Billys Story tells of raising autistic child

MAT-SU — Billys Story is an unpretentious book, printed at Mail Boxes Etc. on plain computer paper and bound with plastic rings. But like its author, the books humble cover disguises the compassion and strength contained in its pages.

Billys Story A 35-year Journey with Autism is at once uplifting, shocking, heartbreaking and humorous, but 75-year-old Maxine DeVilbiss said she didnt find the stories difficult to tell.

Its just something weve lived with, she said.

In 1963, she and her husband adopted two orphans from Korea. The younger of the two, Billy, would eventually be diagnosed as autistic. The book describes the familys efforts to help Billy become a functioning member of society, an endeavor which took Maxine DeVilbiss and her son from Kansas to Florida to Stanford Medical Center. In the end, it was Billys life at the DeVilbiss farm on Lazy Mountain that seemed to bring him the most comfort.

We decided to bring him home and continue with our love and discipline and trust for the best, DeVilbiss said from the family farm where she and Billy still live. I think maybe having him here on the farm and around so many people was good for him.

Despite the amazing progress Billy has made over the years, DeVilbiss book does not have a self-congratulatory tone. She simply shares the fears and successes of caring for an autistic child. She tells of the first time Billy called her Mama and of the winter trip she made in a VW bug down the Alcan Highway to take Billy to a speech clinic.

We certainly had many frustrations with Billy during these years, she writes. At times it seemed like one step ahead and two back.

The story begins when Ralph and Maxine DeVilbiss, with three of their own children, decide to adopt two boys from an orphanage in Korea. In her book, DeVilbiss includes a letter she wrote to friends and relatives in 1963, describing her husbands trip to Korea.

Finding himself in the midst of six hundred little orphans just about broke Ralphs heart, she wrote. Most of them were four and under in age … content to lay on their mats, when they should be playing.

When the two boys arrived at Anchorage International Airport, 2-year-old Billy weighed just 12 pounds and was unresponsive. He had been running a high fever and appeared to have pneumonia.

DeVilbiss says she knows the orphanage would have wanted them to return Billy to Korea, as people just did not adopt handicapped children in those days. But she and Ralph couldnt bring themselves to send away the little boy.

He probably wouldnt have survived, she said.

This is just one remarkable aspect of Billys story. The pages are filled with countless others Billys fascination with zippers, his first attempts to communicate and his life today on the farm.

The impetus to write the book, DeVilbiss said, was her sons gift of a computer. Several years ago, farmer and borough assemblyman Larry DeVilbiss bought his mother a computer, asking for just two things in return that she write the story of his adopted, autistic brother and the story of their homestead.

So Maxine DeVilbiss began working on the first, devoting a few months each winter to writing. Since she was a little girl, DeVilbiss has kept daily diaries. It was these diaries, which she kept all these years along with crayon drawings and workbook pages Billy did as a child, that proved invaluable in writing the book.Going back and rereading the diaries … it has brought back lots of memories, she said. I wished, as I was writing Billys story, that I had written a little more at the time.

In addition to providing the touching details that make the book so compelling, the diaries enabled DeVilbiss to accurately recall the chronology of events.

This fall, with Billys 38th birthday just a few months away, she decided it was time to complete the book and began working more diligently on it. When she was finished with the nearly 200-page manuscript, she took it to Mail Boxes Etc. and had 500 copies printed. Outside of one of DeVilbiss close friends, who is also the mother of a handicapped child, no one had read the book.

After I got it all written and had it at the publishers, I thought What is my family going to think? DeVilbiss recalled. She said while she had published a few small items over the years, she did not have much faith in her skills as a writer. And she wondered how her family members, whom she describes as quite protective of Billy, would respond to the candid stories in the book.

But she said the positive response has been overwhelming. The only criticism she has heard seems to be of DeVilbiss decision to self-publish.

Everybody is telling me I did the wrong thing, she said. Her goal was to keep the book inexpensive so that parents who needed the resource could afford it. But those who have read the book have told her she should have pursued a professional printing.

With the encouragement, DeVilbiss recently talked with a book distributor in Anchorage and is looking into the possibility of printing more copies.

DeVilbiss wrote Billys Story in part to assist parents with autistic children. She is planning to contact autistic groups around the nation to tell them of her book.

No one knows better than I do the stressful situations that parents of autistic children are going through, she writes. It is hard on all the family, and my love and prayers go out to all of you.

But with its universal themes of a mothers unconditional love and the frustrations of dealing with the medical establishment, the book is bound to appeal to a much broader audience.

Copies of Billys Story are available at New Song Christian Books & Gifts in Palmer and Shalom Christian Books & Gifts in Wasilla or by sending $6 to Maxine DeVilbiss at HCO4-9302 Palmer AK 99645. DeVilbiss can also be reached at 745-3483 or on the Internet at alaskamax@mtaonline.net.Photo: Maxine DeVilbiss, right, and her son Billy live on the family farm on Lazy Mountain. DeVilbiss recently self-published a book about Billys autism.

Submitted photo.