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Grit, Grace and Gratitude: a Mother’s Journey with Down Syndrome

Snapshot of a Soul Place in the land of special needswritten and illustrated by Kari Burk “Homework is cancelled!” These are the final words in a unique new book about Down syndrome, gleefully spoken by Mielle as she hula-hoops across a green field on a summer day in the Kootenays. This snapshot perfectly captures the humour, gratitude, grit and grace that inform and enliven Kari Burk’s remarkably intimate memoir, published November 1 in honour of Down Syndrome Awareness Week and premiered at the DSRF From Good to Great conference. Snapshot of a Soul Place in the land of special needs celebrates a mother and daughter’s journey with Down syndrome in painting, photography, poetry and prose. It’s a coffee table book with 96 colourful pages and a soft laminate matte cover that feels good in the hand. This is a book about Down syndrome for people with Down syndrome and the people who share their lives—a much needed addition to a culture sorely lacking in elegantly presented images of the alter-abled. Kari Burk says, “Perhaps the greatest obstacle faced by a person with special needs is being misunderstood and in turn, isolated, from life’s processes and events. This book is my way of bridging that gap, celebrating the people, places and images that have shaped our lives and inspired my art.” Kari is a single mom, multimedia artist and landscape gardener living in Castlegar where she operates Muddy Tutu, Organized Grime and Garden Art. Her physical engagement with landscape is reflected throughout the 40 paintings and 60 photos that unfold the life story of 25 year old Mielle. Compost is a recurring image of transformation and regeneration, showing up in text, photo and cartoon. In the acrylic portrait ‘Self with Scaffolding’, figures rise up from the horizon to form braids around an everywoman face. In ‘Bridging the Gap’ an ancient mountain crone grounds young offshoots in stony terrain.Kari’s poems are first person accounts of the tiny moments that become a lifetime. Her watercolours float off the page and into the heart. We follow Mielle from infancy to womanhood, from breastfeeding clinic and sign language class through two heart surgeries to high school graduation. We hear from family, care workers, teachers and friends. We share her enthusiasm for singing, dancing, bowling, horseback riding, rhythmic gymnastics and the day program of Community Living. We learn how Mielle’s birth inspired her grandfather Rick Scott to write the song ‘Angels Do’ and make a video starring her that ran for ten years on Treehouse TV. You can see it now on Youtube or at www.rickscott.ca/videos. He recalls the earliest days of DSRF and recounts how he came to be our Goodwill Ambassador and ‘Angels Do’ our anthem. Now adults, the toddlers who attended Rick’s first DSRF concert 20 years ago still flock to sing onstage with him each year at our annual Christmas breakfast. Snapshot of a Soul Place was edited and curated by Rick’s partner and long-time collaborator, Valerie Hennell, who spent several years compiling and shaping the narrative. Gra’ma Valley says her relationship with Mielle has grown and flourished over time, and that creating this book has brought them even closer.“It took years for me to find a comfortable place with this guileless being who welcomes me despite my awkwardness. She had shown me that my clanking, self-protective defensiveness is a kind of disability. One day walking along the beach she looked up at me and howled, ‘Valley, relax!’ Her perception is so often. Homework is cancelled indeed!” BC BookLook says: “A sophisticated memoir that captures the poignant affections that arise when a child is born with Down Syndrome, Snapshot of a Soul Place is evidence that many of the best books in B.C. are being self-published by sophisticated folks who deeply care about their subject matter.” Snapshot of a Soul Place will appeal to families, schools, libraries, care givers, educators and health professionals. Available for $30 at DSRF and selected stores. Mail order from www.snapshotofasoulplace.com. “give us timeand we will explaingive us a handand we will buildgive us loveand we will sharegive us lightand we will shine”
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Latest News

01/02/2016
Thank you very much to Vancity for their generous grant of $10,000 in support of DSRF's Money Math and Budgeting program for young adults with Down syndrome! We are so grateful for your investment, which will pay lasting dividends to many families.
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21/12/2015
In the fall of 2015, DSRF presented our 20th anniversary conference and celebration, "From Good to Great: Enhancing Quality of Life for People with Down Syndrome." The feedback from the event has been overwhelmingly positive; if you attended, we trust you found it both enjoyable and informative. We are pleased to announce that videos of both Keynote presentations, as well as six of the breakout sessions, are now available for online viewing. In addition, session outlines from every presentation are available for download, along with additional materials from many of the talks. Click here to view the videos and downloadable conference materials. The materials are arranged with the two Keynotes at the top of the page, and alphabetically by speaker last name thereafter.
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Down Syndrome Research Foundation
1409 Sperling Avenue, Burnaby
British Columbia, Canada
V5B 4J8

Fax: +1 604 431 9248
Phone: +1 604 444 3773
E-mail: info@dsrf.org