Sunday, January 24, 2010

Georgia moms create autism support network

From the Savannah Morning News:

After moving to Bryan County, Ga., Jeanette Orr felt lost. Like most parents new to an area, she wanted to meet other parents, but more importantly, she wanted to meet other parents with autistic children.

“I think it’s just important to get together and share experiences, because sometimes you can feel really alone when you’re dealing with a special needs child,” she said.

She went to Becky Bryant, a parent mentor for Bryan County schools and mother of two children on the autism spectrum. She found that Bryant had run a support group in the past, and asked for direction on starting her own.

The group, the Autism Support Corner, has finally come to life and met for the third time Jan. 12.

At the meeting, parents sat in a circle; they introduced themselves and told the names and ages of their children. They talked about things like the difficult patches they’d gone through, things their children loved to do, and they gave each other advice on how to navigate through paperwork like deeming wavers and told each other about resources like Easter Seals.

Like most parents, they laughed, and they told stories of funny things their children had done or said. They thought of activities for their children that they could do as a group. But one sentiment they kept returning to that evening was that it was nice to be with other parents who truly understood.

“I’ve gotten the look in public before like, 'Why don’t you control your kid?’” Jen Steele, mother of Katie, who just turned 7, said.

“They just see a kid pitching a fit and they think she’s having a temper tantrum. They don’t understand that she’s terrified … or she’s overwhelmed.”

Something as simple as a light that’s too bright or a sound that’s too loud can easily overwhelm an autistic child dealing with sensory issues, Steele said. This can trigger the sort of meltdown that she was referring to.

“Autism is kind of a mysterious disability because you look at the kids and you can’t tell anything’s wrong with them,” Bryant said.

“They don’t have any physical characteristics that set them apart.” That is, she said, “until they either don’t talk or they have an explosive behavior or whatever and then it’s like 'What is going on with this child?’”

The parents are working on planning activities that would be friendly for their children, and talked about ideas such as bowling and bounce houses. Another project they talked about was finding a theater that would allow a sensory friendly movie — one where the lights would stay on and the sound would not be too loud, because many of the parents said their children had never been to a movie.

One of Orr’s goals is to have a birthday party for every child in the group that wants one. “They shouldn’t not have a party just because they’re on the spectrum,” she said.

“The social aspect for my child is wonderful,” Steele said. “I really can’t wait for our first play date. I’m really looking forward to it. So, you know, it’s social for her and it’s social for me.”

According to data collected in 2006 by the Autism and Developmental Disabilities Monitoring Network, about 1 in 110 children have autism spectrum disorders. The sites that participated in their studies in 2002 and 2006 averaged an increase of 57 percent between the two years.

The reason for this increase is heavily debated. Some question whether autism is genetic or whether it’s caused by environmental factors, whether it’s triggered by Thimerosal, a mercury containing compound found in vaccines, or if detection methods have simply improved.

Whatever the case may be, caring for an autistic child can be expensive. According to the Centers for Disease Control, recent studies have shown that the lifetime cost of caring for a person with an autism spectrum disorder can be as much as $3.2 million.

The studies took into account medical and nonmedical care as well as a loss of productivity.

One of the missions of the group, Bryant said, is to get the community familiar with the children and their disability, which will in turn make their transition from school to the community easier when they graduate.

This way, Bryant said, “they’ll already be aware of who they are and know a little about their disability and how to deal with them.”

“This world is not just for the able, it’s for the disabled as well,” Bryant said. “That is one of our big missions to get the community involved with our kids.”