Awareness Days

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

World Cerebral Palsy Day, which occurs annually on October 6, reminds us that there are over 17 million people impacted by this disorder. Many people wear green to celebrate World Cerebral Palsy (CP) Day.

There are more than 17 million people in the world living with CP and it is one of the most common physical disabilities affecting the most vulnerable among us — children. At Grandview Kids, clinicians in developmental pediatrics, occupational, physio, therapeutic recreation and speech-language therapies support children living with CP and work with their families.

Grandview Kids’ parent, Abby V., speaks about his son, Wesley, who has CP:

“Wesley is a thoughtful and engaging social butterfly. He always has a joke or witty phrase on hand and approaches strangers like long-lost friends. He was also born 16 weeks premature and suffered a brain bleed, leading to extensive brain damage shortly after birth. He was diagnosed with both Hydrocephalus and Spastic Diplegia Cerebral Palsy (CP).

Wesley playing with toys at Grandview Kids.

CP is the most common physical disability in children. His form of CP affects both of his lower limbs’ tone, movement and coordination. His muscles are stiff, and his reflexes are spastic. He uses equipment, such as ankle-foot orthotics (AFO’s), as well as a wheelchair and walker for support and mobility.

It is a lifelong disorder, and there is no cure, but there are treatments that help to improve function and quality of life. Wesley has accessed services from Grandview Kids, such as Physiotherapy and Occupational Therapy to improve his fine motor and gross motor skills. They work on things like zipping up his coat and writing with a pencil to transfer between equipment and muscle strengthening. He has come a long way from being unable to crawl as a baby to now using his walker while playing in gym class. His therapists continue to support him through their school-based rehab program to ensure he has the right equipment and provide staff training as needed so that his safety needs and personal goals are met, and he can access the curriculum, just like his classmates.”

Cerebral Palsy and the Six F-words in Childhood Disability

Function, Family, Fitness, Friends, Fun and Future are the six F-words in Childhood Disability developed by Dr. Rosenbaum and Dr. Gorter. They highlight the intersectionality of how the first five factors affect the future of children with CP and encourage clinicians to focus on these factors throughout treatment.

When Grandview Kids families are participating in the CP-NET study, they are smiling, laughing and passionate when speaking to me about their child’s interests and abilities. As the Research Assistant connecting with these families, I’ve learned so much about CP by listening to their insightful lived experiences. Let’s join the world by wearing green on Friday, October 6, 2023, and learning more to celebrate people living with CP!

Written by Grandview Kids Speech Language Therapy Assistant (SLTA), Nicole N.

On September 23, we recognize and continue to raise awareness of the use of sign languages around the world, the importance of protecting the linguistics surrounding it, and respect for deaf individuals and their culture. Today there are over 300 different sign languages used globally within the Deaf communities. For this, we celebrate ‘The International Day of Sign Languages.’

Nicole N., pointing to her white t-shirt which has the alphabet in American Sign Language (ASL). — Nicole N., pointing to her white t-shirt which has the alphabet in ASL.

This day is not only significant to deaf individuals but also to those who are allies in the Deaf community. Here at Grandview Kids, I take great pride in being an ally by educating others about the Deaf community, being an advocate for equality of language rights and sharing my knowledge of using American Sign Language (ASL). In 2019, I graduated from George Brown College with the American Sign Language and Deaf Studies Program, which taught about past and current social issues the Deaf community faces, how to communicate through ASL, and provided practical opportunities to connect Deaf individuals within the surrounding community.

In my role as a Speech Language Therapy Assistant at Grandview Kids, I am able to share my ASL skills and experiences with clients, families and colleagues working in the Infant Hearing Program (IHP) and Preschool Speech and Language Program (PSL). This unique language allows for inclusive learning and can include a total communication approach, meaning finding communication methods that work for each individual, which can include ASL signs.

Nicole N., signing the word MORE in ASL.

Nicole N., signing the word COW in ASL. — Nicole N., signing the word MORE in ASL.

Within a session, I can connect with caregivers, families and clients to provide and model specific ASL signs/words to support clients’ communication for requesting, commenting and protesting, as well as provide a language-rich environment that can transfer outside of the sessions to daily opportunities. Supporting clients’ independence and confidence to communicate through ASL, watching vocabulary grow and develop from sign approximations to 1-word signs and move into 2+ word signing combinations is something I am grateful to watch and experience.

ASL will continue to be an ongoing learning journey for me as I grow personally and professionally, which I am proud to share within Grandview Kids!

Written by Grandview Kids Summer Marketing Assistant, Ayanna S.

September serves as National Sickle Cell Awareness Month in the United States of America. Sickle Cell Awareness Month aims to raise awareness and support research about the disease, and although it’s not officially recognized here in Canada, many sickle cell advocacy groups celebrate the month regardless. Sickle cell affects the oxygen-carrying protein hemoglobin, which is found in red blood cells. This results in stiff, sickled red blood cells that have difficulty flowing through blood vessels.

When my parents were told I had sickle cell disease when I was just six months old, they probably couldn’t predict the profound impact the inherited blood disorder would have on my life. Sickle cell can result in a wide variety of health problems, including anemia, fatigue, swelling in the hands and feet, and attacks of pain called “sickle cell crisis.” Those with sickle cell are also more vulnerable to strokes, bacterial infections, and organ damage due to lack of blood flow.

From a very early age, I took steps to mitigate the impact of sickle cell disease. I always drank plenty of water, ate healthy, and avoided extremely cold environments that might trigger a pain crisis. Like many other people with sickle cell, I depended on medications such as folic acid, antibiotics, and hydroxyurea to keep my hemoglobin levels high and boost my immune system. Throughout my childhood, I received care from the dedicated red blood cell clinic at the Hospital for Sick Children in Toronto. It was there that I encountered children who also had sickle cell for the first time. I realized some of these children had more severe cases of sickle cell and required more medical intervention such as blood transfusions, surgery, and frequent long hospital stays away from home.

When my sister Rhea, who is nine years younger than me, was young, she also had more sickle-cell-related complications than I did. As a result, she underwent monthly blood transfusions, frequent trips to the hospital, and even surgery to remove her spleen when she was just two years old. My sister, now fifteen, lives a life relatively free from sickle cell complications due to the care she receives at SickKids, but I still remember the impact sickle cell had on her when she was younger. Many children with sickle cell miss important days, milestones, or opportunities due to sickle cell complications. Weeks spent at the hospital are weeks without friends, school, or extracurricular activities. It can be a very isolating experience, and I often struggled to explain the full impact of sickle cell to my friends and teachers. To many of my peers, I simply didn’t “look” sick or like someone who would need health accommodations. Education about sickle cell disease is limited, and many people are ignorant about the disease.

This is why it’s important to support sickle cell awareness and social support for those with sickle cell disease. Because sickle cell mainly impacts people who are of African, Caribbean, Middle Eastern, Mediterranean, and Indian descent, we also face challenges like discrimination and medical racism that hurt our ability to receive proper care. Groups such as the Sickle Cell Awareness Group of Ontario and Camp Jumoke help fight the stigma against sickle cell and boost opportunities for Ontarians with sickle cell.

Today, I am twenty-three years old and living a happy and healthy life with sickle cell disease. I still sometimes suffer from complications and pain, but I have been helped greatly by the hematology experts at SickKids and Toronto General Hospitals. They are dedicated to helping sickle cell patients live full and healthy lives. Proper support and care make a world of difference for those living with a disability. Happy Sickle Cell Awareness Month!

July is Cleft and Craniofacial Awareness Month, which focuses on raising awareness about cleft lip and palate. Cleft lip is a condition characterized by an opening in the upper lip. It occurs as early as the first three months of pregnancy and can cause problems with speech, hearing and social development. Grandview Kid Charlie was born with a cleft lip and underwent a successful cleft palate repair surgery early in life, his story allows us to learn more about cleft lip and how it is treated.

A smiling Charlie with his parents and sister.

The Discovery

It was my second pregnancy and my husband and I went to the standard 18-week ultrasound. The technician said she would be right back with the doctor. I didn’t think anything of it, but my husband was worried. We were informed that Charlie would be born with a cleft lip and palate. I just stared at the doctor for a bit. I knew what that was but couldn’t process it. I just said, “Okay… so what do we do?” The doctor explained that I would need to do some further blood work, a possible amnio, speak with a geneticist, see a fetal cardiologist and set us up with the Cleft Lip and Palate Clinic at SickKids. It was all so overwhelming and it didn’t hit me until I got back to work, which was probably a mistake after receiving news like that. I had to call my husband and I could not stop crying. It was all so devastating for both of us, but all I could think about was how much I already loved our son. I did all the tests, saw all the specialists and we prepared like crazy for this condition before our little boy arrived.

Baby Charlie wearing an off-white knitted sweater. Charlie was born with cleft lip and palate.

The Journey

When Charlie was born I was so happy to finally meet him! Seeing his cleft lip did not phase me at all. He was my sweet, beautiful baby boy. He needed to be fed with a SpecialNeeds Feeder by Medela, which provides help to cleft palate babies who cannot create a vacuum to drink. We had training on how to use that with the help of the wonderful NICU nurses at the hospital in Oshawa. After nine days in the NICU, he was ready to go home. It was my birthday – best birthday present ever! Once we were settled at home, the countless appointments at SickKids began. The amazing team from the Cleft Lip and Palate Clinic consisted of Plastics, ENT, Orthodontics and Speech. Orthodontics plays a HUGE role in helping cleft babies before surgery! They made Charlie a Nasoalveolar molding (NAM), which is a pre-surgical, custom-made orthopedic appliance that essentially brings together the two sides of a cleft lip or palate close together. The NAM caused Charlie pain as he barely slept for 9 months. Once his cleft lip was repaired, he was pain free and we hired a sleep doula to help him sleep through the night. We highly recommend a sleep doula for babies who won’t sleep!

A baby Charlie in a car seat wearing a white hat.

The cleft palate repair was more invasive. Charlie was in a lot of pain post-surgery. For recovery he needed to eat soft foods for 6 weeks, as well as wear pediatric arm restraints to prevent him from putting his hands in his mouth. Charlie also recently had surgery for a cleft palate extension called a pharyngeal flap. This flap creates a bridge at the back of the throat to help the velopharyngeal valve close and prevent air from leaking through the nose when talking. His recovery from that was awful and painful, but he prevailed. Since these surgeries, Charlie has had speech therapy with Grandview, Holland Bloorview and with a private SLP. He works hard every week to improve his speech and has really learned to enunciate each word slowly.

Along with a cleft lip and palate condition comes ear infections. Charlie has had multiple surgeries to insert ear tubes due to ear infections and bouts of hearing loss. Charlie currently has a retracted ear drum. SickKids is hoping it will heal on his own with the warmer summer weather.

Charlie’s journey is far from over. He will still need different types of surgeries to improve his cleft lip and palate condition, up until he is in his 20s. Luckily we have lots of support from SickKids, SLPs, Charlie’s school and from family and friends!

The Awesome Charlie

Charlie loves to swim, especially at our cottage! Charlie loves to play soccer, baseball and Nintendo. He loves to dance and sing. He loves safari animals and is obsessed with lions. He is also quite the thrill seeker as he loves to ride roller coasters! He is a happy, energetic and creative kid. When he is not building forts or having battles with his toys, he likes to goof off with his older sister, Samantha. His laugh is infectious! Charlie is turning 7 in a few months and already decided that he will be having a Super Mario Bros. themed birthday.

Charlie had a beautiful smile with his cleft lip and still does post repair. We love him so much and are so proud of this brave young boy!

A photograph of Charlie wearing a white button-up shirt and a bow-tie.

June is National Migraine & Headache Awareness Month (MHAM). Today aims to raise awareness, eliminate stigma, and strengthen community bonding for those within the headache, migraine, and cluster communities. For 2023, MHAM’s theme is Educate Yourself, Educate Others. Here is some general information and resources about headaches and migraines and their impact on the headache community.

The word “headache” is a broad term used to describe pain in the scalp, head and neck. There are many different types of headaches. They may be primary conditions such as tension headaches, migraines, and cluster headaches, or they may occur due to underlying health conditions. Tension headaches are caused by tense muscles around the head and neck, often due to stress, anxiety or depression and typically feels like dull pressure around the head. Tension headaches may also be triggered by alcohol, too much caffeine or caffeine withdrawal, dental problems such as frequently grinding your teeth or clenching your jaw, eyestrain, keeping your head in one position for a long time or not getting enough sleep.

A picture of a woman experiencing a headache and massaging her temples. — The word headache describes pain in the scalp, head and neck.

The exact cause for cluster headaches isn’t known and, unlike tension headaches, they’re not associated with many triggers. These types of headaches are characterized by sudden, recurring attacks known as cluster periods, which can last from days to months and are followed by a remission period when the headaches stop. A cluster headache consists of extremely severe pain situated in or around one eye that can spread to the rest of the face, head, and neck.

A migraine headache is a neurological condition characterized by recurrent episodes of moderate to severe head pain, often accompanied by additional symptoms such as nausea, vomiting, sensitivity to light, sensitivity to sound, and sensitivity to smells. Some individuals may also experience them due to visual disturbances, such as flashing lights or blind spots, known as an aura. Migraines can be disabling and can have a significant impact on a person’s daily life, causing them to miss work, social activities, and experience reduced productivity and overall well-being. These headache episodes can last for hours or even days. Migraine pain is usually described as throbbing or pulsating and is often felt on one side of the head, however, it can also affect both sides. Although migraine affects three times more women than men, it can be equally disabling in both genders. Migraine often starts at puberty and mostly affects adults in their productive years, but it can also be present in children and the elderly.

For more information, visit:

Awareness Days

Cerebral Palsy and the Six F-words in Childhood Disability

The Discovery

The Journey

The Awesome Charlie

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