|1/10/2013 6:00:00 PM|
Mother writes book explaining Down Syndrome to children
|When Becky and Dan Carey needed to explain to seven year-old Casin that his new sister, Tessa, has Down Syndrome, they were at a loss.|
Their efforts to inform their son have resulted in a children's book, "47 Strings: Tessa's Special Code." It has sold over 500 copies in seven weeks, according to publisher Kristin Mitchell of Little Creek Press in Mineral Point.
Although Tessa (16 months) is expected to live a normal life, her household routine includes regular visits from three types of therapists. She also goes to appointments at the Waisman Center, a Madison clinic specializing in developmental disabilities. Tessa's parents knew young Casin would need help understanding these things.
"We wanted to be the first ones to explain this to Casin, and to do it in a way that would make sense to a child his age," said Becky. Before she married and moved to Belmont, Becky was a member of the Sullivan family of Mineral Point.
"We had trouble understanding the diagnosis ourselves at first," she added. "I think people have misconceptions about Down Syndrome because society has shaped it to be a tragic thing. But we quickly learned that Tessa is just like other babies."
Finding that educational information did not exist, Becky set to work creating a children's picture book for Casin. On tag board pages she told about the 46 human chromosomes, calling them "strings," and explained that Tessa and others with Down syndrome have an additional string. Becky's sister, who works as a school guidance counselor, helped put the text into child-friendly language.
Then Becky and Casin sat down and read the book together, while Dan videotaped them for YouTube. The video was transferred from YouTube to Becky's blog: deartessa.com. Her reading of the book and his reaction to it may be viewed there.
"Casin thought it was awesome," Becky recalled. "He really perceived it well and is proud to share it with his peers." He has read the book to his classmates at Belmont Elementary School.
"The video went kind of viral," Becky said. "The last we know, it's received over 12,000 views."
A printed, hardcover edition of "47 Strings: Tessa's Special Code"
followed. The book has been endorsed by the Madison Area Down Syndrome Society, and by the National Association for Down Syndrome.
The Waisman Center is writing a grant to purchase copies for every family who uses the facility. A portion of the proceeds from the book go to the Madison Area Down Syndrome Society and similar organizations.
"It feels great to provide this resource as a tool for families whose child is carrying an extra chromosome," Becky said. "I wish we'd had it when we were struggling. As far as we know, there's not another book on the market like it."
She worked with Little Creek Press, a division of Kristin Mitchell Design, and well known book illustrator Bonnie Leick. To raise funds for the project, Becky utilized Kickstarter.com. The online site gives people the opportunity to seek donations for their projects, and includes incentives for giving.
"Each Kickstarter campaign has 30 days to reach its funding goal," Becky explained. "We raised our $15,000 in only nine days. Local people gave to it and a lot of the donations came from people we don't even know."
"The support has been overwhelming. We're so grateful for it. Tessa has touched a lot of lives, and she doesn't even know it yet."
"The response was positive, from the minute the video came out," she continued. "We're learning that people are using the book for things outside of Down Syndrome."
"This has definitely been a learning experience for us and for other people. It's changed our life, but for the better," she said.
The book was released in November. It is sold in Mineral Point at Bobbi Jo's Interiors, Leaping Lizards, and Foundry Books. Online it is at Amazon.com and littlecreekpress.com.
"I hope it will be used by children of all ages to open their minds and hearts to accept all types of differences," Becky said.
Becky Carey will sign copies of her book, "47 Strings: Tessa's Special Code," on Saturday January 19th, from 10 a.m. - noon, at the Gray Dog Deli in Mineral Point.
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