Visible Child With Invisible Disabilities

Ruzanna Harutyunyan's picture
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When David and Tammy Atkinson of Kaysville adopted their son Schylar at age 16 months, they knew his birth mother had used drugs and alcohol. They knew he would have learning disabilities. But they didn't know all the other profound effects the alcohol use would have on their family and especially on Schylar.

"We were worried about the meth and heroin," says Tammy. "But it was years before we finally learned that the severe brain damage he has is a result of Fetal Alcohol Syndrome."

Now six years old, Schylar has pica, an uncontrollable urge to eat non-food items, like his own diapers, glass, and rocks. He has ADHD, Asperger's Syndrome and OCD, which is so severe he chews his fingers and toenails to the point of bleeding. His parents are sharing their story to warn pregnant women and girls of the dangers of drinking.

"Schylar suffers every day of his life, angry and confused about why he does what he does," says Atkinson. "So please tell everyone you know who drinks and is pregnant or thinking about having a baby to get help for their addiction," she pleads.

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Also know as FAS, Fetal Alcohol Syndrome is just one of a set of conditions called Fetal Alcohol Spectrum Disorders (FASDs), which are the number one known cause of birth defects and intellectual disabilities. Forty-thousand babies are born with FASD in the U.S. every year – and the majority of them are adopted by unprepared families.

"No one knows how many drinks it takes to cause FASDs," says John C. Carey, Medical Director of the Utah Department of Health and University of Utah's Pregnancy Risk Line. "These children have heartbreaking, lifelong problems that are 100 percent preventable," said Carey. "If you don't drink when you're pregnant, your baby will not have FASD."

Some children have facial or other physical deformities that alert doctors to FAS, many don't, which means parents lose precious time struggling to get them diagnosed. That's why babies born to mothers who drink are called ‘visible children with invisible disabilities.' September 9 is Utah Fetal Alcohol Spectrum Disorders Awareness Day. A primary goal of the observance is to let women know they can get help to quit their addiction.

"Utah's substance abuse treatment programs provide services designed especially for women," said Becky Barnett, Program Manager for the Utah Division of Substance Abuse and Mental Health. "And pregnant women get priority admission, where they will find a continuum of services ranging from pre-treatment to residential services."

According to The Lewin Group, considered the gold standard for determining health care costs, the average lifetime cost of caring for a child with FASD may be higher than $2 million. The group also estimates the lifetime cost to the state Utah for medical treatment, special education, and home and residential care for children with FASD could be as high as $27 million.

"The emotional cost to families is high, too," says Schylar's mother. "Still, even if we had known about FAS, we would have adopted Schylar, and we live for those moments when he is happy," she adds. Atkinson gives much of the credit for those times to his three older sisters. "The love and support of siblings for families like ours can't be underestimated."

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Comments

This is a tragic yet very moving and encouraging story. Thank god there are good people like the Atkinsons to take care of children like Shayler