What Life with Down Syndrome is Like: Q&A with Self-Advocate Paul Sawka
Hello, everyone. My name is Paul Sawka. I am the CDSS Awareness Leader.
Everyone really should learn about the Down syndrome world because it tells us who we are from within ourselves. I think the best way to learn is for people around me to ask me questions and take time to listen and understand and learn from me.
Who I Am
I will be turning 39 soon.
What would you like us to know about you?
I would like you to know everything about me — my childhood, my schooling, my hobbies and all the things that I have learned throughout my life.
What made you decide to answer peoples’ questions?
I want people to know who I am.
Where do you live?
I live in Calgary, Alberta, Canada.
Are you married?
No, I am not married.
Do you have any siblings?
Yes, I have one loving sister.
Living Independently with Down Syndrome
No, I have lived with different roommates since 2013. They sometimes help me with everyday tasks like dishes, garbage and cooking.
How do you keep your apartment so tidy?
I am organized. I have a schedule on my fridge that reminds me of the things that I need to do when cleaning. I clean on Fridays. Being organized helps me know where things truly are.
Do you like to cook? If so, what is your favorite thing to make?
I happen to know how to be a very good cook. I make my own breakfast and lunches all the time. I have many favourite dishes to make – macaroni, eggs, waffles. I also make a killer sandwich.
What is your biggest daily challenge?
My biggest challenge is doing my everyday routines (like cleaning, cooking, working) and keeping my schedule by myself. Sometimes my roommate and others help with these.
Who helped you find housing and roommates and who helps you manage your finances? Who will help to take care of you when your parents are no longer around?
My parents help me with all of that. When they cannot do it anymore, there will be someone else to help me with that. These people are friends of the family/my godparents.
My godparents will help me with my money, my condo and the medical side. My sister will also help. I will have my roommate, community and work support there to help me too.
Editorial Note: Paul and his parents worked with PLAN Calgary to establish a network of people who will support Paul when his parents are no longer able to. Each person will have different responsibilities in specific areas.
My Hobbies and Interests
I like to hangout with my friends. I love watching movies and TV, especially Hannah Montana or if there is something interesting on Disney+.
What sports do you like?
I do curling in the winter and baseball in the summer with Special Olympics. I also like to go to the YMCA to workout and am part of the Calgary Dolphins Swim Club.
What makes you smile?
Things that make me smile are: hanging out with family and friends, going bowling, going to the library, eating cookies, and going out for drinks.
My Favourite Things
Red.
Favourite movies?
Camp Rock 1 & 2 and Spiderman.
Favourite foods?
Burgers, pizza, tacos and ribs. I do not like fish.
Favourite animals?
I am a cat person. I also like horses, rabbits and turtles.
Favourite musicians?
Hannah Montana, Camp Rock, Eric Nagler, and Justin Bieber.
My Education Journey
I am able to read and I love reading a lot, especially Disney books, storybooks, and space adventure books. I learned through knowing my ABC’s and how to write. My parents helped me learn to read.
Did you graduate high school?
Yes I did graduate high school. I graduated from St. Francis High School in Calgary.
My favourite classes were Art, Shop, and Home Economics. I was a part of the Dolphins Swim Club, community and Special Olympics baseball, and curling.
When you were a student, what was your favourite part about going to school, and why?
Making friends was my favourite part of school. We could be together and hangout. It was hard after I left school to keep in contact with them. I wish I could reach out to some of my old friends from school again. I miss some of my teachers also.
Do you find it hard to learn new things?
I do, yes. I am currently finding some things hard about learning the ukulele and guitar.
Working with Down Syndrome: My Job Experience
I do work for the Canadian Down Syndrome Society and I also work at the local Café Friends.
I went to Columbia College. It was through their program that helped me get into the world of jobs.
At my job at Friends Cafe, I had to fill out a form to apply and meet with the manager. On the form I had to share what days and hours I can work. After I applied I was hired on the same day.
They trained me and I have my own peelers, apron and hat and uniform.
What I Want You to Know About Down Syndrome
There are many ways that you can help: taking the time to listen to me, advocating and supporting things like CDSS, being patient with me, being a good friend and giving me your respect.
Does it make you happy that you have Down syndrome?
I am happy with my life and since I was born, I have had to learn many great things about myself and learn many skills. These things help shape me – learning to swim, play baseball, take care of myself, how to cook in the kitchen, to do vacuuming, cleaning, and laundry.
Something I would like to change would be for my neighbours at the condo complex to be more accepting and willing to know more about Down syndrome. I find it frustrating that some people don’t listen to me or are not respectful.
How do you deal with prejudice?
It’s very hard to deal with it – I feel hurt, anger, and sometimes rage. When I’m not respected I walk away, I cut them off. I also ask why they are scared of me? Why do they see me differently?
How can we be better to people with Down syndrome?
It’s not only about being kind, it’s about showing and giving respect to people like me to give respect to adults. Not giving respect to anyone, not only people with Down syndrome like me, is not okay.
What mistakes do people make when talking to you?
Sometimes people are afraid to come and say hello. With anyone who is scared or afraid, they need to persevere or push through what they are afraid of. It’s okay to be scared because that’s how you push through and be who you want to be. When it comes to a stranger or an outsider, they need to know what to do and how to approach me. They need to know how to say ‘hi’ or ‘hey’ or ‘what’s up’. Don’t be mean and rude and respect the way that I speak. Do not judge me and do not judge Down syndrome.
More Questions About My Life
No I do not. Though I do sometimes get sick, my health is generally good. I have an excellent doctor that has a very good understanding of my health.
People with Down syndrome can vote. You have to vote for the right side of the government.
People who have Down syndrome seem almost always to be happy. Are there times when you are sad and feel alone or left out?
Though I keep busy with my work and activities, there are times when I feel very lonely. I also have friends at Ups and Downs, Dolphins and from my time at Prep, but not many other friends outside of that. That makes me feel sad. I wish that would change so that I could have more friends from outside the Down syndrome world.
How do you manage your strong emotions?
If I get unhappy or mad, what I do is I sometimes punch my pillow, or talk to someone about it. I also ask myself why am I mad or upset?
What are your dreams to achieve in life? How are you going to work towards them?
I would like to be a world famous rockstar – someone who is on Broadway or in Hollywood. To be someone who children will see and know who I really am and what I can do. I work towards this by doing my vocal and ukulele lessons.
Interested in Learning More?
Down Syndrome Answers
10 Canadians with Down syndrome give their answers to the most-asked questions on Google about Down syndrome in these short videos
Down Syndrome FAQs
Some facts and frequently asked questions about Down syndrome.
What is Down Syndrome?
Learn about the different types of Down syndrome and how it affects each individual in a unique way.
Self-Advocate Blog
Read more about Paul in his blog, where he writes about his life and interests, including topics like living with a supportive roommate, mental wellness, and building friendships.