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Finding a deaf community

Published Date: 09 Apr 2020

Three babies lying on a green blanket

When I volunteered to write my first blog I wasn’t sure where to start but when the topic of ‘finding a deaf community’ was suggested I knew it was perfect for us. Since finding out our son Joshua (now two years old) had a hearing loss, we’ve been overwhelmed by the way the deaf community have welcomed us in with open arms, providing no end of emotional and practical support.

The world is currently a very different place to normal. The effects of COVID-19 have rapidly escalated in the last few weeks and life as we know it has changed. Now more than ever I appreciate the importance of being part of a deaf community and being able to lean on others for support as well as sharing our common experiences, hints and tips.

If we rewind just over two years to December 2017 my husband and I had just welcomed our son Joshua. We’d longed for a baby for around five years and so were ecstatic when he was born. Everything seemed perfect, until the newborn screening test came back with an inconclusive hearing test result. We were asked to take him back to the hospital audiology department for another test a couple of weeks later and we were reassured that 9 in 10 babies who were called back were fine.

I’m a statistician by background so my head also shouted out that this meant 1 in 10 babies called back wouldn’t be, but I’m also an optimist so my heart didn’t allow me to dwell on this. However, things quickly turned for the worst in the more extensive hearing loss test. After three long hours where we had to sit in silence, the audiologist advised we call it a day as Joshua refused to sleep, which was essential for the tests to be effective. I knew something was wrong by the end of this as her tone had changed and when treating ourselves to some coffee and cake to digest this info, Joshua finally fell to sleep. Just typical! I ran back up to the audiologist’s room and she offered to cancel her yoga class and stay on after hours to complete the test. That was the first time we’d felt such overwhelming, selfless support for Joshua. The audiologist’s care and compassion really helped us to digest the fact that the tests confirmed Joshua did indeed have a (mild at this time) hearing loss.

At first, we didn’t know where to turn. While our Christian faith sustained us throughout this difficult time, we felt overwhelmed with information. Our audiologist helped by putting us in touch with our local Teacher of the Deaf (ToD) and other families which has recently been through similar situations. We were also extremely fortunate to have family friends who had been in the same situation for us a few years earlier. They lived about two hours away from us, but nevertheless immediately invited us to their house for a delicious dinner and demonstrated just how well their then three-year-old son was developing. It was such an uplifting experience! They directed us to lots of useful resources on the National Deaf Children’s Society website, explained the practical aspects (in parent speak, not medical jargon) and put into perspective what this would mean. On leaving the house we felt much more confident that we would be able to develop an action plan to support our son to live life to the full.

A couple of weeks later our ToD and audiology technician came to the house and invited us to a sensory group for deaf children. I really didn’t fancy going to the first one of these – it was held on a Friday morning which clashed with a different playgroup I’d had my heart set on attending. I wondered if it was really necessary to attend as he was only two months old. Part of me just wanted to carry on as normal and enjoy the blissful first few months with a baby I’d envisioned, postponing dealing with the hearing loss for as long as I could, but wow, am I glad I went!

This sensory group for children with a hearing loss quickly became our firm favourite. At first we benefited from seeing how the older children coped with their hearing aids and the time for a chat over coffee with other parents but as time progressed and new, younger babies joined, I felt I was able to start giving back some of the love and advice we’d been given ourselves and help other families come to terms with their children’s hearing loss. It’s only a small group, typically attended by five to 10 children, but I set up a Facebook page for us to connect with each other outside of the group, share links to useful resources. We even put in a joint order for hearing aid hats to save on postage, as the ones we liked came all of the way from America!

Although I’m now back in full-time work and don’t get to see the other mums as much as I’d like, I still feel connected through Facebook and we’ve met up to do a variety of things in the year, including a sponsored run (for me) and sponsored walk/pushchair push (for the children) which raised hundreds of pounds to develop a ‘lending library’ of educational toys that were suitable to be used to support educational development of deaf children.

What’s really taken me aback in the last few weeks is how adaptable and supportive our ToD and audiology technicians have been to new ways of working as tighter COVID-19 related restrictions have been put in place and we can no longer meet together in person. Our ToD has used our Facebook page to upload videos of the games we play in our face-to-face group and we’ve somewhat successfully managed a few joint song and rhyme sessions over Skype too.

Alongside this, I also joined my local Centre for Deaf People in Swansea to start learning British Sign Language (BSL). This introduced me to one of the most inspiring group of people I’ve ever met! My BSL teacher is profoundly deaf and I wondered how we’d be able to communicate and learn but I couldn’t take my eyes of her. Watching the way she signed and expressed herself so beautifully was something I could only dream of - all of her colleagues and friends are much the same. As well as learning BSL with a great community, the centre runs playgroups for children and organises a few outings a year, a fantastic way to make friends who are in similar situations to you and support each other.

I would recommend any families with a child with a hearing loss connect with whoever you can in your local deaf community. If you have any questions you can also call the National Deaf Children’s Society helpline on 0808 800 8880. I’d love to connect with anyone who’d like to get in touch virtually – you can find me as ‘Julie Vile, NICE, Pontrhydyfen’ on Facebook. There really aren’t very many of us!

Julie

Julie and her husband James are parents to Joshua (2). Joshua is severely to profoundly deaf in both ears. He currently wears two hearing aids but has been referred to a cochlear implant centre to explore other options.