One of the keys to helping someone with FASD is to meet them “where they are” not where society thinks they should be.
I’ve had discussions with countless people who offer well-meaning but ill-informed advice, such as, “When I was 18, I was in college, had a job, was living on my own, or in the army, etc.”
I wish people understood and accepted people the way they are. Just because you were doing something at 18 doesn’t mean that every other person on this earth can do the same things when they are 18.
Fetal Alcohol Spectrum Disorder is such a complex whole body disorder, and while I don’t expect people to understand every aspect – because people are so different – there are some key characteristics that if understood would lead to more empathy, compassion and acceptance.
One way to begin understanding is to understand dysmaturity: Diane Malbin describes it as the gap between chronological and developmental age in different domains due to the effects of prenatal alcohol exposure. Although I’ve not heard the term “uneven maturation” it is also sometimes used as a descriptor.
In the original 12 Wishes for my Daughter and FASD, #3 highlighted when the maiden met the Prime Minister of Canada:
and was able to pass on a note to him about FASD. You can read about this exciting day here: A Letter for the Prime Minister of Canada. I was proud of her for using her voice, but we need so many more voices. In 2018 and 2019 she used her voice when she presented at two Caregiver Support Groups, an FASD Conference and participated in a panel of adults with FASD at a workshop: Growing Up With FASD.
Awareness and recognition is inching along – which help with recognition and acceptance – we are not even close to where we need to be to make a significant impact in the lives of individuals with FASD and the people that support them. The Red Shoes Rock campaign continues to spread awareness each year leading up to FASDay. More advocates are out there talking about FASD. Some countries and different areas within countries have great awareness. But we still haven’t hit the critical mass that is required.
Sadly, in 2020 this is still a wish, as there hasn’t been any significant progress.
My wish is still for acceptance of individuals and understanding of FASD.