GRANDPARENT SPEAKS

Shishir Kant Mishra

Our story actually began when my second granddaughter Roshnee was born. By nature I am a child lover. I can handle new born with comfortable ease of a mother. I play with them and enjoy their company. In Roshnee I noticed that she wont look at the rattle, wont look at the light when pointed and whatsoever sound I make she wont look at me in the eyes. Simultaneously her mother [ a doctor by profession] will say this girl is hiding something in her and will reveal some times later we all laughed. Roshnee grew like any other normal child, all mile stones were age appropriate. Once when not even 2, when she first observed Cranes [Saras in Hindi] at a zoo she raised her hands high up and said Crow itte Bade (italic words in Hindi) [Crows are so big]. We also saw some unusual pattern in her behaviors. She would take 2 glasses and will transfer water from one to other without spilling a drop. We were amazed. She would walk for over a Kilometer [still below 3 yrs.] without asking to be lifted and we marveled at her stamina. On the pavement she spotted a metal knob head used by municipality to mark location of underground tap and would go round and round and we joked that she is mother earth going round the sun. In the house she hardly sat and always kept walking from one

room to the other throughout the day. We considered her a very active child. She however never responded to her name as if she didnt listen but she turned immediately on hearing just a faint crackling sound of the wrapper of some toffee or metallic sound of a coin dropping. She never cried if some other child took away anything she was busy with. [I wouldnt say she was playing with, because she didnt seem to play, let us say she was just handling it]. She wouldnt be attracted towards other children. Slowly it dawned on us that this was not usual pattern and something was terribly wrong somewhere. Her mother learnt it was Autism.

always wanted to with her younger sister and added that whatever be the case she was her daughter and she loved her and accepts her as she was. The importance of these words and total acceptance of my daughter of Roshnee and her Autism came to us thick and fast. Till then we--my wife and Iand my daughter, her husband and their two daughters were living nearby but separately. At that stage, we took some far reaching decisions. We decided to live together so that we could devote our full time to Roshnee. Roshnees parents would pursue their career which for doctors anyway starts late. I would wind up my business. Roshnees parents reposed full trust in us in the handling of Roshnee without which we couldnt have moved much ahead. We decided to

learn more about Autism.

By this time many more features of Autism showed up. Roshnee stopped speaking. She will only pull us towards what she wanted. Her sleeping pattern had gone haywire. She would not sleep till 1 or even 2 AM and would get up early say by 6 in the morning and still remained fresh like a lark. Early intervention was provided through those who knew what Autism was.When Roshnee was 4 years , we learnt that one Smita Awasthi from Dubai, frequently comes to Kolkata[ where we live]and provides input to parents having kids with Autism and that her next visit was due after about

What ? Autism ?? What is that?

Having gone round the world never heard what Autism was. But when it happened I took as something which will be set right with age. But her mother knew better. One day I overheard my daughter [ Roshnees mother]talking to her elder daughter that Roshnee had a problem and that she will not be able to play with her as she had

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6 months and that then she was in Lucknow. We got in touch with her and rushed to Lucknow with Roshnee. In the train she was up as usual till 1 AM and making all sort of sounds which forced me and my wife to take turn in standing with her in the train lobby. At our first meeting with Ms. Awasthi we were impressed that Roshnee sat with her and enjoyed sitting there and after a long time she spoke bubble while working with Smita. After 6 to 7 days intervention for one hour each day we did notice some subtle changes in her which after so many years are difficult to point out but at that time appeared huge. Ms. Smita told us many things like a.This technique is called Applied Behaviour Ananlysis [ABA in short]. b.We should try to keep the child as happy as possible. c.Smita flattered me by saying [I dont know how she got it] that I was a natural child lover and that I should play with her as much as possible. d.We should always be in control and not the child, which meant that if we say anything to the child to do, then child MUST do it and we shouldnt give up till child doethat, even if it meant making child do it hand-on-hand way.It looked all very well and pleasing. However, real eye opener was during our return journey to Kolkata. Roshnee was still up till 1 AM but she kept herself confined to her berth and her noise level [babbling] was sufficiently low so as not to disturb fellow passengers.We then knew that

ABA was the route that we will take. I joined many yahoo groups dealing with Autism, learnt from opinions/experience of many mothers, and attended all workshops on ABA held in Kolkata by Ms. Smita and others. Having our own NT (Neurotypical)children and a grandchild prior to Roshnee we were practical enough NOT to see everything with the glasses of Autism and have been lucky that this has paid off. We did not attribute every action of Roshnee to Autism or sensory issues and compared any new behavior with that of our NT children. Like most children with Autism, Roshnee was a picky eater. She would eat only 3 to 4 items and nothing more. But we knew this was the case with our NT children, whom we cajoled, forced, and made them eat other things too. We adopted same method with Roshnee against the advice of many parents on Yahoo groups and NOT accepting it as sensory issue. We will put a new item in Roshnees mouth and she will spit it out. We will again put it and she will spit it out. We will continue doing it forcing it till she will gulp [remember Smitas advice---we should be in control not the child!!]. The result is today Roshnee eats every thing we give to her, perhaps is convinced now that we will not give her poison. Over the years we had our short stints with GFSF diet, which was perhaps effective but almost impossible to follow strictly with our North Indian food habits. We also had our weak moments when

we changed her name on the advice of a numerologist, visited some temples, prayed to God but never let go of the ABA based intervention.We continued steadfastly with ABA without wavering and believed that Race against Autism is a marathon and not a sprint, meaning thereby that results will come but slowly. Another advice Smita had given later on that we should keep Roshnee as busy as possible. We made it our endeavour to follow it inspite of our growing age. But writing on this subject will mean another article.

Our motive has been to make Roshnee as much independent and skillful as possible so that her quality of life improves. We believe that Autism is for life but with proper intervention and training, life of a child with Autism need not be a burden on the caregiver. It can be turned into an asset and a caregiver will be happy to have her around. This is our goal we wish to achieve before we [her parents included] close our eyes.

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