Lucy has been coming to Chailey since she was 9 years old when she started school here. She is a bright and happy individual who particularly loves swimming, music, and art as they allow her to express herself. Lucy has a great sense of fun and loves mischief and slapstick humour, especially if someone trips or drops something!
She lives on-site in the bungalows where she receives one to one support, 24 hours a day, as she has many health needs including spastic cerebral palsy, autism and anxiety and musculoskeletal problems including scoliosis and a painful right hip. With the support of a wonderful team at Chailey Heritage including teaching, residential and medical professionals, Lucy has made incredible progress and can now enjoy independence using her electric wheelchair and vocalise sentences to express herself. In fact, she has against all odds, defied the professionals who once told her parents she would never achieve these things!
Life before Chailey
Born ten weeks prematurely, Lucy suffered birth trauma and spent her first few weeks as a baby in the specialist care unit at Ashford hospital in Kent. Professionals told the family to not have any considerable expectations for Lucy’s future. Debbie, and Jonathan, Lucy’s parents found themselves in completely unfamiliar territory, learning everything as they went along and trying to make the best decisions on Lucy’s behalf.
Jonathan remembers how Lucy attended kindergarten with her sister and though the staff were lovely, no one was trained to help a child with Lucy’s complex needs. They then found Foxwood Primary School which helped children with special needs, but even there Lucy received no specialist or medical support, and it became clear that her needs were not being met. It was only through a chance conversation with a new Social Worker who mentioned Chailey Heritage that Jonathan and Debbie learned of the Foundation and the specialist support Lucy could receive.
After meeting a pediatrician who Jonathan describes as “being sent by God,” the family obtained a letter which was presented at a multi-disciplinary meeting, helping them to establish that Lucy’s specialist needs were not being met. It was then that her journey to Chailey began.
“Winning the lottery for Lucy”
Jonathan describes how gaining a place at Chailey Heritage was “like winning the lottery for Lucy.” He explains how hard it is for families of disabled children to “fight the system” to get their child the provision they need, often having to drive miles in a variety of directions just to access equipment, medical help or classes. “The holistic support and humanity at Chailey, where the complete wellbeing of the disabled person is cared for through a joined-up approach including school, medical and residential provision all in one place, is a lifeline for families like ours. There was just nothing like it in Kent where we live.”
In fact, when Lucy started at Chailey, a medical assessment revealed that her wheelchair was inappropriate and that Lucy’s scoliosis, (which twists the body putting pressure on the spine, joints, and organs), was advanced. Lucy was admitted to the Evelina Children’s Hospital where she had hip surgery followed by a full spinal fusion, (where the spine is supported by rods). After the operation Lucy was able to sit upright and her dad says, “It was like Lucy had a whole new lease of life, something in her changed as so much of the pain had been taken away.”
This new lease of life included driving a powered wheelchair, which professionals had previously told Lucy’s family she would not be able to do. According to Jonathan this was a life changing opportunity, because it enabled Lucy to exercise independence and choice for the first time, deciding where she wanted to go and when - “If Lucy had her way, she’d be driving all the way to Haywards Heath in her electric wheelchair, holding up all the cars behind her on the way!”
The same is true for her speech - with the help of a dedicated team of teaching staff and health professionals including speech and language therapists, Lucy has developed her speech and now can use short sentences to communicate with her team. “Lucy used to make little noises, but now she can use sentences and facial interaction which is a huge improvement since being at Chailey. She can now tell us if she’s in pain, but she can also enjoy being silly like when she delivers letters to reception and asks for wet wipes for a joke!”
“Holistic services that work together have released Lucy’s potential”
In addition to Lucy’s improved mobility and communication, her dad mentions how the on-site medical support she has at Chailey has enhanced her experience of life. The anxiety that Lucy experiences has not only been challenging in terms of her behaviour, but it has also been detrimental to her enjoyment of life. Jonathan explains that one of the Doctors from the on-site NHS clinical services helped the family to try new medication which has transformed Lucy’s life.
Building trust with families
When Lucy started school back in 2011, she boarded at Chailey each week travelling the 2 hours back and forth to her home in Folkestone, Kent. As time went on and the family’s confidence and trust grew, Lucy began to stay at Chailey for longer periods. She now boards here full time, going back home once a month and seeing her family every two weeks in-between at Chailey, with FaceTime calls during the week.
Even though the family looked at alternative options for Lucy post school, they decided to stay at Chailey because they were so happy with the care and provision she receives and did not feel that any other establishment provided the same variety and range of activities she enjoys.
Transitioning from school to the LSC (Leisure and Skills Centre)
The family admit that it was an anxious time when Lucy eventually completed school at Chailey, not knowing how she would find the transition to the next phase of her life here. At her school prom Jonathan describes the pride he felt when he saw her in her prom dress. “Lucy suddenly looked like a young woman, and we realised how much she’s grown up at Chailey. Even though parts of her are still like a three-month-old, in other ways she has developed into a young adult, so she is a real mixture.”
Through the support of the Pathways service, the residential care team and the LSC, Lucy has transitioned really well, and her favourite activities are swimming, music, and art because they allow her to express herself. She also loves structure and routine, so finds the reassurance of being on-site and accessing a full timetable of activities helpful.
Michelle says that Lucy is using her walker on a regular basis and doing very well in it. She is also continuing to practice her reversing when in her powered wheelchair, asking Michelle if it is safe to go backwards. Technology is not only helping Lucy achieve independence with her powered chair, but Michelle explains how important using her iPad has been for Lucy’s creativity and self-expression too. She loves to sing and listen to things on her iPad which she can use on her own.
Jonathan describes Lucy as having a photographic memory, so she will remember a song from years ago and can remember people’s faces too. She loves meeting new people and during her time at Chailey Heritage, she has even met a royal and a few celebrities! Jonathan says, “She’s met Camilla, but she much prefers being around men, so her favourite was definitely meeting Linford Christie!”
Michelle reflects, “Since Lucy has been at Chailey Heritage Foundation she has grown up considerably – she has learnt to manage her behaviour and anxiety a lot better, and she is encouraged to do things for herself and make her own choices. We are immensely proud of her.”
Hopes for the future
Lucy has come a long way since the days her family were told she would not be able to achieve all she has. She enjoys independence, cognition and creativity through powered mobility, speech, and opportunities to express herself at the LSC, and the family express how much Chailey Heritage Foundation has enhanced and enriched Lucy’s life.
Jonathan admits that his dream is for Lucy to continue enjoying life in this way and hopes that the future will provide Lucy with similar options elsewhere once her time with Chailey ends. “Chailey has set the bar really high, and we just hope we can find something out there to match the opportunities and experiences she has here.”
The family have been helping Chailey Heritage Foundation develop the Room of My Own Project, which aims to provide modern residential provision for the young people at Chailey Heritage. Jonathan expresses how empowering the project would be for those like Lucy. “Lucy has benefitted significantly from switch work, for example pressing buttons to feed the pigs at Patchwork Farm or using switches to operate mixers in cooking classes to create dishes.” He explains how this kind of technology helps young people like Lucy to understand and enjoy the connection between cause and effect. “It would be incredible if the new residential building could relate technology to real life, so that Lucy could use a switch to open a window or door, which would enhance her independence and decision making so much.”
Lucy has achieved so much at Chailey and it is apparent that she has so much more to enjoy here. As Jonathan says, “At Chailey everyone’s themselves, there’s no judgement, just kindness, cooperation and understanding.”