Adrian Polidano

Spina Bifida Awareness Month is nationally observed in June. Spina Bifida is the most common congenital birth defect that causes disability. It is a condition that occurs when the spine and spinal cord do not form properly. Many babies born with Spina Bifida will also have or develop hydrocephalus, requiring a shunt to remove excess fluid from the brain. Although there is no cure, there are surgeries to help living and growing with Spina Bifida, and in-utero surgery designed to treat it if detected early enough.

Families like Weston’s share their stories to continue to raise awareness of living with Spina Bifida:

Weston is 13 years old and enjoys playing with Lego, reading Diary of a Wimpy Kid books and being a comedic teen. He loves to affectionately surprise his mom, Krystal, with a kiss on her cheek or hand, have pillow battles with his dad, Ganon, and play with his brother, Jase.

Weston was also born with Spina Bifida, having a hole in his lower back with his spinal cord sticking out. This was corrected through surgery shortly after birth. After further genetic testing prompted by having multiple anomalies, including a heart defect and eye issues, and not meeting many developmental milestones, he was officially diagnosed with Rubinstein Taybi Syndrome 2 (RTS2) in 2020. RTS2 is a rare genetic disorder, and in Weston’s case, caused by a partial gene deletion. He was later diagnosed with autism spectrum disorder (ASD) this past year.

Since Weston looks like a typical kid, it can be challenging for people to fully understand, respect his boundaries or forgive his lack of a filter due to his diagnosis. Grandview Kids has been a part of Weston and his family’s lives since he was a baby.

“Grandview will always hold a special place in our hearts. Weston feels right at home when he walks through the main site doors. He feels safe and comfortable there. The staff are always the sweetest with him too. Our family also feels the love of all the staff. Grandview has been one of our biggest support systems for the last 12 years,” says Krystal.

Weston has received services for physiotherapy (PT), recreational and occupational (OT) therapy, speech-language pathology, social work, hearing, eye and medical clinics, and a bike clinic. He also attended Grandview School for junior and senior kindergarten. Weston does not require the use of any assistive devices. In more recent years, his family has benefited from the Family Engagement Team’s inclusive events where whole-family care is at the forefront.

As a child with Spina Bifida, Weston also visits Holland Bloorview Kids Rehabilitation Hospital a few times a year to visit the Spina Bifida Clinic. In a single day, he may see multiple specialists, including a pediatrician, OT, PT, Urologist, ultrasound, social worker, and orthopedist.

As a parent of a child with physical, communication and developmental needs, it is sometimes difficult to track progress, especially when measured against peers. When Krystal thinks back on how far Weston has truly come, it is a marvel to wonder at. “He went from zero words to talking sentences while attending Grandview School and receiving weekly therapy and continued support from special education teachers,” says Krystal. “He still walks robotically, and his reflexes will always be an issue, but he is getting better. Weston has some physical barriers that he may never overcome just because of his body makeup. But, continuing to receive blocks of therapy and support from Grandview helps.”

 How long have you been volunteering at Grandview Kids?

I began volunteering at Grandview Kids in 2017 when I retired from teaching. I had had the privilege of teaching children with physical and intellectual challenges for the last 15 years of my career and many of my students had a connection to Grandview Kids. I also worked with a variety of professionals from Grandview Kids who visited my classroom and shared their expertise so that my team and I could develop and implement academic and life skills that would best suit the needs of our students. I had nothing but positive feelings towards Grandview Kids, and I thought it might be a good fit for volunteering.

What is the best part of volunteering at Grandview Kids for you?

I thought I knew a lot about Grandview Kids from my teaching days, but I had no idea of the scope and depth of the Grandview team or the many amazing children who benefit from their work.

I knew about Speech and Language Pathology, Occupational Therapy, and Physical Therapy, but perhaps my biggest revelation was learning about Recreational Therapy. I love participating in the many recreational therapy group sessions, such as music, movement, and play, and summer camps like bike camp.

I often say that I receive far more from Grandview Kids than I give. The hugs, smiles, and high-fives I get from the kids I interact with and play with are what make me want to come back again and again.

Who inspires you to volunteer or give back?

My son Daniel is perhaps my greatest inspiration to volunteer. Daniel was born with very complex physical and intellectual challenges. We had many therapists in our lives who helped us in so many ways to help Daniel grow and develop to his greatest potential. He passed away as a young child, but had he been able to grow up, I know Grandview Kids would have been part of our lives for sure. By volunteering, I keep Daniel’s memory alive within me and spend time with kids who are as beautiful and special to their families as Daniel was to me.

What would you say to someone who was thinking about volunteering at Grandview Kids?

To anyone who might be thinking of volunteering, I would heartily encourage them to come to Grandview Kids. It is a place filled with hope and positivity, and after you have seen the smiles on the faces of the kids and their parents, your heart will be full.

Jacki N. is a Peer Navigator on the Family Engagement Team at Grandview Kids. Her role is to support the Family Leader programs, provide families with support after a diagnosis, and show the importance of self-care. She is a mom of four. Her second son was born with a rare genetic seizure disorder, and it is her mission to allow her son’s diagnosis to open and not close doors.

Summer is here, so let’s go on a road trip. Here’s what I have learned from driving hours with my four kids:

I have always loved travelling. As a child, I spent countless March breaks driving backward in my parents’ station wagon across the USA. After my second son started having seizures, I became mentally locked into our home, and my love for travel took a necessary break. As time passed and we became more comfortable with our son’s medical needs, we started to slowly venture out and take road trips to some of our favourite places, Bay of Quinte, Scugog and the Kawarthas. March break 2014, we decided to cross the border and head south for Myrtle Beach on the longest 13-hour road trip. Honestly, that drive was a disaster; we were under-prepared for what driving with a 6, 3 and 6-month-old would involve. Let’s put it this way: it took us so long to get there that we decided it would be easier to drive through the night to get home, and we have not done that since. It did not deter me, though; we have taken many road trips all over the world, and the following are some tips that have made our trips enjoyable and memorable.

First off, preparation is key. It does not matter how far you are travelling. A good packing list and an organized, packed vehicle will set you up for success. I have several different packing lists on my phone that I reuse all the time. Baseball tournaments, camping trips, and Florida vacations all require me to pack different items, and through the years, I have added items to each list that I wish I had brought. Doing anything with 4 children requires bringing items, and without a list, I would certainly get distracted and forget something. For longer trips, make sure wheelchairs, strollers, and medications are easy to access. I also use a drink caddy that fits all our water bottles so they are all in one location, and I can monitor fluid intake. A 3-hour drive will take much longer when you have to stop multiple times for washroom breaks.

Speaking of breaks, plan for them. If travelling with an older child who wears diapers or needs assistance in the washroom, I highly recommend using ON route stops. They have companion washrooms, plenty of accessible parking, and are open 24/7, and you do not have to spend any extra time accessing them as they are right off HWY 401. Use www.onroute.ca for locations and what is available at each stop. Our family rule is when we stop, everyone uses the washroom; this has saved us travelling time. If travelling into the USA we use Rest stops, they are located right of the highway and have accessible washrooms and picnic tables. These locations allow us to stretch our legs and have a snack. Plan those breaks into your travel time, I have learned over the years it may be better to stop before the 4-year-old urgently needs to use the potty.

My children love snacks, so for road trips, I create snack bags for them. Each child has a labelled bag with multiple snacks in it. When it is snack time, I hand them the bag, and they can choose something to eat. I learned the hard way when I gave my then-8-year-old control of his snack bag on one vacation. Snack bags have prevented extra stops and ensure they will be getting a variety of snacks (healthy and non) over the trip (sometimes our destination is 22 hours away). Pro tip, also pack and bring your lunch. We always bring our lunch, it is much quicker, healthier and cheaper to bring. Nowadays, a stop at Mcdonald’s costs $50 for a family of 6 and takes an hour by the time you order, eat, and use the washrooms, so I have learned sandwiches or a cheese and cracker platter are much easier and save us money. During warm weather, this is more doable as Rest stops often have picnic tables, and this gives my children a safe place to move around, and fresh air does us all good.

Lastly, when we back out of the driveway, the journey begins. Some of my favourite memories are all of us in the vehicle. We are laughing, playing games and singing our hearts out to “Old Country Road” while driving through the mountains of West Virginia. We reward good car behaviour with prizes and challenge our children to spot the first Target store, Bald Eagle or palm tree. When we stop for a break, we switch seats so our children get to sit next to a different sibling. We have different playlists of songs for different road trips that we have taken, a baseball playlist, a Florida playlist and even a birding playlist. When I hear the song “Gone Country,” I think of our drive to Tennessee, and “Cruise” always makes me laugh as I reminisce on Colton singing along down the highway with windows open. The best part is when my kids hear one of the songs, their eyes light up!

This summer, get in the car, hop on a bus or train and take a day to explore. It will be good for your soul. Happy road-tripping!

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Something new is flying into Grandview Kids this Fall. Two Ontario Sculptors, Francis Muscat and Fly Freeman, are creating a suspended artwork for our entrance at our new headquarters. The artwork will include beautiful, fantastical bugs emerging from cocoons and filling the upper spaces of the area (see the artistic rendering below). But, these artists need the help of Grandview Kids’ creative community!

The bugs are going to be works of imagination. The artists want each bug to have a story, to have a purpose – a unique personality and appearance. Help us create the bugs. Help us build their stories. Your ideas will inspire this amazing, lasting piece of artwork in our new headquarters.

There are a few ways Grandview Kids clients and families can get involved.

From home

Draw a bug! Think about what you bug might look like – all the bugs are flying bugs, so your bugs should have wings, and most bugs have 6 legs, 2 eyes, 2 antenna, and a body – but these are just suggestions. Use your imagination. Download the template or pick up a printed copy at any of our Grandview Kids locations.
Colour a bug drawing! Drawn by Francis and Fly, but coloured by you. We have some funky designs of butterflies and beetles. All you have to do is supply the colour! Download the templates or pick up a printed copy at any of our Grandview Kids locations.
To submit: Take a photo of your finished drawings and email to newbuild@grandviewkids.ca by May 31, 2024.

In-person workshop

Build your own bug workshop (space limited): A chance to build a small bug and meet the sculptors. We will have all that you need to make your own, unique bug. Also, you can see how the sculptors are going to make the big butterfly and beetle bugs for the new building. Space is limited, so registration is required.
- Date: Wednesday, May 29
- Location: Grandview Kids Main Site 600 Townline Rd S, Oshawa
- Time: 4:30 to 7:30 p.m. – Drop in any time that evening (registration required)
- All ages welcome, but please register each family member.

Register here!

We can’t wait to see the amazing ideas and innovation of the Grandview Kids community!

In May, we acknowledge Mental Health Awareness Month, Asian Heritage Month, Neurofibromatosis Awareness Month, Food Allergy Awareness Month, Vision Health Month, National Child and Youth Mental Health Day, GBA (Gender Bias Analysis) Plus Awareness Week, World Lupus Day, Apraxia Awareness Day, International Day Against Homophobia, Transphobia & Biphobia, and Global Accessibility Awareness Day. Read more about each date of significance below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

Mental Health Awareness Month

May is Mental Health Awareness Month, and Mental Health Week is from May 6 to 12. Since 1951, the Canadian Mental Health Association (CMHA) has observed a week in May to continue building awareness and providing education about mental health within our communities.

For 2024, CMHA is focusing on kindness and compassion. Powerful tools to help ourselves and others connect and heal. Compassion is defined as an emotional response to the struggles of others combined with a real, authentic desire to help lessen their suffering*. While being kind and compassionate to others is healing to both those we emotionally want to support, there is also great benefit in self-compassion. The practice of self-compassion – CMHA-MHW2024.pdf

Benefits of kindness and compassion:

It increases our “feel good” hormone, oxytocin.
It is contagious; if we see others showing compassion or kindness, we are encouraged to do the same, and that helps us have a more positive outlook.
It can also have a positive impact on our mood and help lift feelings of depression**.

Asian Heritage Month

May is Asian Heritage Month in Canada, recognizing the rich cultural tapestry and significant contributions of Asian communities to the nation’s history and development. This month serves as an opportunity to delve into the diverse heritage of Asian Canadians, spanning from their historical struggles against discrimination to their contemporary achievements across various spheres of society, such as arts, sports and social justice.

With the 2024 theme of “Preserving the Past, Embracing the Future: Amplifying Asian Canadian Legacy,” the focus extends beyond commemoration to embracing optimism and acknowledging the ongoing journey towards inclusivity and equality. Through celebrating traditional and contemporary cultural expressions and understanding the historical struggles and triumphs of Asian Canadians, Asian Heritage Month invites Canadians to reflect on their integral role in shaping the fabric of Canadian society.

Neurofibromatosis Awareness Month

May is Neurofibromatosis Awareness Month, and May 17 is Neurofibromatosis Awareness Day. Our Peer Navigator, Fadia O., wanted to pay tribute to her friend’s son Hamza by sharing his story. He has been battling Neurofibromatosis type 1 (NF1) since birth, and I want to bring awareness to this condition, which profoundly impacts him and his family and those who have this rare disorder. NF1 is a neurological and genetic disorder which appears as light brown café au lait spots, freckles in the armpits or groin, tiny eye iris bumps, and soft skin or underskin tumours. While these tumours are generally benign, NF1 can also cause abnormal bone growth, leading to conditions like scoliosis or bowlegs, as well as optic nerve tumours. Children with NF1 often experience unique learning challenges, and may have a larger head size and shorter stature compared to their peers.

Witnessing Hamza’s journey, who has nerve tumours, bone anomalies, declining health and now a dependency on breathing machines for the past four months, has deeply moved me. Surrounded by his worried yet hopeful family, he shows immense bravery. NF1 can lead to complications such as hearing loss, cognitive difficulties, cardiovascular issues, vision impairment, and intense pain, all of which this courageous young man is enduring.

This story is shared not only to raise awareness but also to honour the hope and spirit of Hamza, his family, and the many others living with NF1. It highlights the urgent need for advanced research, comprehensive understanding, and robust support systems for those navigating the complexities of this condition. Amidst these struggles, hope keeps them driven toward finding a future where scientific breakthroughs and new possibilities await every family, including Hamza’s.

Food Allergy Awareness Month

May is Food Allergy Awareness Month, and this is an issue that impacts nearly one in two Canadian households. Food allergy is one of the leading causes of potentially life-threatening anaphylactic reactions and a public health concern in Canada, especially among children.

Over 3 million Canadians are affected by food allergies; that’s 7.5% of the population. The impact of food allergy is far greater, with an estimated 50% of households being either directly or indirectly affected by food allergy. As there is no way of predicting how severe an allergic reaction may be and no known cure for food allergy, avoiding allergenic food is required to prevent a reaction.

Vision Health Month

Vision Health Month is an invaluable opportunity to raise awareness about the importance of eye health and vision care. Throughout this month, professionals aim to educate individuals about the significance of regular eye exams, early detection of eye conditions, and the adoption of healthy habits to preserve vision. With millions of people worldwide affected by preventable vision impairment, Vision Health Month serves as a crucial reminder to prioritize our eye health and take proactive steps to safeguard our vision for a lifetime of clarity and well-being.

1 in 7 Canadians develop serious eye disease in their lifetime, and the Canadian Association of Optometrists advocates that 75% of vision loss is preventable or treatable with proper care. Through advocacy, outreach, and community engagement, Vision Health Month strives to empower individuals to make informed choices about their eye health and inspire action toward a world where everyone has access to quality eye care.

May 7: National Child and Youth Mental Health Day

The purpose of National Child and Youth Mental Health Day is to foster connections between young people and the adults in their lives who care about them. Caring, connected and supportive conversations can have a big positive impact on mental health and the well-being of children.

There is no greater cause than helping a child and saving them from suffering alone. This can protect them from living with any long-lasting crippling mental conditions. A mental health check is important for everyone, not just children. Some conditions can ruin the quality of life if not treated early. Have meaningful conversations with the youth in your life surrounding ways to support their mental health better and create an open and honest dialogue. By celebrating this day, we are effectively raising awareness to make more people undergo treatment. The general support for children will also increase.

May 6-10: GBA (Gender Bias Analysis) Plus Awareness Week

GBA Plus Awareness Week was first launched in 2012 to increase understanding among federal public servants of the relevance of GBA Plus to their work. The Government of Canada defines the term “gender-based analysis plus” as “an analytical process used to assess how diverse groups of women, men and people of all genders may experience policies, programs and initiatives. The “plus” acknowledges that GBA goes beyond biological (sex) and socio-cultural (gender) differences. We all have multiple identity factors that intersect to make us who we are; GBA+ considers many other identity factors, like race, ethnicity, religion, age and mental or physical disability.”

The theme for this year is “Intersectionality in Action: Moving Forward on an Enhanced Approach to GBA Plus.” This supports the process of advancing equality and inclusion for everyone in Canada. Events throughout GBA Plus Awareness Week help develop and support inclusive and responsive policies, programs, services, and decision-making that affect the well-being of all Canadians.

May 10: World Lupus Day

Lupus is a serious, life-altering, and fatal disease that requires in-depth understanding and support for the affected persons. Lupus is an inflammatory disease/autoimmune disease that occurs when the body system attacks its own tissues and organs. Inflammation resulting from this may affect various body organs, including the skin, kidneys, brain, blood cells, lungs, heart and joints. To help raise awareness about lupus, you might consider wearing purple and sharing lupus facts on social media. One interesting fact is that while anyone can develop lupus, 90% of people with lupus are women.

The World Lupus Federation encourages people to share the ‘Lupus Awareness Toolkit’, which includes more specific ways to spread awareness. Some of these are:

Awareness and Advocacy:

Contact local officially to ask them to light up a landmark, monument or building the colour purple (the colour supporting Lupus Awareness Day)

Media Tools:

Share stories and raise the national profile of Lupus by posting on social media

Government Proclamation:

Reach out to government officials to raise awareness of important priorities surrounding Lupus, such as the need for improved patient care.

Signs and Symptoms:

Understanding the common signs and symptoms of Lupus is critical to raising awareness. For more information, refer to the list of symptoms and risk factors on the World Lupus website.

May 14: Apraxia Awareness Day

Childhood Apraxia of Speech (CAS) is a rare but severe motor speech disorder that affects less than 1% of children. Children with Apraxia often have difficulty speaking because they have challenges learning or carrying out the complex sequenced movements necessary for intelligible speech (e.g., moving their jaw, lips, or tongue). This is a day to spread awareness of what this disorder means and how Speech-Language pathologists can best support the child and family with appropriate early intervention!

Children with CAS may also require multidisciplinary support, not only for their speech challenges but their fine and gross motor movement. Frequent therapy, along with providing ways to communicate while learning to speak clearly (e.g., Alternative and Augmentative Communication), are helpful tools to support our clients and their families. Every child deserves a voice! Visit Apraxia Awareness Day – Childhood Apraxia of Speech for more information.

May 17: International Day Against Homophobia, Transphobia & Biphobia

The International Day Against Homophobia, Transphobia and Biphobia holds significant importance as a global initiative established in 2004 to spotlight the pervasive violence and discrimination endured by individuals across diverse sexual orientations, gender identities and expressions, as well as sex characteristics. Managed collaboratively by various regional and thematic networks, the day is observed in over 130 countries, despite prevailing legal barriers in many. Its recognition extends from grassroots initiatives to official endorsements by states, international bodies like the European Parliament and numerous local authorities. This year’s theme, “Together Always: United in Diversity,” underscores the collective effort to combat discrimination and promote inclusivity. The selection of May 17th commemorates the World Health Organization’s (WHO) landmark decision in 1990 to remove homosexuality from its list of mental disorders, symbolizing a global call to action for policymakers, media, corporations and society at large to confront the challenges faced by marginalized communities.

Visit May17.org to learn more.

May 18: Global Accessibility Awareness Day

The third Thursday in May each year marks Global Accessibility Awareness Day, which falls on May 18 this year. Created in California in 2011 by a web developer, the awareness day quickly grew in popularity and was formally recognized by the technology sector a year later. This awareness day provides the opportunity to recognize the importance of increasing the use of accessible features in technology, particularly implementing accessible features into websites and computer programs.

Here in Ontario, companies are required by law through the Accessibility for Ontarians With Disabilities Act to ensure that their websites and social media accounts align with the requirements set out by the AODA. If you are interested in learning more about how to make your social media more accessible, then be sure to check out this video for some tips and tricks. – https://youtu.be/MKTpDOccHzg?si=nGpG9BfR2mfBWBEY

In May, we acknowledge Cinco de Mayo, Vesak and Trinity Sunday. Read more about each holiday/celebration below, written by members of our Inclusivity, Diversity, Equity and Accessibility (IDEA) Committee.

May 5: Cinco de Mayo

Cinco de Mayo, or the fifth of May, is a holiday that celebrates the date of the Mexican army’s May 5, 1862, victory over France at the Battle of Puebla during the Franco-Mexican War. The day, which falls on Sunday, May 5, 2024, is also known as Battle of Puebla Day. While it is a relatively minor holiday in Mexico, in other countries, Cinco de Mayo has evolved into a commemoration of Mexican culture and heritage, particularly in areas with large Mexican-American populations.

Cinco de Mayo is widely interpreted as a celebration of Mexican culture and heritage, particularly in areas with substantial Mexican-American populations. On Cinco de Mayo, revellers mark the occasion with parades, parties, mariachi music, Mexican folk dancing and traditional foods such as tacos and mole poblano. Some of the largest festivals are held in Los Angeles, Chicago and Houston.

May 23: Vesak

Vesak, or the Day of the Full Moon in May, is the most sacred day to millions of Buddhists around the world. Two and a half millennia ago, in the year 623 B.C., the Buddha was born on the Day of Vesak. On the Day of Vesak, the Buddha attained enlightenment and passed away in his eightieth year.

The exact date of the Day of Vesak is based on Asian lunisolar calendars and is primarily celebrated in Vaisakha, a month of both the Buddhist and Hindu calendars. Buddhism is one of the oldest religions in the world, and millions of people around the world follow the teachings of Buddha. On Vesak, followers assemble in their temples before dawn for the ceremonial hoisting of the Buddhist flag. Followers will also sing hymns in praise of the holy triple gem: the Buddha, the Dharma (his teachings), and the Sangha (his disciples).

May 26: Trinity Sunday

This year’s Trinity Sunday falls on May 26. Trinity Sunday is a Christian festival widely celebrated by Western Churches. It falls on the first Sunday after Pentecost, which is the 50th day after Easter. Trinity Sunday, in its essence, celebrates the mystery of faith and unity on and of the Holy Trinity: the Father, the Son, and the Holy Spirit. The Trinity is not mentioned in Scripture, but Christians belonging to Western Churches celebrate it and God’s love for humans because of their faith and utmost appreciation for the Trinity itself. Many Western Churches celebrate the occasion with symbols of fire, wind, and a dove.