Max is 20 and has been coming to Chailey Heritage Foundation for nine years. He has been attending The Hub, a day service which includes access to the Life Skills Centre and a bespoke package for three nights a week in the Chailey bungalows.
Before Chailey Heritage Foundation, life was very different for Max and his family.
Life before Chailey Heritage Foundation
At just four and a half weeks old, Max contracted whooping cough which caused an acquired brain injury. This resulted in a diagnosis of cerebral palsy which led to profound and multiple learning difficulties.
After Max’s diagnosis the family moved to New Zealand, where they have extended family, as they knew that the climate and temperature could potentially help with Max’s health needs. At just one and a half years old, Max started pulling himself to standing. However, he began to experience an increase in epileptic fits and the family found they were spending almost every weekend in hospital with no respite.
In 2007 the family moved back to the U.K. where they would be able to access more resources for Max’s complex and varied health needs. For three years the family struggled to get the support he desperately needed.
Sadly, Max regressed and stopped walking which was very difficult as he had made so much progress. Things went from bad to worse when he developed a sepsis like illness due to his epilepsy medication. Max stopped eating and it was only when his mum discovered his love of Smash and gravy that she was able to get him to eat again.
Starting school at CHF
Max’s family were dedicated to getting him the care he needed. They had been to Chailey Heritage Foundation for a few appointments and had heard from other families about their positive experiences, so they decided to bring Max for a two day assessment to find out if he could attend the school. Max’s mum, Sam, recalls that, “Everything was Max centred, it was amazing and like a different world”.
She explains that they had never experienced such a wide ranging multi-disciplinary approach, where all staff and services co-ordinate in a holistic way to offer a range of therapies and onsite clinical services bespoke to each individual’s needs.
Max immediately responded to his new environment and within a year he started regaining his mobility, eating blended meals and swimming in the hydrotherapy pool.
Sam recalls the massive change it brought to the whole family and says it wasn’t just the care Max received at Chailey that helped, but the social care support the family received which was so life changing. As Max grew in confidence and physical ability, the family felt reassured that he was in good hands and started receiving respite care each weekend.
Max also responded well to respite. “Max loved staying in the bungalows which was a complete surprise to me!” Sam explains. “When he’s at home everything has to be completely structured. I never imagined he’d be able to pop out for breakfast at a café or go out for day trips at Sheffield Park.”
Max moved up to the 6th form two years early. He would regularly get up and visit students and teachers in other classrooms. This was encouraged and celebrated rather than restricted as had been the case with the family’s previous experiences. “Chailey has always celebrated what’s different about Max. They’re flexible, open, and if Max wanders in they will welcome him, telling the class “Max has come to visit us!”
The Dream Centre had just opened when Max started at The Hub and Sam tells how she was ‘blown away’ by the experience they created. “They created a virtual experience of barcodes moving around the screens to Max’s favourite nursery rhymes. He sat mesmerised for a whole hour which is unheard of for Max who would normally be looking for an escape route!” During the experience some of Max’s uncontrollable, repetitive behaviours completely stopped, showing just how engaged and relaxed he had become.
Hopes for the future
Max’s mum Sam says she hopes Max feels safe enough to continue making progress with his social life and growing in confidence to do new things. The family say that seeing him confident enough to socialise and visit new places has been so wonderful. In Sam’s words “It was like the angels started singing when Max came here!”