Story last updated at 4:25 PM on Thursday, December 16, 2004

Sister pens book on brother's life

By Carey James
Staff Writer

  Photo provided
For years, Mary Perry pondered writing a book about her and her family's experience sharing their lives with Jim Haakenson, her brother, who had Down syndrome.

But it wasn't until 2001, when Haakenson's health began to fail, that Perry said she undertook the process in earnest. The resulting book, "Onward, Crispy Shoulders! An Extraordinary Life with an Extra Chromosome," gives readers a chance to see Haakenson as Perry and her family saw him -- a gentle, passionate, caring man who found happiness around every corner.

When Haakenson was born on May 9, 1945, in Anchorage to parents Lionel and Esther, the only thing unusual was the early birth and the baby's first breathless moments. It wasn't until two years later that the parents first heard -- or overheard -- a doctor describe their son as "Mongoloid."

The family knew Jim had trouble learning things, but doctors repeatedly told them that he was fine. Shortly after hearing the diagnosis and researching the condition, they traveled to Seattle to visit a specialist. Though the specialist said he was impressed with Jim's manners, toilet training and socialization, the doctor still recommended that he be institutionalized because he would never learn anything and would put too much of a burden on the rest of the family.

"Esther felt as if the guy had punched her in the stomach," writes Perry. "She and Lionel had been so hopeful that this 'expert' could give them some pointers on raising and teaching Jimmy. The man was talking about their son as if he were nothing but an old rag to be disposed of."

So began the Haakensons' journey to teach Jim themselves, one that lasted throughout the 56 years of his life. Perry said she hopes the book will help other families understand the capacity of those with Down syndrome, something she understands not only through her family's experience but also through her job as an intensive needs teacher at Paul Banks Elementary School.

Things are different today than they were in the mid-50s when Jim should have entered school. If born today, he would be enrolled in school where a plan would be developed to stimulate his education and push him as much as possible. But then, his parents became his teachers and did the best they could by following their hearts.

"Teachers just said, 'Sorry, we can't help you,'" Perry said. "My parents did what they thought was best and he got some from it and made his life around that."

Perry said being part of a large family was also a boon to Jim's development. His older brothers taught him to read a watch, for example, while his younger siblings provided socialization.

"As an older brother, he was like a playmate to me," said Perry, who is one of seven children born to the Haakensons. "He was right about on my level."

As the family grew up, Jim's life might have continued to focus on the tasks he learned, like tending the family's livestock, but it did not. With all his siblings talking about jobs, Jim took it upon himself to go ask a neighbor if he could work with him at Chapman School as a janitor. The entire family was shocked by his enterprise, Perry said.

"He took it upon himself to find a job all on his own," she said. "He really surprised us. He surprised us a lot."

After some negotiating and quite a while "volunteering" Jim became a full-fledged janitor, a job as perfectly suited him as existed, Perry said. He loved riding the school bus to school, loved being around the students, loved doing his job and feeling useful. With his new public role, Jim adopted somewhat celebrity status in Anchor Point.

"He really touched a lot of lives," she said. "He just wanted to serve and help people. He was outgoing, friendly and tender-hearted."

Much of the book focuses on stories gleaned from her parents as well as her brothers, Jim's co-workers and others that knew him well. There is plenty of seriousness, but lots of humor as well in the adventures this extraordinary person experienced, as inferred by the title, "Onward, Crispy Shoulders," which refers to Jim's interpretation of one of his favorite hymns.

"Some stories are very funny and some are real sad, but that's just like all of life," Perry said. "You have both."

Black-and-white photos of Jim throughout his life document his career as assistant janitor, one he had for 25 years. In one, he stands proudly showing his 10-year pin on his lapel, a grin stretching his face to the limit.

When Alzheimer's disease finally began to steal Jim's hard-won accomplishments, the family struggled greatly as he eventually had to stop working at the school for his own protection. Perry doesn't gloss over the painful final years of Jim's life, but said the book is a tribute to all that Jim accomplished and to her parents for their tireless efforts to help him.

"I think it was very comforting to look back at all the things he did," she said.

Perry said she hopes the book will provide insight to others just starting their journey as parents or caregivers to someone with Down syndrome, to help them understand that children with the condition will rise to the expectations set for them.

Currently it is for sale at the Homer Bookstore as well as Riverside Books in Soldotna. Perry said she plans to create a Web site to market the book.

Carey James can be reached at