Hey everyone, my name is Paul Sawka. I am the Awareness Leader for CDSS. I have been thinking and writing a lot about feelings and changes lately. I really wanted to share these thoughts with the world, so I would like to invite you to read my new blog series about my own emotions and changes as I get older.
Changes: Exploring Emotions and Aging
- Part 1: Dealing with Grief
- Part 2: Sibling Relationships
- Part 3: Selling the Family Home (Coming Soon)
- Part 4: Independence and Self-Advocacy (Coming Soon)
- Part 5: Holiday Memories (Coming Soon)
I have had a lot of ups and downs with my little sister.
My life changed when I first met my new baby sister. We had a lot of fun playing together when we were younger. Playing in the sandbox or in our big treehouse, playing all kinds of games, and watching many of our favourite TV shows.
Everything that we did when we were little was so wonderful. The reason why we don’t do all the things we did together when we were kids anymore is truly because we have outgrown it and we are adults now.
In some ways, we have to move on with our own lives and do our own things. It is hard when things change as we grow up because I know things will never be the same again.
I did learn from my sister about how to stop being bullied at school. She helped by standing up for me and I am very proud of my loving sister for really helping me because I was so very scared that the bullying might get worse if my sister didn’t help me. If I did help my little sister with anything, it was with her homework. I helped her with math and science and that is what I did with her.
Some of my favourite memories with my little sister are our birthday parties. They were very fun when we were little and they were videotaped by our Dad and that is how I always remembered them.
What If We Never Grow Up?
My relationship with my little sister changed over time because when we got older we had to move out of our parents’ house and that is how things have to be now because we are full-grown adults and everything that we did as children back then was great but we have outgrown that.
I have found some changes in my relationship to be very challenging. One challenge is to really know how to let go of my childhood, like old childhood games.
How to let go of tickling my sister is really and very deeply hard to do in my own life and I really would like to be able to continue it with my little sister but I know in my gut that I can’t.
I do still spend time with my sister sometimes, but not as much as before because she is always so very busy.
We watch TV together. We love to read books, go for walks, and we love to see movies in the theatre. Sometimes we go swimming because we used to take lessons in the past. We go out to have drinks or dinner and we go for drives and hikes in the mountains with our family.
Learning to Let Go
There were some challenges that I have experienced in my relationship with my Sister and it was about letting go of our old childhood games and toys and video games and our videos. Most of it is gone from our parents house for their move, so that is so very hard to be doing right now. (More on that in my next blog post.)
Our strategy is to really talk about everything that we have been through. I think that really having a good, long talk is very good for me and for her and that is the way to have everything out in the open for us both.
The View from the Other Side
By Amy Sawka
My experience growing up with Paul was generally pretty great. He wasn’t the type of older brother to pull my hair or bully me, he was always gentle, kind, and caring to me and everyone he ever met. Hearing horror stories about my friends and the fights they would have with their older siblings made me feel really lucky to have Paul specifically as my big brother.
How did growing up together impact you?
I spent some of my early childhood translating Paul for others, which was sometimes a pain because I was trying to live my own life and didn’t want to just be known as “Paul’s sister”. But it was also something I felt pretty proud of because it was something only I could do. Because Paul has Down syndrome, I learned a lot about inclusion and communication at an early age. This helped me develop the skills I needed to become the youth drama instructor that I am today.
Paul has always been a very outgoing guy. He was excellent at introducing himself to others in the hopes of making friends, and he always wanted to introduce me too. “And this is my sister!”, he would say. For someone who was very shy, this skill of Paul’s helped me meet people and make friends.
What are some of the highlights and challenges you experienced?
I remember lots of fun times we had together on family camping trips. We would spend hours in campground pools, swimming and playing together.
We also had great times together on larger family vacations like going to Disneyland or to the Caribbean.
We were both very into Star Wars growing up and I remember us dressing up as Jedi and staging epic lightsaber battles for our parents.
Obviously, when we were younger we did not always get along. He’s my big brother and I’m his little sister! That’s a relationship that has its own challenges. Especially when sometimes the older brother needed different accommodations that the younger sister maybe didn’t think were all that fair at the time.
I was probably a typical, annoying little sister in a lot of ways. I think I might still be! I push him in ways that others in his life don’t necessarily, and this can cause friction for us.
As his sister, I feel it’s my responsibility to ask him questions and continue to push for a response in ways others might not. He doesn’t always like this, but that’s the sibling relationship for you. When you’re family, you love each other even when you sometimes don’t like each other.
What does your relationship look like now?
The biggest challenge in our relationship now has been dealing with adulthood and trying to figure out what an adult sibling relationship looks like.
It’s nice to remember what it was like to be ten and living under the same roof, having epic lightsaber battles, but now we’re in our thirties, living in different places, with our own jobs and social lives, and it has been tricky for us to figure out what being siblings looks like for us now.
We’re still working on it.
Recommended Resources for Siblings
- Siblings Canada, Canadian Centre for Caregiving Excellence
- Having a Brother or Sister with Down Syndrome: Perspectives from Siblings
- Fasten Your Seatbelt: A Crash Course on Down Syndrome for Brothers and Sisters, Brian Skotko
- We’ll Paint the Octopus Red,
- Adult Sibling Toolkit, National Down Syndrome Congress
- Growing Together: Sibling Relationships, Down Syndrome Resource Foundation
- The Sibling Survival Guide: Indispensable Information for Brothers and Sisters of Adults with Disabilities
Healthy Aging for People with Down Syndrome
Navigate the next stage of life with useful information, resources and community stories. This resource helps people with Down syndrome and the people who care for them learn about the aging process and how to prepare for the future. Download the booklet from our Healthy Aging Resources Page.