Like many others in the Toronto area, my parents are immigrants. They came to Canada in the 70s from India, their first date was at the CN Tower and after a few years of being married they started their family. My husband, Dilip (above with daughter Syona and I), is in the same boat.
Our marriage started with a pretty typical Indian wedding extravaganza (several days of celebrations filled with music, food, lots of colourful, traditional clothes and hundreds of our closest family and friends). And like many other newly-married couples we enjoyed a few years of dual-income, no-kids living before settling into suburban life and starting a family.
Almost two years ago our daughter, Syona, surprised us with a slightly early arrival . Shortly after she was born, we learned that there had been some unknown issues with the pregnancy that resulted in a specific type of brain damage that increased the risk of several conditions, including cerebral palsy, seizures and learning delays. As the year progressed and Syona continued to miss milestones, she was diagnosed with cerebral palsy .
The saying “it takes a village to raise a child” is definitely true in our case. Our house has a revolving door and the regular players include both our sets of parents, my sisters and their husbands, some cousins and Dilip’s brother and his family when they visit from Vancouver. Similar to many other cultures, this type of closeness is the norm for us. We have a built-in support system, Syona is surrounded by so much love and we have a half-dozen ready and willing babysitters on speed dial.
When Syona was diagnosed, there was one thing we knew for sure: we wanted to be as open as possible. As the Special Needs Parenting blogger for Today’s Parent I’m fortunate to have had that opportunity. And though I don’t delve into Syona’s MRI details with every person I meet, I don’t shy away from telling people about Syona’s diagnosis and how her abilities impact our lives.
There are a few strategies that might make talking about your child’s special needs easier • Get comfortable with the information you want to share. I used everyday situations to practise telling people about Syona’s condition, without sharing unnecessary details. My favourite place to practice? The casual conversations with other parents at our local park.
• Focus on your child’s abilities. I’ll usually start off by telling people about what Syona can’t physically do, but I spend the majority of a conversation sharing Syona’s likes, her progress and what she is able to do.
• Set and share your comfort zone. When Syona was diagnosed our family wanted to know if they could tell people. We encouraged them to share Syona’s diagnosis and also gave them some information about the condition so that they were informed and could answer some of the questions that came up.
• Model the behaviour. We tend to be annoyingly positive people most of the time (don’t get me wrong, we have bad days , but mostly, we’re a happy bunch). So many people have asked me how it is that we stay positive and the answer is simple: we truly enjoy our life. Syona is a funny, spirited and happy little girl (most of the time). There are a lot of small joys that we experience every day. We take time to laugh. So far, I don’t get a lot of pity or sympathy (and that makes me happy). I’d like to think it's because people see that we are happy with our life.
• Be respectful. Like I said before, Syona’s “village” is made up of lots of individuals that all have their own ways for accepting this unexpected turn of events. Some of them turn to religion and prayer for comfort, others look to us for guidance and many just accept things after seeing how happy Syona is. Let people get comfortable in their own way.
• Use community resources. Your child’s case manager or therapists might be able to provide insight. You may even have a community group or leader that advocates for special needs in your community.
• When people ask us questions, we treat them as opportunities to raise awareness and educate. I’ve found that questions usually are inspired by lack of knowledge (yes, even the offensive ones). Instead of getting offended, steer the question back to what is appropriate. And if you’re not comfortable answering a question or don’t know, just be honest.
Like any culture, there are varying levels of acceptance about special needs in the South Asian culture. Our family is a little more immersed in special needs advocacy than most. My husband’s aunt and uncle both have muscular dystrophy and run a school in India that integrates special needs kids with typically developing children. My mother-in-law is the founder of Handi-Care International , a charity to help raise funds for the school in India.
But not all our interactions have been sunshine and roses (both inside and outside our cultural community). There are people who look for those miraculous “cures” to what is “wrong” with my child and those who act as though our life is a tragedy or a curse.
Because of Syona’s diagnosis I’ve met several amazing friends (those who have kids with special needs and even many of her therapists). The truth is, I’d love to meet some South Asian parents that have children with special needs and start building a community network (Imagine a Bollywood dance class for kids of all abilities. How cute would that be?).
Since Syona’s diagnosis, both Dilip and I have become more optimistic than ever before. And many days, I look around and think that our life is perfect in its own imperfect way.
How has your cultural community reacted to your child’s special needs? Please share the ups and downs here in the comments! We'd like to include a piece on culture and disability in the next BLOOM magazine and would like to hear a variety of perspectives. How is disability viewed in your culture?
Anchel Krishna is a freelance journalist with experience in strategic communications who cares for her toddler while attempting to string together coherent sentences. She is also the special needs parenting blogger for Today’s Parent Magazine. You can connect with her on Twitter or email her at firstname.lastname@example.org .