Grandview Kids

Every Child And Youth Living Life At Their Full Potential

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Janae’s Story: Paediatric Stroke Awareness Month

Interviews

When 25-year-old Janae is not studying, she professes her love of singing, going for walks and spending time with friends and family. She graduated from Toronto Metropolitan University, receiving a Bachelor of Social Work (BSW) degree with distinction, and is currently pursuing her Master of Social Work (MSW) with a focus on children and families at the University of Toronto. Janae’s studious disposition stems from her mom, Catherine’s, unwavering validation and her desire to support children and youth with physical, communication and developmental needs and their families. Her lived experience, although riddled with barriers paired with social challenges due to her exceptionalities, has compelled her to become an advocate for others. 

Janae was born several weeks early and had a low birth weight but was otherwise deemed healthy enough to go home. However, in the two weeks that she was home, Catherine, a paediatric Registered Nurse at SickKids Hospital, noticed that Janae was not breathing or sucking appropriately. She brought her to a local hospital twice, only to be dismissed as suffering from postpartum depression. Intuition led her to visit SickKids Hospital, where Janae was admitted and diagnosed with congenital heart disease (CHD). A procedure called a “cardiac catheterization” revealed several heart defects and the need for heart surgery. However, post-procedure, Janae suffered a massive stroke. The initial prognosis was poor, prompting her physician to plainly state that Janae’s condition was “incompatible with life.” This life-altering experience was devastating for Catherine, who thoroughly understood the severity of her daughter’s condition with her medical background, but as a mom, felt it very hard to absorb. 

Janae’s first six months of life were spent at SickKids Hospital. She had several heart repairs and required a temporary feeding tube and a pacemaker. Once stable enough to be home and out of their program, she received home care due to her medically fragile state. Janae received a secondary diagnosis of Cerebral Palsy (CP) as the stroke severely affected the function of her left side, along with her speech and sight. Eventually, her care was transitioned to Grandview Kids, where she would receive many years of Occupational Therapy (OT), Physiotherapy (PT), Speech-Language Pathology (SLP) and care within the Botox ® Clinic.  

With lots of hard work and determination from Janae and her family, Janae learned how to crawl, walk and talk at her own pace. Grandview Kids’ OT supported her by giving her tools to help with school. The stroke caused her left hand to be spastic and at one point they curved inwards and looked fisted. She used grips for pencils and equipment to keep her papers in place for writing, as she did not have the stability to hold them with her left hand. Janae described feelings in her left leg akin to “sleeping” or numbness. Her PT worked on improving Janae’s strength and mobility. In early childhood, she had splints in both hands and legs. She also received Botox ® injections for her left hand and leg, which she continues to do presently, for their effectiveness in reducing spasticity.  

Every developmental stage brings on new challenges, but the biggest hurdle that Janae continues to face is the social aspect of life with exceptionalities. She required special support in school, but kids would question and tease her. “This made me feel very out of place due to the accommodations, but I was just trying to get to the same place everyone else was already at,” Janae admits. High school was harder and meaner when it came to her peers and teachers, who sometimes dismissed her accommodations as trying to get out of certain classes. She connected with another Grandview Kids youth and banded together against the negative social interactions they faced at school. She began to advocate for herself more, vocalizing her needs and requesting support letters from her Grandview Kids PT and Botox ® Clinic physician.  

Catherine ensured that Janae participated in as many Grandview Kids programs as possible to enhance her independence. She attended programs that taught life skills like cooking, dressing and caring for herself, as well as those that provided information on maturing, puberty and body image.  

“Grandview Kids tailored programs to where Janae was based on her capabilities, which is amazing to think that this process began over 20 years ago,” Catherine recalls fondly. “Other kids and youth in the classes had varying disabilities, so she didn’t feel singled out. I took every opportunity for Janae to see not only the negative piece of school but also encouraged her to see that other people were also dealing with challenges in life.”  

Janae confesses that she sometimes still has doubts about her potential, but her mom is and always will be her biggest advocate. “My mom is always saying to do my best and that I’m able to achieve anything. It’s easy to self-doubt and focus on your disability when everyone sees the disability and not who I am. It has been a real struggle to be okay, but I’ve learned that that does not define me as a person,” she openly shares. Her mom has taught her to stop “putting herself in the box” and that she can “overcome the odds.” Janae acknowledges the need for a strong network and support system, as it influenced how she viewed herself as a black woman with a disability navigating life. Catherine’s constant affirmations prompt her to encourage others in their journeys and teach them about the importance of self-advocacy. 

Justine’s Story

Written by Ambassador Advisor and Grandview Kids parent, Abby V.

Justine is a dedicated, second-year honour roll student at Durham College studying social service work. If she is not doing schoolwork, which is seldom the case, she is either honing her craft as a talented artist in digital and traditional art or doing some form of creative work. Her drive goes beyond her personal goals as she also excels in advocating for people with mobility issues and wheelchair users.

Justine was born prematurely and began her journey with Grandview Kids when she was only six months old. Through a multiteam assessment, it was determined that she would likely have some form of disability. Once the signs and symptoms presented themselves through missed milestones, she was diagnosed with spastic quadriplegia cerebral palsy (CP). Over the years as a Grandview Kids client, she went on to attend Grandview School and receive Medical Services and therapies, including Physiotherapy, Occupational Therapy and Therapeutic Recreation. At a young age, she would also become a Grandview Kids Ambassador, campaigning for the construction of The Jerry Coughlan Building (Grandview Kids’ new Ajax-based headquarters), marking the start of her advocacy work.

 “Without [Grandview Kids’] services, I would be in a vastly different spot right now,” Justine thoughtfully assesses when recounting her years at Grandview Kids. “Part of the interpersonal work with Grandview, besides the physical aspects, was self-advocacy.” As she aged, more responsibility was placed on her to be able to take over her care and have her mom less involved. Justine uses a power wheelchair but manages to efficiently direct her care, oversee her pain management and plan her use of public transit. She distinctly remembers a time when sitting up for long durations was a challenge as she would slowly lean over and be unable to hold a conversation for long. Through hours of painstaking therapy, stretches, enduring Botox injections and adapting to equipment changes, she has learned the importance of self-reliance, independence and self-advocacy, which she now carries over into her work.

A significant barrier that Justine continues to face is explaining what she endures to her peers, teachers, support staff and even those closest to her. Constantly educating people and advocating for herself as she explains her needs and paints her perspective is emotionally taxing. Another hurdle is the lack of social, physical and structural accessibility in the community. “Grandview Kids is built to be accessible, but most places, especially older buildings, are not,” Justine says. She is always reevaluating the accessibility of spaces she is in for herself and others.

Justine’s exceptionality, talent and inspiration continue to reach many people. She won the 2024 current client “Spirit of Grandview Kids” award. Nominated by her rehabilitation team, they testify how they have learned so much from her. “She can tell her therapy team how various tasks impact her and how they make her feel. She participates in her clinic appointments, and she lets the team know how our services affect her day: both good and bad!” Justine has years of practice and is very well-versed in her care, and “will use her voice to speak up for the clients that cannot tell us verbally how Botox injections feel or that AFO’s [ankle foot orthotics] can make your feet cold,” her therapists attest. “Justine is Grandview Kids’ vision, mission and values personified. She is living life to her fullest potential and ‘crushing it!’”

Justine reflects on her own experiences and asks herself, “How can I be the solution for other kids?” She recognizes that kids and youth with physical, communication and developmental needs face unique challenges that can leave them having negative, although valid, emotions of hurt, worry and anger. “Keep your head up because it’s tough, and there are days you want to give in. As long as you feel best in your skin and happy with where you’re at, that’s all that matters. Your quality of life and your joy are all that matters. Everything else is a second thought.”

Interview with Scott Bremner, author of Durability: Braving the non-disabled world

We recently had an interview with Scott Bremner, the author of Durability: Braving the non-disabled world. Read what he had to say about his book, the writing process and his inspirations.

Scott Bremner, sitting in a chair posing for a photo wearing plaid shirt.
Scott Bremner

What inspired you to write this book about your life?

I believe it was the anniversary of the Ontarians with Disabilities Act, the first of two legislative bills to increase accessibility in this province. All these people who had been involved in advocating for the disabled community were in one room. Former Lieutenant Governor of Ontario, the late David Onley, and David Lepofsky, lawyer and advocate, were there, along with current and former politicians and members of the disabled community. 

While there, I met Marie Bountrogianni, who wrote the follow-up legislation: the Accessibility for Ontarians with Disabilities Act, passed in 2005. That was the final push I needed to write the book hearing the unique perspective of this woman—the one who put pen to paper on significant legislation. The idea of writing a book had been in my head for years, but seeing those people all gathered showed me that people cared and still cared. An entire community had been working on getting the idea of accessibility out there in the public eye for years. I knew from that day the book would happen in some way. That was inspiring for me. I saw a path forward, a way to do this.

What was one of the most surprising things that you learned when creating your book?

It wasn’t the book or the writing itself, but everything after it was written. Answering questions like, “how are you getting the book out there?” and figuring out whether to publish the book traditionally versus self-publishing or thinking about how to design the cover. It was all very much trial and error. Durability was written for a specific purpose, so I want as many people as possible to read it.

Scott, author of Durability, holding up his book, Durability.
Scott holding his book, Durability.

What does the title mean to you? Why did you choose it?

It was the name of the show I hosted on Rogers TV for five years. I like it because it’s always had two meanings: Durham ability (I live in Durham Region) and Durability, which means strength. People with disabilities go through a lot. We’ve been put through a lot and have had to handle a lot, personally and professionally.

Durability might as well be the motto for the disabled community. But that doesn’t mean those challenges don’t affect us because we face barriers constantly. We get through the day and meet challenges at any age. That doesn’t mean we don’t need help. That we don’t need more people to get involved in the accessibility movement. We do. To progress, to gain traction, readers of all kinds benefit from knowing the adversities we face and have faced in the past.

Can you tell me a little bit about the book? How will individuals (with or without disabilities) benefit or learn from your book? What do you hope readers will gain from reading your book?

The book was written in three sections: the first part is a memoir, the second is an advice guide for people with disabilities and parents with children with disabilities, and the third part is a political history of disability and accessibility legislation throughout the province, the country and North America. As a journalist, who went to school and had a career in journalism, it was important for me to talk with experts about topics important to persons with disabilities.

There are things I didn’t know myself, but I learned from researching while writing my book. That is part of the joy of writing and journalism for me, finding out something you didn’t know and getting clarity for people, especially those who were there, and that was an interesting experience.

I’ve had a lot of great conversations with politicians and stakeholders. I asked them not to hold back. It was the same talking with my friends and family about how they saw things. These people were real with me. Even though I’ve made mistakes, looking back at the time, I thought I was making the right decision because when you’re 10, you don’t think about how those decisions will affect your 30s or beyond. I’ve grown as a person, and I matured while writing Durability. You learn just as much from failing as you do from succeeding. If I can make things easier for people by writing a book where you can understand other people’s points of view, it benefits the readers.

Scott Bremner received the Queen’s Platinum Jubilee Medal in 2022.  

Scott’s book is available on Amazon and at Blue Heron Books in Uxbridge.

Follow Scott online & his other social media platforms:

www.durability.ca 

Facebook

Twitter

Instagram

TikTok

Nutrition Month 2022

This March, dietitians across Canada are coming together to share how they can support you and make your future a healthier one. We interviewed Grandview Kids’ Registered Dietitians, Heather-Ann and Shelley, about their roles at Grandview and what being a dietitian means to them! 

Meet Heather-Ann!

What is your role at Grandview Kids?

I am a Registered Dietitian working with the Complex Care team and Nutrition Clinic.

What does a typical session with your clients look like?

A typical session with clients would include a discussion with the parents and/or child to determine how I can best support them in achieving their nutrition goals and needs. This discussion may include but is not limited to a review of past medical history, current dietary intake, medications/supplements, bloodwork, feeding environment, social history and measuring anthropometric data. Once I have completed my assessment, I would then provide evidence-based nutrition recommendations in a collaborative manner with the patient and/or family to enhance nutrition status and health outcomes.  

What inspired you to become a dietitian?

My first interest in nutrition started as a young athlete looking for ways to optimize sport performance. This led to studying Human Nutrition at St. Francis Xavier University, where I became intrigued by the opportunity for Dietitians to improve the health and well-being of others across the lifespan. I was inspired to become a Dietitian so that I could help others achieve healthier and happier lifestyles through the power of nutrition!

If you could give one nutrition tip to parents/caregivers of children and youth, what would it be?

I would recommend getting children and youth involved in the preparation of meals! Involving children in making family meals and snacks provides the opportunity for teaching valuable life skills, learning about their family’s culture and cooking traditions, as well as exposing the child to new foods.

Meet Shelley!

What is your role at Grandview Kids?

I work at Grandview Kids as a registered dietitian in the Nutrition Clinic. My role is to identify nutrition risks and assess the nutrition requirements of children and youth.  My goal is to work with families and their children to ensure optimal feeding and nutrition for their child’s growth and development.

What does a typical session with your clients look like?

A typical session involves review and assessment from the referring individual, further identifying nutrition issues to help families with their child’s feeding or health concerns. My role of late has changed to include a telepractice consult model.  This practice has had many benefits for the families I serve.  I provide a consultative service to parents/caregivers. Initial nutrition assessment times can be lengthy and telepractice has helped in this regard as the child will be in the comfort of their home and not sitting for an extended duration during the appointment.  The Nutrition Clinic Clerk notifies families in advance of their appointment to prepare a 3-day food record of typical nutrition days. This information is reviewed during the assessment and recommendations are then provided to optimize meal planning, feeding, nutrition status and growth.

What inspired you to become a dietitian?

My love for working with the pediatric population was always an inspiration of mine and so tagging this with nutrition was a great fit.  Who knew I would go on to be a dietitian when I was that child, as I only ate honey sandwiches and my vegetable of choice was corn! From as early as I can remember, my parents continued to provide variety and opportunity in my meals, ensuring a balanced structure as well as an enjoyable meal experience.  In time, my food variety expanded and my interest in nutrition and dietetics flourished in my later years.

If you could give one nutrition tip to parents/caregivers of children and youth, what would it be?

My managing mealtime tip: make mealtime enjoyable and a priority. Be a role model, eat together and get kids involved in the kitchen early on with a focus on food variety from Canada’s Food Guide.

Thank you for sharing a bit about your journey with us all to commemorate Nutrition Month 2022, Heather-Ann!

Visit the Nutrition Month website to learn more about how you can participate!

EKO Scholarship winner, Owen DiManno.

In March, at the top of 2021, soon-to-be college student Owen DiManno was awarded an Empowered Kids Ontario (EKO) Scholarship, a prestigious award only presented to a select few inspiring individuals. No word is better suited to describe Owen than “resilient,” says EKO as they officially announce him as a recipient of their scholarship. It is hard not to agree with this fair assessment as Owen has overcome quite a bit of adversity at a young age and still manages to show up for himself and others in various ways.

To better explain how Owen has ended up as an EKO Scholar, some background information on his journey is necessary.

In April of 2018, Owen was at his first High School Track Meet when he suffered a dissected carotid artery, which caused an ischemic stroke, describes Owen’s mother, Rebecca DiManno. After his injury, Owen underwent life-saving surgery at Sick Kids Hospital and spent several months bouncing around hospitals in recovery before arriving at Grandview Kids. Since arriving and spending the past three years at Grandview Kids, Owen has built incredible, lifelong relationships with his therapists and fellow Grandview Kids! His physical therapist, Corrie, nominated him for the scholarship, citing his resilience and positive attitude as a couple of the many reasons he deserves to receive it.

One of the reasons that landed Owen the scholarship was his steadfast commitment to raising awareness for Paediatric Stroke, helping to start a foundation to support this cause called Achieving Beyond Brain Injury. His mother has helped him with the Foundation from the get-go and notes that “from the moment he woke up from the induced coma, he started volunteering for stroke research studies.” After interacting with other kids who had suffered a stroke, it only further fuelled his desire to be a loud voice and support system for kids who he saw also suffered a stroke.

In addition to his work with his Foundation, Owen, as the enormous sports fanatic that he is, joined Grandview Kids’ sitting volleyball team. In 2019, the team competed in the annual ParaSport games, ultimately finishing fourth in the entire province! Before his stroke, Owen was involved in competitive sports, citing his competitive nature as a driving force in his life to overcome various obstacles, whether they be pushing through his rehab journey or achieving personal goals.

Portrait photograph of Owen DiManno posing beside his mother, Rebecca, in front of a lush garden.
Portrait shot of Rebecca and Owen DiManno.

Given his drive, determination, and observable skill, it’s no doubt that Owen has become quite the role model for the younger kids at Grandview! When asked how he feels about being a role model for the younger generation at Grandview, he states:

I love being with the younger kids and feel that I’m able to show them that having a disability doesn’t slow me down, and I’m able to adapt to different situations, and they can too. Being involved with the Grandview Kids sitting volleyball team was very important to me, and I loved the inclusivity and team building, we ranged in all ages and abilities, but we were one team. Being a role model helps me because I know that my attitude must remain positive, and that rubs off on everyone you meet.

Fast-forward to March of 2021: Owen had officially become an EKO Scholar!

“I felt quite honoured to be awarded such a competitive scholarship,” Owen states, further mentioning that “EKO is a wonderful organization that provides kids with disabilities, like me, with opportunities to achieve their dreams and goals.”

This past September, Owen started his first year at Durham College, pursuing an Ontario College Diploma as a Developmental Services Worker. He notes that the time he spent living at the rehab hospital significantly impacted his outlook. Owen explains

“[living at the rehab hospital] allowed me to experience a multitude of people with different abilities and the clinicians that worked with all of us. I want to make a difference in someone’s life, I want to work with kids with different abilities, and a lived experience is something that can’t be taught.”

As Owen enters the next chapter of his life, it goes without question that no matter what he aims to accomplish next, his determination will be a driving force in what ultimately allows him to achieve it.

Dr. Meghann Lloyd celebrates a decade as Grandview Kids Research Associate

Dr. Meghann Lloyd on a field high-fiving a little boy.
Grandview Children’s Centre for U.O.I.T. May 16, 2012. (Ian Goodall/Goodall Media Inc.)

Dr. Meghann Lloyd, Associate Professor, Kinesiology at Ontario Tech University, celebrates her tenth anniversary as Grandview Kids’ Research Associate! Over the last decade, Dr. Meghann Lloyd has worked closely with Grandview Kids, furthering research focused on childhood disability. In commemoration of this milestone, Dr. Meghann Lloyd reflects on her time with Grandview Kids and looks towards the future as she answers some of our questions.

Why did you choose a career focused on childhood disability?

During my undergraduate degree at Acadia University, I volunteered in the S.M.I.L.E. program, where I was paired with a young boy with autism, and we played together on Saturday mornings, working on goals. It was in my third year that I realized the adapted physical activity was an academic field of study. I also had the chance to do an Honours research project in my fourth year of undergrad, and I knew very quickly that this area was what I wanted to pursue for my career. While I enjoyed working with children with typical development, I felt strongly that the children with disabilities were more fun, more of a challenge, and far more rewarding to work with.

Three little boys posing in and outside of play tubes in Dr. Meghann LLoyd's lab.
Children Dr. Meghann LLoyd has worked with at her lab.

What has been your most significant accomplishment as the Grandview Kids Research Associate in the past 10 years?

My most significant accomplishment as the Grandview Research Associate has been the longevity of trusting relationships. Gaining the trust and respect of the staff and clinicians at Grandview allows me the freedom to propose my own research questions and the commitment to pursue the questions that Grandview puts forth. To have been able to foster and commit to this relationship over the past ten years has been a privilege.

Little boy squatting on top of a tall block in Dr. Meghann Lloyd's lab.

Reflecting on your past successes and now towards the future, what is the most ambitious goal you hope to realize at Grandview Kids?

My goal is for the research myself and my graduate students complete to be relevant to Grandview, but more importantly, actionable. I also envision a day where Grandview has the capacity to ask its own questions and execute the studies. To achieve this, substantial external funding would need to be secured and the infrastructure in place to implement the plans. If we realize this goal, Grandview would establish itself as a research hub east of Toronto in pediatric rehabilitation and adapted physical activity and would be able to train the next generation of researchers, as well as clinician-scientists. This would benefit Grandview clients but also the academic fields.

Little boy holding a toy bat up to a softball in Dr. Meghann Lloyd's lab.

Thank you for a stellar decade of dedicated work and research, Dr. Meghann LLoyd. Having you as a Research Associate at Grandview Kids, we know to expect great things in our future!

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