Like many children his age, Sam loves football, computer games and watching TV with his family. He’s a keen Brighton & Hove Albion fan and has even played at the club’s Amex stadium. For most parents, knowing what makes their children happy or unhappy is simply a part of everyday life. But for Sam’s parents, Vicki and Alec, the ability to understand their son’s wishes and needs is a breakthrough they will never take for granted.
Sam, 10, has a rare genetic condition called CDKL5, which causes severe seizures and means he is unable to communicate verbally. When Sam joined Chailey Heritage School at the age of four, he had no clear way of making his feelings known – if he seemed unhappy or in pain, Vicki and Alec would often struggle to pinpoint the reason.
Several years on, the picture couldn’t be more different. Using a small ‘thumbs up’ movement, Sam can now take part in conversations, make his own decisions, and even tell his mum how much he loves her.
“The minute we stepped inside the School we experienced an overwhelming sensation of family and warmth. A whole new world opened up to us.”
Vicki, Sam’s Mum
Vicki says: “The staff at Chailey Heritage have been the key to unlocking our son to us. We can now feel confident that he understands what’s going on around him, and that he is involved in his own learning. The fact that he can be understood makes a huge, huge difference to his wellbeing, and we couldn’t be more grateful to his teachers and carers for their commitment to making this happen. The ethos at Chailey Heritage is to combine compassion with medical expertise – it’s a holistic approach that is tailored to each individual child and works so well.”
Communication between staff and parents is also high on the agenda, says Vicki. “I can go to work in the morning confident that all Sam’s needs are being met, but I know if there’s a problem, I will be contacted. At the end of the school day, we’ll read Sam’s diary and see photos of what he’s been doing all day - I’m constantly amazed to find out about the new things he has been discovering. He enjoys horse riding, loves Patchwork Farm, and especially likes using the computer.’
It was while working on the computer with his teaching assistant that Sam was able to communicate ‘I love you’ to his mum. “It’s impossible to express how much that meant,” says Vicki.
Sam’s two sisters, Daisy, 12, and Zara, 5, also feel part of the Chailey Heritage community; they are able to join in holiday clubs and the whole family can use the specially-equipped swimming pool at weekends.
Much as Daisy and Zara love their brother, Vicki recognises that being the sibling of a severely disabled child has many challenges. This led her to set up SIBS, a Chailey-based group that connects siblings from different families.
“We’ll arrange activities such as making dens in the wood or kayaking,” explains Vicki. “It’s great for the children to get together and let off steam. As families we all ‘get it’ – we understand the frustrations and get comfort from comparing experiences and sharing information. We come to rely on each other. For our other children, it’s much harder but actually they soon realise that there are many other kids out there who don’t stare anymore and for whom wheelchairs, feeding pumps and birthdays spent in hospitals are all too familiar.”
This year, Sam had his first ever school photo taken. “It’s a gorgeous picture and to be able to display it alongside Daisy’s and Zara’s school photos is something I thought we’d never see. We are just so grateful for his progress at Chailey Heritage and extremely proud of everything he has achieved.”