Stories

Brain Injury Awareness Month, recognized each March, provides an important opportunity to bring attention to the prevention of traumatic brain injury (TBI) and to promote strategies to improve the quality of life for persons living with TBI and their families.

Claudia N., a Grandview parent and member of our Family Advisory Council (FAC), tells her son Reid’s story:

“Brain injury is invisible and often misunderstood. The scars may not be obvious, but they are there. They show up in the way you move, talk, and process information. My son acquired a traumatic brain injury (TBI) after a rare complication of brain inflammation during influenza.

Claudia taking a selfie of herself with her two children. — Claudia N., with her children.

Claudia's son and daughter in a portrait like photo. — Claudia N., with her children.

He was a rep-athlete in hockey, basketball, soccer and baseball. The more contact he had in sports, the better. Now he can no longer have contact. This was his identity. He had to re-learn everything, from riding a bike, walking, and running to tying his shoelaces.

Having to answer the question, “why doesn’t my brain or body work like it used to?” daily is heartbreaking.

Grandview Kids showed me there is hope after a TBI, but it begins when it is taken seriously by others. Instead of hockey, they introduced him to golf. Instead of tackle football, they are teaching how to swim. He was resistant at first but is now secretly loving it. They showed him that there are different directions that can just be as fulfilling. When he wanted to give up, they simply wouldn’t let him.

Claudia's son, Reid, sitting in the hospital bed for rehabilitation. — Reid in the hospital for rehabilitation.

Claudia's son, Reid, playing wheelchair basketball with his friends. — Reid in the hospital for rehabilitation.

As his mom, seeing him feeling so lost every day is excruciating, and I wish I could trade places with him. Disabilities come in all shapes and sizes and visibilities. Yes, this injury is invisible, but the impact and effects are as lifelong as visible ones.

The good news is that with the right support and accommodations, there is light at the end of the tunnel. Next time you meet someone with a TBI, just know how much more there is behind those sweet eyes looking back at you.”

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:

World Birth Defects Day is observed on March 3 each year and unites people and organizations working in the field of birth defects, also known as congenital anomalies, congenital disorders, or congenital conditions.

Globally, an estimated eight million newborns are born with a birth defect every year, of which around 300,000 die due to associated complications. Although it started as an annual event, this day has now become a movement for significant improvement in birth defects prevention and care.

Grandview Kids’ client, Shayaan, was born with a birth defect called Amelia. His mother and a member of the Family Engagement Team at Grandview Kids, Fadia, tells their story:

“The day my second child was born was not a day of joy or celebration for us, but a day of mourning. Our son, Shayaan, was born with a congenital anomaly called Amelia, which means he was born without both arms above the elbows.

Shayaan as a child in a painting/colouring class. — Shayaan as a child.

Shayaan learning to eat. — Shayaan as a child.

As parents of a healthy first child, we never anticipated having a child with a birth defect. Shayaan’s disability brought a multitude of questions and fears, such as how he would learn to walk, use the toilet, eat, and even get married. We went through all the stages of grief, including denial, anger, guilt, depression and finally, acceptance. It took me five months to come to terms with reality and nearly a year for my husband.

Taking Shayaan out in public was another challenge for us as we struggled to cope with the stares, whispers and hurtful comments. Despite our efforts to conceal his disability, we found that we could not. However, it was our seven-year-old son who taught us to focus on the positives. He pointed out that Shayaan still had eyes, ears and tiny feet, and we realized that we had been fixated on what our baby lacked instead of what he possessed.

Shayaan’s disabilities presented new challenges as he grew older, but we found comfort in the network of supportive parents we met through various support groups. We had genetic testing done twice, which revealed that Shayaan’s birth defect was not genetic. Not all birth defects are caused by gene mutations; some are caused by unknown reasons.

Now, at 16-years-old, Shayaan has undergone 16 surgeries and continues to experience pain, but he remains a remarkable young man with aspirations for the future. We quickly learned that he always found ways to accomplish things, and we allowed him to navigate challenges on his own. Shayaan has become an advocate and has been partnering in research to bring awareness by sharing his personal stories and his lived experiences.”

Rare Disease Day is an international event held on February 28 to raise awareness about the impact of rare diseases on people’s lives and to emphasize the need for research. Canadian families with rare illnesses are facing extraordinary challenges. These include misdiagnosis, unnecessary surgeries, social isolation, financial hardship and lack of treatment options.

Grandview Kids client, Xander, was born with a rare disease called Moyamoya. His mother, Laura, tells their story:

Baby Xander after surgery. — Baby Xander

“At 10-months-old, my son had a seizure, which we then found out was a stroke. The stroke damaged the right side of the brain. We were searching for answers as this was completely out of the blue. Once the doctors did an MRI and an angiogram, they found out that he had a rare condition called Moyamoya. The meaning of “a puff of smoke” in Japanese. This is where the blood vessels in the brain narrow over time, and it looks like they have literally disappeared in the MRI.

His right side of the brain and left side were narrow, so it was decided that he get bilateral brain surgery to help with the blood flow and to help prevent another stroke from occurring. But after only being home for four days, he had another stroke, this time damaging his motor control on the left side.

We ended up at Holland Bloorview for rehabilitation, where they worked with him to gain strength back in his left side, mainly his left hand. Since having the surgery, he is doing much better, but the doctors still must watch to make sure that other parts of the brain are not narrowing as this is a progressive disease and there is no cure.

As parents, it’s extremely difficult to deal with this diagnosis, but he has shown so much improvement. That makes it a lot easier to navigate his diagnosis and relax a little bit. We hope that one day there will be a cure.”

Welcome to the Grandview Kids Main Site Sensory tour!

The benefit of a sensory tour is to prepare you and your child or youth for not only what a visit a Grandview Kids will look like but also feel and sound like (e.g., the loud WHOOSH sound our sliding doors make at the front entrance). Watch the video below as Natasha and Alden navigate Grandview Kids’ Main Site in Oshawa, highlighting the sights and sounds you will encounter when you visit!

Natasha and her son Alden navigate the sights and sounds of Grandview Kids’ Main Site in Oshawa.

Click here to read the description of the Main Site Sensory Tour

Welcome to the Grandview Kids Main Site Sensory Tour!

We first start from the client parking, where Natasha and her son Alden head over to the main entrance of the Grandview Kids site.

When Alden walks through the door, it makes a loud sound, but that’s okay. Alden knows he’s safe when he visits Grandview Kids.

They make their way to the front desk to sign in. Put on new masks provided for everyone and sanitize their hands.

Now, Natasha and Alden head on to the waiting room where they wait for Alden’s therapist.

There’s lots of different rooms that Alden can visit. Sometimes Alden’s mom, Natasha (the adult) will have meetings in the conference room, when the client does their therapy.

For Occupational Therapy, Alden can use the gym or do activities at a desk.

Sometimes, Alden comes here for Physiotherapy. When he does Physio, he can do stretches and exercises.

When Alden comes in for Speech and Language, he plays games and does other fun activities.

Audiology is also down the hallway; Alden comes here when he needs to get his hearing tested.

Sometimes, the audiologist will touch Alden’s ears, but that’s okay! He can practice this at home before he comes in to visit.

Campbell Children’s School is a special school program. Alden’s mom (the adult) can ask his therapist for more information.

When Alden comes in for ABA Therapy, he has lots of fun! Sometimes, he gets to jump and play in Green 5.

On some visits, he also might get to visit the playground. He visits the playground with his therapist, but sometimes families get to visit, and Alden gets to play with friends.

Alden’s therapist helps so much! He has lots of fun visiting Grandview Kids!

All participants of the Bridges out of Poverty training sitting at their desks posing for a group photo. — On Monday, November 21, 2022, Team Grandview welcomed Aha! Processing Facilitator Suzie Johnson-Smith to guide our team through the Bridges out of Poverty training.

What is poverty?

For so many of us, we see poverty as a reflection of how much money is in our pockets.

But poverty is so much more.

In the Bridges out of Poverty training, Team Grandview learned that poverty is “the extent to which an individual does without resources.” The word “resources” is more than money. Resources can also include the ability to communicate in the local language, access culturally safe healthcare, and have the skills to cope with daily challenges.

We don’t all follow the same path in life. We each have different needs and access to resources. In some cases, we are born into a family with limited resources and are faced with barriers and biases that prevent us from having the resources we need. These barriers can be systematic – ingrained in the systems that are supposed to support us.

Other times, we find ourselves having steady access to resources. This helps us achieve our goals, feel safe, and connect with others. However, a crisis can send us into ‘situational poverty.’ Suddenly, we are left without the same access to resources as we once had.

When your journey leads you to Grandview Kids, we aim to welcome you, build a relationship with you, and treat you as an equal partner in your child’s care.

When you are in need of resources outside of what Grandview Kids can offer, we aim to support you and connect you to the programs and services you need. This can include additional funding to support equipment needs, local food banks, or programs that meet your child’s unique needs and interests.

A core value of Grandview Kids is to see the “whole-child and family-centred.” We look forward to learning more about the community we serve and the barriers or biases they may encounter. This work will begin in early 2023 and be guided by the voice of youth, caregivers and parents. We continue to aim to have your voice drive our programs and services.

Poverty is not an individual problem. Addressing poverty is the responsibility of all of us. Grandview Kids commits to continue to work with our community partners in the education, health and social services sectors to help bridge the gap, providing families with the resources they need so that all children and youth have what is needed to live life at their full potential.

For more information about the Bridges out of Poverty training, visit: https://www.peterborough.ca/en/city-services/bridges-out-of-poverty.aspx

References

Payne, R.K., DeVol, P.E., Dreussi-Smith, T. (2022). Bridges out of Poverty: Strategies for professionals and communities. (5^th EDs).

Stories

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

Welcome to the Grandview Kids Main Site Sensory tour!

What is poverty?

You Have Questions