The lessons i refused to learn

The lessons I refused to learn

Through my experiences as an autism mom, and even before that, I learnt a few lessons. Some the hard way and some as epiphanous moments. On the eve of World Autism Day, I look back at the intense journey and dwell on the lessons that I refused to learn.

• I refused to learn to accept the limitations of the condition

I learnt that miracles don’t happen when I held a dying child in my arms, hoping and praying that my love and prayers would save him. During that long drive to the hospital, in a deluge I have not seen again, no miracle happened. Way past midnight, in that dim Emergency Room when I handed him over to the doctor, no miracle happened. He said gently that he would give the death certificate. Miracles cannot fix certain heart conditions in little children. Two years later, the moment Pranav was born, I sighed with relief because his heart was beating fine, confirming what the foetal echoes had predicted. Soon, however, he was engulfed in medical paraphernalia and my numb brain tried to register unfamiliar terms like exchange transfusions and lumber punctures. After a month and a half, I took the frail bag of bones home, clinging to the statement that he had managed to survive against all odds. Vague anxiety never left me even though he sprang back to life and was the most endearing toddler. Naturally, my concerns when he was two were brushed aside. In the same hospital where he was born, the paediatric neurologist confirmed what I already knew. Yes, it was autism, but what mattered the most to me was that he could live. Rest I could deal with I thought. I refused to learn the limitations that come with the condition. I had my answer to my incessant question to the Almighty when Nikhil was gone. ‘Why did I not get a chance to do my best?’ Here was my chance and it was up to me to make the most of it. I was acutely aware of the onus on me, and there was no denial. But I refused to believe in any prognosis or a narrative of limitations.

• I refused to accept that I could not be the ‘village’ to raise my child

I had learnt that red flags are real. The more one brushes them under the carpet, the more monstrous they become. Red flags pre-empt that there might not be rising to the occasion, empathetic responses or ownership. I refused to be cowed down by them and the learnings of this lesson. It took a while, but I refused to wait and watch and not draw upon the indomitable spirit that one can evoke within oneself. One does not have to rely on the hope of a reassuring look, a helping hand, or a validating understanding of what the journey is like. An untrodden solitary journey where one is squarely responsible for the actions and the consequences is also worthwhile. There could be treacherous lows but there are thrilling highs. Yes, I love the adage that it takes a village to raise a child but in the absence of the ‘village’, I refused to be limited by it. I also refused to learn that the silent observers of the journey unfolding are just silent observers. Their very presence is strength. The day the diagnosis came, I was ready with my sleeves rolled up, but I was still figuring out what I was ready for and what my battle was. My mother broke that ice. During the day, she asked me to just observe her ‘Angad’ (she had found a delightful analogy for his fixations in the immovable Angad’s foot, a reference from the tales of Ramayana). When hungry, he dragged her to the kitchen and handed over to her the ladle. When he wanted to play, he dragged her outside the house and indicated for a support in jumping on the stairs. I got a hold on my first two tasks for the day and the rest followed.

• I refused to learn to accept the beaten path

I had learnt that our children will learn a certain way. I had learnt all that pedagogy and methodologies had to offer. And I saw it work wonders. While putting the jigsaw pieces of the learning graph together to get a tangible and comprehensible picture however, I refused to believe that any stray diversion into living for the moment, following the natural instincts of the child and not the IEP and letting go for good of an effort to learn certain skills, no matter how much indispensable-sounding they are, surmounts to diluting the efforts. I am acutely aware of the stands that should have been more emphatic and of the mistakes, whatever the reasons may be, but I refused to learn that there is only one way to go about things and that Pranav has to be brought to the right path. I preferred to follow Pranav instead and the way that he naturally followed was the right path for me. And I refused to worry about the ‘here and now’ moments. These could be breaking into a jig with Pranav during serious study time because the song playing on the radio demanded it or abandoning the meticulously planned day’s routine and leaving the house for a photo walk, letting Pranav decide in which direction the car will move or believing in his dream when he started sending me screenshots of billboards, saying that he wanted to be on them. Many people have asked me how I managed to make him a fashion model. Unless one is looking at and looking for ‘special appearances’ in the modelling world, one cannot make it happen. It requires an inborn inclination and aspiration. Yes, support of that aspiration is critical and crucial.

• I refused to accept that the special sibling should be a parent

Ironically, my initial learning was limited to the fact that special siblings are an asset and whether it falls on them or they take it upon themselves, they are also brilliant when they play the role of the other parent. They understand the special sibling and with selfless love, even devote their childhood and carefree moments to them. This is a priceless scaffolding and I saw my daughter do it so earnestly. Even though I ensured that she had her own routines and pursued her own interests, almost everything, including her choice of career, was ‘governed’ by Pranav. However, I learnt to refuse to let this narrative take over her life. I know she is like a second parent to him. I know her first thought when she wakes up is about Pranav and her last thought before she sleeps is him and she stretches herself to be connected with him constantly (I think I can safely assume that this holds true for all special siblings, especially the older ones). But I refused to pass on my ownership to her even though I find myself depending on her for every decision pertaining to him. And I refused to let go of the fact that looking after a special sibling after I am gone is not the only thing that she has to be mindful of. It is one of the things that she has to be mindful of. I miss her but am glad that she is away from the day-to-day hustle, the pitfalls and the challenges (she studied overseas and now works overseas). It does not make her love for and commitment towards Pranav any less.

• I refused to keep explaining my journey to the bystanders

I learnt that if the journey is different, it is not understood. When people do not see you falling into stereotypes, social and familial, you are an oddball. After an initial effort, for an unnecessarily long time, in attempting to explain the dynamics of my situation, I refused to be cowed down by any judgement. I refused to feel bad about not having time for people who were never there and about not giving any merit to situations that offered only stress and negativity. Many autism journeys will echo this. A special situation offers little support but lot of opinions. Also, while I was busy saying a firm ‘no’ to the ridiculously too good to be true offers that would lead to instant stardom for Pranav, choosing to build, instead, step by step, a foothold in the mainstream fashion world (this was akin to what Pranav had aspired of), i was also fielding questions about what the initial hullabaloo of the media attention led to in terms of work. I refused to feel the need to explain what we turned down and what we would not.

What I have attempted to pen down is an ode to all the primary care givers who go through learning and unlearning and arrive at a wisdom which is theirs and works for them, even if it is not the set norm. I am borrowing one of Pranav’s favourite lines to conclude: ‘May the force be with you!’ Well, I will take the liberty of including myself and say, ‘May the force be with us!’