Tuesday 15 July 2014

The Story Of A Mardaani

When BlogAdda announced the Mardaani Blogging Contest, I couldn't think of anyone else than Sayuri.

You always read and hear about great personalities and get inspired.
But I have been lucky to see and know such a person in great proximity.
Sayuri is a very dear friend of mine ..actually she is more like an elder sister.
Today I want to share her story.
Sayuri Dalvi is a single mother of an autistic child and has run in numerous marathons for Khushi, a registered NGO that works for the cause of improving the life of children with disabilities; Autism in particular.

The below post elucidates how life unexpectedly brought Sayuri face to face with Autism and at the end, you will realize she is a Winner all the way, because she just doesn't know to give up.
 A True #Mardaani I would say.

A nervous never ending wait at the psychologist’s got over after waiting for about 25 minutes. 
We were called in (my then husband [we are divorced now], Vihaan and myself). Vihaan was anxious as expected, it being a new strange place. He was given tasks. 
He was non verbal at 22 months. So obviously, most interventions were observations around his motor, fine motor, auditory and visual processing, cognition, tactile and sensory needs. He was all over the place. I am sure these words sound Greek to most. They did to me too then. Thank God for technology and Google!!
Vihaan gave the least eye contact and even screaming his name into ears gave absolutely no response. It made me think if he was deaf or that if he knew he had a name and you are supposed to look when you are called out. No child blabber and gibberish, no baby talk. (How sweet those terms sound... Hard luck I never got to hear them). No chewing of food until he was almost 18 months and I cleaned puked meals almost thrice daily. (Doctor, but he has teeth, how can he not chew). 
He only liked cuddling me and barely liked touched by anyone else. (Oh, may be he such a mamma’s boy, I thought to myself). He was almost getting closer to his second birthday and he still didn't call me something. (Now isn’t that every new mommy on earth dying to hear). Tantrums and behavioral meltdowns were violent from throwing a metal car at the fan or anyone closer (you got saved only if were agile enough to duck yourself) to self harming, head banging till it bled or if I had a lucky day, it got away with flinging of any piece of furniture in the vicinity. He had sleep disorder ever since he was born. I didn't remember a single day I had sound sleep or a matter of fact ever slept. I used to fret visits to the barber or cutting nails at home. He would go into crying spells when I chopped his nails and we needed four people to hold him at the Hair Dressers'. To top it all, he would have pooped out in his diaper out of fear and anxiety by the time the session ended. There were so many things that would happen everyday that life perpetually had become a living hell and I wondered if this was really what motherhood was.
Waiting time always brought back horrendous memories. The psychologist watched him for an hour. (When most of the doctors and pediatricians couldn’t make out what exactly this was).
Your child obviously is Autistic. He has ASD (Autism Spectrum Disorder) – pat came her reply.
The moment she uttered the Diagnosis, it had a dramatic effect on me, just like they show in movies, the only difference… I saw it in reality. I wished this was all a bad dream. But the warm flowing tears were a reality check. It was real. My son had a dangerous sounding disorder I had never heard about. 
AUTISM – the word kept ringing in my head all through the drive back home. I was numb, feeling helpless and the world around me had shattered. My marriage was already in a wreck  and Vihaan’s diagnosis was a blow on it. We further drifted apart and I was in no mood to save it. They say, it takes two to tango and I had seen the spark gone. A lot many reasons for adulterated marriage – huge age gap, dishonesty, disloyalty, cheating and abuse - physical, verbal and emotional. It felt like a conspiracy and I indulged in blasphemy. I cursed God till I had no words to go further. I cried every night until I would choke on my tears and fall asleep exhausted.
I read books and searched the internet about Autism which drove me nuts. Every blog or article would scare me beyond imagination. I was in a denial for a few months. I couldn’t accept that fact that my only child would be ‘special’, a label which he would carry life long. I would never see how a normal child behaves, reacts and grows. Instead what started was a series of therapies – speech, occupational, sensory integration and group. Every week would be drilling and hammering, grueling tough sessions of therapy. Vihaan would sometimes not cooperate and things would get difficult. School became a dreadful trip. He went to an inclusive school but later I realized he couldn’t handle long hours and would throw tantrums sometimes resulting in unintentionally harming other kids. I would invariably get called to school. But thankfully, the principal and the teaching staff were warm and caring.
Eventually I realized Vihaan couldn’t cope. Otherwise seemingly easy activities like a dictation or copying things from the board got tough for him. Attention span was less and he couldn’t concentrate on the teacher and would drift elsewhere. A few years at school went rough. He would be bullied because he was repetitive. Children laugh at him because he self talks. He has a funny mannerism and body language and I have often seen people have a laugh at his expense. 
Meanwhile my marriage had almost fallen apart. I had a tough time because I had no help around Vihaan. I would work, cook and drive Vihaan to therapies and classes. I had also applied for a divorce petition in 2008 which finally came through in 2012. 
At the same time, Vihaan also got through another school, an international school for kids with disabilities. He started it in August 2012. Since then, he has a fantastic change in his personality. He has become very social, completely aware and curious of his surroundings, a lot more independent with functional chores and has progressed well with language, though his learning language is universally English. But this has been a long journey from what we started a few years ago. Today I am cordial and friendly with my ex husband ( though I am still puzzled how can someone who gave me a tough time for almost 11 years mellow down so much).  Perhaps you value something when you lose it. I don’t intend to turn back though. He will always be an ex, no matter what!!
My son is my rock. He taught me a lot of lessons. I started believing in karma and I believe there is redemption. It comes in any form. There is no escape; we have to pay in some way. AUTISM made me a better person. Today, I am no more vain, proud definitely, because I have emerged a strong survivor of circumstances. I am responsible, accommodating, patient and grounded. I save and invest. I live for the present. 
In the entire turmoil which evolved me, I developed a hobby. I was always an athlete. I took up running again to vent out frustration, anger and despair. 
I want to quote a few lines I came across a friend’s blog once…I relate to them as if written for me –

I am a distance runner.
I have been trained to keep going even when it’s hard. 
When it hurts. When it sucks. When I don’t want to.
I look past it all. Relentless, call it what you want – stubbornness, determination, endurance, guts.
Deep down, I don’t know how to give up.

After Vihaan’s diagnosis, I never thought I would bring him till what he is today. Though we have a long journey further, I am confident I have made a genius and he will do me proud one day. We’ll try..overcome obstacles and move on.
Autism is a neurological disorder and the causes are yet unknown. It can be genetic sometimes. These individuals are just like us. It is a social disorder, so most individuals find it difficult to make friends, hold onto a social conversation or understand jokes, sarcasm and diplomacy. They mostly remain simpletons; manipulation not at their discretion. Many of them cannot emote well, so they do not fall in love, marry, or have children.
 I was obviously shaken when I gathered I wouldn’t see Vihaan do things we would love our children to experience and enjoy. It no more deters me. The aim is to make him an independent individual. They just need integration, education in a unique direction….that’s when you know you are blessed with a diamond, uncut and unpolished. We just have an extra effort. They are different, not less. They need our acceptance! 

This post is my entry for I am Mardaani activity exclusively at BlogAdda.com for Indian Bloggers.


  1. Great story of your friend Sayuri. She is one strong lady. Bravo to her. Thank you for sharing her story, Aditi. Hope you win the Mardaani contest.
    ❤ Amena.
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  2. This is so touching. Raising a child as such brings new challenges everyday. Kudos to Sayuri for raising a special child with all her might and resources. A true Mardaani, indeed.

    ~ Seepz

  3. Lovely post! She is a true braveheart.


  4. Hats off to Sayuri and her son! Her son too because in his own way he has made tremendous effort to learn and grow. As a society and a community and as mothers, it is our duty to be sensitive to mothers like Sayuri not because we pity them, but only because we highly respect them!! It takes a very large heart and a beautiful soul to do what Sayuri is doing. Please pass on our wishes to Sayuri!! Cheers!



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