Cerebral palsy and the road to independence

Jai Jai Grant-Said

One student’s story of life with cerebral palsy and the fight to become more independent

Nineteen year old Jai Jai Grant-Said is about to leave full time education, having studied at Treloar School and then Treloar College for the last five years. He has completed a Diploma in Vocational Studies and a one-year course in Customer Service, which he studied at nearby Alton College.

Jai Jai has now decided to return home to London, where he hopes to study creative writing at his local college. He wrote his first play when he was just seven years old, and has ambitions to become a children’s writer. He is currently writing his first novel about a boy called Justin who, like Jai Jai, has cerebral palsy.

At the age of seven I wrote my own play. It was about rabbits and squirrels. The plot involved men capturing some of the rabbits and squirrels. They were kept in a building but they managed to escape from the men. I decided to publish a few copies and my stepfather did the design for the book cover. The laminated copy has a rabbit and my name on it. We sold six copies to my relatives and I was very proud of myself. It was at that moment that I decided that I wanted to be a book writer.

[When I am writing] I can escape from reality to go into my own world. I want to publish my work because I want to share my imagination with others.

Jai Jai has spastic quadriplegia, a type of cerebral palsy in which all four limbs are affected. Jai Jai is in a wheelchair and requires help with various daily activities, such as bathing. During his time at Treloar’s, he has been receiving specialist residential care; however, through lots of hard work with his therapists, he is now able to move towards an independent life.

Jai Jai’s key worker, Sue, meets with him at least once a week to discuss the short-term and long-term goals he can work towards. All these goals are focused on achieving independence.

Physiotherapy is a core area of treatment for cerebral palsy, and one of the main aims of Jai Jai’s work with physiotherapist Dee has been to prevent or limit contractures and limb deformities that can occur with his form of cerebral palsy. It’s been a real team effort, and Dee believes that Jai Jai is now able to carry out a great many movements independently. He can now feed himself, transfer himself out of his wheelchair and walk a short distance using a Kaye Walker.

Jai Jai also works regularly with Maggie, an occupational therapist. In his first year at College, he learnt skills such as accessing and setting up a computer, producing his work independently, and managing his wheelchair on the road. In his second year, his abilities have been extended to include skills like withdrawing money from a cash point, booking local travel, going shopping and using domestic appliances. With other students he has learnt how to plan a weekly menu, do his own laundry and cook basic meals. All of these life skills have helped Jai Jai to gain confidence and become more independent.

Jai Jai has a slight stammer, which is not necessarily a result of cerebral palsy, and he has some difficulties maintaining pitch and volume in his voice. He worked regularly with his speech and language therapist, Caroline, during his first year at college. This enabled him to develop techniques to manage his speech difficulties independently. As there are some speech sounds he cannot hear, Jai Jai has hearing aids. However, he has been given all the information he needs to make an informed decision about their use and he makes his own choices about when and where he is comfortable using them.

Last year, Jai Jai undertook a seven month work experience placement at his local Sainsbury’s. He worked for five hours every Wednesday on the customer services desk and at the checkout. Jai Jai acknowledged that he wasn’t as fast as his colleagues and sometimes people had to ask him to repeat what he was saying. He took the feedback he received constructively, but he realised that this was not the role he wanted on a full time basis: “It would be too boring!” he said. “However, once I am in London, I would like to have a part-time job at my local Sainsbury’s.” In fact, Alton Sainsbury’s have already agreed to help Jai Jai in his application to work at his local London branch, and they have promised him a good reference.

Jai Jai’s next challenge is making his London home suitable for his needs. His walking frame is too big to use upstairs; he has to grab on to furniture when he needs to walk and often crawls in between rooms. With help from his dad he is therefore moving his bedroom downstairs to the conservatory. They are also adding a front door ramp to enable him to enter the house independently, as relying on his family to get in and out can be frustrating, especially when it is raining.

Jai Jai is nervous about leaving college, as he knows life in the wider world will be challenging and he will really miss all the friends he has made. When asked whether he felt he has benefited being at a school and college specifically for young people with physical disabilities, Jai Jai was quite candid:

Treloar’s helped me to grow up. It helped me to be an adult and more independent. Regarding my disability, CP, Treloar’s has helped me to be more positive and speech and language therapy has helped me to get rid of my stuttering.

So what would Jai Jai say to other young people with cerebral palsy? “Don’t be negative because you can do what you want to do, as long you have the mind and the determination to achieve it. Be positive and you will be a winner.”

Further information
Treloar College is in Alton, Hampshire: www.treloar.org.uk

Tim Harding
Author: Tim Harding

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