When Vivaan was born, one of my close friends sent me Kahlil Gibran’s famous poem On Children. The first verse in the poem is often quoted, but I would still like to share it here.
Your children are not your children.
They are the sons and daughters of Life’s longing for itself.
They come through you but not from you,
And though they are with you yet they belong not to you.
My journey as a parent of a differently abled son has been one of extreme emotions – from disappointment to hope, from pain to joy, from love to anguish – it’s been a journey like never before (and will continue till the very end). As with the arrival of a child anywhere, ours was a source of immense joy. He was the first grandchild and first boy on my wife’s side of the family. The first year was spent worrying about every small thing and at times taking a perfectly healthy baby to a surprised doctor! In those times of unfounded worry that plague every new parent, the presence of my in-laws and parents was the biggest source of comfort. Experience, I realized was priceless!
I enjoyed the attention of onlookers who stopped to admire my son’s chubby cheeks, much to the discomfort of my wife! Things changed around the time he completed 15 months, when there seemed to be early signs of different behavior. Any of the early symptoms could be easily ignored as growing up pains – lack of social interaction, not responding to name, interest in spinning objects etc. However, a chance meeting with a friend (who had a son on the Autism spectrum) forced us to go to a specialist – just to rule out any abnormalities.
After multiple visits to various doctors and scores of questionnaires, Vivaan was diagnosed with Autism Spectrum disorder – at that moment we were not aware of what hit us.
The magnitude of the pain was dissolved by the false hope that the diagnosis could be wrong. Vivaan looked fine, like any other child of his age. But somewhere deep inside, we also knew that the diagnosis could be right and just hoped that he would turn out to be highly functional. Since that day onwards, our lives have revolved around Vivaan’s condition. From visiting numerous doctors, therapists and experts, to reading every possible book on Autism, watching every possible TED talk on the subject, I have probably researched more about Autism than any other topic related to my profession.
Vivaan continues to surprise us every day by the little things he does, by how much he understands without ever being able to express himself, by how much love he has, without ever giving a hug, by how much patience he has without every complaining about the long and boring therapies he undergoes. It’s been a journey like never before. Its taught me more than any business school can ever teach. Listed below are some of my greatest life lessons!
1. If you search for a cure, you will find disappointment; if you look for uniqueness, you will find happiness.
Like every parent with a child with Autism, I had spent a significant time trying to find a cure for Vivaan’s condition. I read books which spoke about a complete cure and triumph over autism, and I hoped it would magically cure Vivaan too. I believed Autism was a problem and I had to solve it. The more I was unable to, the more frustrated I got.
Soon I realized that I was chasing the wrong goal. If I started looking at Vivaan as unique and enjoy him for what he is, life was fun. Not comparing Vivaan with others was key. At times, we had to overcome the social compulsions of throwing a birthday party like every other family did. We realized Vivaan enjoyed the solitude of the family and cutting birthday cakes socially made him more anxious. So we started celebrating birthday by pampering Vivaan and giving him a free day – no therapies and unlimited access to his favorite object, an iPAD!
2. Time and chance happeneth to them all.
The true source of disappointment was a feeling that life has been unfair. Why did it happen to us? I felt like life had dealt us with a wrong card. Sometimes, we even compared the level of disability and wondered if it was better to have a child with physical disability than a mental one.
However, over a period of time, we realized that every child comes with his own set of challenges (even the perfectly healthy ones). We tend to overestimate our pain and underestimate others’ pain. As soon as we are able to detach ourselves from the expectations of the society, and stop comparing, life become easier.
One of my realizations was, since Vivaan needed so much time and attention, worrying about others meant that much less time we spent on Vivaan. Hence we benchmarked Vivaan as normal (btw, who decides who is normal and who is not?) and started doing everything every other parent would do – go for dinners, watch movies and take vacations!
3. However difficult the journey may look like, Celebrate dancing in the rain and feel the raindrops on your skin
Initially, we worried about all the milestones that Vivaan missed. The fact that he was unable to talk, he was not able to learn the alphabets, he was unable to count, he was unable to clean himself, unable to feed himself, the list seemed endless.
We then decided to celebrate the small milestones instead – the first word he mentioned (No, it was not MA-MA…but iPAD!), the 1st time he rode on a school bus on his own, the 1st time he got a prize (as the most tech-savvy child in his class), the days where there were no tantrums – life was all about celebrating the small things, not the big ones! I framed the first picture he drew. It was just some scribbles.
4. Every disability is a perspective. What looks like a weed can also be a herb
My friend Thorkil Sonne (Founder, Specialisterne), explained to me about the dandelion (a flower, native to Eurasia, and North and South America). Most of us don’t want dandelions in our lawns – they don’t fit there. But if we place a dandelion plant in our kitchen garden, and cultivate it, it can turn out to be one of our most valuable plants.
Dandelions are used to make beer, wine, salads, and natural medicines. Simply put, if we choose to cultivate dandelions, we will reap rewards. The same can be said for individuals with autism. The value of what you see depends on what your level of understanding and accommodation is. So, is a dandelion a weed or a herb? Is Autism a disability or a special ability? It’s all in the perspective.
5. People spend their entire lifetime searching for their purpose; you are lucky – the purpose found you
That was what Dr Kiran Bedi, my mentor, told me when I explained to her about Vivaan’s condition. Vivaan has been the biggest source of inspiration for me. I have realized that “Hope is not a course of action”. Life is too short to leave the problem to someone else.
So I hit the ground running with the help of some of my dear friends and family, many of whom found their purpose through Vivaan. The last five years have been the most significant and fruitful period of my life. I never imagined, that my working in the field of Autism will get me: an invite to the United Nations, a speaking opportunity at the World Economic Forum in Davos, multiple Board positions and meeting with various world leaders. My efforts to create jobs for autistic individuals became the subject of a Harvard Case Study. I am part of the mission to create a million jobs for people on the Autism spectrum.
In the words of our former President Dr A.P.J. Abdul Kalam, “I have a worthwhile mission for a lifetime!”
On Vivaan’s sixth birthday, my wife shared this on her Facebook page:
“There is more to a boy than what a mother sees. There is more to a boy than what his father dreams. Inside every boy lies a heart that beats. And sometimes it screams, refusing to take defeat. And sometimes his father’s dreams aren’t big enough, and sometimes his mother’s vision isn’t long enough. And sometimes the boy has to dream his own dreams and break through the clouds with his sun beans” – from the book Remembering Isaac: The Wise and Joyful Potter of Niederbipp.
This piece was originally published on swarajyamag.com
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