Why I won’t stay quiet about my kid’s special needs

My husband Dilip and I are first-generation Canadians. Both his parents and mine immigrated here from India in the 1970s. We grew up trying to find a comfortable balance between the traditions our parents brought with them and those of their new home in Canada.

Like many cultures around the world, there's a stigma attached to persons with disabilities. Although times are changing (which is awesome!), kids with disabilities in India are often institutionalized and rarely seen in public. Dilip's family helps run a centre in India that provides people with disabilities an opportunity to access education. It's the only facility of its kind in the country. Our culture is notorious for not openly discussing life's challenges—job loss, miscarriage, divorce, broken engagements. They're considered “scandalous” topics. But I firmly believe that stigma only plays a role in your life if you let it, and talking about it openly, publicly, only helps to reduce that stigma in the South Asian community.

I’m lucky that I have opportunities to share my family's story. I've been writing for the MasalaMommas website for a few years now. I admire how it covers a wide range of parenting issues. Recently, I appeared on the first episode of its web series and spoke about social stigma and disabilities in the South Asian community. 

Our family's introduction to special-needs parenting started with a wedding. The day my now five-year-old daughter Syona was diagnosed with cerebral palsy (when she was 11 months old), we were supposed to attend the wedding reception of a close friend. Given the news we'd just received, I think most people would have understood if we'd chosen to stay home. But we didn’t, and our community had a lot to do with that decision. In that moment, we had a choice: to stay home and reflect on our feelings about Syona's diagnosis or figure out how to carry on with our lives. I knew if I didn’t get comfortable talking openly about Syona’s special needs right away, it would be harder for me to accept. I didn’t want her—or anyone we knew—to think there was anything to be ashamed of. So, I got in front of it. I was upfront and open about Syona’s diagnosis before her disability was actually visible. When people asked questions, I answered honestly. 

We told our family the same day we received the diagnosis. In fact, the wedding allowed us to reveal the day's events to Dilip's side of the family. Both sides of our family were—and continue to be—our biggest supporters. We didn't activate a "phone tree" to inform people about the results, but we did mention it in person when we saw them.

People often asked: “Will she get better? Will she ever walk?” My answer was always that it was a non-degenerative neurological disorder, meaning it wouldn’t get worse—but it also wouldn't get better. I explained how it affected Syona's muscles and made it difficult for her to walk (she uses both a wheelchair and a walker). How cerebral palsy manifests over her lifetime could change and we wouldn’t know if she'd be able to walk until she was much older. That wasn’t the answer people wanted to hear, but it was the only answer we had. And that answer often led to some really honest conversations that brought our families closer together. Some people were shocked, while others told us to stop being so negative (we weren't being negative—we were being honest and realistic about Syona's future). The majority of our family and friends rallied behind us.

We bring Syona out to as many community events as we can because it's part of her culture and identity. Sure, our little girl in her hot-pink wheelchair attracts some stares while out in public, but that's the only way Dilip and I can think of that will help reduce the stigma in our community. The people who are closest to us look out for accessible venues for events to try to ensure that Syona can be a part of that action. And that effort, that consideration, always makes my heart swell with pride for how a community can make a person feel included with even one small action.

Follow along as Anchel Krishna shares her experiences as mother to Syona, an extraordinary five-year-old with cerebral palsy. Read all of Anchel’s Special-needs parenting posts and follow her on Twitter @AnchelK.

Read more: The one-year anniversary of Syona's diagnosis> Seeing my daughter in a wheelchair makes me happy> 7 things I've learned from my daughter's diagnosis>