How I found and built disability community
Anchel Krishna (centre) with daughters Syona (left) and Nalina (right)
By Anchel Krishna
In 2011, just before my daughter Syona’s first birthday, we learned she had cerebral palsy. I remember sitting in front of my computer, Googling “special needs” and “special needs parenting” trying to make sense of our new reality.
Up until then, our days had been a blur of bottles, diapers, naps and appointments—physio, occupational therapy and specialist visits. The usual parenting magazines and blogs didn’t speak to our experience. While others were sharing tips on baby gear or sleep training, we were struggling with those same things and navigating early intervention and medical systems. When she got her diagnosis, our day-to-day life didn’t change, but it made me realize our parenting path was going to be different.
That Google search led me to BLOOM, Holland Bloorview’s blog for parents of kids with disabilities, and Louise Kinross. I spent hours reading post after post. I hadn’t realized how alone I felt until I saw parts of our life reflected back at me for the first time.
Before the diagnosis, life had felt like a sprint. We were constantly moving between appointments, squeezing in naps and feeds. But once we understood that Syona’s developmental delays were part of a permanent disability, we had to shift to a marathon mentality. That meant learning how to pace ourselves, protect our time and energy, and most importantly, find a community. And let me be clear: I am not a runner by any stretch of the imagination!
Through BLOOM, I found other blogs by parents raising kids with disabilities. I read everything I could, reached out to writers, followed links and became a researcher of this new life. I wasn’t just looking for information. I was looking for people.
I’m a first-generation Canadian. My parents came to this country in the 1970s, met here and built a life. The sense of community I grew up with came from family, neighbours, educators, and the friends they made along the way. But when it came to raising a disabled child, we didn’t know anyone in our circle who had gone through anything similar.
So, I started building what we didn’t have.
I began looking at Syona’s therapists as part of our team—we were working toward shared goals. I talked to other parents in waiting rooms. I asked therapists if they knew families interested in connecting. I joined Facebook groups. I even said yes when I was asked to write about our family’s story for a national parenting website.
This was all deeply outside my comfort zone. I’m an outgoing introvert and prefer to process things privately. But I knew that to find our people, I’d have to put myself out there and cast a wide net.
Eventually, I connected with another mom online. We lived in the same city and made plans to meet for coffee. It felt like a first date. I was awkward and nervous, but we hit it off. We had an instant shorthand and a shared language for what life looked like. We came from different backgrounds and life experiences, but swapped birth and diagnosis stories like we’d known each other for years. It was the first time I felt what it meant to build a community around our family’s unique needs.
This community didn’t just show up in the good moments—it sat with me during the hard ones. Ones that were so hard that it often made people look away. Our community was made up of people who’d seen their children through difficult medical situations, who showed up in moments of deep struggle and who helped troubleshoot problems that didn’t have easy solutions.
So much has changed since then. I no longer use the term “special needs,” blogs aren’t what they once were and many of the sites I relied on have disappeared. I also recognize the privilege that allowed me to focus on building a community: access to technology, time and support.
But the constant through all of this, even all of these years later? The importance of community.
As Syona entered her pre-teen years, friendships were hard to come by and she was lonely. I reached out to our community. That same friend (the one I met over coffee) suggested our kids get together. They’re now building a friendship of their own, just like we did.
Over time, my definition of community has continued to evolve. Some of our favourite people have come into our lives because of Syona’s needs—respite workers, inclusive camp counsellors and caregivers who’ve become her friends and part of our extended family. What may have started as support has transformed into relationships.
Seven years after Syona, our younger daughter Nalina was born. She’s helped expand our community too. Through her, we’ve met local families who embrace us exactly as we are, acknowledge our differences and find ways to include us all.
BLOOM has remained a constant through all of this. Whether it was a story that reflected our reality, a new perspective I hadn’t thought of, or research that helped me understand more about disability, BLOOM became part of my community too.
When I was asked to write for BLOOM, it felt like a full-circle moment. One where I could use the space that helped me find connection to hopefully offer that same connection to someone else.
These days, I’m starting to talk to Syona about how she can build her own community. We talk about friendships, how they come in all forms and what it means to find people who get you. Just like I did all those years ago.
Because sometimes, when what you need doesn’t exist, you build it. And that is the lesson I want my kids to learn.
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