Blog Archive

March, 2021

World Down Syndrome Day: CONNECTIONS


Reprinted from 3.21: Canada's Down Syndrome Magazine (Issue #6: Celebrating Our Connections). Click here to download the full magazine.

This year's theme for World Down Syndrome Day is "CONNECT." We all know it’s been really hard to connect with others during the pandemic, and we’ve had to get creative. Here is some important advice from myself and other young adults with Down syndrome about ways to connect with others, and ways to reconnect when we come out of the pandemic. (Intro by self-advocate Matt MacNeil)

Who are you looking forward to reconnecting with as we begin to come out of the pandemic?

My whole extended family and hugging everyone that I love! I have also missed going to book signing events – I love them because I meet new people and get to stay in hotels with pools! – Caroline

I look forward to reconnecting with people when I compete in sports again, and being with my family, going back to my work and also going on trips. – Matt

I am looking forward to seeing my brother and sister. They live in different provinces. – Janet

EVERYONE. My dance company peeps, my friends at my art studio, my friends in the U.S. who I didn't get to see last year. Also, the people I meet in coffee shops, and my support people. – Jessie

I am really looking forward to reconnecting with my athletic teammates and coaches, my local Down syndrome group, friends, old community supports and my CDSS co–workers. I really do miss them all so much and thinking about seeing them all again gives me strength to get through this pandemic and return to our normal lives. – Paul

My friends, my roommates and life coaches. Also, my work life, my social life and family members including my sisters. – Alana

I’m looking forward to getting back to work and seeing all my co–workers. I want to meet up with friends for dinner and a movie, bowling, or just hanging out. I can’t wait to see my cousins and family for get togethers. – Chris

Mostly my friends. I miss seeing them at hockey, or soccer or book club. I like people and I want to give everyone I know a hug when this is all over. – Andrew

I’d like to see a lot of my friends and coaches from Special Olympics and reconnect again. I’m looking forward to seeing people at the senior centre where I volunteer. – Jodi

I’m looking forward to starting up my sports and seeing my friends again at Special Olympics, and working more hours again so I can see my coworkers more often. – Danielle

I want to spend more time face–to–face with my best friend, instead of being in front of the computer screen using Facetime. – Julia

What would you say to someone with Down syndrome who may be hesitant to connect with others?

I think it is normal to be a little hesitant but do not let it stop you from connecting with others. Do not forget that you know yourself best, just remember to think positive things about yourself – and always keep cleaning your hands! – Matt

It is important to connect with other people. Get help to use a computer and connect using Facetime chat or Zoom, or just an old–fashioned phone call. – Janet

No one should be without friends or be hesitant to connect with others. – Paul

I understand we are in the middle of a pandemic and I understand you might be scared. It's okay if you feel uncomfortable. – Alana

Get a routine so that people get to know you and you can meet more people and feel more comfortable in your community. Go on outings on transit, shop local, visit local cafes and restaurants so that you become well known in your community. – Chris

The hardest thing for me is to initiate an activity and then to invite other people, but my family helps me with this. Look for something that interests you, either a sport or a social activity, and then find access for people with special needs.  Andrew

Keep up your friendships by using social media or phone so you don’t get lonely and feel left out or bored. – Danielle

My advice is to let them know that we all need a friend. Reaching out to others is a great thing to do because connecting with others helps us feel a part of something, so you don’t feel alone, or depressed. You can start by connecting with one person at a time. When you feel comfortable, then you can expand your circle. – Julia

Are there activities that keep you connected with others who have Down syndrome, or who have disabilities? 

I participate in virtual programming very regularly through Extend–A–Family. I also participate in other virtual programs in my community through Bridges to Belonging, Our Studio, Mighty Hawks through Wilfrid Laurier University and Light House Programs. I have learned so much and met many great people and have new friends. – Caroline

There are lots of activities on the computer, for example virtual dance parties and online workouts and also yoga, to name a few. – Matt

I have things like virtual social hour, virtual dances and challenges like scavenger hunts. Also, I am a representative for Down Syndrome International and we have monthly Zoom calls and work to do like preparing for webinars. – Janet

My Ups and Downs group and my role as Awareness Leader for CDSS keep me connected. I was doing an online joke night with Ups and Downs in the fall. Normally I would be swimming and doing my other sports. These things are still cancelled due to the pandemic but I hope to return to them as soon as I can. – Paul

Yes, there is my local Down syndrome group and Special Olympics, and my circle of friends. – Alana

I Facetime at 7pm with a couple of friends from DSRF. I also continued taking DSRF’s yoga and taekwondo classes on Zoom. – Chris

Sports and social activities are my main avenue of connection. I play basketball and floor hockey weekly with special needs teams. I have a group of friends within these sports and we go out for dinner together (pre–COVID) and to the pub. Like most of my age group, I also spend (according to my family) too much time messaging my friends. – Andrew

I connect by using Zoom, and texting on my phone. – Jodi

What activities keep you connected to your wider, local community, family, friends and others?

I like to draw, colour paint and read. I share my work when we do Zoom calls with family and friends and through my virtual program. I also love to cook and do so every week online with my friends. – Caroline

I stay connected with my community, family and friends by going for walks, running and cycling. – Matt

In PEI we are lucky that we are not in a lockdown, and I have my work two days a week. I can also go to the gym and yoga and church. I can visit my friends and family here. I also have some speaking engagements. – Janet

Every weekend my family and I get together. We bake, go on very long walks and have dinner together every Sunday night. I am very well connected with old roommates. We don’t see each other anymore but we stay in touch on the phone. – Paul

I normally stay connected through my work, indoor and outdoor soccer, and my busy social life. –Alana

I walk the neighborhood and chat with people I know. I also walk to the golf course once a week to see the people I worked with there and stay connected. – Chris

My jobs play a large part in this. I have worked for Lush, Wild Birds Unlimited, the Salvation Army and Nesters. It’s amazing how often I get recognised on the street or in a bus. I like to go out for meals with friends or my family and have gotten to know the staff at my favourite restaurants and other patrons. Most people are very friendly and we chat. – Andrew

I do Musical Theatre on Zoom, and also work with DSRF as an Ambassador. – Jodi

I go walking in the forest and neighborhood with my mom and see people in my community. I have been swimming two times a week with my mom at the rec centre. My mom and I also do Pilates on Zoom with a group. I recently started working again at the grocery store but only   day a week and I started working again at DSRF. – Danielle

Almost everything I do is inclusive – it includes people with and without disabilities. All my classes now are online. Propeller Dance, BEING studio, and an improv class with the Improvaneers out of the U.S. I even got to do classes with Zach Gottsagan from The Peanut Butter Falcon! I also do voice lessons with a friend who’s an opera singer. – Jessie

Share your favourite story about connecting and inclusivity.

Right as the pandemic hit, I was graduating from high school to begin my new life as an adult. The pandemic changed almost everything. Then Extend–A–Family Kingston reached out and asked me to read my books virtually to participants. Since that day, I am a regular participant of their online programs and connect with them daily for learning, teamwork, fitness, friendship and skills building. I feel motivated, connected and included. Bridges to Belonging is also working with me to help one day have a place of my own to call home! – Caroline

My favourite story about connecting and inclusivity happened right before the pandemic started. I went to Toronto to perform with Propeller. After the performances we partied! We went out and danced, the band couldn't believe how wild we were. I also rocked my solo in the dance piece Spasticus! It was a great comeback for me after my stroke. – Jessie

Our church was able to start up again but needed volunteers to make it work. So, I volunteered and am a greeter and hand sanitizer. – Janet

This is a love story of how I met my girlfriend. It started in 2019 at an ugly sweater Christmas party. I asked her for her phone number and I put it in my phone. We met again and we talked about our interests and we have been dating ever since. Our relationship is going very well. We will keep on dating until we get to the point of getting married but we don’t know when that day will be. Now, we stay very connected to each other by calling on Facetime and Zoom. – Paul

During the pandemic I started up a WhatsApp and Skype group chat. It’s a great way to stay connected to people that you can't see right now. – Chris

For me it’s being around the people I connect with, and also being included in different places and situations. It’s really important to feel connected, like when I volunteer at the senior centre: they help me, and I help them. – Jodi

I have two! As a Special Olympics Health Messenger, I worked to create a tutorial to help others learn how to stay connected using Zoom. The other story is about my acting career. I took an online acting course and I even did a few jobs for my acting. I did a background voice for a ParticipACTION commercial and I had a part in a Disney movie called SPIN, coming out this year. This was the first movie I have acted in. I was on the movie set for three days and it was so much fun being included with all the lead cast members. In the future, I hope to see more “differently–abled” people included in film, movies, print and TV. I am glad the movie casting director and my agent were able to SEE MY ABILITY. – Julia


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