Changemakersaathi पिता: The Father’s day special feature
“Courage does not always come roaring. It’s the everyday quiet courage that counts.”
I started my career in the advertising industry after my MBA campus placement as any other ambitious, high energy, and extremely success-driven, self-oriented young man would be in his early twenties.
I was doing very well in the usual career track in the ad agency industry.
Life took a marked turn with the bundle of joy, Noel, arriving in my life. Noel was our first child. He was born close to Christmas Day, on December 15. In my dreams, I saw my son, foremost as a spreader of joy, as one who would embody the values of warm celebration, love, kindness, and togetherness. So, I named him Noel.
His mother, Dr.Bishnupriya Dutt, an University professor, and I admitted him into the finest Montessori school in Kolkata.
After about two months, the head of the school called me to observe Noel. An inexplicable fear gripped me. I watched Noel from a classroom window so that I was not visible to him. She said that he was “aloof” and “there was something odd about him—he was happy to be on his own. He showed no interest in the kids around him”. Noel stayed away from all the kids in class, even during the group activities. During his singing class, he sat at a distance from the rest but smiled and clapped along with them. He was never distraught.
He took part in everything but from a distance and never in a group activity that involved standing close to each other or holding hands while singing or playing games.
He would never harm any child if they came near him. He was simply uncomfortable and would step away. We interpreted (naively, in retrospect) that as a strong need for personal space.
We went to various doctors and child psychologists in Kolkata but could not get a proper answer or direction. Those days were filled with anxiety and a sense of groping in the dark.
Finally, we went to Mumbai to see a renowned neuro-pediatrician. Noel was three and a half. I remember waiting in a hall in the hospital with numerous others and Noel refusing to sit. He was all excited; he threw away his shoes, and started to run from one end of the hall to another, chuckling away, creating a soft, melodic percussion score with his barefoot paddling down the hall. While all the noise and the unexpected behaviour of our child in the waiting room embarrassed us, I was loath to stopping him. Actually, in the midst of a very tense situation, Noel’s sheer joy at that moment was an elixir for me.
The doctor explained that Noel showed some characteristics of classical autism with several Asperger Syndrome traits, as well. He was three and a half years old. Neither Pia nor I had heard these terms before. We were told that it was a neurobiological, developmental disorder, and a lifelong condition, which often resulted in a number of pervasive handicaps. Noel was a verbal child but would have to be taught how to express himself, as he would encounter difficulties with language learning and his speech was unlikely to be age appropriate. We were shattered. Our world turned upside down.
One image from Noel’s toddler days that has remained etched in my mind is the unusual self-play of lining up toy cars. A small, blue toy Honda at the head, touching its rear was a replica of a farm truck, and behind that, a beautiful white Mercedes, then a stylish black car that looked somewhat like a GM Optra, after that stood a red Ferrari, and then a water tanker, and so forth, a long line of about 30 tiny play cars. I used to be spellbound, not just by the flawless assembly that would curve artfully at several places, but by the incredible concentration that Noel displayed while giving shape to his fantasy. An otherwise hyper-active boy, he sat there quietly watching this line-up, absorbing every little detail of every single simulated vehicle for hours, unperturbed by the noise of people moving about him and the loud chatter in the living room or people calling out his name.
From the moment the child is diagnosed as neurodivergent barbs are often hurled by people around including the extended family members out of sheer ignorance, deep-set societal taboos, and fear.
Yes! fear of the special, mentally handicapped child, sets up a very non-helpful, sometimes even a hostile atmosphere for parents and the special child. The reasons for such negativities are incomprehensible. In many situations they are mired in superstitions.
The awareness of the issues and the life challenges of a congenitally neurodivergent person in general, is low, empathy pathetically low, in most societies.
We begin to consider the special child ‘ashubh’. Inauspicious. Endowed with ill-will. Stigmatized. We often feel comfortable hiding the child.
Dr. Yuval Noah Harari – the very popular author, historian, and thinker, cautions often “It is a great wisdom to accept reality as it is, even if it contradicts most stories that many people believe.”
This has always resonated deep within me as the father of a special child.
The stories that entrap us as we step into this journey of special parenting are unscientific, full of prejudice, and engender discrimination. And needless to add, such negativity demoralizes parents deeply and the rest of the family placing the special child in far greater difficulty.
There has been an exponential growth in subject knowledge of special needs and neurodiversity owing to advances in research across many domains, advances in medicinal therapies, learning devices, educational tools, limitless teaching aids and emergent technologies are now accessible because of the internet boom.
But expert advice, new knowledge of therapies and prescriptions are not the only things that parents need.
They need courage in every step.
They need emotional support in every step.
They need new energy to think differently.
They need direction.
So, parents need to hear from other parents facing similar challenges. They need empathy and understanding. They need to know that they are not alone. They need to know what other parents are going through. They need to learn copiously from other parents’ experiences, insights, fears, mistakes, struggles, and victories.
They need to know how to recalibrate their own ambitions and priorities in life.
They need to let go their urges of vicarious realization of their goals through their children.
They need to know that the neurodivergent child may not be able to form emotional and empathetic ties with friends as we do, and therefore, needs the parents and their siblings and other family members, their teachers, much more than the neurotypical child.
Above all, they need to stay sane and begin to love their new kind of life.
This is the reason that I chose to write my first book “I HAVE AUTISM and I like to play
good bad tennis.”
My book talks about my discovery of the sensory integration issues, the intimidating social dimension and communications (not the same thing as having language and verbal skills),
I go on to talk about training in a wide variety of sports and then in late teens the meticulous strategies to get Noel employment-ready.
My book is also an expression of ruminations, vignettes, and insights drawn from Noel’s life that would be of wider interest.
Some very amusing. Some, rather sad. But always providing new insights along the way.
I write for all the parents of kids with intellectual disabilities.
I write so that people in the larger society who are unaware can make room to become aware, understand and accept the condition of autism and ‘specialness’ as a life condition.
In retrospect I say that special parenting is not for the faint hearted. Not for the uncourageous.
I have resolved to devote myself to the cause, provide courage, new energy and support of the neurodivergent carers and autistic community at large through counselling and strategy development keeping the interests of the child at the centre in every step forward.
Author Debashis Paul
Author, Speaker, Management and marketing strategy consultant, and a father
Here’s the recording of an exclusive interview of Debashis Paul with Shilpi Mayank Awasthi, Founder of Specialsaathi.com
Artwork for this ChangemakerSaathi story is done by our extremely talented CreativeSaathi associate Morpheus Nag.