The Clinton Herald, Clinton, Iowa

April 8, 2013

Living with autism

By Katie Dahlstrom Herald Staff Writer
The Clinton Herald

---- — CLINTON — The moment Jennifer Medinger was turned away from helping her 4-year-old son Kyle during an Easter egg hunt was one of the hardest she faced as a mother.

“He can pick up an egg. If you guide him to it, he will pick it up. I knew it was something he would have liked to do,” Jennifer, of Clinton, said. “I took him there and I see all these other little kids running around picking up eggs. The people at the gate wouldn’t let me in to help Kyle.”

Kyle, who’s now 9, is autistic. Mentally, he’s on the same level as a 10 to 12 month old. When something like a light or noise upsets him, he may hit or pinch himself. He makes loud noises and is always moving some part of his body.

But on the outside, Kyle looks like a typical boy his age.

“A lot of people don’t understand. They stare. If you glance at him, he looks fine. You just might think I’m a bad mom that doesn’t discipline him,” Jennifer said.

More than 1 million Americans have autism, a complex developmental disability that typically appears in the first three years of life and affects a persons ability to interact and communicate with others. In order to increase awareness and educate the public, individuals and organizations across the county celebrate April as National Autism Awareness Month.

According to Autismspeaks.org, autism is a “spectrum disorder,” meaning it affects individuals differently and to varying degrees. While no known causes of autism have been identified, it is generally believed that it is caused by abnormalities in brain structure or function.

When he was 18 months old, Jennifer took Kyle to the Mayo Clinic in Rochester, Minn., where he was in the hospital for a week because of a seizure disorder he has. During this visit, Jennifer was informed that Kyle had autism.

Symptoms of autism include delayed or lack of speech, repetitive use of language and/or motor mannerisms, little or no eye contact, lack of interest in peer relationships, lack of spontaneous or make-believe play and persistent fixation on parts of objects.

Jennifer had noticed that Kyle seemed behind developmentally. He didn’t sit up on his own until he was 9 months old, but doctors at home had assured Jennifer that Kyle would eventually reach these milestones at his own pace. Being 21 years old with no prior experience with children, Jennifer felt no cause for alarm.

“Kyle’s diaper was the first diaper I had ever changed. Kyle was the first baby I had ever fed. So I wasn’t at all very familiar with babies,” Jennifer said. “I thought maybe he was just a little bit slow and would come to it on his own.”

He’s never spoken and never will, doctors have told Jennifer and her husband, Dennis. Kyle also doesn’t use sign language, but that doesn’t mean he and his family don’t communicate. During one-on-one time, Kyle strokes Jennifer’s face and smiles.

“Those who know him — we— know what he wants,” Jennifer said, motioning to her family, including her other son Kaedyn, 5, and her mother Mary Wiest.

More and more American families are getting acclimated to the disorder. Autism has become more prevalent in the United States than ever before. The Center for Disease Control and Prevention estimates that autism is present in 1 out of every 88 births in the United States and almost 1 in every 54 boys.

Even with the growing numbers, Jennifer said people still struggle to understand her son. She’s been told at various times that he should be put in an institution and she’s also been asked why she brings her son in public.

“He’s the same member of our community as the next. Why can’t he come out and do that?” Jennifer said. “I don’t care if you look at Kyle because he’s one of the cutest kids you’ll ever see. So please do look at him, but don’t stare at him and say bad things.”

It’s the lack of awareness that lead Lori Bigwood, of Camanche, and her sister Lacey Huling, of Clinton, to start the Strides for Clinton County Autism walk in 2011. Lacey’s son, 8-year-old Dalton, was originally diagnosed with autism when he was a little less than 3 years old.

“I had a meltdown for about 20 minutes when I found out. Then I said, ‘OK. It’s time to put on the big girl pants and deal with this,’” Lacey said.

Now doctors have revised their diagnosis to attention deficit-hyperactivity disorder and asperger syndrome. The latter is often considered a high functioning form of autism. Through therapy at Comprehensive Rehab in Clinton, Dalton’s speech took off and he is now in a regular classroom at Whittier Elementary School.

Dalton still gets overstimulated on occasion and has to be pulled out of class, but he is more under control than he used to be, Lacey said. Even with his high-functioning form of autism, Lacey still feels there’s a misunderstanding about her son’s condition.

“A lot of people don’t get it,” Lacey said. “I think unless you live with it, you don’t get it.”

The sisters were searching for an autism walk or race to participate in close to home. When their search came up empty-handed they opted to take matters into their own hands. After only two races, the pair has raised more than $30,000, which they have donated to area schools’ special education programs and the Quad-City Autism Center.

This year, they will be able to offer scholarships to seniors in high school who are going to pursue a college education relating to autism.

This year’s walk and 5K will take place at 10 a.m. Saturday, May 18, at Imperial Lanes in Camanche.

Five years after being turned away from helping her son collect Easter eggs, Jennifer still hopes the community will become more aware of autism. For Kyle, she wishes happiness and a future as a valuable member of the community.

Although some days become challenges because of Kyle’s autism, Jennifer couldn’t imagine her son any other way.

“I’m proud everyday he wakes up and smiles. I think, if I couldn’t talk and tell you what I wanted to do. If I couldn’t use a utensil. If I couldn’t open a door and I could still get up and function everyday, I’d be pretty proud of myself,” Jennifer said. “I couldn’t do what he does. Him being here is enough to make me proud.”