Saturday, October 20, 2012

Mom's the word

At the age of 35, how many of you would like to start school all over again from kindergarten? Not many, I presume. There is so much to do at that age. There is a husband and a house to take care of, parties, night-outs, romantic holidays, shopping and of course the self-defining career. To start school again is not something that would feature on the list of priorities of a modern 35 year old woman.

But I know a lady who did this. As a mother of a five year old son, diagnosed with autism, she decided to join school again. No school was willing to admit the boy. "There are schools for children with special needs, please take him there," they said. The special schools were quite a dampener. They did nothing more than babysit the child. This was unacceptable to the mother, who was neither in denial of her situation, nor willing to give up on her son. One reputed school following the international curriculum accepted the kid on the condition that the mother was willing to take all the classes with him. And so she did. giving up on her career, her personal joys, her 'me-time' she started school again with her son.

Autism is viewed as a tragedy. As a disorder that robs children of their lives and parents of their children. It took a lot of courage and tenacity for her to grapple with her son's development, autistic diagnosis and finding the right help.School in the morning, followed by some recreational activity and then therapy in the evening. Life revolved around this routine. She must have missed movies, she must have had to forgo reading the latest bestseller, she would not have had time for beauty sessions and dress trials. The things that we take for granted had stopped for her. But she had the joy of being useful to her son, of being able to help create a future for him. To start him off on a path that would eventually make him self-reliant in her absence. I think she saw that as a better trade-off.

"A happy and expressive child, becomes visibly confused and uncomfortable, while therapists curiously look on and continue prodding him," she wrote in her diary, during the early years of therapy. I can only imagine the frustration and stress of wanting to help her child while protecting him and letting him be a kid. She continuously felt torn between listening to her maternal instincts of wanting a happy, relaxed childhood for her son and listening to the professionals who advocate for stringent treatments. She must have felt  helpless not knowing what her son needs and wants; never truly knowing what he is thinking. While he made great progress some days, other days, it would have felt like taking several steps back. The school was always encouraging, she said, the therapists rarely so.

When the focus of a woman shifts from the husband to the child, it takes effort from the husband to keep the marriage alive. In this case, the focus was centred on the little boy, everything else seemed hazy. The relationship between the couple suffered and grew distant. A lot of things had to be forgone, like moving to a new city for a better job, social interactions were not easy, couple-time was less as the mind was occupied and the body, tired. The result was a woman who did not want to see this gap and a man who delved deeper into his work. As parents, however, they continued to be the band on which the little boy could always hop and play.

She was jealous of the little worries that the other mothers at school had.  She, at times, resented other mothers who eased through decisions for their children and worried over whether the birthday gifts would be liked by the child, or whether it’s time to move out of the crib and into a big-boy bed. She did not have the luxury of such indulgences. When she was done with the day's study with her son, she worried about supplements and approaches to try and encourage him to eat food. She lay in bed and wondered how her son would ever be okay in the world, how she could help him love who he is and have his needs met. She could never be easy. She could never be still. Always, she was running, moving, searching, finding. Always, she was fighting against the unbearable default of failing her son.

Years passed, some were filled with angst, but mostly they were years of learning and being happy in small joys. Last year she graduated with her son from school. As they shared the stage with their degrees, a woman of 53 and a boy of 23, the entire crowd erupted in applause, and why not! This was a journey that tells the story of an exuberant boy, who loves art, reads music, sings “Bohemian Rhapsody” in its entirety, makes videos on his computer, hugs and cuddles his parents, and is much more than his diagnosis; and it is also the story of a mother who believed that she could help her son.

As we celebrate Durga Puja in all its fervour and gaiety, and especially today, Maha Shashti, which is a day that is dedicated to the well being of the children, I dedicate this post to the mothers of children with special needs. The power, the energy, the fighting spirit is not always found in myths and legends. They are, in fact, a depiction of mothers like these who never say never and strive continuously to make life better for their children. "There is no tragedy if you don't choose to see one..", she says, and I believe.

21 comments:

Nikita Banerjee Bhagat said...

Wow...that is a lot for someone to give up. Brilliant post, Sujata!

Happy Durga Pujo to you and your family :)

KParthasarathi said...

What a tremendous determination and sacrifice by the lady.It is not for a few months or yearsbut for a very long period.Hats off to the lady and her husband .The narration made my eyes moist.
Happy puja,Sujata

Kavi said...

Fantastic ! You come up with such brilliant posts.

I dont know of this lady that you mention. But I only know of what a determined parent can do.

And how wonderful it is to remember during Pujo! How often we miss it all in the quest for the 'next big thing' !

Makk said...

I dont feel I have words for the lady.

My "Shashtang Pranaam" to her.


Thanks to you for sharing.

Sumandebray said...

That was power writing...

anilkurup said...

There are exceptional people. Or is it that we fail to understand that there is something exceptional in each one of us?

sujata sengupta said...

Nikita : True. Wish you and Himangshu the same. Have fun.

@KP : Yes, There are only two approaches to any situation, adapt and make better or give up and cry. It takes a lot of courage to do the former.

@ Kavi : Thanks Kavi, when there is such inspiration around, it is dumb not to come up with them. Yeah we miss the important things in the heat of the moment, only if we stopped to take a deeper breath, the minutest thing would become dazzlingly clear.

@ Makk : Surely

@SDR : It is the least we can do for such powerful people, to share their story in a way that inspires many others.

@Anil : maybe both, tough situations create tough people.

Balachandran V said...

It was a beautiful post, Sujata! Life is all about priorities, isn't it? You chose according to your priority. That this brave mother forsook her personal pleasures and comforts for the sake of her child is an inspiring lesson in that nothing can stop us if we love what we do.

Destiny's child... said...

This kind of determination can only be displayed by a woman of great courage and confidence. Thank you for sharing this story. :)

Gymnast said...

Wow...hope the son goes on and lives a happy independent life and makes the mother's sacrifice fruitful!

Must give it to the lady...but then again it is not called sacrifice if you do it with your full heart , is i t?

Happy Durga Puja to your family. Say hi to Toshali and Bond for me!

Arun Meethale Chirakkal said...

What to say, whatever I say; words can never do justice the lady’s spirit, her love and concern for her child. A great soul, one of the greatest who walked on the earth!

Devilish Angel said...

Happy pooja...

Devilish Angel said...

Happy pooja...

deeps said...

This is a touching one… I m sure this is just a solitary one that came to the fore..
Have you watched munnabhai MBBS? …

R. Ramesh said...

baappree..at last...now it is easy to comment here sujata..also, now i have to tell nikita to also do the same as u did...it is imp to reach her blog comment section...anywy..will be back again here later..cheers n wishes always..

Sanand said...

There is so much to this human life that we are often not capable of looking beyond ourselves. This post, with its nuances, opens up hearts. Keep writing Suajata. One of the best posts I have read and the most touching too.

R. Ramesh said...

nice to be back here sujata..

Balachandran V said...

Dear Sujata, I was terribly upset to hear about what happened to Max; I wanted to write in detail about it, then I totally forgot! But, I was somehow under the impression that I had written, can you believe it!

Long ago, I had written to you that bringing a dog into the family is like bringing a new child - there is no difference. There is one - it is that while the human child grows to an independent person, your dog remains dependent on you for its entire life.

A few months ago,P and I had thought of going away to Bangalore for a few days; we went around to check out a couple of kennels recommended to us and we were horrified at the conditions - not the hygiene, which was okay, but looking at the faces of the abandoned dogs, whether for a few days or forever, we decided, come what may, we will not leave our dogs at the kennel.

Max could've experienced a mental trauma that may not be visible. I hope he is healthy now. When you have to leave for India or somewhere else, see whether you can keep him with reliable friends who will take good care of him. That is the only solution until you can find a kennel to your complete satisfaction, where you can ensure that good food, hygiene and exercise will be given to the dogs.

Looking at those dogs in the kennel where each were in a kind of prison, 4x2 compartments and the way they looked at us forlorn, miserable - it was heart rending; I wept.

Like Superman's uncle said - With great love comes great responsibility! :-)

I am sure you find a good friend who will love and take care of Max while you are away. Don't worry! :-)

deeps said...

Happy Diwali to you

R. Ramesh said...

buddy return to this blog..cheers n wishes

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