Opening the door to my identity: How an FASD diagnosis shaped my life during the COVID-19 pandemic
This piece is by Vinnie Naistus as told to Rachel Hetherington of the FASD Network of Saskatchewan. It has been edited with Vinnie’s input and approval for structure and clarity.
I was at home watching YouTube in March 2020 when I first learned that COVID-19 was getting serious. I saw a video saying the virus is spreading in China and spreading to other parts of the world. After that we were told to stay at home.
Like most people, my life has changed
I had to give up my volunteer work at the grocery store and my continuing education courses were cancelled. It could have been worse because the classes didn’t highlight my strengths. I didn’t enjoy 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 brain works differently than most of the people around me and sometimes they have trouble understanding me.
When that happens, I slow down, take a step back, and try again.
When I was stuck at home during the pandemic, I exercised, listened to music, made art, produced videos and took photos. I have a close circle of friends online. We spent a lot of time chatting, playing games and watching movies.
Sometimes I feel anxious when there are a lot of people around, so I’ve enjoyed that part of the lockdown because I’ve been able to focus on one thing at a time. I had my own little world and could choose what was in it.
Even though the pandemic has made my life easier, I know it has been difficult for many people.
It wasn’t always easy for me either. I was not allowed to visit my family in Ontario and in May 2021 my grandpa contracted COVID-19 and died. It made me sad to lose him because we were very close, but I know he will always be with me in spirit and make me strong.
Just before lockdown, my aunt had helped me connect to Saskatchewan’s FASD network. I had been searching the internet and thinking about FASD for a while so they arranged an assessment for me. I felt emotional afterwards because it confirmed what I had thought but not exactly known.
It was great to have someone on my team who understood FASD and could help me communicate my needs, but when COVID hit we were no longer able to meet in person. Many services and supports were no longer available and I had to put some of my goals on hold for a while.
Instead, I made video calls and attended online peer support meetings. It was good to tell my story and to 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 learn how to deal with different situations and practice new ways of doing things. I also applied for an Indigenous Status Card. I am registered with the Onion Lake Cree Nation but was adopted as a baby. Finally, I would like to know more about my story and my birth family. I’m starting to feel ready to see what’s behind that door.
Vinnie Naistus shares his experiences as a person with FASD during the pandemic.
I’m just a regular guy
I want to be a producer, photographer and pro gamer. I make YouTube videos and take photos with my Canon D90 that I saved to buy.
I want to inspire everyone to do what they love and seek help when they need it.
FASD is a disability not usually seen, but I hope people read this and take a closer look.
September 9th is International FASD Day dedicated to raising awareness of fetal alcohol spectrum disorders to improve prevention, diagnosis and support for people living with FASD. September is also officially recognized as FASD Awareness Month in Canada. For more information and resources, see Sask. FASD Network website or the Canadian FASD website.
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