Luca’s Story – How a child born deafblind learned to communicate with the world

A boy with a Santa hat on in a wheelchair

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 terrified he wouldn’t be able to communicate, or enjoy things that other children do.Luca’s three now and it’s been a hard road for the whole family, he was in hospital for the first eight months of his life. But, thanks to the generosity of our wonderful supporters, 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.
Understandably, Faye and Ben were in shock. It’s daunting for any parent to learn that they have a child who is disabled. I’m just so grateful that I was there to give them support and reassurance. Also, meeting Luca so early on had another huge advantage: I’ve learnt in my 23 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.

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 simplified form of sign), 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!

Knowing some signs helps Luca, who has a bone anchored hearing aid, to get more out of the thing he loves most in the world – music. 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.

A happy woman holds a smiling boy during a play session
Anne Cheesbrough plays with Luca at the 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.

I can’t thank our supporters enough for all they do to make our work with children like Luca possible. The work the Sense Specialist Service for Children and Young People does, relies entirely on the generosity of our supporters. Luca is such an intelligent and happy little boy and I’m so proud of the progress he’s made.

Find out more about the Sense Specialist Services for Children and Young People 

One thought on “Luca’s Story – How a child born deafblind learned to communicate with the world”

  1. Great to see you blogging about the life changing work you do Anne.

    It’s lovely to see Luca doing well, he is such as a charming boy.

    As a parent of another child with Charge, when our daughter was in hospital for nearly a year and her mum was unwell, being introduced to Anne was like an Angel had been sent to us. I honestly do not know how we would have got through that time without her.

    No amount of words can explain the difference that Anne, Anthony, Anya, Sense make to children and their families.

    When you are in hospital with a child with multiple disabilities facing numerous potentially fatal surgeries, it’s very rare to meet anyone else who is positive about your child’s outlook.

    Speaking with Anne and knowing that she would be visiting, gave us hope and something to look forward to, we cannot thank you enough for the support we all received.

    To see our daughter light up with excitement when she sees Anne is heart warming, and I have no doubt that the activities she did on her visits made a huge difference to our daughters recovery from all the operations and procedures. To have someone who is so passionate about deafblind children with complex needs and can teach and support you is priceless.

    Our eldest two daughters went on a Sense holiday last year with Anya and colleagues, which I have to admit I was a little worried considering they were only 7 and 5 at the time. This was recommended by Anne, the positive impact this holiday had on them was amazing. Our shy introverted 5 year old could not wait to tell me about all the different activities she had done, the opportunity to mix with other children who have deafblind siblings and try new things gave them a massive confidence boost.

    Anne, you are inspirational and a wonderful advocate for deafblind children.

    A big thank you to all at Sense 🙂

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