Times of India
2 April 2010
As told to Monideepa Sahu
On World Autism Awareness Day (April 2), the mother of an autistic child shares a page from the diary of her life filled with challenges and revelations
Aditya with mom Snigdha Kemkar
I’m Snigdha Kemkar, RJ, independent corporate soft skills trainer and professional anchor. Above all, mother of Aditya. My life changed forever after Aditya was born with autism.
Our mornings begin at 7 am. Aditya wakes up, enjoys breakfast, and is eager for school. He now sleeps normally but only after years of therapy. I shudder remembering Aditya as a hyperactive toddler, who slept barely an hour each day and wore himself out to nearly a skeleton.
As a mother, I sensed something amiss early on in his lack of eye contact and unresponsiveness. My husband, WG CDR Kuber Kemkar (retd) was then posted in a remote IAF base. I travelled 20 km daily for just one hour of therapy. I gave up my profession to be with him every single moment. We were shattered to learn that autism is a lifelong disorder with no known cure. We could have surrendered him to an almost vegetative existence like many others. Instead of despairing, we rallied behind him as a family. My husband sacrificed his career with the Indian Air Force to settle in Bangalore, with facilities for Aditya. My daughter Ankita began helping from an early age, and is now like a second mother. It’s a coincidence that Aditya’s birthday is on April 2, World Autism Awareness Day. It’s as though he is a beacon of hope.
– Off to school.He tries on his new shoes for a few minutes to get adjusted, and then wears his old ones for school today. He can manage his basic needs after years of effort, but shoelaces are still a challenge.The slightest changes in routine upset Aditya. We take care to introduce new things very slowly. Aditya took six years to adjust to spending a full day at Sunshine Autism Trust School. Though he hears, he never speaks despite intensive therapy, expressing himself clearly with only gestures. Dropping him off at school, I can do my work. I prefer to freelance, working only when Aditya is safe and happy in school, or with my husband or daughter. We cannot dream of leaving him unattended even for a single moment.
– I give my 200 per cent at work, but am particular about winding up in time to pick up Aditya from school.
– I’m stuck in a traffic jam. What if Aditya panics on not seeing me at the school gate? He might run off into the streets and… I shudder as I make it ten minutes late, and thank God to see Aditya restless, but safe. On the way home, we buy potatoes. Like many autistics, Aditya has obsessive compulsive disorder. He has gone through phases of kneading wheat flour and shredding newspapers. Now, he must peel mounds of potatoes. What will happen when my husband and I are no longer there for him? I grit my teeth. I will not let fear and resentment win.
– Autistics often have intelligent minds trapped by impaired responses. Aditya surprises me with a lovely mat he has woven at school. He shows flashes of stunning brilliance as he starts at the corner of a complex 200-piece jigsaw puzzle and rapidly fills it in like a film in fast–forward. Aditya loves roller–skating and cycling. But he now pedals so fast, I can no longer keep up. I need to stay within reach, afraid he will cycle off and never come back.
– My husband returns and takes Aditya out for a long walk. Meanwhile, I prepare for my weekend radio show, surrendering my soul to music. Life is never perfect for anyone. Why should I brood over what isn’t, when I can enjoy the peace and beauty of music and a loving family?
– It is time for Aditya to go to bed. After dinner, all of us are busy doing our own things, and Aditya too sits in a corner and enjoys his ‘me’ time. He is quiet, not restless anymore. When it is time to get into bed, he points at his wrist, indicating that he is sleepy. Sometimes, it might slip our minds, but he always reminds us. He has taught me a lot of patience and the value of empathy. Earlier, I would just go about my life not really thinking about others around me. Because of Aditya, I have learnt to have concern for others less privileged than me.
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