Lived Experience Of One Of Our Parents

When I first set out to adopt, I didn’t know too much about FASD. If I’m honest what I did know was rooted in a lot of things that today I know aren’t necessarily true. Back then so many of the struggles associated with FASD were seen as inevitable, whereas now while we know there are things we can’t change, we know far more about what good support looks like for both people with FASD and for their caregivers. We also know how important that support is. 

FASD means I think a lot about the situations my kids will navigate before they get there. I plan a lot for the future. I know despite thousands of reminders they may not remember to look both ways before they cross the street. I know they will struggle to remember things that need to be done before they leave the house, even though they are at an age where most people can do those things independently. I know that each year I will need to advocate at school, helping educators understand that just because my children remembered something yesterday, it doesn’t mean they will today. I know while their bodies have grown, and they have gained skills, there are still lots of vulnerabilities daily that bring risks. I need to help my kids navigate those risk because FASD impacts the part of the brain they need to make safe choices consistently. A Dr once told me it’s like helping them on the inside, from the outside. I believe that is true. 

I also know FASD means that when my kids thrive, they can achieve things people sometimes think they can’t. I know they can suddenly make gains in areas I hoped for years for progress. When they do, I know they deserve lots of encouragement and to know the pride you feel. I worry a lot that the message my kids get is that they are unsuccessful compared to most. It’s not true, their success is just different. 

Most of all I learned I need support. I need to hear from other parents and caregivers, people who understand the emotions, worry, hopes and good moments. I need those suggestions they have when I feel like I’ve run out of ideas. I need the reminder some of the hard things we navigate aren’t anyone’s fault. It’s why I’m so glad this project and community exists. It makes me know we aren’t invisible. There’s a space for us here with people who get it. Hoping anyone reading feels part of this community too. 

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