Fetal Alcohol Spectrum Disorder (FASD) is not a mental health or medical diagnosis, but is a general term used to describe a variety of syndromes and disorders that can occur in a child whose mother consumed alcohol during pregnancy. . The effects and symptoms vary in severity. Many children share common effects that include emotional, physical, and learning difficulties. Common physical characteristics that can be associated with fetal alcohol spectrum disorder are facial deformities, growth deficiencies, heart, liver and kidney defects, vision and hearing problems, as well as permanent brain damage. FASD is the only 100% preventable cause of mental retardation and birth defects in the United States and FASD is 100% intractable. FASD is estimated to affect 40,000 babies each year. This is more than Spina Bifida, Down Syndrome and Muscular Dystrophy combined.
Alcohol damages the parts of the brain that give us memory, self-control, coordination, and judgment. Children with FASD often have difficulties with learning, attention, memory, central nervous system, and problem-solving skills that can have lifelong implications. FASD is a permanent condition and affects all aspects of the child’s life and the life of her family.
The emotional toll on families cannot be underestimated. For birth parents, recognizing that their child’s mental retardation, birth defects, and/or neurodevelopmental disorders are the result of the mother’s prenatal alcohol use is very difficult to cope with. For adoptive or foster parents, discovering that their child has FASD after years of trying to understand her cognitive and behavioral problems creates feelings of frustration and isolation.
As a foster parent, I can tell you that raising a child with FASD is the hardest yet most rewarding thing I’ve ever done. Andrew is now 13 years old and in seventh grade. He is sweet, generous, caring and very naive. He has also exhibited many of the symptoms associated with fetal alcohol spectrum disorder since the day we brought him home when he was 1 week old. He cried all the time! Until he was 3 years old and with medication he never slept more than 30 minutes at a time, day or night. To say that life seemed impossible is actually an understatement. He required constant attention and if he lost sight of him in another room for a minute, he would destroy it. If he wasn’t right next to him when he pooped in his diaper, he would take it off and smear feces all over the walls, carpets, and bed. We had to put a lock on our fridge because he would come out of his crib in the middle of the night and knock over everything in the fridge, staining the carpet, walls and beds. For years we knew there were serious problems, but no one could help us. All the professionals said that his behaviors were outside of his experience. We went from doctor to doctor, counselor to counselor, looking everywhere for answers for him and our family. At the age of three, he was kicked out of every daycare in our area, he went through at least 30 babysitters and couldn’t stay at Church’s daycare. He was very violent with everyone; however, most of his anger was taken out on me. He would bite me, hit me, and throw things at me. He would put holes in the wall, the windows, throw rocks at us as well as cars and basically he was never happy. When he started school, he started a whole new nightmare. On the 4th day of school he threw toys, supplies and destroyed the classroom running out of the room causing the teacher to have to leave other students to chase my 4 year old son. They transferred him to an emotional disability class where they had experience with other children like him.
By the time he was 5 years old, he had so many diagnoses I lost count, but none of them explained the severity of his behaviors. We tried 21 different medications and tried at least 4 different types of therapy. We started doing some research on the internet and found some sites about FASD and found that there were several places in the US that specialized in FASD. Andrew and I packed up, left my husband and two other children at home, and went in search of a diagnosis. We went to Baltimore, MD and saw a FASD specialist who finally gave her an accurate diagnosis of Fetal Alcohol Syndrome. Although we eventually had a diagnosis, no one seemed to be able to help us control his behavior and his behavior was getting worse. At the time, I was taking 7 medications, however none were effective. We searched the internet again and learned about Fetal Alcohol Spectrum Disorder and found a “serious” behavior clinic, the Marcus Institute, in Atlanta GA. They observed his behavior and immediately asked if we would be willing to come to Atlanta to live for a couple of months so he could attend the clinic. It was his observation that his behaviors were something that would never improve without extreme intervention. At this point we had no choice; each day it grew bigger, stronger and more destructive. After battling insurance complications, Andrew and I went to Atlanta, where he underwent eight weeks of treatment, testing, and training.
After two months of hard work, the severe behavior clinic was able to decrease her problem behaviors by 96.6% since we started the program. The skills we learned are skills we are still using to keep his behavior in check. While we still have bad days, now we also have good days. Now he can stay at school all day, with the help of a shadow, he can play baseball and soccer with other kids his age and he is happy.
Andrew, like most kids with FASD, will never be what others feel is “normal” and that’s fine with us because he’s a happy kid now. He is learning to read and little by little he is learning social skills. We had to adjust our expectations and learn to think “outside the box” when dealing with him and his problems. We’re living a pretty normal life, whatever that is. We are not cured in the traditional sense, but we are functioning and progressing. He has now stopped taking 5 of the 7 medications and has really grown physically and emotionally.
Most children with FASD have many problems to deal with throughout their lives. FASD behaviors are treatable, but not a curable condition that can be corrected with therapy or medication. There are some children who benefit from certain types of medicines, but the medicines only address some of the symptoms. Permanent brain damage cannot be repaired or medicated. Creative behavior management works well most of the time. Children with FASD have processing problems and cannot understand cause, effect, or consequences. One of the most important things I have learned from my son is to keep an open mind, a sense of humor, and faith in God.
