10 Nov Our Brave Warrior
Both of our children were adopted from Poland. Our daughter is 16 years old and was adopted at 15 months of age. Our son is 13 years old and was adopted at 22 months of age. Our daughter is neurotypical and is in the 10th grade. She is a great student, works as a counselor for the After School Child Care Program and loves cheer, drawing and writing. Our son is in the 6th grade and is happy, funny and loves to socialize with friends. He enjoys swimming, diving, and horseback riding. He was born with congenital cataracts, and although he had cataract removal surgery when he was three months old, he has low vision. In addition, he was diagnosed at age six with FASD after several years of seeking help and answers for his behavioral and cognitive delays.
I remember the first time I held our son. I said to my husband, “There is something wrong.” He said, “Yes, he is a boy.” But, a mother knows. I knew in my heart that there was something that the orphanage did not know or was not telling us about him. During the first few months at home, his doctors attributed many of his behaviors to his low vision. But, as time went on, he did not seem to be learning or adapting like other toddlers. When he was three, we enrolled him in a pre-school a few days a week. The teachers struggled to keep him present and engaged with the class. In fact, one day, they noticed that he was not in the classroom. After many minutes of panic, they found him in another classroom down the hall! For the first time in the school’s history, they had to install a gate at the door of his classroom. It was at that time that I took him to a Developmental Pediatrician who diagnosed him with “Global Developmental Disorder”. He was struggling with ADHD, delayed expressive and receptive language, sensory disorder and impulsivity. The doctor prescribed medication and recommended speech therapy. In addition, he was seeing a Child Psychologist who would talk to him about rules and expectations. I was reading every Parenting book I could get my hands on in hopes of finding a parenting strategy that would work. Nothing worked, nothing helped and the worry and frustration mounted. I would drop him off at Pre-School and cry to my sister for hours.
When our son was five years old, I enrolled him in the Pre-Kindergarten class at the private school our daughter was attending. Due to his behavior challenges, we were told that he could not attend the school. I was distraught that our son was not accepted by a school our daughter had attended for five years and was one that we considered an extension of our family.
Today, after living with our son’s FASD for almost 12 years, I believe that there are angels that watch over and guide him. Not being accepted into the private school was the first blessing for our family. The next year, he was enrolled in the Kindergarten class at a local Charter school. Due to his speech and academic delays, the Elementary Principal recommended that we get a Psychological Evaluation. We took him to a child neuro-psychologist who diagnosed him with FASD. I now know that a diagnosis at the age of six is highly unusual and was paramount to getting Andrew the proper treatments and therapies that help him cope with his disability.
Our son is now in the 6th grade. He receives EC instruction for Math and Reading and is in the regular classroom for Science, Social Studies, Foreign Language and Specials. He has many struggles throughout his daily life due to his extremely high impulsivity, lack of focus, poor executive functioning skills, slow processing speed and language delays. As he gets older, the situations and problems become greater. There are many times that he will say or do something that is socially inappropriate or even dangerous. Despite all the challenges he faces, he is surrounded by friends and teachers who love, accept, and support him. I believe that being with his neurotypical peers and seeing proper behavior modeled is how he learns important social skills. I fiercely advocate for him every day by educating teachers, therapists, coaches, and others on FASD, collaborating with his school on systems and methods for learning, and finding therapies and activities that will help him grow. This is a very difficult task because of the limited knowledge, programs and support for FASD in our school and medical systems.
FASD is an invisible disability. Our son looks like a normal thirteen year old. So, when he speaks or acts inappropriately, the reaction from others is often very hurtful. I have heard it all…”he’s just a boy”, “he just needs more discipline”, “he’s very smart and knows what he is doing”, “he just needs consequences”. These comments would not be said about a child who was diagnosed with Autism. This is because Autism is well-known and well-understood. I know that the insensitivity of others is because of the lack of awareness and understanding of FASD. My hope is that, through the efforts of the FASD Community, we will educate others about this disability that affects 1 in 20 children in the United States.
For our family, receiving a diagnosis and finding a Developmental Pediatrician who is an expert on FASD has been critical to helping us deal with FASD. As parents, we know our children better than anyone. Therefore, my advice to all parents is to find doctors, teachers, coaches and friends who will help and support you and your child….and don’t stop until you do.