September is Fetal Alcohol Spectrum Disorder Awareness Month.
I have spent the last 3 years of my life raising 2 children affected by fatal alcohol. One was diagnosed as Fetal Alcohol Syndrome (FAS), one of the most drastic and severe syndromes within the Fetal Alcohol Spectrum Disorder (FASD). While they are no longer in my care, the love we felt, the struggles we faced, the victories, and the frustrations are all forever a part of me.
Did you know that it is estimated that as many as 1 in 20 US children have fetal alcohol exposure (Pennsylvania Department of Drug and Alcohol). We’re talking long lasting permanent deficits. 1 in 20 children….and it’s completely preventable! It’s infuriating! I could tell you stories that would make YOU want to pull your own hair out. JAMA, has declared FASD to now be as prevelant as Autism. It’s staggering, it’s heartbreaking, and did I mention that it’s preventable?!?
Just for a bit of understanding, the signs and characteristics of FASD include: ADHD, difficulty with memory, poor social skills, low IQ, hearing and vision problems, low birth weigh, small stature through adulthood, sensory issues, impulse control issues, and difficulty in school… to name a few. Yup, we’ve felt and witnessed all of these!
There are daily things that people don’t think about or realize with FASD, because things can seem so…normal. But these kids struggle to keep up in school and in regular conversations, not to mention social situations. There are daily confusions and lack of understanding, daily feeling like they don’t fit in, and daily impulse control issues. We are talking about a 60% teen and adult incarceration rate for these individuals and a suicide rate for FASD individuals that is 19% higher than the national average. Yes, I forgot to mention the decreased lifespan, 35years of age on average. Yet, most people are clueless about FASD. Most schools are highly uneducated about it as well.
Life is hard for these kids. Life is hard for their caregivers. The statistics are stacked against them. A preventable dissorder. That part was the hardest for me as a caregiver, that it could have all been prevented created a rage in me that could not be quenched. Praise God that there is also hope. There is therapy and there are supports, and the younger it starts, the better the outcomes.
Awareness changes everything. Awareness spreads prevention. Awareness spreads intervention. So we wear red shoes in September, and when people ask us why we’ve been wearing red shoes, we tell them. Because awareness saves lives!