As his parents waited, hoping to see Sonny meet key milestones, they soon started to see how cerebral palsy had affected him, with stiff arms and his fingers clenched around his thumbs. His head was floppy pulling his body forward, so much so that when he was in his buggy people would ask her if he was asleep. Sonny couldn’t sit independently, or crawl. He had problems with his eyes as well as heightened sensitivity in his hearing, which made loud environments upsetting and incredibly scary. Sonny’s parents, Adrian and Lou were desperate to help their son but felt lost, isolated and frustrated, feelings compounded by the clinical monologue delivered by health care professionals. “Every professional we met told us the worst-case scenario. A phrase we heard all too often was Sonny would not be able to…we needed a little hope and normality in our life and in Sonny’s life.”
Then the family heard about Pace, a local school for children with cerebral palsy, in nearby Aylesbury. At the age of four, Sonny started at Pace. He sat in his wheelchair, arms stiff and thumbs still captive inside his fingers. He couldn’t make eye contact or see the world around. His cerebral palsy impaired his ability to chew and swallow so that he could still only eat pureed food. Within six months, after working with the Pace’s transdisciplinary team on a bespoke set of education and therapy goals, the difference in Sonny was already very significant. His posture had improved, and he had developed the strength to hold his head up independently. He could now connect with the people around him and the effect on his family was transformational. As Lou says, “I could look in his eyes and talk to him and he could show me that he understood! The world had opened up for Sonny: he could access education, he could make friends and we could introduce solid food and teach Sonny how to swallow safely.”
At Pace Sonny is learning the curriculum, he is learning life skills, gaining independence, but most of all he’s being a child. Adrian and I are so grateful to everyone who works at and supports Pace. We will be forever grateful.
Sonny is now eleven years old. His head control is excellent, and he is able to sit independently on a backless bench. His arms and hands (through great effort) are under his control and he has the ability to grasp items and has learnt to feed himself! Sonny has developed his communication skills and progressed onto a specialist “switch scanning”. communication device. By selecting categories with his head and then navigating to words to activate a computer-generated voice, he can have choices, independence and say what he wants to say. “He can tell me what he wants, how his day was and most importantly how he’s feeling. It amazes me that he has learnt to use such a complex piece of technology!”
Sonny enjoys his new-found independence, “He loves being on the floor. He crawls and rolls around the house, taking himself off to bed if tired, or to get his computer or toys. He uses switches (special buttons programmed with instructions) to make choices and move his chair around. I love how much freedom he has now, and so does Sonny.“
Lou goes on to say, “The approach Pace takes with the children is a holistic one and there is a synergy that really works. Each classroom has a team of transdisciplinary therapists and teachers all trained to deliver aspects of physiotherapy, conductive education, occupational therapy, sensory integration and regulation, and speech and language
therapy, including eating and drinking programmes. And every child has access to a whole range of relevant therapies and education every day!”
Sonny has his own programme which is drawn up by teachers and therapists, with goals set in conjunction with his parents to ensure that they are realistic and achievable. These are blended together and delivered over a period to reinforce his learning and ensure that he benefits from the repetition of the exercises to give him a chance to gain control of his body and master new skills. “The staff and the children work tirelessly together. Their patience, dedication and commitment are relentless. Sonny has achieved much more than we thought possible.”
Real life stories
Read some inspirational stories on how our services have impacted the lives of children and families.