Anne, who works for Sense, has been working closely with Luca and his family since the day he was born. Slowly, through touch, sound and sight, she showed Luca’s parents how you can communicate differently.
I first met Faye and Ben, Luca’s mum and dad, in hospital on the day Luca was born - I happened to be there visiting another child. He had just been diagnosed with CHARGE syndrome, a rare genetic condition that affects his ability to see, hear and balance. Faye and Ben were in shock and didn’t know what the future might hold.
The sooner we start working, the more we can help children communicate
It’s daunting for any parent to learn that they have a child who is disabled. I’m just so grateful that, at that moment, I was there to give them support and reassurance. And meeting Luca so early had another huge advantage: I’ve learnt in my 26 years at Sense that the sooner we start working with a child, the more we can help them develop and learn to communicate.
For most children, communication evolves naturally as they watch and listen to the people around them and associate what they see and hear with ideas, actions and objects. But for children like Luca, communication has to be taught and learnt, and that takes time, patience and expertise.
First, I used hand-under-hand communication, then I used sign language
One of the first techniques I used is called hand-under-hand communication, where I rest Luca’s hand on mine, and we make signs together. This approach gives children like Luca control - they can take their hand away at any time – and the freedom to learn at their own pace. It was difficult at first because Luca had a lot of injections in his hands when he was in hospital so didn’t like to be touched, but he learned to trust me over time.
I would also sign to Luca, using British Sign Language or Makaton (a simpler form of sign language), making sure I was close to him as his vision is very limited. Over time, Luca began to associate signs, objects and sounds with ideas, things and actions. He was communicating!
We've helped Luca connect with the world
Luca’s six now and it’s been a hard road for the whole family. He was in hospital for the first eight months of his life and each day bought a new challenge. But, we’ve been there every step of the way to help Luca to connect with the world.
Learning signs has been crucial. It’s helped Luca and his family to communicate at the level Faye and Ben had thought might not be possible.
Knowing some sign language helps Luca to get more out of the thing he loves most in the world – music. His bone anchored hearing aid helps him pick up the sounds while we all sign the lyrics togethers. Luca’s not just enjoying music, he’s making it too – he loves nothing more than to sign and sing along to his favourite songs at our Sensory Explorers group.
One of Luca’s favourites is Twinkle, Twinkle, Little Star, which he signs in Makaton. It’s wonderful to see the huge smile on his face as he puts his heart and soul into performing the song – and to know he’s not going to be isolated.
Luca is such an intelligent, happy little boy and I’m so proud of him.
Find out about the different ways a child like Luca can communicate
Want to learn more about things like sign language and hand-under-hand communication? We've got lots more information.