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 a general term used to describe a variety of syndromes and disorders that can occur in a child whose mother used 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 FASD are facial deformities, growth deficits, 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% untreatable. It is estimated that FASD affects 40,000 babies each year. This is more than spinal 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 his family.
The emotional cost to families cannot be underestimated. For biological parents, recognizing that their children’s mental retardation, birth defects, and / or neurodevelopmental disorders are the result of prenatal maternal alcohol use is very difficult to cope with. For adoptive or foster parents, discovering that their child suffers from Fetal Alcohol Spectrum Disorder after years of trying to understand his cognitive and behavioral problems results in feelings of frustration and isolation.
As an adoptive mother, I can tell you that raising a child with FASD is the most difficult but the most rewarding thing I have ever done in my life. Andrew is now 13 years old and in the seventh grade. He is sweet, generous, loving and very naive. He has also exhibited many of the symptoms associated with FASD from 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 for more than 30 minutes at a time, day or night. To say that life seemed impossible is actually an understatement. It needed constant attention and if I left it out of my sight in another room for a minute, it would destroy it. If she wasn’t by her side when she had a bowel movement in her diaper, she would take it off and smear feces on the walls, rugs, 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 throw everything that was in the refrigerator staining it on the carpet, walls and beds. For years we knew there were serious problems, but no one could help us. All professionals said that their behaviors were outside of their 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 all daycare centers in our area, went through at least 30 babysitters, and was unable to stay at Church’s daycare. He was very violent with everyone; however, most of his anger was vented at me. He bit me, hit me and threw things at me. He would poke holes in the wall, in windows, throw stones at us, as well as in cars, and he was basically never happy. When school started, a whole new nightmare began. On the fourth day of school I had thrown away toys, supplies, and destroyed the classroom that ran out of the classroom, causing the teacher to have to drop off other students to chase my 4-year-old son. They transferred him to a class for the emotionally disabled 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 severity of his behaviors. We had tried 21 different medications and tried at least 4 different types of therapy. We started doing research on the internet and we found some sites about FASD and found that there were several places in the US that specialized in FASD. Andrew and I packed our bags, left my husband and two other children at home, and went looking for a diagnosis. We went to Baltimore, MD and saw a FASD specialist who finally gave her an accurate diagnosis of fetal alcohol syndrome. While we finally had a diagnosis, no one seemed 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 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 behavior and immediately asked if we would be open to coming to Atlanta to live for a couple of months so that he could attend the clinic. It was his observation that his behavior was something that would never improve without extreme intervention. At this point we had no other choice; every day it was bigger, stronger and more destructive. After battling 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 her behavior problems by 96.6% since we started the program. The skills we learned are skills that we are still using to keep his behavior in check. While we still have bad days, we now have good days too. Now he can stay in school all day, with the help of a shadow, and he can play baseball and soccer with other children his age and is happy.
Andrew, like most children with Fetal Alcohol Spectrum Disorder (FASD), will never be what others feel is “normal” and that is fine with us because he is now a happy child. 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 faced with him and his problems. We are living a pretty normal life, whatever it is. We are not cured in the traditional sense, but we are working and progressing. Now he has 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 they are not a curable condition that can be fixed with therapy or medication. There are some children who benefit from certain types of medicine, but the medicine only treats 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 my faith in God.