24 Mar The Little Sheep Who is Learning to Quack
I will forever remember the day that I received the call to pick up my son! It was a snow day for my students and I was alone in my classroom. Our social worker shared that his birth mother smoked and drank alcohol during pregnancy until she found out that she was pregnant. We do not know how long she drank or how much, but we knew alcohol was involved. I did not think a thing about it. It was not like he was going through withdrawal from drugs. It was just alcohol. That is legal and some doctors tell women it is ok to have a glass of wine even if they are pregnant. At the time I did not know that it would have been better for him to have been born addicted to drugs because those babies are able to recover better from what they were prenatally exposed to but babies exposed to alcohol are not so lucky. Alcohol is a killer of brain cells. Some of the first things that form are brains, central nervous systems and hearts. To an adult, losing a couple hundred brain cells to alcohol is not as big a deal as it is for a baby in the first weeks and months of life in utero. The loss of a couple of hundred brain cells to a fetus is life altering as we would later find out.
Our son was what we thought pretty normal as a baby and toddler. He seemed a little fussier and harder to soothe as an infant and very active as a toddler. I knew from research that adopted kids tend to have higher rates of ADHD and he was “all boy!” It wasn’t until he started Kindergarten that we started to see the major differences. We started with an ADHD diagnosis and medicine came right after that. We tried so many different kinds of medication and none were really effective. My husband and I talked with the pediatrician and told him about the prenatal exposure to alcohol. He referred us to the Fullerton Genetic Clinic in Asheville where we had him evaluated. We found out about Fetal Alcohol Spectrum Disorder and how our son was on that spectrum. He does not have the facial markers but he has other makers.
At that point we also got an Autism diagnosis. Honestly, I can not tell you if he is autistic or not. Some days he seems like it and other days he does not. That is the thing about FASD. It looks like so many things at one time but then it looks like something else entirely another day. Everything with FASD is a struggle we have found. Not many people know about it and what few people know about FASD, know very little. It is really hard being the expert in the room when you so desperately want the doctor to be the expert so you can get your child the help he needs and deserves and so that you can take a much needed break for a minute. After the diagnosis came the doctors and specialist. He had an OT, developmental pediatrician, regular pediatrician, autism doctor and a therapist. Instead of our calendar being full of little league games and practices, our calendar was filled with doctor and therapy appointments.
To make matters worse, we had to drive to every appointment at least an hour away. The specialist that could help my child was nowhere close to our home. We joined a class for kids with special needs that met twice a week. We drove an hour and a half one way to get to this class. The next school day was rough because our son was exhausted. It wasn’t until this year that my husband and I were made aware that FASD was permanent. It was brain damage. No one shares with you the grief that comes with being the parent of a kid with FASD. We are emotional wrecks a lot of the time. Things that many families take for granted are a cause of grief for us. Sleep overs, there are none. Ball games, there aren’t any. The hopes for a normal life are gone, replaced by the sadness that we have to prepare care for our son for that time when we are no longer around while most parents are preparing their children to live on their own.
We dearly love our son and would take this journey again if given the chance. I would do it differently, but that is what hindsight does for us. Not everything with FASD is bad. Our son has one of the biggest and most giving hearts of anyone I know. He would do anything to help those around him. He is very bright and approaches everything from a unique perspective. His sense of humor always has us laughing. Our sweet boy’s wish is that he could just be like everybody else. You see, our son loves sheep. He is our little lamb. He has his own flock of stuffed sheep in the top bunk of his bed. He has Bo, his stuffed sheep from his first Christmas that is his best friend that goes everywhere with him. Sheep are his life! He wants to raise sheep when he gets older. He struggles in school because he looks perfectly normal. His speech patterns are normal and he says things that he should not. He will repeat anything that he finds funny over and over again. He does not understand many of the phrases he repeats and gets in trouble for in school. A well meaning teacher told me that if it looks like a duck and quacks like a duck then it has to be a duck. To which I replied, well in this case this is a little sheep learning how to quack in a duck world. He will always be different. He will always have to struggle because his executive functioning skills are just not present. I have to be his external brain. He is capable of doing stuff, but it just will always look different. He will always be a sheep trying to live in a duck world. As long as I am around, this momma duck will continue to create safe spaces and teach other ducks about FASD so that my sweet sheep and other creatures can be successful in life.