Hidden Heartache: Fetal Alcohol Syndrome’s Impact on Adoptive Families

When Barb Clark and her husband Michael adopted their oldest daughter Akila at 5 months old they never envisioned the difficult road ahead. What the Minneapolis, Minnesota-based Clarks couldn’t see when they rocked, fed and loved their infant daughter was the brain damage that she already had because of prenatal exposure to alcohol.

“As soon as she was walking and talking I knew things were a little off,” Barb said. “Consequences never worked for her, and she was 2 years old when she stole for the first time.

An article by Kim Phagan-Hansel of The Chronicle of Social Change

Retrieved from:  https://chronicleofsocialchange.org/featured/30079/30079

Michael and Barb Clark with their four children they’ve adopted. Their daughter Akila lives with a Fetal Alcohol Spectrum Disorder (FASD).

While “stealing” is a typical behavior for toddlers who don’t yet understand the concept, Akila’s early tendency to take things and to not learn from any consequences was concerning to the new parents. Other behaviors such as her high energy, attention-seeking and sleeplessness caused the couple to seek out guidance from medical professionals, but their concerns were often dismissed.

Finally, Barb began researching some of the behaviors online and found sites about Fetal Alcohol Spectrum Disorder (FASD). With research in hand, the Clarks sought out a new pediatrician who was more willing to listen to their concerns about their daughter. Finally, at age 6, Akila was diagnosed with Fetal Alcohol Syndrome.

Akila is one of the thousands of children in this country living with FASD, which is the umbrella term for Fetal Alcohol Syndrome (FAS), Alcohol-Related Neurodevelopmental Disorder (ARND) and Alcohol-Related Birth Defects (ARBD). While it’s unknown how many people in America have one of the disorders, the CDC estimates that up to 1.5 infants are born with FAS for every 1,000 live births.

Other studies of school-age children estimate 6 to 9 our of 1,000 children have FAS, which puts the occurrence at about half the frequency of autism. But a new study of 6,639 first-grade children by the National Institute on Alcohol Abuse and Alcoholism have bumped estimates to 11.3 to 50 per 1,000 children. According to the CDC, the lifetime [societal] cost for one individual with FAS in 2002 was estimated to be $2 million.

For the Clarks, parenting Akila has continued to be a challenge. They’ve had to learn along the way how to look at their daughter’s behavioral issues differently, recognizing that brain damage causes those behaviors. Over the years, they’ve had to adjust their parenting styles and how they respond to their daughter and her behavior. Even though Akila was 6 when she was diagnosed, it wasn’t easy to shift parenting techniques.

“It still took us several more years to wrap our brains around it,” Barb said. “We’re dealing with children with a brain injury that plays out very behaviorally.”

Now, Barb helps others understand the impacts of FASDs. As parent support coordinator for the North American Council on Adoptable Children (NACAC), Barb trains parents and professionals on a number of topics, including parenting children with FASDs. Much of that training is offered at foster care agencies and to foster parent groups.

 

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