At Friday’s annual post-Thanksgiving gifts bazaar, Mary Haakenson Perry sat among the local merchants and craftspeople in Kenai’s Challenger Learning Center. Her table held copies of the three books she’s published — inspired by two generations of her family’s homesteading history and by her empathy for the developmentally disabled.
The cover of Perry’s first book — published in 2004, shortly before her 2006 retirement as a special education teacher at Homer’s Paul Banks Elementary — has a painting of a boy marching into the woods with a red flag held aloft. The boy is Jim, the eldest of Perry’s five brothers, who was born with the developmental disorder Down syndrome. The book’s title — “Onward, Crispy Shoulders!” — seems strange to those unfamiliar with the hymn “Onward Christian Soldiers,” which Perry said Jim loved to sing, though during their homesteading childhood at Anchor Point in the 1950s, he often misunderstood the title.
The first hint of Jim’s difference, Perry said, came when his parents overheard doctors discussing whether to classify the three-year-old boy as a cretin or a mongoloid.
“They (Jim’s parents) went home and looked it up in the dictionary, and that’s the way they found out,” she said. “There wasn’t much teaching to doctors and medical staff about how to break that kind of news to parents.”
Down syndrome is a genetic disorder in which an extra chromosome causes intellectual disability and flattened facial features. “Mongoloid” and “cretin” are obsolete terms for mental disability, now considered offensive. The treatment options of the day were as limited as the terminology, Perry said.
“The way they were advised to handle it was to put him in an institution and forget it,” Perry said. “If you chose like my parents did to keep him at home and raise him, you were on your own.”
Though Jim spent one year in California at a special school, Perry said that when he came home “my mom felt she could teach him as much as he was learning there — he was learning manners and dressing skills and the kinds of things she was teaching him already. He learned to count and his alphabet, and that was about it.”
What she most remembered about her brother was his work ethic.
“We had a cow, and he was in charge of the milking and taking care of her,” Perry said. “Until he got his job at the school, the cow was the most important thing in his life. Then when he got the job at the school, he felt like the school wouldn’t run right if he wasn’t there.”
Jim was an assistant janitor at Anchor Point’s Chapman Elementary school for about 25 years, living at the homestead and riding the bus down to school, Perry said. He worked there until he began experiencing Alzheimer’s disease around the age of 50, and has since died.
“When my brother was failing in his health, I got to thinking about the great stories we had about him, and thought they might be helpful to people coming behind us who had a child with Down syndrome — they might be inspiring or encouraging,” Perry said. “So I decided to write the stories down… I always loved to write, but I never really considered being a writer until I wrote this book. And I enjoyed it, so I wrote two more.”
Before his life inspired her first book, Jim inspired Perry’s career.
“That was the main reason I wanted to go into special ed — because I thought it was so unfair that he never got to go to school,” she said.
Had Jim grown up later, he may have had that chance.
“It was a changing profession,” Perry said of special education. “When I was going to college, most kids with special needs were still in special schools. By the time I started teaching three years later we were at least in the school with the other kids, and then by the end of my career, integration became more and more accepted and expected as more parents got to be advocates. Parent groups started, advocacy groups my parents knew nothing about.”
Perry’s second book, “Something to Be Thankful For,” is about her mother Esther, who as a child came with her family to Alaska from Minnesota in 1935 as one of the colonists, escaping the Great Depression, who founded an experiment agricultural community in the Matanuska Valley. Though Perry departed from family history to try fiction with her third book, “The Mystery of Cheechako Island,” she returned to her focus on helping readers understand those with DOWN syndrome. The story is a young adult mystery staring 11 year old Sunny Turner, a girl with DOWN syndrome.
“As the story unfolds, you see what the little girl can do,” she said. “At the end, because it’s a book for young people, I put some things you might want to know about DOWN syndrome, addressing some of the questions directly.”
Parents of her former students have read and enjoyed her books, Perry said, especially the one about Jim.
“Some of them knew him as a child, and seeing it from the inside out, they enjoyed it,” she said. “A lot of people appreciated his story because they can really relate to it… His response to the world — they can see that in their child too, to some degree.”
Reach Ben Boettger at firstname.lastname@example.org