DECATUR — When Allen and Kathy Kilzer laid eyes on their son in an Iowa hospital minutes after his birth on May 31, 1996, he looked perfect.
“We were excited,” Kathy Kilzer said. “His hair was reddish blond like it is now, and he was very cute.”
After bringing their son home to Decatur, however, they noticed his development lagged behind that of other children. Parker didn’t sit up until 10 months and walk until his second birthday.
Suddenly, it seemed significant that his birth mom drank alcohol during her pregnancy, and he was diagnosed at age 2 with fetal alcohol syndrome, one of four types of fetal alcohol spectrum disorder, with strong autistic tendencies.
Today, at age 16, Parker is impulsive, has poor motor skills and says only a handful of words. His ability to understand speech is often incomplete and delayed.
“His mom said she was a borderline alcoholic, but at the time, that didn’t mean anything to us,” Allen Kilzer said.
The myth that alcohol consumption is somehow safer during pregnancy because it is a legal drug is a major reason an estimated 10 of every 1,000 babies born in the United States have the disorder.
Ajeet Charate, director of Illinois Centers for Fetal Alcohol Spectrum Disorder, said most people don’t know that alcohol is more harmful to a developing brain than street drugs. “The problems caused by cocaine or heroin tend to go away, but those caused by alcohol get worse over time,” he said.
Charate was speaking at Macon Resources Inc. during a recent training attended by agency employees, special educators, social service providers and parents.
Allen Kilzer learned, for example, that Parker’s condition was caught unusually early. Many children with the disorder are not identified until age 7, 8 or 9, when their social and behavioral deficits become obvious.
Such children exhibit poor judgment and often no understanding of how impaired they are. Physical signs that could lead to earlier identification, such as absence of a groove between the upper lip and nose and a flat midface, are not always present and can even disappear as the child grows older.
“It’s hard to explain it,” Kilzer told the group. “Our son is like a car that’s wired up all wrong. You turn on the radio, and the windshield wipers come on.
“Interacting with him is kind of like a TV interview via satellite. The interviewer will ask a question, then there’s a delay before they answer back.”
That delay, Charate said, is caused by the difficulty the brain’s two hemispheres have in communicating, and this also why children with the disorder usually can’t make the connection between their behavior and its consequences.
He said outcomes are better when the child is diagnosed before age 6, lives in a stable and nurturing home and gets developmental disabilities services for a co-occurring condition. Unfortunately, fetal alcohol spectrum disorder is not yet a formal diagnosis that makes someone eligible for services.
Children with the disorder are many times more likely to end up in foster care and sentenced to prison as adults.
“Forty (percent) to 50 percent of inmates have FASD,” Charate said. “If they start diagnosing them, they won’t know what to do with them.”
While Charate stressed that getting expectant mothers to avoid alcohol during pregnancy is the first line of defense, he said there is a study under way at the University of Minnesota to see if administering choline bitartrate to preschool children can help their brains recover.
Intensive training for parents and other caregivers can also help. So can neurocognitive habilitation for the child to help him or her with self-control or Project Bruin Buddies training to help with social skills.
A comprehensive approach used at Charate’s centers combines assessment guided neurofeedback with fetal alcohol spectrum disorder training and ongoing behavioral consultation.
The Kilzers say they seldom go out, except to work, and that Parker’s behavior has been better since an optimum drug therapy, including a mood leveler and a seizure medication, was achieved five or six years ago.
“Sometimes, he’ll answer you, sometimes you get that delayed reaction, and sometimes you never get an answer out of him,” Allen Kilzer said. “Sometimes our biggest struggle is keeping in mind he’s also a 16-year-old boy and could just be ignoring us.”
The couple says a combination of speaking and sign language works best for communication. They are proud of the medals Parker has won competing in Special Olympics and their son can still surprise them.
One summer, Parker kept signing “fire” and “work” until they understood he wanted to go see fireworks. “He’s actually a smart kid and will come up with stuff,” Allen Kilzer said.
Parker is a sophomore at MacArthur High School and in the school’s life skills program. The Kilzers say they’ve seen so many children whose disabilities are more severe.
“Our lives are not terrible. You get used to whatever you have,” Kathy Kilzer said.
“Sometimes God will bring people into your lives so they can know Christ, too,” Allen Kilzer said. “We feel blessed.”