Amazing how we are already half way through 2018 and what a year its been for us here at Kens Place Foundation and for our book that funds this cause, “Hello My Name is Ken”. Since our official book launch in March 21st this year, we have had many wonderful conversations and developed incredible connections with people and organizations. We are sincerely touched by the response we’ve had for the work we are doing and feel so blessed to be on this journey. Ken’s story and our story as a family seems to resonate with people in many different ways. A number have shared how they were struck by how they either had no idea what a life living with Downs could be like, what can happen for people with Downs as they age or how our life stories remind them of a time growing up with their own families. Our story allows others to feel something that maybe they never took the time to connect with before and it touches them deeply enough to express their gratitude as they approach me with a smile or a tear. I know the story of Ken’s life, although highlighting the amazing fella he was and his accomplishments and achievements throughout the years, also points to a very difficult part of his life. One that brings tears to anyone reading his story. I know too that this was how the story needed to be written. To show his spirit and the effect he had on so many and then how that same spirit carried him (and us) through his final days.
So far, the opportunities I’ve had to speak about Ken’s story whether to groups of 2, 5 or 20+ people at a time, have all been received with a sense of “thank you for sharing his story and the work you’re doing to make a difference”. I had no idea what the journey was going to be like and I can honestly say I’m touched by all who I have met, the conversations I’m having and the changes others want to see for their loved ones as well. Not just for people with DS but for others who may be challenged or marginalized in some way without appropriate access to qualified, dignified care at a very delicate time in their lives.
I seem to be following a thread as it leads us along the path to who we need to talk to next, a resource we can add to the website, a connection that will take us where we need to go, or a group we need to talk to. I’m constantly amazed at how this journey is unfolding. Even the work I do in another part of my life related to Positive Psychology is filtering into this work in ways I hadn’t imagined. I often reference the reason for doing this work, writing a book, creating a foundation is all because I believe “Other People Matter” to quote the late Chris Peterson. It comes through when giving a keynote speech and relating the research behind Daniel Pinks “Whole New Mind” about how we can communicate with health organizations so they work in Symphony with each other instead of in silo’s and in defense of themselves. As well, in hearing of the University of Victoria’s Centre for Aging also taking aim at changing this “Silo’ing” effect within our healthcare systems, I realize I am not alone with these thoughts. The time is now. If not now, when? These realizations strike me at least once a day as another e-mail comes in or I read about a similar story or work being explored.
I’ve also been known to say that I believe people learn through story better than any other way. Hence why I wrote a book! Our brains are wired for this and can follow along and remember the details better. So, I’d like to explore the idea of gathering stories from individuals and families living with Down Syndrome after 40. Tell us your story by sending an e-mail to firstname.lastname@example.org to open a conversation with us and we’ll send you a free copy of “Hello My Name is Ken”!!