We saw Shubhangini tend to her daughter Laila’s day-to-day needs and eventually make her independent enough to come back and care for her mother. An everyday challenge – for Laila, who is wheelchair bound and has cerebral palsy and also Shubhangini to understand and meet her needs. The life of the Laila, completely depended on the bond Shubhangini created with her. But that is a storyline of Margarita with a Straw.
Like Shubhangini, there are many taking one day at a time, working on small goals.
One such compelling story is that of special educator Holga, whose son Nitin was born with multiple disabilities – mentally challenged, visually impaired, and hyper active along with signs of autism. Nitin, who is now 20, had it tough in his early years.
Learning with the child
“Back then there was no one to guide us. Nitin needed to be operated upon, and we had to go to Chennai which led to the loss of his vision. We didn’t have a choice, we were looking for his survival,” Holga recalls.
He survived and her challenges began right then. “He was a hyper active child,” shares Holga. With no centres available to provide therapy for his multiple limitations, both mother and child were in for a lifetime of hardships, when they decided to enrol themselves at Devnar Foundation for the Blind. “I used to sit with him, learn what he is learning and began to understand his limitations,” Holga tells us.
Her husband received a transfer order soon. Keeping in mind that children with disabilities should be taught in one language, she wrote to schools all over South India but was slapped with a similar response each time. “We are not equipped to take care of this level of disability.” She built the courage to go to Delhi, but had to return as langauge was a barrier.
The thought of enrolling her child in a regular school did not arise for the kind of attention he needed. Years later, she too works at Devnar Foundation as a special educator and spends most of her time, attending to her son and other children like him. The National Institute for Mentally Handicapped (NIMH) and LV Prasad Eye Institute came to her rescue, shares Holga.
Striving for independence
City-based homemaker Marie Varghese faced a similar predicament when her 17-year-old son Roshan was diagnosed with autism when he was just over 15 months old. Today, he runs a baking business with the help of his mother and sells them at www.allgodscreation.com.
Marie recalls going “doctor shopping” when Roshan was diagnosed in the late 90s. “Once we came to know of his condition, we started looking for therapists. I realised that the best thing to do is to educate myself and work with him,” recalls Marie, while admitting that back then she was keen on pushing him to be on par with ‘normal’ children. She enrolled him in a regular school.
“I had to sit with him. Eventually, the principal told me that he cannot continue because her teachers are not trained to handle his hyper activity. He was also speech-impaired. I decided at that point, he would be home schooled,” shares Marie. This, despite being told by therapists that it could affect his behaviour. “Children at that age tend to imitate and learn. I was told that by enrolling him in a special school, his behaviour is likely to worsen. But I had no choice. I decided at that moment that as a mother, I will give my best,” she explains.
With a revised lesson plan, focusing on making him independent, she got to the task. “Today, he is the most disciplined individual at home,” she tells us with pride. This, with a help from therapists at the NIMH and relatives who were familiar with Roshan’s condition.
Marie also observes that the situation is not as it used to be back then. “I have been fortunate to have people who could guide me. Today there are Facebook and Whatsapp groups where parents share their challenges and seek help.”
Among parents who are seeking help from people like Marie is Jahnavi who dropped out of her PhD after four years and returned to Hyderabad to take care of her three-year-old daughter, who is on the milder side of the autistic spectrum. More than established hospitals and trained therapists, it is knowledge of experienced parents that is helping her. “I don’t want to name the hospital, but they charged me `1200 for an assessment that was slightly over two minutes. I took a house close to the hospital thinking it would make it easier for me, but no,” she fumes. This was in the initial six months after she arrived in the city.
She then took it upon herself to take care of her child. “How do I monitor her? What are the signs I should look for? These are questions I put across and the reply I got was, You are the mother, you have to create a bond,” shares Jahnavi, who agrees that she is the one going to make a difference in her daughter’s life, but what she is seeking, is guidance.
She eventually found reliable people and has been working on their suggestions for the past one year. “There is a Facebook page called ‘Autism Parents Hub’ , besides other sources on the web” she shares.
Help in time
For Jahnavi, Marie and Holga, it was relatively easy when compared to Ravinder, a middle-aged driver in Hyderabad. His son was diagnosed with autism when he was three years old. With an income just enough to meet basic needs, initial tests and medication took a toll on his financial situation. After several counselling sessions, at NIMH and one-on-one interactions with trainers at Aarambh Centre for Autism and Slow Learners, the child has become responsive. “My wife accompanies my son to school and watches him as he needs attention all the time. The NGO has been kind not to charge us fees,” says Ravinder.
(This story is the second in the two-part series on Redefining ability: Promoting Human Rights of Women with Disabilties for Asmita Media Projects 2015, Asmita Resource Centre for Women, Hyderabad )