The day after Partha was born, we learnt that suffered from congenital single-sided hearing loss, which meant that he was completely deaf on his right side, but had normal hearing on his left.
Between the incredible joy of holding our precious baby boy and our complex emotions around his diagnosis, there was one thing that Ashwin and I were certain off. We wanted Partha to be confident. We wanted him to ‘own his disability’ – to be discuss it openly and to be able to advocate for himself from a young age. We knew our baby would learn best from watching us, so we had to teach him by doing the same.
We started off by telling close friends and family about his diagnosis. I cannot express how much the kindness and love from family meant to us in those early days. My parents spent a few months with us when Partha was born and their steadfast love and support was our anchor.
When Partha was a year old, and after many doctor appointments, he was fitted with a ‘bone-anchored hearing aid’ or a ‘BAHA’. It is a device that captures sound on his deaf side and transmits it through his skull bones to the his hearing side, thus giving him an experience of surround sound. The BAHA is a portable device and Partha wears it attached to a colorful headband.
Once he was fitted with this device, a somewhat invisible disability became a little more visible and the BAHA gave us a further opportunity to learn and educate. Our baby boy was becoming more vocal and babbling more each day. We started telling people more about his hearing loss. We would remind them to be mindful of his hearing side and his deaf side. While meeting other kids, we told them the BAHA was not a toy – it was a device to help Partha listen better and they are not allowed to touch it or pull it off his head.
COVID-19 came and Partha stopped going to daycare and stayed at home with us. More than a year later, when he started preschool, we went to school with him and did a little ‘Show and Tell’. We spoke about his hearing loss, showed the device to his friends and teachers and explained to them that they might have to repeat if Partha doesn’t hear them the first time.
As we started emerging from our COVID isolation and meeting close friends, we would would encourage them to ask Partha about his BAHA. We wanted him to practice and get comfortable with people asking questions.
In September 2022, Partha started kindergarten. A few weeks into school, he came home excitedly and told us ‘Guess what! My teacher asked me to talk about my BAHA today!’ Our big boy apparently did a little presentation at school – he showed his classmates the device and explained what it does. His teacher said that he showed them how to change the battery, he told them how he has a dozen colorful headbands and picks a different one each day. He did all this without Amma and Appa’s prompting or preparation – he had his new teacher and audiologist for support.
A few weeks ago, we attended an after-school family fun night. As we walked into the very noisy building, an older kid ran upto Partha and said ‘Hey Partha! I gotta tell you something!!! Oh, remind me, which side is your hearing side?’ Without skipping a beat, Partha responded ‘So my left side is my hearing side – can you come this side and tell me’. The other kid ran over to his left side, said something to him and they both shared a broad grin.
Ashwin and I looked at each other and shared what we call ‘a heart melting moment’.
A lot of times we’d had people tell us that they cannot believe Partha suffers from hearing loss. I don’t quite know how to respond and I usually shrug my shoulders – I suppose it is an observation.
Our work here is far from done – I’m sure there will be many moments in the future both easy and difficult and I know that the world is not always a kind place. But to see my child advocating for himself with all the confidence of a shy 5 year old – it is the most joyful parenting experience.
If you’ve read this far and you would like to learn more about hearing loss and how to work with young children who have hearing loss, please look at http://www.balavidyalayaschool.org/. My grandmother started this school more than 50 years ago and Amma and her fabulous colleagues run the school now. I guarantee you will walk away inspired.