Self-Advocates Talk About COVID-19

Everyone in the world has been impacted by the COVID-19 virus. The Canadian Down Syndrome Society asked members of the community share to share how they are feeling about the current situation, how the COVID-19 restrictions have changed their daily lives, and advice on how to stay mentally and physically strong during the epidemic. Here are some of their answers:

Question: How did you first learn about the virus and how are you hearing about what is happening in Canada daily?


I go to worldometers (https://www.worldometers.info/coronavirus/) to see where in the world it is and how many people have it. – Natalie

I visit the local radio station website on Facebook to get the latest news update in the newspaper on the coronavirus. I also watch the news for the updates in my area and for Canada. I listen to our cities mayor updates and I listen to our local Public Health Unit updates. – Julia

I don’t go to websites or listen to the news. It is too upsetting. I talk to my parents and my dance troupe about updates. – Jessie

I usually get more information by going onto Google. – Alana

Natalie staying healthy and doing yoga at home


Question: What are some things you are doing to keep yourself and others safe?


I’ve moved back home and only see my mom and dad. Neighbours from the porch and friends and colleagues and mentors on messenger and Zoom. – Jessie

I’m washing my hands a lot. I am not hanging out with my friends, not even my boyfriend and that is very hard. I’m staying at home and I’m social distancing. I’m spending time with my parents, my family and my boyfriend. I use FaceTime to see my brother and my boyfriend. I keep myself safe by staying at home and avoiding any crowds. When I go for walks, I make sure to keep our distance if we talk with people on the street. – Julia

I live in the country to live with my parents, so we don’t see other people. – Natalie

To keep safe I practice physical distancing, wash and Purrel my hands, I shower, wash all our groceries, I don’t see other people except who I live with. I washing my hands, spraying down door handles with Lysol and wipe down areas where I touch with the Lysol wipes.  I use hand sanitizers when I do go out, and follow to stay at home as possible. The way to keep myself safe going to place to place is that I bring things with me like hand sanitizers with me all time. When I do get back home I make sure I wash my hands and wiping down my wallet and keys and phone. – Matt

Matt cleaning his keys

Question: Do you find it hard to follow the rules about distancing?


Most of the time it is hard but it is different to be having to do a distancing because mostly you talk to people to face to face and now I have to find a way to talk like FaceTime or text or call to family and friends. – Matt

I find very hard because that’s how I show affection and because I am very affectionate person. – Alana

Not too hard to follow rules, except not touching your face. That’s hard! – Jessie

I find it easy to follow the rules about social distancing. I know how important it is. I do miss seeing my brother and my boyfriend in person. – Julia

Julia sorting her writing


Question: Are you worried about anything? If so, what are you worried about and how are you going to solve that worry?


When I first heard about the Coronavirus I was worried about how this was going to affect me, but I learned how to stay safe and protect others by following the rules. I was also worried about not seeing my family, my boyfriend and my friends. I solved that problem by using FaceTime and texting. – Julia

I am worried about how long this will go on. – Jessie

There is always things to worry about and wondering if everyone you know that they are safe and what activity got canceled case of the virus. – Matt

Matt keeping things clean and disinfected


Question: What has been canceled because of Coronavirus that you enjoy?


My job, workouts at the Y, my karate training, all of my competitions this year, choir practices, church. Everything! – Natalie

I had a very busy life before the virus. Two weeks ago I stopped working because it was unsafe for my health, but I will be rehired when it is safe for me. Before the virus, I skated five days a week and now we can’t skate. I am not able to help with my skating clubs CanSkate program for young skaters and I am not able to coach with our Special Olympics Fundamentals Program. I miss my skating friends and all the kids I help coach. My figure skating banquet and Special Olympics Annual Sports Awards banquets have been cancelled. The monthly dinner/ dances that I attend have been cancelled to keep everyone safe. I can’t go to the mall, or the movies with my friends. – Julia

EVERYTHING has been cancelled! Where I was living, rehearsals, my gym, dance and fitness classes, date night, going out for tea, visiting friends, the art studio. But now people are trying to figure out how to do stuff online. Today I am doing my Broadway Workout class with Zoom and later we have a company (Propeller) meeting on Zoom. – Jessie

Special Olympics, sports and hockey on tv. – Matt

The Italian dinner for World Down Syndrome Day got POSTPONED – Alana

Alana doing some delicious cooking

Question: Your schedule has changed a lot because of the virus. What has changed the most? How are you dealing with that change? Are there some things that have not changed in your schedule and routine?


I am not working anymore, so I get to sleep in a little more. I have so much more time because I don’t skate five days a week. For me what changed the most is that I love to show my family and my boyfriend how much I love them by giving hugs. I’m dealing with this change by showing them I still love them in different and creative ways. – Julia

For me the things that have not been changed in my schedule and routine is working on my Independent skills in my home, staying active and staying connected. I am cooking more with my family and helping more with family chores. – Julia

I have a new schedule in place of my old life. Now, I exercise in the morning, I write stories in the afternoons, or watch a movie, or shows. I help with supper sometimes. After supper every night I do yin yoga. Then I go to bed and listen to audiobooks before I go to sleep. I used to exercise before, now I exercise here. That has not changed. I used to do more cooking at home with my support worker. Now I enjoy baking with my mom, bread and stuff. I love my new life. – Natalie

What has changed the most is EVERYTHING! But dance & performing & rehearsals the most. Plus all my support workers are cancelled. Doing pretty well. We have things we do everyday: shower, go for a walk, go on the internet, read, a family game (we take turns choosing the game), be social (call/video chat) with three people every day, record Pandemic Picks!!!! The video me and my Dad post every day. We have lots of people watching and following! And we do a short mindfulness thing together. Oh and highs and lows at the end of the day! – Jessie

This change did not change all lot but it opened my schedule more and I found new activities that keep me busy at home and staying active. What am i keep the same in my routine is my morning coffee. – Matt

Jessie posts her “Pandemic Picks” to Facebook every day!


How are you staying active?


I go on the treadmill. When it gets warmer out, I will do more walking outside. I’m keeping up with my karate training, and piano practising. – Natalie

I do my dancing for my exercise. – Alana

I’m staying active using the Special Olympic Wellness Challenge everyday and using the Special Olympics Fit 5 Program and exercise cards. I have been dancing on my Nintendo Switch and going for walks to stay active. – Julia

Active walking, dancing with my headphones on and trying online classes. – Jessie

If I need some air I go outside. I go for a bike ride and doing a run around the block and sometime I do some new activities like yoga and workout that is on visual online. – Matt

Jessie and her dad are walking- even in the rain! Inside, Julia is staying fit and having fun with some dancing

Are there any projects you will work on while you are at home more?


The biggest project I’m working on at home is to work on my yearly project for the Special Olympics Ontario Leadership group that I am a member of. I will be creating a monthly calendar of events for our local Special Olympics. I am also working on creating a slideshow presentation on Healthy Lifestyles. The slideshow is based on my Healthy Lifestyle presentation I gave last fall in Prince Edward Island for the Prince Edward Island Special Olympics Health Forum. I will also be including my experiences from the Health Forum. – Julia

The center for the arts has been sending out art challenges I do them then I send them back to them. – Alana

I am doing some projects. I am recording more phrases with Project Understood (www.ProjectUnderstood.ca). – Matt

I will work on my new dance piece—Puff of Smoke. I got an Ontario Arts Council grant for that!!!! And figuring out how to work my dance mentor over Zoom. – Jessie


We hope you have enjoyed reading about what we are doing and how we are feeling about all these recent changes. Stay healthy and keep smiling, everyone!