Guest Written Articles

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.

Written by Grandview Kids parent, Laura

Kabuki syndrome is a rare genetic disorder affecting 1 of every 32,000 births worldwide. Children with Kabuki Syndrome may experience a variety of symptoms, including mild to moderate intellectual impairment, growth delays, low muscle tone, feeding issues, swallowing difficulties, heart defects, cleft palate or other mouth issues, skeletal abnormalities, including hip dysplasia, visual and hearing impairments, autistic behavioural challenges, developmental delay and possible seizures. It is a spectrum disorder, meaning that every child is affected differently, like many genetic disorders. 

Henley was born 5 lbs 19 oz with both of his hips dislocated (hip dysplasia) and with two sacral dimples, an ear pit and was hard to feed formula or breast milk.  We were told that the signs may be a genetic disorder and something we should test for. He had low blood sugar and, for a short period of time, was in the Neonatal Intensive Care Unit (NICU), where my husband and I visited him and tried to do feeds, which never went very well. 

At 2 months old, he was small and still looked like a newborn. He had been vomiting after any formula he managed to ingest and had been diagnosed with reflux. He was placed on two medications for this. He was deemed “failure to thrive” and was admitted to the hospital for daily weight checks, observation and to have a nasogastric (NG) tube inserted for feedings. At age 7 months, he had an inguinal hernia repair, which expedited Henley’s access to a gastrostomy tube (G tube) for feedings. As a mom with a nursing background, I had a really hard time with both, but especially the G tube. It felt so permanent. I felt like I had failed him and didn’t want this for my child. 

Grandview Kids has been a big part of our journey and is there for every step. Our social worker here really helped talk us through the diagnosis, the grief associated with this and how it was okay to have all the feelings while still being proud of how far you’ve come from the beginning. 

While we struggled with all of this, we underwent testing for genetic disorders. There are two mutations that cause Kabuki syndrome: KMT2D & KDM6A. Weeks later, it came back, and Henley tested positive for the KMT-2D gene. Henley had Kabuki syndrome. After seeing the geneticist, we were referred for early intervention services at Grandview Kids, including participation in the Complex Care Program, delivered in partnership with The Hospital for Sick Children (SickKids), Grandview Kids, Lakeridge Health and the Ontario Health at Home, Central East.

Prior to Henley’s Kabuki syndrome diagnosis, we had already been seeing different specialists at SickKids, primarily orthopaedics, having biweekly ultrasounds and then hip x-rays as he grew. He was placed in a leg brace so we couldn’t bathe or put our baby in pants for months. It was hard, but we were hopeful this would help. It didn’t. 

We had Grandview Kids for support through the Complex Care Program, occupational therapy, speech-language pathology, physiotherapy, dietetics, feeding therapy and social work consults throughout Henley’s hurdles. We also travelled to SickKids for many specialist appointments. 

For Henley, Kabuki syndrome involved mostly feeding problems, hip dysplasia, low muscle tone as a baby and developmental delay. He missed most milestones. After a swallowing assessment, he was discovered to be mildly aspirating fluids. At this time, we tried to thicken fluids and, as he aged, continued to do swallowing assessment at SickKids radiology, which eventually he was no longer having tracheal aspirations, so we could “try to feed.” 

This was terrifying and exciting at the same time. My baby hadn’t had bottles or formula. He started having thickened water and eventually purées. With his G Tube feeds, we would give him opportunities to eat/taste and play orally with food. We did a lot of it by trial and error and just kept going, even when I was nervous. It was a long road, but at 2 years 7 months old, Henley became a feeding tube graduate and was discharged from Grandview Kids’ Complex Care Program. We know this isn’t everyone’s journey, as many Kabuki kids we follow online still have feeding tubes and feeding struggles.

At age 1 year 10 months, Henley also underwent a lengthy 5-hour surgery for his hip. He had hip dysplasia surgery with a pelvic osteotomy (t pins inserted into the hip for proper angle and alignment). He was in a full body cast from his chest down to his ankle on one side, including a “window” for his G tube. We had to watch the cast wasn’t too tight, and we lived on a mattress in our living room for 6+ weeks. After surgery, Henley celebrated his 2nd birthday fresh out of a cast with limited movement and spent his day on the couch. 

He had to learn to sit up again at age 2. He gained strength and eventually walked with his shopping cart and then independently. He couldn’t have physiotherapy for months after surgery, as his surgeon wanted him to access this care when he was ready for it. Henley is now walking independently and can walk up stairs with assistance. He is eating orally–a lot of “beige foods” and carbs–but he’s eating! His favourite foods are strawberries, popsicles, pizza and cheese and crackers. 

The entire journey, especially in the early days, was a blur. He has been through so much and come so far. Henley is now 3 years 5 months old, has started Nursery School and is thriving. He stims a lot with his autism spectrum disorder (ASD) and seems to enjoy the routine. We are amazed every day by our boy. He is non-verbal, developmentally delayed and has had a diagnosis of autism received through a developmental paediatrician at Grandview Kids. 

We are so proud of how far Henley’s come, especially when we share our story. I hope this helps anyone with a new genetic diagnosis, including Kabuki syndrome. You are not alone, and my best advice would be to reach out online, find support groups or others going through similar experiences, whatever that may be. 

To show your support, I encourage you to wear green on October 23rd for Kabuki Syndrome Awareness Day!

Written by Peer Navigator and Grandview Kids parent, Danielle P.

When all three of my children were diagnosed with Autism Spectrum Disorder (ASD), it changed my life in a way I did not expect. My older two children hit every milestone early until they experienced a severe significant regression. They stopped talking, playing, looking at me and responding to their names. They started making repetitive movements that I now know are stims. A year after their diagnosis, my youngest child started exhibiting similar symptoms. I felt like a failure, and I missed who my babies were before they regressed.

By 2018, I found myself divorced with a 1-year-old, a 2-year-old and a 3-year-old, all diagnosed with ASD. I chose to lean into my grief and decided to observe my feelings without judgment. I cried. I journalled. I got therapy. I found respite workers and made self-care a priority. It was lonely until I surrounded myself with different friends and parents who also had children with disabilities. I started following disabled content creators online. I started being more open with my vulnerabilities. Slowly, I noticed that having three children with ASD was not actually as awful as I originally thought. As I allowed my world to expand, I realized a few important things about why their diagnoses felt so devastating in the beginning.

I’m ashamed to say that I pitied people with disabilities. I didn’t want my kids to be associated with “those type of people”. I wanted my kids to be “normal” because I thought that any deviation was bad. For the first time in my life, I noticed and addressed my own ableism. Once I let go of that way of thinking, I was able to explore this beautiful new community we belong to.

I had to let go of the expectations I had of my children. Some parents hope their children will excel in sports, pursue higher education, or have a specific career. As parents of kids with disabilities, we have the privilege of letting go of our expectations much sooner than other parents might. Among many other expectations, I wanted my kids to talk, look at me and be potty trained. I had to let go of those expectations and be open to the life my children were capable of and wanted for themselves. I had to learn to accept that my children for who they are.

My children are now school-aged, and I have a new partner who is very involved. My older two children still don’t speak but they are learning to use AAC devices. Pullups are still a part of our lives, but they may not be forever. My kids’ friendships may look different from the types of friends I had growing up, but we have found our people. We presume competence while providing support. We allow THEM to tell us who they are and what they want to do with their lives. I thought my life was over when my kids were diagnosed, and in some ways, it was. That life had to end for a new life to be discovered.

Written by Grandview Kids Summer Marketing Assistant, Ayanna S.

September serves as National Sickle Cell Awareness Month in the United States of America. Sickle Cell Awareness Month aims to raise awareness and support research about the disease, and although it’s not officially recognized here in Canada, many sickle cell advocacy groups celebrate the month regardless. Sickle cell affects the oxygen-carrying protein hemoglobin, which is found in red blood cells. This results in stiff, sickled red blood cells that have difficulty flowing through blood vessels.

When my parents were told I had sickle cell disease when I was just six months old, they probably couldn’t predict the profound impact the inherited blood disorder would have on my life. Sickle cell can result in a wide variety of health problems, including anemia, fatigue, swelling in the hands and feet, and attacks of pain called “sickle cell crisis.” Those with sickle cell are also more vulnerable to strokes, bacterial infections, and organ damage due to lack of blood flow.

From a very early age, I took steps to mitigate the impact of sickle cell disease. I always drank plenty of water, ate healthy, and avoided extremely cold environments that might trigger a pain crisis. Like many other people with sickle cell, I depended on medications such as folic acid, antibiotics, and hydroxyurea to keep my hemoglobin levels high and boost my immune system. Throughout my childhood, I received care from the dedicated red blood cell clinic at the Hospital for Sick Children in Toronto. It was there that I encountered children who also had sickle cell for the first time. I realized some of these children had more severe cases of sickle cell and required more medical intervention such as blood transfusions, surgery, and frequent long hospital stays away from home.

When my sister Rhea, who is nine years younger than me, was young, she also had more sickle-cell-related complications than I did. As a result, she underwent monthly blood transfusions, frequent trips to the hospital, and even surgery to remove her spleen when she was just two years old. My sister, now fifteen, lives a life relatively free from sickle cell complications due to the care she receives at SickKids, but I still remember the impact sickle cell had on her when she was younger. Many children with sickle cell miss important days, milestones, or opportunities due to sickle cell complications. Weeks spent at the hospital are weeks without friends, school, or extracurricular activities. It can be a very isolating experience, and I often struggled to explain the full impact of sickle cell to my friends and teachers. To many of my peers, I simply didn’t “look” sick or like someone who would need health accommodations. Education about sickle cell disease is limited, and many people are ignorant about the disease.

This is why it’s important to support sickle cell awareness and social support for those with sickle cell disease. Because sickle cell mainly impacts people who are of African, Caribbean, Middle Eastern, Mediterranean, and Indian descent, we also face challenges like discrimination and medical racism that hurt our ability to receive proper care. Groups such as the Sickle Cell Awareness Group of Ontario and Camp Jumoke help fight the stigma against sickle cell and boost opportunities for Ontarians with sickle cell.

Today, I am twenty-three years old and living a happy and healthy life with sickle cell disease. I still sometimes suffer from complications and pain, but I have been helped greatly by the hematology experts at SickKids and Toronto General Hospitals. They are dedicated to helping sickle cell patients live full and healthy lives. Proper support and care make a world of difference for those living with a disability. Happy Sickle Cell Awareness Month!

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?

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!

Celebrating Black History Month!

Start your own Summer Self-Care Bucket List:

World Birth Defects Day – Fadia and Shayaan’s Story

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