Reansh with his parents, Shruti and Nikhil.
PANAJI
The upcoming World Down Syndrome Day, on March 21, prompts reflection on diversity. Advocating for inclusion and awareness, families of individuals with Down Syndrome strive for acceptance. Recent years have seen a positive shift in societal mindset towards disabilities, benefiting both affected families and the wider public. Yet, parents face challenges in accepting and advocating for their child’s inclusion. While progress has been made through education and government support, fostering dialogue among stakeholders is crucial. Despite challenges, gradual progress is evident thanks to dedicated individuals and organisations.
Shruti Sarup, a parent with a child having Down Syndrome, shares, “For the longest time, I hated the word ‘special needs’. At one end, we talk about every child being special; then we choose to call certain needs special? My son, Reansh, has an extra chromosome in every cell of his body. That makes his body composition different from the typical. But despite that extra, his needs remain the same as yours/mine or of any child. He wants to play and have fun. He wants to love and be loved. He wants to communicate and be heard. Where are any of these needs ‘special’?” asks Shruti.
Shruti mentions, “Friends, family, well-wishers, all with their best thoughts and intentions, think of us as strong/brave. An honest confession is that we are as vulnerable, as strong, as weak, as human as any of you out there...When you do things for your child, you are not brave or strong, you are a parent...well, so are we!”
It’s so true, when she points out, “The uncertainty of life stares at you in your face more often when you have a label tagged to you. No matter how much we may plan and think we will be able to govern our life our way, what the future holds is what the future knows. The only difference now in our life is that we tend to sway often in thoughts (sometimes fear) of “what after us”...Spending precious time of our lives evaluating how we can prepare everything for our child’s future isn’t the smartest way to be living in the present. We constantly try to work on our thoughts on those specific days. It is always work-in-progress, let’s be kind to each other because all of us have some or the other thoughts we are trying to tame.”
According to Shruti, “Learning never stops, and it is never too late to re-do a few lessons of your life in a different way. We try to share our journey with the world through our Instagram handle @Resilient_Reansh. From unlearning, all that we memorised through our life, to gaining the strength to live each day as it comes, to constantly seek and believe in the positives, to celebrate the smallest of goals, is a soul-nourishing journey. Not only does it show us the mirror of how limited our thoughts have been over the years, but in its truest sense, it is liberating to realise and appreciate all that we have and be grateful for ‘this and now’.”
Shruti’s husband, Nikhil, exclaims, “Our son, our sunshine! Most parents would look at big milestones of kids like crawling, walking, talking, etc. but for us parents even the smallest milestone is an achievement because we have 100 fears and when these fears are proven wrong by our kid’s resilience, it is a celebration! In a fast-paced and hectic daily schedule many people tend to be judgemental about kids with special needs and their parents. The World Down Syndrome Day is one such day where we hope to take one step forward on a long journey, to raise awareness amongst all.”
