Raising a child with a Fetal Alcohol Spectrum Disorder can be heartbreaking.
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For years, Laura and Larry Rorem watched their adopted son struggle to get through school, often being humiliated. One teacher pinned his classwork to his shirt and made him wear it around school. Written on the paper with red ink was one big letter, an 'F.'
"She didn't understand he had an FASD," Laura Rorem said.
"If you don't know how to deal with FASD, it can bring out the worst in you," Larry Rorem added.
Last week, about 250 people gathered at Centennial Hall to discuss FASD and issues surrounding it.
The disorder is caused by alcohol, which is toxic to the nervous system. Although adults can process the chemical, fetuses can't. The chemical acts as a poison to the developing nervous system, stunting the entire system to a lesser or greater degree.
"Once it happens, it cannot be reversed," said Dr. George Brown of Glacier Pediatrics in Juneau. "Not drinking during pregnancy is the only way to prevent it."
Alaska has one of the highest FASD rates in the country, according to the Alaska Department of Health and Social Services. According to recent studies, 140 children in 10,000 are born with FASD in Alaska. More than 16 in 10,000 are born in Alaska with Fetal Alcohol Syndrome, the more serious of the disorders.
When Laura Rorem describes the brain of a child or adult with FASD, it is a stark contrast from a regular brain. FASD brains are smaller than normal brains. The neurons aren't completely developed, the lobes are sometimes unconnected and the brain may even be covered with holes.
Noticeable FASD birth defects can be mild, such as a slight reduction in a person's IQ level. Or they can be severe, such as heart defects, severe mental retardation and facial deformities. This is accompanied by comprehension and memory problems, behavioral problems, problems interpreting other people and loss of impulse control. The parents and loved ones of those with FASD have to act as an "external brain" to compensate for their shortcomings, Laura Rorem said.
"We are the wheelchairs for these brains," she said.
Many say that part of the tragedy of these disorders, in addition to the fact that they are totally preventable, is the reality that those who suffer from FASD can appear totally normal to the casual observer. Not knowing someone has FASD can lead one to think a victim of the disorder is lazy, disrespectful, disruptive or delinquent. The fact is, they simply do not have the ability to process the world like other people do, advocates say.
"They work so hard to keep the rules, but they can't," Laura Rorem said
Advocates say blaming mothers of the children with FASD is inappropriate.
"A large portion of the women who drank didn't know they were pregnant," said Ric Iannolino of the Juneau FASD Diagnostic Clinic.
Some of the worst effects of FASD, including Fetal Alcohol Syndrome, happen between the 18th and 24th day of pregnancy.
Many of the mothers are alcoholics and come from poor families of Native origin, Brown said. It can affect mothers who follow a "frontier mentality."
"Alaska is a state where people live fast, love hard and die young," Brown said.
Treatment of the disorder can be jarring, Larry Rorem said.
"I don't know what is more difficult - dealing with FASD or dealing with the systems," he said.
Iannolino said FASD suffers are treated by specialists who team together on an individual's case. Some sufferers of FASD learn to adapt to the world with guidance from their "external brain." Others never gain independence. Some become homeless. Others still, unable to deal with or interpret the world around them, wind up in prison.
Will Morris can be reached at firstname.lastname@example.org