Stories

Paediatric Stroke Awareness Month is observed annually in May to bring awareness to the national crisis of paediatric strokes, a seemingly rare yet critical issue that often flies under the radar for millions of people. The month, since its creation in 2002, sheds light on the strokes and heart attacks occurring in children.

Grandview Kids Client Story:

Clarissa is four years old and lives with her parents, Megan and Zach, and her baby sister, Senna. She loves to watch movies, some of her favourites being Beauty and the Beast, The Little Mermaid, and Sing 1 and 2. She also enjoys playing princess, being at the playground, and dancing and singing along to music.

At three months of age, a Sick Kids Hospital visit was prompted by continuous eye-rolling. At Sick Kids Hospital, her parents were told that Clarissa had suffered a stroke around the time of birth that caused the development of a fluid-filled cavity, called a cyst, in her frontal left lobe. She was diagnosed with a rare disorder called Porencephaly and secondary diagnoses of Hydrocephalus, Epilepsy, and Right-Sided Hemiplegia Cerebral Palsy. Megan and Zach began to wonder what Clarissa’s quality of life and future would now look like. As first-time parents, their expectations were suddenly and drastically altered as her diagnosis affected her daily living. She would now need a team of medical experts, seizure medication, and therapy to learn to walk and use the right side of her body.

A referral to Grandview Kids for community support was made, and it has since made a world of difference in Clarissa’s life. The milestones naturally met by most children did not come easy, but Clarissa persevered in reaching her milestones as her parents were taught tools to support her success. Her Developmental Paediatrician offered medical care and resources for support. speech-language pathology helped her ability to communicate. Physiotherapy and occupational therapy directed them with equipment, stretches and exercises needed to overcome gross motor and fine motor skill delays.

With the countless appointments Clarissa has, having specialized services close to home is vital to managing their time efficiently, home life and Clarissa’s medical care. Through Grandview Kids’ early intervention, Megan and Zach were given the necessary tools that led to Clarissa’s successes. They still need to put in hard work, but they know that Grandview Kids will be with them every step of the way. They know that there is a community of parents who understand, caring staff and generous volunteers working together to change the lives of children and their families.

Megan and Zach share Clarissa’s story to help other parents on the same journey. It begins with a scary diagnosis that flips their world upside down. Schedules are suddenly full of medical and therapy appointments, and difficult decisions on childcare and work must be made. However, there are mountaintop moments that make it worth it.

Recently, “Clarissa auditioned for Toronto Kids Fashion Week and was selected to participate. She practiced for weeks, and when it was her moment, she put on a brave face and was all smiles! We were beyond proud to see her so confident and happy!” exclaims Megan. Grandview Kids continues to root for families like Clarissa’s as they strive for a better tomorrow of advocacy, awareness and inclusion.

Written by Peer Navigator and Grandview Kids parent, Danielle P.

When all three of my children were diagnosed with Autism Spectrum Disorder (ASD), it changed my life in a way I did not expect. My older two children hit every milestone early until they experienced a severe significant regression. They stopped talking, playing, looking at me and responding to their names. They started making repetitive movements that I now know are stims. A year after their diagnosis, my youngest child started exhibiting similar symptoms. I felt like a failure, and I missed who my babies were before they regressed.

By 2018, I found myself divorced with a 1-year-old, a 2-year-old and a 3-year-old, all diagnosed with ASD. I chose to lean into my grief and decided to observe my feelings without judgment. I cried. I journalled. I got therapy. I found respite workers and made self-care a priority. It was lonely until I surrounded myself with different friends and parents who also had children with disabilities. I started following disabled content creators online. I started being more open with my vulnerabilities. Slowly, I noticed that having three children with ASD was not actually as awful as I originally thought. As I allowed my world to expand, I realized a few important things about why their diagnoses felt so devastating in the beginning.

I’m ashamed to say that I pitied people with disabilities. I didn’t want my kids to be associated with “those type of people”. I wanted my kids to be “normal” because I thought that any deviation was bad. For the first time in my life, I noticed and addressed my own ableism. Once I let go of that way of thinking, I was able to explore this beautiful new community we belong to.

I had to let go of the expectations I had of my children. Some parents hope their children will excel in sports, pursue higher education, or have a specific career. As parents of kids with disabilities, we have the privilege of letting go of our expectations much sooner than other parents might. Among many other expectations, I wanted my kids to talk, look at me and be potty trained. I had to let go of those expectations and be open to the life my children were capable of and wanted for themselves. I had to learn to accept that my children for who they are.

My children are now school-aged, and I have a new partner who is very involved. My older two children still don’t speak but they are learning to use AAC devices. Pullups are still a part of our lives, but they may not be forever. My kids’ friendships may look different from the types of friends I had growing up, but we have found our people. We presume competence while providing support. We allow THEM to tell us who they are and what they want to do with their lives. I thought my life was over when my kids were diagnosed, and in some ways, it was. That life had to end for a new life to be discovered.

Written by Peer Navigator and Grandview Kids parent, Kristen M.

Ace was to be the missing puzzle piece to our beautifully blended family, but little did we know that he would open our eyes and hearts to a community that the puzzle piece (and infinity sign) represents.

Our youngest of five boys was diagnosed with autism in May 2020 at the height of the pandemic. His diagnosis came with both relief and grief. I was relieved that my mother’s intuition was that something was different about Ace-note and that I did not use the word “wrong” … that was intentional because there is absolutely nothing wrong with Ace. In fact, there is so much right with him that we are reminded daily of his extraordinariness!

The grief piece stemmed from our fear of the public’s lack of understanding and awareness of autism and disability culture. I was hit with the stark reality that as a mother of a non-speaking autistic child, I would most likely have to advocate and fight for Ace’s fundamental rights for the rest of his life. The rights that my four older sons are automatically granted…

However, my pity party did not last long. I immersed myself in all things autism and quickly connected with local parents of children with autism within the Grandview Kids community, and they soon became our family sounding board and dearest confidants. Then our circle grew larger when we enlisted the help of pediatricians, speech and language pathologists, behavioural therapists, and occupational therapists, just to name a few.

At that time, I thought I was building an army to fight for my son’s mere existence, but to my surprise, we instead organically grew a warm and welcoming village. A village that looks out for one another and rallies to protect our kids from the often mean outside world that this Mama Bear feared. A village where our children can be their authentic selves and where we caregivers can laugh or cry without judgment depending on what season we are currently navigating.

Navigation is the perfect word to describe my newest chapter of autism acceptance…Last month, I became a new member of Grandview’s growing Family Engagement Team as a Peer Navigator in partnership with Durham Region’s Entry to School (ETS) program.

After four years of therapy, self-directed learning and advocating for my son alone, I now get to work beside families who are at the beginning of their child’s autism journey and let them know that whatever they are feeling is valid and that the entire Family Engagement Team is here to support them, through our varied lived experiences.

I hope that through my unique lens, I am able to guide families to the programs and resources that they seek. Most importantly, in my humble opinion, I hope that I can connect them to the warm and welcoming village of Grandview caregivers who supported me during a very hard season of my parenting journey, a season that not many people in my inner circle were part of or understood.

Our kiddos may age out of the agency, but they will forever be a part of the larger autism community, and I genuinely believe the connections I have made through Grandview will last a lifetime and when it feels like the mean outside world is not accepting my son’s autism fast enough or accommodating his needs, I know where I will turn to for support, and I hope you will know too.

Ace has made me a better mother and advocate, but the Grandview caregiver community has made me a better listener and friend.

Sam Keane is a former Grandview Kid’s client and current Grandview Kid’s employee working on the Family Engagement Team as a Peer Navigator. He has Spastic Triplegia Cerebral Palsy and, during his time as a client, accessed many of Grandview Kids’ services, such as physiotherapy and occupational therapy, alongside a variety of social programs and activities. These resources helped Sam achieve many personal goals and accomplishments throughout his journey as he transitioned from adolescence to adult life outside of Grandview Kids.

Sam refills team water bottle in between periods always keeping the athletes hydrated.

His feats include working for the Ontario Tech University’s Women’s Hockey Team, where he achieved his dream of working within the field of hockey as an Equipment Manager. Sam’s duties as an equipment manager include overseeing the hockey team’s everyday operations such as laundry, prepping the dressing room for practice and games, filling the player’s water bottles, sharpening skates, and other duties requested by the team. He is extremely grateful for the coaches, trainers, and hockey team who contribute to the honour and pride that he receives from his job.

Sam went on a life-changing experience to Scotland, learning about the power of determination and self-discovery. Throughout his two-week trip, he went to Edinburgh, Glasgow, Stirling, Dundee and Inverness, staying in multiple hostels while having to figure out the transit system. Many of his friends and family saw the trip as insane, dangerous, and frightening; even Sam had his doubts. “Why would I travel on a plane across the Atlantic Ocean by myself am I crazy? Did I have any idea how difficult that is for anyone, let alone somebody with Cerebral Palsy?” he asked himself. Despite the concerns Sam and his loved ones had, everyone was excited about the journey that he was about to embark on.

Sam meeting his good friend James Neal former Nashville predators forward at the grand opening of the adolescent office at the abilities center after stellar work by the smilezone foundation. (August 25, 2015).

Sam’s trip to Scotland gave him the confidence to venture out again. He recently took a trip to Denver, Colorado, to see his buddy, Ryan Johansen, an NHL hockey player who plays for the Colorado Avalanche. Sam’s friendship with Ryan began at Grandview kids in 2015. Three days before he was scheduled to undergo a major orthopedic operation at Sick Kids Hospital, Grandview Kids’ adolescent office at the Abilities Centre was set to have its grand opening in collaboration with the SmileZone Foundation. Sam had been nominated by Grandview Kids to represent the organization and deliver a speech about his experiences as a Grandview Kids client. At the time, the spokesperson for SmileZone was James Neal, who played for the Nashville Predators and happened to be one of Ryan’s teammates. Sam and James ended up becoming friends, and he eventually got invited through Grandview and SmileZone to a hockey game to see James take on the Toronto Maple Leafs.

Sam receiving physiotherapy as a Grandview kid working on the parallel bars.

Sam would text James before every game to wish him good luck, and his friendship with James led him to connect with Ryan. He would send Ryan gameday texts as well, which eventually developed into a friendship like none other. As Sam reflects on his journey with Grandview Kids and monumental life experiences. “Those two guys gave me a friendship which would change my life, and I could not be more grateful. Thanks for a great time in Denver, bub. For a kid who wasn’t supposed to survive birth and then was never going to walk, with the support from Grandview and phenomenal parents by his side the whole way, I would say he’s done rather remarkable and well on his way to achieving his full potential.”

March is national epilepsy awareness month in Canada, and Grandview Kids hopes to encourage people to acknowledge and understand the disorder and support the fight against the misconceptions, discrimination and isolation facing those who live with epilepsy.

Disclaimer: Jacki is a peer navigator, and her information is not a substitute for professional medical advice.

Jacki’s Story

It’s about one month away from Colton’s first seizure anniversary. To this day, it can still be incomprehensible that my little boy has been having seizures for 12 years. Colton’s first seizure was when he was 8 months old; his second seizure was 2 weeks later, and from there, they never stopped. His seizures are not every day; sometimes they are not every week, but most certainly, by the 2 weeks mark, he has had a few.

Back when Colton’s seizures began, I chased seizure freedom as that was the only goal. I chased it at the cost of anything. The reality is that 30% of individuals with Epilepsy will not have seizure control, and my son is one of them (at least currently, I never lose hope or belief that a treatment will become available in his lifetime). Our family had to learn to live in between the seizures and enjoy any seizure-free day Colton had.

During the past years of parenting a child with a seizure disorder, I have learned a few things:

People mean well; the friend who asks if you have read this article or tried this medication, the mom who says he will outgrow it, the doctor who sends him for more bloodwork. They mean well but they also do not know what is best for your child, you do. You need to educate them on your child, but also learning to understand people do mean well makes this road easier.

With healthcare providers, I found that asking questions and taking time to understand the next steps is essential. Medications for Epilepsy tend to have side effects, so choosing the right treatment plan is important and should not be rushed. Getting a second opinion can be worth it, and so is connecting with other families with similar diagnoses.

Find your tribe – yours and your child’s. Knowing who to reach out to or who you can trust to support your child makes hard days easier. If the doctor or support worker isn’t the right fit, then ask for a referral elsewhere. I have done this; I do not regret it. They may be great, but they are not the right ones for your child. I know who I can reach out to on a hard day, who is going to listen and give what I need. This has come with time, but having the right tribe is helpful.

Finally, it is ok to be sad, stressed, scared or anxious. Those are real feelings, and it is important to feel them. It is natural to think of all the things that can go wrong, but you must also think of all the things that will go right. Write down a list of things that you can do for yourself when you are stressed and having a tough day. Some ideas are getting outside, reading a book, listening to music, ordering a Starbucks drink, and taking a few minutes for some deep breaths. As a parent of a child with seizures, I know there will be bad days, but being prepared with what I can do for myself when feeling depleted helps. It is vital to recognize that taking care of yourself allows you to be there for others.

During the month of March, we celebrate National Cerebral Palsy Awareness Month to recognize and support the many individuals who live with Cerebral Palsy (CP). CP is a permanent physical disability impacting a person’s mobility and muscle strength. The degree of its impact ranges greatly on an individual basis, from mild to severe. Early intervention, therapies, use of Botox and even surgeries can help a person’s ability to deal with pain management and functionality in daily life. CanChild states that approximately 1 out of every 400 individuals in Canada are diagnosed with CP, and it is the most common physical disability in children.

Gavin’s Story – Shooting for the Stars

Gavin and his twin sister are 7 years old and were born six weeks prematurely. As preemies, baby milestones were adjusted to take into consideration their gestational age. His sister was meeting milestones when adjusted to their due date, but Gavin was not. At 18 months of age, his paediatrician referred him to Grandview Kids to see Dr. Hunt. He was diagnosed with spastic cerebral palsy, and Grandview Kids was able to provide his family with support through physiotherapy (PT), occupational therapy (OT), speech-language pathology, recreational therapy, and social work. He had difficulty in using his trunk and legs and holding his head up, and he currently uses a wheelchair for long distances, a walker, and ankle-foot orthotics for support. With continuous PT, he has increased his muscle strength and is now working on coordination and balance. OT helps him work on his fine motor skills through fun activities that develop his colouring, printing, pincer, and feeding skills.

Gavin’s parents recognize the way Grandview Kids has been there to support him and his family over the years. “It’s nice to see people still care. His therapists want him to succeed, so they go above and beyond!” says his dad, who also happens to have CP. “Each therapist brings their own unique ‘quirks,’ and it benefits him and pushes him more. They have great qualities and challenge him.” Gavin was able to take his first steps with his physiotherapist, and it wasn’t just one step, but five amazing first steps.

What does Gavin want to be when he grows up? His parents say that he is not letting CP keep his dreams modest. He is shooting for the stars and wants to be an astronaut. Gavin inspires his parents, who share words of encouragement with other parents of children with CP. “It might hurt in the beginning, but it’s worth it – push them! They come out stronger & smarter. They must think more and expend more energy than the average person, but it pushes their brain capacity. Have that ‘money is no object’ mentality. You will be rewarded, but be patient as it is not an overnight thing; it will take work.”

Stories

Grandview Kids Client Story:

Jacki’s Story

Gavin’s Story – Shooting for the Stars

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