Jesse Augustin

My little brother Jerry was born when I was four. I remember walking through the hospital with my dad and seeing him swaddled up in a blanket that reminded me of confetti. I realized babies were smaller, more fragile and a lot funnier than I anticipated (he made the most interesting sounds from day one!). Looking back on it, I can see myself embracing the “big‑brother‑in‑training” title: making diaper changes fun by trying to beat a personal record, insisting on steering the stroller, and day‑dreaming about the adventures we’d share once Jerry could tell me where he wanted to go.

Jerry’s words didn’t quite come the way we expected. By age 2, while other toddlers were babbling or starting to form sentences, Jerry remained largely nonspeaking. It was clear he wanted to connect—he just didn’t have access to the tools most of us take for granted. That frustration often showed up as outbursts, and it took years of testing and waiting before a specialist confirmed what we had started to suspect: Jerry is autistic and has intellectual disabilities that mean he will likely need support in his daily life.

There is no handbook on how to be a sibling to someone with a disability, especially when you realize early on that the world is not built with their needs in mind. Questions started swirling in my head when I was still a kid: Who’s going to take care of my sibling when my parents can’t? Am I ready for that person to be me? What does that look like for us?

When I became a father myself, the urgency of these questions intensified. My parents were getting older, and I needed to understand how to show up for Jerry—not just as a brother, but as someone who could advocate with him and for him. I went looking for resources and stumbled on CCCE’s Siblings Canada. The idea that a group could form around this unique experience was completely novel to me. I knew that there were other people with siblings with disabilities, but I never considered that a community could be formed around that experience.

Their Acceptance and Commitment Therapy (ACT) workshop was exactly what I was looking for. Everyone in that space got it— the expectations, fierce empathy and commitment that defines sibling caregiving. I completed the workshop, then returned to take their facilitation course so I could pay it forward. Some days, the weight of considering someone’s future who still cannot fully advocate for themselves feels immense. Yet the connections and learnings I’ve made through ACT have anchored me for that exact challenge.

Note: Are you interested in signing up for the ACT workshop? Email [email protected] to join the waitlist for our next session.