Monday, 1 April 2013

April 2: World Autism Awareness Day

Hello Everyone..! Today is a Special Day.

Not only because today So-Saree features it’s First Guest Post, but also because it's
World Autism Awareness Day.
A very dear friend of mine (actually she is more like an elder sister) - Sayuri Dalvi agreed to do this post for me, to create awareness regarding Autism.
Sayuri is a single mother of an autististic 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 post was a shocking relevation, which reduced me to tears.
But the purpose of this post is much bigger…Acceptance. In the below post Sayuri, elucidates how life unexpectedly brought her 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. 
Over to you Sayuri…

 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!
 
Thank you Sayuri. So-Saree is honoured to publish this post.
You can follow Sayuri here.


35 comments:

  1. Great post by a Super mom! Salute!!!

    <3 from: www.thedocndiva.com

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  2. Great going Sayuri. Really proud of you.
    May God bless you and Vihaan with tons of happiness and the best of life.

    Aditi, thanx for coming up with this post.
    Its heart melting one but at the same time tremendously inspiring. Sayuri is a true idol.

    platinumdivinity.blogspot.in

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  3. Really couldnt hold back my tears! U r really strong and so true that acceptance is the key.. Thank u soooo much for sharing this with us! Ur son is adorable and really an angel.. :):) :)
    Great job Aditi!

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  4. such a touching and emotional post !! Sayuri you are an awesome mom, and Vihaan is so adorable !! All the best !
    ✿thefashionflite
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  5. I found this link through Shivali's post at http://platinumdivinity.blogspot.com/; thank you for posting on the topic! It was enlightening to read about your experience, and I appreciate how frankly you spoke. My first glimpse into the world of Autism (spectrum) happened a few years ago, when I worked with twins who have Asperger's....I got a peek at what life looked like for their family. And it made me realize how many people are impacted in a family when one person has Autism. It's not easy to be so open and honest when life is less than perfect, and I find it inspiring that you did just that. Thank you for sharing your story so people throughout the world can gain empathy and be better friends to people who are living with Autism (and to their moms and dads and siblings)!

    Heather

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  6. i am sorry but i couldn't bare to finish this post but i read most of it.. my elder sister is autistic. this could be my mother's life i was reading about except she had me(8 years after my sister,despite people scaring her i might be autistic as well. and a few actually were disappointed i was a girl and not a son who could take care of her in the future.i kid you not)and never left the marriage. my sister went to a school for kids who are autistic. i have grown up watching them. there are different kinds of autism. several of her classmates gave secondary and higher secondary exams through open university. we personally didn't think it was a big deal to do it as it won't help my sister any further. it helped those kids though, as i said the intelligence and cognitive skills vary. she turned 30 this year.
    and i can't type anymore, i will start crying.

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  7. Thanks Aditi. Thank you for opening up a new dimension and perspective of life.My heart goes for Sayuri and also makes me feel so proud of her. she is truly an inspiratio. After reading this, its like I hit a pause button only to realize life is so much more than to worry about vain things. Hats off Sayuri!! You are an incredible woman, have fun!! Life is beautiful!

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    Replies
    1. Thanks for ur kind words Supriya..Sayuri is my inspiration too.

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  8. amazing and touching post! would you like to follow each other? let me know!

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  9. Such an amazing post. It's great there's a day like that! What a great mother :)

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  10. wat a beautiful post aditi:) im so touched. its beyond imagination how a mother loves her child.

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  11. That brought me to tears. To deal with autism and to also have to deal with a divorce at the same time! I am proud of Sayuri and Vihaan. They have fought and won so much!

    Thank you for this post, Aditi and Sayuri. It has made us all learn and understand so much. Thanks once again.

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  12. Kudos to strong and positive moms like Sayuri!! We are stronger than autism! Awareness and sensitivity is essential to make lives of autistic kids and their families richer. Great post! Hope you are having a wonderful day!
    -Jyoti
    Style Delights Blog

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  13. So very touching!
    Life truly is a battle and our aim is to fight everyday no matter how difficult it is! My salute to the soldiers who do not give up, who fight and who win or die fighting!
    Love
    Juneli from Fashionably Yours

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  14. super sweet this is, sweeb proud of you i am, and super good mum you are.

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  15. Hats off to the super mom...Such a courageous lady..Thanks Aditi for letting her be a guest editor..and opening our eyes t such a brave story :)
    magnefiestaofmumbai.blogspot.in

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  16. Such an amazing post! Inspiration! :)

    Thank you so much for your lovely comment

    Maybe you have time to see my new blog post: Dazzling Bling :)

    Love
    Akanksha

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  17. Beautiful, heartwarming, touching. What an intense post..
    Hope to read more such posts on your blog, Aditi.

    And Thankyou for your sweet comment :)

    Shubhi's Revels!

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  18. Wow...Heart touching...

    jennysbicycle.blogspot.in

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  19. Such a great and heartwarming post :)

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  20. This has been an eye-opener, very moving. Proud of you both Sayuri and Vihaan. Sending blessings you way. Your story may help a lot of others who are reading this. And Aditi, this was a great initiative on your part too.

    Much Love
    The Heiress Blog

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  21. Following you on GFC and bloglovin..
    magnefiestaofmumbai.blogspot.in

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  22. thank u so much for the comment Aditi !! Am sad u didn't win the giveaway... hope for the best ,maybe next time :)
    ✿thefashionflite
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  23. Its so touching! Hats off to Sayuri! And so nice of you Aditi to feature her!!! :)
    FASHION PANACHE BLOG
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  24. Too good really liked the post keep the good work goin :)

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  25. Salute to a super Mom.. moved me to tears..

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  26. A salute to you Sayuri. You are a true inspiration for other women/mothers.

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  27. Salute to Sayuri !! She is an inspiration to all of us.

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  28. HI Aditi

    While reading some Indian Medicines, learnt below which may be useful in fighting Autism. Not sure how much it helps
    "The Ageold punishment of doing sit-ups while holding ears actually makes the mind sharper and helps for those with Autism, Asperger's syndrome, learning difficulties and behavioural problems."

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  29. Hi

    Very nice collection. amazing :)

    Visit Us : Indian Outfit - Buy Latest Sarees | Salwar Kameez | Kurti | Lehenga

    ReplyDelete

 

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