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.