|Parent News for May-June 2000|
Recognizes Fetal Alcohol
Syndrome Awareness Day
by Barbara Ferguson
September 9, 1999, was a day to remember for many thousands of families whose lives are affected by living with fetal alcohol disorders. Barbara Ferguson, Chicago area coordinator for this first-of-its-kind international observance, says that the date was selected to reinforce to the general public the crucial importance of a pregnant woman’s abstaining from alcohol during the full 9 months of her pregnancy to ensure that her child will be free of alcohol’s devastating effects.
According to research conducted at the University of Washington in Seattle, the greatest devastation occurs in children whose IQ and physical appearance meet all the norms and developmental expectations, but who, because of damage to their neurotransmitters, are rendered incapable of sound judgment, of distinguishing between right and wrong. These children appear to defy authority or become enraged at expectations that seem unrealistic to them. Parents and educators may not understand that this behavior occurs because these normal expectations are unrealistic for these children’s hidden needs.
In attempting to improve the behaviors and performance of all children affected by fetal alcohol exposure, protective factors of support and structure must be in place as constantly as possible. Those children with mental retardation and the obvious physical dysmorphology are frequently recognized as disabled from infancy and thus may have supports in place to enable them to function safely at home and in their community. While the everyday moments of their lives are still challenging for their families and caregivers, they are less prone to self-endangerment or endangerment to society than those who are held up to normal expectations and are "out there in the world" without protection against their own inclinations. These invisibly disabled individuals have Fetal Alcohol Effects (FAE).
What Barbara Ferguson, fetal alcohol specialist at Shore Community Services, and support group facilitator with Families Helping Families, is most concerned about is the large number of cases that go unrecognized. Much of the literature on the subject quotes an incidence of 1 to 3 per 1,000 births. However, Ann Steissguth, the world's leading fetal alcohol researcher, has found after a quarter century of study and work, that approximately one-half of the cases of Fetal Alcohol Syndrome go unrecognized. Even more frightening is that cases of Fetal Alcohol Effects, the invisible form described earlier, are about 4 times more common and are virtually undiagnosed in the world population, bringing the actual number to slightly more than 1 per 100 births—a startling figure.
Mrs. Ferguson says that an intensive compassionate effort to help pregnant women avoid drinking can result in a tremendous positive change in the social fabric of our society. She believes that elimination of the disorder would result in almost a 50% reduction in the number of prison cell occupants. Drug or alcohol rehab programs would be equally affected by this change, and teen suicides would be greatly reduced. She points out that approximately 82% of those affected are unable to function independently in adulthood, 94% experience mental illness at some point in their lives, and 60% drop out of school (although some do return for their diploma at a later time). The same startling number face imprisonment or residential treatment for substance abuse. Each of these unfortunate individuals costs the American taxpayers approximately $2 million dollars in a lifetime.
Ferguson's goal in the Chicago area is to increase awareness among those professionals in education, health care, mental health, and the justice system. She also has conducted workshops with teens to help youth fully understand the implications of this tragic yet preventable disorder.
Ferguson also notes that for those families currently raising a fetal alcohol affected child, support must be in place in health care and education, as well as in society overall, for without it, "they are living in a nightmare." Nearly, 80% of those children affected are adopted, and frequently the history of the birth mother's alcohol use is not known. Likewise, almost the same percentage of these children will appear normal, making prompt diagnosis impossible, and late diagnosis very rare.
Ferguson can be emailed at firstname.lastname@example.org or called at 847-864-5518. On weekdays, a voice mail message can be left at 847-869-6610, ext. 12.
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