I Told the Story of Our Son's Transition and Researchers Listened

There are some aspects about my caregiving experience that have been harder than others. Whenever I can, I like to share ideas about what would have made our family journey easier so others might have an easier time. One of those issues is the TRANSITION of children with disabilities from children's health to adult services. Our son had a rough transition and we weren't alone in the disability community when called his 18th birthday 'Falling Off the Cliff'. I am happy to say that he's doing really well now and so I began looking for ways to share our journey from chaos to support and wellbeing.

I got involved as a parent partner in research a couple of years ago as a board director at Kids Brain Health Network and it's fun and interesting! Last week, I attended the American Academy of Cerebral Palsy and Developmental Medicine annual meeting where I co-presented a research project with principal investigator Dr. Jan Willem Gorter (The Transition Doctor - that's his name on Twitter). He's the head of CanChild at McMaster U. and the brains behind an app called ReadyOrNot that youth with disabilities can use to learn about how adult medicine works, how to navigate it and to advocate for themselves. Of course they do all of this with the support of family! The ReadyOrNot transition app is part of a larger Canadian national networked research project called CHILD-BRIGHT - check it out! The app is still in development and will be evaluated in a clinical trial, but we want everyone to know about the project so that lots of youth will volunteer for the study and service providers will be more aware of the transition challenges that youth and families face.

I also presented with Dr. Gorter on a panel about models of support for youth with disabilities and their families who are transitioning to adulthood. Personal stories of lived experience help to bolster the research messages and research helps families advocate for a better health care experience in the community. 

Advocating as a research parent partner is fun, interesting and a great way to contribute to making the system better for families. If this interests you, ask your clinical providers (nurses, doctors) about any current opportunities to participate in research projects that relate to the condition of your loved one. There is usually an honorarium paid to research participants and out-of-pocket expenses are always reimbursed if any travel is required.