Jodene Antoniou: Top 6 things I wish they’d told us about childhood deafness

Our son was diagnosed with hearing loss at his newborn hearing screening, but after over a year of borderline hearing test results, he wasn’t fitted with his hearing aids until 14 months.

When he was first diagnosed, it came as a shock as we had no prior history of hearing loss in our family. It was so important to be able to talk to family, friends and other parents about everything. Like most people with no experience of deafness, we didn’t know much about hearing devices, the issues faced by the deaf community, or what to expect our son to hear or not to hear – how could we?

The experience of having a child with hearing loss has been very different to what our initial expectations had been. We have found there are positive and negative things that as parents of a partially deaf child, we wish we had understood beforehand, and indeed, that others outside of the deaf community understood now.

Here’s the top 6 things I wish they’d told us about childhood deafness…

“He won’t hear perfectly with his hearing aids in.”

The hearing process is not just about amplifying sound. It’s highly complex and hearing aids cannot restore normal hearing.

Within a human ear, the pinna funnels sound in; the canal boosts high pitches for better speech understanding and the ear drum vibrates to send signals to the inner ear. Here, ossicles amplify sound which is then processed in the cochlea, using over 25,000 tiny hair cells to help interpret nuances of sound before sending the correct electrical signals to the brain.

In contrast, a hearing aid consists of a microphone that picks up sound, manipulates it mechanically and then sends that sound via a speaker to the inner ear in as many as two dozen channels.

We have felt the perception of hearing aids as restoring normal hearing can have a seriously negative impact on support for children with hearing loss. Sadly, children can wind up having their needs ignored, occasionally even facing accusations of laziness, selective hearing or just not paying attention!

“He won’t grow out of it, and you’ll be okay with that.”

Perhaps because glue ear is so common amongst children and infants, a common assumption about a child with hearing aids is that the loss is in some way conductive or will improve over time. Sensorineural hearing loss is caused by nerve damage to fibers in the inner ear. It will not improve with time.

Often, positive thinking in the early stages of diagnosis revolves around the possibility of your child’s hearing improving.

The truth is we have come to terms with our son’s hearing loss, and we don’t see it a ‘flaw’. There are things that are difficult for our son sometimes, and we wish it could be easier for him, but his hearing loss has become a part of what makes him who he is, and we wouldn’t change that for anything.

“You’ll care more about him being confident and proud of his hearing aids than you will about other people seeing them.”

Until you have a child with hearing loss, it’s instinctive to think at first that you would want to ‘hide’ his or her hearing device. However, very few parents of deaf children wind up actually taking this approach.

We want our son to wear his hearing device proudly and with confidence. We’d be far more concerned at this point, that making conscious efforts to hide his aids might only give him reasons to think that he should! We decorate them with coils, stickers, tube decorations and colourful retainers that make him happy. Who knows what the teenage years will bring, but right now, we love our son’s hearing aids and he loves them too!

“Just because you can hear some sounds, doesn’t mean you hear them all.”

For some people with no personal or family experience of living with hearing loss, things can seem very ‘black and white’. You’re either deaf or hearing – but actually, hearing loss fluctuates for different frequencies. Especially for children with moderate or mild hearing loss, these positive words can too often mean diagnoses get delayed or hearing needs get completely overlooked.

Yes, with his hearing aids in, our son hears us and turns to look if we yell his name across a crowd, but that doesn’t mean that he hears well enough to actually follow our instructions afterwards!

Also, children need maximum access to all frequencies of speech for speech development, understanding and inclusion. Our personal opinion is that speech therapy should be available as standard for all children with any level of hearing loss, regardless of a formal assessment.

“The struggles in adult and childhood deafness are not always the same”

For deaf children, it’s great to be part of a community, but sometimes hearing about every single deaf relative can get a bit tiresome.

The truth is, hearing adults can tend to group deaf adults and deaf children together in one group but the struggles of a deaf child can be quite different to those of a deaf adult and the isolation and communication difficulties can be increased tenfold.

Grown-ups with hearing loss are able use life experience as an aid to putting things into context, to help know what to expect. A toddler or young child can’t fill in gaps like that.

Comparing the struggles of a deaf adult and a deaf child like for like, can sometimes be a bit like comparing turning the sound off whilst watching an episode of The Simpsons to trying to learn about quantum mechanics from a physicist on mute.

“BSL is for everyone”

This is a big one and I truly wish we had known and been encouraged to learn BSL earlier on in our son’s diagnosis. There can be a stigma around children’s hearing loss and BSL that its use might in some way discourage speech.

Our experience has been totally opposite. At just under two years old, with little to no speech at all, we chose to do a BSL Level 1 course and teach our son. Using BSL helped him to communicate more easily and more importantly, made him realise why he might actually want to communicate with us, which encouraged his speech.

It can be easy to forget to use BSL, especially if you are a hearing parent and your child is only mildly or moderately deaf but it’s really important. Our son can use basic signs but often, when we can’t understand his speech, we see him waving his arms around frantically, trying to find the right BSL vocabulary. He loves signing and we want to teach him more – we only wish we’d done it sooner.

That’s it. The top 6 things I wish we had been told about children’s hearing loss.

Jodene says: “Our son’s deafness has changed our lives. Since diagnosis in 2012, we have started a company, www.MyLittleEars.com, which sells hearing aid retainers and accessories for children. More recently, we have used our working experience of video transcription to start a subtitling company, www.CapitalCaptions.com, with the aim of improving closed captions and subtitles for deaf and hard of hearing audiences.”