A touching book that “speaks from the heart” about Down Syndrome got its start on a Protection Island grandmother’s kitchen table.
Inspired by Expressionist artist Paul Klee’s images, Snapshot of a Soul Place in the Land of Special Needs was officially released on November 1 for Down Syndrome Awareness Week.
It tells the story of a Castlegar family’s journey from the viewpoints of Emily Carr graduate Kari Burk, daughter Mielle, who has the genetic condition, and her brother Max, relatives and special education assistants.
Award-winning producer Valley Hennell published the 96-page coffee table text to showcase daughter-in-law Kari’s “extraordinary” poetry, prose and paintings.
“I said to Kari, ‘One day, there will be a book like this (Klee’s) about you.’”
Valley wanted to get under the surface of the experience and share it in an insightful way. She hopes buyers will give the book to families experiencing the syndrome’s many learning, and often behavioural, challenges.
“Unless you are actually the parent, you cannot know the emotional spectrum families go through. A crayon can go a long way to communicate and comfort.”
Unsure herself how to interact with the loud, enthusiastic and perceptive child who “saw right through me,” Valley found the wall between her and Mielle dissolved when she realized she didn’t have to do anything other than just be present.
On the other hand, her musician husband Rick Scott was a magnet for Mielle. Grandfather and granddaughter appear together in “Angels Do”, a video of a song he wrote for her, and he became Goodwill Ambassador for the Down Syndrome Research Foundation. A second video with Pied Pumkin and Fred Penner, “Upside of Down”, features performances by artists with Down Syndrome filmed at the 2006 World Congress. Both can be seen at www.rickscott.ca/videos.
Valley says the labour of love has brought her “very much closer” to her granddaughter and Kari, a professional landscape gardener who considers Mielle one of her greatest works of art.
Kari and Mielle moved from Vancouver to the Kootenays in 2006, and now live in Castlegar, where they found a warm and welcoming community for those with special needs. Now 25, Mielle attends the day program at Kootenay Society for Community Living and enjoys rhythmic gymnastics and bowling. “I love her sense of humour,” Valley laughs.
Snapshot sells for $40, including mailing, at www.snapshotofasoulplace.com. Funding for the book came in part from the Columbia Basin Trust, Columbia Kootenay Cultural Alliance and an Indiegogo campaign.