CP-NET Five-Year Report

CP-NET reportI helped to design, build and write content for CP-NETs Five-Year report. It was an excellent opportunity to practise and further develop my writing, editing and web-design skills. Check it out here.

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

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 extend? 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 to 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 in order 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 deep in the science often seem to lose sight of the fact that not all of us can, or care to, speak science. Though we greatly 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 voice 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, care givers 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 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.

Podcast: #Two3rds Happy CP Day Part 1 (and a Webinar)

Scott & I are back! In this episode we discuss their experiences with Cerebral Palsy and try to figure out when C.P. Awareness Month actually is. We debate the potential need and reasons for a figurative holiday celebrating individuals with the diagnosis. Give it a listen here.

I’m also participating in a free CP-NET webinar on Friday April 21 from 11:30 a.m.-12:30 p.m.: Growing Up with CP: Mental Health and Well-being. Please register, save the date and share with your network. See the event poster here.

Podcast: #Two3rds: Is the AODA Eh O.K?

two3rds3

In the second episode of #Two3rds, Scott Bremner and I speak with David Lepofsky, Chair of The AODA Alliance, (www.aodaalliance.org, @aodaalliance, #AODAFail) lawyer and accessibility advocate about the implementation of the Accessibility for Ontarians with Disabilities Act, 2005. Give it a listen here.

*Note: While the volume is a bit inconsistent, due to unforeseen technical difficulties that we’ve since learned from, please stay with us. We felt this interview was too good not to share. Cheers.

Some new, positive F-words to keep in mind

Cerebral Palsy: The Six F-Words for CP.
Cerebral Palsy: The Six F-Words for CP.

Twice in the past couple of weeks––once at a CP-Net Stakeholders meeting and at the OFCP Annual General Meeting–my attention has been drawn to “The Six F-words for CP:” function, family, fitness, fun and future.

At first, I admit, that these sounded like a too obvious and overly simplified solution in the struggle to find a realistic and helpful approach to life with CP. But I was nonetheless intrigued, and aware that I may be too cynical towards such things.

The review article, “The F-words in childhood disability: I swear this is how we should think!” written by Peter Rosenbaum, from the CanChild Centre for Childhood Disability Research at MacMaster University, and Jan Willem Gorter, from NetChild Network for Childhood Disability Research in the Netherlands, was provided in my OFCP AGM package. I thought why not give it a read?

And I was pleasantly surprised. While I still believe this approach is a bit obvious, I appreciate  that it, although published in September 2011, is gaining traction within the research and treatment community.

While I invite you to read this article for yourself, there are a some key, exciting, points of revelation worth mentioning:

First, the traditional medical model of diagnosing and “fixing” doesn’t work with CP.  Put simply, CP is too complex and effects each of us differently, even, for example, two people who technically have the same type of CP. Thus, there is no short list of go-to treatments, no cure all. Not to mention that results are often only small and gradual after persistent, sometimes lifelong, treatment. Our quality of life can be improved but we cannot be fixed. At this point, such an absolute goal will only lead to frustration and disappointment.

Second, one does not need to do something, such as walk or talk, normally in order to be functional. Conventional development is a reasonable guide, but by no means the only way of doing things. I often explain, to people who inquire about my limitations, that I can do everything an able-bodied person can do, just maybe in a different way. Just as someone else may wear glasses to see, I use canes to walk. What’s important is that children with CP be given the opportunity, and assisted as necessary, to learn how to function to the best of their ability in a way that works for them. Fine-tuning their performance of these functions will naturally over time.

Third, treatment and counselling should include not only the child with a disability, but their family as well. Explaining the child’s condition and treatments––and making sure they understand––can help parents, grandparents and/or siblings make peace with this new reality and move forward to a happy and fulfilling life for all. This could mean helping with exercises, finding accessible activities for the whole family to do together, or learning how and when to advocate for the child.throughout their lives. When complicated on my ingenuity in accommodating a task, I often point out that others could probably do the same if it was necessary.

Fourth, fitness and fun can be grouped together in that it is important for a person with CP be given the opportunity to discover activities they enjoy, just like anyone anyone else. Then, similar to function, figure out how it may need to be accommodated to their abilities.

Lastly, and perhaps most importantly, people with disabilities have a future, just like you. Service providers should make this clear right from the start, and keep it in mind throughout their relationship with the child and their family. This could be a future full of friends, education, goals, dreams, and even romance.