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for the Welfare of Persons with Autism, Cerebral Palsy,
Mental Retardation & Multiple Disabilities
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Our Journey towards Inclusion
Usually when your child is diagnosed with such a severe intellectual disability such as Autism, your world does come crashing down….

My son Aranya was2.5 years old when Dr.Udani at Hinduja Hospital in Mumbai confirmed my worst fears …that my son was indeed autistic.

A diagnosis such as Autism in your first born changes everything…

A seemingly happy flawless marriage suddenly becomes ridden with an underlying tension.

Finances need to be re-worked as therapiesfor your child even way back in 2000 cost as much as Rs. 400/- a session, not to mention conveyance costs in taking your child from one therapist to the other.

The biggest challenge however is the struggle of finding a school for your child, of creating social acceptance for your child within family and friends, dealing with loneliness and social seclusion because your child growing slowly …has sensory needs that make him stand out and alone among your friend’s children as also other children in the family.

The easy way out for a family with autism now is to become a recluse…and stay hidden.As other children prepare for their nursery admissions in school, my child gets dressed only to go from one therapist to the other and maybe a psychologist.

Other children have regular things like badminton, music and computer classes and as other mothers talk about their children's sports prizes andquiz prizes and geekiness with latest technology…your heart wallows in pain…as you pass by in your car …looking longingly at St Columbus School where you hada childhood dream that if you hadason he would go there….

Anyway life goes on for me and for the first six to seven years of Aranya’s autism I drowned myself in making a Corporate career , as my mother-in- law left her household in Kolkata to devote herself to my son’s upbringing.

Till I get a letter from Aranya’s mainstream school with a Special Section, letting me know quite clearly that asfaras his foray into mainstream education is concerned…the buck more or less stops here…attached with it is a list of “Special Schools” he can attend.

I am outraged as I ask myself, “what part of my tax to the government does not go to making of more schools in the city ??” and what part of Aranya’s citizenship in this country denies him the Right to education in one out of over 5000 private and public schools in Delhi and NCR??

I put in my resignation the next day, much to the chagrin of my boss and several mails from my colleagues citing the foolishness of such a decision.

It takes me four months of intense hard work to find like -minded parents passionate about inclusion and another parent who knew Shri JagdishTytler for us to get some space in JD TytlerSchool,Munirkaand our NGO PORDAC(Protection of the Rights of Differently Abled Children) is now finally on solid ground

Life seemed OK again as my heart filled with pride watching all of my twenty two kids wear school uniforms and attend school assembly, as the corridors of the school resonated with “SareJahan Se Acha” andsuddenly my faith in my country and its constitution is restored as I see our kids attend selective classes and non-academic periods with regular children.

However, just as our student strength reached 30 children, theschool management decided that they wanted the 800 square feet space that they had given us on a fee sharing basis back!!!

Year 2013 starts on an unnerving note, with our NGO PORDAC (Protection of the Rights of Differently Abled Children).

In the summer months of May and June, armed with a list of over 250 government and MCD schools in and around Munirka(A quick survey from our side indicated that 4 class rooms in Sector 4 R.K. Puram Government school lied vacant),with an appeal to provide us two rooms in any one of those schools.

After months of effort and mail writing a registered post from the Directorate of Education informed me that there is “no policy” of giving class rooms to private NGOs to run resource rooms and facilitating Inclusive/Integrative education with the help of Special Educators in any government run schools.

We had to vacate JD Tytler School in the month of October. I hadto get into action immediately and rented a space at Chittaranjan (CR) Park and shifted all my children immediately. Changed their uniforms overnight!

The new centre at CR Park is now called Parivartan (under PORDAC NGO).

The day we shifted we got a generous offer from Lalit Mahajan SVM School in VasantVihar to initiate an Inclusive Wing in their VasantVihar Branch.

This was a new beginning and we went headlong into the development of the Inclusive Wingtaking on partners with extensive experience such as Dr AmrapaliLahiri and Ms.Mousumi Biswas.

The new wing at Lalit Mahajan School called ‘Vidyapeeth’ where we are accepting admissions from 4-10 year olds.

The school already boasts of 10 differently abled children in the New Wing.

Parivartan, now runs as an Academic Institute for Children. Here, the differently abled children study for a few years before getting enrolled in Lalit Mahajan School.

Children above the age of 11plus are equipped with Vocational skills such as Baking,Computers,Pottery etc.

Inclusion as a concept for differently abled children in regular schools is still light years away from reality.

We just hope that in PORDAC we have started the journey and step by step we would succeed in creating larger awareness on Inclusion as we believe this is the only way of creating awareness,acceptance,empathy for our children among regular children …and we will therefore be able to create more long term impact in society towards the acceptance of Differently Abled Individuals.

New Delhi


The year was 1986 - a family had been through numerous hardships in the last 6 years. Of the different crises, two earned top positions. There was the loss of a wife/ mother after she had lain in a total brain damage induced "vegetative" state for four years. And then there was this beautiful fourth child. Born with sparkling black eyes and a thick mop of curly hair, really a calendar baby, Runi was a puzzle that none of us could understand. Sleepless nights that went way beyond the colicky state that many infants endure, unusually picky eating, no language just sounds, obsession with objects, refusal to be hugged and last but not least, the meltdowns. Oh the meltdowns. Hours and hours of head banging and crying, biting and pinching herself and any others that came in the way, destroying objects that she could reach, till she was exhausted and could cry no more. When the relentless screaming had ended and Runi could hear us, two songs: Help me make it through the night and More than I can say would finally bring all of us some respite from the exhausting emotional outbursts.

A well-meaning relative arrived from overseas and was shocked that we hadn't sought intervention for Runi. (Intervention? We thought that was the term for the act of breaking up a quarrel or argument!) A few visits to a special school nearby, hours of filling forms and answering questions, and we came back home armed with books to read about a new word we had learnt: AUTISM.

A single father and four children - Runi the youngest aged 6, and the rest of us 13, 14 and 15. And now add Autism to the puzzle. It was an interesting life to say the least. My most significant and happy memory of this time is this: one night when all of us were talking and getting ready to call it a day, we heard this melodious voice singing : Help Me Make it Through the Night! It was Runi. She could form words. She could say complex things like: Yesterday is dead and gone; and tomorrow's out of sight; it's so sad to be alone, so help me make it through the night.

The floodgates of words and language had finally opened, and we worked instinctively with her expression after that. Our grandfather, for example, wrote songs to help Runi with her activities of daily living:

Runi hated drinking milk and would take hours over one cup, so his song ( sung to the tune of "Oh my Darling, Clementine)for her was:

"Runi Jacob, Mary Jacob, Mariam Jacob doodh piyo
Dono haath mein pyala pakdo, Jaldi jaldi doodh piyo."

And she would gulp it down with a grin!

Language certainly opened a window into her world, the silent fortress she had lived in for so many years, but it was uphill. It was never clear to us what would work with Runi - letting her sit for hours on end rocking back and forth while she meticulously destroyed packets, cassette covers, pens - actually pretty much anything that could be taken apart? Being strict with her and forcing her to join in wherever we went, doing whatever we did? Insisting that she eat everything on her plate even if it meant sitting on her and stuffing food down her throat. Singing the WHOLE night so that she could sleep? Just holding her while she screamed and cried in obvious pain from something- though we had no idea what! Yes we did all of this. We had no idea of the sensory overload that she faced daily. The only time Runi had any respite from this well-meaning ignorance was when she visited her favourite Special Educator in Jorbagh, Delhi. Signed up for lessons twice a week, Runi savoured the moments she had with this particular individual. She was accepted unconditionally there. And she learnt a great deal too. That was where she began reading, writing, categorizing, doing maths, learning shapes and colours. And what potential she had!!

People ask me what it was like growing up with someone like Runi- intelligent, obsessive, strong willed, and Autistic.

Life has been a roller coaster ride!

Runi has taught me, and indeed all of us, so much. Yes there have been numerous tough moments (remember, roller coaster!), but the joy that comes when you see a light at the end of the tunnel is immeasurable. And believe me - there have been, and continue to be many tunnels, and lights! Two of us - Runi's siblings, work with people with special needs. Because we know the joy of overcoming seemingly impossible hurdles. We savour the moments when parents realize that their child is capable of feats their wildest dreams had not prepared them for.

It is impossible to sum up Runi and us in a single blog entry. But we'll save the rest for another day.

Aparna Das

Aparna Das is a sibling of "Runi", and founder of "Arunima" a residential set up for young/adult people with Autism in Dehradoon and Mussorie.

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  Autism Spectrum Disorders or ASD is commonly called Autism Neuro- typical: A term used for people who do not have Autism or ASD  
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