Special needs

Special needs parenting: How I found inspiration in others

One inspired mom considers how her special-needs daughter will participate in cultural programs in the future.

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Anchel wants to incorporate more activities into Syona’s life. Photo: Anchel Krishna

In our family, the holidays start in September and end when we ring in the new year. We celebrate Hindu holidays throughout the fall, with Thanksgiving and a handful of family birthdays scattered in between. Our family also celebrates Christmas, so the fall and winter are filled with a variety of cultural traditions—Indian, Hindu and Canadian.

As a communications manager for Children’s Treatment Network, I share great articles with our followers via our Facebook page. Last week, one of our awesome volunteer parents shared the inspiring story of Hema Ramaswamy, a young woman with Down syndrome who completed her arangetram. An arangetram is a two-and-a-half hour recital of the classical Hindu dance of bharata natyam. Many Indian girls study classical dance and, on my husband Dilip’s South Indian side, it’s been a common rite of passage for many of our family and friends.

Bharata natyam is an exceptionally complex dance that depicts the stories of the vedas (Hindu scriptures). It’s physically demanding and involves intricate work with the fingers and facial expressions, as the placement and movement of everything—from one finger to a specific gaze with the eyes—can represent a particular part of the story. An arangatrem can only be completed after years of study. I certainly never had the discipline to practice it. My youngest sister attempted it, but she only lasted for a year.

When my four-year-old daughter Syona was diagnosed with cerebral palsy I often wondered how she would participate in many of the activities I grew up with—music lessons, dance, sports, etc. As we’ve become more seasoned special-needs parents, we’ve learned there are inclusive versions of many activities. This year, for example, she played in her first soccer league, which was incredible to watch.

We’ve taken Syona to religious events in the past and it’s easy to find ways to ensure she can participate in the traditional celebrations. But I hadn’t thought about how we would incorporate some of the actual cultural activities into her world. At this point, she hasn’t expressed much interest. But I’m sure that as she gets older and sees her cousin doing some of these things, she’ll be interested. Now, I need to figure out how to include Syona or adapt certain activities for her needs. I’ll also have to get creative with our schedule and find ways to fit them in.

As Syona’s mom, my goal is to ensure that she be able to make as many choices about the activities she’s involved in as any other child. The article about Hema reminded me that cultural activities are no different—and sometimes even I need that little encouragement. I certainly hope that Hema keeps dancing. I know that I’m going to be squirrelling the article away to show Syona how working towards our goals often takes longer than we expect, but often the journey is just as important as the end goal.

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