I am part of a Facebook group where I first heard about Chatoveracuppa. I have been very interested in some of the stories. One day someone posted a link for Light It Up Blue and asked if anyone had a story to share about Autism. I wanted to share my sister’s story because I do not want others to go through what we went through. I do not know how to write well so please excuse me. But I am sure my story will touch you.
We are two sisters. I am very close to my elder sister. She is married and has a four year old child. She is a very beautiful child. When she was born everyone was very happy in the family. But my sister felt something was wrong. Everyone told her she was thinking that way because she had become a mom for the first time. When my niece was two months old, she did not smile and look at any one. My sister got worried. But everyone again said the same thing to her. By the time my niece was 1 year old she was not doing many things like other babies. My sister was worried about the milestones. The doctors said everything was fine. Everyone in the family kept saying everything was fine.
But they were lying to my sister. They spoke when she was not around that the baby had something wrong. A lot of pujas(worship) were done. Priest came to bless the child. They said no black in the house and everything was thrown out. My sister started fasting for 3 days a week. She walked barefoot with her husband to a shani (Hindu God)temple every Saturday. This kept on going for 6 months but no change happened in the child. At that time I was in a far away hostel so I came to know about all this over the phone only. Then I got a job in my home town. When I returned my sister cried a lot and told me everything. I felt very angry because if there is a problem we need to see specialist and not priest. In India whenever there is a problem with a child we start thinking the child is cursed, handicapped, some say mental problem. Everyone talks about future and what will happen. But for future, we need to do something today.
I convinced my sister and her husband to leave all fear and worry about people and get medical help. After lot of tests, therapies my niece was diagnosed with autism at the age of 2 year, 3 month age. Autism has a very wide range /spectrum. She has autism that affects her speech, social skills and some of her motor skills. I thought my sister will be very sad with the diagnosis. But she thanked me and said now she did not have to listen to anybody and follow anything superstitious. For last two years, my sister and her husband have concentrated on my niece’s therapies, exercises, diet and her treatment. My niece is 4 year old now and can eat on her own and do many small things, talks words that we understand, loves to play in the park and with blocks and water. She does not like strangers or crowd or lot of people, loud noises and bright light. She is very affectionate to people in the family who love her.
Our family has still not accepted her. They keep pressurizing my sister to have another “normal” child. My sister says she has a normal child. Some blame her for my niece. But autism is not genetic. No doctors could tell us the exact reason of what causes it. There is not one cure. You have to try many medications, many therapies but if you love the child and work hard with your child, the child will be able to do anything.
I am writing today so that people stop all superstitions, stop blaming the mother always and learn more about autism. It is not a mental problem; no one should call it that. There are very small, beautiful cute little kids who have autism. You cannot even tell by looking at them. It is not a curse. You can help the child with medical help, therapies and accepting the child.
I hope my story will help some other mother like my sister to ignore everyone and do the right thing for their child. Don’t be shy. There is nothing wrong if your child has autism. If all of us start thinking openly, it will be easy for the kids with autism and their parents.
Earlier this month we had posted “Light It Up Blue“. We also sent requests on forums for parents dealing with autism in children to share their stories with us. Stories that would help another parent open up and talk about autism, their struggles and inspirations. We did not hear any until this morning, when this story landed in our Inbox. Please take a minute to read it. There is still so much of ignorance and alienation in the society that it will surprise you. A lot needs to be done to break out of it. 1 in 68 is just a number. Acceptance is a gesture not a number.
As per the request of the storyteller, we will respect her privacy and publish this anonymous. Only if there was more support in the family and within the society, she may have written this under her real name. That itself tells you how much more needs to be done.