Autism creates struggle for Kamas family
April 7, 2009
Kamas resident Justin Bailey, who suffers from autism, hasn’t been to school in about six years.
The 20-year-old was forced to drop out of South Summit High School after he unexpectedly left class one day about a month into his freshman year.
"That was dumb leaving class," Bailey said in an interview at his home April 2, which coincided with World Autism Awareness Day.
But an aide who was supposed to watch her son that day should have stopped him from leaving, said Kamas resident Jen Bailey, Justin’s mother.
"He walked out of the classroom, up to the officer that was on campus and told a joke that sounded like some sort of terrorist threat, and that was it," the 40-year-old mother said. "It was just lack of understanding about the condition."
In school, Justin explained that his autism kept him from meshing with his peers.
Recommended Stories For You
"I couldn’t quite feel right," he said. "I had a runny nose and I had pills, and it was difficult."
Autism is a brain disorder, which impairs communication and social development, for which there is no known cause or cure.
"They need to know more about autism," Justin said. "There are a few thousand autistics in America I just wonder if we could help autism to keep our place intact."
Events like World Autism Awareness Day spotlight the roughly one in every 150 children who medical experts estimate are diagnosed with the disease
"Autism has gained a lot of attention. Still, a lot of it focuses on autistic children, and not what happens when they grow up," said Jen Bailey. "It doesn’t go away. It just becomes a little different."
An autism diagnosis can devastate a family.
"It is an actual mis-wiring of the brain," Jen Bailey said. "What causes the mis-wiring, who knows? You obviously work, but the connections aren’t quite where they’re supposed to be."
Sadly, the public school system left Justin behind when educators in the South Summit School District were unable to manage his disability, she said.
"He’d go after his brother with his teeth. What if he did that with another child? He wouldn’t last long," Jen Bailey said. "His education was a battle, in large part, because they wanted to mainstream him and it’s not in his best interest to do it. He learned very little unless you could give him one-on-one time."
Meanwhile, twice in the past year Justin has wandered away from his home spending chilly nights outside alone, his mother said.
"When he takes off like he does, it’s a flight-or-fight response. Most of us don’t think on a level that would cause us to do that, unless we were in imminent physical danger," Jen Bailey said. "While I can understand the concept, what exactly is going on his mind when he does this, is not something that I probably am ever going to come up with."
Searchers used dogs and a helicopter to locate Bailey when he disappeared in March and June 2008. When her son was found last summer, Jen Bailey said she couldn’t afford to buy the electronic ankle bracelet needed to monitor his whereabouts.
"I’m about ready to buy a tracking device so they can find me quicker," Justin said. "I’m just not wanting to do this again, there is no need to."
Soon an electronic monitor will be attached to his body, his mother said.
"I know there are a lot of people out there in similar circumstances. You get stuck in this and you rearrange your whole life to accommodate it," said Jen Bailey, who is currently unemployed.
Justin is constantly supervised by at least one parent.
"We watch him very closely," Justin’s father, 44-year-old Ray Bailey said.
Taking care of Justin means he works during the day while Jen worked at night before losing her job.
"One of us is always here in order to deal with him," Jen said. "How far is your income level going to advance during the graveyard shift?"
Medicaid helps pay for Justin’s prescriptions and doctor visits.
"We’ve pretty much resigned to the fact that this is how it is. I’m 40 years old and I won’t be going back to college to get a degree," Jen said. "A caretaker to watch him would make more an hour than I do."
Ability Center offers hope
Money the National Ability Center offers to people with autism can help those earning less pay for a weeklong summer camp in Park City, certified recreational therapist Tracy Meier said.
"Part of the mission of the Ability Center is to offer affordable recreation, so we offer scholarships to people," Meier said. "You can get a full scholarship to come up and ski for five weeks or to come to camp for a week."
Between six and 18 people with autism participate each week in rock climbing, horseback riding, yoga and gardening, Meier explained.
"I talk to parents who say this has changed their child’s life, and that can change the whole family," she said. "The parents never thought their child would ride a horse or go to camp. They build confidence and they build this relationship and things do improve, and that’s the really cool part of it."
But working parents understandably lack the time necessary to provide recreational opportunities under such challenging circumstances, Meier said.
"These parents first are trying to find out what is the cause of autism It’s amazing the success that you can have if you have the patience and the time for it," she said. "So many parents have found great reward from these children with autism that is has taught them so much about themselves."
Registration is underway at the National Ability Center for summer camps for people with autism.
"We’re putting them into an environment of really new experiences. I’m going to ask them to really step out of their comfort zone," Meier said. "It’s a really big process of finding out what their goals are and helping them learn how to use appropriate behavior."
But participating builds self esteem and social skills, Meier stressed.
"Everybody should be able to find something that they love in life, and to recreate," she said. "But certain therapists and different therapies are expensive. Getting tutors and special one-on-one assistance is all really expensive, but can be really beneficial."