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Skye and her parents’ story: ‘It does matter’

8 year old Skye lives with her parents, Mike, 43 and Adele, 44, in Surrey. Before she was 4, Skye was diagnosed with Enlarged Vestibular Aqueduct (EVA). She has bilateral hearing loss, severe hearing loss in her right ear and moderate hearing loss in her left ear.

Discovering Skye’s hearing loss was a gradual process, marked by initial concerns and consultations with various professionals. Skye’s parents persisted in seeking answers, eventually leading to a diagnosis of hearing loss.

Skye now wears hearing aids which the family affectionately call her ‘magic ears’. She communicates with her family and friends in several ways: from a conversation, to BSL. 

Here Mike and Adele reveal how Skye’s hearing has brought the family closer whilst reflecting on some of the misconceptions surrounding people who are deaf.

Discovering Skye’s hearing loss

Deafness wasn’t on our radar at all and it came as a shock.”

Adele: ‘I knew there was something up, but everyone was telling us not to worry, she’s still a baby.

Before Skye was 4, she had a hearing test and the results were inconsistent. Skye was referred to a specialist paediatric audiology where she was diagnosed with hearing loss. The doctor said it was in both her ears. They didn’t know the exact levels but thought it could be severe. I went home to break the news to Mike, it was really hard. We were both in shock but also felt relief, because the diagnosis explained quite a lot… but she was only three-years-old. Everyone told us that everything was fine with Skye, but suddenly she wasn’t fine.

When she was a baby she was incredibly responsive to sound, which doesn’t marry with having a deaf child. This is where deafness is misunderstood. Deafness isn’t total and utter silence. It’s variations of sound. Everybody has a different variation to that sound.’

Mike: ‘Deafness wasn’t on our radar at all and it came as a shock. It’s something that is a little bit scary because it’s unknown. They said Skye’s hearing would not get better, but could get worse. My initial reaction was, ‘how can I fix it?’ Then I spoke to a deaf colleague, and he said there’s nothing to fix. It’s just part of who Skye is. It’s about adapting, learning and growing together, and that was a turning point for me.’

Facing boundaries and public attitudes

There’s a lot of noise, so for Skye trying to understand what’s going on is instantly harder.”

Mike: ‘I think there’s a misconception in society that deafness is binary. But it’s not black and white, there are shades of grey. There have been a few times where we mention that Skye is deaf, and the response is, ‘but she talks?’ It’s crazy that it’s still so misunderstood. People think that deaf people can’t hear a thing, that what they’re hearing is completely silent. They think that they can’t talk to you if you use sign language. That’s just not the case.’

Adele: ‘There have been awful moments, particularly when we visited a private school for Skye. We received some pretty painful feedback that they were worried that Skye would bring down the academic rigor of their institution. I couldn’t drive home. I just broke down. It was heartbreaking.

The greatest boundary Skye has faced is being understood and understanding people in social settings. In the playgrounds, where it’s already noisy for Skye, trying to understand what’s going on is instantly harder. She can’t always hear children, especially from a distance with all the noise. That has been taken as, ‘she’s not interested in playing’, which isn’t the case. When Skye was younger she didn’t have the ability to say, ‘I don’t understand. Can you slow down?’ This is something that she learned later. There’s been lots of misunderstandings on the playground and hurt feelings.’ 

Skye’s world: navigating life with hearing loss

Skye and her dad, Mike, signing

Skye never gave up, never surrendered. It didn’t matter that she didn’t know the word. She found a way to say what she wanted to say until she found her words.”

Adele: ‘Skye sees herself as absolutely normal. As we grew with her deafness, and she started to understand her ears and her magic hearing aids, she always looked at it as fun and exciting. Kids that are her age are two years ahead of her in terms of language, so complicated gameplay and all those things is sometimes a struggle.

‘Skye never gave up, never surrendered. It didn’t matter that she didn’t know some words, she found a way to say what she wanted to say until she found her words. She makes friends with everybody, she’s so sociable, welcoming and forgiving.’

Learning to sign

Adele: ‘Skye needed support and that included sign language. We felt it was very important that she knew how to sign, particularly with the potential that she could one day wake up profoundly deaf. We’ll never have an indicator of whether this is going to happen.

‘I loved sign language from the minute I realised it could help when Skye was emotional. If Skye has no language to explain something that had happened, she uses sign language to cut through all of that. Being able to communicate at a distance without yelling is also a massive advantage. As a family, we have signing lessons with a deaf tutor.’

Introducing hearing aids

Adele: ‘We were always a bit nervous introducing Skye to hearing aids. We wanted to give them a positive spin. We had this amazing speech and language therapist, who helped with the transition of hearing aids. She called them magic aids and we thought that was perfect.’

Mike: ‘Whenever Skye gets new moulds, we let her pick the colours. At school, she’s got mould with beads in them, like jewellery. She’s the only kid in school that’s allowed to wear jewellery and celebrate them.’

Looking to the future

Skye and her mum, Adele, playing

We may not be deaf, but we have a deaf daughter. There’s therefore a part of us that belongs with the deaf community.”

Adele: ‘We have modified our life to accommodate this new way of being, finding tools and resources to learn sign language. We have found different ways of communicating with each other. I see Skye’s deafness as an opportunity for us to learn and to expand. We would have never learned sign language otherwise. We’ve become stronger as a family. It’s become part of one of our identities. We may not be deaf, but we have a deaf daughter. There’s therefore a part of us that belongs with the deaf community, because we’re in it together.

‘We have a saying in our family and it’s ‘never give up, never surrender’. We never gave in to the thinking that deafness is a negative thing.’

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