Jacob

Jacob is 18 years-old and has been attending Chailey Heritage Foundation since he was just 17 months-old, after being diagnosed with Cerebral Palsy and Dystonia. Now with just one year of school left, he accesses a wide range of the Charity’s additional ‘wrap-around’ services including Pathways, the LSC (Leisure and Skills Centre), and holiday clubs.

Building strong bonds with dedicated staff

An outgoing young man, Jacob loves films, singing and music, particularly Little Mix! He loves to be out and about, socialising and having fun and has a strong bond with Jasmine, who has been supporting him for the last three years through the Pathways service. “Jacob likes being with people his own age, like any 18 year-old. I ask him what he wants to do, and he blinks once for yes and twice for no. One day we might be visiting the beach or going to the cinema, the next we could be shopping, trying on sunglasses and picking out clothes as Jacob loves fashion.”

Jasmine explains that activity needs to be balanced with resting, as getting tired can make Jacob’s conditions worse. “The cerebral palsy and dystonia mean that Jacob can’t get his body to move when he wants it to. If he is having a dystonic episode, the muscle spasms are very strong, and he will always turn his head to the right. This can put a lot of pressure on his body and can cause him pain when his muscles go into spasms, which is why it’s important to help Jacob feel as relaxed and comfortable as possible.”

Mum Karen, and Dad Marios explain that structure and routine are key to helping with this - “Having Jasmine support Jacob daily and everything on one site at Chailey Heritage helps Jacob’s emotional and physical wellbeing, because he likes consistency and structure.”

Integrated offering supports Jacob’s mental and physical wellbeing 

Although each of the services at Chailey Heritage have their own unique offering, the support they offer is so integrated that it can be hard to tell the difference between them, which can be beneficial for individuals like Jacob as it creates a sense of continuity and routine which can be very reassuring. Jacob’s parents reflect, “We feel so fortunate that we found Chailey Heritage from the start, from meeting other parents, to having everything in one place – consultants and nurses through clinical services, physiotherapists, teaching staff at school, and even engineers who can fix mobility issues with Jacob’s wheelchair.”

Building confidence and independence out in the community

Pathways is a service that assists people like Jacob in their homes as well as out in the community, and transports them between both. The service supports Jacob before and after school, on weekends and in holidays.

Jacob’s parents explain that Pathways has been invaluable in helping Jacob access evening activities like Scouts, which he really enjoys. “It means that Jacob can be more independent, doing what he likes with his time, while giving us peace of mind knowing that he is safe and well looked after. It means we can switch off for a bit and get on with other things.”

Flexible experiences tailored to individual’s needs

The clubs are tailored to individual’s interests and needs and Kerrie, who runs them, encourages feedback so that she can plan the sessions to be as fun and engaging as possible.

The LSC offers a variety of daytime sessions including gym, spa, swimming, sauna, rebound therapy, cookery, art, and a sensory room and can be booked online. Jacob has attended family fun days at the LSC with his younger sister Lily, 12, who has enjoyed art and cookery sessions with him.

The Hub is the area where Jacob can go in between LSC sessions to get out of his wheelchair and relax on the soft floor mats or partake in activities like music and singing.

Not a ‘one size fits all’ approach

Kerrie explains that services can be tailored to individual needs, as the Charity understands that there is a no ‘one size fits all’ approach because each individual and family has different and unique needs.

This flexible approach is beneficial to families like Jacob’s - Karen and Marios mention that they are thinking of trying the residential service at the bungalows on-site at Chailey, to give Jacob more independence and social time. “It’s about trying to give Jacob as much variety as possible and opportunities to mix with his own age group.

Jacob has another year left at school, but as restrictions ease and more of Chailey Heritage’s ‘wrap around’ services reopen, opportunities for socialising, confidence building and having fun will hopefully be available and help people like Jacob transition to the next stage of their lives.