First Person – Bhanu Pande
Most often what the world considers a personal misfortune seems to define your life purpose. You are assigned a challenge that can make you perceive your ‘suffering’ (and what others see as suffering) as a true calling. Such a life changing event happened in our life, when our only child Tanmay — our sunshine boy — was diagnosed with autism, even before he turned 3. It pulled us into a new journey into the ‘autsome’ (my pet term for ‘awesome autism’) land. A journey where we had to learn and relearn everything about life and what drives happiness and fulfilment, as we trudge along.
A trying turn
Autism is a lifelong neurological condition, a developmental disorder that typically occurs in the first three years of life. Autism appears as differences in development in three main areas: Communication (verbal and non-verbal), social interactions and imagination, which can be seen in repetitive play or leisure activities. Tanmay displayed these behaviour even though all his physical milestones were timely, and he had just started to spend a few hours in a playschool. For us, our first born was doing fine with some delay in verbalisation, till the school pointed out that he was different and needed an evaluation! This diagnosis itself took us helter-skelter and was extremely trying for us as parents.
Tanmay is now 18, legally an adult. Today, it feels so good to see him next to me, a bit taller, getting a shave like an adult. From a baby to his adulthood, it’s been a rollercoaster ride for us. Many memories, challenges faced and overcome, a lot of anxieties and joy, but never a moment of bitterness.
Tanmay’s coming into our life filled us with unfathomable joy and excitement. As a baby, he kept us busy at home and I loved being a father. From bathing, cleaning, feeding and taking him for strolls, he was a bundle of joy. With a confirmed Autism Spectrum Disorder (ASD) diagnosis, we were directed to Action for Autism, which has been at the forefront of spreading awareness and teaching strategies for people with autism. That inducted us into our new-found world and like a new learner we started taking all the inputs to comprehend our lives for today and as we look into our future.
Hard acceptance
While I put up a brave face, I took my own sweet time to accept the reality. Now when I look back at those years as a newbie autism father, I can clearly see that life was unmanageable for me. I was constantly worrying about Tanmay, being overprotective and brooding over his future after us. I had become a repository of negativity and felt nobody really comprehended our world. Many a times, irritability and hopelessness would engulf me and manifest it in my behaviour. My wife, Mona, seemed to be coping better and was trying to make others comprehend our world.
Tanmay looked like any other kid of his age, but he was behaviourally different. He didn’t have speech and still doesn’t. He would not interact in socially acceptable ways; he disliked changes in routine and environment and would have serious meltdowns. He loved outdoors and would find ways and means, to escape from our apartment. In all of this, my biggest worries were about societal response. How would people evaluate him? What if they sneer at him, ridicule him? This was unacceptable to me as a father. My instant reaction was to stop socialising. I also wanted to put a stop to our travelling after couple of bad experiences — Tanmay had severe melt downs and became unmanageable — during air and rail travel.
Those were frustrating moments. We loved travelling and socialising, but suddenly life was making me take drastic decisions to create a restricted, and presumably safer, environment for him. During this phase, Tanmay would suddenly wake up at night and expect to be taken for his much-loved car drive. During chilly winter nights, this was a bit punishing on me.
Path to positivity
However, there was a positive takeaway from this motivation for car drives. We started taking outstation trips by road and covered every possible hill station within the proximity. With every such trip we learnt to prepare him for the upcoming travel through visual stories, carry his favourite articles, even his preferred bed sheets and pillow, almost like a camp outing. We even combined our travel with dear friends and family who would be willing to be patient with Tanmay’s rigid schedules and stopovers. This allowed us to have some semblance of a regular life, taking our focus a bit away from lonely planet autism.
As he stepped into his teenage, my worries got compounded. We had learnt that adolescence would be the most difficult phase. Boys and girls with autism have a whole lot of sensory issues, and hormonal changes during adolescence. That’s a double whammy for autism parents. The threat of seizures loom large in 40 per cent of autistic males (Tanmay had a seizure when he turned 13). This made me jittery and even more overprotective about him. The outcome: resurgence of irrational behaviour in me like, shadowing him, barring his independent outdoor activities – swimming and travel. But his therapists at school and other parents of adults with autism have always shown us the brighter side in every challenging situation. By turning my anxiety into small acts of volunteering for the residential centre for adults, engaging in physical activities through playtime, sharing our travails and triumphs in parent support groups and on social media, I have found immense strength.
Little acts, big happiness
While the efforts of raising an autistic son may sound daunting to some, often draining us emotionally and not giving us the energy to keep up with many social expectations, it has given us something much more valuable. We value everything now. We celebrate each moment of Tanmay’s success like his being able to go to a neighbourhood shop and pick up a list of things, which is a real achievement if we compare it to his days of mindlessly running around or, making a meaningless sign, to ask for his favourite drink at a cafe. He has recently been inducted into a vocational group at his school and for us the joy and pride is immense. We realise the importance of persistence, of acceptance, to focus on one’s strengths and to always be open for a new challenge or behaviour. It may be just around the corner.
This life-changing intervention of autism in our lives has been fulfilling — as a couple, as parents and to me as a father. In fact now when I look back, I was never so fond of little kids but now I can see God-like beauty in children who are different and from an autsome world.