Tess Torjussen: It’s important to demystify deafness for hearing parents (BSL)

“He has a significant and permanent hearing loss”.

“He’s deaf”.

*Silence*

I look down at my sleeping baby and gently peel off the stickers and wires attached to his head. I look across the room to my husband – his emotion hidden by a mask – and look back at the audiologist, her kind eyes downcast.

*Silence*

This was my first ever encounter with deafness. A diagnosis.

I had never met anyone who was deaf and so I had a limited frame of reference. To me, deafness meant not being able to talk or interact with the world – a life filled with challenges and having to use sign language. As I sat in the audiologist’s room, I started to grieve everything he would miss and recognised a new and unwelcome emotion which I realised was pity.

It’s uncomfortable to write those words now, but I recollect it here with total honesty to highlight how “new” deafness is to the majority of parents whose children have a hearing loss, and consequently how frightening it can seem.

I mean this with no disrespect to the NHS and the amazing support they have given our family since Lucas was born, but right from the start, deafness is medicalised: It is “screened for”, “diagnosed” and “treated” and while it is fantastic that more children are being given access to speech as a result (our son included), I do wish that the rhetoric was more balanced and that hearing parents were encouraged to understand, celebrate and embrace their child’s deafness from the start.

So, if I could have known just four things then to help me process the diagnosis, what would they be?

1. A Deaf community exists

Raising a child to have a strong sense of their own identity in a community that you are not part of yourself is daunting. Just realising that a Deaf community existed and that they would be there, alongside us to help Lucas understand and celebrate his deafness throughout his life was a huge comfort.

On a personal level I am grateful for those in the Deaf community who have allowed me to ask stupid questions, or have kindly pointed out when I’ve got things wrong. They have accepted my ignorance with grace, but have enthusiastically encouraged my desire to understand.

2. He’s deaf therefore he can

It’s almost as if Rose Ayling-Ellis knew our story, because in the same week Lucas had his diagnosis of profound hearing loss, she sashayed onto our TV screens on Strictly as if to tell us “Hey guys – it’s all good!”. Watching her dance each week helped us realise that as a deaf person, Lucas would grow up with his own set of unique skills that hearing people will never get to experience.

Rose didn’t win Strictly despite her deafness, she won because of her deafness – because she had a unique experience of music, a visual connection with her partner and the ability to communicate and express herself with her body. The realisation that deafness would add to Lucas’s abilities rather than take something away was so helpful.

3. He gets to use BSL

I knew nothing about sign language before Lucas arrived in our lives. If you had asked me then, I’d have said it was a way of translating spoken word for those who can’t hear – something Lucas would have to resort to using; a substitute. I appreciate now how wrong that was – that it’s a language in its own right, with its own history, culture and structure that deaf people are proud to use.

Since starting my Level 1, I’ve enjoyed watching deaf performing artists and poets, and I have a new appreciation of how beautiful the language is. BSL isn’t something that Lucas will have to use, it’s something he gets to use, and lucky him!

4. Sound is within reach but silence is golden

After a lot of contemplation we made the decision for Lucas to receive cochlear implants at the age of 1 to give him as much opportunity to hear and develop speech from a young age. The other day he signed “bird, tree, where?” when he realised that he could hear birds (I had shown him what the sound was earlier that week).

We are so grateful that he has the opportunity to experience sound, but we’ll always respect the fact that he sometimes wants silence. Maybe in the future he will always want silence. As hearing parents it’s easy to forget how overwhelmingly loud our lives are – sometimes unpleasantly so.

I remember our deaf support worker telling me that her favourite part of the day is taking her hearing aids off in the evening and having a glorious hour or two of silence. Appreciating the beauty of silence, and respecting the fact that silence is a preference for some helps make deafness seem a lot less daunting.

For deaf readers of this article, it must seem strange that these 4 things have been a revelation to me when they are probably so obvious to you. I hope that our society changes so that the hearing community becomes more familiar with and appreciative of the Deaf community, but right now, most hearing parents simply don’t know these basic things – not through arrogance, but just plain ignorance.

I feel really passionately that hearing parents of deaf children should have access to the deaf community early on in their journey to demystify deafness and make the journey one of optimism rather than worry.

So from the scared parent sat in the audiology office 18 months ago to now, how does it feel to be a more informed hearing parent of a deaf child? Without wishing to sound trite, I feel proud. He’s amazing.

Don’t get me wrong, I do find it exhausting and overwhelming to be a mum on top of learning a new language and culture, learning about speech therapy and fathoming his hearing technology, but “nothing worth having ever came easy”.

And what could be more worthwhile than raising a happy child, confident in their own identity who is able to make friends in as many communities as he wants to be a part of?

Tess says: “I’m Tess and I live in Cambridgeshire with my husband, step-daughter, son, a bonkers black labrador and an unimpressed cat.  I’m mum to Lucas who is a cheeky 18 month who was born with severe-to-profound hearing loss.  My husband and I are both hearing, with no experience of hearing loss so Lucas’s diagnosis started us on a steep but enjoyable learning curve.  We have signed with Lucas from a very young age and he is now a brilliant communicator.  He received cochlear implants just before his first birthday and he’s enjoying showing us all the things he is starting to hear.”