By Matt Baker
Although completely preventable, alcohol-related birth defects affect countless Americans. For families with children with fetal alcohol spectrum disorders, life can be a constant struggle.
“Everything you do you have to fight for,” said Donna Haig of Magnolia, who has an adopted child with an FASD, explaining that from daily life to even getting a diagnosis and receiving beneficial services is an uphill struggle.
As the name suggests, FASDs include a wide range of physical and mental disabilities caused by prenatal alcohol exposure, most notably recognized in fetal alcohol syndrome. About 40,000 babies are born with symptoms of prenatal alcohol exposure every year, according to a 2003 report for the Fetal Alcohol Spectrum Disorders Center for Excellence.
“With fetal alcohol, each one of these individuals is different,” said Vivian Botka of Princeton.
Her daughter Kristy, 26, was adopted in 1984. Both in her physical characteristics and mental abilities, Kristy is a clear case of fetal alcohol syndrome.
“I’m the lucky mom,” Botka said. She explained that Kristy’s easily recognized disabilities made it easy for them to receive beneficial state aid and services, but other parents aren’t as lucky.
FASD advocates, such as the National Organization on Fetal Alcohol Syndrome, compare FASDs to an iceberg, in which the very visible cases of FAS, such as with Kristy, only make up a small portion of all the cases (see photos and caption below). The majority of problems, like the iceberg, fall below the water line and are not seen.
While a clinical diagnosis can be made through documented evidence of certain facial characteristics, growth deficits and central nervous system abnormalities, many who experience other alcohol-related disorders can experience mental and behavioral problems that can easily be confused with any number of other behavioral disabilities, such as attention deficit disorder, autism and oppositional defiant disorder, among others.
“Basically if the mother is willing to acknowledge that she consumed alcohol during pregnancy that can make things easier but often that doesn’t happen,” said Ajeet Charate, FASD program director/educator for NOFAS Illinois and Trinity Services Inc.
Because FASD awareness is relatively new, Charate said there often is too little focus on it during medical school, which can lead to physicians being unaware of signs of FASDs or not considering it during children’s examinations.
Illinois Valley Community Hospital pediatrician Dr. Cindy Running said she hasn’t had a lot of experience with FASDs in her local practice, but agreed it can be difficult to diagnose.
“Diagnosis is difficult because of the fact that it is also difficult to find specialists who are able to make this diagnosis. Most often, this will take a developmental pediatrician, neuropsychologist, child psychiatrist or others. To see these types of specialists, parents will have to travel at minimum to Bloomington, Peoria, Rockford or Chicago, and the evaluations are quite extensive. However, I cannot stress enough the importance of getting any child with concerns for delays into early intervention services, as this will improve their overall outcomes greatly as they get older,” Running said.
Haig adopted her 10-year-old son Robert when he was 3 years old, although at the time she didn’t realize he had a fetal alcohol spectrum disorder.
“We found out because a social worker came in to approve our house for more kids and said, ‘Fetal alcohol, huh?’” I said, ‘Whoa, tell me more,” Haig said, noting the social worker recognized the disorder through a slight deformity in Robert’s facial characteristics.
Similarly, Cinda Kierski of Princeton and her husband were foster parents when they took in their 11-year-old son Arlie and 9-year-old daughter Jodie, a pair of siblings, seven years ago. She was the children’s third foster parent in less than a month.
At the time, those who had come into contact with the children thought they were “un-adoptable” but didn’t know what their problem was, Kierski said.
“It was like pulling weeds to find out what was wrong with him (Arlie),” Kierski said.
Nevertheless, the Kierskis decided to take a chance and adopted. Through a lot of effort, they managed to find a mix of medication and discipline to keep the kids as safe and well behaved as possible.
“I didn’t have many supports to know what was wrong. It took a lot of years,” Kierski said.
Kierski and her husband have done what they could to add as much structure to the children’s lives to keep their rambunctious energy focused. When school lets out for summer and the children’s schedules open up, she keeps them busy with work on their farm.
Eventually she adopted a third child, Shanin, 4, who has the same birth mother as Arlie and Jodie and also has an FASD.
“My little one, she’ll have — they call them meltdowns,” Kierski said.
Haig’s son Robert is high-functioning. He plays baseball, rides bikes and generally acts like any other 10-year-old. It’s only recently that he has begun to show signs his peers are advancing beyond him developmentally.
“He can do most anything but it’s a brain-based disability,” Haig said.
Like many with an FASD, Robert is impulsive, prone to making bad decisions and rarely learns from his mistakes.
“In our house, it’s like you’re constantly on guard,” Haig said.
Parents can’t always be on guard at school or other public situations where their children may be on their own.
Even though the general public may be becoming more aware that it’s not wise to drink during pregnancy, the gamut of behavioral problems that can stem from an FASD are less well known, which can lead to teachers and other authority figures seeing a problem but not recognizing the underlying disability, Botka explained.
“They don’t see the whole picture. They only see Robert at school,” Haig said.
Those in the FASD community call it the “silent disorder” because they feel people often are unwilling to speak publicly about it, which only makes it harder for the condition to be understood by those outside the problem.
Botka said part of the reason there’s been a lack of discussion over FASDs might come from families not wanting to risk embarrassment at being labeled a birth parent of a child with an FASD.
“Shame and blame is put on birth mothers and we need to move away from that,” Botka said.
Botka knows firsthand. Not only is she the adopted mother of a child with FAS, she’s a birth mother of a child with an FASD.
The fact that prenatal alcohol exposure could lead to damaging side effects on a baby was only identified in 1973 and in the early 1980s when she was pregnant it still was unclear what level of drinking would lead to defects.
“I was just a social drinker and the message wasn’t very strong and it’s still not that strong today,” Botka said.
So, how much drinking is safe? Charate and the U.S. Surgeon General’s Office say the safest bet is none.
“It’s safe to say that women should not drink if they’re planning to get pregnant or if they do get pregnant. It’s safer to say they should not drink,” Charate said.
As organizations such as NOFAS continue to work to find support for those suffering from FASDs and to raise awareness that these preventable disorders are prevented, the “invisible disorder” continues to affect people in all walks of life.
“I think there’s a lot more people affected than we’ll ever know,” Haig said.
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