Monthly Archives: December 2019

#ThisAbilityMatters – On Raising A Child With Hearing Impairment

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.

Here 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.

#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.

RAHUL GUPTA

My daughter Komal was born in 2015 Today, she is 4.5 years old. We realized that Komal seemed to have an auditory issue, when she was 2 years old, as she never responded to any of our shout outs. We had a niggling feeling because children her age had already started speaking. We heard about the BERA test for the first time from the doctor, when we took Komal for a routine check-up. We immediately took the tests, and the results we received were bleak, indicating that Komal suffered from severe hearing loss (over 60%). Regardless of our limited sources, we consulted an ENT doctor, and after conducting an MRI and CT scans, she confirmed the status of Komal’s condition. We were shattered, but did not lose hope.

That was when we heard about the Dhvani program at Save The Children India, and decided to try our luck here. After the initial diagnosis, Komal was fitted with a Cochlear Implant. It took her a while to adjust, but Komal, always being a happy child, bounced back in no time, and is now like any other happy, carefree child of her age. As parents, we always want the best for our children. Initially, we were terrified at the thought of Komal being side-lined owing to her auditory disability. With support and guidance from the teachers at Dhvani, we felt reassured, and changed our perspective towards our child being differently abled.

MINAL SHAH

Our son Raj is 5 years old. Raj was always a very happy and healthy baby, and we never suspected what was in store for us. At the age of 3, when Raj was down with a bad bout of fever, we had to take him to an ENT, and while there, we were shocked to be told that our little son suffered from congenital auditory problems, with over 50% hearing loss in both ears. We were devastated! To add insult to injury, we were short on funds for his treatment and the adequate knowledge on the best way forward. Days turned into months, until we heard about Project Dhvani at Save The Children India, from acquaintances at the ENT clinic.

Excited at the prospect of providing a fresh lease of life to Raj, we took him to the Dhvani centre. He underwent a cochlear implant procedure, and since then, has not stopped smiling. We are forever grateful for the guidance and support that we received at Dhvani, about the cochlear implant process. The teachers at Dhvani were extremely patient with my child and taught him well and prepared him for an equal footing in a regular school. Raj is now a very active child, with a keen interest in sports and arts. We as parents have made sure that we treat Raj like any other child, not letting him feel ‘different’ from the rest of the children around him.

NIRMAL NARWILKAR

My son Pratham, was 3 years old and he wasn’t speaking at all. We got concerned and spoke to our pediatrician. He recommended the BERA test for Pratham, which revealed that he had hearing impairment. We visited multiple hospitals in the hope that the results would change, but much to our dismay the results were the same everywhere. The doctors directed us towards a cochlear implant that would help our child hear, and also recommended Project Dhvani that would help us through the process and assist Pratham in hearing and speaking.

1 year later, Pratham was fitted with a cochlear implant. Post-operation Pratham attended the verbal auditory sessions at Dhvani for two years, where he picked up speaking and hearing during and experts guided us to a special school in Byculla. Excelling in school, Pratham was moved to a regular school shortly after.

Today, our confident and popular (amongst his friends) 10-year-old, loves outdoor games and dancing, wants to grow up and start his own business, and is as normal as any other child. We have immense gratitude for the teachers and staff at Project Dhvani who made our journey comfortable and who helped Pratham reach his optimum to get into a good school, and hand-held us through altering our misconceptions on hearing impairment.

RASIKA PATEL

Rashmi is our first child. When she was a mere 2.5 years old, through various tests, we learnt about her hearing impairment. We were shattered on learning this initially, but after a journey of 1.5 years, our story has a different ending.

Project Dhvani and its experts had a significant role in counselling and guiding us through this difficult journey. We had no idea how to deal with this situation, leave alone understand about speech therapy and the other remedial steps that needs to be taken for a child with hearing impairment. The CT and MRI scans revealed that Rashmi has Incomplete Partition Type I. The doctors tried a hearing aid device for about 3-4 months to see if Rashmi recovers, but the results were not encouraging. Rashmi did not improve on the speech and hearing front either. Then she underwent the cochlear implant surgery and the implant was activated 10 days after the surgery. She immediately started to respond to the sounds and noises around her.

After the implant and the sessions Rashmi slowly started to identify with our voices, she learnt short words like mama, papa, dada, paani, etc. It’s been one year since then and she has started communicating in 2-3 words. Nowadays, Rashmi is slowly picking up her writing skills too. She has an inquisitive nature just like other children, and loves to dance to different music beats.

Rashmi was adamant and stubborn before the operation. Her attention span was short and we had to take her out every twenty minutes to stop her from crying. She couldn’t understand much of what was happening around. In fact, we also couldn’t understand clearly what she wanted. But after the implant, the subsequent therapy sessions and with our counselling we have seen remarkable changes. Now, we understand each other better and she listens to what we say. She asks for water and food whenever she’s thirsty and hungry too.

We delayed Rashmi’s diagnosis thinking that everything was normal. We were hoping she’d pick up talking soon. But I realize that we were wrong and we were late. We came to Dhvani when Rashmi was 2.5 years old, but we should have brought her much earlier. Her progress would have been faster than what it is now. I feel that every parent should get the hearing test done at the earliest so that any abnormality is addressed at the earliest.

#ThisAbilityMatters – Their Disability? Or Mine?

#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.

The first day I walked into Save The Children India in BKC, Mumbai, I wondered what it would be like to be on the same campus as a school for children with disability. I’d never worked with people with disabilities before, and I had a few kindly thoughts in my head regarding the special school; thoughts that over the past four months have rearranged themselves to form a much more realistic narrative about a childhood in which disability plays a role.

  • Children with hearing impairments will be quiet, I thought.

But they’re not! They use sounds – laughter, annoyance, sorrow – and signs. So the school is full of a different kind of sound. They stand around in the corridors during recess pulling each other’s legs, gossiping about each other or their teachers, playing games. Before school they play, organize small games for the younger children and sometimes slump down half asleep – clearly the day is going to be spent drowsing in class for some! Let’s be honest we’ve all had those days and some of us still do!

  • Children with disability are kind to each other.

Hah! They’re children! Sometimes they’re kind to each other. Sometimes they shove each other. Sometimes there’s bullying.

One time, a child who also has an intellectual disability simply stopped on the stairs while going up to class after assembly. The children behind him waited. And waited. Chatted with each other. Then the child just behind him gave him a shove – go on! This child simply became even more still on the stairs. Refusing to move. There was a commotion further down the line with shoving and pushing and somewhat rude comments.

In a minute another child from the back of the line came forward and just moved the line around the child who was still on the stairs.

The teacher soon arrived and allowed the child time to decide what he wanted to do.

Another time I found two adolescent girls in a vehement discussion – clearly annoyed with each other. There was some shoving involved. Other children stepped in and broke it up.

Moral of the story – as with all groups of children, here too there’s all kinds of childhood behaviours. To expect otherwise is to reduce these children to their disability and deny them their right to being children.

  • Parents of children with disability struggle to cope with them.

Yes, they do. But again that’s only one part of the narrative. Parents invest in small and beautiful ways in their children – spending a whole school day with the younger ones for instance, learning how to enable them to participate in a world of speech and language through an Aural Oral Communication Programme. Or taking the older ones to the local hairdresser to have their hair streaked. Or braiding their daughter’s hair carefully and elaborately on a special occasion. And yes, they often comment on the challenge they face especially to have their child socialize in family and neighbourhood gatherings. But more than that, they enjoy their children; play with them; scold them; cuddle them. Why on earth would I expect it to be any different!

  • Children with disability are natural artists.

You know what – many of them are as much artists as I am. And that’s not saying much at all! No. Those with disabilities are not ‘naturally’ given to ‘alternative occupations’. Many of them are very interested in Maths, in languages or science. Many have academic aspirations.  Some are really good at drawing. Others are simply trying to find their interest and talent the same as I was, at that age.

  • Children with disability need kindness.

Yes. They do. As do all children. But they also need stimulation – games, music, competition, science exhibitions, maths kits….the same kind of holistic focus that we’re arguing is necessary in mainstream schooling. Part of our challenge is that we’re simply not investing enough in their intellectual growth – they’re curious and wanting to learn more. We need to step up.

My main takeaway from my own experience and observation is this – that even the most well-meaning among us tends to be reductive about children who have disability. The child becomes the ‘deaf child’, the ‘slow child’, and sometimes even the ‘thick child’. There is fear in engaging with them as they approach puberty and develop sexual preferences – as though it is distasteful for them to have sexual urges or fantasies as they grow through adolescence.  And there is a reluctance to scold, and a cringing when we see someone else scold, a child with disability.

Why?

I’m teaching myself to see beyond the hearing impairment and the intellectual disability. To respect each child’s individuality. To engage in conversation. To ask questions. To join them in play sessions. And to confess that I can’t draw to save my life and watch them confess as well, before we turn to admire the work of their drawing teacher.

#ThisAbilityMatters – Experts Speak On Building An Inclusive World For India’s Children

Children with disabilities are missing from mainstream discussions on education and employment, climate change and conflict, elections and evolving technology, sexual rights and sustainable development goals. How then do we expect Inclusive India to become a reality?

Working with children with disabilities, leaders of reputed organizations, take a deeper look at how we can address the gaps and make India truly inclusive for it’s children.

#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.

JAIVAKEEL FOUNDATION

We need to build a world where children are defined by their abilities and not their disabilities.”- Archana Chandra, CEO, Jaivakeel Foundation

UMMEED CHILD DEVELOPMENT CENTER

“A child is much more than his/her disability” – Shamin Mehrotra, Director – School Outreach Services & Mental Health Therapist, Ummeed Child Development Center

SAVE THE CHILDREN INDIA

“We need to remove all the barriers that are limiting equitable participation of children with disabilities.” –  Farida Bagasrawala, Director, Special Care Centre, Save The Children India.

#ThisAbilityMatters – “One Day, I Will Become A Big Guy,” Proclaims Amir.

Q. What is your name, age, where do you live?

A. I am Amir, a 17-year-old studying in class 10. I live in Santacruz.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. I live with my four brothers and one sister and my mother and father. I am the youngest of all and the most loved. My best friend is Azam because we both study and draw together.

Q. What do you like doing in your free time?

A. I love playing cricket, being with my friends and roaming around with them especially in Andheri and Bandra.

Q. What are your hobbies?

A. I love playing cricket, being with my friends and roaming around especially in Andheri and Bandra.

Q. How do you come to school? Do you like coming here? Tell us what you like the most?

A.I stay in Santacruz so I first take the train till Bandra, get off the train and take a bus to reach Bandra Kurla Complex. I like coming to school because I get to play carom and cricket at school.

Q. What do you come here and do? Which is your favourite/least favourite subject?

A. We first have the prayer in school, then we are served breakfast after which we study and play. Any sports activity is my most favourite thing to do. I love playing carom and cricket in school as it is my favourite thing.

Q. Tell us your favourite subject.

A. Math and History are two of my favourite subjects.

I will go to college, learn English and one day, I will become a big guy. I shall work in a mall and I also plan to go outside of India. I will go to Saudi Arabia.

Q. When do you feel Happy? Sad? Scared? Angry?

A. I feel sad when girls do not talk to me! From all the girlfriends that I have, Muskan is my favourite friend. She is beautiful and so good at drawing!

Q. India is an independent country. Did you know that? What does that mean?

A. Yes! That means that no one is ruling us and that we are all free now.

Q. What does freedom mean to you?

A. I feel free when I am on my own and when I am with my friends as there are no restrictions.

Q. Tell us what you love, what inspires you? Or Who inspires you? Why?

A. I love Virat Kholi because he is the best! I did not feel sad when India lost the World Cup, because it is a game.

Q. If you had given a superpower, what would you like to do/change about your life?

A. I would become Shah Rukh Khan for a day.

#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.

#ThisAbilityMatters – “I Want To Become A Doctor When I Grow Up,” Asserts Humza.

Q. What is your name, age? Where do you live?

A.  I am Hamza, I am 11 years old and live in Dharavi.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. I have two sisters and my parents in my house. Mehak, Palak and Heena are my best friends as we are always together! 

Q. What do you like doing in your free time?

A. I love to dance

Q. How do you come to the centre? Do you like coming here? Tell us what you like the most. 

A. I take the school bus and I love coming to school! I like playing in school. 

Q. What do you come here and do? Which is your favourite/ least favourite part? 

A.  Once we reach here, we pray, then we get breakfast in the canteen and then we head to our class. I love when I am dancing in school! 

Q. Tell us your favourite subject.

A. I love English 

Q. What do you want to be when you grow up? Why?

A. I want to become a doctor as I would want to help other people. 

Q. What makes you happy? Sad? Scared? Angry? 

A. I do not like it when someone takes my seat in class and that makes me angry. 

Q. Tell us what you love, what/who inspires you? Why?           

A. I love food and I wish to keep eating always!

#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.

#ThisAbilityMatters – “I Love My School Because I Have Friends Here,” Reveals Mantasha.

Q. What is your name, age? Where do you live?

A.  I am Mantasha, I am 15-year old and living in Bandra.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. I come by school bus or sometimes walk and come to school. At home, I live with my parents, grandparents and four brothers. I have many friends such as Ridhi, Rekha, Umesalma, Maharooq. Some of them are with me on the school bus and we talk a lot!

Q. What do you like doing in your free time?

A. I love talking to my friends especially when teachers are not around.

Q. How do you come to the centre? Do you like coming here? Tell us what you like the most.

A. I take the school bus to reach here. I love playing badminton here.

Q. What do you come here and do? Which is your favourite/ least favourite part?

A. I come here and study and meet my friends and I have so many friends in school! I like everything here but I struggle using the skipping rope.

Q. Tell us your favourite subject.

A. I like Math because it is so much fun!

Q. What do you want to be when you grow up? Why?

A. I want to go to college, learn how to use the computer and work.

Q. What makes you happy? Sad? Scared? Angry?

A. I am happy when I can understand all the subjects that are taught in school, but I am scared of insects and do not like them.

Q. Tell us what you love, what inspires you or who inspires you? Why?          

A. I love movies! Alia Bhat and Varun Dhawan are my favourites!

Q. If you had one superpower, what would you like to do/change about your life?

A. I would win all the matches in Badminton!

#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.

#ThisAbilityMatters – “I Want To Become a Doctor When I Grow Up,” Says Mehak.

Q. What is your name, age? Where do you live?

A.  I am Mehak, I am 11-years-old living in Dharavi.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. In my house, I have my parents and siblings. Humza, Falak, Chavni are my friends because we do everything together.

Q. What do you like doing in your free time?

A. I like playing carrom.

Q. How do you come to the centre? Do you like coming here? Tell us what you like the most.

A. I take a bus to come to school, I like school, but sometimes I get bored as it requires to me get up early and come to school.

Q. What do you come here and do? Which is your favourite/ least favourite part?

A. I come here to study and meet my friends. I like all my friends and also like drawing.

Q. Tell us your favourite subject

A. Maths is my favourite subject.

Q. What do you want to be when you grow up? Why?

A. I want to become a doctor because I’d like to help people!

Q. What makes you happy? Sad? Scared? Angry?

A. I do not like waking up in the morning every day and I feel angry.

Q. If you had one superpower, what would you like to do/change about your life?

A. I will play without any restrictions!

#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.

#ThisAbilityMatters – “I Love Drawing,” Shares Shifan.

Q. What is your name, age? Where do you live?

A.  I am Shifan, I am 15-years-old living and I live in Bandra.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. I stay with Ammi, Abu, and I have my 3 siblings. Ayush is my best friend because I can talk with him about.

Q. What do you like doing in your free time?

A. I like to watch movies.

Q. How do you come to the centre? Do you like coming here? Tell us what you like the most.

A. I take a BEST bus to come to school. I like school because it is a nice place to study. I like drawing the most in school.

Q. What do you come here and do? Which is your favourite/ least favourite part?

A. I come here to study and I also get very tasty and healthy food!

Q. Tell us your favourite subject.

A. Drawing!

Q. What do you want to be when you grow up? Why?

A. I will grow up and do a job soon!

Q. What makes you happy? Sad? Scared? Angry?

A. I like being with my friends and like coming to school.

Q. If you had one superpower, what would you like to do/change about your life?

A. I will keep playing.

#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.

#ThisAbilityMatters – “I Will Become a Hero When I Grow Up! Declares Danish.

Q. What is your name, age? Where do you live?

A.  I am Danish Siddique, I am 19 years old and I live in Bandra.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. In my house, I have my Ammi, Abu, and three siblings. I am the youngest of all. Osama is my best friend as he is my childhood friend. 

Q. What do you like doing in your free time?

A. I like watching TV, movies and I love all Salman Khan Movies.

Q. How do you come to the centre? Do you like coming here? Tell us what you like the most.

A. I take a bus to reach the school. I like to study and play.

Q. What do you come here and do? Which is your favourite/ least favourite part?

A. We come here and first do our prayers and have a banana. Post that we study. I like all the food that we get here and dal chawal is my favourite. My least favourite thing to do is play table tennis. It is so difficult and I cannot play the sport.

Q. Tell us your favourite subject

A. I love both English and Hindi.

Q. What do you want to be when you grow up? Why?

A. I will either become a hero or run by own business.

Q. What makes you happy? Sad? Scared? Angry?

A I feel angry and sad whenever I have a fight with my friends. I am the happiest when I am being mischievous or studying in class. I get good grades and always come first in my class.

Q. India is an independent country. Did you know that? What does that mean?

A. Yes, I know that India is a free country and it is an independent country.

Q. What does independence mean to you?

A. I do not like it when someone tells me what to do and I feel sad. For me, being independent means being on my own without any restrictions.

Q. Tell us what you love, what inspires you or who inspires you? Why?          

A. Shah Rukh Khan! He is my inspiration     

Q. If you had one superpower, what would you like to do/change about your life?

A. I will do lots of mischief and never want to be caught for it!

#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.

#ThisAbilityMatters – “I Wish To Go To College” Rekha Tells Us.

Q. What is your name, age? Where do you live?

A.  I am Rekha, 18-year old living in Chunabhati.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. I have a big family and we are 10 members including my grandparents, siblings and parents. My best friend is Umesalma because we have been friends for so long and we do everything together!

Q. What do you like doing in your free time?

A. Badminton! I love playing Badminton.

Q. How do you come to the centre? Do you like coming here? Tell us what you like the most.

A. I take local transport and change two buses. First I take 505 and then I take the 10 or 7 number bus. Trains are always crowded and I prefer coming to school by bus.

Q. What do you come here and do? Which is your favourite/ least favourite part?

A. Learning English is my favourite part of coming to school

Q. Tell us your favourite subject

A. English and Maths.

Q. What do you want to be when you grow up? Why?

A. I will first go to college and then earn lots of money! I also wish to work in a beauty parlour.

Q. What makes you happy? Sad? Scared? Angry?

A. Coming to school makes me happy!

Q. Tell us what you love, what inspires you or who inspires you? Why?           

A. Ranveer Singh! He is so good.    

Q. If you had one superpower, what would you like to do/change about your life?

A. I am good at running so I would want to win every race I participate in!

#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.

#ThisAbilityMatters – “I Will Rule the World,” Says 15-Year-Old Abhujar

Q. What is your name, age? Where do you live?

A.  I am Abhujar, 15-year old living in Bandra.

Q. Tell us about your family and friends. Who is your best friend? Why?

A. I have two sisters and my parents. I am the youngest but the naughtiest of all!

Viraj, Prateek, Abdul, Kudir, Atharv all of these are my best friend as we do everything together!

Q. What do you like doing in your free time?

A. I love to cycle with my friends, play cricket, football and table tennis till late evening. Post dinner, I am glued to the television and love watching Aladin.

Q. How do you come to the centre? Do you like coming here? Tell us what you like the most.

A. I take the local transport and come to school in the BEST bus. I love coming to school because the studies are good, I have my friends here and also like the food. We get everything from Dal Chawal, Biryani to Pulav.

Q. What do you come here and do? Which is your favourite/ least favourite part?

A. I was recently shifted to a new class and got separated from all my friends. I do not like it. I like playing cricket. Dhoni is my ekdum ‘Ek number’!

Q. Tell us your favourite subject

A. Currently, I am learning to make spices in school and I like that.

Q. What do you want to be when you grow up? Why?

A. I want to become a cricketer or I will become a businessman!

Q. What makes you happy? Sad? Scared? Angry?

A. I like being naughty and teasing all children, however, now I do not do that because then parents come to school and compliant about me!

Q. Tell us what you love, what inspires you or who inspires you? Why?          

A. I love Dhoni!

Q. India is an independent country. Did you know that? What does that mean?

A. Yes, India was first ruled by the British and now it is a free country!

Q. What does freedom mean to you?

A. Freedom means to do things the way I like them.

Q. If you had one superpower, what would you like to do/change about your life?

A. I will rule the world! I will fight and win over everyone!

#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.

#ThisAbilityMatters – Rising Above Society’s Stereotypes, Pravin’s Journey In Challenging His Disability & Becoming A Role Model To His Son

“I am not broken nor a problem to solve, I am not a learning tool to make you more evolved,

“I’m a passion and a person, I have ambition, love and drive,

“I could be free of all the shackles you draw on me in your mind if you’d let me be.”

Tilly Moses

#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.

Nishant Pravin Bambarkar dreams of being India’s best teacher when he finishes school. “I’ll be the top painter and will teach painting to my students,” says the gusty 17 year old with an ear-to-ear smile. “I have been learning to paint from baba from the time I was little and I feel he is the best teacher. But I want to be even better than him, the bestest in fact.” Nishant’s teacher and father, Pravin Dattaram Bambarkar, unlike most other teachers was born with congenital deafness. Pravin taught and guided his son Nishant, who has normal hearing ability, with sign language and expressions.  

Pravin lost his father at a very young age. Without a breadwinner, the family of five – Pravin, his two younger siblings along with his mother and grandmother – were left forlorn. His mother and grandmother took up menial jobs that would hardly provide even the bare minimum to raise the children. The circumstances drove Pravin’s mother into severe depression and she was unable to continue working. A few years later, his grandmother passed away, leaving the children to the help of their neighbours, who provided them with food and clothing for some time.

Pravin was brought face to face with Save The Children India. Had he been initiated into our program in his early years, his progress would’ve been much quicker. His journey in dealing with his inability to hear, took him through a series of highs and lows. From learning sign language, completion of an informal education, to obtaining a Diploma in drawing and painting from a government run Vocational Rehabilitation Centre, Pravin’s spirit to never give up, lifted him from a life of dependency.

After his Diploma, Pravin took up several ad hoc jobs to support his family. He was exploited and cheated by most of his employers who either under paid him or made him work extra hours without compensation. Frustrated with this treatment, he approached Vipula Kadri at his alma mater at Save The Children India. With a fair chance on several projects, Pravin did exceptionally well on the work he took on.

Meanwhile, Pravin completed his formal education along with another vocational technical course from a government institute. Today he is employed as an Assistant Teacher with the Special Care Centre at Save The Children India and has been passionately teaching arts and crafts to the children with special needs at the school.

Pravin has a natural gift of the arts and took to pottery, painting and ikebana just like a fish takes to water. He is the only Indian who has represented India in all the above three categories at the International Abilympics in India, Bordeaux (France), South Korea and Shizouka (Japan). Contestants from more than 35 countries vie for the top three spots in these competition. He won bronze at the International Abilympics 2005 in the pottery category and was also given the award by Dr. APJ Abdul Kalam. He has won several other competitions and his achievements have been recognized by the state and central governments. 

Today, Pravin is married to Nalini who is also an alumni of the special school run by Save The Children India, They have two loving sons, Nishant (17 years) and Pranav (11 years), with normal hearing abilities. Both of them have grown up being taught in sign language. Inspired by his father, Pravin’s elder son has chosen fine arts as his subject for his graduate studies. Nishant says, “Sign language must be made mandatory in all schools so that there’s no barrier between the hearing impaired and other people.”  

#ThisAbilityMatters – Decoding Project Dhvani & It’s Work On The Invisible Condition Of Hearing-Impairment With Children

It was the dream of Mrs. Vipula Kadri, Founder & National Director, Save The Children India, that the organization start an early intervention program for hearing impaired infants and children. Her foresight led to the incubation of Program Dhvani, to identify and treat hearing loss in early childhood, helping children with hearing impairment listen, learn, talk and be integrated into society.

In conversation with Akanksha Dhuri, Program Head of Dhvani, whose 10 years of association with the Early Intervention Centre for Hearing Impaired (since it’s inception) gives us insight and understanding on the urgent need for early intervention amongst children.

#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.

Q) Describe for us the current scenario in context to children and disabilities in India.

A: According to WHO (2018) data, the prevalence of hearing impairment (HI) in India is around 6.3% (63 million people suffering from significant auditory loss). The estimated prevalence of adult-onset deafness in India is 7.6% and childhood-onset deafness is 2%.

Hearing loss is identified in about 3 in 1,000 new-borns and by the time the child is ready to start school it increases to about 1 in 300 children. This increase can be attributed to a range of factors including (1) failure to detect at birth (2) progressive hearing loss in either or both ears or (3) trauma, infections, etc.

Hearing loss is often treated as a ‘low-profile’ disability as it cannot be seen or easily identified, thus resulting in low awareness. Commonly referred to as an ‘invisible’ condition, the most credible approach to ensure that children suffering from hearing loss can be identified and treated at an early stage, is to get every new-born screened for possible symptoms at birth. Implemented across most developing countries, the Universal New-born Hearing Screening (UNHS) is a medical test for early detection of congenital hearing loss, to manage the condition in an effective way.

According to the World Health Organization (WHO), 60 percent of hearing loss in children under 15 years of age is preventable. Unless intervened, hearing loss in early childhood has direct impact on communication, literacy, learning, social & emotional development, educational attainment and future employment opportunities. Children who are identified and receive appropriate intervention early are more likely to demonstrate language development within the normal range by the time they enter school.

Over the past two decades, dramatic improvements in hearing screening technology have significantly lowered the age at which children with hearing loss can be identified. However, there is lack of awareness of the interventions and services available. At the same time these services and surgical interventions are expensive for people from less privileged background, lending to the numbers in India.

Q) Tell us about Program Dhvani and why it was conceptualized. How does this program fulfil the gaps in the system (for children)?

A:Lack of services of mandatory new-born hearing screening and delay in the identification and treatment of congenital auditory impairment can adversely affect the quality of life, in terms of language acquisition, social interaction, and emotional development, education, and employment prospects of children in their later years. There is an urgent need to sensitize expectant parents and families, family doctors, pediatricians and gynecologists to strongly recommend a neonatal hearing screening for every new-born.

Save The Children India has been running a Special School for children with hearing impairment for the last 30 years. However, over a period of time it has been realized that by the time children are enrolled (at the age of 5 and above) in the Special School, the critical period of their development is wasted. By then children already develop their own sign language and signing system to communicate despite having the potential to develop spoken language and verbal communication skills. This condition then becomes difficult to reverse. But if hearing loss is detected and intervened at an early stage, these children can develop speech, language and communication skills naturally.

Recognizing this need, we initiated Dhvani in 2010 – an early intervention centre for children from all strata of society. Dhvani provides easy access to valuable services of testing and early diagnosis, treatment like cochlear implant, counseling, training, amongst others, that can help transform the life of the hearing-impaired children.

Q) Program Dhvani uses state of the art technology to provide a more holistic service for children. Elaborate in context to technology used globally.

A: Dhvani provides a bouquet of solutions and services to fulfil the needs of children with hearing impairment under one roof. It strives to develop communication skills of hearing impaired children at the foundation stage so that they can be mainstreamed into society. This is streamlined by the use of new and effective tech at every stage in early intervention.

For early diagnosis, we use modern day technology like audiological equipment and sound proof rooms, accurate audiological evaluation and comprehensive audiological test battery that include Infant Hearing Screening Program (using OAE/AABR techniques), Pure Tone Audiometry (AC/BC Unaided/Aided), Tympanometry, Speech Audiometry (Unaided/Aided), MAPPING & trouble shooting of hearing aids and speech processors, CI assisted audiometry.

For early amplification, once diagnosed as having hearing loss in either or both ears, and after consulting with ENT specialists he/she will be fitted with good quality digital hearing aids. Additionally, under early intervention, we provide access to qualified & experienced auditory verbal therapy specialists who conduct individual therapy sessions & follow globally accepted auditory verbal therapy approaches. Dhvani uses standardised guidelines & principles coupled with scientific diagnostic methods to emphasize on listening and speaking naturally.

A more holistic approach for the progress of children with hearing impairment includes, early implantation, pre- and post-cochlear implant management for those children who are not showing desired progress. Counseling for parents, family support and guidance for caretakers of hearing impaired children is a key function to ensure an improved ecosystem of care. Experienced special educators assist parents on the selection of the school, medium, board, etc., through Dhvani’s School Readiness Programme on an individual and group basis, that helps children with their overall education.

Q) How do you integrate different stakeholders in creating a conducive environment for children? 

A: 1. Parents & Family: For any successful intervention, involvement of parents and the extended family members is very crucial. Dhvani follows the proven best practices of Auditory Verbal Therapy through customized plans and sessions where parents are partners in this journey. 

2. Professionals: Dhvani involves other professionals for comprehensive evaluation of children. It works towards creating awareness about hearing impairment and its effects on early childhood development. Dhvani invites and seeks opportunities to train professionals through various workshops.

Q) Why is mainstreaming of disabled children important at an early stage?

A: The purpose of mainstreaming is to help children with hearing impairment adjust to being with their normal hearing peers and to help them adapt to the demands of a regular-education in the classrooms. It also helps students follow the same curriculum as non-disabled peers, equipping them access to the same opportunities in the future.

It teaches all students compassion, acceptance, collaboration and patience – life-long skills that will better prepare them for the future.

Q) What remains to be done in relation to policy and law? 

A: There is a lack of public awareness about hearing impairment and its treatment in general. Infant hearing screening needs to be made universal/ mandatory through policy and law.

Q) What do you believe are gaps in the current context? 

A: There are multiple reasons for gaps in the current context. From over population, limited number of trained professionals, lack of awareness on the specific issue, lack of standardized protocols for management of children with hearing impairment by parents and professionals, lack of early detection facilities and limited access for majority of the population, to name a few.

Q) If Program Dhvani were to scale, which issues in particular would it advocate at a national level? And how?

A: Program Dhvani aims to make New Born Hearing Screening mandatory at a national level. We aim to advocate for this by conducting free Infant Hearing Screening Camps during the first week of every month, by promoting our programme through partnerships with various organizations, creating awareness through community outreach programmes and campaigns and conducting regular workshops for medical and non-medical professionals.  

Q) What are the long-term aspirations for Program Dhvani?

A: The aspirations of Dhvani is to keep in mind the engagement of key stakeholders, access to basic services for children with hearing impairment, and scaling up to reach more children.

From 2020-2024 we aim to have infant screening in place, expand our geographical reach in Mumbai and Maharashtra, undertake training for parents and professionals to build a conducive ecosystem for children with hearing impairment and a hub that allows for the convergence of the best services and practices for effective early intervention.

Our impact: 5000+ infants will be screened for hearing impairment, 1000 Pre-School children will be screened for early childhood/ acquired hearing impairment, 100% mainstreaming of children into reputed schools in Mumbai, 200 children will benefit from the overall program, 300+ doctors and healthcare professionals will be trained through online training courses and we shall conduct 30 camps for public and community awareness.

Q) Share with us a story of a child who was mainstreamed because of Program Dhvani.

The story of Aariz is best told through his mother’s words.

My son Aariz was born on 6th November, 2012. When Aariz was 15 months old, we took him for a vaccination. The doctor asked me how many meaningful words he could speak. We responded saying he was just babbling, and spoke no meaningful words at the time. She displayed suspicion about Aariz having a hearing impairment. But we never felt this, as Aariz was responding to some sounds. The pediatric then advised us to get few tests done. The results were a big blow to me and my family, and my fears had come true. It was difficult to accept that Aariz would not hear and speak like us.

Our disbelief and disappointment, led us to undertake the tests again at several hospitals, hoping that the report would be negated. Unfortunately, all the reports from different hospitals matched, leaving us shattered. Aariz was diagnosed with severe bilateral sensorineural hearing loss.

We had no idea what this meant and what we would do. How would Aariz survive with his disability in this world? This thought would keep my husband and me up all night. We would sit together and cry, praying to God for a miracle.

On a consultation with Dr. Milind Kirtane, he advised us to visit Dhvani at Save The Children India. In August, 2014 we started Aariz’s audiology and language therapy sessions. Soon after, when Aariz was almost 2 years old, he was fitted with hearing aids. I still remember the day my child heard sounds for the first time! Our first session was fantastic and a real breath of fresh air. With the help and encouragement of the passionate staff and specialists at Dhvani, their advice and the resources at the centre, we immediately felt like a part of Dhvani who were on a journey to get my child to listen and talk. Aariz would get excited when he knew it was time for therapy at Dhvani. 

After 3-4 months of getting his hearing aids, Aariz started getting used to various sounds. A play way method was used during the training and language therapy started in English. Aariz was encouraged to vocalize and slowly he started listening to various sounds. He responded well and started making quick progress. Gradually, Aariz started talking in one word utterances and we were on cloud nine hearing our child speak. By the time Aariz was 3.5 years old, he was able to speak in simple 3 to 4 words sentences. At that time, we enrolled him in a preschool. Aariz was quick to learn different concepts and he made overwhelming progress. 

Today, Aariz is 7 years old, goes to a reputed regular school. He is doing quite well and participates in poem recitation, sports, dance competitions. etc. without any fear, just like other children. He loves reading books. He writes well and is showing remarkable progress in academics. He has interest in sports, he goes to skating, drawing and craft classes. His confidence level has risen.  He can now listen like any other child of his age and speak clearly and confidently in long sentences in Hindi as well as in English. He comprehends complex commands and can effortlessly carry out story narration. Everyday Aariz learns new things and shares it with me. 

I cannot be more proud of my son overcame who translated his disability into his ability. My family and I are over the moon. Though the initial journey was tough, our family is blessed with a very supportive network of friends and of course everyone at Dhvani. Now, I feel I have gained experience to help others who are in the same position as Aariz and I were once in. This has motivated me so much that I have enrolled for a special education course, to help other children too.

I hope that Aariz’z story will spread awareness about early identification and intervention so that every child with hearing impairment can achieve successful inclusion in society. I also hope to motivate parents to work harder and provide good home training for their children since the rehabilitation of children with hearing impairment is a long-term process.