Yesterday’s FASD Awareness Day was invigorating for those of us who know someone affected by prenatal exposure to alcohol. It was a strange thrill to see the hashtag #FASDAwarenessDay trending on Twitter. We were not alone. People in diverse countries had a bridge to some of the world’s leading experts via social media where our questions were answered and we were pointed toward cutting edge information. Articles about FASD appeared in local media. Politicians were photographed with leading advocates. Regular people reached out to their friends and colleagues to talk about the issue. It was an inspiring day.
Now it’s the day after. Many, like us, woke up to the daily morning struggle. Our son finds it nearly impossible to sit still in the morning (meaning, he literally spent a half hour going upside down and regularly does flips on our couch and his bed). It is a struggle to get dressed. It’s challenging to get him to eat enough good food to get him through to snack time at school. He can’t keep track of homework or locker keys. His interactions with our dog need to be redirected before the dog loses patience. We shrug off the insults that come when our son gets frenzied.
You may say this sounds like a “normal” household, but all of these things are more extreme, more chaotic, and any one of them can quickly spiral into a full meltdown if we do not handle it correctly. When that happens, he loses his ability to control his frustration, things fly and get broken, he shouts, scratches, screams and flails out. We walk on eggshells before our morning coffee, while we wait for our son’s medication to kick in and for him to find his balance. And he is one of the “lucky” ones, he is not on the far end of the spectrum. Other kids have significantly greater difficulties and are unable to perform even some of these tasks.
Yes, it’s the morning after, and here we are. The epidemic continues. Women continue to be given mixed signals from the medical community about drinking during pregnancy. Kids go undiagnosed. Too few medical professionals screen for FASDs and those that do are woefully underfunded and understaffed. Once they give a diagnosis they know there is little follow on support. Parents struggle, some of whom also were affected when their birth mothers drank. Young adults with FASDs end up with criminal records or addictions because they never had the help they needed. They want to break the cycle, but need support.
It’s a cold morning, this day after. But it can change. Funding is a key to opening the resources needed. Decision-makers need to rally. They can draw upon significant research and best practices available from other countries. In the meantime, every parent with a child affected by an FASD should be pointed toward information on behaviour management techniques, medications (where appropriate), educational settings and resources.
No one should walk this path alone.