for Selina. There was only one school program we liked, but Selina couldn’t go there because the children had to be able to do their own self-care. The schools for children with disabilities were private and expensive. Selina had never been to school before coming to Canada.

We hired a nurse or workers during the day in Trinidad, and we worked in close proximity to home so we could check in on her. From 2007 to 2012 we came to Toronto for two months every summer to get her private physiotherapy. We stayed with my sister, who lives here. Selina had therapy once or twice every day. In Trinidad the only physio offered through a hospital was once every three months.

BLOOM: What other things can you access here, that weren’t available in Trinidad?

Sharda Ali-Ramjattan: Almost everything. Selina never had a wheelchair in Trinidad. Here she has a wheelchair, ankle-foot orthoses, dental and vision care. She sees a developmental pediatrician and has been seen by augmentative communication. She’s also seen physical and occupational therapists.

BLOOM: Tell us about Selina.

Sharda Ali-Ramjattan: She can’t walk or talk, and she’s intellectually delayed. She has a seizure disorder and suffers with scoliosis. She wears AFOs. She doesn’t speak and she shows no interest in communicating.

BLOOM: Are there ways that you can read how she is feeling?

Sharda Ali-Ramjattan: Yes, we understand her. If she’s irritated or frustrated, or something is happening that she doesn’t like, she’ll pull on the back of her hair. If she’s excited and happy she will bite on her hand. If she’s hungry she will put her hand in her mouth and make what we call a ‘froggy’ noise. We can understand the tone of her babble. If she’s carrying on, she’s upset or quarreling. And then sometimes her tone is very loving and she wants to hug and kiss you.

BLOOM: What does Selina like?

Sharda Ali-Ramjattan: She loves music. She has rhythm and will dance with the rhythm. She likes to drive around and be outdoors. She loves her family. She likes nice food and to be on the playground. She likes swimming and sledge hockey.

BLOOM: How is disability viewed in Trinidad?

Sharda Ali-Ramjattan: When we lived there Selina was smaller and she was in a stroller, so her disability wasn’t as noticeable. We went back to visit in March and now she’s in a wheelchair. We take her everywhere with us and people would stare. It was almost like what we were doing was offensive. They keep people in wheelchairs inside, hidden away from the world. Very few places are wheelchair accessible. That made me even more sure that we made the right decision in moving here.

BLOOM: What was the most difficult part of moving here?

Sharda Ali-Ramjattan: I came here alone, because we were applying for permanent residence and we didn’t know what the outcome would be. That was one of the most difficult things. I only have my sister here and most of my family is back there. You miss where you grew up. We had our own business and a fantastic life in Trinidad. But we had to sacrifice that for Selina. I believe Selina was given to us by God, and we are responsible for her and need to do everything we possibly can, with whatever resources we have, to make sure she gets the absolute best care.

In Trinidad we both had careers. Here, we made the decision that whoever got a better-paying job would work, and the other would stay at home. Right now I am with Selina.

BLOOM: Was there anything that helped you adapt when you first came here?

Sharda Ali-Ramjattan: Selina goes to the Scarborough Village Alternative Public School. It has a mixture of regular and disabled kids. I volunteer there, and I learned a lot from them. The educational assistants and teachers helped me when I was a single parent living here alone. I learned how to handle Selina when we go to the mall or the park and how to handle changing her. I go on field trips with them. I learned to call facilities way in advance to find out how accessible they are, and to see if there would be an attendant there to help me. Sometimes we are able to get special parking.

BLOOM: You are a family leader at Holland Bloorview. Why did you get involved?

Sharda Ali-Ramjattan: In Trinidad, my husband and I were always busy with our careers and we had limited time to volunteer. When I came here and didn’t have permission to work, I had time when Selina started school. We were at an appointment at Bloorview and my husband, who was visiting, saw one of the Family Leader cards and said: ‘Why don’t you apply to this?’ We wanted to give back something. We came here and have received so much—so many services and treatment and guidance. It gave me an opportunity to give back in a true way.

BLOOM: What do you enjoy most about being a family leader?

Sharda Ali-Ramjattan: I enjoy getting a different perspective on disability as a whole and meeting all of these wonderful people who dedicate their time to help children and people with disabilities. Where we came from, that was foreign. I enjoy the enlightenment—meeting different people and getting a broad perspective—and the focus and commitment of each person. It’s really encouraging as a parent.

BLOOM: You sit on the Research Family Engagement Committee (RFEC). What is that like?

Sharda Ali-Ramjattan: I was very hesitant to join the RFEC because I had absolutely no experience with research. But Lori Beesley thought that I would be a good fit and so I agreed to try it. At first I was intimidated being surrounded by such great minds, and wondered what I could contribute. But I quickly learned that my contribution as a parent of a child with special needs was, in fact, very valuable. And I can represent other families who are not able to participate.

BLOOM: Selina requires a lot of care. How do you take care of yourself?

Sharda Ali-Ramjattan: Physically it does take a toll, and sometimes I do feel burned out. I do things that make me happy. While I’m in the kitchen cooking, I put on music according to my mood. I’ve already started looking at Christmas shows when I need a pick-up. Every night we look at a Christmas movie. Sometimes when my husband and I take Selina down to the bus, afterwards we’ll walk over to Timmy’s and have a coffee. My husband and son are a great support. 

We don’t have a lot of money, so I go to the dollar store and I find things to decorate my home and make it a nice place. I decorate for Thanksgiving or Valentine’s day. It changes the atmosphere. When Selina brings home stuff from school I put it up in my dining room.

Five mornings a week, when Selina is in school, I go to the gym and do whatever class they have: Zumba, yoga, spin. When I first went to the gym they asked me what my goal was and I said: ‘To build my strength so it can help me to manage with my growing daughter, and to keep up my health.’ I have bad back problems. It’s great to go out and meet people and I try to take something away from each of these experiences. It raises your self-esteem and confidence and that’s the feeling I want to emit to Selina. I don’t have money for a personal trainer but I get ideas from other people at the gym and I buy magazines.

There were times when I was first here with Selina when I wanted to give up. I was sad and depressed. But we stuck it out. Positive thinking can take you a long way. You have to see the beauty in what you have. You have to appreciate what you’ve been given. I like to have happy things around me.

BLOOM: Do you ever get respite care for Selina?

Sharda Ali-Ramjattan: No, we don’t do that. If I’m away from her I miss her. I do find it helps to have a personal support worker come while I’m there. I can enjoy the time with her but the worker can give her a shower. I look at everything I do with Selina as time to bond with her. If I’m sitting with her and feeding her, I don’t just give her food. I talk with her, I tell her I love her. I communicate with her and she will communicate with me. I make it an experience. I think of things that we all enjoy. Last night I got this e-mail about seeing the tree lights at Nathan’s Phillips Square. It gives me something to look forward to.

I depend on God a lot. I turn to him. That’s my one true relief.

Sharda Ali-Ramjattan would like to start a parent support group for families of children with TUBB3-related disorders. Please e-mail her at saliramjattan@gmail.com.

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Why child disability research belongs in mainstream journals

By Louise Kinross

Children with disabilities are two to three times more likely to have obesity than their peers.

Yet when Holland Bloorview scientist Amy McPherson looked at a systematic review of studies about obesity prevention in kids, most excluded those with disabilities.

“If you’re testing a new way to get kids active, you may shy away from recruiting kids who physically struggle because that will affect the data,” Amy says. “It may be less likely to show your intervention can work. But if we exclude children with disabilities from these studies, how will we develop interventions for them?”

One way to raise awareness of pediatric rehab research, which is a young field, is to send papers to general medical and clinical journals, rather than just disability journals, Amy says. But it’s not easy to get a paper accepted.

Comments from expert reviewers, who assess the rigour of a paper, often reflect a lack of understanding about the unique challenges and opportunities of disability research.

“For example, a reviewer recently suggested a colleague exclude children who are not verbal from her study, instead of relying on parent reports,” Amy says. “But these are our patients. If we’re developing interventions, we can’t cherry pick patients. We can’t inform change if we don’t take diversity into account.”

A common reviewer criticism is that a study doesn’t use outcome measures that have been tested on children with disabilities. “But most measures are developed for typical kids,” Amy says. “When we try to develop ones for our kids, we’re told the numbers are too low. We’re caught between a rock and a hard place.”

Amy notes that reviewer comments sometimes reflect the expert’s own biases. For example, she submitted a paper on a study to evaluate the effectiveness of coaching to improve diet and physical activity in boys and men with Duchenne muscular dystrophy.

One reviewer said that to ask participants to identify a “preferred future,” which was one part of the intervention, was callous, because the condition is degenerative.

“We were enrolling kids aged 10 to 19, and people with Duchenne can live till their '30s these days. Health and wellness coaching is important for everyone, especially those with a disability. We want to empower clients to identify personally meaningful goals, hopes and aspirations for the future. Whatever it looks like, young people with disabilities have a life. They deserve to get the best possible care, and we do that through research.”

One way to gain acceptance into mainstream journals is to partner with a wide variety of clinicians and researchers across disciplines, Amy says.

Getting her national, call-to-action paper on weight in children with disabilities published in Childhood Obesity—a prominent, mainstream obesity journal—is an example.

“This paper was the result of efforts from people across many disciplines, life experiences and backgrounds,” Amy says. “Collaborations like this show the broader implications that disability research can have. For example, learning how to best support kids with a wide range of abilities to lead healthy lifestyles can be useful for those working with typically developing kids who benefit from a more individualized approach. It can also support doctors who may only see one or two kids with disabilities a year and wouldn’t routinely look at the rehabilitation literature."

Amy says we need to continue advocating within the broader science community to find common ground in research on children with and without disabilities.

“Sometimes when we submit a paper to a journal or present at a conference, we get responses that question the value of doing research in kids with disabilities. Our sample sizes are small. Our kids are a different population, but there are ways to include them, or to report the data differently. As researchers, we have a shared accountability to make a difference in the lives of children with and without disabilities.”

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A dad pedals his son 600 km in search of a cure

By Megan Jones

It seemed to come out of nowhere. Only in retrospect, Andrew Sedmihradsky says, did the signs of his son's disease become clear. It started after Max (in cargo bike above) learned to walk. Andrew, along with his wife, Kerri, noticed their son would fall often—and hard. Still, being first-time parents, initially, they didn’t worry. 

The falls didn’t stop, so the pair took Max to see a few different doctors. But when none of the professionals seemed too anxious about their son’s tumbles, the couple, who lived in Australia at the time, decided not to overthink the situation.

Then, in June of 2013, a daycare worker who had noticed Max’s lack of balance approached the family, insisting they bring the youngster to a doctor one more time. Soon after, Andrew took a few hours off work to bring his son in for an appointment with a pediatrician. Even that day, he felt unconcerned. We’ll get this over with, then do something fun for the rest of afternoon, he remembers thinking.

But after examining Max, the doctor quickly suggested the boy may have muscular dystrophy. The family was referred to a nearby hospital, and a few days later, a blood test confirmed the Andrew and Kerri’s worst fears: Max had Duchenne muscular dystrophy.

Duchenne is a life-limiting genetic disorder that causes muscle weakness because the body can’t make a protein called dystrophin. Duchenne weakens the legs and hips, and eventually the heart and breathing muscles.

“It was just devastating. It was impossible to sleep,” Andrew says “We had to listen to podcasts just to take our minds off of what was happening.” For a while the couple felt inert with shock, anxiety, grief. Finally, sick of feeling helpless, Andrew insisted the family get out and do something fun. They went to a museum in Melbourne. It felt good to get out of the house.

“All we’d done up to that point was wait” Andrew says. “Although it hadn’t been very long, I felt it was important to get up and fight this.”

Last year, since moving to Canada, the clan started Max’s Big Ride, a charity bike ride to raise money and awareness for Duchenne. All proceeds go to Jesse’s Journey, a registered organization committed to finding a cure for the disease.

For the past two summers, Andrew has steered a carrier bike (with Max—now five years old— in the front car, naturally) 600 km from Ottawa to their current hometown, Hamilton, Ont. Kerri, Andrew's parents and Max’s baby sister, Isla, have followed along in a van, delivering food and drinks, providing emotional support, and sorting out accommodations.

The family has also hosted Max’s Big Climb, a competition where professional cyclists collect sponsorship and race up a steep hill in Dundas, Ont.

Together, both events have garnered donations from places like France, Japan, the States and the U.K., and so far, the family has raised upwards of $100,000. They’ve also attracted the attention of a few prominent Canadians: recently, Max received a letter from Prime Minister Justin Trudeau, and this summer, he met with Toronto Mayor John Tory.

“It seems a bit surreal,” Andrew says. “Last year I created a website for Max’s Big Ride in my basement. I wasn’t sure if it would take off. And now the leader of our country knows about it.”

Andrew says the event was inspired by the bike rides the family used to take when they lived in Australia. Max loved sitting close to his father as he pedalled around. A long ride seemed like the perfect way to get attention for Duchenne, while providing ample time together. They keep each other company on the road, Andrew telling stories and Max talking about his hopes for the future (he says, for example, that he wants to start a band with his family).

On top of successfully raising money, Andrew says he’s found comfort and hope along the road. As they pass through cities, they’re regularly greeted by fire departments or groups of volunteers. Sometimes, they’re given food or other gifts—everyone wants to chip in. Most inspiring is when Andrew meets parents whose own children have muscular dystrophy. Often, he says, they insist on donating to Max’s ride.

Since the past two rides have been such positive experiences, Andrew says he hopes to do another next year to continue getting their message out. In particular, he hopes to get the attention of more politicians. As more experimental drugs become available, he says, families will need government support to cover costs.

***

While Andrew and Kerri are educating Canadians about Duchenne muscular dystrophy, they’ve yet to talk to Max about his disease.

Max knows his muscles are weaker than other kids,’ Andrew says, and that’s why he takes medication. But he hasn’t asked about an underlying cause.

They've decided to cross that bridge when they come to it. It’s an attitude Andrew tries to apply broadly while parenting a child with disabilities. “I try not to think about the worst-case scenerio, or fantasize about the best-case scenario,” he says.

He recommends that parents whose children have disabilities give themselves breaks, and that they reach out to others for support whenever possible. For him, the key to staying hopeful while continuing to address the difficult realities is to take things one day at a time. “I try to focus on the here and now, because that’s what I have the power to change.”

I think that there’s hope,” he says. “I wouldn't be doing this if there wasn’t.”

Follow Max's family on their blog.

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A problem focus misses 'the opportunity to get kids to thrive'

By Louise Kinross

Dr. Evdokia Anagnostou is a neurologist and clinician scientist in the Autism Research Centre at Holland Bloorview. She is also a Canada Research Chair in translational therapeutics in autism. We talked about her role in clinic and conducting research.

BLOOM: Why did you get into working as a clinician scientist with children with autism?

Evdokia Anagnostou: It started as a puzzle. When I was training as a resident in neurology, I was used to seeing a child and, based on the signs and symptoms, knowing which part of the brain was involved. If the child couldn’t move their right arm, I knew it was a part of the brain on the left side that was responsible. For most problems in child neurology we can identify the location, and sometimes the nature of the difficulty, based on signs and symptoms, before ordering tests. But when it came to autism, there was no way of figuring out what was happening in the child’s brain based on signs and symptoms. It was curiosity that got me into it.

BLOOM: What does a current day look like for you at work?

Evdokia Anagnostou: My current schedule is 20 per cent clinical—so I see 10 to 12 kids in clinic one day a week—and four days or 80 per cent is research. On a typical research day I’m seeing kids who are coming to be part of research protocols, writing and reviewing grants, writing papers and analyzing results, and meeting with granting agencies, government organizations and senior administration.

BLOOM: What is most rewarding about your job?

Evdokia Anagnostou: I think I have the best of both worlds. I get to work really hard to invest in the future of children with neurodevelopmental disorders by doing research, but I also get to contribute to the lives of kids right now by keeping my clinic day active. So I feel like I’m contributing on a day-to-day basis and to changing the future.

BLOOM: What is the greatest challenge?

Evdokia Anagnostou: Managing a balance between clinical and research time. Let’s say I see a child during clinic day on Monday, but that kid gets into trouble on a Thursday, which is a research day. I can’t say ‘I’m sorry, I can’t do anything until my clinic day.’ We need to meet the needs of the kids as they arise.

Another would be building a large research group based on research funding, and making sure you don’t lose that funding. You have a whole group of 15 to 20 people depending on you for their job. There’s constant grant writing and running after funding agencies to maintain or increase our funding.

Another challenge is figuring out how to do the most you can with the resources you have. On the clinical side, there are what we think should be standard services that are unobtainable given the envelopes of money we have from the various ministries. So figuring out how to meet the most needs with the money we have, and being creative about it.

Finally, it's challenging trying to develop therapies without fully understanding the biology of the differences we see with autism spectrum disorders

BLOOM: Which of your research projects is most promising?

Evdokia Anagnostou: Our most promising project is with the Province of Ontario Neurodevelopmental Disabilities Network (POND). That’s because the network admits that we don’t understand how a variety of neurodevelopmental disorders like autism, ADHD and intellectual disability are different in terms of their biology. So POND takes the approach that we are going to understand first the biology by understanding the genetics and brain structure and function, irrespective of what diagnosis the child has. And then develop treatments for that. It’s most promising because sometimes we label kids for a variety of reasons in ways that don’t necessarily reflect what is happening in their brain and therefore our treatments tend to fail.

BLOOM: Have your thoughts about autism shifted over the years?

Evdokia Anagnostou: I started thinking of autism as a neurological disorder. I still think it’s a group of neurological disorders, but right now I’m much more aware of it as a difference than a disorder. I’m aware of all of the distress and dysfunction it can produce in kids and families, but I’m also aware of the strengths it can produce in certain areas and the value people with autism see in their difference.

BLOOM: How could we better support parents of kids with autism?

Evdokia Anagnostou: I think this is an area where we have done particularly poorly. The needs of parents of kids with autism and related problems vary from learning skills to help their children to learning how to see the strengths and beauty in the difference to getting support from other parents and understanding that their situations are not unique and there is strength in numbers.

We need to help parents learn that they have the ability to advocate and change the environment for their kids with special needs. And parents need to partner with their kids as they grow up to produce better outcomes that are desired by the kids themselves—instead of what we think is important for the kids.

BLOOM: What advice would you give yourself now, if you were just starting out?

Evdokia Anagnostou: I would give myself a couple of pieces of advice. One would be that although it’s very important that we understand where the dysfunction and distress comes from, a strengths-based approach is something you need to be engaged in from the beginning of your research. Otherwise, you learn the hard way that if you only see the negatives in the difference you don’t appreciate the strengths and the value that people see in their difference and therefore your approach for intervention is limited.

The other piece would be to be prepared for the long haul—meaning that it takes a long time to actually see concrete results. If you’re going to be a clinician scientist in this field you need to be able to delay gratification. It’s extremely rewarding and you will make differences in kids’ lives, even if particular days look more distressing. And families and kids are your partners in this journey.

BLOOM: What have you learned from the families you work with?

Evdokia Anagnostou: I’ve been in awe of their resilience. I have learned to take a strengths-based approach and to actually look at the things the families and kids do well and work on those.

Initially, when you’re a young investigator, you see the distress and you just want to fix it. It’s a more naïve approach, to see all the things people are failing at and to work on those. I haven’t changed in the sense that I still believe you have to go after the things that produce distress, but that’s not the only way to improve quality of life, and, in fact, it’s a very narrow way.

If you only work on the things people are weak at, they never become great at them. But if you work on things kids are good at so that they develop a skill set where in some areas they struggle and in some areas they thrive, that produces a balance. The areas where the kids are thriving are more important for their quality of life. If you focus on problems, you miss the opportunity to get kids to thrive.

BLOOM: If you could change one thing about your job, what would it be?

Evdokia Anagnostou: More than 24 hours in a day.

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Changing the stories we tell about disability and families

By Louise Kinross

Recently BLOOM reported on research about the role of hope and the invisibility of dads in children’s rehab. This was produced by Parenting Matters, a team funded by the Canadian Institutes of Health Research to study what it means to parent kids with disabilities like Down syndrome, autism or cerebral palsy. Scientist Lucy Lach, an associate professor in the School of Social Work at McGill University, is the co-principal investigator of Parenting Matters. She also has a unique connection to families at Holland Bloorview and has raised two children with significant learning disabilities. She’s working with Dr. Peter Rosenbaum from McMaster University and Dafna Kohen from Statistics Canada. BLOOM interviewed her about her work.

BLOOM: In 1980 you worked as a summer student at what was then the Ontario Crippled Children’s Centre. Was that your first exposure to disability?

Lucy Lach: Yes, I worked in accounts payable and purchasing. I had had one singular experience with a student in a wheelchair at my high school, but during that summer I got to see and know kids with a variety of disabilities who were receiving services there. I was 20 years of age and was completely taken with the culture of the institution. I don’t think I realized it at the time, but in retrospect it is here that I learned how special the culture of pediatric centres is.

BLOOM: What was that like?

Lucy Lach: I became caught up in the culture of what is now Holland Bloorview—in how positive it was and how the kids were treated by staff and how special the staff were. It was a wonderful place to be as an emerging adult. During that period I began doing some volunteer work at the Bloorview Children’s Hospital at Leslie and Sheppard.

BLOOM: What did you do?

Lucy Lach: I just hung out. I was there to be a peer. I played with the younger kids and took the older ones outside to engage with the environment. This allowed me to begin to get to know these young people whose ways of communicating and thinking were different from what I had experienced. Although these lives were viewed as tragic and unfortunate, I learned that there was a different story to be told. These children had a liveliness and a beauty that I had not been exposed to or fully appreciated before.

BLOOM: As a social worker at SickKids, you later ran support groups for parents of children with intractable epilepsy at Bloorview. What did you learn from that?

Lucy Lach: How our systems are failing them. I learned about what the kids’ and parents’ struggles were in day-to-day life: trying to balance work and appointments and ensuring their kids were safe, and managing these very unpredictable seizures, sometimes at night or at school.

I learned how the complexity of what they went through on a daily basis was missing in the literature and in the snapshot of time we had with them in the clinic. When they came to see the neurologist they would have 15 minutes at most.

The support groups helped me to get at that deep experience and to ask questions of them when they were in clinic in a different way—to elicit stories not just of despair or challenges, but also of how well they were managing. And it made me feel humble as a practitioner to realize that I didn’t always know how I could be helpful to people who were referred to me. I learned to feel okay approaching parents by saying: ‘I don’t know how I can be helpful, but help me understand what concerns you the most, and what you would most like to talk to me about.’

BLOOM: Working with this population must have been difficult. 

Lucy Lach: It’s so very hard for them, that’s absolutely true. But you know what? I also heard over and over again how they figured that out, how they managed it. So the story about grief and sorrow was also a story about amazing accomplishments, abilities and triumphs. In fact, I’m more prone to tell you about the latter. These are parents who didn’t allow the unpredictability of these events to rule their family life. They incorporated them somehow.

One of the most important things was to engage a community of peers. In the best-case scenario, when a child had uncontrollable seizures, one of the factors that allowed parents to say ‘Okay, you can do this’ was if their child had friends who knew what to do in the event of a seizure to ensure they were safe.

Safety was a primary concern. Sometimes professionals involved would make judgmental comments about how overprotective and indulgent the parents were. That drove me nuts.

Often school was a huge issue. Parents were told the student could come back when their seizures were under control, but the seizures would never be under control. So a significant part of my role was advocacy to help school understand that sometimes you just had to manage the seizures and the behaviour as opposed to eliminating them.

BLOOM: What were the rewards of this work?

Lucy Lach: The rewards were daily because I was there so long that I got to see kids grow and to see parents grow to become amazing and effective advocates.

BLOOM: Why did you decide to move into the research world?

Lucy Lach: At the time I was working in the epilepsy clinic, the research was filled with assumptions about families’ experiences of their child. It was mostly very negative, as it continues to be today. If you skew research questions so that they enquire exclusively about negative experiences, you will inevitably obtain answers that contribute to a story about trauma, negativity, pathology and distress. But if you ask parents if having a child with a disability was, in any way, growth-enhancing, some will tell you you’re ‘off your rocker’ while others will thank you for the question.

What I’m trying to say is that research contributes to a story about families and this story is a social construction of some reality that ends up being what people believe as being ‘true’ about themselves. If you document the complexity of the story, or a different dimension, the plot thickens.

BLOOM: When you first got involved in research it was about outcomes for kids following epilepsy surgery, right?

Lucy Lach: Yes. Although the neurosurgeons and neurologists were extremely hopeful about the promise of this surgery, our clinical experience was slightly different. The procedure was successful in improving seizure control, but families didn’t see the changes in quality of life they had been led to expect: they didn’t see changes in their child’s cognitive skills or behaviour. So my colleagues and I designed a rigorous study to generate findings about outcomes we could be more confident in.

This meant we could share fully with parents, before they consented to surgery, that this procedure will not significantly alter your child’s cognitive skills and behaviour one to two years out. We were happy to be able to be as truthful and honest as we could during the consent procedure and that consent now involved full disclosure.

BLOOM: That must have been incredibly disappointing for families.

Lucy Lach: Absolutely. Parents would come back after the surgery and say ‘now can you do some surgery on my child’s behaviour? Can you fix that?’ There, the idea of ‘managing’ as opposed to ‘fixing’ was really important. Maybe we can’t fix it, but we can help by better articulating and adjusting your expectations so that you can better manage your reactions.

BLOOM: Why is the Parenting Matters research needed?

Lucy Lach: The question that drove that whole enterprise for me was another taken-for-granted assumption in clinical practice about overprotective parenting and whether it was damaging for kids with neuro-disabilities. There were, and are, assumptions about how terrible it is that parents don’t allow their child with disabilities to do certain things, and if only they would stop hovering, then their child would be okay. My hunch was that this was a complete oversimplification of the complexity that families faced.

So Parenting Matters has generated quantitative and qualitative data that has begun to make the narrative about these children and families more complex and stir up a bit of controversy about previous assumptions.

BLOOM: What are the main Parenting Matters projects?

Lucy Lach: One is a systematic review of the literature on parenting of children with neuro-disabilities. A second is analysis of a large Canadian population-based dataset on parenting and rates of separation and divorce among parents of children with these disabilities.

The third is an environmental scan of policies and programs for families, where we provide links to information on services, respite care and tax forms by province.

The fourth project is a clinical study of 263 Canadian children with various disabilities. The data was collected at Holland Bloorview, as well as in Montreal, Calgary and Edmonton. Parents completed measures about the complexity of their child’s disability, their behaviour, quality of life, family environment, co-parenting relationship and marital system, and adequacy of social support. That’s where we also looked at overprotective parenting and quality of life.

BLOOM: Do you have results from the large dataset?

Lucy Lach: Yes. We learned that parents who have a child with a neuro-disability don’t differ from parents who have a child without a neurodisability (or problematic behaviour) in how positive and consistent their interactions are with their child. The downside is that they experience themselves as more ineffective as a parent.

BLOOM: Why do parents of kids with neuro-disabilities view themselves as less effective?

Lucy Lach: That's a really great question. That measure, of effectiveness, also taps into how negative parents feel about their parenting relationship so I think it has to do with expectations they have of themselves and of their child.

BLOOM: Do you mean that parents of kids with disabilities may be great parents, but they may have unrealistic expectations about their child that make them feel inadequate? Or, do you think that in general our culture’s tendency to value achieving certain milestones influences how parents feel when their child doesn’t?

Lucy Lach: All of the above. It’s a classic psychological explanation versus a sociological explanation and both can be valid. There are things you internalize from society about what a parent should be and look like and do, and how a child should respond. Then there’s the actual transaction that happens on the ground. It’s not either/or—one informs the other.

BLOOM: I think we can do a whole story on that! When will you have results from the clinical study?

Lucy Lach: We have two doctoral dissertations. One tests the role that adequacy of social support for the child and family plays in a child’s quality of life. The other examines the role that parenting attributions and behaviours play in families’ experiencing their child’s disability as having a positive or negative impact. We found in the first that when a parent feels like their child’s and family’s support needs are more adequately met, their child’s life quality is higher, even in the face of high levels of neurological complexity.  Next on my agenda is to examine the role that ‘overprotective’ parenting plays in child outcomes.

BLOOM: You have teenage twins with significant learning disabilities. Did your earlier work in the field of disability help you navigate some of the issues your own children faced?

Lucy Lach: Well, it was certainly hard to be on the receiving end of schools that were being judgmental and difficult with my kids and particularly with my son. Sometimes educators had already made assumptions about my son—they’d diagnosed him before anyone had actually administered a test. But absolutely, my research informs my parenting and my parenting informs my research.

BLOOM: What have you learned from raising your kids with learning disabilities?

Lucy Lach: That they’re not like me—they have other strengths that I don’t have. They are both socially gifted and can talk to anyone. As a child I loved to read and learn and study and my children are not like that. They are happiest when they are interacting socially. I get that, but as a mother it has been a bit of a struggle to not apply my standard to them.

BLOOM: I feel that we still devalue people who think differently—particularly in academic settings. Scientist Barbara Gibson here talks about the moral hierarchies of movement, and how we influence children’s development because walking is seen as the only acceptable way to get around. But I think we have moral hierarchies about intelligence. We make it so obvious that we value academic intelligence, yet we have many clients who have learning and intellectual disabilities. How do we convey the value of different ways of thinking? Could there even be advantages to different ways of thinking?

Lucy Lach: We definitely need to valorize different ways of knowing. There’s an emerging literature on different types of intelligence that is slowly making its way into the mainstream.

BLOOM: Have your thoughts on intelligence changed over the years?

Lucy Lach: Absolutely! I had no choice because my default position is to recognize strengths and abilities as opposed to inabilities. That’s how I operate. When I describe my kids as socially sophisticated I mean they have amazing social skills and intelligence and if they can capitalize on that in some way, in a pro-social way, then they’re going to be okay. Yet my kids have had no exposure to help them recognize the importance of their social intelligence. In fact, if anything, at times it has been devalued and mistrusted. What about work in the trades? What about sales? What about services? They’ve had no exposure to that. It’s really frustrating because choice matters.

BLOOM: I find it interesting that there are a number of studies about self-reported quality of life in people with Down syndrome, and typically the participants rate their lives very highly. But when you mention this to people who study quality of life, they discount the studies.

Lucy Lach: I find that fascinating. Some of the quality of life research I’ve been involved in subsequent to epilepsy surgery has looked at child and parent ratings of the child’s quality of life and the child inevitably rates their quality of life higher. Quality of life literature is a ‘dog’s breakfast’ quite frankly. So when you say ‘quality of life’ and another person says it, you may both be drawing on completely different assumptions and dimensions.

BLOOM: Knowing that parents of kids with disabilities are at greater risk of mental health problems, is there anything specific you do to take care of yourself or build your resilience?

Lucy Lach: Ha! For years I just ignored it. Now I recognize that between working long hours and my kids and husband and hitting age 56 this year, your health can go a bit sideways. I’m paying more attention to how much I’m walking, what I eat, and whether I go for regular checkups. And I do take vitamin supplements.

BLOOM: If you could change one thing in our health or social supports for families of kids with disabilities, what would it be?

Lucy Lach: We have navigation services spread across different sectors and institutions. Yet families experience feeling lost and uncertain. They don’t know what to access, where to access it, and how. We need to focus our efforts across diagnostic silos to make sure that every parent knows what they and their child are eligible for and to give them the tools to make informed choices.

We also need to be doing more to create opportunities for parents to support parents. There are things parents can say to one another that a professional could never say to them. There’s a street ‘cred’ there. In my next phase of research I’ll be designing peer support groups online—for parents across disabilities, not just within a disability group, who have children at similar developmental stages. I’m currently running focus groups to figure out what they need, how they would like it delivered, and by whom. No sense in doing anything without first hearing from parents.

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How to run parent-to-parent support

By Louise Kinross

Parenting a child with a complex, life-threatening medical condition and disabilities is stressful and isolating.

Some of the best support comes from other parents—whether it’s families sharing practical or emotional support on a hospital unit or a formal program that brings parents together.

Holland Bloorview’s Peer Support Best Practice Toolkit combines firsthand parent stories, peer-support models, case studies of Ontario programs, FAQs (and answers!) and a review of the research for parents and professionals wanting to start a group.

“Through case studies and talking to families we shed light on the very unique experience of families with very complex children,” says Julia Schippke, a knowledge broker on the Evidence To Care team at Holland Bloorview.

The toolkit was funded by the Ontario Ministry of Health and Long-Term Care. You can download it at the link. Section one of four gives a good overview of the project.

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