On Tuesday I shared facts about Fetal Alcohol Spectrum Disorder (FASD) and that I am the parent of a child with fetal alcohol syndrome. Today I want to share the story of my son’s initial diagnosis and some of the best parenting advice I have ever received.
In 1998, my husband and I traveled to Russia to finalize the adoption of our son. This was not our first time as parents nor was it our first adoption. In 1986, I gave birth to my oldest daughter and in 1997 we completed the adoptions of our youngest daughter and oldest son. Are you with me so far?
In preparing for our adoption journey, I read everything I could get my hands on regarding adoption, met other adoptive families and adoption professionals. I was educationally prepared for both the rewards and risks of international adoption. I was not, however, prepared for the diagnosis of fetal alcohol syndrome, because I never thought it would happen to my child or my family.
When my son arrived home, he was 13 months old. He was small for his age and showed signs of developmental delay, both of which I knew to expect, otherwise, he appeared to be a perfectly healthy baby in need of the love, care and attention of a family. Just a few days after bringing him home, I made an appointment with our pediatrician for a physical and immunizations.
During the exam our pediatrician noted my son was low on the charts for height and weight and developmentally delayed. She felt confident he would “catch up” after being home and in our care for a while. As she continued the exam she mentioned my son’s fontanel (soft spot) appeared to be closed and his head circumference was small for his age. Since we had no idea at what age the soft spot had closed and due to the small head circumference my son was referred to a pediatric neurologist for further evaluation.
I returned home from the pediatrician’s office with no concerns about the referral. I knew my pediatrician was diligent and figured she just wanted confirmation that my son was fine. The next day I made the appointment with the pediatric neurologist and was told the first available appointment was a month and a half later. During the wait for the appointment, my life was busy, busy, and busy. I was a stay at home mom to an eleven year old, a four-year old, a 22 month old and a 13 month old. There was no time to sit and fret over what might be.
On the neurology appointment day, my son and I were taken into an exam room to wait for the doctor. After a short wait she came in, introduced herself and flipped through the papers in my son’s chart. She looked at my son and then turned to me and said “You know he looks different from other children, right?” I was taken aback by her bluntness. My first instinct was to grab my son, tell the doctor to F-off and storm out. Instead, I softly answered “Yes” because I knew she was right. During the month and a half wait for this appointment, I had noticed something was different though I hadn’t mentioned it to anyone.
After the neurologist completed her examination of my son and his medical records, she told me that even though she was referring him for chromosomal testing she suspected based on the physical findings and medical history my son had fetal alcohol syndrome. Her initial diagnosis would later be confirmed by a specialist in the field of FASD.
I was stunned by the FAS diagnosis and could do little more than hold my precious little boy close and cry. At that point, the neurologist whom I found so offensive earlier showed her true colors, which turned out to be lovely shades of kindness and compassion. She then gave me what has turned out to be the best parenting advice ever; early intervention and therapy were crucial and if I ever felt something was wrong concerning my son I should speak up and continue to speak up until someone listened.
I followed her advice and truly believe the early intervention services along with advocating on my son’s behalf have helped him to learn, grow, and flourish in ways he otherwise may not have. The advice to speak up until someone listens is great advice for any parent. If we don’t advocate for our kids who will?
My family and I are truly blessed with a child who loves life, loves others and loves us. What more could a mom ask for?
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