Tag: CanChild

CP-NET Community Profile: Amanda St. Dennis

Jessica GeboersLeave a comment
Amanda St. Dennis

Last spring, Bloom posted on Facebook about an upcoming CP-NET webinar on mental health in adolescents and young adults. Happy to see such an important topic being discussed and investigated, Amanda St. Dennis commented on the Facebook post to reiterate how important conversations around mental health are for young people. She wished more research had been done when she was younger and struggling with her mental health. 

Thinking that Amanda may have some useful insights, Bloom’s editor put her in contact with CP-NET. Not long after becoming a participant in the MyStory project, Amanda became a member of the CP-NET Stakeholder Advisory Committee and the Transition Hub. More recently, she became a co-investigator on the Youth Engagement in Research project. While she had not expected all of this to come from one comment on that Bloom Facebook post, Amanda is thrilled to be engaged in research, using her education, background, and experience to help others, particularly during the pandemic.

In June, Amanda graduated from Carleton University with a Bachelor of Arts Honours degree in Child Studies with a minor in Disability Studies. She also has over ten years of experience working with youth with disabilities as a personal support worker and camp counsellor at Easter Seal Ontario’s Merrywood Camp.

This is all in addition to being a woman with disabilities, including mild to moderate Spastic Right-side Hemiplegic CP, Non-verbal Learning Disorder, ADHD-combined type, and General Anxiety. As her father was a part of the military, Amanda grew up navigating the healthcare systems and services available in multiple locations throughout Manitoba, Ontario and the North West Territories, often struggling to access the care she needed and deserved.

As can be seen, Amanda has a wealth of knowledge and experience that can inform CP-NET research priorities and projects. In joining the network, she has enjoyed having her voice heard, putting her education to use, and improving the lives of younger generations with an organization that listens to and works closely with all key stakeholders, such as herself. “They are actually listening to their stakeholders, to the people that this research affects directly, and they want to do better.” Amanda also appreciates the CP-NET approach to research. She says it’s more than data and written work; it’s also discussion and collaboration based on everyday experience and practice from multiple perspectives.

Put simply, engaging in research with CP-NET has given Amanda a greater sense of purpose and connection. “I matter, I matter because I have a disability, I matter because I have navigated the healthcare system,” she says. “I think that’s the biggest impact. And I think this could be one of the biggest impacts for other youth and young adults with disabilities.”

With this in mind, Amanda’s advice for other youth and young adults with disabilities who are thinking about engaging in research is just to try it. She explains that parents, clinicians, and peers can tell youths about the importance and benefits of research engagement, but they won’t know if it’s for them until they try it for themselves. And even if it turns out not to be for them, they still have a voice and made a difference. “A small action can shape a big result.”

This article was originally written and published as a part of CP-NET’s Community Profiles.

Some of my takeaways from the Brain-Child-Partnership Conference 2017

Jessica Geboers1 Comment

by Pinpoint National Photography
Youth of BCP2017

I had the pleasure of attending the Brain-Child-Partners conference here in Toronto on Nov. 6-7, 2017. I was there with CanChild but was also representing the youth voice.

The first session, Can We Fix the Brain? shared some fascinating and exciting therapies that help to rewire the brain and improve mobility. But it was the question posed in the title that really engaged the crowd, a question which quickly morphed into, “Should we fix kids with disabilities, and to what extent?” Given this is likely a common question among parents of newly diagnosed children, many parents in attendance stepped up to the microphones to over their thoughts and experiences. Listening to the many opinions on this question, a theme became clear to me:  We don’t need to be fixed; we need understanding and tools to help us achieve our potential and participate in society without stigma.

BCP2017, my first such conference, was an excellent example of research and community uniting around a common interest and goal — patient engagement. But how do we achieve effective patient engagement that satisfies all parties? This was a question that received a lot of attention but lacked a clear answer.

Several parents, both official presenters––including Rachel Martens, Julie Drury and Ann Douglas––and those in the audience shared their experiences advocating for their children, what they’ve done, learned and need to change. I appreciate these stories more and more as I get older because they help me to better understand the challenges that my own parents faced and concurred to give me the best life possible. And it is by listening to these experiences that help researchers and clinicians understand what and how they can improve the lives of patients moving forward. I particularly loved what Louise Kinross, editor of BLOOM, had to say about clear and effective communication––if you want to know if parents understand your message, just ask.

Louise also used one of my favourite quotes, from Albert Einstein, to illustrate her point: “If you can’t explain something simply, you don’t understand it well.” Those buried in science often seem to lose sight of the fact that not all of us can, or care to, speak science. Though we much appreciate their work, it should be communicated in the language of those it is intended to help, otherwise, it is almost entirely useless.

As important as the parent voice is, so is the view of the patient. Symon Hay captured the issue well when he said, “I think quality of life should be the root as individuals, health care practitioners, caregivers and researchers.” He also spoke about how lucky he was to have had a doctor who put more stock into who Symon was as a person than just his diagnoses alone. This enabled him to live a full and active life (We have a shared love of travel), when it seemed, on paper at least, that he shouldn’t. I couldn’t agree with Symon more.

I was thrilled to be included with and meet the small group of fellow youth with disabilities from across Canada at BCP2017. However, there should have been more of us. We should have been as considered and granted had as great a platform as parents.

Many of us with disabilities wouldn’t be where we are today without our parents, research, medical advancements and early intervention. For this, I am forever thankful to all those involved in my care and success. But it’s important to remember that we, the patients, lived it and are here to share our insights. This is especially important when discussing the transitions from childhood to adulthood or youth engagement. If you want to know what we think or need, either for ourselves or future generations of children and youth with disabilities––as you should­­––ask us.