'Trust your instincts. That's what I tell parents'

By Louise Kinross

Fahima Afroze is a biomedical engineer with three daughters. Myreen, 11, has autism and Zafreen, 8, has cerebral palsy.

When Farzeen, now 4, was hospitalized at six months old, Fahima knew her way around the health system.

“They thought Farzeen had a bone infection, but she kept getting other infections,” Fahima recalls. “She caught hand, foot and mouth disease, and had yeast infections in her tongue. They brushed it off and said ‘she’s a kid,’ but my other kids weren’t that susceptible. I kept asking if we could call someone to look at her immune system, and they looked at me like I was the ‘crazy mom.’ One day a doctor left her medical record in the room by mistake, and I read it. I saw her neutrophils dipping to a dangerous level. Neutrophils are a component of the white blood cells. Without them, you have a suppressed immune system. When I showed the doctor, his eyes widened and he paged hematology and the cancer clinic. They gave us the diagnosis of Neutropenia, which is the body’s inability to make neutrophils. I knew something was wrong with her immune system! I had a maternal instinct about my child, and I was collaborating. But they were renowned specialists thinking ‘she can’t teach us our job.’ Trust your instincts. That's what I tell parents.”

With three daughters and three diagnoses, Fahima juggles over 300 medical appointments each year. “If they had the same thing, I could take them to the same appointments,” she says, but each child sees different specialists. Because she can never be certain about the length of visits, “I often have to drag the other two with us. Your sense of normalcy changes when you have a child with special needs. Our new normal is spending the whole day at hospital, or the whole day getting a leg casted.”

When she's not ferrying her children to doctors and therapists, Fahima is advocating for their inclusion.

One of her greatest frustrations is disability stigma. “It’s how people treat your special-needs child,” she says.

After her daughter Myreen spent a few years in a contained ‘community classroom,’ Fahima fought to have her educated in a regular class. “It’s the mindset at the school board that children who are differently abled don’t flourish in the regular class, and have to be segregated. They are very proud of their community classrooms.

“My whole philosophy is that there are no community classrooms in life. There is no community classroom in the workplace, in a place of worship or at an amusement park. We are expected to thrive in regular society. The school board is giving these students the mindset that they don’t deserve to be with socially ‘normal’ people. How do you impart social skills when you segregate students from society? Their peers are their best mentors.”

In the community class, Fahima says Myreen didn’t learn the regular curriculum. “They teach life skills, and it’s up to the teacher how she wants to teach life skills. My child was taught that the stop sign is an octagon for three years. Here’s a child who’s so bright, she knows all the polygons in the world.

“The community classrooms assume the students aren’t going anywhere. So while other students graduate with a diploma, they will graduate with a certificate. We’re closing doors on them before they’ve even tried life.”

All three girls are now in regular classrooms. “My kids have learned to manage in life,” Fahima says, yet they're socially isolated.

When Myreen joined a regular class, she “did well, getting lots of As and Bs. But she didn’t know how to handle the bullying,” Fahima says. “The other students put her up to do things, and she got in trouble. I proposed a buddy system, where an older student would support and mentor a younger student, and could be vigilant to prevent bullying. But the school didn’t do it. That would be going the extra mile.”

Fahima’s second daughter, Zafreen, is in Grade 3 on the ground floor of the same school. She wears leg and hand braces. Fahima is concerned about next year, when the Grade 4 classes move upstairs. She hopes the school will let Zafreen use the elevator. “Every time I ask for the littlest things, it’s like I asked for a kidney or money out of their own pockets, and the push back is crazy. I’m labeled as ‘that mom.’”

Fahima says it’s draining to advocate constantly. “How much can you preach and teach people along the way? I feel I’m doing this over and over again. Every year, I have to battle with a new set of teachers and reinvent the wheel.”

Because her children fall in a grey area, “they aren’t good enough for inclusion, but they’re too good for services,” she says.

Fahima pays for most of her girls’ therapy privately. “I have a new way of counting money,” she says. “I call it ‘therapy hours.’ If I see a $600 coat, I know that’s more than five hours of therapy, so I’m not buying that coat.”

Outside of school, her children tend to participate in adapted or special programs. “Even with camps, you have to choose the special-needs camps, because they will have the accommodations,” she says. “I can’t believe this is 2017 and I’m fighting for inclusion.”

Fahima recalls meeting a social worker who asked how she was coping with three children with chronic conditions. The social worker noted the increased risk of depression in parents who have only one child with disabilities. “I showed her my schedule of 300 plus appointments a year, and I told her I volunteer at places like Holland Bloorview. ‘I don’t have time to get depressed,’ I said.” Fahima laughs. “I guess I could pencil depression in on Tuesday, from 12 to 2.”

“I would be lying if I said it was easy. The hard work, the blood, the tears are too real. But, once you go past the grieving point, you have to hope for the better. You have to make the best of what’s handed to you.”

Volunteering keeps Fahima motivated and energized, she says. She co-founded the York Parent to Parent Support group, which helps parents advocate for their children at school and in the community. She also sits on Holland Bloorview’s Research Family Engagement Committee. “It’s a way for me to give back and a way for me to connect with people,” she says. “It’s not only my children whose social lives have suffered. When I’m volunteering, I don’t feel alone. I see other people in similar or even worse pain, and it’s a humbling experience. I get a reality check. I also like to share knowledge so that someone can learn from the lessons of my life. I hope that someone else may be able to bypass some of what I’ve experienced. And I feel supported when I hear other people’s stories. It’s not just me.”

Fahima recently spoke at a golf tournament by the Ontario Glass and Metal Association, which was dedicated to Holland Bloorview’s Family Support Fund. After talking about how her family has benefited from the fund, which supports equipment, recreation and respite, a participant offered to match the $3,000 that had already been raised. Most recently, she shared her story with Holland Bloorview research students.

Fahima became a family leader at Holland Bloorview even though her daughters are not clients. “We fall out of the catchment area because we live in Markham,” she says. “I’m allergic to the words ‘catchment area’ and ‘mandate.’ Every rejection letter I get has these words in it. We have nothing that compares to Holland Bloorview or SickKids where we are. Diseases don’t come by catchment area. It’s unbelievable that there would be such a difference in services just 40 miles from Toronto. I intend to speak to the CEO at Holland Bloorview about it, if I can.”

Fahima grew up in Iraq and Kuwait, and her family were refugees during the Gulf War. “When you’re a refugee, you’re not even treated as a human being,” she says. “You’re treated with no respect. You’re at the mercy of other people.” Eventually, the family was able to get a “flight from Jordan back home to Bangladesh.”

Fahima was studying engineering in Utah at the time of the 9/11 terrorist attacks. “I volunteered to speak about what it means to be Muslim, and that terrorism is not a religion,” she says. “No religion preaches to harm humanity. Instead, they preach unity, brotherhood and love for mankind. I wrote a paper called The Gulf War: Facts vs. Fiction and I got an A for it.”

Fahima came to Toronto 11 years ago. She is a Canadian citizen. Her oldest daughter Myreen hopes to be a surgeon and a pianist. She already has perfect pitch, her mom says. Zafreen wants to be a teacher. And Farzeen has her sights set on being a dancer. “We have the same dreams as any parent does,” Fahima says.

Like this story? Sign up to receive our monthly BLOOM e-letter in your inbox.

Read More

Parenting as a grandmother: 'You're so much wiser'

By Louise Kinross

At age 63, Marna-Rose Minett has raised two children.

Now she’s raising a third—her granddaughter Rayne, 7, who has cerebral palsy and lives with Marna-Rose and her husband Wayne.

Preparations are already underway for Halloween.

“Rayne loves dressing up in costumes,” says Marna-Rose, pulling up a picture on her phone of Rayne posing as “super girl.”

“This is a costume I originally made for my daughter,” she says, pointing to Rayne in a spotted leopard suit. “Rayne loves music and dancing. She has her own keyboard and two play guitars. She’s trying to talk me into riding lessons,” Marna-Rose says, looking at a photo of Rayne atop a pony. “She’s bright and sunny and personable. She charms a room. She’s really positive, and also very tenacious, when she wants to do something. She makes friends and she wants to be with people and do things.”

Marna-Rose became Rayne’s primary caregiver when Rayne was 18 months old. Rayne’s mother is very involved in her life, but needed to work on her addiction issues.

“You’re so much wiser,” Marna-Rose says, comparing parenting at this stage in her life to when her own children were young. “Things that would have made my husband and I crazy with our own kids are minor bumps in the road with Rayne. You have that perspective.”

While in some ways their parenting style is more laid back, Marna-Rose says they’ve been very hands-on with Rayne’s physiotherapy. “We realized how incredibly important that was for her over the long term, so we worked really hard on that. Maybe if we were younger we would have let that slack a bit.”

Rayne has stiff muscles, but “walks, runs, dances and skips,” Marna-Rose says. Her speech is delayed, and while her grandparents understand her at home, Rayne uses a communication device at school. She graduated last year from Grade 1 in the Bloorview School and is now in a contained Grade 2 class in a neighbourhood school. “We appreciate her milestones more,” Marna-Rose says. “I don’t know if it’s because she’s our granddaughter, or because of her disability.”

When Rayne was born, disability was not new to Marna-Rose. She had studied kinesiology and worked in group homes, including managing one for adults with cerebral palsy. She was also executive director of a program that offered respite to parents of children with severe disabilities.

“Oh good, I can handle this," Marna-Rose recalls thinking, when the doctor said Rayne had cerebral palsy. “That was my first thought.”

Marna-Rose says the biggest challenge of parenting as a grandparent is physical exhaustion. “I have a bad back, and I was already an older mom once, when I had my own kids. I really notice how I don’t have as much physical energy and strength. You get down on the floor, and it’s hard to get back up. If Rayne needed soothing I was sitting in a chair somewhere, I couldn’t carry her. It’s parenting with an aging body.” 

As a grandparent, Marna-Rose says she hasn't had to deal with any feelings of guilt about Rayne's disability. “I know that can get in the way for some parents.”

Advocacy comes more easily at this stage in her life, she says. “My son is gifted and I was used to advocating for him. Being a grandparent, I think I’m a little more reasoned with my advocacy. I’ve had experience dealing with the school system. I can step back a bit, and I have the words. I need more sleep, but I have better words!”

Marna-Rose and her husband investigated a support group for grandparents raising their grandchildren, but “decided we didn’t need it. Our support group of friends, even though we’re all older, is strong, our family was very supportive, and the Bloorview School was fabulous. Our daughter is still there 100 per cent for Rayne.”

Marna-Rose works full-time as an administrator and she and her husband find yoga a great way to re-energize. “One piece of advice I would give to other grandparents raising a grandchild is ‘Remember, you know how to do this. You can manage.’ Because they do. They’ve already raised their own kids, so they have the life experience to have their grandbaby full-time. Use your friends for support.”

Read More

Mom writes book to help kids talk about differences

By Louise Kinross

“This is me,” Sheriauna said proudly when she saw the book her mom Sherylee Honeyghan had published.

The cover is of a young black girl wearing a tiara, smiling at herself in the mirror. She has one hand.

Growing up, Sheriauna, now 10, didn’t see herself in the books and toys around her. Dolls “aren’t black, don’t have hair like me and have two hands,” she’d tell her mom. The only time Sheriauna saw herself was when she drew her own pictures. “She always drew herself without her left hand,” Sherylee says, noting that she was born with an amputation below her left elbow.

I am Sheriauna is a new children’s book Sherylee wrote six years ago, when Sheriauna was four.

“When she was younger she didn’t have the vocabulary and emotional regulation to explain ‘this is why I am the way I am,’” Sherylee says. “If children stared or asked what happened to your hand, she’d get frustrated and would cry. I wanted to open a conversation between children and the adults in their life where they could start to understand what an amputee is, and that people with differences are people, too.”

The book covers Sheriauna’s birth and her first prosthesis, fitted at Holland Bloorview. It talks about the things she can do with her prosthesis, and the things she does better without it. “It includes her encounters with other people and how that made her feel,” Sherylee says. “I explain why people might stare or be curious, because she doesn’t look exactly like them. The message is that we’re all different, and the world would be a boring place if we were all the same.”

When Sheriauna was small, Sherylee taught her to say “I was born this way and I’m special” when others asked about her arm. “When we were raising her, we always told her ‘God made you this way and everyone is different in their own way.’”

Sherylee says she wrote the book with simple language, from the perspective of a four-year-old, so that it’s easy to understand.

Today, Sheriauna is a social butterfly who adores hip-hop and loves to help others, her mom says. “She’s at the age where she can be her own advocate and participate in conversations. She’ll be involved in promoting the book and the message behind it.”

Sherylee hopes to launch a website for the book in the next couple of weeks.

She encourages parents to talk openly with children with physical differences. “My advice, first and foremost, is don’t shy away from the conversation with your child. From the get-go I would always roll up Sheriauna’s sleeve, for her mobility and accessibility. The social worker told me ‘You want to let her know that it’s okay to show your stump, to roll up your sleeve, and for people to see that there’s nothing wrong with what’s there.’”

Sherylee says that while it’s natural to want to protect your child, “the reality is that we can’t be there every minute. We have to equip them with the vocabulary, understanding and messaging to take with them, to get them through awkward moments and to feel more empowered.”

Like this story? Sign up to receive our monthly BLOOM e-letter in your inbox.

Read More

Asha 'reshaped the way I look at the world'

By Louise Kinross

I heard this amazing interview with Ron Buliung, a professor in transportation geography at the University of Toronto Mississauga. He’s collecting data on a research project that looks at how children who use wheelchairs and walkers—and their parents—view accessibility at home and on the child’s trip to school each day. The project grew out of Ron's family's experience trying to make their front yard accessible for daughter Asha, 5, who drives an electric wheelchair. BLOOM talked with Ron about how his personal and professional life came together after his daughter was born with spinal muscular atrophy (SMA) type 2, a degenerative condition that affects the muscles.

BLOOM: Tell us a bit about Asha.

Ron Buliung: There’s a difference between how she, and we, view how she’s affected, and the clinical description that emphasizes what she can’t do. Asha’s unable to walk and never crawled, but she can sit independently. She drives herself around in a 300 lb., $26,000 electric wheelchair.

BLOOM: Oh my goodness. Have you heard about the researcher in the U.S. who adapts ride-on toys so that kids with disabilities can get moving at an earlier age? He has issues with the cost and lack of innovation in the industry.

Ron Buliung: No, I haven’t. But I agree that there’s no innovation. Why does Asha’s wheelchair have to be 300 pounds when a formula 1 race car body can be made from carbon fibre? And a lot of the technology design is medicalized. For example, Asha needs a hospital bed. But there’s no reason it has to look like a hospital bed. Many things that we need are drab and bland and dehumanized from a design perspective.

Asha’s needs are like many kids with her type of SMA—they centre around her respiratory health and mobility. She uses a BiPAP every night as a respiratory therapy to help her deal with mild apnea and to help with lung development. She has a hard time expelling secretions and had a lot of pneumonias when she was younger. In terms of the interventions she requires and the teams involved, it can mean a lot of effort and stress and sleep deprivation for us.

BLOOM: What’s she like as a kid?

Ron Buliung: She’s very, very smart. I’m kind of a bit of an introvert and she’s an extrovert. Just the other day we took our dog to the vet and Asha struck up a conversation with a stranger about cats that I wouldn’t have [initiated]. She’s always reaching out with her social skills.

BLOOM: What does she like?

Ron Buliung: She belongs to Young Voices Toronto which is a choir. She loves singing, music, art. She takes an art class on the weekend where she’s doing all kinds of painting and mixed media.

BLOOM: Does she have fine-motor issues?

Ron Buliung: SMA is degenerative, so people gradually lose some of their abilities. But right now she’s writing letters and doing what she needs to do. She’s in senior kindergarten in an elementary school that can accommodate children with physical disabilities.

What’s annoying is that her school is three-and-a-half kilometres away and we live 500 metres from the public school her sister goes to, which is totally inaccessible. It would be nice if they could be at the same school. She likes school and does well at it.

BLOOM: Is her school accessible?

Ron Buliung: They’re working toward creating more accessible spaces. Asha talks about being excluded by environmental barriers. Recently, she said there’s a concrete curb that separates part of the playground from the rest of the tarmac and she can’t get over it in her wheelchair. She knows that going on the [play] equipment won’t work for her, but she wants to be closer to the other kids. She gets pleasure out of watching kids do things. She was sad about that curb. We have to go and see what’s happening and we haven’t had time to do that yet.

She has a full-time educational assistant that she adores. But the process of getting that one-on-one is challenging. To justify the full-time EA we were told you almost need to demonstrate the need for two, in order to get one. We all know the school system is stretched extremely thin. When she first went to junior kindergarten she had a part-time EA and a bit of nursing support. But that also ended. Another weird thing was trying to figure out who can perform labour inside and outside the school. There were a lot of weird rules that can come down to the politics of labour getting in the way of the care of children.

BLOOM: What’s been the most challenging part of raising Asha?

Ron Buliung: The biggest challenge is having the help in place so we can function. For example, Asha needs to be turned over during the night, and she needs her BiPAP monitored. We have a constellation of services to help us so that we can sleep. But it takes an enormous amount of work to make that constellation function. And because there are many individuals operating within it, people drop the ball and we’re left picking up the pieces and rebuilding parts of the system. When a nurse doesn’t show up, or there isn’t a good relationship between Asha and that person, it can be very challenging.

BLOOM: You said you and your wife both work. How do you function if a night nurse cancels?

Ron Buliung: There’s a reason why they use sleep deprivation as a form of torture. Sleep is a common theme in our conversations. Even last night Asha woke up and was very upset at 4 a.m. and I went and helped the nurse with repositioning her. Within the last few weeks, two of our key nurses were allowed to go on holiday at the same time. It blows my mind, when someone’s entire job is scheduling, how we end up doing the worrying and sorting that out behind the scenes.

BLOOM: There have been a number of stories on Global about parents’ inability to get reliable night nursing for their kids.

Ron Buliung: The work of childhood disability represents a part-time job within the household. There isn’t a day that goes by when I’m not having an e-mail conversation with our nursing providers.

I’d say the hardest challenge changes over time. When we first got Asha’s diagnosis we were dealing with the shock and quite frankly, the disappointment and sadness, and the losses accumulate for everybody. No matter how you want to conceptualize exceptionalities, there are, because of the environment we live in and the systems we use and participate in, real limits. There are amazing possibilities as well, but there are also things that are very, very hard to do.

When we first got the diagnosis, my wife Tara and I would wake up in the morning and for 30 seconds we’d forget. And then we’d remember and start crying. And it wasn’t just crying—it was the worst, gut-wrenching, agonizing bawling. That went on for six months. We were given a relatively negative prognosis that Asha might not make it to kindergarten. She’s already exceeded those expectations. I believe she’s with us today and healthy and happy because we worked our asses off, quite frankly, to make sure that things are in place for her to have a good quality of life and for her health to be good. We’re on top of it, but it always feels like we’re just barely on top of it.

BLOOM: How did you move forward from those early days stuck in grief?

Ron Buliung: Time. And also, eventually you make a decision that you’re going to step up and do this and handle it and figure out what to do. I can remember coming to Holland Bloorview to get a cough-assist machine, and I thought ‘I don’t want a cough-assist machine, I don’t want any of this in my life.’

Then time moves on and you start working on health prevention and intervention, and Asha is developing and becoming a person, and you’re putting your family together and fumbling through, and it happens. You have to decide that you’re going to commit to it. That’s an important piece. You have to consciously say ‘I’m onboard to do this.’ And some people don’t. The rates of marriage failure for families who have a child with a disability are higher. But you can get support for that also.

Over time we’re getting over our grief, but you don’t ever ‘get over it.’ It is always there. We talk about anticipatory grieving and loss, particularly with something degenerative that can become acutely critical very quickly. There’s a chronic stress in your life around that.

BLOOM: What do you do to help cope with that stress?

Ron Buliung: I do a lot of biking. I’m an obsessed cyclist.

BLOOM: Do you bike to work?

Ron Buliung: Yes, I bike to Mississauga which is 30 kilometres. That takes about an hour.

BLOOM: So you’re biking two hours a day?

Ron Buliung: Yes, I do a couple of hours every day. But it’s not enough. You have to work on your mental health. Of course they’re not disconnected. You see in the medical literature that people who engage in regular physical activity are less likely to develop depression and anxiety.

BLOOM: Is there anything you’d recommend for parent mental health?

Ron Buliung: I think there’s a stigma attached to reaching out around mental health issues. I think parents should take everything they can get, whether it’s a social worker at Holland Bloorview or using their employee assistance program at work, if they’re lucky enough to have one.

In terms of challenges, accessibility is a massive challenge. From the moment of Asha’s diagnosis, we walked out of the hospital and looked around and everything looked different to me. I saw barriers everywhere. Later, just getting Asha to school involved a massive amount of work and stress to transform the front of our property so she could get from the house in her wheelchair to the school bus. The city did not make it easy. There was no box to tick to say that you needed to transform your front yard into a parking pad because there’s a child with a disability. It took two years!

In one of our initial meetings with our local councilor, she asked ‘Couldn’t you just carry her?’ My answer was: ‘She’s not a bag of groceries.’ And that totally ignored the fact that she’s going to grow and maybe she’d like to have some independence.

BLOOM: If you could change one thing in the health-care system, what would it be?

Ron Buliung: Not being able to move things forward fast enough is a chronic frustration with our family and others. Right now there’s a clinical trial for a drug therapy that’s been shown to, in some cases, get children with SMA type 1 walking. But it’s incredibly expensive—$750,000 for the first year. Health Canada is reviewing the drug in an expedited review process, but I believe they’re only looking at it for children with type 1 at the moment. Where does that leave us?

While we’re waiting for a cure, having more support available.

BLOOM: Like with night nursing?

Ron Buliung: Yes. More reliable, regular support that is carried out with a higher degree of professionalism. When I talk about professionalism, I think a lot of families are conditioned to expect not very much. A few times we ended up keeping people around too long because we were afraid that someone was better than no one at all.

BLOOM: What’s the research you’re doing now related to accessibility?

Ron Buliung: We have 12 to 15 families and we’re doing something called photovoice ethnography of the trip to school. Children and their parents are interviewed separately, but they also take photos from their home to the lot of the child’s school. The photos are used as a cue in semi-structured interviews where parents and kids share the good, the bad and the ugly of access to education.

One of the things we want to do is indicate every institution that is involved in an aspect of the school trip. It could be an agency, the bus operator, the bus driver, the school board, the province of Ontario, the City of Toronto. We want to look at how institutions either enable or produce or reinforce disability. We’re also looking inside the home at things kids and parents see that could make things easier. They have different points of view.

BLOOM: You mentioned in your View to the U interview that before you incorporated disability issues in your research, your work was a protected space, distinct from the challenges at home.

Ron Buliung: I think my initial concern was that it might be a bit overwhelming, but I don’t have that concern anymore. I feel I have this position of privilege and maybe I’m in this position for a reason. I’d like to use it to do work that’s meaningful for me and helpful to others. I teach a course in transportation geography and I’m able to bring something to those courses in a way I hadn’t before.

I’m also plugged in to the regional community of planners and government planning for active and sustainable school transportation. I wrote a series of studies on childhood disability and transport and they had a conversation about how disability can be plugged into what we define as active school transportation. They were thinking about walking and cycling. They weren’t thinking about kids wheeling or other ways of getting there. I can engage policy makers around this stuff, so our kids don’t get excluded from site planning for new schools.

BLOOM: You said that you used to teach a course that included some content on accessibility before Asha was born.

Ron Buliung: I did. But I couldn’t relate to the content in the way I do now. I’ve always been interested in social difference and mobility, but I hadn’t plugged disability into that interest, which was a shortcoming of my own. I was naïve and unable to meaningfully connect with the subject.

Asha is one of my greatest teachers. She reshaped the way I look at the world and that’s a huge privilege.

In my graduate research group, two of my PhD students are working on disability and accessibility. They wouldn’t be doing that without Asha. Asha is the motivation and inspiration for all of this work.

Read More

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.

Read More