Announcing the Winners of our 2019 KT Innovation Incubator Competition

We are pleased to announce the two winning teams of our 2019 CHILD-BRIGHT KT Innovation Incubator competition: the Making Sense of Connectedness team and the Ready 2 Work team. Read more about both teams below.

The Making Sense of Connectedness project is led by Natalie Miyake (Autism Advocate/Parent, West Island Association for the Intellectually Handicapped), Dr. Melissa Park (Principal Investigator, Participatory Research / School of Physical & Occupational Therapy at McGill University), Caitlin Bard (Autism Advocate/Student), Lyne Charlebois (Executive Director of West Island Association for the Intellectually Handicapped), Anabel Sinn (Principal Designer, Connected Narratives) and Casey Vormer (Autism Advocate/Artist, Project Coordinator).  

Meet the team here:

Natalie Miyake

Dr. Melissa Park

Caitlin Bard

Anabel Sinn

Casey Vormer

What is Making Sense of Connectedness?

The Making Sense of Connectedness team will use the KT Innovation Incubator grant to give neurodiverse children and youth, as well as their families, the opportunity to build an online hub of sensory environments in Montreal to engage the public about the impact of these sensory spaces on the learning, health, and well-being of neurodiverse children and their families.

More specifically, the team will:

• Place children/youth on the autism spectrum and their families at the centre of the project to co-create initiatives that will change everyday sensory spaces based on their experiential knowledge

• Collaborate with children/youth on the spectrum to represent messages and important themes, which will be accessed on the online platform

• Use ethnographic methods (e.g., photographs, mini-films, stories, fieldnotes of participant observations) to document the process of engaging the public, co-designing and evaluating initiatives.

This is an innovative project that aims to modify sensory environments in health care and commercial settings and that will be co-led by people with autism spectrum disorder (ASD) and family members of children/youth with brain-based developmental disabilities. They will document the process through ethnographic methods to better record their different approaches at engaging the public in collaboratively creating and implementing child and youth-led initiatives to help create these neurodiverse-friendly environments.

““Our work as part of the Making Sense of Connectedness project will transform the ways in which we respond to and collaboratively take action led by the experiential knowledge of neurodiverse children and youth. Our project is about potentiality and we are thrilled that CHILD-BRIGHT both understands and stands behind the potentiality of citizen engagement.” ”

— Melissa Park, Principal Investigator

This team’s partnership was established in April 2015 when Dr. Melissa Park and Natalie Miyake (Former Board Member of West Island Association for the Intellectually Handicapped) met with families with children diagnosed with autism. The participatory research project at the time provided children and their families an opportunity to take photos and videos of places where they experienced social inclusion/exclusion, with particular emphasis on sensory supports and barriers in those spaces. The team has since grown to include more autism advocates and artists to support the infrastructure for photographs, mini-films and stories of neurodiverse children and youth. 

The grant was funded by a McGill Social Sciences & Humanities Development Grant 2014 Making sense of social inclusion: An exploratory photo-ethnographic and participatory study of the experiences of children with autism and their families in the community. Our aim was to understand the sensory experiences of children diagnosed with autism and their families in public spaces; and how they make sense of, and develop strategies to promote, experiences of social-spatial inclusion.

The Ready 2 Work project is led by Dr. Priscilla Burnham Riosa (Principal Investigator, Department of Applied Disability Studies at Brock University), Lisa Whittingham (PhD Student), Courtney Bishop (PhD Student), Nickolas Kenyeres (Technology Specialist), Dr. Briano De Rezze (Collaborator, School of Rehabilitation Science at McMaster University), Dr. Wendy Roberts (Collaborator, Integrated Services for Autism and Neurodevelopmental Disorders) and Neil Walker (York ASD Partnership Project Liaison/Coordinator).   

Meet the team here:

Dr. Priscilla Burnham Riosa

Lisa Whittingham

Courtney Bishop

Nickolas Kenyeres

Dr. Briano De Rezze

Dr. Wendy Roberts

Neil Walker

What is Ready 2 Work?

The Ready 2 Work team will use the KT Innovation Incubator grant to develop and pilot an online vocational/employment readiness platform alongside self-advocates with autism spectrum disorder (ASD), their families, and professionals who operate vocational programs for people with ASD.

More specifically, the team will:

• Conduct focus groups with key stakeholders (people with ASD, their families, and program leaders from relevant vocational/employment organizations) about the needs of job seekers with ASD

• Develop and test the online platform with ongoing feedback from key stakeholders to ensure that the hub stays relevant for end users

• Pilot the finalized platform with end users both involved and not involved in the previous project phases to evaluate the overall experience and perceived utility of the tool.

The project is motivated by both the importance of vocational and employment success among people with ASD and by the shortage of existing tools that currently support people with ASD to market their skills to potential employers. This ‘gateway to employment’ platform will provide tools to individualize employment readiness that can lead to concrete deliverables (e.g., customized resume, mentor connection) that would be helpful in beginning or continuing their vocational/employment search.   

““This end user-developed online portal may have far-reaching implications for helping people with ASD become better equipped to enter the workforce. Meaningful employment not only benefits end users but may have positive societal benefits to the broader community.” ”

— Ready 2 Work Team

The CHILD-BRIGHT KT team, including the members of the KT Advisory Committee, will also conduct a case study about innovation in knowledge translation and propose an appropriate evaluation framework for the Making Sense of Connectedness and Ready 2 Work teams.

Congratulations to both winning teams for these highly innovative projects!

We would also like to thank all the applicants of our second CHILD-BRIGHT KT Innovation Incubator grant competition as well as our review panel, which was composed of parents, researchers, clinicians, educators, trainees, and youth with expertise in KT research, childhood disability research, occupational therapy, mental health services, communications, and advocacy.

Meet Carrie Costello, CHILD-BRIGHT's New Parent Mentor

Hello, my name is Carrie and I am honoured to be joining the CHILD-BRIGHT Network team as its new Parent Mentor. 

I have three beautiful daughters, ages four, seven and eleven years old.  My middle daughter loves music and hugs.  She also has global developmental delays and a seizure disorder with Todd’s paresis.   My work with her every day is both challenging and infinitely rewarding. I am grateful to have this new position to support the amazing work that CHILD-BRIGHT is doing for children with brain-based developmental disabilities.  The network’s different research projects span such a wide range of ages and stages—this excites me as this research will benefit and impact the future of our children. 

I have both work and volunteer experience as a parent adviser. I sit on CHILD-BRIGHT’s BRIGHT Coaching Parent Advisory Committee, am the Chair of the Rehabilitation Centre for Children’s Parent Advisory Committee, have experience facilitating parent networking and information sessions, and have also served as a panelist at the Children’s Hospital Research Institute of Manitoba (CHRIM) Child Health Days, contributing to discussions on how academics doing research in university settings are assessed.  

I also work as both a playwright and puppeteer in theatre for young audiences. I love this work and have used many of my dramatic skills in my work with my daughter with a developmental delay. I have also incorporated many of the strategies I have learned working with therapists and my daughter into my work as a puppeteer and playwright. 

I will be transferring many of these skills to my new Parent Mentor position: listening carefully, re-telling a story and getting to know my audience. My goal is to help parent-partners be successful in their roles by keeping track of their needs, letting them know what resources are available to help them, and sharing strategies that have been shown to be successful. I will also be their link to the CHILD-BRIGHT Citizen Engagement Council, and will represent their interests on CHILD-BRIGHT’s Training Committee.

If you have questions, concerns or would like to share a story, please contact me at parent.mentor@child-bright.ca. I look forward to getting to know you!

Still Transitioning...

This testimonial was originally published in the National Hospice and Palliative Care Organization’s ChiPPS pediatric e-journal #54. 

By JoAnne Mosel, CHILD-BRIGHT Patient-Partner, and Richard’s mom

The transition of a child with a brain-based developmental disability from the pediatric to the adult care system is an issue of large concern today in Canada, and many parents like myself, who have been through this step, continue to face challenges despite our child now being an adult.

My name is JoAnne and my son Richard is now 31 years old. He has a rare disorder called Duplication 15q (Isodicentric 15q) Syndrome which manifests in autistic traits, sleep disorder, pervasive developmental disorder (PDD) and epilepsy, among others.

The Start of Transition

When my son entered his teens, I began to grow more aware that we would need to prepare for his adult years. School had been our main service provider and we knew he would soon age out. The school took over responsibility for many therapies that he needed such as speech therapy, occupational therapy and physical therapy. During his teens, he even received applied behavioural analysis therapy, which is usually reserved for children under the age of 5 with autism. This was provided on a one-on-one basis and his therapist was an excellent match for his personality. He made good progress, from which he benefits still to this day.

But other services and professionals were growing more elusive.

His neurology team had taken a back seat since an EEG revealed atypical spikes but no clear reason to medicate him or follow up regularly.

His pediatrician only saw him for emergencies such as earaches or other such issues.

And although behavioural specialists and psychiatrists were still in the picture, as the years went by, therapists fell to the wayside. It became more and more difficult to access services. Budgets were being cut and getting an appointment with a social worker or coordinator took months.

Where to Start?

As I prepared for his transition, I wondered where to turn. Was transition a subject to be broached with the education system or the social services system? In our case, we wanted to pursue two options in particular: access to a rehabilitation day centre or a specialized education adult centre. When he was about 14 or 15 years old, I began to ask questions about these options and was told we’d have to wait.

In our case the age of 18 would be pivotal for the medical side whereas 21 would be the age-out for educational purposes.

At the age of 21, he started going to a rehabilitation centre where he was doing productive activities, but over time, these were abolished. And contrary to the name, no rehabilitation services were included.

Transition Happens Everywhere

One thing I learned by watching Richard grow from a teenager to an adult is that transition is about more than medical care and services… it’s about supporting the entire child. In 2012, Dr. Peter Rosenbaum and Dr. Jan Willem Gorter, Co-Founder and Director of CanChild respectively, published a paper titled “The ‘F-words’ in Childhood Disability” that introduced 6 words that the authors believed should be the focus of childhood disability: Function, Family, Fitness, Fun, Friends, and Future. These resonated with me, and I’d like to share the impact of transition on these 6 crucial fronts for Richard:

FUN – My son used to enjoy going to concerts and shows. Music is his one great love and when he was young, going to children’s shows was fun, inexpensive and very doable despite always struggling with crowded open spaces. The noise, movement and unpredictability caused him distress and affected his behaviour.

As he grew older, kids’ shows were no longer an appropriate venue and he became more and more difficult to manage in public due to his growing strength and the impact of his seizures and medication (effective or otherwise).

Music class seemed like a good option and we found one geared to individuals with disabilities, but he was asked to withdraw after 3 weeks. They judged him to be too able. Most of the participants were in wheelchairs and they said he was too mobile and disturbed them.

We tried other activities but as he grew older, those also became problematic. He couldn’t keep up in Boy Scouts; his skiing instructor found him too big and heavy to pick up or guide down the hill, etc.

He was losing access to the activities he most enjoyed.

FITNESS – While my son was in school, he had access to the school gym. This gave him an outlet for his pent-up energy and he enjoyed shooting baskets. The gym also had climbing equipment, bean bags to throw, and the staff ran exercises to promote hand-eye coordination.

Once out of school, the burden was on me and my family to find activities that would keep him strong and healthy. Most organized activities offered by the community became competitive, and these did not suit him. During his teens, he participated in track and field in the Special Olympics but after a few years of this, it became less and less worth going. There was too much waiting in line for him. The large environment was overwhelming with its high ceilings and echoes. His sensitivity to noise also resulted in worse behaviour rather than better.

He now goes to the pool at our local Y to swim.

FAMILY – As my son grew older and stronger, his behaviour became more unpredictable making family get-togethers with my small extended family more difficult. He started to exhibit more signs of aggression and violence. He had difficulty tolerating the noise and couldn’t handle many people speaking at the same time. He made his displeasure known. His siblings tolerated his breaking their belongings but made sure to let him know, in no uncertain terms, they were not happy. Richard also increasingly wanted their attention; wanting to sing together, read together, go for walks.

His younger siblings did their best to dedicate this time to him—they would sing and read to him—but as siblings do, they also often picked on each other.

FRIENDS – Like many kids with his type of disabilities, my son’s friends are few and far between. While he was integrated in a regular school and class (with an aide), a few children took an interest in him. They would volunteer to help, say, bring him to the school gym or to another activity. They would throw around a ball with him in the schoolyard.

But once out of an integrated setting, there were no friends to speak of. He lacks the independence or skills needed to be in groups of verbal individuals, or to participate in their activities. His interests lie in one-on-one socializing. Back and forth verbal interaction is not possible in groups of non-verbal individuals with whom he is placed.

FUNCTION – In transition, much emphasis is placed on developing activities of daily living. For some reason, academic skills are left behind. I don’t understand why this is so often the case. I believe it is a misunderstanding and dogma surrounding the ability to learn once one is outside of school age.

Collecting bottles and returning them in the bottle return machine at the grocery store is an activity that has taught him concepts more concretely than a classroom setting could provide. The voucher emitted from the machine meant it was time to go shopping and he could purchase what he wanted. This was a critical milestone. It meant gaining a bit of control over his life.

Like most of us, he went through a period of having a strong need for control over his life. I feel this need cannot be overstated. It occurs perhaps at a time when even more control is being exerted by outside forces. Parents, teachers, time schedules... all infringing on his need to want to sleep in, eat when he felt like eating, do what he wanted to do. When trying to structure his time became too exhausting, we’d let him go on YouTube to watch videos. He was initially unable to navigate using a mouse, but quickly became extremely adept at it. I noticed, after watching what he was doing for a while, that he was capable of much more than I’d realized.

Which leads me to the final word: FUTURE

At this point, there is no plan in place; we are still searching for ways to best support Richard as a now 31-year-old adult. There are no interesting goals laid out, only vague words such as ‘increasing independence’ or ‘functional skills’. But as long as he is medically stable (seizures under control, side effects of the meds minimized, etc.) I’m hoping he will be offered many learning opportunities, socially, functionally and academically.

On my end, I am doing what I can to help improve the system for children like him in the future. I am now a patient-partner on a research project called READYorNot, funded by the CHILD-BRIGHT Network and co-led by Dr. Gorter (one of the authors of the F-Word article that I referenced above) as well as Dr. Ariane Marelli and Dr. Khush Amaria. In this project, we are developing and evaluating e-health aids to help patients and families take charge of this transition. The project is supported by Canada’s Strategy for Patient-Oriented Research (SPOR) initiative, which endorses the active partnership of patients, researchers, health professionals and decision-makers in research to build a sustainable and accessible health care system that optimizes the health of all Canadian citizens, including my son. By sharing my story here, and my experience within the READYorNot team, I hope to help make the lives of children like my son better in the future.

Metformin in CP Team Forms Stakeholder Engagement Committee

The Metformin in CP team is pleased to announce the creation of its Stakeholder Engagement Committee (SEC). The SEC was formed to provide a platform for collaboration, input, and guidance from various stakeholders specific to the CHILD-BRIGHT Metformin in CP research study.

The first SEC meeting was held at Holland Bloorview Kids Rehabilitation Hospital on February 7, 2019. The committee consists of 5 stakeholders with a wide range of lived experience in the cerebral palsy community, including three individuals diagnosed with cerebral palsy and two parents of children diagnosed with cerebral palsy.

The SEC members bring insights from previous involvement with cerebral palsy research including participation in pediatric research and research advisory committees, securing funding for basic and clinical cerebral palsy research, as well as years of experience in health journalism and research. One of our members, Jessica Geboers, had the following to say:

“I am a journalist currently working as a communications officer at the University of Guelph-Humber in Toronto. As someone who has a moderate form of Spastic Diplegic Cerebral Palsy (CP), I am an active member of the disabled community and often use my journalism to advocate for and further the understanding of what it is like to live with a disability. When Dr. Darcy Fehlings invited me to join the Metformin for CP trial Stakeholder Engagement Committee, I was all too happy to accept and bring my experience to the table. I, like all of us, am excited by the possibilities that Metformin may hold for children and youth with CP, both now and in the future. There’s no magic pill to cure the challenges of CP, but every little bit helps as they grow and work towards their best lives.”

The inaugural meeting included all 5 stakeholders and the research teams from Holland Bloorview and The Hospital for Sick Children, and served as an opportunity to familiarize the members with the study design, aims and objectives. The committee members were already able to provide meaningful input that has since been integrated into the study design including how we can better communicate eligibility criteria to families to ensure their understanding as well as expanding on how the study pills can be administered (i.e. crushed via gastrostomy tube). The productive discussion began what we hope will be a fruitful collaboration between the research team, stakeholders, and the greater cerebral palsy community.

Learn more about the Metformin in CP project in our Report to Community.

Strengthening our Connections at the 2018 CHILD-BRIGHT Annual Meeting

At CHILD-BRIGHT, we always look forward to in-person gatherings. As a pan-Canadian network, with members living across our very wide country, this is never easy, which is why we were especially thrilled to welcome 117 network members, including 20 patient-partners, at our 2018 CHILD-BRIGHT Annual Meeting in Montreal from December 5 to 7.

Members of all our program and project teams, including patient-partners, research team leads, committee members, and central office staff came together to discuss our shared mandate, explore topics of interest related to patient-oriented research, and brainstorm ways to strengthen our connections among projects, programs, teams, and sites!

Download the program

Programming Overview

Nancy Mason MacLellan, Manager of Major Initiatives at the Canadian Institutes of Health Research (CIHR), offered opening remarks alongside CHILD-BRIGHT Principal Investigator Lucy Lach and Citizen Engagement Director Frank Gavin. Each network research project team then presented updates about their work during our Meet the Investigators session. A series of sessions followed, tackling a wide variety of topics including recruitment, stakeholder engagement, equity in research, and sustainability. Consult our full event program here.

Networking & Learning From Each Other

A poster session took place on Day 1 and helped attendees and teams exchange ideas about ongoing work. A total of 22 posters were on display. Cross talks occurred on several topics of mutual strategic interest such as how to meaningfully involve patient-partners in the research work, and how to incorporate sex and gender into the projects. Read our full poster abstract booklet here.

A BRIGHT Board & Networking Corner helped promote a collaborative atmosphere throughout the entire duration of the meeting. Attendees could post advice on this dedicated wall, share their thoughts, contribute comments, or ask questions. The networking section of the board also allowed members to not only share their direct contact information with other attendees, but also ‘pitch’ ways in which they could positively contribute to the work of other teams in attendance or solicit help to address some of their current team challenges.  

Policy Forum

On December 7, policy makers from across Canada led discussions and engaged our multi-stakeholder group in a session that provided the audience with an overview of how policy is formulated and explored the gaps that exist between the worlds of research and policy. Three illustrative case studies underscored a number of key factors that should be accounted for when advocating for policy change. It is intended that these preliminary discussions set the stage moving forward as CHILD-BRIGHT mobilizes knowledge to action to help address issues related to the care of children and youth with neurodevelopmental disabilities.

Advancing our Patient-Oriented Work

Committees and groups also convened, including parents of children with brain-based disabilities who met for a lunch to exchange their experiences with one another and share their insight with our Citizen Engagement Director, Frank Gavin, on how their involvement in the network could best advance and inform our patient-oriented work. Patients also helped steer the format of the meeting and its publications, including reshaping the way meeting speakers and participants were introduced in our programs; each contributed written personal testimonials and impact statements instead of traditional biographies, an approach that was proposed by a network patient-partner to better help highlight the expertise that lived experiences also bring. Download these here and let us know what you think of this alternate approach! 

Leveraging the Expertise of our Funders and Network Members

We also had the honour of hosting some of our network funding partners including our Platinum funding partners from the Montreal Children’s Foundation & Opération Enfant Soleil, who graciously hosted a roundtable discussion titled How to keep donors and foundations engaged in research. Using a roundtable discussion format, meeting attendees also brainstormed ways to engage different populations in research including newcomers to Canada whose first language is not English, Indigenous People, parents living with income insecurity, and youth who use communication devices.

By coming together, we learned from each other and created new partnerships and collaborations, proving that a network can truly be greater than the sum of all its individual parts.

(Photo credit: Julian Haber)

Thank you to all our event attendees, many of whom traveled a great way to join us. We also wish to sincerely thank our network funding partners, without whom our work would not be possible.