Awareness Days

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.”

On March 21, we celebrate World Down Syndrome Day by showcasing the abilities, contributions, and experiences of people with Down syndrome. It also aims to educate, raise public awareness and advocate for acceptance and inclusion.

Down syndrome is a naturally occurring chromosomal arrangement that has always existed and is universal across racial, gender, and socio-economic lines. One in every 781 babies born in Canada has Down syndrome.

The goal is to make the world a more inclusive place for individuals with Down syndrome, and we can start by using appropriate language when referring to any group of people. Correct terminology helps to reduce the chances of prejudice, misconceptions, and stereotypes. The Canadian Down Syndrome Society has a helpful guide for talking about Down Syndrome.

Client Story:

Meet 5-year-old Clara! She enjoys listening to music, working with puzzles, building things and is a skilled reader. Clara also has Down Syndrome, but her diagnosis does not define her. In fact, with extra care and understanding, she will show you how smart and determined she can be!

Depending on the task, she can do and accomplish many things quite well and independently. She requires help in some areas, but given the time to work with her, “Clara can do great things in her own way, on her own time,” says Clara’s mom, Tanya.

Tanya (mom) is holding Clara (client) in her lap.

Clara accesses Grandview Kids services such as Speech-Language Pathology, Physiotherapy, Occupational Therapy and Social Work support. She has been working on improving her social skills and communication skills. Clara and Tanya’s Grandview Kids experience has been “absolutely positive all around,” and “Grandview Kids is a great place to start to figure out the journey.”

They made lots of connections with different services and teams that helped Clara move forward. Tanya knows that she can approach Grandview Kids and say, “This is where we’re at, and I need the help, and the help is always there.” This is why she “wholeheartedly and will always be a champion for Grandview Kids.”

Join us and others to take a stand against bullying and be an advocate for kindness and inclusivity by wearing a pink shirt on February 28, 2024.

Pink Shirt Day is celebrated on the last Wednesday in February every year to promote anti-bullying. The initiative was started in 2007 in small-town Nova Scotia, after a Grade 9 boy was bullied for wearing a pink shirt. Other students took a stand against this bullying, distributing pink shirts to all Grade 9 boys in an act of solidarity. This simple act of kindness spread across the school, community and country, becoming a global movement to support children and youth affected by bullying.

Bullying is a form of aggression where there is a power imbalance; it is behaviour that makes the person being bullied feel afraid, alone or uncomfortable. This can include such behaviours as being teased, insulted or excluded. There are many different types of bullying, ranging from being made fun of, to having one’s property destroyed, to cyberbullying-type measures such as having hurtful information posted on the Internet.

Having needs due to neurological, developmental, physical and mental health conditions can add to the challenges children and young people face as they learn to navigate social situations in school and in life. While bullying and cyberbullying is an unfortunate reality for many young people, children with physical, communication and developmental needs are at greater risk for being targeted by their peers.

That’s why Pink Shirt Day is so important to Grandview Kids!

We all have a role to play in making the community accessible and inclusive for all abilities. Becoming an Inclusion Ally is one way you can make a difference!

An Inclusion Ally is someone who listens to and supports people with different needs and abilities, but does not have this lived experience. It’s not a label you give yourself. An Inclusion Ally is always learning and unlearning. An Inclusion Ally finds a way to make sure everyone feels like they belong.

Don’t know where to start to combat bullying? We can help!

Our Ability Acceptance Program is available to local businesses, schools, licensed child care centres and community groups, with the goal to enhance the understanding and acceptance of all abilities and promote inclusive practices. Request a presentation!

Remember, sometimes disabilities are visible, but other times they may be invisible. This includes brain injuries, chronic pain, mental illness, gastro-intestinal disorders, and much more. Because they’re not obvious to spot, invisible disabilities may be overlooked and misunderstood. That’s why it’s important to treat everyone with respect, kindness and understanding.

Together, we can make our classrooms, schools and communities more inclusive for people of all abilities!

Written by IDEA committee member and Grandview Kids parent, Abby V.

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.

Zoe’s Story

Like many people, Sarah-Lynne and Erik followed the traditional route of starting a family. They got married, bought a house, and decided that they were ready to start adding children to their family. They were surprised with identical twin boys in 2016, and always wanting a large family tried for a third child. Zoe was born in October 2018 and perfectly completed their family, but life as they knew it would not be deemed “typical” again.

Zoe was discharged from the hospital as a healthy baby, only to be readmitted twice for jaundice and weight loss. On the family’s second emergency visit, she was admitted to the NICU for feeding and weight loss support. Suddenly and without explanation, Zoe went into distress. She had a perforated bowel and was in emergency surgery within hours of being transported by ambulance to Sick Kids Hospital. She was declared septic with the possibility of meningitis. For the next nine months, her parents would not have any answers as to what was causing Zoe’s illness. After fiercely advocating for their daughter and conducting tests that are not offered in Canada, Zoe was finally diagnosed with a rare Congenital Disorder of Glycosylation (CDG), SLC35A2-CDG.

Zoe is the 49^th person in the world to have this strain of CDG. She is now five-years-old, and her diagnosis continues to affect her daily living. She has severe global developmental delay, muscular hypotonia, Epilepsy, Cortical Visual Impairment (CVI), cervical spine instability, risk of spinal cord compression, obstructive sleep apnea, GERD, and scoliosis, and is G-tube fed. Her disease requires round-the-clock care and medications to keep her healthy and comfortable as everything, including her sleep, independence, mobility and communication, is affected.

Mom, Sarah-Lynne, holding Grandview Kids’ client, Zoe, on her lap. Thay are surrounded by their family.

At Grandview Kids, Zoe receives Occupational Therapy, Physiotherapy, Speech-Language Pathology, and Recreational Therapy and attends Grandview School. Early intervention before the age of six is a necessity as this is the time most brain development occurs. Zoe’s parents continually fundraise for her private therapies and medications but also give back a portion to organizations that have made a direct impact on Zoe’s life. “Sky is the limit. We can’t put an amount on her quality of life, especially if more therapy now means this might change the whole trajectory of her life,” says her mom.

Living with a rare disease means every day is a rollercoaster journey of emotions, but Sarah-Lynne has learned that “grief and joy can coexist.” A balance must be found to be able to enjoy the joyous moments but allow the reality that the life you expected is not what it is. You can grieve the life you wanted for your child and your family, but you can also see through a new lens of compassion, kindness, strength and resiliency. Zoe’s diagnosis is the “hardest but most rewarding thing I will ever experience. I am a better person because of it, and so is everyone else around Zoe.”

Congenital Heart Defect (CHD) Awareness Week is held every year from February 7 to 14. According to the Centre for Disease Control and Prevention, CHDs are the leading birth defects that cause death in infants and adults. Approximately 1% of births per year are affected by CHDs, which exist from birth and often affect the structure and shape of a baby’s heart. Since the condition is so prominent and is a leading cause of death in children, it is very important to make medical professionals, researchers, families, and the general public more aware of the condition.

Matthew Has Heart

Matthew is a social 15-year-old teenager who likes to observe the world around him and to watch and play basketball. When his mom, Melodie, was only 17 weeks pregnant, she received the news that Matthew would be born with Down Syndrome. A few weeks later, a specialized ultrasound also confirmed a CHD called Atrioventricular Septal Defect (AVSD). This meant he had a large hole in the centre of his heart, and the valves meant to control the blood flow between the heart chambers might not be formed correctly. This early diagnosis gave his family the opportunity to educate themselves and meet with many specialized doctors before being thrown into the situation.

Baby Matthew in the NICU with his mom, Melodie, watching over him.

Matthew was born two weeks earlier than expected, thwarting medical plans, but was fortunate enough not to need immediate surgery. He spent a few weeks in the NICU and, at fix months of age, had his open-heart surgery. “That day was one of the hardest days of my life,” recalls Melodie. “I handed over my five-month-old baby boy to a nurse at Sick Kids Hospital, not knowing if I would get to see his beautiful little face again! Five and a half hours later, we received the news that the surgery was a success! The eight days that followed had some terrifying moments, but in the end, we brought home a healthy baby boy that is now 15-years-old and the centre of our universe!”

When asked what advice Melodie would give to families with a new diagnosis, she said, “Make sure to ask questions and don’t be afraid to tell their doctors if you aren’t clear on what they are saying. Our cardiologist drew us pictures, and I remember we took those photos and had dinner with family afterwards at a restaurant, where we used those photos to explain it to the grandparents. We made sure to educate ourselves as much as we could. We reached out to other families who had been where we were, and it helped so much. Just knowing you aren’t alone means so much. This is where Grandview Kids excels, and although we weren’t a part of Grandview Kids at this exact time, it paved the way for us to be so greatly involved with Grandview Kids as we knew the importance of helping other families just as we were helped.”

15-year-old Matthew holding a basketball.

Melodie and her family continue to be strong advocates for Matthew. They are helping others walk the same journey through family engagement and the power of storytelling. “Matthew has one of the biggest hearts I know,” says Melodie. “It may not be a perfect heart, but it’s a strong and loving heart. He is sweet, caring and sensitive. He loves people, and people love him. They see his perseverance, his courage, and his strength. We have Grandview Kids to thank for helping us tell our story many times and inspiring people.”