AKRON, Ohio - Nancy Henn can't daydream on the job. If she's distracted for even a few minutes, her fragile inner controls may loosen, making her vulnerable to the nightmarish chaos of a broken mind.
On a recent Thursday, she sat at a desk in downtown Akron, microfilming documents for Summit County's Office Services Department. It was repetitive, exacting work.
She paused and looked up, her brown eyes less than excited.
"I know. C'mon," murmured Amanda Robinson, Nancy's job coach. "Go on, you have plenty more to do. OK?"
Nancy went back to work.
For eight years, except holidays and a smattering of vacation days, Nancy Henn, who is severely autistic, carefully has tended the paperwork that fuels the inner workings of Summit County. The 30-year-old woman lifts sacks of mail, transports them to cartons, loads a car and hand delivers her packages to various county departments, among other jobs.
She makes a union wage, carries medical insurance, pays taxes, and pays for her job coach with her earnings. Her most recent tests show she has an IQ of 20, yet she pulls her weight at work and is expected to produce as much as her non-disabled colleagues.
"Nancy's here because she's earned the right to be here," said David Hickman, who oversees Summit County's Department of Office Services.
In July, the National Autism Society named Nancy as the year's "Outstanding Individual With Autism."
She attended the award ceremony in Pittsburgh, accompanied by her parents, Joe and Marilyn Henn of Macedonia, Ohio. A framed photo shows her standing at a podium, beautifully dressed. How much she understood of the ceremony is a mystery.
So is her disease. So are her many triumphs.
Nancy Henn is ranked in the bottom 10 percent of those afflicted with autism, a neurological condition with no known cause and no cure.
Autism shuts a person off from everyday living; those severely afflicted must scale internal mountains in order to communicate with the outside world.
Iowa natives Marilyn and Joe Henn moved to Akron when Joe, who worked for Firestone, was transferred. At the time, the couple had a 4-year-old daughter, Lisa, and 10-month-old twins, Michael and Nancy.
Marilyn noticed early on that something wasn't quite right with her youngest daughter. Unlike her twin brother, Nancy refused to learn to eat lumpy baby foods, which are designed to help older babies gradually adjust to solids.
Then the tantrums started. Nancy opened the refrigerator and downed bottles of liquid antibiotics. She repeatedly jumped or fell out of second-floor windows and pulled up carpet to shred the padding. She also yanked out all her hair, strand by strand.
The next years were filled with doctors' visits and special intervention programs for Nancy.
Marilyn took her little daughter everywhere. She had no break. No one was willing to baby-sit Nancy.
But one person liked the tiny, towheaded little girl.
In the late 1970s, the Henns were living in Nashville, and Nancy, then 4 years old, was working with Keith Gustafson, a graduate student in special education.
At that point, Nancy simply couldn't communicate.
Gustafson, who's now a special education expert in Bottineau, N.D., said he was told, in no uncertain terms, that he was not to teach Nancy any sign language because it might hinder her speech.
But Gustafson wanted to see whether he could somehow help Nancy make a bridge to the world. One day, as he sat with the little girl in a classroom listening to children's songs, he decided to do an experiment.
Pulling from his imagination rather than a textbook, Gustafson signed "music." And since Nancy loved the ringed pretzels that came in crinkly little bags, he invented a sign for those, too.
The next morning, Nancy came into the classroom, smiled and made the sign for pretzel.
"And this is the little girl they said would never do anything," Gustafson said in a phone interview from North Dakota.
The Henns ignored several experts' advice to institutionalize Nancy, instead mainstreaming her with her peers.
In 1995, Nancy graduated from Stow-Munroe Falls High School and started a lengthy school-to-work transition program. Nancy, who had been prone to fits of screaming, learned to work quietly carrying books at the Kent State University library - a job coach always at her side.
"We found people who would believe in us," Marilyn Henn said.
Unless a miraculous cure for autism is found, Nancy, like others with her level of disability, always will require one-on-one help. With that support, she is able to live in a pleasant, middle-class ranch home with two other disabled women.
Nancy can utter only a handful of words , but often communicates by squealing, with different tones signaling happiness, anger or impatience. When she links her pinky finger with another person's pinky, she's demonstrating love or affection. If she tightens her neck muscles, furrows her brow or rapidly swings her arms, it's a warning to those around her that she needs help to prevent losing control again.
"Settle down, Nancy," her longtime aide, Andrea Frost, will tell her.
Nancy regularly signs about 50 words, including "friend" for Frost, and she knows many more.
Signing has its limits, however. Sometimes she makes a sign simply in an attempt to communicate. When she signs "popcorn," for instance, it can mean that she wants popcorn. Or, she may simply be trying to talk to another person.
And, there are the subtle jokes.
No one knows Nancy's true intellectual abilities - autism keeps them hidden. But Frost said she sometimes shows a sly sense of humor.
Nancy once purposely left out one piece of mail from her sack, to tease her job coach. And when Frost told Nancy to find a new video rather than view the same old one, Nancy slipped the beloved video into another case, disguising it.
Minute by minute, Nancy Henn must choose to be present in this world.
During one Sunday Mass, her parish priest achieved some insight about his faithful congregant.
"She kept singing a song after everyone stopped," said the Rev. Paul Kropek, who has served St. Henry's for three years.
But she was on pitch. It was her way of throwing herself in."
Posted in Lifestyles on Thursday, December 11, 2003 12:00 am
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