Guest Written Articles

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!

Durham Region is home to a number of high-quality, reliable licensed child care programs. With more than 300 licensed child care centres, Montessori programs, nursery schools and six home child care agencies, there are a variety of programs to choose from! This article aims to help Grandview Kids’ families make an informed decision when selecting an inclusive and welcoming child care program for their child.

Here are five tips on finding inclusive child care in the Durham Region

Illustration of three kids laying down on their stomachs with their hands on their cheeks smiling.

1. Find the type of child care that’s right for you

There are different forms of licensed child care available in the Durham Region. These include licensed child care centres and before and after-school programs, Montessori schools, nursery schools and licensed home child care. Each type of child care has its own benefits including a variety of operating hours, qualified registered early childhood educators, part-time or full-time attendance. Programs must adhere to regulations overseen by the Ministry of Education and follow How Does Learning Happen? Ontario’s pedagogy for the early years. Licensed programs are monitored annually.

Unlicensed child care also has regulations by the Ministry, including the number of children allowed in a provider’s home. Unlicensed child care Is not monitored as closely as licensed programs. Learn more by visiting the Ministry of Education’s types of child care webpage.

2. See if you qualify for child care fee subsidy

The Durham Region Children’s Services Division, Child Care Fee Subsidy Program helps families, who live in the Durham Region, with the daily cost of licensed child care. To be eligible, parents/caregivers need to be working, going to school, have a special or social need (yourself as the parent or your child) or be receiving Ontario Works. The Children’s Services Division has created an online Fee Subsidy Calculator, which uses your annual household income to estimate how much child care would cost when receiving fee subsidy. Learn more about Child Care Fee Subsidy and its application process; there is currently no wait time for eligible families. Families can receive care based on the date that care is required.

Illustration of a mom sitting cross-legged on the floor while her child colours beside her.

3. Search for licensed child care in your area

Using the Child Care Directory or the Children’s Program Locator interactive map, you can search for licensed homechild care agencies, child care centres and before-and-after school programs in your neighbourhood. The Children’s Services Division has created a video tutorial to help you find child care in your area. The Directory and Program Locator will provide information on the provider’s website, age groups offered, hours of operation, if child care fee subsidy is accepted, and if the building is accessible.

4. Speak with educators about supports available for children with special needs

In the Durham Region, licensed child care programs have the opportunity to enter into an agreement with the Children’s Services Division, which provides the provider to access funds from the Ministry of Education. This is called a Purchase of Service Agreement. Each provider must uphold quality standards known as the Durham Region Operating Criteria, including having an inclusivity statement. As such, providers with a Purchase of Service Agreement are connected to a network of Special Needs Resourcing (SNR) agencies. This network includes:

Early Learning Inclusion Consultants (ELI) and funds for Enhanced Staffingfrom Resources for Exception Children and Youth, Durham Region.
Durham Behaviour Management Services.
Surrey Place Blind Low-Vision program.
Durham Health Infant and Child Development program.
Grandview Kids’ Preschool Outreach Program.

Each licensed child care program will work with caregivers and children with special needs to formulate an Individual Support Plan (ISP). This plan will help your child transition into care, receive supports to help them fully participate in the activities offered in the program, and enjoy their time with peers and educators.

Unlicensed child care providers are not able to apply for a Purchase of Service Agreement. This means, unlicensed providers are not monitored by the Durham Region Operating Criteria and do not have the same access to SNR agencies.

Illustration of a father colouring with his daughter.

5. Ask questions

Choosing a child care program can be a difficult decision. Here are some questions that you can ask the supervisors/directors when choosing the best child care for your child:

Is your home licensed with the Ministry of Education?
Is your centre required to follow Durham Region Operating Criteria for quality assurance?
What are the qualifications and training of the educators?
What does a typical day look like?
Do the educators have experience working with children with special needs?
Does your home or centre have access to SNR services?
How do you include children with special needs in your programming?
Are educators trained in first aid or emergencies?
How can I help support my child’s needs while at child care?

For a comprehensive list of questions, check out the Ministry of Education’s common questions to ask a child care provider online tip sheet.

For Support to find child care placements, families can contact:

Resources for Exceptional Children and Youth, Durham Region, Access Coordinators – Sue or Kristen at 905 427-8862 extension 504.

Authors

This blog was written in partnership with The Regional Municipality of Durham, Children’s Services Division. The Children’s Services Division is responsible for planning, funding and managing the early learning and child care sector in the Durham Region. For more information, please visit the Children’s Services Division website.

Written by Grandview Kids CEO, Lorraine Sunstrum-Mann

Grandview Kids is grieving with Muslim staff, colleagues, clients and families.

In the wake of the horrific hate-filled murders in London, Ontario, Grandview stands beside and with Muslims across Canada in denouncing the hatred and racism directly.

Hopes, prayers, and tears will not address anti-Muslim racism.

I have pondered what I can possibly do as one person to make a difference. I have decided that I can continue to choose love over hate. I commit to denouncing racism when confronted by it, calling out racist jokes or comments, not looking the other way, noticing hatred and calling it out, standing with and for equity deserving communities.

No one is born hating. It is learned. It is radicalized. How does a 20-year-old become so filled with hatred? Certainly not overnight. I cannot imagine that there are not people who saw this hatred being fuelled and looked away. I will not look away.

I had the pleasure of serving on the PCMCH Board with Javeed Sukhera MD Ph.D., who is a Paediatric Psychiatrist out of London, Ontario. He is Muslim. He has educated me. Today he asks us not to look away from the hatred that lives within our midst. Do not give it oxygen; starve it with love and suffocate it with compassion.

Madiha was pursuing her Ph.D. in Geo-environmental Engineering at Western University. Through her writings, she aimed to promote a positive image of the Muslim community, particularly in North America and inspire and motivate the Muslim Youth. Her son now lies in a hospital bed, facing a future without his family. May her writings pave the way for him to see her dream realized: love and compassion.

– Lorraine Sunstrum-Mann, Grandview Kids CEO