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Fetal alcohol effects linger among adults in Alaska

Condition often leads to developmental, cognitive disabilities

Posted: Tuesday, January 01, 2008

ANCHORAGE - Justin Scott sits at his dining room table dabbing pink frosting on a snowman sugar cookie and humming "Silent Night." The chaos of his young niece and nephew decorating their own cookies bubbles around him.

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If the 20-year-old could sing to his family maybe he would. But Justin can't form the words to talk. His best communication is through jerky motions of American Sign Language.

There are a lot of things Justin can't do.

Developmentally disabled and cognitively about 6 years old, Justin is an adult face of fetal alcohol syndrome. That he has made it this long still awes his adoptive parents, Allan and Cheri Scott. He was considered a "successfully resuscitated miscarriage" on his birth papers when he was born three months early with a .237 blood alcohol level - that's three times the legal limit for an adult driver.

There are hundreds of young people like Justin in Alaska, and thousands more that don't look as if they have suffered damage from their mothers' drinking during pregnancy but show other telltale signs, the invisible disabilities - the poor reasoning and judgment, the hyperactive behavior, the poor coordination.

Alaska has one of the highest rates in the country of fetal alcohol syndrome and fetal alcohol spectrum disorders, an umbrella term that encompasses less severe cases than FAS. The rate in Alaska is five times higher than Arizona, for instance, and four times higher than New York, according to the Centers for Disease Control and Prevention. About 160 infants are born each year in Alaska with FAS or other effects from maternal alcohol use, according to state figures. Part of the reason for this is that Alaska has one of the highest rates of alcoholism in the country.

Justin's biological mother was living in a tent near the Alaska Native Medical Center when she went into labor and a fellow homeless person told her to go to the nearby hospital. She was so intoxicated that it took her newborn 2-pound baby four days to dry out.

Justin was her third child born with effects from her drinking. Justin's older sister would end up in a mental health facility. His other sibling ended up in the care of his mother's family.

Justin's mother visited him while he was in the hospital for the months following his birth but either didn't want him or just couldn't care for him, so the state stepped in. She died when he was about 1 year old; her stomach hemorrhaged, a complication of her alcoholism.

The Scotts took in Justin when he was just a baby. They were a medical foster family and had dealt with tough situations before. When he was 3 years old, they adopted him into their family of four - Cheri, Allan, and their two biological children, teenagers at the time.

At first, taking care of Justin meant waking up every two hours to feed him. But with time, the Scotts learned to continue with their lives - with Justin always near them, literally. When the Scotts take their Harley Davidson for a spin, Justin sits in a sidecar.

Back in the dining room of his Hillside home, Justin and his niece, 9-year-old Rosebud, and his nephew, 4-year-old Curtis, listen to Cheri, a woman who strikes one like the type born to be a mom, with a soft voice and seemingly endless patience. She helps them choose among the different shaped cookies, including the Christmas tree, the candy cane or the airplane.

Later, Justin will eat his dinner and take his shower before going to bed, but for now, this is the family fun.

"Oh, Justin, you got a letter from Crystal!" Cheri says, getting right up close to Justin so he can see her in his vision, which is limited to about two feet away.

She hands him the printed letter, highlighted in fluorescent pink. He looks at her and a smile crosses his face. He signs the word for "soft" using both hands. "Soft" is Justin's way of saying he likes something.

Crystal is Justin's girlfriend, a 32-year-old woman with FAS who is cognitively about the same age as him. They met at an FAS camp three years ago. The pair see each other about twice a year and correspond often, both sets of parents helping them communicate. Their affection is usually limited to holding hands but once Justin did kiss her on the top of her head, Cheri said.

"For us, we feel so lucky that they found each other," Cheri says. "They want a friend."

Justin has learned to read and type through his Alternative Career Education program with the Anchorage School District, designed to help children like him to learn life skills. When he turns 22, Justin will transition from spending his days at school to a state-funded adult program through the Division of Vocational Rehabilitation.

Living with FAS has drastically changed the lives of the Scotts. Cheri admits it hasn't been easy and often means she is taking care of Justin and not herself. But she's also learned a lot from her sensitive son, she says. He taught her not to raise her voice, and to treat others with kindness; if she doesn't, he senses it and will cry.

"People treat him differently. They are gentle with him," says his father, Allan. "I think he brings that out in people."

In Alaska, 14 percent of women of childbearing age had been binge drinking within a month of a 2005 study, according to the CDCP.

The total lifetime cost of providing services to an individual with FAS is estimated at $3.1 million. That includes medical costs, therapies and residential care. In 20 years, Justin has had 22 operations.



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