Awareness Days

Spina Bifida Awareness Month is nationally observed in June. Spina Bifida is the most common congenital birth defect that causes disability. It is a condition that occurs when the spine and spinal cord do not form properly. Many babies born with Spina Bifida will also have or develop hydrocephalus, requiring a shunt to remove excess fluid from the brain. Although there is no cure, there are surgeries to help living and growing with Spina Bifida, and in-utero surgery designed to treat it if detected early enough.

Families like Weston’s share their stories to continue to raise awareness of living with Spina Bifida:

Weston is 13 years old and enjoys playing with Lego, reading Diary of a Wimpy Kid books and being a comedic teen. He loves to affectionately surprise his mom, Krystal, with a kiss on her cheek or hand, have pillow battles with his dad, Ganon, and play with his brother, Jase.

Weston was also born with Spina Bifida, having a hole in his lower back with his spinal cord sticking out. This was corrected through surgery shortly after birth. After further genetic testing prompted by having multiple anomalies, including a heart defect and eye issues, and not meeting many developmental milestones, he was officially diagnosed with Rubinstein Taybi Syndrome 2 (RTS2) in 2020. RTS2 is a rare genetic disorder, and in Weston’s case, caused by a partial gene deletion. He was later diagnosed with autism spectrum disorder (ASD) this past year.

Since Weston looks like a typical kid, it can be challenging for people to fully understand, respect his boundaries or forgive his lack of a filter due to his diagnosis. Grandview Kids has been a part of Weston and his family’s lives since he was a baby.

“Grandview will always hold a special place in our hearts. Weston feels right at home when he walks through the main site doors. He feels safe and comfortable there. The staff are always the sweetest with him too. Our family also feels the love of all the staff. Grandview has been one of our biggest support systems for the last 12 years,” says Krystal.

Weston has received services for physiotherapy (PT), recreational and occupational (OT) therapy, speech-language pathology, social work, hearing, eye and medical clinics, and a bike clinic. He also attended Grandview School for junior and senior kindergarten. Weston does not require the use of any assistive devices. In more recent years, his family has benefited from the Family Engagement Team’s inclusive events where whole-family care is at the forefront.

As a child with Spina Bifida, Weston also visits Holland Bloorview Kids Rehabilitation Hospital a few times a year to visit the Spina Bifida Clinic. In a single day, he may see multiple specialists, including a pediatrician, OT, PT, Urologist, ultrasound, social worker, and orthopedist.

As a parent of a child with physical, communication and developmental needs, it is sometimes difficult to track progress, especially when measured against peers. When Krystal thinks back on how far Weston has truly come, it is a marvel to wonder at. “He went from zero words to talking sentences while attending Grandview School and receiving weekly therapy and continued support from special education teachers,” says Krystal. “He still walks robotically, and his reflexes will always be an issue, but he is getting better. Weston has some physical barriers that he may never overcome just because of his body makeup. But, continuing to receive blocks of therapy and support from Grandview helps.”

In May, we acknowledge Mental Health Awareness Month, Asian Heritage Month, Neurofibromatosis Awareness Month, Food Allergy Awareness Month, Vision Health Month, National Child and Youth Mental Health Day, GBA (Gender Bias Analysis) Plus Awareness Week, World Lupus Day, Apraxia Awareness Day, International Day Against Homophobia, Transphobia & Biphobia, and Global Accessibility Awareness Day. Read more about each date of significance below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

Mental Health Awareness Month

May is Mental Health Awareness Month, and Mental Health Week is from May 6 to 12. Since 1951, the Canadian Mental Health Association (CMHA) has observed a week in May to continue building awareness and providing education about mental health within our communities.

For 2024, CMHA is focusing on kindness and compassion. Powerful tools to help ourselves and others connect and heal. Compassion is defined as an emotional response to the struggles of others combined with a real, authentic desire to help lessen their suffering*. While being kind and compassionate to others is healing to both those we emotionally want to support, there is also great benefit in self-compassion. The practice of self-compassion – CMHA-MHW2024.pdf

Benefits of kindness and compassion:

It increases our “feel good” hormone, oxytocin.
It is contagious; if we see others showing compassion or kindness, we are encouraged to do the same, and that helps us have a more positive outlook.
It can also have a positive impact on our mood and help lift feelings of depression**.

Asian Heritage Month

May is Asian Heritage Month in Canada, recognizing the rich cultural tapestry and significant contributions of Asian communities to the nation’s history and development. This month serves as an opportunity to delve into the diverse heritage of Asian Canadians, spanning from their historical struggles against discrimination to their contemporary achievements across various spheres of society, such as arts, sports and social justice.

With the 2024 theme of “Preserving the Past, Embracing the Future: Amplifying Asian Canadian Legacy,” the focus extends beyond commemoration to embracing optimism and acknowledging the ongoing journey towards inclusivity and equality. Through celebrating traditional and contemporary cultural expressions and understanding the historical struggles and triumphs of Asian Canadians, Asian Heritage Month invites Canadians to reflect on their integral role in shaping the fabric of Canadian society.

Neurofibromatosis Awareness Month

May is Neurofibromatosis Awareness Month, and May 17 is Neurofibromatosis Awareness Day. Our Peer Navigator, Fadia O., wanted to pay tribute to her friend’s son Hamza by sharing his story. He has been battling Neurofibromatosis type 1 (NF1) since birth, and I want to bring awareness to this condition, which profoundly impacts him and his family and those who have this rare disorder. NF1 is a neurological and genetic disorder which appears as light brown café au lait spots, freckles in the armpits or groin, tiny eye iris bumps, and soft skin or underskin tumours. While these tumours are generally benign, NF1 can also cause abnormal bone growth, leading to conditions like scoliosis or bowlegs, as well as optic nerve tumours. Children with NF1 often experience unique learning challenges, and may have a larger head size and shorter stature compared to their peers.

Witnessing Hamza’s journey, who has nerve tumours, bone anomalies, declining health and now a dependency on breathing machines for the past four months, has deeply moved me. Surrounded by his worried yet hopeful family, he shows immense bravery. NF1 can lead to complications such as hearing loss, cognitive difficulties, cardiovascular issues, vision impairment, and intense pain, all of which this courageous young man is enduring.

This story is shared not only to raise awareness but also to honour the hope and spirit of Hamza, his family, and the many others living with NF1. It highlights the urgent need for advanced research, comprehensive understanding, and robust support systems for those navigating the complexities of this condition. Amidst these struggles, hope keeps them driven toward finding a future where scientific breakthroughs and new possibilities await every family, including Hamza’s.

Food Allergy Awareness Month

May is Food Allergy Awareness Month, and this is an issue that impacts nearly one in two Canadian households. Food allergy is one of the leading causes of potentially life-threatening anaphylactic reactions and a public health concern in Canada, especially among children.

Over 3 million Canadians are affected by food allergies; that’s 7.5% of the population. The impact of food allergy is far greater, with an estimated 50% of households being either directly or indirectly affected by food allergy. As there is no way of predicting how severe an allergic reaction may be and no known cure for food allergy, avoiding allergenic food is required to prevent a reaction.

Vision Health Month

Vision Health Month is an invaluable opportunity to raise awareness about the importance of eye health and vision care. Throughout this month, professionals aim to educate individuals about the significance of regular eye exams, early detection of eye conditions, and the adoption of healthy habits to preserve vision. With millions of people worldwide affected by preventable vision impairment, Vision Health Month serves as a crucial reminder to prioritize our eye health and take proactive steps to safeguard our vision for a lifetime of clarity and well-being.

1 in 7 Canadians develop serious eye disease in their lifetime, and the Canadian Association of Optometrists advocates that 75% of vision loss is preventable or treatable with proper care. Through advocacy, outreach, and community engagement, Vision Health Month strives to empower individuals to make informed choices about their eye health and inspire action toward a world where everyone has access to quality eye care.

May 7: National Child and Youth Mental Health Day

The purpose of National Child and Youth Mental Health Day is to foster connections between young people and the adults in their lives who care about them. Caring, connected and supportive conversations can have a big positive impact on mental health and the well-being of children.

There is no greater cause than helping a child and saving them from suffering alone. This can protect them from living with any long-lasting crippling mental conditions. A mental health check is important for everyone, not just children. Some conditions can ruin the quality of life if not treated early. Have meaningful conversations with the youth in your life surrounding ways to support their mental health better and create an open and honest dialogue. By celebrating this day, we are effectively raising awareness to make more people undergo treatment. The general support for children will also increase.

May 6-10: GBA (Gender Bias Analysis) Plus Awareness Week

GBA Plus Awareness Week was first launched in 2012 to increase understanding among federal public servants of the relevance of GBA Plus to their work. The Government of Canada defines the term “gender-based analysis plus” as “an analytical process used to assess how diverse groups of women, men and people of all genders may experience policies, programs and initiatives. The “plus” acknowledges that GBA goes beyond biological (sex) and socio-cultural (gender) differences. We all have multiple identity factors that intersect to make us who we are; GBA+ considers many other identity factors, like race, ethnicity, religion, age and mental or physical disability.”

The theme for this year is “Intersectionality in Action: Moving Forward on an Enhanced Approach to GBA Plus.” This supports the process of advancing equality and inclusion for everyone in Canada. Events throughout GBA Plus Awareness Week help develop and support inclusive and responsive policies, programs, services, and decision-making that affect the well-being of all Canadians.

May 10: World Lupus Day

Lupus is a serious, life-altering, and fatal disease that requires in-depth understanding and support for the affected persons. Lupus is an inflammatory disease/autoimmune disease that occurs when the body system attacks its own tissues and organs. Inflammation resulting from this may affect various body organs, including the skin, kidneys, brain, blood cells, lungs, heart and joints. To help raise awareness about lupus, you might consider wearing purple and sharing lupus facts on social media. One interesting fact is that while anyone can develop lupus, 90% of people with lupus are women.

The World Lupus Federation encourages people to share the ‘Lupus Awareness Toolkit’, which includes more specific ways to spread awareness. Some of these are:

Awareness and Advocacy:

Contact local officially to ask them to light up a landmark, monument or building the colour purple (the colour supporting Lupus Awareness Day)

Media Tools:

Share stories and raise the national profile of Lupus by posting on social media

Government Proclamation:

Reach out to government officials to raise awareness of important priorities surrounding Lupus, such as the need for improved patient care.

Signs and Symptoms:

Understanding the common signs and symptoms of Lupus is critical to raising awareness. For more information, refer to the list of symptoms and risk factors on the World Lupus website.

May 14: Apraxia Awareness Day

Childhood Apraxia of Speech (CAS) is a rare but severe motor speech disorder that affects less than 1% of children. Children with Apraxia often have difficulty speaking because they have challenges learning or carrying out the complex sequenced movements necessary for intelligible speech (e.g., moving their jaw, lips, or tongue). This is a day to spread awareness of what this disorder means and how Speech-Language pathologists can best support the child and family with appropriate early intervention!

Children with CAS may also require multidisciplinary support, not only for their speech challenges but their fine and gross motor movement. Frequent therapy, along with providing ways to communicate while learning to speak clearly (e.g., Alternative and Augmentative Communication), are helpful tools to support our clients and their families. Every child deserves a voice! Visit Apraxia Awareness Day – Childhood Apraxia of Speech for more information.

May 17: International Day Against Homophobia, Transphobia & Biphobia

The International Day Against Homophobia, Transphobia and Biphobia holds significant importance as a global initiative established in 2004 to spotlight the pervasive violence and discrimination endured by individuals across diverse sexual orientations, gender identities and expressions, as well as sex characteristics. Managed collaboratively by various regional and thematic networks, the day is observed in over 130 countries, despite prevailing legal barriers in many. Its recognition extends from grassroots initiatives to official endorsements by states, international bodies like the European Parliament and numerous local authorities. This year’s theme, “Together Always: United in Diversity,” underscores the collective effort to combat discrimination and promote inclusivity. The selection of May 17th commemorates the World Health Organization’s (WHO) landmark decision in 1990 to remove homosexuality from its list of mental disorders, symbolizing a global call to action for policymakers, media, corporations and society at large to confront the challenges faced by marginalized communities.

Visit May17.org to learn more.

May 18: Global Accessibility Awareness Day

The third Thursday in May each year marks Global Accessibility Awareness Day, which falls on May 18 this year. Created in California in 2011 by a web developer, the awareness day quickly grew in popularity and was formally recognized by the technology sector a year later. This awareness day provides the opportunity to recognize the importance of increasing the use of accessible features in technology, particularly implementing accessible features into websites and computer programs.

Here in Ontario, companies are required by law through the Accessibility for Ontarians With Disabilities Act to ensure that their websites and social media accounts align with the requirements set out by the AODA. If you are interested in learning more about how to make your social media more accessible, then be sure to check out this video for some tips and tricks. – https://youtu.be/MKTpDOccHzg?si=nGpG9BfR2mfBWBEY

In May, we acknowledge Cinco de Mayo, Vesak and Trinity Sunday. Read more about each holiday/celebration below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

May 5: Cinco de Mayo

Cinco de Mayo, or the fifth of May, is a holiday that celebrates the date of the Mexican army’s May 5, 1862, victory over France at the Battle of Puebla during the Franco-Mexican War. The day, which falls on Sunday, May 5, 2024, is also known as Battle of Puebla Day. While it is a relatively minor holiday in Mexico, in other countries, Cinco de Mayo has evolved into a commemoration of Mexican culture and heritage, particularly in areas with large Mexican-American populations.

Cinco de Mayo is widely interpreted as a celebration of Mexican culture and heritage, particularly in areas with substantial Mexican-American populations. On Cinco de Mayo, revellers mark the occasion with parades, parties, mariachi music, Mexican folk dancing and traditional foods such as tacos and mole poblano. Some of the largest festivals are held in Los Angeles, Chicago and Houston.

May 23: Vesak

Vesak, or the Day of the Full Moon in May, is the most sacred day to millions of Buddhists around the world. Two and a half millennia ago, in the year 623 B.C., the Buddha was born on the Day of Vesak. On the Day of Vesak, the Buddha attained enlightenment and passed away in his eightieth year.

The exact date of the Day of Vesak is based on Asian lunisolar calendars and is primarily celebrated in Vaisakha, a month of both the Buddhist and Hindu calendars. Buddhism is one of the oldest religions in the world, and millions of people around the world follow the teachings of Buddha. On Vesak, followers assemble in their temples before dawn for the ceremonial hoisting of the Buddhist flag. Followers will also sing hymns in praise of the holy triple gem: the Buddha, the Dharma (his teachings), and the Sangha (his disciples).

May 26: Trinity Sunday

This year’s Trinity Sunday falls on May 26. Trinity Sunday is a Christian festival widely celebrated by Western Churches. It falls on the first Sunday after Pentecost, which is the 50th day after Easter. Trinity Sunday, in its essence, celebrates the mystery of faith and unity on and of the Holy Trinity: the Father, the Son, and the Holy Spirit. The Trinity is not mentioned in Scripture, but Christians belonging to Western Churches celebrate it and God’s love for humans because of their faith and utmost appreciation for the Trinity itself. Many Western Churches celebrate the occasion with symbols of fire, wind, and a dove.

For over a decade, the Family Engagement Team has supported families to be an active part of their child’s therapy and support team. Our lived experience has shown us that our knowledge of our own child is a powerful tool when combined with the professional knowledge of various early childhood development experts.

Research supports our hypothesis that engaged caregivers as active team members in their loved one’s healthcare leads to many positive outcomes (https://www.cfhi-fcass.ca/docs/default-source/itr/tools-and-resources/essential-together/evidence-brief-en.pdf ) including but not limited to:

Enhanced Patient and Family Experience:

Caregivers/families know their child’s medical history best. They know how their child’s journey, carry lists of medical professionals and binders of information on procedures, diagnoses, hospital visits and discharges, etc. They are well-connected and versed in their child’s medical journey.
Caregivers know the details of what is typical and atypical when it comes to reactions to medications, appointment/hospital triggers/stressors, and surgery recoveries. They understand the inner workings of their child’s mind, mood, and communication, whether verbal or non-verbal. Understanding when a child has reached their limits also avoids overstimulation and overwhelm.
Therapy appointments are opportunities for caregivers to learn vital tools from the therapist. This promotes the transferability of skills and techniques to be worked on by the caregivers outside of therapy sessions, providing the opportunity to do therapy with their child when they are ready.
Caregivers can best determine if their child is unable to participate in therapy at any given point. As therapy time is precious, knowing when to move allows caregivers to recover the session by informing the therapist of the appropriate time to move to a mediated model, in which parents can participate in the session to continue it later at home.
Encouraging caregivers to provide session modification suggestions to fit their child’s interests or abilities acknowledges caregivers as the experts of their child. They can feel confident in knowing that their thoughts are valued and that they are capable of practicing the tools they are taught in therapy sessions at home.
Caregivers are given a voice to express their child’s and their own needs/concerns and goals. When acknowledged as an integral part of their child’s care, caregivers and therapists’ relationships improve through greater transparency, respect, integrity, honesty, and openness, leading to better patient care and support.

Better Health Outcomes:

Healthcare quality is increased through a professional and candour flow of communication with the child development experts and their caregivers. Working as a team maximizes time and effort. It brings comfort, order and routine to a child seeing a continuation of care from therapy sessions to home, and home to therapy sessions.
Caregivers are with their child for many waking hours. This allows time to really practice the techniques learned in therapy and supports the generalization of skills. However, funding, insurance, and time in therapy can only go so far. Caregivers can take therapy much further if they integrate parts of it into their daily lives.
Caregivers feel empowered, understood, and supported. Caregiver burnout and isolation may be minimized or prevented, promoting better health outcomes for children and caregivers.

Continuity of Care:

Quality of care over time can be achieved through goal setting and planning for your child’s future. It reduces fragmentation of care to improve your child’s safety and abilities. Caregivers take an active role through goal setting, giving them the ability to make goals that are meaningful to their family. This can be done by incorporating tasks, skill-building and goals that fit into the child’s everyday activities. By sharing with your clinician your child’s likes and dislikes and/or schedules and routines you have at home, opportune times to practice a particular skill keep it relevant for the child.
The number of therapy sessions allotted often remains insufficient due to availability, resources, funding, and/or insurance coverage. Make the most of it. Caregivers will still be there after sessions, groups, and therapy end. Actively engaged caregivers can extend and build on the skills learned in the Centre.

“My best advice is… you must put in the work. For every one day at Grandview Kids, you are going to have 6 days, 13 days at home where everything really happens. Grandview Kids’ is going to give you the tools to get that work in.”
– Grandview Kids Caregiver

Moyamoya disease is a rare blood vessel disorder in which certain arteries in the brain become blocked or narrows. This can cause a brain bleed or stroke, and the damaging effects of strokes can include seizures, paralysis and vision problems. Moyamoya may occur at any age but most commonly affects children.

Grandview Kids Client Story:

Three-year-old Xander was only 10 months old when he had a seizure, which turned out to be a stroke. While having an MRI done in-hospital, they discovered a blood clot and a stroke actively occurring. His MRI findings showed that his vessels had “disappeared,” and he was diagnosed with Moyamoya, which in Japanese means a “puff of smoke.” Xander underwent bilateral brain surgery to help with blood flow and better the success of stroke prevention. Unfortunately, soon after the surgery, he ended up having another stroke requiring time spent at Holland Bloorview Kids Rehabilitation Hospital to help regain his left-side strength.

The strokes that Xander suffered from affect his daily living as they have caused severe and long-lasting damage to his motor control. His left-hand does not function properly, so he struggles to carry things and almost forgets the left hand exists. He had a brace for his left hand as well as a brace for his leg which had also been weakened by the strokes. Xander has chromosomal abnormalities and an autism spectrum diagnosis and faces Ear, Nose and Throat (ENT) and digestive challenges. Xander is part of Grandview Kids’ Complex Care Clinic, a multi-partnered program that brings local complex care planning to deliver continuity of care coordination to children with complex medical needs. Through Grandview Kids, he also receives physiotherapy, speech-language pathology occupational and recreational therapy.

As a child with complex medical needs due to a rare disease, his parents find themselves on a difficult and foreign path. There remains a lack of information on Moyamoya disease so Xander’s parents are provided with limited insight as to what his future may look like. Being able to manage work, safe childcare, personal relationships, and numerous weekly appointments is challenging. His parents’ biggest hardship currently is being able to find someone to watch Xander who is comfortable in supporting him with all his complex medical needs. Though he continues to improve, and his speech is returning, his parents face the unpredictability of this progressive disease. It can be exhausting having to deal with strangers who are ignorant and treat him differently or professionals who question parental intuition, but Xander’s mom, Laura, will continue to fight for her child. “You know your child the best, so if you think something is wrong, keep advocating for them.”

Red Dress Day, the National Day of Awareness for Missing and Murdered Indigenous Women and Girls and Two-Spirit People (MMIWG2S), is observed annually on May 5. People mark the day by hanging red dresses from trees, windows, fences, and balconies. The dresses are visual reminders of the thousands of missing Indigenous people in Canada.

Through our shared values of belonging, excellence, connection, discovery and celebration, Grandview Kids commits to seeking truth and upholding reconciliation. That is why we acknowledge and seek to spread awareness about the importance of Red Dress Day for clients, caregivers, staff, partners and the community.

Why this matters

In its 2019 report, the National Inquiry into Missing and Murdered Indigenous Women and Girls said the crisis constitutes a genocide of Indigenous people, citing, “Indigenous women are 12 times more likely to be murdered or go missing than other women in Canada, and 16 times more likely to be killed or disappear than white women. The report also cited research from Statistics Canada showing Indigenous women and girls accounted for almost a quarter of female homicide victims between 2001 and 2015,” though they represent only 5 percent of women in Canada.

Amnesty International notes that, currently, Indigenous women make up 16 percent of all femicide victims and 11 percent of all missing women. Indigenous women, girls and 2SLGBTQQIA+ peoples are also six times more likely to be murdered than their non-Indigenous counterparts. These high rates of violence have drawn widespread expressions of concern from national and international human rights authorities, which have repeatedly called for Canada to address the problem.

How the movement began

The roots of Red Dress Day can be traced back to the powerful art project of Canadian Métis artist Jaime Black. In 2010, Black initiated the “REDress Project” as a visual reminder of the staggering number of missing and murdered Indigenous women across Canada. Black-hung red dresses in public spaces, from trees to lamp posts, create a stark contrast against the landscape, evoking both sorrow and resilience.

What started as an art installation soon morphed into a movement.

Indigenous Peoples, allies and advocates across Canada and beyond embraced the symbolic red dress as a rallying cry for awareness and action. Red Dress Day emerged as an annual event, bringing people together to honour the lives lost and demand justice for the victims and their families.

Get involved

People are encouraged to wear a red dress, display red dresses in public spaces, or put a red light outside their doors. Gatherings such as ceremonies, marches, vigils and events are planned across the country. The events serve as places for people to come together and share their sorrow, anger, grief and hope for a better future.

Educate yourself by reading the National Inquiry into Missing and Murdered Indigenous Women and Girls.
Read Tiny House Warrior Kanahus Manuel’s powerful interview with Gender Rights Campaigner Elishma Noel Khokhar to learn more about the threats faced by Indigenous women and gender-diverse people on the frontlines of land and water defence.

The lands, waters, nature and sky that Grandview Kids is privileged to exist within have long been home to the Michi Saagiig Anishinaabeg. We acknowledge the lands of the traditional and treaty territories covered under the Williams Treaties, including the Mississaugas of Scugog Island First Nation, Alderville First Nation, Hiawatha First Nation, Curve Lake First Nation and the Chippewa Nation of Georgina Island, Beausoleil and Rama. We are responsible for building stronger relationships with clients, caregivers, partners and colleagues from First Nations, Métis and Inuit communities.