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Navigating the intersection of disability and race as a caregiver: Honouring Black History Month

Awareness Days

Celebrating Black History Month!

A few years ago, when my child was six-years-old, we walked into a clinical office (not affiliated with Grandview Kids). He was happily flapping his hands, ready to get started with his Alternative and Augmentative Communication (AAC) device for the first time. The professional we were meeting with flinched. I was confused because she worked with disabled children who stim all the time. “Let’s relax a little,” she said and pushed out a laugh. “Does he get angry like this a lot?” she asked. I looked at my son. He was calm. He was just happily flapping and vocalizing, like I had seen many other autistic children do. She pulled away from us at the table. “He won’t hit you,” I said calmly, and she reacted positively to my reassurance. I realized that she was afraid of him. Our appointment went on as I had originally expected, but I left feeling confused. 

After pondering “why” I felt so uneasy about our interaction, I remembered some research that explained my experience. I realized that my son had experienced a microaggression. This professional most likely had experience dealing with white autistic children, but my son is Black. She may not even have been conscious that she was doing it, but the effects of her posture, tone and questions lingered. It took me years to articulate how she made me feel during that appointment. In reality, Black children are perceived as angry, more often than white children (Halberstadt et al., 2020). This is an implicit bias. 

 I am privileged to have a front row seat to the lives of my three sweet, hilarious and determined Black autistic children, each with varying support needs. I try to take every opportunity to celebrate our different disabilities. On one hand, there is joy in this journey. On the other hand, there are also difficulties placed on them by society, simply because they are disabled. This is ableism. In addition to living in a world where others may not understand their disabilities, we also live in a world where people view my children as angry because they are Black. This is racism.  

Black History Month is exciting because we get to publicly celebrate all the joyful things about being Black. It is also an opportunity to highlight the difficulties that have been placed on us by society, simply because we are Black. Just as we must all learn to look at our biases towards the disabled community, we must also look at our biases towards the Black community. Being Black and disabled is a unique, intersectional experience that is often overlooked and dismissed. I challenge us to dismantle ableism and racism, especially this month. I cannot wait to see the impact that my children will have in the world, equipped with the knowledge that they are valuable regardless of their abilities but also because they are Black.   

Summary: https://www.apa.org/news/press/releases/2020/07/racialized-anger-bias 

Article sourced: “Racialized Emotion Recognition Accuracy and Anger Bias of Children’s Faces,” by Amy G. Halberstadt, PhD, Alison N. Cooke, PhD, Dejah Oertwig, MA, and Shevaun D. Neupert, PhD, North Carolina State University; Sherick Hughes, PhD, University of North Carolina-Chapel Hill; and Pamela W. Garner, PhD, George Mason University, Emotion, published online July 2, 2020.    

Cassandra never imagined how many turns her family’s journey would take, but loving her son, Brock, has taught her resilience, creativity and fierce advocacy. Brock is nearly 13 years old and lives with complex medical needs, including hydrocephalus with a ventriculoperitoneal (VP) shunt, cerebral palsy, chronic kidney disease, autism spectrum disorder, intellectual disability, developmental delay and a neurogenic bladder that requires catheterization. He lives at home with his mom, Cassandra, his sister, Olive, his grandma and his stepdad. They face each day together as his tight-knit care team.

Before 2019, Brock ate and drank by mouth. Then a life-changing fall down 13 steps caused a brain bleed, and Brock slowly lost the ability and desire to eat. His weight dropped to dangerous levels, and Cassandra knew something had to change. Choosing a feeding tube was not easy, but it became necessary when Brock stopped gaining weight altogether. The feeding tube became a lifeline.

The learning curve was steep. Cassandra became the only one trained to manage Brock’s pump and tube changes, while also teaching others how to care for him, since in-home nursing was not an option. The cost of equipment added constant stress, even with assistance programs, and emergencies often meant long trips to The Hospital for Sick Children (SickKids) because local hospitals were not trained to manage paediatric feeding tubes. There were unexpected challenges too, like Brock learning how to open his feeding line mid-feed, or discovering that their travel backpack blocked the tubing, leading the family to invest in intravenous (IV) poles and multiple pumps so Brock could move freely at home and out in the community.

Despite the hurdles, the feeding tube changed Brock’s life for the better. He is now gaining weight appropriately and has more energy to enjoy the things he loves, just like any child. These include camping with his family, attending Scouts, playing soccer, riding his bike in the summer, watching Peppa Pig and lining up his dinky cars. Grandview Kids has been a constant source of support for Brock and his sister as they have accessed services, including occupational therapy, physiotherapy, speech-language pathology, the Complex Care Program, therapeutic recreation and dietitian support to ensure Brock gets the nutrition and fluids his body needs.

Cassandra’s message during Feeding Tube Awareness Week is one of honesty and hope. She advises caregivers and parents exploring the use of a feeding tube to ask questions, explore all tube options, seek out community resources and not to let fear or doubt stop them from choosing something that can help their child thrive. “You don’t have to do it alone,” Cassandra emphasizes. “If challenges arise, reach out to hospital g-tube teams, members of your family and others in the Grandview Kids community who understand.” Brock’s feeding tube is not a limitation; it is a part of the reason he continues to grow, explore and be exactly who he is.

Learn more about the Family Engagement Team

If you want to connect with others in the Grandview Kids community, reach out to a Peer Navigator on our Family Engagement Team (FET) to start fostering those relationships and gain additional support from peers. You can meet someone from the FET in the Family Resource Centre at Grandview Kids’ Ajax-based headquarters, The Jerry Coughlan Building, Monday through Friday, from 9 a.m. to 2 p.m. 

For more information, email the team at familyengagement@grandviewkids.ca or join the Grandview Kids’ Online Parent Support page to make connections and learn about all upcoming events. 

Jack is a bright, determined three-and-a-half-year-old whose smile and spirit often arrive before his words do. To those who know him, Jack is a fighter, a leader and a little light guiding everyone around him forward, one hard-earned step at a time. His parents, Olivia and Matt, and loving grandmothers, Julie and Michelle, work hard together to raise Jack, but truly believe that he is the one teaching them to grow in unimaginable ways.

At seven months old, Jack suffered damage after a viral illness (COVID-19), causing him to lose his ability to sit, army crawl, roll and grasp objects, essentially leaving him in paralysis for several months before he miraculously recovered. His muscle tone was affected, and his body seemed to shut down in ways no one could explain. For months, Jack and his family cycled through neurology, genetics and paediatric teams at The Hospital for Sick Children (SickKids) and Holland Bloorview Rehabilitation Centre, searching for answers. Without a diagnosis, his parents did what they could to support his gross motor skill development through physiotherapy, occupational therapy and constant advocacy, all the while grappling with the fear of not knowing what Jack truly needed.  

Just as Jack began home daycare when Olivia returned to work, his care provider noticed concerning symptoms. Jack began shaking and growing increasingly lethargic. What followed was lifesaving. Jack fainted at daycare and was rushed to the hospital. That moment led to the discovery that Jack had initially suffered a metabolic stroke and now had suffered a second. 

At 23 months old, after immense advocacy and support from his medical team at SickKids and Health Canada, Jack was diagnosed with Pyruvate Dehydrogenase Complex Deficiency (PDCD), a rare metabolic condition that prevents the body from properly converting carbohydrates or sugar into energy. The condition is so rare that most children, particularly boys, do not survive infancy. By the time of his diagnosis, Jack was severely hypotonic and required a ventilator and a gastrostomy tube (G-tube). His brain and organs were not receiving the energy they needed to properly function. The diagnosis was both devastating and relieving, terrifying in its implications, but lifesaving in its timing. 

Treatment began immediately. Jack was placed on a strict ketogenic diet, carefully measured down to every gram of fat, protein and carbohydrate. He takes over 20 supplements daily, including thiamine, and undergoes regular monitoring to ensure his body remains in balance. It’s a complex and demanding routine, but it gave Jack a chance. It did make it difficult to find a new daycare provider that was comfortable with Jack’s medical needs, interviewing about 12 different providers. This stress was alleviated when they met Angela, who reassured them of her involvement and care, treating Jack as one of her own and becoming part of their family.  

Jack and his daycare provider, Angela

Today, after a year on the ketogenic diet, Jack is walking with a walker, communicating and engaging with the world in his own determined way. His fine motor skills are strong, his personality shines, and although every movement requires immense effort, Jack shows up ready to try.  

Throughout his recovery, Grandview Kids has been a cornerstone of support for Jack and his family.  

Referred through SickKids after his initial metabolic stroke, Jack began receiving physiotherapy, occupational therapy and speech-language pathology services at Grandview Kids, even before his diagnosis. His therapists stood beside the family at their lowest points, helping Jack relearn how to sit, crawl, stand, walk and communicate. 

“Grandview Kids was there before we had answers. They saw us at our worst, and they helped carry us through.” – Olivia, Jack’s mom 

Jack’s therapists also guided the family through equipment needs like standers and orthotics, supported transitions with daycare and connected them to vital resources when the path forward felt impossible to navigate. More than providers, they became trusted partners, a second family walking alongside them. 

Life with a rare disease means living without certainty. Jack’s future remains unknown, but his family takes it one day at a time. They advocate fiercely, lean on their village, including grandparents, medical teams, daycare providers and Grandview Kids, but ultimately follow Jack’s lead. 

“Jack has changed all of our lives for the better,” Olivia says. “He’s teaching us patience, compassion and strength. He works ten times harder than anyone else just to take a single step. And he keeps going.” 

Each month, the Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee highlights dates of significance. These may include religious observances, clinical and medical awareness dates, important events or other significant moments within the community. See below for a broader list of additional dates of significance.

In February, we acknowledge White Cane Awareness Week, The Missing Women’s Memorial March, Lunar New Year, Ramadan and Pink Shirt Day. Below, read more about each date of significance, written by members of our IDEA Committee.

White Cane Awareness Week: February 1 to 7

White Cane Awareness Week takes place during the first week of February and is observed across Canada. The week focuses on raising awareness about how people who are blind or have low vision travel safely and independently, including through the use of white canes. White canes are mobility tools used by some people who are blind or visually impaired. The cane is held in front of the user and moved side to side while walking, providing information about the surrounding environment, such as changes in surface texture, curbs, crosswalks and obstacles. White canes are typically straight and may fold when not in use.

Guide dogs are also specially trained to support safe travel, work and community participation. Whether using a white cane or a guide dog, individuals receive orientation and mobility (O&M) training to travel safely and efficiently. Some people who are blind or have low vision may also choose to travel with assistance from another person by lightly holding their guide near the elbow. These tools and supports help promote independence and confidence.

Blindness exists on a spectrum, and each person’s experience and needs are different. When in doubt, ask before offering assistance rather than making assumptions. To learn more, click here to read Shelley Morris’ interview with the Canadian Council of the Blind about her experience living with low vision.

The Missing Women’s Memorial March: February 14

On February 14, Canada honours and remembers the lives of missing and murdered Indigenous women, girls and Two-Spirit people (MMIWG2S+). Across the country, the Missing Women’s Memorial March provides an opportunity to grieve lost loved ones and support those who have experienced such loss.

A 2023 Statistics Canada report found that Indigenous women and girls were six times more likely to be murdered than other groups in Canada. Many of these cases do not result in justice, a consequence of racism, homophobia, colonization and misogyny. The annual marches highlight the ongoing need to stand up for the rights of MMIWG2S+ and honour the memory of those lost, while acknowledging the systemic injustices that continue to harm Indigenous people in Canada.

For more information, visit the Canadian Museum for Human Rights website to read their resource guide on missing and murdered Indigenous women, girls and 2SLGBTQI+ people.

Lunar New Year: February 17

The Lunar New Year is determined by the first new moon of the lunar calendar and in 2026 falls on February 17. The holiday is celebrated by many cultures in countries including China, the Philippines, Malaysia, Singapore, Hong Kong, South Korea, Taiwan, Thailand and others.

In China, the celebration is specifically known as Chinese New Year. Red decorations and clothing are commonly seen, as red is believed to ward off evil spirits and negative energy. Family gatherings are an integral part of the holiday, with meals shared together and offerings made to ancestors. Red envelopes containing money are often given to children and seniors to wish them a safe and prosperous year. Fireworks and public celebrations are also common. Festivities typically last several days and include a variety of activities and cultural events.

Ramadan: February 17 to March 19

Ramadan is one of the holiest months in Islam, marking the period when the Qur’an was first revealed. During Ramadan, Muslims fast from food and drink from pre-dawn to sunset as a way to strengthen self-discipline, gratitude and compassion, and to draw closer to God. The month is marked by increased prayer, Qur’an reading and spiritual reflection. Those who are unable to fast, including pregnant or nursing women, children, the elderly or people who are ill, are exempt.

Ramadan is the ninth month of the Islamic lunar calendar, which shifts earlier each year. The month typically lasts 29 or 30 days and begins with the sighting of the new moon, although some communities follow astronomical calculations. Fasting during Ramadan is intended to cultivate God-consciousness, known as taqwa, and encourage moral growth by avoiding negative behaviour. Ramadan is also a communal time, with families and friends gathering to break the fast together and attend prayers at the mosque.

Pink Shirt Day: February 25

Pink Shirt Day is celebrated to spread awareness about bullying while promoting kindness, inclusion and respect. The movement began in 2007 in Berwick, Nova Scotia, after a student was bullied for wearing a pink shirt. Two Grade 12 students, David and Travis, responded by purchasing pink shirts and encouraging their classmates to wear them as a sign of solidarity. Their simple act of kindness was met with widespread support and helped launch what is now known as Pink Shirt Day.

Since then, Pink Shirt Day has grown into a national and international movement that encourages individuals, schools and communities to stand together against bullying. In Canada, the last Wednesday of February is recognized as Pink Shirt Day, providing an opportunity to reflect on the importance of empathy, acceptance and inclusion. The day serves as a reminder that small actions can have a lasting impact in creating safer, more welcoming spaces for everyone.

Visit the Pink Shirt Day website to learn how you can stand up to bullying and promote inclusion!

Other dates of significance in February:

  • World Hijab Day: February 1
  • Feeding Tube Awareness Week: February 1 to 7
  • Tu BiShvat: February 1 to 2
  • Groundhog Day: February 2
  • Setsubun: February 3
  • Shab-e-Barat: February 3
  • Congenital Heart Defect (CHD) Awareness Week: February 7 to 14
  • International Day of Women and Girls in Science: February 11
  • Valentine’s Day: February 14
  • Parinirvana Day: February 15
  • International Childhood Cancer Day: February 15
  • Family Day: February 16
  • International Mother Language Day: February 21
  • Cochlear Implant Day: February 25
  • Eating Disorders Awareness Week: February 23 to March 1
  • Rare Disease Day: February 28

In January, we acknowledge New Years Day, Mahayana New Year, Lohri, Orthodox New Year, Makar Sankranti and Thai Pongal. Below, read more about each date of significance, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

New Year’s Day: January 1

January 1 marks the first day of the year in the Gregorian calendar. The day is commonly celebrated with fireworks, staying up until midnight to welcome the new year, gathering with family and setting goals or resolutions for the year ahead.

Mahayana New Year: January 3

Mahayana New Year, also known as Vesak, is a Buddhist observance that commemorates the birth, enlightenment and death of the Buddha. It is a time for reflection on the past year and a focus on hope, positivity, kindness and good wishes for the year ahead. The day is traditionally marked through family and community gatherings, food, prayer ceremonies, meditation sessions and lectures. Originating in ancient India, the observance spread across Asia and is now celebrated by Mahayana Buddhists in countries including China, Japan, Korea, Vietnam and Taiwan.

Lohri: January 13

January 13 marks Lohri, a winter harvest festival celebrated by many Punjabi communities in Canada and around the world. The day marks the end of winter and the return of longer days and is commonly celebrated by gathering with family and friends, lighting bonfires, sharing traditional foods and enjoying music and dancing.

Orthodox New Year: January 14

Orthodox New Year is observed on January 14 by those who follow the Julian calendar, including communities in Russia, Ukraine, the Middle East and Ethiopia. Celebrations vary and may include church services, social gatherings and shared meals.

Makar Sankranti: January 14

Makar Sankranti is a Hindu festival celebrated in January that marks the sun’s transition into the astrological sign of Makara, or Capricorn, and the beginning of its northward journey known as Uttarayana. Because the festival follows the solar calendar, it is observed on the same date each year, unlike many other Hindu festivals. The transition also signifies the onset of spring, longer days and the completion of the winter harvest.

Celebrated across India, Makar Sankranti is known by different names and traditions depending on the region. These include kite flying in Gujarat, preparing sweets made from sesame seeds and jaggery in Maharashtra, lighting bonfires in Punjab and making traditional rice dishes in Tamil Nadu. The festival also holds religious significance through offerings made to the Hindu sun god, Surya and the practice of ritual bathing.

Thai Pongal: January 14

January 14 marks Thai Pongal, a harvest festival celebrated by Tamil communities internationally and widely regarded as the Tamil New Year. The festival marks the beginning of the Tamil month of Thai and focuses on giving thanks to the Sun God for a successful harvest, while recognizing the role of nature, farmers and livestock. Celebrations typically include family gatherings, cultural rituals and the preparation of the sweet rice dish pongal, a symbol of prosperity and renewal.

Dana and her husband, Peter, describe their family of four as one tied together by steadfast care and support. 14-year-old Leo’s big brother, who is 11 years his senior and a stepson to Dana, does not live with them full-time, but is a constant, loving presence. Despite the age gap, he remains an attentive sibling who delights in Leo’s victories, large and small. Three grandparents, two on his father’s side and Dana’s mother, complete Leo’s support network. They attend every lesson, skill-building class and new interest that captures Leo’s imagination. Whether it be swimming, basketball or skating, they are there, cheering and learning alongside him. 

Leo’s Grandview Kids journey began as a toddler. Educators in his daycare noticed he was not progressing in speech at the same pace as his peers and expressed concerns about his limited eye contact and lack of response to his name. By age four, after an assessment at Grandview Kids, Leo was diagnosed with autism spectrum disorder (ASD). Dana still remembers the swirl of terminology, questions and fears that followed. She recalls standing in her in-laws’ house, watching Leo linger under the ceiling fan and stim by flapping his arms, yet still feeling surprised when the diagnosis confirmation arrived. 

After years of navigating infertility, Leo was a miracle to Dana and Peter. This diagnosis did not leave them as distraught and hopeless as they expected, knowing that their task at hand was to figure out how to best help Leo. “The more knowledge you have, the better,” she says. “It’s not good to be in the dark. Knowledge lets you make things better.” Peter approached the diagnosis with characteristic determination, eager to understand every possible resource. He uses a Lord of the Rings metaphor to describe their parental role: “Aragorn walks toward the throne, but Legolas and Gimli clear the way.” Their job, he said, was to clear Leo’s path of as many impediments as possible. 

The early years were filled with daunting decisions. Choosing classroom placements, reading psychometric reports, worrying about labels and balancing accommodations and expectations. Dana’s mantra for herself, and now for other parents and caregivers, became clear: “You will make the best decisions you can with the information you have. And you can always adapt as you go. Give yourself grace.” 

Dana describes Grandview Kids not merely as a service provider, but as a lifeline. After receiving the diagnosis, Leo underwent hearing assessments, speech therapy and then ABA-based social skills training. Occupational therapy followed as the school identified fine-motor challenges. Over time, programs shifted based on Leo’s needs and interests, ranging from Lego groups to summer literacy groups to, eventually, a “Typing Without Tears” keyboarding program, which became essential during pandemic learning. Grandview Kids always encouraged revision, guiding his parents to ask, “What does Leo need most right now?” and the family learned to recalibrate continuously. 

Dana recalls the moment she walked into Grandview Kids’ old Oshawa headquarters for the first time. She had expected to have to travel to downtown Toronto for specialized services. Instead, she found “warmth at every layer” from the staff, the digital floor signage, the mini library and even the receptionist who made families feel seen. “It felt like resource heaven,” she says. “I felt enormous relief that Grandview was here. It became my life raft.” 

In addition to support from Grandview Kids, family vacations, especially trips to the Caribbean, have been transformative for Leo. The new environments, unfamiliar routines and diverse social encounters have broadened his comfort in these settings and expanded his interests in sports and the outdoors.  

Travel, Dana notes, has quietly expanded his world. Leo’s personality has also blossomed over time. Once a brooding, withdrawn child who rarely engaged, he gradually developed a sense of humour, sparked by books like Captain Underpants and carefully curated YouTube videos. Today, he is outdoorsy, active and mischievously funny. “You never know what the trigger is,” Dana reflects when learning to lean into Leo’s interests. “A teacher, a YouTuber, a book – someone uncovers a new part of him.” 

Over the years, the defining feature of Dana and Peter’s approach has been adaptive parenting as they closely listen to Leo’s emerging interests, concerns and strengths, especially when he cannot articulate them fully. When he became concerned about physical abilities, they leaned into his newfound love of sports. When his writing challenges became overwhelming, they shifted toward technology solutions. When social supports were needed, they prioritized therapy groups, camps and friendships. 

“You have to be flexible and rethink your approach as a parent,” Dana says. “Between mental and physical health, we’ve had so many balls to juggle. We do our best not to drop anything.” As Leo began high school this year, she reminds herself and others that perfect parenting does not exist. “As long as kids know they’re loved, it’s okay.” 

Today, Dana advocates for families like hers by sharing knowledge freely. “If I’ve learned something that helped us,” she says, “why not help another parent find that information sooner?” She imagines a community of ongoing learners, a network where insights, resources and support flow in every direction. 

For Dana, International Day for People with Disabilities is a vital moment to amplify these perspectives. “My son is a living example of the goodness that disabilities bring to our society,” she says. “Disabled people teach us how they are differently abled. They teach society to appreciate and enjoy differences because along the way, there are beautiful surprises.” 

What Dana wishes the community understood about children and youth with disabilities is simple but profound: “Be open. Be open to discovering what disabled people can teach you. Be open to ways of thinking and challenge the usual pace of the world. Be open to having enough patience and empathy to perceive the world through someone else’s lens.” 

As Leo steps into adolescence with confidence, humour and growing independence, Dana and Peter see the future not as a fixed destination but as a shared path, one that families, professionals and communities must continually clear together. Disability is not a limitation to be managed but a different way of existing to be understood, supported and celebrated. 

Dana Colarusso hosts a podcast called “Autistic, Beyond the Label,” a platform that invites parents, caregivers and families with autistic children and youth to engage in continuous learning and to share knowledge, information and resources freely.’

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