27/03/2026
The National Deaf Children's Society supports deaf children and young people, along with their families, to help them thrive.
They provide expert advice, resources and support from diagnosis through to adulthood, helping families navigate education, communication and everyday life. They also campaign for better services and equal opportunities, ensuring deaf children have the same chances as everyone else.
A fantastic organisation making a real difference. To find out more, check out their page: The National Deaf Children's Society
"Sticking together helps us keep advocating for Esme.”
Jess shares how easy it is to miss the signs of deafness – and how her family focuses on what experiences Esme needs now.
"Esme’s been on quite a journey, from ear infections to being diagnosed with Pendred syndrome. While we now know that she’s deaf in her right ear, we’ve had our moments of soul-searching, and we’ve had a few tears.
Hearing loss wasn't a possibility that had registered with us at first. It was a bit of a bombshell. I remember thinking, “What do you mean she’s deaf? Where did that come from? What did we miss?”
It wasn’t just us. When we told Esme’s key worker at nursery that she might be deaf and need a hearing aid, he replied, “There’s no way! Her vocabulary’s too good.”
It’s easy to misunderstand the signs. We misunderstood them at the start, too. But as we thought about it, deafness began to make more sense.
There had been a few times when nursery staff mentioned Esme was missing what was being said.
We’d noticed how absolutely shattered she was after nursery. (Now we know that’s communication fatigue from having to work so hard to filter sounds.)
And we remembered how often we’d say something to Esme, and she’d answer a completely different question. We’d be at the café and say, “Do you need the toilet?” and she’d reply, “Oh, yes, please, I’d love one of those!”
We’d always put this down to a noisy environment. Or her being so bunged up and snotty. Or coinciding with an ear infection. Or just being a child, focusing on something else. We just didn’t realise.
Things could change quite suddenly with Pendred syndrome, so it’s refocused us as parents. Everyone wants their child to have the best possible life, but for us, that means thinking: What experiences do we need to give Esme now?
Esme’s taken in all in her stride. When her balance issues meant she couldn’t ride a bicycle, she adapted quickly and asked us, “When can you get me a trike?” She’s not shy about wearing her hearing aid either. In fact, she’s proud of it.
We’re looking into sign language, too. Esme could lose her hearing completely, so we want to make sure she won’t be cut off and that we’ll still have our communication.
What really helps us as parents is sticking together, like talking through decisions and debriefing after every appointment. Sticking together helps us keep advocating for Esme."
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