Adrian Polidano

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.

Written by Grandview Kids Peer Navigator Jacki N.

For the past few summers, I have sat down with my four children and created a Summer Bucket List. We brainstormed 15 items that we wanted to do in the summer, then constructed our list as a family. Going to a splash pad, hosting a family baseball game, and visiting an ice cream truck always seem to make the chart. Each year, we check off most of the list, and I can prioritize what is important to my kids over the summer.

But I was thinking I may put a spin on it this year…

Self-care is essential. When you fill your own bucket, you are a better parent and caregiver. That is why, this summer, I have decided to create my own Self-Care Bucket List (and don’t worry, my children are still getting their Bucket lists). I am going to challenge other Grandview parents and caregivers to do the same thing.

By thinking about my wants, priorities and dreams, I am practicing self-care. Self-care replenishes our energy, focus and positivity; it ensures our needs are being met. So often, we get caught up in the important role of taking care of others that we forget about ourselves.

I recognize that taking time away for some may be difficult due to your child/ren’s needs. Self-care doesn’t need to be fancy or expensive, but it should be meaningful and customized for you. Self-care looks different for everybody. Taking time to rest, re-charge or indulge means you will have more energy and strength to take on the next step in your parenting and caregiving journey.

Let’s see how you can commit to better self-care this summer.

Start your own Summer Self-Care Bucket List:

Grab a pen and paper and write down at least five things you want to do this summer; this equates roughly to one thing every two weeks. Think of places you may want to visit, something you have been putting off, or a new food you want to try. These items can be things you do with your loved ones or on your own. They also can be free or have a cost. The only requirement is that they are what you want to do.

Once your list is complete, put it in a location that is easily visible. Take pleasure in checking off the items on your list and loving yourself.

Here are some ideas from our Grandview Kids’ Peer Navigators’ Summer Bucket Lists:

Read by the water
Ride a roller coaster
Bake a cake
Have a spa day
Visit a new place
Take a course and learn something new
Bike ride in a scenic area
Watch a thunderstorm on the porch
Attend a concert
Revisit your love of woodworking and build a bench

Get hair done
Go on a day trip with extended family
Have a night away or date-night with your spouse
Try a new restaurant
Spend the day with faraway friends/family
Walk outside every day
Try Pilates
Watch a sunset and a sunrise
Start painting again

Go on… get started! What will fill your bucket?

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!”

The Discovery

The Journey

The Awesome Charlie

Start your own Summer Self-Care Bucket List:

International Day for People with Disabilities – December 3

You Have Questions