Louder Than Words: Fairway teenager writes book to share message with others

Haley Linden of Fairway just wants everyone to know she is a "regular teenager," she said.

The 15-year-old loves summer camp, "American Idol," books and the Jonas Brothers just as much as the next person, she said.

But, sometimes people are scared to find that out, she said.

"Sometimes people are scared or not friendly with children with disabilities," Haley said.  "Sometimes you can tell in their voice."

Or in a questioning glance, she said.

"Actions speak louder than words," Haley said. "I don't mind sharing. I'm not the kind of person that just hides."

Haley has cerebral palsy. She was born prematurely in 1994 and suffered brain damage that affects her movement.

"I was in the hospital for months and months," Haley said. "My dad could pick me up in the palm of his hand."

Cerebral palsy affects the movement of her arms and legs, but not her mind, she said.

"I want to share my experience and tell them ‘Hey, I'm cool, I'm OK,'" Haley said.

Haley recently graduated from eighth grade at Indian Hills Middle School in Prairie Village and has written three books. The most recent she wrote by dictating to a paraprofessional, she said.

The story Haley wrote called "Helena's Special Gift" is about three horses, one named after her 7-year-old sister, Helena.

 "Helena has supported me through thick and thin," Haley said, "She helps me out a lot. She feeds me and she moves my chair."

In Haley's book, Helena helps Lillian, a horse who has a cart, and another horse in need of encouragement. Haley said she hopes to have the book published and encourage children to help people with disabilities, she said.

"The horse has a push cart kind of like my chair," Haley said. "I want other children to understand what children with disabilities go through."

Haley was recently invited to read for students at Helena's school in Brookside, and talked to students about how "we are all the same."

 "I'm very humbled," Haley said. "I just expected to give it to Helena for her birthday."

Haley has undergone a couple of CP-related surgeries to improve her eyesight, she said. Starting in July, Haley faces surgeries designed to help her regain some mobility she has lost in the past couple of years.

It can be dangerous and require a long recovery, she said. She hopes to document the whole process this summer with cameras present.

"I want to see how other people react to the surgery and to people with disabilities," Haley said.

 Haley said she hopes to include as much of the surgery and recovery as possible in her documentation, and journal updates on a Web site. 

Haley and her mother, Cynthia Wheeler-Linden, are in the "early stages" of working with physicians and independent filmmakers to create Haley's documentation.

"I'm sure it will not be perfect," Cynthia said. "I'm sure I'll be snapping at her and she'll be snapping at me. But we're still a normal family in today's environment."

Haley will undergo surgery on her hips and arms, Cynthia said.

"I'm as nervous as heck," Cynthia said. "I just try to detach, remove myself from the process. I have to be removed enough to say I'm alright with this. I can't be the mom at the side of the bed (crying)."

Cynthia said she is often nervous about what Haley must endure.  Like the first couple of times Haley took Botox treatments to help relax muscles. It is a fairly common treatment for individuals with cerebral palsy, Cynthia said. But Cynthia, a single parent, said the thought scared her. At 35, and not looking to benefit from any cosmetic outcome, she sought out the treatment herself. 

"I said inject some in my body and if it doesn't kill me, she can do it," Cynthia said

About 8,000 babies and infants and about 1,500 preschoolers are diagnosed with cerebral palsy every year in the United States, according to the United Cerebral Palsy organization.

That is one of the reasons Cynthia said OK when Haley presented the idea of creating her own reality show of sorts this summer.

"I recognize it is a different world in that body than it was for me at 15," Cynthia said.

Cerebral palsy can cause a variety of inabilities in controlling motor function. It can cause muscle tightness, problems in speech, vision impairment and involuntary movement. Many individuals with cerebral palsy undergo surgeries to maintain or regain abilities.

 "We want to document it so other kids with CP can see what she goes through," Cynthia said. "We hope it can help ease the discomfort for someone else."

To view Haley's Web site and follow her experience, visit www.haleysbooksonline.bravehost.com/.

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