Infographic workshop helps parents tell their child’s story

It’s said a picture is worth a thousand words. For a group of parents of kids with disabilities, an infographic that captures their child’s disability, needs and strengths is worth a lot more than that. 

When parents of kids with disabilities meet a new doctor, teacher, camp counselor, or therapist, they have to tell the same story over and over – making sure to explain their child’s condition or disability, his or her needs, their behaviours, positive qualities, triggers for anxiety, etc.  

Continually sharing (or trying to share) this information can be taxing and exhausting. Just ask Susan Cosgrove. She’s a single parent of three kids, two of whom have autism. She’s also a Family Leader at Holland Bloorview. 

Susan partnered with Christine Provvidenza, Knowledge Translation Specialist with Evidence to Care and co-created a vision for an interactive, family-focused workshop.  

To make sure key information is relayed, Susan worked with Holland Bloorview to organize and host two workshops (in December, 2017 and February, 2018) titled, “The Power of Storytelling Using Pictures,” thanks to the hospital’s No Boundaries Fund. 

The workshops were given by Susan, alongside Holland Bloorview’s Knowledge Translation Team, Evidence to Care, and members from the hospital’s Client and Family Integrated Care team.

The workshop showed parents how to create an easy-to-understand infographic that uses words and images to quickly convey all necessary information. It can easily be handed to healthcare workers, educators, anyone new.  

“This project began in response to my finding a kindergarten placement for my youngest son,” said Susan. 

“He has autism and is very bright, but has behavioural challenges. It was essential that his unique story be understood. School placement meetings are fast-paced and intimidating. I wanted to tell our complex family story in a way that was simple, fast and could be taken away with those who needed to hear it.”

During the two workshops, twenty-one parents rolled up their sleeves and learned how to use a free online design program, provided by PiktoChart, to create eye-catching graphics. They were also given tips on story-telling, creating messages, and writing in plain language. With these new skills they each created an infographic that effectively told the story of their child.

“It was really well received,” said Christine. “Families were really excited to learn a new skill that would help them bring their voice to life when advocating for services, needs and care for their child.”

The workshop also generated plenty of buzz outside the hospital on social media, attracting attention from organizations such as the Children’s Treatment Network, Ontario Minister’s Patient and Family Advisory Council, SickKids, Children's Hospital of Eastern Ontario, Grandview Kids Hospital and Toronto Public Health.

Going forward, a focus group will be held this month with attendees to explore how this workshop could be made even better, with another possible workshop in the works for later this year.

“It’s another tool they can put in their back pocket to communicate and share with others about how wonderful their child is and what their child needs on a day-to-day basis,” said Christine.

“Telling our stories shouldn’t be a burden,” stressed Susan. “As parents of children with disabilities we tell emotionally draining stories again and again. This is a part of our lives…I want parents to create a tool that removes the burden and presents their stories through their own special lens.”

And if the family is in a rush, or it’s a hectic, fast-paced environment, or if it’s emotional for the parent to express, there’s a chance important information could be missed. That information could have a huge impact on a child’s happiness and well-being.