Growing up with Down syndrome: Sask. siblings share their views

Picture this: two brothers locked in an intense Mario Kart showdown, a fierce rivalry unfolding as they race through digital tracks.

Or a sibling Nerf battle, the basement transformed into a battleground, as one sneaks around corners and the other dives for cover, both grinning from ear to ear.

Maybe it’s a quiet moment on the living room floor, playing with figurines and creating make-believe adventures.

Like most brothers, Kohl and Ben Bauml share a competitive streak. Ben won this round of Mario Kart, but Kohl insisted he let him win. (Brittany Caffet/650 CKOM)

These are the kind of moments that define the relationships between so many siblings.

650 CKOM sat down with these three siblings ahead of World Down Syndrome Day to dive into their experiences of growing up with brothers who have Down syndrome.

Listen to the set of siblings on Behind the Headlines:

Each of them brings a unique perspective on the bond they share, as Kohl Bauml reflects on his relationship with his brother Ben, Bailee Pike with her brother Aidan, and Charlotte Heisler with her brother Eli.

Their connections are built on the same foundation of laughter, playful competition and love as most typical sibling dynamics.

The only difference? Their brothers happen to have an extra chromosome.

Bailee Pike said her brother Aidan has taught her patience and resilience. “There’s always a way around a barrier. You just have to take the time to take a step back and look at it from a different angle,” she reflected. (Brittany Caffet/650 CKOM)

In this Q&A, they open up about the lessons in patience, resilience, and unconditional love they’ve learned from their sibling.

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650 CKOM’s Brittany Caffet: If you could describe your sibling in three words, what words would you use?

CHARLOTTE HEISLER (age seven), sister of Eli (age five): Silly, funny and his name — Eli.

BAILEE PIKE (age 16), sister of Aidan (age 13): Funny, sassy and loving.

KOHL BAUML (age 30), brother of Ben (age 26): Joyful. Unconditional love. Everything.

Charlotte Heisler said she hopes her brother Eli will grow up to have a good life, be healthy and have a good home and family. (Brittany Caffet/650 CKOM)

What makes your sibling unique or special?

HEISLER: That he has Down syndrome. And he likes sword fights!

PIKE: With his disability, the resilience that he has. He is able to bounce back from everything and continue to work through the barriers that have just been naturally given to him.

BAUML: His ability to bring people together and put people a smile on people’s faces. He is the center that brings all of our family, all of our friends together. What makes him so special and unique is just being able to really unite people in a way that you don’t see very often.

Kohl Bauml said his 26-year-old brother Ben is the centre of his family. (Brittany Caffet/650 CKOM)

Chances are you’ve had to tell someone what Down syndrome is. How do you describe it?

HEISLER: It’s something that you’re born with and you can’t catch it and it makes your learning seem a little different.

PIKE: Down syndrome is an intellectual disability. It happens when the 21st chromosome has three copies of itself instead of two. So you have an extra one. It makes things that are easy for someone who’s typical a lot harder and it takes a lot more effort to try and learn things.

BAUML: It is just a different way of life. The joy or the appreciation that Ben and a lot of his friends who also have Down syndrome have for the little things in life is something that really always stands out for me. It’s just having a different perspective on things and not worrying about the little things so much.

Bailee and Aidan Pike shared that their favourite activities are playing basketball and having epic Nerf battles in the basement. (Brittany Caffet/650 CKOM)

What is something about your sibling that people might not know if they don’t take the time to get to know him?

HEISLER: He uses signs to help him to talk because it’s hard for him to talk. Because he’s learning to talk very slowly.

PIKE: His jokes and his energy. He loves movies. He’ll pick up quotes from them and then he knows exactly the perfect times to use them in good context.

BAUML: How energetic, joyful and happy he is. You know, he’s typically a little bit shyer than when meeting people for the first time, and being nonverbal amplifies it a little bit. So you don’t see his true colours in the first meeting. But you know, the second, the third, fourth time… once he gets comfortable with you, he’s a he’s a totally different person.

Charlotte Heisler said her brother Eli is unique and special because he has Down syndrome — and because he loves sword fights! (Brittany Caffet/650 CKOM)

What makes you proud of your sibling?

HEISLER: He’s really good at wrestling. He’s just like, learning to grab a leg and a little bit of the wrestling moves. So cool.

PIKE: Basically, anytime I see him achieve something. He’s always had a big fear of water and this past year he started venturing out into it. He jumped off the boat this year!

BAUML: He works at Cosmo Industries three days a week. The fire hall is one of the major spots he goes to. Hearing stories about how hard he works there, how much fun he has there, and how he brings a different energy to the fire hall. I know I’m lucky enough that I get to see that on a daily basis. Having other people get to experience that is something that I’m really proud of.

Kohl Bauml said growing up with a brother who has Down syndrome has had a profound impact on his outlook on life. “It’s just having a different perspective on things, and not worrying about the little things so much,” he shared. (Brittany Caffet/650 CKOM)

What is the most important thing your sibling has taught you?

HEISLER: To always smile and be happy. And never give up.

PIKE: Definitely patience, and that there’s always something you can do. There’s always a way around a barrier. You just have to take the time to take a step back and look at it from a different angle.

BAUML: Unconditional love and appreciating the little things. It’s it’s amazing to watch. You know, he loves cheeseburgers. And if you were to watch him, it’s like it’s his first and his last bite on every single bite of a cheeseburger, right? So the ability to not sweat the small stuff and just appreciate the little things in life.

Seven-year-old Charlotte Heisler didn’t hesitate when asked to explain what Down syndrome is. “It’s something that you’re born with, and you can’t catch it, and it makes your learning seem a little different,” she said confidently. (Brittany Caffet/650 CKOM)

What is one thing about your sibling that you wish more people understood?

HEISLER: Some people are like, ‘How come he’s he’s acting that way?’ And then I tell and then I tell them that he has Down syndrome.

PIKE: His stims. It’s kind of just a way to self-regulate. It’s something that he does to bring his level of emotion down. I feel like a lot of people don’t really understand why he does that. So it’d be nice to just kind of have people, like, be more patient with that.

BAUML: His true capabilities. I think everybody always downplays what kids with special needs or intellectual disabilities are truly capable of. That’s something that you can’t see at face value. You’ve got to take the time to learn and get to know that person, to be able to see it. Each of them has a unique ability or unique gift that the world deserves to see.

Bailee Pike explained that her brother’s stims, like carrying a toy or flipping through books, help him self-regulate. She asks for patience, as he may not always be aware of his surroundings. (Brittany Caffet/650 CKOM)

What are your hopes for the future for your sibling?

HEISLER: That he would have a good life. Healthy, and have a good home and a good family.

PIKE: I would love to see him be able to live in his own house, do his own thing, maybe get a job, have a girlfriend. I’d love to see him get married or something. For him to be an uncle to my kids, if I have them.

BAUML: I think he’s found what his purpose is. It’s uniting people. There’s no doubt about that. My biggest hope for Ben is to be able to continue to do that with new people. And quite frankly, that just comes down to him being happy, right?

Editor’s note: The answers in this interview have been edited and condensed for clarity.