Fetal Alcohol Spectrum Disorder, (FASD) is not a mental health diagnosis or a medical diagnosis but is an umbrella term used to describe a range 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 the common effects which include emotional, physical and learning difficulties. The common physical characteristics that can be associated with FASD are facial deformities, growth deficits, heart, liver, 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% untreatable. It is estimated that FASD affects 40,000 infants each year. This is more than Spinal Bifida, Down Syndrome and Muscular Dystrophy combined.
Alcohol damages the parts of the brain that gives us memory, self control, coordinator and judgment. Children with FASD often have difficulties with learning, attention, memory, central nervous system, and problem solving skills that may have lifelong implications. FASD is a permanent condition and affects every aspect of the child’s life and the life of their family.
The emotional toll on families cannot be underestimated. For birth parents, acknowledging that their child’s mental retardation, birth defects, and/or neurodevelopment disorders are a result of maternal prenatal alcohol consumption is very difficult to face. For adoptive or foster parents, discovering that their child suffers from FASD after years of trying to understand his cognitive and behavioral problems results in feelings of frustration and isolation.
As an adoptive mom I can tell you raising a child with FASD is the hardest but the most rewarding thing I have ever done. Andrew is now 13 years old and is in the seventh grade. He is sweet, generous, loving and very naive. He also has exhibited many of the symptoms associated with FASD since the day we brought him home at 1 week old. He cried all the time! Until he was 3 years old and on medication he never slept for more than 30 minutes at a time, day or night. To say life seemed impossible is actually an understatement. He required constant attention and if I let him out of my sight in another room for one minute he would destroy it. If I was not right beside him when he had a bowel movement 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 refrigerator because he would climb out of his crib in the middle of the night and dump everything out of the refrigerator smearing it in the carpet, walls, and beds. For years we knew that there were serious problems, but no one could help us. All of the professionals said that his behaviors were out of their expertise. We went from Doctor to Doctor, counselor to counselor and searched everywhere for answers for him and our family. By the age of three, he was thrown out of every daycare in our area, went through at least 30 babysitters, and could not stay in the nursery at Church. He was very violent toward everyone; however most of his rages were taken out on me. He would bite me, hit me and throw things at me. He would put holes in the wall, windows, threw rocks at us, as well as the cars and was basically never happy. When he started school a whole new nightmare started. The fourth day of school he had thrown toys, supplies and destroyed the classroom than ran out of the room causing the teacher to have to leave other students to chase my 4 year old. He was moved to an emotionally disabled class where they had experience with other children like him.
By the time he was 5 he had so many diagnoses I lost count, but none of them actually explained the severity of his behaviors. We had tried 21 different medications and tried at least 4 different kinds of therapy. We started researching the internet and found a few sites about FASD and found that there were several places in the USA that specialized in FASD. Andrew and I packed up, leaving my husband and other two children at home and went in search of a diagnosis. We went to Baltimore, MD and saw a FASD specialist that finally gave him an accurate diagnosis of Fetal Alcohol Syndrome. While we finally had a diagnosis nobody seemed able to help us get his behavior under control and his behavior was getting worse. At that time, he was on 7 medications however none were effective. We went back on the internet searching and learning about FASD and found a “severe” behavior clinic, The Marcus Institute, in Atlanta GA. They observed his behaviors and they immediately asked if we would be open to coming to Atlanta to live for a couple of months so he could attend the clinic. It was their observation that his behaviors were something that would not ever get better without extreme intervention. At this point we had no choice; he was getting bigger, stronger and more destructive everyday. After fighting insurance complications, Andrew and I went to Atlanta where he underwent treatment, testing and training for eight weeks.
After two months of hard work the severe behavior clinic was able to decrease his problem behaviors by 96.6% from when we first started the program. The skills we learned are skills we are still using to keep his behavior under control. While we still have bad days, we also now have good days. He is able to stay at school all day now, with the help of a shadow and he is able to play baseball and football with other kids his age and he is happy.
Andrew, as well as most FASD children will never be what others feel is “normal” and that is okay with us because he is now a happy little boy. He is learning to read, and is slowly learning social skills. We had to adjust our expectations as well as learn to think “outside of the box” when we are dealing with him and his problems. We are living a fairly normal life, whatever that is. We are not healed in the traditional sense but we are functioning and making progress. He is now off of 5 of the 7 medications and has really grown physically and emotionally.
Most children with FASD have many issues to face their entire lives. FASD behaviors are treatable but not a curable condition that can be fixed with therapy or medication. There are some children who benefit from certain types of medication, but the medications only address some of the symptoms. Permanent brain damage cannot be fixed 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 my faith in God.
Source by Kerry B Johnson