Bootheel family addresses 'differences'

Editor's Note: This is the first in a series of articles from the Dexter Daily Statesman focusing on special needs of special children.

By NOREEN HYSLOP

Daily Statesman

When Ben and Belinda Worley's daughter Emma Kate wouldn't sleep as a baby and got sick often, they thought is was all part of having a baby, but Emma Kate started having other problems and was eventually diagnosed with Aspergers Syndrome.

Aspergers Syndrome derives its name from Hans Asperger, a Viennese pediatrician, who identified a pattern of behavior about 50 years ago that included extreme anxiety, the inability to form close relationships, one-sided conversations, intense absorption in a special interest and what some would call "clumsy" motor movement. These symptoms and others that have long been overlooked in a child who in the past might have been called delayed or "just a little different" now are considered typical of children with Aspergers.

Raising a child who has Aspergers is no easy task, as the Worleys of Dexter, Mo., will attest.

Emma Kate was diagnosed with Aspergers at the age of 3, but the diagnosis came long after the symptoms began.

Children with Aspergers are prone to being extremely fussy babies with limited sleep patterns.

"Emma Kate never slept for more than an hour at a time the first year of her life. She simply didn't require sleep," her mother said.

The Worleys got in the habit of staying up late and getting up early, usually around 4 a.m., to accommodate their little girl. By age 2, she was usually sleeping four hours in a stretch.

"She cried incessantly," Ben said. "She always had colic, stomach aches or ear infections. She vomited every day, sometimes several times a day, and the only thing that helped to soothe her was to rock her."

They rocked in rocking chairs. They rocked walking, doing dishes, and talking on the phone. Her limited time sleeping most often took place in a swing.

"I remember one day Ben was putting her in the swing, and we realized she was just getting too big for it. She no longer fit," Belinda said. "He looked at me holding her and said, 'OK, now what do we do?'"

With each new challenge, the Worleys would seek out a new solution.

Speech came slowly. At 2, Emma Kate could understand others, but started to show signs of frustration at not being able to communicate. Belinda, a speech therapist, taught her to sign.

"It relieved a lot of that frustration. She could at least communicate through signing," she said.

The Worleys meet challenges with innovative solutions. Emma Kate didn't like to crawl. Like so many children with Aspergers, she was tactile-defensive. She did not like to get her hands dirty or sticky, and would not place them on a floor or hard surface to crawl.

"I used to lay over her and when she'd try to stand up, I'd place her back in a crawling position. It eventually taught her to use her hands and crawl," Belinda said.

"I don't understand why I have to work so hard," an exasperated Belinda told her pastor, Phil Warren, one Sunday after a particularly trying morning with Emma Kate. After church ended, Belinda found a book on her driver's seat, left by Warren. She would refer to it often when she needed to gather comfort and strength.

The book, "What's wrong with Timmy?", is written by Maria Shriver. With insight derived from the Kennedy-Shriver family's involvement with rights of the disabled, Shriver helps to deepen the understanding that all children possess unique characteristics. The book reinforces to children that although some children are different from others, there are more likenesses between them than there are differences, and it is those differences that make each of them unique.

"It's what we base everything on," Belinda said. "There is nothing wrong with Emma Kate, just like there is nothing wrong with the character in Shriver's book. It's just that she perceives things differently and learns a bit differently than most kids. It doesn't mean that there is anything 'wrong.'"

The Worleys try to convey that to others, not only with Emma Kate, but with regard to other children who are "different."

Belinda Worley knows the differences in children. She is a speech therapist who sees special needs children every day at her Dexter facility, Bootheel Pediatric Therapy, which she opened because of her daughter.

"I was taking Emma Kate to therapy twice a week when she was 2, making trips to Cape Girardeau, when someone said to me, "Don't you do this for a living? Why are you driving all this distance?"

There was no facility in the area to handle Emma Kate's needs. The Worleys opened their own facility, with occupational and physical therapists on hand as well.

"Without Emma Kate, I probably would never have gone out on this limb, but I'm so glad we did," Belinda said.

The Worleys became involved with Stoddard County's Relay for Life event at its inception seven years ago. When former state representative Marilyn Williams lost her battle with cancer in 2009, Emma Kate created paintings framed by her parents that sold for $20, each one bearing a dedication to Williams on the back. Williams was known to Emma Kate as "Auntie M," and after her death the little girl continued to paint.

She raised more than $8,300 over a two-year period for Relay for Life.

"Without Emma Kate and her 'differences,'" Belinda said, "that money would never have been raised."

These days, approaching 5 years old, Emma Kate is thriving. Although her communication skills are at times awkward and patterned, Belinda said, it is precise and through therapy her frustration level is much more manageable.

She still presents the daily challenges typically seen in Asperger children. She takes weekly swimming lessons in Poplar Bluff, Mo. Asperger children have a limited sense of movement, which is usually accompanied by an awkward gait. In water, they are fluid, "just like everyone else," said her mother.

Emma Kate will attend public schools but will initially receive special services as needed.

"She'll go to school, and one day we'll send her off to college just like parents do every fall," Belinda said. And with a smile, she adds, "But I may just have to go with her."

There is a purpose, the Worleys agree, to everything, and for them, Emma Kate has served many purposes. She is their greatest challenge but also their greatest love.

"Asperger's is not who Emma Kate is," Ben said. "It's just a part of her."