Thursday, February 23, 2012

Don't force me to be NORMAL. I am just different.

                                      The journey begins...

A tiny white bundle entered my world on the 8th of August,1993. One look at the little angel changed my world forever. We named her Amrit, the nectar of life. Being a parent is the beginning of a journey and our journey began with Amrit, little did we realise then that it would be a life long special journey.
Amrit filled our lives with joy and turbulation, each hitting us in phases. She started achieving all her milestones quite normally and it was such a joy to see her hold her neck, to see her hold a spoon, her first crawl,  her first step,  and then one day suddenly she went into withdrawl refusing to utter a word.She became quiet, as if somebody had turned on the mute button. We coaxed and cajoled but she chose not to respond. Being our first born, we labelled it a result of over pampering. Time passed and with each passing day, our hopes and desire to hear our angel speak also dashed. I was dying to hear her say 'Mamma'.
Amrit crossed 2 years and it was time to admit her to a play school. The question was how? She did not communicate. How would she express her needs? Who would understand my darling's unspoken expression? Who would understand her need for basic things? My little angel shirked from physical contact, she did not understand play, she laughed when somebody fell; how would she , a delicate, small baby cope with all the strangers around? I felt restless, unable to make a decision, I prayed to God for a miracle. I hoped that with kids around her she would suddenly resume normal conversation, all the time believing that there was nothing amiss in her development.

Holding my fingers, we walked inside the gates of the school. More than Amrit, I was nervous to let her go. Amrit, oblivious to the new phase she was entering, was smiling. I was asked to wait outside the school gates. I held on to my breath, waiting to hear the first call of panic from my angel, waiting to rush inside, to hold her in my arms, to comfort her, to wipe those tears streaming down those beautiful, big eyes. And all the time wishing that it wouldn't happen, wishing that like all other kids, she too would come out of her class, excited to share the details of her first day with me. But my fears came true with Amrit yelling and screaming and crying,  refusing to take off her shoes, not ready to sit in a room full of strange faces. I quietly brought her back home.
Amrit gradually started displaying compulsive attitude. She refused to put off her shoes, so much so that she would sleep with her shoes on. So we got her 3 pairs of the same shoes. She would not let go off the sachet of clinic plus shampoo. Her palms would be sweaty and smelly but she held on to the sachet for months. So we would replace the sachet with a new one everyday.  She would outgrow obsession for one object to be glued to another.

She could not adjust in her school and we decided that the school was not good for her needs, little did we realize even then that there was a problem with her. I decided to look for a better school and then I came across the school that mentored and treasured my darling, a school that accepted her difference, a school where the teachers treated her in a special way and yet did not shun her. This was Doon Blossoms.

I joined the school along with Amrit thinking it was the best possible way to be near her, to assure her and to look after her if need be. Amrit had beautiful long hair which she refused to tie. She did not want to wear socks and shoes suddenly. She was a sight in a school where all other children were immaculately dressed. I would cry with embarrassment and think of ways to hide her whenever we had visitors to school. I was myself a play group teacher and tried to shield her inadequacies as best as possible.

It took me more than six months to come to terms with the fact that Amrit did not behave like other kids and it was then that we began the rounds to the doctors. Any doctor, any institute suggested, we would make sure to visit. It was frustrating. No body was able to help, to guide. I don't think words can describe the way me and my husband felt. Our life was in turmoil.The unease from sensing that something was wrong, the seemingly interminable and relentless quest to find out what the problem is did take a toll but whenever we looked at the smiling face of our daughter and her carefree world, no matter hoe different it was, kept us going with a renewed energy.

We approached institutes that worked for mentally retarded children but did not have the heart to put our daughter there. We then accidentally stumbled upon a speech therapist who agreed to come home to give speech therapy to Amrit. It was hard work for 2 years. The therapist gently guided Amrit into the world of words. I vividly remember the day when after a month of the therapy, Amrit still would use gestures after the therapist left to ask for milk or water. She would hold my hand with her little hand and show me the object of her desire and I being a mother would quickly give it to her. It was then that the therapist came down firmly on me. She waited even after the session and did not let me give Amrit water unless she spoke the word water. My darling cried and cried, her throat getting parched, but refusing to utter the word and the therapist would not allow me to get up. After what seemed like an eternity, she finally said water and that was her first word. How we cried at our accomplishment. It was later that we started to find happiness in simple accomplishments, what may be an easy, simple chore for all of us, was an accomplishment for Amrit.
There are so many firsts etched in my memory; the first word water, the first poem that she sang, the first time she learned to spit, the first meal she had all by herself the first time she learned to cycle, the first time she stood before her dad on a scooter ride. It seems like yesterday.

There were days when I would end up in sheer frustration.  I remember so many days when both of us would break down into tears not being able to cope up, not being able to understand what to do. Friends, neighbors pitched in. I will always be indebted to so many who helped me cope up, who held me strong when I was on the verge of breaking.

One day my husband stumbled upon a newspaper article on Autism( the first time we heard the word) that also described certain typical symptoms and we discovered that Amrit fit so well in all that was mentioned. That marked our journey into the world of autism which continues even today. We searched libraries for more information, we spoke to friends, doctors, anyone who had heard anything about autism. Internet was new those days and I sat glued to the screen in a cyber cafe for hours looking for some insight, some input. There was anger, frustration, sadness- this was happening to us! The question was Why? Why me?
It took us time to come to terms with the fact that Amrit was autistic. Once realization set in, there was more confusion, more anger; acceptance came later. Like all parents whose children are diagnosed AUTISTIC, our little world seemed to crumble and fall. We had to mourn the loss of the life our daughter was supposed to have.  She will probably never have a friend and get married, she will need life long care and support, who will take care of her once we are dead and gone. Nobody realized the impact it had on me and my husband. For a while we were even angry with ourselves.

I turned overtly religious, praying for miracles everyday. We began to believe in magic and superstitions. We began approaching holy men, hoping that would give us a magic potion to cure our daughter. Along side we were doing rounds of visits to doctors, psychiatrists, neurosurgeons, pediatricians and what not.

1 comment:

  1. Each day is so full of life.You learnt through your journey and your thoughts made us learn.
    And especially the talent with which Amrit is being bestowed is not less than a miracle.She defines herself with her colors.
    I wish i could hold the brush the way she does and play with colors......but all I can do is admiration... :)