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Fall 2000 Table of Contents
Versión Español de este artículo (Spanish Version)
By Blanche Stetler, Parent and Family Specialist, New Jersey Deafblind Project
In September of 1989 we adopted a little boy who we named Timmy. Timmy was 2 weeks old at the time, and, unbeknownst to us, was born to a mother who both drank and took drugs while she was pregnant. We found this out during a regular office visit to our pediatrician after our doctor had received Timmy's birth records from the adoption agency. Since then, we have been on a roller coaster ride between doctors, therapists, and educational professionals trying to get him the help he needs. Tim has both a vision and hearing impairment caused by Fetal Alcohol Syndrome. He also has Attention Deficit Hyperactivity Disorder (ADHD) and a Seizure Disorder. Even though he is now 11, developmentally he is at 5-6 year-old level. We have tried many different medications over the years to control his hyperactivity and seizures. It is an ongoing battle. It seems whenever he has a growth spurt, the medications no longer work, and we go on to something else.
Even though we knew Timmy's birth history when we started visiting neurologists, it still took many years for us to get a firm diagnosis of Fetal Alcohol Syndrome (FAS). We have compiled the following information over the years to help us. Some things were from doctors and others were from teachers, therapists, professionals, books, and support groups.
Children with FAS also have an increased occurrence of other physical problems that can be traced to their prenatal alcohol exposure, and can contribute to their overall disability. Additional eye anomalies can include ptosis (drooping eyelid), strabismus (deviation of the eye), and myopia (nearsightedness), as well as underdevelopment of the optic nerve, twisted retinal vessels and blindness. The high occurrence of hearing disorders in children with FAS is associated with alcohol induced developmental delays. Types of hearing loss may include sensorineural hearing loss and central auditory processing disorders associated with abnormalities of the brain stem. Misshapen secondary teeth are also common in these children.
It is always a safe bet to begin your information search for any syndrome or condition with Family Village. For their listing on FAS go to http://www.familyvillage.wisc.edu/lib_fas.htm. Here are three excellent resources listed at Family Village:
National Organization on Fetal Alcohol Syndrome
216 G Street North East
Washington, DC 20002
Phone: (202) 785-4585; Fax: (202) 466-6456
This is an excellent website for a variety of articles on FAS, including teaching strategies, tips for parents and much more.
Fetal Alcohol Education Program (FAEP)
Boston University School of Medicine
1975 Main Street
Concord, MA 01742
Phone: (978) 369-7713; Fax: (978) 287-4993
The Fetal Alcohol Education Program is dedicated to research and education for the prevention, identification and treatment of alcohol-related neurodevelopmental disorders. Among their materials available for sale are two teaching packages, one for education professionals entitled Alcohol, Drugs, and the Fetus: A Teaching Package (84 slides, a 65-page manual) and Here's to Healthy Babies for the education of parents and community groups (call or write for details). They have also developed a handbook for parents, FAS: Parent and Child ($7.50 per single copy; bulk rates available), and make a reprint list available.
Family Empowerment Network: Supporting Families affected by FAS/FAE
610 Langdon Street
Madison, WI 53703-1195
Phone: (800) 462-5254 or (608) 262-6590; Fax: (608) 265-2329
Family Empowerment Network (FEN): Supporting Families Affected by Fetal Alcohol Syndrome and Fetal Alcohol Effects is an international organization serving families and professionals. They provide: free informational packets on FAS/FAE; international resource/referral directory catalogued by state/province; quarterly newsletter, The FEN Pen; extensive loan library (videos, audio training tapes, books, fact sheets, etc.); trainings for parents and professionals; educational opportunities; an annual retreat for families; and an annual national conference. FEN is a program of the University of Wisconsin-Madison, Department of Professional Development and Applied Studies.
Some other nice resources suggested by Cheri Scott include:
see Clarifying a Point about Fetal Alcohol Syndrome for information about Fetal Alcohol Effect.
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