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Life on the Spectrum

With two kids on the autism spectrum, every day for the Kilgore family is filled with challenges and victories.

Linda and Tad Kilgore always thought there was something quirky about their son James.

"When James was in pre-k, he came to me and said, 'Mom, can you teach me how to make a friend?'" said Linda. It wasn't until James was in the second grade that he was diagnosed with Asperger's Syndrome. James is now in the eighth grade at Hull Middle School.

Asperger's is on the spectrum. Children with Asperger's often have trouble in social situations, may not be able to pick up on social cues like body language, understand tone and pitch and often avoid making eye contact. James demonstrated some of these signs and others. "He couldn't let go of pretend," said Linda of an exercise her oldest son did with his class in elementary school.

The Kilgores thought their youngest son Kent was a typical child. However, he was later diagnosed as PDD-NOS or Pervasive Developmental Disorder-Not Otherwise Specified, also on the autism spectrum, along with bi-polar disorder. Linda says Kent, now in 5th grade at the was diagnosed after he got in trouble while at Chatahoochee Elementary School. "Basically, Kent will get upset and not be able to function in a large crowd," explained Linda. "He does better in small classes for the most part, but there are times when he will get aggressive and explode."

To prevent Kent's explosions, he carries with him a lanyard with a series of numbered and color-coded cards. Each card has a different emotion and what the appropriate response should be. Since James is older, he has a color-coded bookmark which he can pull up out of the book and discretely show his teachers which level he is on.

One of the coping techniques used include letting the children go for a walk to release stress. "Sometimes James' teachers will give him an empty envelope and ask him to take it to the office" said mom Linda.Kent also uses sensory techniques to help him cope. He has a box full of items like stress balls on each floor of the house. Linda says he also likes "chubbing," which place pressure deep within the muscles when she squeezes him on the arm.

The Kilgores try to expose their sons to the world to help prepare them for when they grow up. "Get them out there, make them socialize," said Linda. Both James and Kent have friends who are not on the spectrum. In fact, Kent spent much of the time during the interview playing with a next door neighbor. "Be their friend, find out what to do. It's not that hard," says Linda. She has no problem letting her children go to neighbors' homes saying people on her street know how to react should something happen.

While the Kilgore brothers are high functioning, there are still struggles for the family. "Going to the supermarket with them is a struggle," said Linda. "All the stimulation form the lights and products, but to the tenth degree." Because of that, the boys rarely go to the store with their mother.

Amusement parks are also out of the question. Which is why the family is looking forward to the at the . The fair will include activities specifically tailored for those who are sensory sensitive.

The boys look forward to the event every year and their grandparents will even be coming in to town from South Carolina for it.

The Race and Festival will benefit Spectrum, an organization which helps families of children with different levels of autism. "It is amazing to see the difference a dedicated group of volunteer parents have made in our community for those impacted by autism," explained Spectrum President Claire Dees. "What started as just a  parent support group and have grown to provide 7 weeks of summer camp,social skills groups 3 times per month, weekend overnights, respite programas and more. We serve over 650 families touched by autism in Gwinnett and surrounding counties and serve children ages four to adulthood." 

Linda says Spectrum's respite program is a big help since parents of children on the spectrum never get a break. "Tad and I never get to go out together. It's always just one of us. He'll go there and I'll stay with the kids and then I'll go out." Linda says they can't leave James and Kent with a babysitter because they never know how the boys will react.

James and Kent, like other children their age, like school and have dreams "I have a bunch of great teachers," said James. But his favorite subject is math. "I just kind of clicked to it. For some reason I like working with numbers." The older brother is not quite sure what he wants to be when he grows up yet, but he does know for sure "I want to big things in life. I want to use what I'm good at. Particularly math and science."

Kent, who is a little more shy than his big brother tells me he also wants to pursue a career in science as a paleontologist by pointing to the cover of a book about dinosaurs.

Before leaving the Kilgore home, James and Kent thanked Patch for doing a story on autistic children and their families. "It's important that they (people) understand why we are who we are," said big brother James.

Trish Gates October 03, 2011 at 02:04 PM
I volunteered at this event and it was a great event for sure. Everyone I spoke to enjoyed it and I am sure it will be bigger next year

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