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Invisible disability

Ajeet Charate, director of the Illinois Center for Fetal Alcohol Spectrum Disorders, applies sensors that will help gather biofeedback data from 9-year-old Miliana Martens of Bensenville. Diagnosed with FASD, Miliana comes to the Naperville center with her mother, Bev Martens, for treatment.  |  Susan Carlman~Sun-Times Media
Miliana Martens, 9, who lives in Bensenville, undergoes treatment and therapy Sept. 25 at the Illinois Center for Fetal Alcohol Spectrum Disorders in Naperville, with help from therapist Noor Majeed.  |  Submitted

Facts

75 percent Segment of children in U.S. foster care believed to have been exposed to alcohol before they were born. 25 to 40 percent Estimate of the proportion of children in the juvenile justice system who have a fetal alcohol spectrum disorder. $741,432 Daily cost in Illinois for treatment, services and programming for people with an FASD. 90 percent Estimated proportion of children adopted from Russia who are on the spectrum. Source: National Organization on Fetal Alcohol Syndrome.

The kids aren’t all right.

Sometimes they exhibit emotional aberrations or a tendency to be socially awkward. In other cases, the effects can look like a mental disability or an attention deficit. Sometimes they’ve reached adulthood before the safety net can reach them — if it ever does.

Even many medical professionals are unfamiliar with fetal alcohol spectrum disorder, a condition sometimes called an “invisible disability” that affects an estimated one in 100 births and differs in significant ways from the better-known fetal alcohol syndrome. Both result from a fetus being exposed to alcohol before birth.

Ajeet Charate, an Indian physician and director of the Illinois Center for Fetal Alcohol Spectrum Disorders in Naperville, used to be among them. In 2005, he was directing a psychosocial practice in New Lenox through Trinity Services when he saw a patient whose FAS diagnosis belied the true problem: the individual had sustained the prenatal organic brain damage that results in FASD.

“What was surprising to us was that, because it’s a medical diagnosis, we weren’t paying attention to it,” said Charate, who established the state affiliate of the National Organization on Fetal Alcohol Syndrome in 2007 and moved his practice to Naperville two years ago.

He will be one of a half-dozen speakers at a daylong workshop set for Friday at College of DuPage. The conference is designed to share the latest information on the disorders, diagnosis, treatment options, symptom management and prevention efforts.

One challenge is that the spectrum presents in more subtle ways than the syndrome, which was first given a name just 40 years ago. People diagnosed with FAS typically have an unusually thin upper lip and have a virtually undetectable philtrum, the vertical groove between the nose and mouth. Eighty percent of those with FASD, on the other hand, show no physical abnormalities at all. And their behaviors can differ significantly as well, sometimes mimicking attention deficit disorder.

Often possessing above-average intelligence, people on the spectrum frequently have trouble understanding cause and effect, generalizing and learning from mistakes. Many have memory deficits, learning disabilities, poor impulse control and difficulty forming positive relationships. To compensate for those challenges, they often develop such secondary behaviors as lying, stealing, substance abuse and sexual promiscuity. Adolescents can be prone to running away and find it easy to gravitate toward strangers.

“The underlying behaviors are for escape and avoidance,” Charate said.

Many diagnoses of the spectrum occur in adopted children, particularly those born in Russia.

Bev Martens didn’t suspect at first that anything was amiss with either of her adopted children, biological siblings she brought home to Bensenville in December 2007. The Russian doctor who examined 8-year-old Michael and Miliana, then 3, had all but ruled out the possibility that either child had been affected by their mother’s alcohol use during pregnancy. It soon became evident to Martens that he was wrong about Miliana.

“I noticed pretty quickly,” she said. “Some little things were happening … I think her processing was the biggest thing.”

She took Miliana to the Children’s Research Triangle in Chicago, where the diagnosis was made quickly — but no treatment or other services were available.

“So I just went out on my own,” said Martens, who found out through online research about the Naperville center and Charate, who has been a “huge resource for information.”

Now Miliana, 9, and her mom participate in several programs at the Naperville center. Bev networks with other parents and receives parenting support, while Miliana receives a customized form of biofeedback therapy that rewards improvements in thought patterns. She also takes part in an hour of individual counseling each week, where she learns skills she can use to manage challenges. As a child with FASD, she has a limited capacity for doing that.

“There’s a difference between won’t and can’t,” Bev said. “To everyone else, they look like a normal child. They look like the child next to them, but their brains aren’t firing in the same way. ... FASD is very different from other challenges. I kind of feel as if it’s its own animal.”

The programs have brought improvement in the three years the Martens have been using the center.

“Her attention is better, her focus is better,” Martens said. “She’s been able to sleep, which she hadn’t been able to do.”

Much of the center’s work is aimed at helping parents and caregivers understand how to accommodate the issues that come with the spectrum. Breaking down behaviors and shining light on what causes them can help.

“It’s a challenge to raise these children,” Charate said. “Sometimes you lose your objectivity, and that affects your ability to respond.”

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Facts

75 percent Segment of children in U.S. foster care believed to have been exposed to alcohol before they were born. 25 to 40 percent Estimate of the proportion of children in the juvenile justice system who have a fetal alcohol spectrum disorder. $741,432 Daily cost in Illinois for treatment, services and programming for people with an FASD. 90 percent Estimated proportion of children adopted from Russia who are on the spectrum. Source: National Organization on Fetal Alcohol Syndrome.
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