Monday, 2 December 2013

Parents Rise To The Challenge

Parents Rise To The Challenge

What does a Mumbai architect have in common with a Kolkata educationist, and a writer in Dehradun? Not only do all of them have children with special needs, they've become champions of change. Nergish Sunavala meets three devoted caregivers-turned-campaigners.

Designing for the Differently-Abled

Parul Kumtha

"My son has taught me more about life than I will ever be able to teach him," says 48-year-old architect Parul Kumtha, whose son is cognitively impaired. Today, her architectural firm, Nature Nurture specializes in designing for the visually challenged, hearing impaired, cognitively challenged and wheelchair users.
In 1996, Kumtha's three-year-old son, Kabir, toppled out of the third-floor window of a daycare centre in Mumbai. The 40-foot fall resulted in multiple fractures, facial paralysis, burst ear drums and severe damage to his brain's language centre or temporal lobe. "He was in a coma for ten days and there was cerebral fluid coming out of his ears," recalls his mother. "He couldn't even hold his head up; he was worse off than a newborn."

For the next four years, Kumtha put her life and career on hold while nursing her son. She pulverized his food before injecting it into his feeding tube, changed his nappies and carried him from place to place until his fractures healed. She also found time to co-found Mumbai's Forum for Autism network — Kabir was never formally diagnosed but has always shown signs of being on the autism spectrum.

By the time Kabir regained the ability to walk and started attending school, architects had switched from using drawing boards and t-squares to computer programmes like Auto-CAD. "I felt like a dinosaur," recalls Kumtha. Eventually, however, Kumtha found the niche she was uniquely suited for — accessible design. Over the years, she has worked on projects to make St Xavier's College, the Reserve Bank of India and even Nasik city accessible.

Kumtha also started teaching a course on the subject at the Sir JJ College of Architecture. Keeping 21-year-old Kabir in mind while designing a space — he can be trained to recognize a universal symbol for a men's restroom, for instance, but not a King of Hearts — helps immensely. "It's not rocket science," Kumtha explains. "What is difficult is creating the mindset that all spaces need to be accessible."

Training Parents of Autistic Kids

Indrani Basu

In the midst of our phone conversation, Indrani Basu had to excuse herself and circle the festival Bhai Dooj on a calendar for her 20-year-old son, Koustav, who was diagnosed with autism at the age of four. When Koustav gets hyper about an upcoming event or treat — a bottle of coke, for instance — it calms him down to see it marked on a calendar. "It helps if I show it to him visually," explained his mother. "Schedules and calendars are like his prosthesis."

Basu, a former English teacher, learned this handy ploy during a course in autism for special educators conducted by Action for Autism in Delhi. In 2000, she moved to the capital with both her sons — the elder one, Amitava, also has Asperger Syndrome, a high-functioning form of autism — because there were no resources close by. "The course helped me understand my sons and how they viewed the world," she says.
After completing her stint in Delhi, Basu tried to work in Kolkata schools catering to both autistic individuals and the cognitively impaired but found them resistant to her methods. So in 2002, she founded Autism Society West Bengal to raise awareness about the disorder. A year later, she set up Dikshan, a school catering to individuals with autism. Initially, Dikshan had six students, today, it has 40 — ranging in age from three to twenty years.

At Autism Society West Bengal, "we train parents to give the intervention because we have found that to be most effective" says Basu. "Parents, who have trained with us, also become catalysts by starting programmes of their own. One parent has started a school in North Kolkata, and another is starting one in Howrah."

Creating a Happy Place for Special Kids

Jo Chopra

In 1989, Jo Chopra and her husband adopted two-week-old Moy Moy, a premature baby, who was abandoned in a Dehradun hospital. "I am an impulsive person by nature, says 55-year-old Chopra. "It just seemed like the right thing.

Despite having cerebral palsy, Moy Moy slowly learned to walk, talk, dress and feed herself. Then at the age of five, a degenerative disorder took hold and she began to regress rapidly. "Today, she has profound disabilities. She uses a wheelchair, eats through a tube and speaks only with her eyes, says Chopra.

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