Awareness Days

In 1992, The United Nations General Assembly proclaimed December 3 as International Day for People with Disabilities. This annual day of observance aims to promote an understanding of disability issues and to mobilize support for the dignity, rights, and well-being of people with disabilities and celebrate their achievements.

27-year-old Amanda is a Grandview Kids Grad with a disability of left-side hemiparesis cerebral palsy, which affects her left arm and leg. Amanda has been a part of Grandview Kids since the age of six-months-old. At Grandview Kids, she received Physiotherapy to help with strengthening her leg muscles, Occupational Therapy to work on fine motor skills, Speech-Language Pathology to build on communication clarity and efficacy, and Botox injections to help reduce spasms in her muscles.

Amanda is a major advocate for people with disabilities. She has shown time and time again how her disability does not limit her. A notable moment of personal achievement was when she made a goal to learn how to drive and successfully earned her driver’s license. She is also always encouraging the growth of other Grandview Kids peers. As an adolescent, she was a founding member of Grandview Kids’ Youth Advisory Council (YAC) to give voice to the unique challenges of disabled youth.

Since embarking on her own journey outside of Grandview Kids, she began a role at the Abilities Centre as a Mixed Ability Sports Facilitator and Ambassador. Her role focuses on making sports/sports clubs accessible and inclusive. She participates in coaching clinics to teach others how to run a mixed-ability sports program. She also provides ambassador training by going to schools to teach students and/or athletes how mixed-ability sports can be successful. “It makes me so happy to see others like me joining sports like everyone else, being on the same team whether you’re disabled or not.”

More recently, Amanda was part of the Steering Committee to build the Grandview Kids Adolescent Transition Program. Her lived experience was an essential asset to the Steering Committee by providing vital insight into the gap in service support and resources between adolescence and adulthood for those with disabilities. With her help, the Adolescent Transition Program Toolkit was built and serves as a roadmap for youth and their caregivers. The program launch has been well-received, and her efforts led her to become the 2023 “Spirit of Grandview Kids Award” grad winner of the Elexicon Energy Dream Big, Dream Brighter Awards dinner.

Thank you, Amanda, for being a true advocate for people with disabilities during your time as a Grandview Kids client and even now as a grad! Your work and achievements are inspiring!

On National Child Day, we recognize Canada’s commitment to uphold the rights of children. This year’s theme is “Inclusion for Every Child,” which includes children and youth with physical, communication and developmental needs. Jacki N., a Peer Navigator on the Family Engagement Team, has four children (one being a Grandview Kids client) and talks about how “Inclusion for Every Child” is in their home.

“Everything can be inclusive; we just need to make it.

I have four children; they are completely different from each other, yet the same. They all want food (summers are filled with snack requests), need water, get overtired without enough sleep, love to have fun and make multiple messes while doing so and need LOVE. I believe each of them is living their best childhood, and I hope one day, when they reflect on it, they will think the same.

Our second son was born with a rare seizure disorder called Dravet Syndrome, and his life is very different because of it. Eating for him involves following his strict Ketogenic diet (no carbs, no sweets and high in fat), water must be Fiji water (causes fewer seizures for him), and sleep is important so he doesn’t become overtired and have seizures. Some days are filled with seizures and are not fun for him or any of us. On those days, we all make sure we spend time with Colton, giving him love. Love is hugs and reading story books, and it is his siblings trying to make him smile and putting a favourite show on his iPad. Love is me sleeping beside him on the floor so he is not scared or his Dad playing his favourite songs on the guitar. 

All children have the same basic wants and rights. They all deserve love and community, EVEN though it may look different. Parenting a child with high needs has truly taught me how creativity and want can make everything inclusive. Children are often the most creative beings. Let’s start by asking them how they would ensure everyone is included. By teaching and showing our children how this can be done, we are making the world more inclusive for generations to come. It is not how we eat, the water we drink or the child’s definition of fun that is important. What is most important is showing them love, and we do this by simply making them smile.”

Diwali, also known as Deepavali, is a festival of lights celebrated by many people all around the world. Based on the Hindu lunar calendar, Diwali will be celebrated on November 12 this year. Diwali is a joyous occasion when we come together to celebrate the triumph of light over darkness, good over evil, and knowledge over ignorance. Diwali is observed differently by Hindus, Jains, Sikhs, and Buddhists, creating diverse traditions.

Suvaathy V., a #TeamGrandview Staff writes:

“In my Hindu family, we prepare for Diwali by decluttering, dusting, and decorating the house with vibrant rangoli designs, oil lamps, and colourful lights to symbolize the removal of negativity and the welcoming of positive energy.

During Diwali, we visit our local temple, offer prayers, and seek blessings for prosperity. We light small oil lamps called diyas at home as they represent the illumination of the inner self. We sing songs and tell stories about why Diwali is such a special and happy time for us.

Diwali is incomplete without its delicious treats. We make and eat lots of traditional sweets such as laddoos and savoury snacks like samosas and murukku. As the sun sets, we light many candles and lamps, and sometimes, we even have fireworks and sparklers that light up the sky.

As Diwali ends, we feel grateful for the time spent with our loved ones. It is not just about the lights and the fun; it is about being together and showing love and kindness to everyone. Diwali teaches us that no matter how tough things might seem, the light of love and happiness will always shine through.”

On October 25, World Spina Bifida and Hydrocephalus Day raises awareness and understanding for these diseases that affect the spine and the brain. It’s also a day to advocate and promote the rights of those living with these conditions.

Client Story:

“Wesley is seven years old but was born 16 weeks premature and suffered a traumatic brain injury (TBI) shortly after birth. While in the Neonatal Intensive Care Unit, he was diagnosed with Hydrocephalus when he was only a few weeks old.

Hydrocephalus is a chronic condition in which there is a buildup of excess cerebrospinal fluid (CSF) in the brain’s ventricles. CSF normally circulates throughout the brain and spinal column, but it can become blocked and pool in the ventricles, causing them to widen and put harmful pressure on the brain’s tissues. Causes of Hydrocephalus include head injuries, brain tumours, genetic inheritance, or may be associated with developmental disorders like spina bifida. Signs and symptoms are usually a bulging fontanelle and setting sun eyes (in infants), unusually large head size, lethargy, vomiting, and complaints of headaches. Cognitive displays of hydrocephalus can also present themselves through changes in personality, slowing or loss of developmental progress, impaired cognitive skills, and memory loss.

There is no cure for Hydrocephalus, but there are several ways to treat it. Spinal taps, implanting an Ommaya Reservoir, and, most commonly, implanting a device known as a shunt are ways to help circulate the excess CSF normally throughout the body.

Wesley began presenting symptoms of Hydrocephalus a few weeks after birth. He has had spinal taps, an Ommaya Reservoir, and several shunt revisions since his diagnosis. Today, he has had a total of 7 brain surgeries related to his Hydrocephalus. As a lifelong illness, he must be followed long-term by his neurosurgeon. A shunt can go from working for 18 years to suddenly malfunctioning. The shunt valve can become clogged, or the pressure in the shunt may be too little or too much for the individual. The success of shunt revisions is unpredictable, but immediate treatment encourages a positive outcome.

As parents, we are constantly on the lookout for signs of shunt malfunction or failure and must also provide this information to his caregivers and schoolteachers. Wesley is also learning to advocate for his needs and being able to identify his own signs of shunt malfunction or failure.”

October 22 is International Stuttering Awareness Day (ISAD), which was founded in 1998. This day is intended to raise public awareness of stuttering, which affects one percent of the world’s population. Stuttering, or stammering, is a communication disorder in which the flow of speech is broken by repetitions or abnormal stoppages of sounds and syllables.

At Grandview Kids, our team of speech-language pathologists work hard to give children and youth the skills they need to overcome their stuttering and equip them with the tools to communicate effectively. 

Client Story:

“Henry has always been a silly kid, one who will do anything to make us smile by singing songs, telling us silly stories and asking us questions. He was also always a perfectionist who, from an early age, would enjoy arranging his toy cars into neat lines. Currently, Henry loves numbers, Lego, and astronomy, which suit his personality well. 

We noticed as Henry’s language developed that, he would have periods of time where he had difficulty getting his words out. However, these periods would pass, and his speech would return to normal. Once Henry started Junior Kindergarten, we noticed his speech becoming strained and difficult for a prolonged period of time. Henry became more hesitant to speak.

When we would ask him about his day, he would just say he didn’t remember. He would avoid complex sentences and, at times, avoid speaking altogether. It was heartbreaking to us that our little silly boy was losing his will to speak. We sought help from his family doctor as well as his teachers. His teachers were able to refer us to a private speech pathologist, Stacey Carroll, at Connect 2 Communicate. Stacey was immediately so helpful, welcoming, and reassuring to us that we could help Henry. She assessed that Henry had a stutter and immediately helped connect us with Grandview Kids. 

The service we have received from Rikki, the speech-language pathologist at Grandview Kids, has been remarkable. We feel like she has returned our son to us. Rikki has been fantastic at explaining how stuttering happens and the steps to alleviate the stutter. The strategies we were taught by Rikki have been so effective at returning Henry’s speech to a more fluent form that his confidence has also returned. We cannot thank Rikki and Grandview Kids enough for what they have done for our family.”