Tales of motherhood are never the same. Every mother has a unique experience of carrying and raising her baby. It is hardly unusual to hear of stories that a woman with two pregnancies at different times can have distinct experiences. But when one of them is autistic and the mother is training children with autism, she becomes exceptional.
Come meet Real Mom Gopika, who has had two very different motherhood experiences in the same pregnancy! Her father was a successful plastic surgeon and her mother, a homemaker and fabulous baker! As the third child of her family, born a decade after her older siblings, our Mumbai chi mulgi has been the apple of their eyes. She married at twenty-eight years and had her twins, Vir and Gayatri, two years later.
In the course of a decade-long career at Ummeed Child Development Center, where she worked as a therapist and trainer, Gopika provided solace to over four hundred families through her therapy sessions. Today, she shares her journey from being a pampered daughter to the mother of twins, one of whom is autistic.
My friend and guide:
Papa was an avid traveler and trekker, thanks to him I have memories of beautiful and unforgettable adventures across India. When I turned 19, the news of his malignancy shattered our lives and before we could even come to terms with his cancer, he was gone. It took us all a long time to reconcile with his passing and move on. When I am stuck and unsure about what to do, I wonder, “What would Papa think or do about this?” and he gives me a sign, somehow.
One pregnancy with two motherhood experiences:
The news of my twin pregnancy was thrilling, I simply couldn’t wait to hold my twinnies. However, much to my annoyance I was advised strict bed rest with the foot end of it raised. I spent my first and third trimesters confined to the bed. My baby bump was massive, and it was only because of my hugely supportive family and my Vedanta studies that I made it through till the 36th week. The delivery went as planned. Luckily, my babies were born with normal body weight. My little twins – a boy and a girl. What more could I ask for!
In the hospital, they put Vir and Gayatri in separate cots. Those early days were nerve-wracking—one would cry and I would pick that baby up to feed, and as soon as I put the baby back in the cot and the other would start. There was one time where this carried on all night! When we returned home, I put them both in the same crib, and miraculously they slept peacefully. Later, I read that since twins spend nine months together in the womb, never separate them soon after birth, which explains the crying in the hospital and the peace at home. Like any other mother with twins, I had to deal with back-to-back breastfeeding, no sleep, and fatigue. Nothing or nobody warned me about the storm that was brewing.
Gayatri met her milestones on time, but Vir was slower. He was a reclusive child who enjoyed his own company, while his sister charmed people with her chirpy and outgoing nature. When everyone began to take notice and judged him for his nature, I, as a mother, sensed that something was not right. I decided to take him for an assessment.Real mom Gopika talks about the moment she realised her son needs to be assessed.
The moment that changed the blueprint of our family:
We took him to a developmental pediatrician, Dr.Vibha Krishnamurthy at Ummeed. She spent some time with him and with us, asking us several questions about Vir. After about an hour of examining him, she told us that Vir was autistic. This news shattered us and changed the blueprint of our family.
Looking back, Vir had shown signs of autism. He would play with his sister but spoke far less than her and sometimes he would say the most random things. Moreover, he would walk on his toes and avoided eye contact when he talked to us. He liked to play with the few toys that he had, in exactly the same way, repeatedly. If there were any changes in his routine, Vir would get very disturbed, and spend hours crying. All these signs added up to a diagnosis of autism.What followed was a very hard time in my life, and my memories of the entire experience is vivid even now.
I would cry every day. When I thought about what lay ahead, all I could see was a big, black hole. I felt as though there was no happiness, no light in the future.Gopika’s motherhood journey was tumultous.
I constantly questioned, ‘Why me? Why my son? Why my family?’ and got no answers. For a long time, I would dream about what life would have been like if he was neurotypical, how happy we would have been, what sort of a boy would he have turned out to be.
During this time, studying Vedanta helped tremendously. I learned that we are never placed in a situation that we cannot handle. We have to accept it, live in the present and learn from it – that is the only way we can attain peace of mind. These lessons have stayed with me, and have helped me live my life to the fullest.
My son’s guardian angels:
At that time, we felt it was best if he continued in his nursery school. He got into a regular school and continued there until the first grade. After that, we realized that our goals for him were not only academic but also for him to feel like he was part of the class and have friends, which he wasn’t getting at his school. So, we moved him to special schools.
Vir has always managed to attract some amazing people into his life – I call them his guardian angels.
His occupational therapist, Chaula, always ensured that he was getting the best therapy. And his special educator Neeta taught him how to read and write and made him part of her family. Vir’s shadow teacher Parul was so attached to him that she broke down when he left school. His music teacher Poornima would say that she could hear the Divine when he sang. All these ‘angels’ along with our supportive family and friends helped him grow and learn.
This was also a particularly exhausting time for me. Vir had to be taken from one therapy session to another. I had to teach him as well, while at the same time making sure that Gayatri was not feeling neglected. It was taxing on me as a mother. I was losing sleep and ignoring my fatigue in an attempt to push forward. I couldn’t afford a breakdown of any kind, I had to be there for Vir and Gayatri equally. Destiny has strange ways of designing your life. In my case, it was Gayatri’s maturity and understanding at a tender age. I call her my wise old owl because she always gives me some very sage advice, not the kind you would expect from a 15-year-old. Yes, it has been fifteen years since we had our two bundles of joy.
How Ummeed brought me close to children with autism:
As I said earlier, destiny played a major role in my life, this time by bringing me to Ummeed. I joined the Child Development Center as a junior therapist to helping my son, along with other children with autism. Little did I know that I would later support over four hundred families with therapy and would lead countless training sessions. My major milestone at Ummeed was coordinating the WHO Caregiver Skills Training (CST) Program’s pre-pilot and pilot sessions. What started as an attempt to empower my son and help other children with autism, became my passion.
Beyond the Blue – An indispensable guide for parents of children with autism:
On 2nd April 2020, World Autism Awareness Day, a colleague of mine at Ummeed, suggested that I write about my experience of raising Vir and training children with autism. The article was published in the Mumbai Mirror in May that same year. It signaled a turning point in my life. The response to the article was overwhelming I realized how important it was to chronicle my journey for the parents of children with autism. g. And thus, my book Beyond the Blue was born. It was not easy for me to write the book, despite having written four books in the past. I re-lived every moment, but the process of writing was cathartic.
While I accepted and talked about Vir and his autism, this made me love and appreciate him so much more.Gopika Kapoor never shied away from talking about Vir
Today, Vir is a hardworking teenager. He has inherited my mother’s baking talent, and has become a fantastic baker himself. Next year, he will appear for the tenth grade under the National Open Schooling board (NIOS). He confidently goes grocery shopping and visits his friends by himself. I have even taught him to walk to his friend’s house in the neighbourhood, which he does independently.
My tribe is my pride:
My husband Mohit is my true partner, who has stood by me through everything, picking me up when I have been down. Together, we take great pride in what confident young adults both our children have become. Gayatri is Vir’s best friend and my biggest support. She laughs, fights, plays, and jokes with him, but is his biggest protector – sometimes, both kids gang up against me and I love it! My in-laws dote on Vir – he is really the apple of their eyes! Needless to say, my mother, sister, and brother are actively involved in Vir’s life – they bake with him, read to him, and love being around him. My three nieces and nephew have special individual relationships with Vir and Gayatri, my aunts and uncles adore him, my brother-in-law and sisters-in-law love and spoil him to bits.
Being the mom of one neurotypical and one autistic child, I have seen how the world treats them differently. I have seen indifference, rudeness, judgment, and even suspicion in people towards Vir. All children with autism have faced these circumstances. As a mother, it is heart-breaking to face such a situation. I have been unsure of whether I need to be happy about people praising my daughter or sad because of the way in which they have looked down on my son. Torn by these thoughts, and precisely because of this I decided that Beyond the Blue has to get out there for people to realize that children with autism are like any other children, and deserves the right to a normal childhood.