Tobie Fysh: Having a deaf son

Posted on April 26, 2012

“He probably just needs to dry out a bit” – that should have been the first indication that our first son could be deaf.

As it was, we didn’t take any hints from the multiple Newborn Hearing Screening tests, and how each time there was another excuse on why it needed to be repeated.

It wasn’t until half way through the referral at our local Audiology department that the penny started to drop.

Listening to minute after minute of increasingly loud sounds being piped into our perfect little boy’s head and no wavy lines appearing on screen, we were told (not very gently) that our son was profoundly deaf.

For us as hearing parents, with no history of deafness in the family tree, this was a massive shock.

I can’t remember us leaving the department but I can remember being in a stairwell of the hospital sobbing in each other’s arms with our 4 week old child between us (blissfully asleep).

Crying for what?

Not for him being deaf, but for the unknowns of his future (for some reason learning to drive was one of the first things we worried about!).

This was a Friday at about 3pm, and as such we didn’t have the chance to contact anyone over the weekend. So we started researching as much as possible about deafness via the internet.

I was lucky that as a child, my parents had been involved with the local deaf children’s group (as they had a deaf boy join the Scout group where they helped out). I can remember some of the get-togethers from my childhood so I had a little deaf awareness – plus I could remember my finger spelling!

Monday rolled round, and our local council sent us an amazing teacher of the deaf, who soon got us a sign language tutor who came once a week to help us get to grips with SSE. This was brilliant, and we could soon chat about any animals we were likely to see at the farm – and also what members of our family we had!

Once we started to get onto different foods and the world outside, the funding stopped.

So if I ever meet someone and try to converse with them using sign, I apologise for dropping down to finger spelling after asking them about pets and breakfast. (When I have the time and money I will enrol on a BSL course – promise!)

As we had no point of reference for development milestones around language, we never really noticed what our son was or wasn’t doing.

His first sign was “light” and it was around the time that a hearing child would start saying their first words. “Mum” and “Dad” followed soon after, and his signing vocabulary picked up daily. Once we got to 300 signs we stopped counting.

All through this he had hearing aids and all the joys that go with them (the whistling, the constant new moulds, the worry that they would get lost, the worry that they would get eaten!) but when we had met other familes with deaf children we started to explore the route to cochlear implants (I know that this is the part of our story that is going to divide the readership, how about we all agree to disagree on the different strategies for our children and all just try to get along?)

So the journey to bilateral cochlear implants started.

During this journey we found out that both my wife and I have genetic material (what a phrase!) that gives each of our children a one in four chance of being born deaf (the genes are Connexions 26 & 30 for those keeping score) so when we found out that my wife was expecting our second child we were then….. uh…… interested (is that the correct term?) in what would happen.

Would they be deaf too? If so, that wouldn’t be a problem. No really it wouldn’t!

Deaf siblings together to look out for each other at school, the shared language of sign that would allow them to have secret conversations, the chance to go on those NDCS weekends together (they look really good!).

A few weeks ago our second son was born and at 27 hours old had his test… and passed (incidentally, did you know you can’t fail the test – the only outcomes are pass or refer).

I asked them to do the secondary test – the AABR (automated auditory brainstem response) after the automated otoacoustic emissions test as I was sure we were going to have another deaf child.

I was surprised. Really surprised, like how could this be?

Its a one in four chance, surely we would be falling into the minority again. I’d built myself up for it, and then it’d been taken away.

So where does that leave us?

Well the boys will still look out for each other, still share sign language as a secret way of communicating (yes – we will teach our hearing son sign too) and as for the NDCS weekends? Well for those weekends that allow hearing siblings to come, both boys can go!

And when our deaf son goes on his own, he can make his own friends there, and then come home and tell his little brother all about it!

Tobie Fysh has been told that the vowels in his name are all the wrong way round. He and his wife fell into the deaf world when his first son was born profoundly deaf. Now with a second child (hearing) he’s trying to remember to be quiet at night. Follow him on Twitter at @TobieFysh

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