Silver Lining: Working With Other Children On The Spectrum Helped Me Truly Accept My Son

Life is a constant state of flux; sometimes, change occurs over a long period of time. At other times, a single moment can alter the course of our destiny, forever changing the fabric of our lives.

My moment of change, the instant that altered my destiny and that of my family, came one crisp, sunny Thursday morning, 12 years ago when my son Vir, my sweet, shy little boy, received a diagnosis of autism spectrum condition. With that, my world was shattered and my life was changed forever.

I have a fuzzy memory of the months that followed; all I remember is that they were filled with uncertainty, fear, at times rage at God, at the Universe, at the doctors, at my life, and above all, by a dark grey cloud of deep sadness engulfing all that I thought and did. This impacted my own sense of self-worth, my relationships with my husband, my daughter Gayatri and everyone around me. I didn’t feel like going anywhere, meeting anyone, doing anything.

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At the same time, we had to work hard with Vir, teaching him the basic skills of communication and play, and modeling and prompting appropriate behaviour. The days were filled with school, therapy, practicing what was taught in school and therapy, occupational therapy exercises and specially devised diets that hugely restricted what Vir could eat. I even consulted faith healers and psychics, in the hope that they would be able to draw Vir out of his world and into ours; we were leaving no stone unturned to help our little boy.

The nights were especially long, spent in a tumble of sweaty sheets as I lay awake, tossing and turning, imagining a bleak future for my son. What would he do when he grew up? What would he become? Where would he go after I was gone? My mind was rushing into the future with no answers.

However, like it does on any rainy day, there were slivers of light that managed to escape through the dark clouds and shine forth on our lives - when Vir learned a new skill, when he and his twin sister Gayatri played together and the sound of their laughter tinkled throughout the house, when he snuggled up to me and let me read him a book. All these were reminders and indications that a life of a different kind of happiness was possible for us.

Along with this, during those wretched days and sleepless nights, a quiet strength was growing within me. This was the strength that enabled me to keep working with Vir, even when I was so exhausted that I would drop off to sleep in the ride to and from therapy. This was the strength that gave me the courage to speak with Vir's teachers of his condition, and it was this strength that led me to first write about the fact that Vir has autism on a parenting website, confronting my worst demons and baring my deepest secret to the world.

This strength made me realise my privilege: we had got an early diagnosis, we had the money to pay for therapy without compromising on our quality of life, we had access to the best therapists and doctor to help Vir. It was the desire to help other like Vir that led me to join Ummeed Child Development Center, an organisation working with children with developmental disabilities and their families. Starting out as a junior therapist, I worked with more than 400 families over 10 years, and rose to become Master Trainer and Lead Therapist. Every family I encountered and worked with, taught me invaluable lessons for life, and my resolve to help them grew. Working with other children on the spectrum not only helped them; it also helped me truly accept my son and love him for what he is – autism and all!

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Now it is this resilience within me that has given me the strength to take my story to the world, to share it with other parents and let them know that despite challenges, despite sadness, anger, grief and despair, they will be able to smile again and live with and love their child. I consult with parents and help them deal with their child’s diagnosis, work with them on practical and tried and tested strategies and help them develop a plan to teach and work with their child. By sharing my experiences, my hope is that other parents get some relief on their journey, to build resilience within themselves and acquire the joy and peace that we all deserve.

Gopika Kapoor is a writer, autism consultant and above all, a mom to teenage twins, one of who is on the autism spectrum. Starting out as a junior therapist, she rose to Lead Therapist and Master Trainer for ten years. She left Ummeed in 2020 to write ‘Beyond the Blue’ and now lives with her family in Mumbai. 

The views expressed are the author's own.