Larry and Laura Rorem call their two adopted children pioneers.
The Rorems adopted a girl with fetal alcohol syndrome in 1973, the year the term was coined. They adopted a boy with fetal alcohol syndrome three years later.
Both times, the couple was told their adopted children were healthy. They soon found out that wasn't the case.
"My son didn't want to be touched," said Laura, 57. "He was born with anger, but on good days he was the most delightful baby. It remains true."
Fetal alcohol syndrome is caused when mothers drink during pregnancy and often results in brain damage. It also can cause limited attention span, hyperactivity and difficulties with coordination, emotion and impulse control.
Alaska has the highest rate of the syndrome in the country. About 14 out of 10,000 infants in the state are born with the condition, according to state figures.
No amount of alcohol is safe during pregnancy, said Ric Iannolino, Juneau Fetal Alcohol Spectrum Disorder Team coordinator.
"The best way is not to drink when you are sexually active," Iannolino said. "Most women are not aware that they are pregnant in the first few weeks. This is a disability that is 100 percent preventable."
When their children were little, the Rorems worked with teachers to find creative ways their kids could overcome learning problems. Their children are now adults, and the couple has dealt with the legal system regularly when their children have been in trouble.
Over the years, the Rorems have advocated for service improvements for people with fetal alcohol syndrome. But they say each day is a struggle to look after their children and fight for them.
"Living with such a disability is a tremendous burden for them and for us," Laura. "We not only have to deal with their disability but also people's misunderstandings of us and our children."
The state has spent $29 million in the last five years on fetal alcohol syndrome, but it remains one of the most misunderstood disabilities, Iannolino said.
People with severe fetal alcohol syndrome sometimes have a flat nasal bridge, a short nose, a thin upper lip and a smooth philtrum - the area between the lip and nose.
"About 80 percent of people who have fetal alcohol syndrome don't have the facial features unique to their medical condition, because facial features develop in the first three months of pregnancy," Iannolino said.
"They can look very normal, but their brains are severely damaged," he said.
Alcohol can have a wide range of effects on a baby's brain, growth and body characteristics. These effects are called fetal alcohol spectrum disorders.
People with alcohol-related birth defects may have trouble with the law, drop out of school, develop mental illness or engage in inappropriate sexual behaviors. They also tend to become homeless or have substance abuse.
"Men with fetal alcohol syndrome often end up in jail because they don't know how to use judgment," Iannolino said. "Many of them become easy victims because they don't remember what happened and don't have the ability to say no. A woman can be raped by the same man because she meets him on a different street and she doesn't remember what happened."
About five of the eight patients living at the apartments of Juneau Alliance for Mental Health Inc. have fetal alcohol syndrome, said Clinical Supervisor Marla Siverly.
"Fetal alcohol syndrome just complicates our patients' mental illness," Siverly said. "Every morning, we go into their apartments. We make sure they take their medication and don't wear shorts when it snows outside."
Research has shown that people with fetal alcohol syndrome are more likely to avoid social problems if they are diagnosed early and raised in a stable and nurturing environment.
"An early diagnosis can help them at school," said Susan Hunter-Joerns, a neurologist who has diagnosed 30 people with fetal alcohol syndrome since she started her career in 1987. "Some children might need special help with their handwriting. Some may need a special aide to help them with learning. There are many things we can do to reduce their frustrations."
Hunter-Joerns said when her patients are brought to her clinic, they already stick out.
"Nobody knows what to do with them," she said.
Although they were not diagnosed until they were adults, the Rorems' two children with fetal alcohol syndrome are lucky. The couple has provided them with a structured and nurturing environment.
"You need to think out of the box to meet their needs," said Laura, who used to be a special-education teacher. "When our son was at grade school, he couldn't write if his pencil was not sharp enough. So we gave him a pen."
With their children now grown up, the Rorems are challenged to tell their children what to do. Their 28-year-old son has had trouble keeping jobs. He and two of his four children are living with the Rorems.
Their 32-year-old daughter's mental illness has become so serious that she is always at great risk of being harmed, or harming herself.
"They are teens forever and they are so much fun to be around," said Larry, pastor at Shepherd of the Valley Lutheran Church. "My son can create chaos but cannot deal with it. My daughter said she has a traffic jam in her brain."
The Rorems don't know what they are going to do with their children when they are too old to take care of them.
"Both of my children are still pioneers, because we are still trying to find appropriate intervention and accommodations," Laura said. "We will retire when the appropriate intervention and accommodations are in place."
I-Chun Che can be reached at firstname.lastname@example.org.
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