Awareness Days

Written by Maritza, our Grandview Kids Research Coordinator and Knowledge Broker.

May 24 is National Brother’s Day! This day has been around since 1997 when it was created by a woman named C. Daniel Rhodes in honour of her brother.

Here is the story of one of our Grandview Kids Staff, Maritza and her younger brother, Jamie:

“I was 6 years old when our family adopted my baby brother from Peru. My brother Jaime is strong, he has a very good memory, and he knows the lines of every Marvel movie. Jaime has a diagnosis of autism and bipolar disorder and currently lives in an adult group.

Both siblings playing at the park. — Maritza and her younger brother, Jamie, as children.

I would like to say when I was younger, I was always patient, kind and accepting of my brother, but the truth is there were many times I felt frustrated, embarrassed, or hurt by some of his behaviours (especially when we were out in public). While growing up as a sibling to a brother with complex needs had its challenges, it also had many joys and gave me a level of compassion and understanding that I think is pretty unique to other siblings like me.

Over the years, I have grown to appreciate the parts of Jaime’s world that he has chosen to share with me. Sometimes when we have a visit, Jaime can be very quiet, and other times he will communicate with me through movie lines. For example, if he is upset, he will repeat lines spoken by Marvel villains, and if he is feeling a little silly, he might be listing off Tony Stark lines. Most often, however, Jaime will simply hold my hand and try to take my French fries when I am not looking.

In the last few years, I have seen my brother be disproportionality impacted by the pandemic, which has been very difficult for our entire family. When I see how much work still needs to be done to make our community more inclusive, it motivates me to keep contributing to research that aims to promote meaningful change within the disability community.

As I continue to develop in my role as both an advocate and caregiver for my brother, I am humbled by all that my brother has taught and continues to teach me. Thank you, Jaime, and happy National Brother’s Day!”

Every year, on May 15, International Day of Families is celebrated throughout the world. This day highlights the significance of family and its value in society. Here is the story of one of our Grandview Kids’ Families, Debbie and Elliot:

“It has always been our mantra to give back to the community that helped Elliot so much when he was younger. Between his diagnosis, Speech-Language and Occupational Therapy, as well as Physiotherapy, he learned to talk and walk again. Grandview Kids had become part of our family and village, and we would not have Elliot where he is today without them. Grandview Kids opened so many doors and opportunities for Elliot later in life, including supporting him in writing his first journal article for the Canadian Journal of Autism Equity, as well as attending many public speaking and fundraising initiatives.

It was through his involvement in the Rec Therapy Program that he learned to love sports, and it ignited the passion in him! He is now on a team that has garnered international attention. Elliot is the Co-Captain for the Oshawa Vikings Mixed Ability team where his team came in second out of 24 other countries in the International Mixed Ability Rugby Tournament in Cork, Ireland, in June 2022.

Recently, he was selected by the MARI’s (Mixed Ability Rugby International) elite team to go join athletes from around the world to play in a competitive game in Belfast, Ireland, this May. From a young child who had many coordination issues to a full-fledged international and world athlete, Grandview Kids taught him that the sky is the limit and nothing is impossible. Elliot has turned his passion into a job and has two job titles at the Abilities Centre as a Physical Fitness and Literacy Associate, as well as a Mixed Ability Sports Facilitator.

I am a proud member of the Family Advisor Council (FAC), as well as a standing member of the Adolescent Transition Committee, using our lived experience moving through the various stages of Elliot’s life to help pave a smoother path for others. Though many times, we were in unchartered territory and faced many barriers; my hope is that by sharing these experiences, we can make the transition process much easier for other families.

Elliot also volunteers for the Youth Advisory Council (YAC) and often is asked to give his insight into issues facing youth with disabilities in employment, so he too uses his lived experience to help break down barriers for others.

Elliot, holding his book: Mateo’s Mixed Ability Match

Elliot and I recently wrote a children’s book called Mateo’s Mixed Ability Match, which details our experience at the IMART tournament. Elliot and I often work in tandem. We hope that retelling our stories and providing insight into our experiences in sports, employment, and disability advocacy will help others realize that their child has potential and that we should all dream big. Every child and family deserves that chance to spread their Grandview Kids’ sparkle!”

Alden (left) - a young boy with blonde hair sits beside his mom, Natasha (right). — Natasha and her son, Alden.

Natasha is a mom to three; her youngest is a Grandview kid. She works as part of the Grandview Kids’ Family Engagement Team. Here is Natasha and her son, Alden’s story:

My youngest wasn’t even six months old the first time I said the word “autism” out loud. It was to my husband. I had spent the better part of the last few months Googling:

“Why doesn’t my baby look at me?”
“What does flapping hands mean?”
“Why will my baby only sleep when he’s on me?”

I watched videos on YouTube about how autism is present in infants and babies. I didn’t know anything about autism, but I called my husband over and said, “I need to say this out loud, and maybe I’m crazy, and maybe I’m wrong.. but I have to tell someone. I think our son is autistic.”

Months go by, and at each doctor’s visit, we’re left with no answers, “He’s just a baby, kids develop differently, and he’s too young to tell.” So, we waited, and I Googled more…

“Why isn’t my son talking?”
“Is walking on your toes okay?”
“When will he recognize his name?”

Every question led me to the same outcome. Now we just needed to find someone to listen!

My son was also born prematurely, so he was followed by the FUNN clinic at Lakeridge Health. At his one-year check-up, I said it again, they told us if we have concerns at his 15-month check-up, they would bring in someone from Grandview Kids to do a speech assessment.

From the first day, Grandview Kids listened. We were referred to a developmental pediatrician, and on September 18, 2018, just one month before his second birthday, my son was diagnosed as Autistic, level 3, non-verbal. There were a lot of tears that day in the doctor’s office. But the tears were of relief for knowing that I wasn’t crazy and that we would finally be able to learn.

He is my third child, but I’m learning how to be a mom all over again.

Family and friends told us how “sorry” they were when they found out. Professionals told us they could help us fix him but that he would likely never talk to or understand us.

Alden and I are here to tell them they were wrong! Nothing changed the day he was diagnosed. He was the same little boy who had stolen our hearts from the moment he was born. I was a fool to wish I was wrong. Autism is beautiful! It’s a whole world that you miss out on until someone special invites you in.

We don’t want to change him; we simply want the tools to help him succeed in a world that struggles to accept anything different. A world I’ve never fit into either. “Dare to be different.” Those are the words my Mémère and mom would always say to me as a child. Acceptance is the next step toward a truly inclusive community.

Alden is now six-years-old. He has the best smile and laugh in the whole world! His humour and character are unmatched, and he gives the best hugs and squishes. He loves wrestling with his older brother and watching funny videos with his sister. His favourite thing to do is try and scare you, he thinks he’s hilarious! He loves Lightning McQueen, fart noises, trains and singing the “Wheels on the Bus” song all day long.

Alden with a cut-out poster around his head.

I wanted to find all the ways to support him, and along the way, I found a lot of information to support me too. The more I read and learned, the more my own life started to make sense.

I feel like with my work at Grandview Kids, working with staff and professionals, as well as being surrounded by the autism community, I’m pretty well connected. Yet it still took me four years and paying out of pocket to get my own autism assessment.

Oftentimes, adults go undiagnosed because they are simply unaware of autistic traits or they’ve learned to mask so well. Being self-diagnosed is common and accepted in the autism community. Getting a diagnosis is a privilege at any age, but the barriers for adults are honestly just cruel. Finally, on September 30, 2022, four years after my son, I was diagnosed as Autistic, level 2.

Now, I’m sharing the level with you all today, not because I believe in them but to show you how moderate/severe can look like with years of masking. Personally, I don’t believe in the levels because you can only diagnose us on the level that we present with at the time of the assessment. It’s not based on how it affects me or how much I’ve learned to mask.

Natasha wearing an Autistic and Proud t-shirt.

The good news is that I’m learning to unlearn! Unmasking is hard, but I deserve to be my authentic self. It’s a lot of undoing, but I’m doing the work. My son deserves to be proud of himself, and I’ll do the work to make sure he’s never ashamed of being autistic.

Often, my needs and my son’s needs, go against each other, so we are becoming experts on accommodations together.

Thank you, Grandview Kids, for listening when no one else would and continuing to listen and learn from those with lived experience. We will forever be grateful for everything Grandview Kids has done for our family. We’ve got a long way to go together, but I’m glad #TeamGrandview is part of our journey!

I’ve learned to see the world through my son’s eyes, and if you’re willing to get into his world instead of expecting him to join yours, it’s magical, and it feels more like home than anywhere I’ve ever been before. I have Alden, my family, and my work colleagues (who have become lifelong friends) to thank for helping me find myself, too!

Grandview Kids is proud to support, partner with and learn from autistic clients, caregivers, employees and community members. While society has greater awareness about autism than ever before, autistic people still face a number of challenges throughout life, including prejudice, bullying and limited job opportunities.

Awareness vs. Acceptance

Education is important, but we can’t stop there. Autism Acceptance means celebrating differences and encouraging tangible action to support and include autistic individuals. Acceptance means understanding and acknowledging the diversity of lived experiences, cultures and environments.

Definition of Autism Spectrum Disorder (ASD)

In clinical terms, Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder with a wide range of symptoms and ability levels. ASD is an encompassing diagnostic category that includes 2 symptom domains: 1) social communication impairments; 2) restricted, repetitive patterns of behaviours and interests (Zwaigenbaum et al., 2019).

It’s also important to know:

1. No two Autistic people/persons with Autism are the same.

2. Every Autistic person/person with Autism has their own unique mix of traits, strengths, sensory systems, personalities, interests and needs.

3. Autism is a dynamic disability, so a person’s needs or abilities may fluctuate or change.

Language matters

You may also have heard about person-first and identify-first language. This refers to how someone describes themselves or others.

Person-first example: Person with Autism

Identity-first example: Autistic person/Autistic

Tip: Ask about their preference! Follow their lead and be flexible, as preferences may change over time.

Definitions:

Neurodiversity refers to the natural diversity of human minds; it acknowledges the whole spectrum of neurodivergent and neurotypical individuals.

Neurodiverse is a term to describe a group of individuals who represent the spectrum of neurodiversity, including neurotypical and neurodivergent individuals. People cannot be neurodiverse.

Definitions:

Neurotypical, one neurotype, refers to having a mind or functioning that falls within societal standards of what is deemed typical or common. It’s the opposite of neurodivergent.

Neurodivergent, another neurotype, is an umbrella term for individuals who have a mind or brain that diverges from what is typical. It can be acquired or genetic.

How can you be an ally during Autism Acceptance Month and beyond?

Here are a few tips from our Ability Acceptance Presenter, Mitchell Daniels:

1. Educate yourself. Learn about Autism. Learn about disabilities. Know that some are visible and some are not. Learn from disabled people and value their perspectives.

2. Offer support, but let them take the lead. Asking how you can support someone is always a recommended step, but do not assume just because someone has different needs or abilities that they need help. Be open and friendly.

3. Avoid talking to someone’s support person first. Engage directly with the person to whom you are talking. Sometimes, people may defer to their support person but do not assume that is their preference.

4. Always be kind, understanding and patient. Some people may take longer to process information. Give them time to respond, and get comfortable with silence while you wait.

5. Recognize that not everyone communicates verbally. Give them time to demonstrate how they prefer to communicate. If the person uses communication technologies, watch what they’re doing and respond as you would usually. It’s just another way to talk. Remove distractions and give them your full attention.

6. Remember that language matters. Ask their preference, whether it’s identity-first or person-first. Be flexible and follow their lead, as their preference may change over time.

7. Educate others. Call out ableism, which dismisses the challenges of disabled people and assumes every person has the same capacity and resources to handle things. Aim to build spaces, communities and opportunities where differences are celebrated and encouraged.

These are just a few of the many ways to be an inclusive ally. Where are you going to start?

Brain Injury Awareness Month, recognized each March, provides an important opportunity to bring attention to the prevention of traumatic brain injury (TBI) and to promote strategies to improve the quality of life for persons living with TBI and their families.

Claudia N., a Grandview parent and member of our Family Advisory Council (FAC), tells her son Reid’s story:

“Brain injury is invisible and often misunderstood. The scars may not be obvious, but they are there. They show up in the way you move, talk, and process information. My son acquired a traumatic brain injury (TBI) after a rare complication of brain inflammation during influenza.

Claudia taking a selfie of herself with her two children. — Claudia N., with her children.

Claudia's son and daughter in a portrait like photo. — Claudia N., with her children.

He was a rep-athlete in hockey, basketball, soccer and baseball. The more contact he had in sports, the better. Now he can no longer have contact. This was his identity. He had to re-learn everything, from riding a bike, walking, and running to tying his shoelaces.

Having to answer the question, “why doesn’t my brain or body work like it used to?” daily is heartbreaking.

Grandview Kids showed me there is hope after a TBI, but it begins when it is taken seriously by others. Instead of hockey, they introduced him to golf. Instead of tackle football, they are teaching how to swim. He was resistant at first but is now secretly loving it. They showed him that there are different directions that can just be as fulfilling. When he wanted to give up, they simply wouldn’t let him.

Claudia's son, Reid, sitting in the hospital bed for rehabilitation. — Reid in the hospital for rehabilitation.

Claudia's son, Reid, playing wheelchair basketball with his friends. — Reid in the hospital for rehabilitation.

As his mom, seeing him feeling so lost every day is excruciating, and I wish I could trade places with him. Disabilities come in all shapes and sizes and visibilities. Yes, this injury is invisible, but the impact and effects are as lifelong as visible ones.

The good news is that with the right support and accommodations, there is light at the end of the tunnel. Next time you meet someone with a TBI, just know how much more there is behind those sweet eyes looking back at you.”

World Birth Defects Day is observed on March 3 each year and unites people and organizations working in the field of birth defects, also known as congenital anomalies, congenital disorders, or congenital conditions.

Globally, an estimated eight million newborns are born with a birth defect every year, of which around 300,000 die due to associated complications. Although it started as an annual event, this day has now become a movement for significant improvement in birth defects prevention and care.

Grandview Kids’ client, Shayaan, was born with a birth defect called Amelia. His mother and a member of the Family Engagement Team at Grandview Kids, Fadia, tells their story:

“The day my second child was born was not a day of joy or celebration for us, but a day of mourning. Our son, Shayaan, was born with a congenital anomaly called Amelia, which means he was born without both arms above the elbows.

Shayaan as a child in a painting/colouring class. — Shayaan as a child.

Shayaan learning to eat. — Shayaan as a child.

As parents of a healthy first child, we never anticipated having a child with a birth defect. Shayaan’s disability brought a multitude of questions and fears, such as how he would learn to walk, use the toilet, eat, and even get married. We went through all the stages of grief, including denial, anger, guilt, depression and finally, acceptance. It took me five months to come to terms with reality and nearly a year for my husband.

Taking Shayaan out in public was another challenge for us as we struggled to cope with the stares, whispers and hurtful comments. Despite our efforts to conceal his disability, we found that we could not. However, it was our seven-year-old son who taught us to focus on the positives. He pointed out that Shayaan still had eyes, ears and tiny feet, and we realized that we had been fixated on what our baby lacked instead of what he possessed.

Shayaan’s disabilities presented new challenges as he grew older, but we found comfort in the network of supportive parents we met through various support groups. We had genetic testing done twice, which revealed that Shayaan’s birth defect was not genetic. Not all birth defects are caused by gene mutations; some are caused by unknown reasons.

Now, at 16-years-old, Shayaan has undergone 16 surgeries and continues to experience pain, but he remains a remarkable young man with aspirations for the future. We quickly learned that he always found ways to accomplish things, and we allowed him to navigate challenges on his own. Shayaan has become an advocate and has been partnering in research to bring awareness by sharing his personal stories and his lived experiences.”