Awareness Days

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:

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!

The Discovery

The Journey

The Awesome Charlie

Henley’s Story: Feeding Tube Awareness Week- February 2-8

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