Jack’s story about education
Jack is an 18 year old student at St Margaret’s, The Children’s Trust’s on-site school for children with profound and multiple learning disabilities (PMLD). He is a happy young man who leads a very full, active life but this was not always the case.
When Jack started at St Margaret’s in 2001 he was bright and alert, but as he grew his cerebral palsy made his muscles very tense and his body began to curl into itself. The school’s physiotherapy team put in place a programme to help manage his posture, but as Jack became taller and heavier the curve of his spine began to seriously affect his health; squeezing his vital organs, causing frequent infections and digestive problems and meaning he could not tolerate sitting in his wheelchair for very long. This meant that he was unable to take part in class activities or go out on school trips.
The Children’s Trust regularly holds a joint orthopaedic clinic with a hospital consultant. The clinic had been reviewing Jack’s posture since he started at the school. The clinic discussed whether Jack’s parents should consider allowing him to have a spinal fusion operation to improve his posture and ease the pressure on his internal organs. It is a major operation – two metal rods would be inserted along Jack’s spine and some vertebrae fused together but after much consultation between his parents, the school’s nursing and medical staff and physiotherapists, it was agreed that this was the best course of action.
Jack had to go through a six hour operation and was expected to make a slow recovery from the surgery. But his mum saw the difference it had made straight away. Jack had never been able to hold his head up and sit upright before but now he could.
Following the operation, Jack’s tolerance for sitting in his chair was gradually increased until he was able to go on school outings with his classmates. His first class outing was to Brighton Pier and Jack really enjoyed it – the loud music, flashing lights and vibrations of the fairground rides rumbling past made it an experience for all the senses.
The school speech and language therapist worked with Jack to reintroduce him to eating again, starting with small tasters to allow his mouth to get used to the feeling of food and to stimulate his swallowing reflex. Jack was soon swallowing really well and last year he was able to eat Christmas dinner with his family which was a remarkable milestone.
The way that the school is able to meet Jack’s health, educational and social needs in a holistic way has greatly benefited Jack and his family. Jack is now able to lead a very full life. He never misses school and loves all the class activities and outings.
Jack’s mum says
‘We know that Jack is receiving the best possible care and education at school and having a wonderful time. Jack is happy and we are too’
Note: Jack’s story is taken from The Children’s Trust Annual Report. Jack’s family and The Children’s Trust have kindly given permission for us to use it here.
