Cheri Scott of Anchorage and Jeanne Gerhardt-Cyrus of Kiana in Northwest Alaska never intended to become lay experts on the issue of children exposed to alcohol while in their mothers' wombs.
But because each had adopted children born with Fetal Alcohol Spectrum Disorders, they came to see that the medical, psychological and educational systems in Alaska were unprepared to treat and educate their children.
Last year, the two mothers joined almost 40 local experts in support of a new training program here aimed at care providers who have contact with families of children with FASD. They got behind a proposal from a research and health-service unit of the University of Alaska Anchorage that was seeking funds from the federal Centers for Disease Control and Prevention to start up the Arctic FASD Regional Training Center.
The CDC awarded more than $1 million spread over three years to Behavioral Health Research and Services, the research center. Last fall the training center started up -- the fifth such center in the country and the first in Alaska.
FASD is among the most disheartening diseases because it is preventable, caused by the mother's consumption of alcohol during pregnancy. (FASD is a term used officially in the U.S. and Canada only since 2004. It refers to any prenatal exposure to alcohol and encompasses a range of disorders including fetal alcohol syndrome, which is characterized by a specific set of abnormal facial features, smaller body size and problems in the central nervous system.)
Alaska is a heavy-drinking state, and one of every four Alaskans dependent upon or abusing alcohol is a woman, according to statistics supplied by BHRS. One of every 25 women whose babies are born alive says she drank while pregnant.
The training center will offer education and training suited to Alaska's geographically vast rural, frontier region and its culturally diverse population. One key aim is to help women stay sober if they're pregnant or might get pregnant.
The trainers hope to teach psychologists, social workers, speech and language pathologists, substance abuse counselors and other providers how to talk to women of child-bearing age who are sexually active and drinking. These women need to know they could alcoholically poison the fetus before they even know they're pregnant.
Beyond prevention, families, caregivers, educators and others should know how to reduce or eliminate secondary problems such as mental health issues, school absences, law breaking, inappropriate sexual behavior and substance abuse.
For this to happen, the whole community must be educated, said Gerhardt-Cyrus, the mother from Kiana. For Gerhardt-Cyrus and her husband, raising FASD children in a village of 300 where no one knew about the disorder was frustrating.
"I'm a former special-ed teacher," she said. "I taught severely and profoundly handicapped people, I worked with adults and youth. ... I have more knowledge than I would bet anyone else in this region, and if I can't get the services, how does anyone else have a prayer"
The kinds of services Gerhardt-Cyrus says are sorely needed and that the new center will provide include education for substitute teachers, for example. A teacher with the right training, Gerhardt-Cyrus said, should know that if a child hides beneath the desk when a math lesson begins -- as her daughter did -- it may be because she fears math because of an inability to focus or adapt to that particular learning process.
For Cheri Scott and her husband, who as foster parents accepted a severely disabled 5-month-old child with FAS into their home and later became his adoptive parents, the hope is that the training center will help people understand that a treatment plan, a life plan, is entirely possible for youngsters like her Justin.
"Research shows that if you know about (FAS), you can ... support them, get them involved so you can amplify their strengths, get them to know they're not stupid, they can learn to advocate for themselves."
Peter Porco writes for UAA and does an occasional article on research at the university for the Daily News.
By PETER PORCO
Daily News correspondent