We can never underestimate the motivation of parents. Often times they are the ones that spearhead movements in their own communities.
Before Sangeeta Doloi had her first child, she had a relatively simple life. She grew up in Tinsukia, Assam and lived with her parents. She got married at 24 and moved to Kaziranga, where her husband worked. After two years of being married, she had a baby boy. The delivery was normal and the boy seemed healthy.
When he was a few months old her mother asked her not to wear her large anklets because the jingling sound would wake up the sleeping baby. But Sangeeta noticed that the baby always slept through it, and she began to suspect that something could be wrong but she wasn’t sure. One afternoon, her son and her friend’s baby were both asleep in the same room and a large fruit from a tree outside fell on the tin roof. The clanging sound woke the friend’s baby up immediately and she began to cry. Sangeeta’s son, however, slept through it. Again.
She was now sure that something was wrong. She travelled to Guwahati to have her son examined and the doctors confirmed that he had hearing impairment. Her son was two years old now. She heard that a cochlear implant was the best way forward. She then travelled to Delhi and met with doctors who in turn told her that her child was too young for an implant. She was advised to use a hearing-aid instead. But that’s it. Nothing else was prescribed or advised. She wasn’t told about the nuances of how a hearing aid works and what she needed to do to optimize the effect of it for her child. Sangeeta then put her son in a Ferlango School in Shillong but quickly realised he wasn’t learning anything. The frustration of not being able to communicate with her son grew. She felt she had to take charge of things.
She then moved to Guwahati and set up her own beauty parlour as a parallel source of income to support her son. It was here that she first heard about VAANI. She learned that there were many means of communication and not just speech. She learned that just sticking a hearing aid into her son’s ear wasn’t just enough, there needed to be speech therapy. She learned that her child could learn a combination of techniques and be able to communicate and express himself clearly. She also interacted with other parents of deaf children and realised she wasn’t alone in this struggle. There were many like her from various walks of life across all economic levels. The problems remained the same, so did the solutions.
During one visit to an event held for parents of children with disabilities, she saw that there were Parent Groups for most other disabilities but not for Deafness. This is where she found her calling. She knew the value of sharing experiences with people who have similar hurdles to overcome. She decided to set up a Parents Group for parents with deaf children. She registered a trust and began operations out of her own house. Bootstrapped, as they would call it in the startup world. Her husband poured in all the support he could and they eventually moved to a larger, proper space and expanded their scope to Early Detection and Intervention, and set up their own NGO. She called her centre, Dikshruti.
She has been running the centre for four years now and has become our partner organisation. They have reached over 40 parents of deaf children and have been successfully working towards their education and skill development. They provide parent counselling, motivation, early intervention including stimulation support, remedial educational support and skill building of parents free of cost.
On the 14th of January, 2016, Sangeeta was invited to Delhi and received a Rashtriya Swayamsiddh Samman Award hosted by the Jindal Steel and Power Foundation! This really is the pinnacle of our work. We are very proud that the efforts of one of our own have been recognized. It reinforces our belief that when parents take charge and show great initiative, much greater change can take place.