Portland parent's book urges new view of Down syndrome

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PORTLAND — Raising a child with a developmental disability has its challenges, but for Kari Wagner-Peck the hardest thing is fighting others’ low expectations for her son.

“People who have Down syndrome are as complex and individual as any other person,” Wagner-Peck said. “My son has dreams, desires and goals. He loves reading, math and making up stories. He goes to theater, dance and movie classes.”

And, she said, just like many other 10-year-olds, “he loves ‘The Avengers.’”

Wagner-Peck, who lives in Portland, has written a book, “Not Always Happy: An Unusual Parenting Journey,” that chronicles her adventures in adopting a child with Down syndrome.

In addition to being a writer and blogger, she also holds a master’s degree in social work and home-schools her son, Thorin.

On her web page, Wagner-Peck also describes herself as “a humorist, an advocate, an activist, a social justice storyteller and a pop culture fiend.”

In “Not Always Happy,” she tells the story of marrying and becoming a parent in her late 40s with both humor and pathos, while also sharing universal lessons about parenthood and life taking unexpected turns.

“This book is not a niche memoir, but a story that anyone can relate to,” she said.  

She said she wants readers to “get caught up in the story and decide Down syndrome is not to be pitied or a cause for sorrow, but just a difference.”

Along with promoting her book, Wagner-Peck has also created a stage production of “Not Always Happy,” which won this year’s PortFringe prize for excellence in writing.

The show, which was directed by Bess Welden, was supported by a grant from the Maine Arts Commission.

When Wagner-Peck and her husband, Ward, decided to adopt, “(We told) the Department of Health and Human Services the biggest disability we could likely handle was a child who was left-handed or color blind.”

“In spite of that, (our caseworker) called us about a 2-year-old boy in a therapeutic foster home who had Down syndrome,” she said. But, for some reason, that didn’t dissuade them.

“In retrospect I would say we knew this was our child,” Wagner-Peck said. “Somehow we knew we were his parents.”

After deciding to adopt Thorin, Wagner-Peck said she and her husband did a lot of research into Down syndrome, but they were disappointed to learn that much of the information focused on the limitations.

“So we stopped reading about Down syndrome and decided we would just get to know and understand Thorin and not limit our lens or view of him to Downs,” she said.

The most painful part for her son, Wagner-Peck said, is that people stare at him every day, and “sometimes they (even) point their fingers or laugh … particularly other children.”

In raising their son, Wagner-Peck said, she and her husband “realized quite quickly that Thorin’s biggest disability is not Down syndrome, but society’s puny view of him.

“A great deal of the book is about the challenges of working with professionals – teachers, therapist, school administrators,” she said. “We were constantly asking that expectations be raised in regards to Thorin.”

“I experience the same joys all parents experience,” she added. “I love my son dearly. I never imagined I would be a stay-at-home parent. It really didn’t appeal to me. But, being home with Thorin has been amazing,” Wagner-Peck said. “Much of our learning is doing (and) my son’s social life is much bigger outside of school than it ever was in school.”

Wagner-Peck has been writing about her family for the past seven years, starting the blog, “A Typical Son,” in 2010.

She said the idea for the blog and her new book are the same.

“The goal was to present our life in the context we experience it – funny, messy and not just about Down syndrome. The stories (all) have a universal theme – inclusion,” Wagner-Peck said.

“Most of us can relate to being the outsider or being treated differently. My goal is for people to see that cognitive differences are like any diversity,” she said. “The same way we have worked to understand racism, sexism, homophobia, etc., we need to understand neurodiversity. Inclusion, understanding and acceptance is important to all people.”

Kate Irish Collins can be reached at 710-2336 or kcollins@theforecaster.net. Follow Kate on Twitter: @KirishCollins.

Kari Wagner-Peck with her son, Thorin. Wagner-Peck, of Portland, has written “Not Always Happy: An Unusual Parenting Journey,” a book about parenting a child with Down syndrome.

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  • shilton14

    I started reading it this Friday….I am almost finished!!! Would already be done but….life interferes with my reading time.