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 firstname.lastname@example.org.