In February, Shepherd of the Valley Lutheran Church caught fire. The fire crawled into the belly of the building and burnt up through the wooden foundation and into a common room. Laura Rorem and the Rev. Larry Rorem liken a person with fetal alcohol spectrum disorder, or FASD, to a structure with a damaged foundation.
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"Unlike the repaired foundation of our church, however, the mind of person with an FASD is irreparable," says Laura Rorem, a longtime special educator, volunteer advocate and adoptive mother of two grown children with the disorder. "Although we can't repair the damage to a person with an FASD, we can identify the hole in the foundation with yellow caution tape, and work around the permanent damage. Of course, prevention of this 100 percent avoidable disorder is a priority."
The Rorems adopted two children with FASD in the 1970s and continue to travel a strenuous road.
Saturday is International FASD Day, a day that gained significance when a group of parents, many the birth and adoptive mothers of people with FASD, chose the ninth day of the ninth month of 1999 to bring attention to this disorder. The choice of the ninth month symbolizes the length of a woman's pregnancy.
Several events will take place on Saturday.
"A table at the high school will provide information, as well as demonstrations such as a chicken egg, a representation of a fetus' brain, being destroyed by alcohol. Thirty-nine baby bottles filled with alcohol will stand on the table and represent the equivalent of a mom drinking one drink a day during pregnancy," said Hanah Gabler, Juneau's International FASD Day events coordinator. She also works for the National Council on Alcoholism and Drug Dependence.
Volunteers will distribute napkins to bars that read, "During Pregnancy: No Alcohol, Not Even a Drop!" The Alaska Department of Heath and Social Services Office of FAS recommends that a woman stop drinking prior to trying to conceive and not drink at all during pregnancy.
At 9:09 a.m. on Saturday people are invited to honk their horns while churches and business can chime their bells.
"By doing this, we can acknowledge the problem. As a community however, we need to go further. A person with an FASD needs support their entire life," Laura Rorem said. "As a person with FASD becomes an adult, many problems begin to arise as the social supports they received as a young person disappear."
Many individuals fall into trouble. It is estimated that 50 percent of Juneau residents with FASD land in Lemon Creek Correctional Center.
"A person with FASD needs a lifelong support network. Beyond prevention and diagnosis, we believe a communitywide mentorship program is a step in the right direction in supporting people with FASD. A person with an FASD needs someone to help them get to appointments. A relationship with a person with an FASD can be extremely rewarding," said Rev. Rorem with a smile. "It is not a burden, and the non-affected person will grow."
Beyond honking horns and chiming bells, the Rorems would like people to consider becoming mentors. With some training, a mentorship with a person with an FASD would be like a big brother or big sister relationship.
To receive training in the field, a regional conference called an Overwhelming Opportunity is scheduled for January in Juneau.
Seminars and workshops are planned, covering subjects such as FASD and teaching, family, law enforcement, the maze of services, living in a village, sexuality and alternatives to incarceration, said conference organizing chairman K.J. Metcalf of Northern Light United Church. For more information on January's An Overwhelming Opportunity, please contact Northern Light at 586-3131.
"Governmental funding comes and goes. We need sustainable, community-based solutions to deal with this problem that affects us all." Laura Rorem is a contact who can begin the process of becoming a mentor. She can be reached at 586-6454.
One also can contact local, state and federal governments and encourage them to fund FASD programs through legislation.
"FASD knows no race, social or economic lines," says Ric Iannolino of the Juneau FASD diagnostic clinic. "Diagnosis of this invisible disorder can be difficult. However, once a person receives a diagnosis, life can become much richer. A diagnosis is key."
Birth mothers who consumed alcohol during pregnancy can make life for themselves and their children much richer by contacting the Juneau FASD diagnostic clinic. Once a child is diagnosed, he or she can receive the needed services.
"We do not want birth mothers to feel guilty," said the Rorems, echoing a sentiment throughout the FASD community. "We do want them to come forward and let professionals know they consumed alcohol while being pregnant, a step that makes diagnosis much easier."