My name is Shishir Kant Misra. I did my Mechanical Engineering from IIT Kharagpur in 1965. I now live in Kolkata. I had a reasonably successful carrier, which has taken me round the world (literally). Nearer to my retirement age I started my business on turbines. My daughter and we were living near to each other. My daughter was a doctor and married to a doctor . She had a daughter who was good in her studies. My son too having done his Engineering had settled in England.
Life was moving on generally predictable lines. When my daughter had a second child, Roshnee, a daughter we were happy and ecstatic.
I, having been brought up in Lucknow in a rather big joint family with 7/8 younger cousins, by nature am a child lover.
Since birth I noticed there was something amiss with Roshnee. She was beautiful, happy child and yet something was there which I had not seen in any of my younger cousins or my own children nor even in my first granddaughter, Roshnee’s elder sister.
I used to say that perhaps some wires in the brain were not joined yet, but will do so in future. My daughter, Roshnee’s mother, a doctor herself, too felt something different couldn’t put her finger on what it was. I used to take Roshnee (1 year old) out and walk with her on the pavement and talk to her. She knew words and recognised leaves, trees, crow and could speak too on her own. At about 15/16 months, she was taken to the zoo. There she saw Cranes, raised her arms overhead and said “crow itte bade bade.” (Crows are so so big).
We did start observing some unexplained behaviours, her astonishing strength considering her age, her ability to walk for hours without getting tired or asking to be lifted up. And then some one told she had Autism.
Autism? What is that? Having gone round the world I hadn’t heard the word, her parents doctors themselves had not heard the word. And then by the time Roshnee was 2/2.5 years her Autism manifested itself. She gradually stopped speaking and in a month or so became non verbal.
Anyway acceptance came thick and fast, one can say almost overnight.
I set upon studying about Autism. That time (2002) no WA, no fb, not many ways to learn… However I took some far reaching decisions.
1. I had earned enough to take my wife and me through our old age.
2. Roshnee needed 24X7 care which was not possible for her parents to provide, they themselves being on the beginning of her their career. So from nuclear family we took reverse gear and became a joint family, with undeclared understanding that while my wife, still young in our early 60s, will take care of Roshnee 24X7, her parents will take care of their elder daughter and build up on their own careers.
3. I stopped my business and started learning more and more about Autism.
Since acceptance came thick and fast, almost overnight, we started wearing her Autism on our sleeves. Any one we met anywhereeven for couple of minutes and if Roshnee had been with me, I first pointed out that Roshnee had Autism. Almost always up I saw jaws dropping but then a small talk followed and at least that person became aware or at least knew that there was something like Autism. Gradually every one in our family, extended families knew that Roshnee had Autism or at least that she has some issues/problems. We never felt embarrassed by her odd looking behaviours like hand flapping, talking to self, making strange noises loudly. We took her to movies, she made noises, we were fine and I was more than surprised when during interval I tried to explain to those people sitting near us her issues, they were fine with it.
I took her to park every morning and gradually all regular walkers became aware of her issues and so in the process entire huge park became her comfort zone. When she outpaced me and went ahead on the walking track, someone coming from the opposite direction would tell me that “she has gone that side”. Once she just walked out of the gate of the park and went looking for our car, a gentleman came to me telling me where she was standing. I learnt later that he had kept another walker there to ensure that she doesn’t run away here and there.
Her all important milestones were generally in time including her menstruation cycles. Of course language is yet to develop properly.
We observed her strengths, like interest in painting, and singing and gave her as much exposure as possible. She is no stage fright, rather loves any opportunity to hold the Mike and sing or participate in stage programs with all makeup in place.
We never thought to “cure” her Autism. Rather our focus has been on making her independent in all ADLs. Today she doesn’t need any help in her day to day activities rather she is a big help in our daily activities including washing family laundry daily, taking them to terrace for hanging on clothesline and later bring them back, beside small things like Roshnee do this, bring me that etc. And she does all that like any other typical child and happily.
Society and Autism family has given us much and now I am sharing my life’s journey and my experiences with newer parents via few Autism related group. I occasionally get calls from strangers, mostly mothers from as far as China, UK, US besides nearby Bangladesh or different cities of India. Many times mothers have been looking for the release of their pent up frustration and needed a shoulder to cry. They trusted a father figure like me, cried unhesitatingly for a long time and then felt a bit relaxed, confident that their anxiety will not be made fun of.
Perhaps most rewarding moment had come about 10 years ago when a mother told me that she was persuaded from committing suicide after talking to me. Today she is a very happy mother.
About 10 years or so back I and some of the younger parents started realising that very soon we all will be staring at the haunting question “What after us?” And there was no answer. Govt. was/is totally unconcerned since we parents don’t make a huge vote bank.
And so idea of Assisted living for our children to be looked after for their entire life with dignity and safety after parents have moved on took shape. Some brilliant and daring young parents, even during peak of Corona continued to look for suitable land.
We parents pooled our resources and purchased about 10Acre land near Shantiniketan and started Anand Ashram an assisted living facility for persons with Autism. We have included a very decent living accomodation for those parents who may like to live their retired life near but separately from their Child with Autism. Construction is progressing at a fast pace. The facility will have a special school, a vocational unit, a bakery, a gym, walking/jogging track, swimming pool.
A resident will have 24X7 caregiver throughout his/her life.