“Living Paintings was our ‘Eureka’ moment” – Matilda’s story
15th September 2023
Everyone knows the story of Matilda. Roald Dahl’s famous young bookworm would read every novel she could get her hands on from a very young age and stories became a huge part of her life. Laura Edwards loved the story so much that she named her daughter after the titular character hoping that she, too, would love to read. Unfortunately, her daughter Matilda wouldn’t take to stories as easily as her famous namesake. That’s because Matilda is visually impaired.
“When Matilda was born, she had beautiful silvery blonde hair that everyone commented on,” says Laura. “It was only when we noticed her eyes wobbling that we realised that her gorgeous hair was a sign of oculocutaneous albinism which affected her sight. It means that her depth perception isn’t great, and she can only see outlines but no fine details.”
Finding out that Matilda, now six, was visually impaired meant that getting her to engage with books and learn to read would be a huge challenge for the family. Laura and her husband Ryan and two older sons Tristan (12) and Alexander (14) all tried their best with large picture books, but nothing seemed to work.
But when Matilda was 18 months old, Laura decided to try something new. Living Paintings specialise in reading experiences for people who are blind or visually impaired. For very young children, these include picture books where the words match up with raised, textured pictures and audio that can make a real difference to children like Matilda.
“I heard about Living Paintings through Matilda’s QTVI (Qualified Teacher for the Visually Impaired). I registered for the free library, but I wasn’t hopeful,” she says.
“The first book we received was Spot the Dog. I remember thinking that Matilda wouldn’t be interested because we had already tried that book. But, when she felt the raised pictures for the first time, it was a real ‘Eureka’ moment, and something clicked in her little head. It was wonderful.”
From that moment on, Matilda was an avid fan of the Living Paintings library. “Rhyming books were her favourite when she was very small,” says Laura. “Once she had explored the tactile illustrations with her hands and could visualise the story, she could really enjoy listening to the words.”
Using the services of Living Paintings from an early age has sparked a love of reading and learning in Matilda which Laura noticed has impacted all areas of her school life.
“Living Paintings has made her love books and so she wants to read,” says Laura. “She uses a tablet so she can zoom in on the words. She now loves chapter books with pictures. Anything that involves witches or magic is her favourite!”
However, being visually impaired can still be challenging at school. “Although she can keep up academically, Matilda must be careful,” adds Laura. “Last year, she bumped into something and knocked out her two front teeth. It’s hard knowing that we can’t always keep her safe while at school.”
Despite Matilda’s challenges, Laura can still be pleasantly surprised at details she picks up through the Touch to See books.
“I couldn’t believe it when Matilda perfectly described a crown to me,” she says. “Living Paintings sent out a free coronation gift featuring a tactile version of St Edward’s Crown and Matilda was able to feel and visualise a crown for the first time – it really unlocked it for her and it was amazing to hear her describe the jewels and diamonds in such detail. This book especially allowed her to not only see the crown in her mind, but to verbalise what she was seeing to us. Her description matched the picture perfectly, and it was a real magical moment for us.”
As Matilda has been a Living Paintings member from such a young age, the charity has now enlisted her help to make the books the very best they can be. As a trusted ‘VI Editor’ Matilda is sent early versions of new releases and, together with her mum, can offer feedback and advice for improvement to ensure that all children have the best experience.
Matilda says: “I feel things better than I can see and I like to help with the new books. Dance with Oti: The Bird Jive is my favourite.”
The book is by Strictly Come Dancing’s Oti Mabuse and includes a step-by-step tutorial.
“I got to join in and try out the dancing,” says Matilda. “My mummy read the story and I acted it out. I could see the pictures through touching them and could help match them up with the story – it was so much fun.”
As for reading, thanks to Living Paintings, Matilda loves it as much as the little girl she was named after. The charity has inspired a love of books that may never have developed otherwise.
Laura adds: “Matilda takes her job as a VI editor for Living Paintings seriously and loves being a part of something so special. We’re so grateful that we discovered the charity so early on in Matilda’s life and we attribute her love of reading and stories as well as her fantastic imagination to those first books that unlocked pictures in her mind. She now wants to help children just like her to have the same experiences and really enjoys working with the team to make sure the books for visually impaired children are approved by visually impaired children.”