What is fetal alcohol and what does it have to do with me?

Fetal alcohol spectrum disorder (FASD) is not a mental health diagnosis or a medical diagnosis, but it is an umbrella term used to describe a variety of syndromes and disorders that can occur in a child whose mother used alcohol during pregnancy . Effects and symptoms vary in severity. Many children share common effects that include emotional, physical, and learning difficulties. Common physical features that can be associated with FASD are facial deformities, growth deficiencies, heart, liver, and kidney defects, vision and hearing problems, and permanent brain damage. FASD is the only 100% preventable cause of mental retardation and birth defects in the United States, and FASD is 100% untreatable. FASD affects an estimated 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 lifelong 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 issues creates feelings of frustration and isolation.

As an adoptive parent, I can tell you that raising a child with FASD is the hardest yet most rewarding thing I have 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 FASD 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 on 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 even a minute, he would destroy her. If he wasn’t right next to him when he defecated in his diaper, he would take it off and smear feces on the walls, carpets, and bed. We had to put a lock on our refrigerator because he would come out of his crib in the middle of the night and knock over everything in the refrigerator, staining the carpet, walls, and beds. For years we knew there were serious problems, but no one could help us. All of the professionals said that his behaviors were outside of his experience. We went from doctor to doctor, counselor to counselor, searching 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 in Church’s daycare. He was very violent with everyone; however, most of his anger was taken out on me. He bit me, hit me and threw things at me. He made holes in the wall, the windows, he threw stones at us, as well as at the cars and basically he was never happy. When he started school, he started a whole new nightmare. On the fourth day of school he threw toys, supplies and wrecked the classroom running out of the room causing the teacher to have to drop off other students to chase my 4 year old son. They transferred him to an emotionally handicapped class where they had experience with other children like him.

When he was 5 years old, he had so many diagnoses that I lost count, but none of them explained the seriousness of his behaviors. We tried 21 different drugs and tried at least 4 different types of therapy. We started researching on the internet and found some sites about FASD and discovered 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 FAS. Although we finally had a diagnosis, no one seemed to be able to help us manage his behavior and his behavior was getting worse. At that time, I was taking 7 medications, however, none of them were effective. We went back to searching the internet and learned about FASD and found a “serious” behavioral 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 that 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; every 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 their problem behaviors by 96.6% since we started the program. The skills we learned are skills we are still using to keep their behavior in check. While we still have bad days, now we also have good days. Now he can stay in 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 is slowly 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 making progress. 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 medicine, but the medicine only addresses 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.

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