Disabled teens crave risk, speed, freedom: Study

By Louise Kinross

Many teens love to defy authority, speed and do other dangerous things.

A new Holland Bloorview study finds that youth with the most complex disabilities are no different.

The study—published in the Sociology of Health & Illness this month—found that youth with multiple disabilities want to experience freedom, speed, risk and time alone.

For example, one young man said the safety belt on his wheelchair didn’t fit with his spontaneous personality. “My whole life, I’ve been wearing this thing,” he told researchers. “I’m the kind of person that would take risks. I don’t want to just live my life as a boring person—seeing everyone do awesome stuff and me doing nothing.” His idea of fun was being pulled in the trailer of an ATV “because they were letting me go free.”

These activities are “not necessarily what we would prioritize in rehabilitation,” says lead scientist Barbara Gibson, who is a physiotherapist.

The study looked at how settings shape what we do—with the understanding that spaces aren’t static, empty containers, but fluid arrangements of people, furniture, technologies and social expectations that can enable or restrict what happens in them.

Participants included two groups rarely studied: those who require 24-7 medical care and may use ventilators and those who have little to no speech.

Youth were observed doing two activities they chose in the home or community. During the first activity they were taught to use a camera to photograph their experiences. In the second activity, a research assistant observed and discussed the activity with them as it was videotaped it. Participants also participated in face-to-face and electronic interviews. Nineteen young people aged 14 to 23 took part.

All participants said doing practical or fun things outside their home was much more challenging than inside—because people outside the family didn’t know how to help with medical or personal needs or weren’t willing to slow down to communicate with them. Activities at home were easier and more enjoyable because of connections with family members who got into a rhythm of facilitating them.

The wheelchair was seen as something freeing—for example, allowing a participant to go to the park alone—but also constricting, because of how the safety strap suggested the user was at risk or somehow lacking.

Because many activities for the youth relied on constant support from a parent, breaks from this connection—for example, when a personal support worker, friend or family member came by to visit or go out with the participant—was interpreted as freeing.

Rather than valuing independence over interdependence, the researchers suggest rehab clinicians look at how human connections in specific spaces enable positive activities and experiences. “…At times facilitating a dependency may be a more fruitful rehab goal than enabling independence,” they write.

For example, they note that while using a voice device will give a young person a higher rehab score in “independent communication,” many participants communicate much more efficiently and less laboriously through a parent or family member.

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'A Matter of Dignity' wins 2016 disability reporting award

A Minneapolis Star Tribune investigation into how hundreds of adults with developmental disabilities are segregated and neglected in a Minnesota system of sheltered workshops has won first prize in the 2016 Katherine Schneider Journalism Award for Excellence on Reporting on Disability.

A Matter of Dignity tells the story of adults who spend their days collecting trash for $2 an hour and who have been sent against their will to live in remote, dangerous group homes that are described as prison-like.

Reporter Chris Serres accepted the award of $5,000 at the Cronkite School last night.

One of the judges, Jennifer Longdon, said the series was chosen for "its exhaustive chronicling of the experience of adults with disabilities in Minnesota, from the indignities of sheltered workshops to the hopeless years-long wait for vital services that never arrive. These memorable stories were masterfully told while preserving the dignity of the individuals profiled."

The Schneider Award is the only journalism awards competition devoted exclusively to disability reporting. It's administered at the National Center on Disability and Journalism at Arizona State University's Walter Cronkite School of Journalism and Mass Communication.

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A big idea: Mobility for all

By Louise Kinross

It’s a tough business problem: how do you commercialize a medical product for a niche market that can’t afford it?

For 10 years, Holland Bloorview scientist Jan Andrysek envisioned millions of amputees in the poorest parts of the world regaining their mobility and livelihood with the all-terrain prosthetic knee he invented and developed.

But it wasn’t until American social entrepreneur David Green got involved in 2013 that he found a way forward.

This year Jan and David—along with Emily Lutyens and Brandon Burke—founded LegWorks, a socially-minded business that aims to make high quality prostheses available to amputees worldwide regardless of their ability to pay.

The all-terrain knee is its first product. The knee is sold at market rates in 10 high-income countries so that it can be sold at, or near, cost to non-government organizations, hospitals and rehab clinics in 10 low-income countries. They then provide it at low or no cost to consumers.

“We’ve developed a product for people in the developing world that is also innovative and useful in developed countries,” Jan explains.

The all-terrain knee uses a proprietary locking mechanism that locks the knee when the user extends his leg, preventing falls that occur with traditional knees that require people to place weight on the foot before stabilizing. “Amputees are prone to falling,” says Jan. This is because traditional knee joints lock when the user puts weight on them. “But if they don’t place weight correctly, which happens, the joint may not lock, causing the user to stumble or fall.”

The all-terrain knee is a rugged, high-performance waterproof knee.

About three million people worldwide have above-knee amputations. Most live in the developing world, where less than 15 per cent have a prosthetic. “That means they can’t function,” Jan says. “Most jobs there require manual labour, so they’re unable to work and support themselves or their families.”

Jan published a study this summer of 10 young adults in Chile who wore the all-terrain knee for two years and compared it to their old prosthesis.

Based on walking tests, heart-rate monitoring and questionnaires, Jan’s knee showed a number of advantages. Study participants found the knee improved their stability while standing and walking and made it easier to get around: when wearing the new knee, they expended 40 per cent less energy than they did with the traditional prosthesis. The new knee also supported natural movement in the pelvis, whereas the weight-activated knee caused a pelvic tilt that could create long-term musculoskeletal problems, Jan says.

Nine out of 10 study participants chose to continue using the all-terrain knee following the study.

“In places such as Cambodia, we aim to provide the knee at, or near, cost to non-government organizations who will provide it to low-income individuals,” Jan says. “In developed countries, we provide the knee at prices that coincide with local reimbursement systems.”

The all-terrain knee is sold in Zambia, Colombia, Haiti, Guatemala, Turkey, India and Cambodia. It’s also available in North America, Australia, Europe and Russia. Almost 500 knees have been sold.

Jan notes that while bionic devices based on microprocessors cost over $150,000 in the Western world, most amputees in poor regions can’t afford “the most basic device that doesn’t work well. There is such an inequality.”

Jan says NGOs love the knee because “the technology works well and patients want to keep using it.” One of the challenges in getting the knee to people in the developing world is a lack of prosthetists who are trained to fit them.

Three years ago LegWorks “lucked out with seed funding of $100,000 from Grand Challenges Canada,” Jan says. “To get the funding we had to present how we would translate the technology. Grand Challenges put me in contact with the social entrepreneur David Green.”

Jan learned about David’s model of compassionate capitalism. David helped create a company in India that manufactures artificial lenses used in cataract surgery at a selling price of $4 a pair as opposed to $150 in the U.S. This enables a local hospital to perform over 300,000 free or low-cost cataract surgeries each year.

Jan says he’s excited about advancing science to meet the needs of amputees. “In developing countries people with disabilities are looked down on and excluded,” Jan says. “This leads to even greater poverty. Providing them with a well-working leg gives them the opportunity to regain their lives.”

Photo above by Patrick Brown © 2014 Panos

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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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Some thoughts on acceptance

By Louise Kinross

One of our staff is doing a workshop for parents on acceptance. She asked me for resources and I recommended these BLOOM pieces below. But first, a story from Adrian Anantawan, an internationally recognized violinist and former client at Holland Bloorview. 

In university, Adrian chose to stop wearing the prosthesis he'd worn all his life (he was born missing one hand). He said the prosthesis was hot and heavy and didn't make it easier for him to do things. "The function was more of an image issue than anything else, and it lost its function as I became more accepting of my own body, and how I looked to everyone else," he told me.

1. 'Normal:' It's not all it's cracked up to be An interview with Dr. BJ Miller, a palliative care doctor who became a triple amputee after an accident when he was a student at Princeton. 

"I wouldn't try to convince parents not to worry, or not to wish that their child had an easier go of things, but I would say over time spend your energy on finding things to celebrate in your child's differences. Turn your attention towards the differences, instead of away from them, and who knows what will come, either lessons or some weird new talent. Divorce yourself from the typical measures of success in life. It's a harder road, but a way more fulfilling one.

"I have a window into the inverse of this in my work. I see people all the time who do have a ridiculous wealth of conventional success and there's a lot of misery in there because they've never embraced their own internal metric, they've never done their own homework. Part of getting there involves letting go of the idea that 'if I just had this or that' or 'if I just looked like this or that' things would be perfect. In fact, it's my experience that it's the opposite."

2. Jean Vanier on accepting who we are An interview with philosopher and humanist Jean Vanier, founder of L'Arche.

"The danger in our society is to pretend that we're strong and powerful. We can do things, but we are all human beings. We were born in weakness and we will die in weakness. We were born to grow strong but also to grow weak. Discovering our weaknesses is about discovering who we are. The fundamental thing for human beings is to accept ourselves as we are, with our strengths and also with our weaknesses. And weakness is not something bad. It implies: 'I need your help.' That brings us together, because I'm not able to do everything myself. I'm calling out: 'Can you help me?' Fundamentally, we human beings, what we need most deeply is to know that we are loved and accepted."

3. Worried your not a good-enough parent? Barb can help Interview with Barbara Fishbein, a social worker at Holland Bloorview for over 30 years.

"We’re having a lot of conversations with parents about the importance of play and leading a normal life. I think parents need to be cognizant of over-programming, over-medicalizing and over-therapizing. They need to look at the amount of time their child is spending in therapy. If your child was a typical child, would you want them spending that much time in a rehab centre or hospital? 

"Can you let go of some of that pressure on your child and yourself and be able to be with your child and appreciate them for who they are? 

"I also strongly belief in the emotional life of a child and when we focus so much on physical rehab, which of course is important, we may forget to pay attention to the child’s emotional wellbeing—including how to nurture a feeling of acceptance and belonging."

4. One humanity, one voice A story about a talk by Far From The Tree author Andrew Solomon at the Toronto Reference Library. 

Solomon [refers] to the way minority groups have historically split off from each other in their advocacy efforts. People with physical disabilities don't want to be identified with those with intellectual disabilities, or people with mental illness object to being compared to those with autism, or someone who's transgender doesn't see any common experience with a person with dwarfism. As he notes in his book, the parents of child prodigies didn't want to be included in a book with families of severely-disabled children, people with autism insisted that those with Down syndrome had lower intelligence than them, and deaf people didn't want to be associated with people with schizophrenia.

I think Solomon has nailed the problem of discrimination within the disability community—and how it fractures all of our attempts to achieve equality as humans. 

"Being blind and being gay are different, but having a selfhood that others perceive as undesirable is identical," Solomon writes in Far From The Tree.

5. There's a lot being written about self-compassion now, which is linked to acceptance. There's a Centre for Compassion and Altruism Research at Stanford Medical School. This past weekend CBC's Tapestry program interviewed Thupton Jinpa, a Tibetan Buddhist monk who developed a course in Compassion Cultivation Training at Stanford. He's also published a book called A Fearless Heart: How The Courage To Be Compassionate Can Transform Our Lives.

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France upholds ban on Down syndrome ad: Children too 'happy'

By Louise Kinross

In an extraordinary decision, the Council of State in France has upheld the decision of the country's TV regulator to prevent this video, whose message is that children with Down syndrome can be happy, from being seen on French TV.

The ad, launched by Italy's CoorDown and Satchi & Satchi for World Down Syndrome Day in 2014, has been viewed on Youtube over 7 million times. It won six awards at the 2014 Cannes Lions International Festival of Creativity.

The idea for the ad came when CoorDown received an e-mail from an expectant mother whose child had been diagnosed with Down syndrome: "I'm scared," she wrote. "What kind of life will my child have?"

The ad, called Dear Future Mom, is a response from a number of children and teens with Down syndrome. "Your child can be happy" is the message. "He'll be able to hug you" says one young man. "He'll be able to go to school" says another young woman, "and work and earn his money" say two girls.

In June of 2014, the French TV regulator said it was "likely to be controversial" and was not "a message of general interest." Earlier that year several French channels had aired an excerpt free of charge at the request of Down syndrome associations.

According to Fondation Jérôme Lejeune, a French Down syndrome research and advocacy group, the original decision to censor the ad came after complaints from two women who had terminated pregnancies due to a prenatal diagnosis of Down syndrome. They issued a news release last week suggesting the Council of State wanted to hide pictures of children with Down syndrome who look happy.

The TV regulator considered the ad's message likely to "disturb the consciences of women who, in accordance with the law," had chosen to have abortions, this article in Le Monde reports.

Jérôme Lejeune had asked the Council of State to intervene on the regulator's ban. It says it will bring the matter to the European Court of Human Rights and argue that people with Down syndrome have a right to express their happiness without censorship.

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Hardships, silver linings and me: A diary of rehab

By Alivia Osland

I’ve been in the hospital for almost three months because I’ve been diagnosed with Guillain Barré Syndrome.

The lower half of my body was paralyzed (my whole body could have been paralyzed, so I’m considered lucky). I had problems with my breathing and swallowing and what wasn’t paralyzed was numb and tingly and extremely weak. I also had an ongoing headache for the first month.

At the beginning of this journey I was miserable and hurting—mentally and physically—and dazed by just how surreal this really was. 

After a few weeks of a little progress, things went downhill. My breathing was affected. At that point I was throwing up quite frequently and they thought I was aspirating some of the vomit. Then my oxygen levels went down to 30 per cent (they’re supposed to always be above 90 per cent) and the doctors thought it would be best if I went to the pediatric intensive care unit.

Once I got into the PICU everything was a blur. Shelly—my nurse—said she was giving me a nasal feeding tube right away. That crushed me. For a couple of weeks, doctors had said it was a possibility, but I never thought it would actually happen. So the feeding tube went in and the oxygen prongs were next. Other than the feeding tube, the oxygen prongs were the hardest to get used to. I didn’t think they were helping me. It felt like it was harder to breathe than before. I despised them.

The first three or four days in the PICU were the worst. I was throwing up what felt like every five seconds and it took hours to get my breath back. My throat felt incredibly raw because of the constant throwing up, the feeding tube and the continuous high-flowing oxygen going through it.

That was when I wanted to go home the most. I was getting an artery line, I couldn’t eat or drink on my own, I couldn’t breathe on my own, I couldn’t go to the bathroom on my own (I HATED the bedpan) and I couldn’t move my legs at all.

It was nuts that I was actually immobile and couldn’t do anything. I didn’t know if it was going to get worse than it already was. Would I need a catheter? A respirator? Would it get that bad?

Initially I would wake up and forget about everything, for a minute. Then when I remembered, my mood just fell and it was awful. Eventually I got used to it and didn’t forget anymore.

It felt like it would never get better, but it did. They took the artery line out and I was in a bicycle study. What is a bicycle study, you might ask? It’s a study where they bring a specialized bike to the end of your bed and they strap your legs in, extremely safely. Then the bike would start moving on its own with the choice of higher speed or higher resistance (if you were peddling).

The idea behind the study was that if you got some exercise while you were sick, you could recover and get stronger faster. I think it worked.

I was only in the PICU for 10 days and then I was back on the unit. I left the oxygen prongs behind and felt a lot better.

Soon after I got comfortable in my new room, my occupational therapist Kate came into my room to do some feeding tests. Purees went well but liquids not so much. I coughed quite a bit on the milk and I was really disappointed. I had my appetite and thirst back, but was still unable to please my cravings.

Next I went to the therapy room to try standing, after countless sessions of sitting at the side of the bed. I was (figuratively) jumping for joy! I got wheeled up to the parallel bars and had Jill (physiotherapist) on my right, Kate on my left and Barb (physiotherapist) in front of me. We were going for it! With both my hands on the armrests of my wheelchair I pushed myself up. I was standing for the first time in weeks! I was extremely proud of myself.

We did that for the next few days and it was getting a lot easier. I wanted to try walking. Jill and Barb thought it was a good idea so we gave it a shot. I stood up, steadied myself and then took a step and then another and then another. I was walking! Holy moly, I was actually walking. I sat back down filled with optimism for the next few weeks.

As time progressed, so did I. Now I could walk from one side of the room to the other and I could also do a transfer from my wheelchair to my bed with a walker. No one could believe the progress I was making (not even me). Things were looking up! I thought I must be going home soon. But I thought wrong.

One morning Jill came into my room for physiotherapy and I asked her what I would have to do in order to go home. That’s when she brought up Holland Bloorview in Toronto. I was confused. I thought I’ve come a long way, why would I have to go to another hospital? She went on about how at Bloorview they’re more focused on rehab than acute care. I was understanding more now, but how much longer would I be hospitalized?

Jill told me it could vary between three weeks and two months. Seriously? Another two months? I held in my tears as best as I could. Then my dad came in with my speech language pathologist Sara and Jill filled them in on our conversation. They all looked at me with pitiful looks and I couldn’t hold it in anymore. The tears streamed down my face. I couldn’t control them. I just wanted to go home. I couldn’t handle another two months. But soon enough it was moving day.

On August 23, an ambulance took me to Holland Bloorview. I have to admit, it was pretty cool riding in an ambulance. It didn’t take long and soon we were there. Holland Bloorview was very different from McMaster Children's Hospital, like wow!

At Bloorview you have a schedule for the week. There’s a Bloorview school, a lounge where everyone eats, and you can go home for weekends. There are family team meetings where you, your family, your social worker and your team of therapists all have a meeting and discuss your goals and progress. During your first team meeting (seven to 10 days after your arrival) they will give you an estimated discharge date.

My first day was busy, busy, busy. I met loads of new people. It was a little overwhelming, to be frank. I met all my therapists, my social worker and my head nurse. I was exhausted and in desperate need of a nap by the end of it.

During the next few weeks, I was progressing like crazy. I came to Bloorview being able to stand on my own for 20 seconds, tops, and now I was using a walker to get around. This was so exciting!

My physiotherapist Alanna was working me really hard! Which was great! Soon she was leaving to get married so I was getting a new physiotherapist for the time being. I wanted to surprise Alanna when she came back, maybe even being able to walk without any equipment? Hopefully.

When school started I was alone most of the time because my parents had commitments they needed to fulfill. The nurses kept bugging me about eating in the lounge or going to recreational therapy. I really didn’t want to. Socializing wasn’t my strong suit and I was incredibly shy. They repeatedly said that socializing is therapy too, but I was socializing with the nurses and my family. So eventually they got off my back.

Speaking of school, I’m in a Grade 6 to 8 class and my teacher’s name is Anne-Marie and the educational assistant is Judy. 

When I first started, I hated it, to be completely honest.

My first thought was: “How could school get any worse? Have it in a hospital!” I wanted to go to MY school, where all my friends were. But I sucked it up and it wasn’t all that bad. Anne-Marie and Judy were awesome and I pretty much did my own thing most of the time. It was going pretty well!

With my new physiotherapist Andrea we were doing all sorts of crazy things like jumping, running and walking along a balance beam while squatting and reaching. It was nuts! I really enjoyed it and I was getting pretty good at it too!

We also went on daily walks with activator poles. Walking with the poles was getting a lot easier, so Andrea did the six-minute walk test on me. The test determines whether you need a walker anymore by testing if you can walk 500 metres in six minutes. I went 523 metres!

The next day I was independently walking around the hospital. I could LITERALLY jump for joy now and you bet I did!

Alanna was back and boy was she happy! I gave her an update on everything I could do. I could stand on one leg for a minute, I could jump, I could run and so much more! She was blown away! That day I climbed four flights of stairs, jumped rope, and did 'suicides' and basketball drills all while running! I was having a great day! I could run, I was feeling optimistic about discharge and they were weaning me off my pain medication. I was starting to see the light at the end of the tunnel.

Today was the day of my family team meeting and I was really hoping I'd be able to go home sooner than anticipated. I crossed my fingers. Once we were all in the meeting room (Alanna, Sarah—occupational therapist, Patrick—my social worker, Katherine—my child life specialist, Anne-Marie and my family), Patrick told us that my school was on the telephone line and so was the outpatient therapy clinic I would be attending at Kids Ability.

The meeting started off with how I’m doing medically (which was fantastic), then we began to discuss my physical capability. Alanna said I was doing awesome and that there were still some minor things to work on but overall I was doing great. Next, Sarah said that my strength is definitely coming back and that I won’t need any outpatient occupational therapy (yay!).

Then we got onto the topic of how I was coping with my hospitalization. Everyone said I was coping fantastically. I tried really hard to focus on the positives, so I’m glad it was noticed.

Soon after, my vice principal mentioned some strings they could pull to make the transition back to school easier for me. Things like having a buddy walk with me to class and carry my books, leaving class early so the hallway isn’t so busy, having a chromebook if writing was too tiring and being able to have a rest if needed.

I didn’t think all that was really necessary, and neither did Alanna or Sarah. So we ended up just going with the buddy, as a precaution. Finally, we came to the discharge aspect of the meeting. Drumroll please… I’m going home a week early!

Out of nowhere the waterworks came gushing out. They were out of control. It just dawned on me that I was going home NEXT week.

That’s so soon. I just started connecting with some of the people here, like my roommate and other clients. I just got comfortable with eating at the lounge, going to recreational therapy and socializing. But now I’m leaving.

Two days before my discharge date I realized that I didn’t really want to leave. I was used to everything here at Bloorview and I didn’t want to have to deal with such a drastic change all over again. Plus, I made friends that I may never see again and it’s hard to be okay with that. I’m hoping we stay connected even though we’re so far away.

But I need to remember that leaving is good. It means I got through the most difficult thing I’ve ever had to deal with and I’m proud of myself. I also can’t forget about my friends back home, I honestly cannot wait to see them.

This journey sure has been difficult, but there are positives. I’ve made friends I would have never gotten the chance to meet otherwise and I’m coming out of it with a whole new perspective on life. I’m so much more thankful for the little things now. 

To other kids going through something similar, I would say keep your head up and focus on the positives! That’s what saved me from falling into a pit of sadness. Sure, I was sad, but it could have been worse. It may seem like it doesn’t ever get better, but it does. It always does. It can really suck, but when you’re better you feel like SUPERWOMAN. Just about walking or running semi-fast or maybe even pushing yourself in the wheelchair. Try not to let it get you completely down because there really are some positives about the whole situation. I made friends that I still talk to everyday and the nurses can be GREAT. They’re just great people. So find the positives in a really big negative. 

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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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'He's taught me to think differently:' Siblings video

My friend Kristen Huys has produced a candid, tender, illuminating video in which children talk about their brother or sister with a disability. Siblings was produced in support of Beverley School in Toronto. It includes kids of different ages and with different kinds of disabilities. Take a peek and share.

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