Most people have heard of Fetal Alcohol Syndrome. It's a specific type of brain injury that carries with it specific physical characteristics, including abnormal facial features and stunted growth. But according to Deb Evensen, it's just one very small percentage of a larger disability.
Individuals with Fetal Alcohol Syndrome live with a disability known as Fetal Alcohol Spectrum Disorders, or FASD, said Evensen, director of Fetal Alcohol Consultation and Training Services, a Homer-based private consulting firm that offers assistance to schools, individuals, families and communities.
This disability can manifest itself in a variety of ways: It can cause damage to kidneys, the heart, eyes, ears or whatever part of the baby is developing when the mother takes a drink including the brain.
An individual with FASD can appear to have a total disregard for the rules or be manipulative. Teachers, members of the justice system, even doctors often mistake FASD for Oppositional Defiant Disorder or even Bipolar disorder.
Evensen says alcohol exposure during pregnancy is the leading cause of mental retardation in the western world, but most people born with FASD aren't mentally retarded.
"Most (individuals) don't have an IQ in the mental retardation range, they have an IQ in the average range, but they can't function in real life," she said. "It actually hurts them because we expect more of them than they're able to do. They're our most vulnerable students to bullying and they're our hidden treasure because if we can make the school system work for children with FASD it's going to be better for all of us."
Evensen said she thinks individuals with FASD often illuminate what's wrong with our school systems, our correctional systems and our social services systems.
And it's because of her belief that if the community pulls together to help these individuals, the whole community will be better for it, that she will make a trip to Kenai to educate the people on Fetal Alcohol Spectrum Disorders.
"Children with FASD: Navigating the Rapids to Adult Life" is a 12-hour training session that will take place from 4 to 8 p.m. Friday and continue from 9 a.m. to 5 p.m. Saturday at the Kenai Visitors and Cultural Center. Frontier Community Services will host the session.
The cost is $20. Graduate students with the University of Alaska Anchorage are eligible for a college credit if they attend. People may register by calling 714-6648.
"We saw the need for more information," said Vickie Tinker, the FASD program coordinator for Frontier Community Services. "We saw a lot of hurting families that didn't know what to do with these kids."
Tinker said the training session will talk about what FASD is, how it manifests itself in teenagers and how parents, teachers, probation officers, attorneys and social workers who deal with individuals with FASD can help them succeed as adults.
"Their brains are wired completely different, they don't think the same way other kids do," she said. "When we try to fit them in the box of what we think is normal, they don't fit very well. It causes a lot of heartache and a lot of failure for them and for us."
While all individuals with FASD need the community's support, Evensen said it's the kids who look like they could do better if they just tried that are most at risk for problems, including negative encounters with the justice system and early suicide.
Doctors are working on being able to screen children for FASD as infants, Evensen said. And even though the affects of FASD are permanent, if parents, caregivers and teachers teach children with FASD patterns that become habit when they're adults, they'll be able to function better.
Evensen said she'll talk specifically about the brain and how it functions. She said people will leave with an understanding of the current brain research that's available, as well as what practical solutions and techniques can be utilized to help make the transition from adolescence to adulthood smoother for individuals with FASD.
"We're also going to focus on recognizing success," she said. "What success with someone with this disability looks like at age 5, age 10, age 15, age 20 and age 30."
Evensen said she's spent more than 30 years as an educator and a specialist on behavior disorders. Her work with FASD spans Alaska, Canada, the Lower 48 and Japan, including international work on issues dealing with individuals with FASD. Now she works with the teachers, caregivers, judges and attorneys who work with FASD individuals and adults who have the disorder.
"I love individuals with FASD. I see how hard they struggle and how little it shows on the outside," she said.
"There's a Hopi prophesy: A spiritual leader of the Hopi nation prophesied that the time would come when a lot of Hopi children (would develop) specific physical characteristics very consistent with Fetal Alcohol Syndrome. The children were souls who had come to help the people and as the people work together to help the children, as a Hopi nation, they'll be healed. My experience is that anytime a group of people gets together to help individuals with FASD our communities become better for all of us."
Jessica Cejnar can be reached at firstname.lastname@example.org.
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