Opening the door to my identity: How a diagnosis of FASD shaped my life during the COVID-19 pandemic News Jani
Opening the door to my identity: How a diagnosis of FASD shaped my life during the COVID-19 pandemic
This piece is by Vinnie Naistus, as reported to Rachel Hetherington at FASD Network of Saskatchewan. It has been edited with input and approval from Vinnie for structure and clarity. It was originally published on September 9, 2022.
I was watching YouTube at home in March 2020 when I first learned about the seriousness of COVID-19. I saw a video that said this virus is spreading around China and reaching other parts of the world. After that we were asked to stay at home.
Like most people, my life changed.
I had to stop volunteering at the grocery store and my continuing education classes were canceled. It could have been worse because the classes didn’t highlight my strengths. I wasn’t enjoying them, so I wasn’t sad to see them go.
School has never been easy for me because I have Fetal Alcohol Spectrum Disorder, or FASD. I have a good sense of humor, I’m intelligent and a good listener, but my mind works differently than most people around me and sometimes they have trouble understanding me.
When that happens, I slow down, take a step back, and try again.
While I was stuck at home during the pandemic, I exercised, listened to music, made art, made videos and took photos. I have a close group of online friends. We spent a lot of time chatting, playing games and watching movies together.
Sometimes I feel uncomfortable with a lot of people around, so I enjoyed this part of the lockdown because I could focus on one thing at a time. I had my own little world and I got to choose what was in it.
While the pandemic has made my life easier, I know it has been difficult for many.
It hasn’t always been easy for me either. I was not allowed to visit my family in Ontario, and in May 2021 my grandfather contracted COVID-19 and passed away. I am sad to lose him because we were so close, but I know he will always be with me in spirit and keep me strong.
Just before the lockdown, my aunt helped me connect with Saskatchewan’s FASD network. I had been searching the internet for a while and wondering about FASD, so they arranged an evaluation for me. I felt emotional afterwards because it confirmed what I had thought but didn’t know for sure.
It was great to have someone on my team who understood FASD and could help communicate my needs, but when COVID hit, we weren’t able to meet in person. Many services and supports were not available and I had to put some of my goals on hold for a while.
I made video calls and attended online peer support meetings instead. It was good to tell my story and listen to others, but I would have preferred to meet face to face. Since then, I have learned a lot about my disability and how it affects me.
I am learning how to handle different situations and practicing new ways of doing things. I also applied for Desi Status Card. I am registered with the Onion Lake Cree Nation, but I was adopted when I was a baby. Finally, I want to learn more about my history and my birth family. I’m starting to feel ready to see what’s behind that door.
I am just a normal person.
I want to be a producer, photographer, and pro gamer. I make YouTube videos and take photos with my Canon D90 that I saved up to buy.
I want to encourage everyone to do what they love and ask for help when needed.
FASD is a disability that you don’t usually see, but I hope people read this and take a closer look.
September 9 is International FASD Day, dedicated to raising awareness of Fetal Alcohol Spectrum Disorder, improving prevention, diagnosis and support for people with FASD. September is also officially recognized as FASD Awareness Month in Canada. For more information and resources, visit Sask FASD Network website either or Canadian FASD website.
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