Many parents of children with disabilities, feel deep anxiety and fear the lack of opportunities available for their children in a world apathetic towards them. Parents associated with Save The Children’s Project Dhvani have had similar struggles… From being thrown into a life that seems like a losing battle, discovering details of their child’s disability, equipping themselves with knowledge and tools to help their child, seeking advice and guidance for the way forward, learning to focus on their child’s abilities rather than disabilities and nurturing their child to deal with the outside world.
\n\n\n\nHere are stories of struggles and strength, shared by 4 parents of children with hearing impairment, that emphasise the need for early intervention and a change of culture towards differently abled children in our society.
\n\n\n\n#ThisAbilityMatters is a co-created campaign with Save The Children India that aims to push the discourse on the need for self-reliance and independence of India’s disabled children.
\n\n\n\nRAHUL GUPTA
\n\n\n\nMy\ndaughter Komal was born in 2015 Today, she is 4.5 years old. We realized that\nKomal seemed to have an auditory issue, when she was 2 years old, as she never\nresponded to any of our shout outs. We had a niggling feeling because children\nher age had already started speaking. We heard about the BERA test for the\nfirst time from the doctor, when we took Komal for a routine check-up. We\nimmediately took the tests, and the results we received were bleak, indicating\nthat Komal suffered from severe hearing loss (over 60%). Regardless of our\nlimited sources, we consulted an ENT doctor, and after conducting an MRI and CT\nscans, she confirmed the status of Komal’s condition. We were shattered, but\ndid not lose hope.
\n\n\n\nThat\nwas when we heard about the Dhvani program at Save The Children India, and\ndecided to try our luck here. After the initial diagnosis, Komal was fitted\nwith a Cochlear Implant. It took her a while to adjust, but Komal, always being\na happy child, bounced back in no time, and is now like any other happy,\ncarefree child of her age. As parents, we always want the best for our\nchildren. Initially, we were terrified at the thought of Komal being side-lined\nowing to her auditory disability. With support and guidance from the teachers\nat Dhvani, we felt reassured, and changed our perspective towards our child being\ndifferently abled.
\n\n\n\nMINAL SHAH
\n\n\n\nOur\nson Raj is 5 years old. Raj was always a very happy and healthy baby, and we\nnever suspected what was in store for us. At the age of 3, when Raj was down\nwith a bad bout of fever, we had to take him to an ENT, and while there, we\nwere shocked to be told that our little son suffered from congenital auditory\nproblems, with over 50% hearing loss in both ears. We were devastated! To add\ninsult to injury, we were short on funds for his treatment and the adequate\nknowledge on the best way forward. Days turned into months, until we heard\nabout Project Dhvani at Save The Children India, from acquaintances at the ENT\nclinic.
\n\n\n\nExcited\nat the prospect of providing a fresh lease of life to Raj, we took him to the\nDhvani centre. He underwent a cochlear implant procedure, and since then, has\nnot stopped smiling. We are forever grateful for the guidance and support that\nwe received at Dhvani, about the cochlear implant process. The teachers at\nDhvani were extremely patient with my child and taught him well and prepared\nhim for an equal footing in a regular school. Raj is now a very active child,\nwith a keen interest in sports and arts. We as parents have made sure that we\ntreat Raj like any other child, not letting him feel ‘different’ from the rest\nof the children around him.
\n\n\n\nNIRMAL NARWILKAR
\n\n\n\nMy son Pratham, was\n3 years old and he wasn’t speaking at all. We got concerned and spoke to our\npediatrician. He recommended the BERA test for Pratham, which revealed that he\nhad hearing impairment. We visited multiple hospitals in the hope that the\nresults would change, but much to our dismay the results were the same\neverywhere. The doctors directed us towards a cochlear implant that would help\nour child hear, and also recommended Project Dhvani that would help us through\nthe process and assist Pratham in hearing and speaking.
\n\n\n\n1 year later, Pratham\nwas fitted with a cochlear implant. Post-operation Pratham attended the verbal\nauditory sessions at Dhvani for two years, where he picked up speaking and\nhearing during and experts guided us to a special school in Byculla. Excelling\nin school, Pratham was moved to a regular school shortly after.
\n\n\n\nToday, our confident\nand popular (amongst his friends) 10-year-old, loves outdoor games and dancing,\nwants to grow up and start his own business, and is as normal as any other\nchild. We have immense gratitude for the teachers and staff at Project Dhvani\nwho made our journey comfortable and who helped Pratham reach his optimum to\nget into a good school, and hand-held us through altering our misconceptions on\nhearing impairment.
\n\n\n\nRASIKA PATEL
\n\n\n\nRashmi is our first\nchild. When she was a mere 2.5 years old, through various tests, we learnt\nabout her hearing impairment. We were shattered on learning this initially, but\nafter a journey of 1.5 years, our story has a different ending.
\n\n\n\nProject Dhvani and\nits experts had a significant role in counselling and guiding us through this\ndifficult journey. We had no idea how to deal with this situation, leave alone understand\nabout speech therapy and the other remedial steps that needs to be taken for a\nchild with hearing impairment. The CT and MRI scans revealed that Rashmi has Incomplete\nPartition Type I. The doctors tried a hearing aid device for about 3-4 months\nto see if Rashmi recovers, but the results were not encouraging. Rashmi did not\nimprove on the speech and hearing front either. Then she underwent the cochlear\nimplant surgery and the implant was activated 10 days after the surgery. She\nimmediately started to respond to the sounds and noises around her.
\n\n\n\nAfter the implant\nand the sessions Rashmi slowly started to identify with our voices, she learnt\nshort words like mama, papa, dada, paani, etc. It’s been one year since then\nand she has started communicating in 2-3 words. Nowadays, Rashmi is slowly\npicking up her writing skills too. She has an inquisitive nature just like\nother children, and loves to dance to different music beats.
\n\n\n\nRashmi was adamant\nand stubborn before the operation. Her attention span was short and we had to\ntake her out every twenty minutes to stop her from crying. She couldn’t\nunderstand much of what was happening around. In fact, we also couldn’t\nunderstand clearly what she wanted. But after the implant, the subsequent\ntherapy sessions and with our counselling we have seen remarkable changes. Now,\nwe understand each other better and she listens to what we say. She asks for\nwater and food whenever she’s thirsty and hungry too.
\n\n\n\nWe delayed Rashmi’s\ndiagnosis thinking that everything was normal. We were hoping she’d pick up\ntalking soon. But I realize that we were wrong and we were late. We came to\nDhvani when Rashmi was 2.5 years old, but we should have brought her much\nearlier. Her progress would have been faster than what it is now. I feel that\nevery parent should get the hearing test done at the earliest so that any\nabnormality is addressed at the earliest.
\n
