Archive for Thursday, February 24, 2005

Mom wants to share pain, joy of autistic children

February 24, 2005

Jacqui Folks keeps the television quiet and doesn't ever use the vacuum cleaner around her 4-year-old son. He can't handle loud noises. She places objects in her home high enough that little Ethan has to "use his words" to get what he wants. She describes everything to Ethan in simple detail, hoping it will teach him skills to communicate with his parents, his siblings and his schoolmates.

Folks said she and her husband, Michael, have had to learn to be a new kind of parents since Ethan was diagnosed in March 2004 with pervasive developmental delays, the most common form of autism.

Because of trauma from a work-related accident while Folks was pregnant with Ethan, the boy was in and out of the hospital for the first two years of his life. It was only after those first difficult years that doctors were able to confirm his parents' suspicions that Ethan was developmentally delayed.

Since that time Folks has haunted the library, teaching herself all she can from books about autism.

"I've spent a year educating myself, and I still don't know all there is," she said.

Today, Folks takes every teaching opportunity she can by constantly reinforcing the basics, such as colors. Instead of asking Ethan to put a toy in a bucket, she might ask him to put the yellow toy in the red bucket.

"I don't smother him, but I know he is going to learn the most right now," she said.

Folks said it was difficult for her to witness kids in Ethan's preschool noticing there was something different about her son.

"He's already getting picked on at school, which makes it hard," she said.

But Ethan is lucky because he has his 6-year-old brother, Bret, always watching out for him.

"He's overly protective of his brother," Folks said of Bret. "He loves him so much."

Ethan, whose speech is developed to a 2-year-old level, recently began speech therapy classes.

Folks said without a network of others in the area affected by autism, she would not have known about the speech therapy class and other opportunities available to help her son and her family. That is one reason she wants to form a local support group.

Folks is aware her family is not alone in dealing with autism. Through her research, she has learned there are at least six others in Eudora dealing with forms of autism, so she's decided to form a support group for those children and their families.

Because of privacy laws, Folks does not know the names of other autistic children in Eudora, making her unable to contact them. She decided it was up to her to get her information out to the public and get the group started.

"My main goal is helping other people," she said. "I just want to help parents."

Folks said sometimes all the support the parent of an autistic child needs is to know that others have been through it before. She said just having a list of phone numbers of others who have dealt with autism would help parents tremendously.

"Someone to say, 'Been there, done that. Here's what you should do,'" she said.

Folks is a member of the Douglas and Jefferson County Transition Council and the Parent Resource Network. The organization provides resources and support to parents of children with autism.

The Parent Resource Network will have a resource fair with speakers from 4 to 7 p.m. April 13 at Free State High School in Lawrence. The fair is open to anyone who would like to attend.

Those interested in learning more about the local support group can contact Folks by e-mail at

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