Jooay's Guide to Online Resources for Kids with Disabilities: Staying Connected in the Time of Coronavirus

As the repercussions of the Coronavirus outbreak continue to reverberate across Canada, we are all adapting to our different realities as best we can. In many areas, schools and institutions have closed or are operating at reduced capacity, and local, provincial, and federal governments are recommending that people shelter in place whenever possible. 

For families of children with disabilities and complex care needs, staying at home may be more challenging. You may be now administering care that was distributed between the school, rehab centers, and respite care all on your own.  

On a more positive front, you may be noticing that our community is growing stronger and closer. Virtual communities, activities, and connections are taking on growing importance.  

““It is bringing us back to what is important: connection and attention, which is something that our daily lives don’t allow for given all of our overwhelming schedules, therapies, and appointments,” says Joanne Charron-Yannakis. “Instead of doing everything for our kids we can now do everything with our kids, which is just as important—even more important—than academics, therapies, and all other multitude of things we need to do as special needs parents for our children.” ”

The Jooay App lists adapted and inclusive leisure activities across Canada. All of the Jooay activities are currently not available as we maintain social distance, so the Jooay community wanted to assist virtually to share some resources that can help families, children, and youth to keep participating in leisure activities that are important for them in the new circumstances, and to connect with others to find a community of support in this difficult time.   

Ability Online 
Founded in 1990, Ability Online is a Canadian social media technology platform for young people with disabilities to connect to each other and the world around them. It offers a free, secure, online environment where children and youth can chat, share experiences, and talk about how they are coping.  

Community Connecting to Play 
The Jooay team also maintains the Community Connecting to Play. In this Facebook (private) group (just ask to join if you’re not already in!), the team is gathering and posting activities and ideas of what to do at home, including resources for explaining the coronavirus situation to your children, virtual story time, or even suggestions for a stay-in movie night! We invite you to join the group now to take a look, become part of this community, and share your best strategies and other resources with others. 

We are also happy to share resources from the Canadian Paediatric Society and Children’s Healthcare Canada that include various links to topics that can help at this time, including for children with special health needs. 

If you are at home with your children, we want to know: What are some of your go-to activities to keep your kids occupied? Let us know, so we can stay connected! 

My family’s adventure to the United Nations to share our view on rights-based approaches to disability in Canada

By Susan Cosgrove

When my son Liam was three years old he couldn’t carry a conversation, exist in a crowd without getting overwhelmed, or interact with new people without panic. So much of my time and energy was consumed with accepting the things he could not do that I just couldn’t imagine that we would welcome his 15th birthday together, celebrating the biggest accomplishment of his life.

Attending the Civil Society Forum

The United Nations Convention of the Rights of Persons with Disability (CRPD) is an international law that protects and promotes the rights of people with disability; made up of global guiding principles to ensure that people with disability can access the same rights and opportunities as their fellow citizens. One hundred and seventy-seven (177) countries have agreed to the convention – and Canada is one of them.

Two weeks ago, the 11th annual Conference of the States Parties to the Convention on the Rights of Persons with Disabilities took place at the United Nations Headquarters in New York City. Attended by both National governments and civil society organizations from around the globe, the goal of the event was to share knowledge about how people with disability are living with their rights in participating countries.

This brings us to my proudest experience as Liam’s mom. Over the past decade Liam has learned how to use his unique skills and interests to become an ambassador for children with disabilities. He has shared his thoughts with doctors, families, health care administrators, donors and policy makers in Toronto. When we were invited to participate together on a panel in New York City discussing rights-based approaches to disability in Canada, we did a happy little dance together.

Liam with Kirsty Duncan, Minister of Science and Minister of Sport and Persons with Disabilities

As a team, Liam and I have a lot of experience to draw on. I have been engaged in research for years as an advisor, co-investigator and spokesperson. I recently began working for the CHILD-BRIGHT Network as their first Parent Mentor. As I begin this role I am focused on learning from the parents involved in the network about how they have engaged in the different projects and programs, and about their hopes for the future of research. I plan to build on these learnings to help connect and inform parents. And it is through this role that I had the opportunity to join the group attending this important landmark event.

Liam has come into his own thanks, in part, to the research world. He began as an enthusiastic participant who loved the activities and personalities of the researchers and health care providers he interacted with. We quickly discovered that he was a skilled ambassador who uses his unique charms to share his thoughts with policy makers and politicians. The opportunity to do so on such a grand scale – at the United Nations – was Liam’s dream come true.

For such a young person, Liam didn’t take the opportunity to influence global leaders lightly. He was there to show them what was possible for a young person when his rights were respected and enforced and to share his hopes for his adult life. He talked about his rights as a Canadian youth with disability and his hopes for the future. He dreams of one day being a mechanic, with a family and a home. He knows that he will require more assistance and support than his non-disabled peers for his entire life. He is willing to put in that extra effort and plans on using his future voting rights to encourage governments to match his efforts with their support. That was his message, that was his voice.

Liam takes Manhattan

By being engaged in research in so many capacities over the years, I have learned a lot about the power of lived experiences. It’s as important to bring first-hand perspectives to every aspect of health care and policy development, as it is to bring them to research. Our personal stories keep goals in perspective and remind those in positions of influence why their decisions matter. It’s imperative for both families and professionals to understand the power of engagement. In the past, disability research and policy relied heavily on numbers, trends, reports and data, but lacked the human influence of those living with disability. But now people with disability and their families are becoming an essential part of the team and having direct influence on their own futures. And this is what we felt by being in this global forum. We joined other people with disabilities from all corners of the world: families, youth, adults, side by side with government officials and UN members to share our perspectives and discuss what we think and know is important.

Families may read this and think “Well, I’ve never been invited to the UN and I don’t like public speaking – so this isn’t something I can do.” But influence happens on many levels and from all types of people. It can be as simple as being informed and exercising your right to vote for a government that promotes the well-being of people of all abilities. It could be sharing information with other parents, your child’s school or people in your neighbourhood about the existence of the Convention of the Rights of Persons with Disability (CRPD). In reality, by raising children with disability who are informed of their rights and how to advocate for themselves, we are taking the first steps towards creating a more inclusive future for them.

Rachel Martens’ presentation

At the UN we were part of a delegation that included scientists and policy makers, Liam and me, another youth delegate and another parent. Rachel Martens is a mom from Alberta who is raising a 12-year-old son with multiple disabilities. She works with the Kids Brain Health Network as a Parent Engagement Facilitator for the online group “Parents Partnering in Research”. In her writing on our experience Rachel asks an important question that relates back to a policy brief compiled by two of our team members: “What if the CRPD was the start to the conversation to ensure that Canadian children living with a disability get the best start in life?" 

Such was a question posed by Dr. Keiko Shikako-Thomas and Dr. Jonathan Lai in the research brief and research presentation they gave during the Canadian event at the UN conference. The event brought together a partnership between two pan-Canadian networks focused on brain-based disabilities: CHILD-BRIGHT Network and the Kids Brain Health Network to facilitate the opportunity to share this research work and more importantly: to bring the voices of parents and youth into this arena. I am thankful for having been provided an opportunity to be a part of the delegation that went to share what we are learning through research on the rights of children with disabilities, and through our everyday lived experiences in Canada. The Canadian event was hosted in partnership with the Government of Canada through the Canadian Minister of Disability and Sports and Science, and I was privileged to be able to share a glimpse into what life is like parenting my son with multiple disabilities and what I felt about his rights as a Canadian citizen.

Our Team (from left to right: Rachel Martens, Nikolas Harris, Kirsty Duncan, Keiko Shikako-Thomas, Susan Cosgrove, Liam Cosgrove, Jonathan Lai)

I was grateful to get to know and work with Rachel. Her son’s challenges are so different from Liam’s, yet we found we shared a sense of sisterhood – an almost automatic understanding of the unique challenges that come with raising special families – no matter how they present. This comes to show the power of connecting with others, sharing experiences, and learning from each other – a lesson I wish to share with other parents in my Parent Mentor role at CHILD-BRIGHT. While we were there, Liam naturally turned to her as another mom figure and sought her out when he felt unsure. This is a tiny example of the power of unity in our special community. I felt comfortable sharing with her the intimate details of Liam’s care and she felt comfortable stepping in as needed. Through our relationships with other families living with disability we create a stronger whole, a louder voice. When parents like Rachel and me have the opportunity to speak for our community, we can feel the power of Canadian families and are humbled to be their representatives. I want to finish with a thank you to those families:

To all those parents – just like me – up at 4am and then spending the day wondering if the school will call, I am so grateful to you for all that you do and your infinite strength. Together we will change our city, our country, and our world!

To learn more about getting involved at CHILD-BRIGHT, visit our Get Involved section.

Helping Ella Enjoy Life

“My daughter Ella is all rainbows and lollipops! She is always giggling and makes me so happy. But life as a single mom of three children, including one with special needs, is not always easy. I often feel quite lonely.”

Alyssa Keel lives in the Toronto area and is mom to three young children. Big brother Braeden is four years old, and twin sisters Raegan and Ella are three.

“I want all three of my children to play and have fun.”

— Alyssa

“Raegan and Ella are rare mono mono twins; monochorionic (meaning they shared the same placenta) and monoamniotic (meaning they shared the same amniotic sac). They were born premature at 29 weeks of gestation, and weighed only two pounds, 4 ounces and two pounds, 10 ounces at birth. They spent 80 days in the NICU at Sunnybrook,” says Alyssa.

“I gave birth via emergency c-section. Raegan was born first but it took longer to get Ella out. She suffered a grade 4 (severe) brain bleed. They warned us that it was likely she wouldn’t survive, and a few days later, she almost died. But she pulled through and now, three years later, she is a sassy, strong-willed preschooler!”

But Ella’s birth experience left her with special needs.

“Approximately one week after birth, Ella was diagnosed with hydrocephalus (a condition where there is an abnormal accumulation of cerebrospinal fluid in the brain). And shortly after her first birthday, she was diagnosed with cerebral palsy. She cannot walk, sit unassisted, or stand. She needs lots of support and equipment.”

“It’s a lot of work but my kids make me happy. I’m also very lucky to live in a big city where Ella can attend a special needs preschool, and where we are close to hospitals like Sunnybrook and SickKids. But my experience has changed my dream of what it would be like to have three kids. I’ve had to adapt, and I often feel very lonely. I don’t fit in. Most single moms don’t have as many children as I do, and many don’t understand the challenges I face with a special needs child. It’s hard to join their activities. For example, in the winter, they like to meet at indoor play centers, but the slides and games aren’t accessible to Ella. I want all three of my children to play and have fun.”

“It’s not easy to find accessible places, and finances in general are also a challenge, but I want Ella to have fun, to enjoy life, and to play in the park too. I do everything I can to help all my children live life to the fullest.”

Why CHILD-BRIGHT Matters to Me
“CHILD-BRIGHT matters to us because our story is only one of many; each family has a unique voice and story to be told, and in doing so, we open the possibilities of helping other families and children with different abilities. I always hope that our story will connect us with those families with similar stories, so that we can all feel understood and valued. It is my hope that the difficulties my children may face or that our experience navigating the system may help other families in the future, so that one day brain injuries, and cerebral palsy, will no longer feel so isolating.”