Opening the door to my identity: How an FASD diagnosis shaped my life during the COVID-19 pandemic

Thispiece is by Vinnie Naistus, as told to Rachel Hetherington at FASD Network of Saskatchewan. It has been edited for structure and clarity with Vinnie's input and approval. It wasoriginally published on Sept. 9, 2022.

I was at home watching YouTubein March 2020 when I first learned about COVID-19 getting serious. I saw a video that said the virus was spreading around China and getting to other parts of the world. After that, we were told to stay home.

Like most people, my life changed

I had to stop volunteering at the grocery store and my continuing education classes were cancelled. It could have been worse because the classes didn't highlight my strengths. I was not 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 humour, I am intelligent and a good listener, but my brain works differently than most people around me and sometimes they have trouble understanding me.

When this happens, I slow down, take a step back, and try again.

When I was stuck at home during the pandemic, I worked out, listened to music, made art, produced videosand took photographs. I have a close group of friends online. We spent lots of time chatting, playing gamesand watching movies together.

Sometimes I feel anxious with lots of people around, so I enjoyed that part of lockdown because I could focus on one thing at a time. I had my own small world and I got to choose what was in it.

Even though the pandemic made my life simpler, I know that it has been difficult for a lot of people.

It hasn't always been easy for me either. I was not allowed to visit my family in Ontario, and in May 2021 my Grandpa got COVID-19 and passed away. It made me sad to lose him because we were very close, but I know he will always be with me in spirit and keep me strong.

Just before lockdown, my Aunt had helped me connect with the FASD Network of Saskatchewan. I had been searching on the internet and thinking about FASD for a while, so they arranged an assessment for me. I felt emotional after because it confirmed what I had thought but hadn't known 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 were no longer able to meet in person. A lot of services and supports became unavailable and I had to put some of my goals on hold for a while.

I did video calls and attended peer-support meetings online instead. It was good to tell my story and listen to others, but I would rather have met face to face. Since that time, I have learned a lot about my disability and how it affects me.

I am learning how to manage different situations and practising new ways to do things. I also applied for an Indigenous Status card. I am registered with Onion Lake Cree Nation, but I was adopted when I was a baby. Eventually, I want to learn more about my history and my birth family. I am starting to feel ready to see what's behind that door.

WATCH|VinnieNaistus talks about how he's experienced the ups and downs during the pandemic:

Life with FASD during the pandemic

2 years ago

Duration 2:33

Vinnie Naistus talks about his experience during the pandemic as a person with FASD.

I am just a regular guy

I want to be a producer, photographer, and pro gamer. I make YouTube videos and take photographs with my Canon D90that I saved up to buy.

I want to inspire everyone to do what they love and to seek out help when they need it.

FASD is a disability that you can't usually see, but I hope that people will read this and take a closer look.

Sept. 9is International FASD Day, which is devoted to raising awareness about fetal alcohol spectrum disorder, to improve prevention, diagnosis andsupport for people with FASD. September is also officially recognized in Canada as FASD Awareness Month. For more information and resources, visit theSask. FASD Network WebsiteortheCanadian FASD Website.

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