The extent to which children with CP are able to grow, play and learn depends heavily on the CP services that they, and their caregivers, have access to. In most rural CP clinics, children with CP deteriorate physically as they get older, especially those who are more severely disabled. Usually, only children who are more mobile or who have milder forms of CP remain in the same condition as when they started attending their clinic.
The outcome of children affected by CP becomes far more positive when:
- Skills and support are provided to rehabilitation staff
- Parents are empowered as a valuable resource
- CP clinics are restructured to allow for more treatment time for children with CP, and to create a stronger focus on developing the essential skills that a parent needs to care for their child.
Once parents/caregivers are equipped with the necessary skills, their children are able to grow with minimal or no deformity whatsoever, resulting in children and teenagers living without chronic pain. Through therapy, children are then able to improve in function, communicate better with their parents and be active participants in everyday life. Children attending our residential therapy programme improve considerably over the two week duration and parents/caregivers realise that their children have the potential to exceed their expectations. Following the programme, parents can highlight and describe their children’s achievements and the positive visible changes that have occurred over the two-week period.
Watching the transition that takes place in children, when their parents are given an opportunity to learn and apply their knowledge, is proof that children with CP possess great potential to grow, play and learn. While CP is a way of life and cannot be cured, we can create the opportunity for children to reach their full potential within a supportive environment.
Life’s joys and determined little spirits
Thato Mokhalane and his wonderful grandmother are a familiar sight in our Johannesburg Therapy Centre. It is the first day of the residential therapy programme and Thato walks into the therapy room, using every muscle in his body to walk forward. With difficulty, he bends over to pick up his left leg, slowly edging his way forward. The therapy room is buzzing with four parents and four children from Mohale’s Hoek, Lesotho, all waiting with excitement for the daily programme to begin.
It's time to begin! With his hand on his left leg, he moves towards a ball. He seems excited to be back in Johannesburg for two weeks of residential therapy. "I want to walk better,” he says with determination and sincerity in his quiet little voice.
Thato was born with CP. His mother died in 2010 and his father is absent in his life. He used to walk up straight until he was kicked in the knee at school two years ago. In the midst of all this hardship, Thato is a clever boy, and is determined to work hard in order to walk independently.
“I am a boy who is 10 years old. I am in grade two and have a problem with my left leg, I am unable to lift it up without using my hand. My hand is also not working very well. When I lift up my leg to walk I have to bend at my waist. I came here (Malamulele Onward, Johannesburg) to get help with all that and I hope I will be better when I leave here,” says Thato.
Over the course of the two weeks, Thato spent time receiving therapy. A significant improvement was seen in him and he managed to achieve all the goals he and his grandmother Matshepang set out to achieve. Thato’s goals were to improve his walking ability, use his left hand more during dressing and undressing as well as stand better… and he improved in all these areas.
Matshepang was happy to witness her grandson blossom during the two weeks of therapy. She expressed her gratitude for the experience and knowledge she gained: “Thato could not use his left hand to hold objects but now he has that ability as well as the ability to walk straight. These two weeks have meant a lot to me and my grandson because we both learned a lot. Thato learned how to walk better and how to use his left hand. I learned about CP and how to care for a child with this condition. I also know that CP is a way of life.”
Caregivers of children with CP are faced with difficult daily challenges, but it is the milestones that they overcome that encourage us all to pause and appreciate the remarkable courage the children and caregivers display. Each achievement is significant and is celebrated with joy. CP is nothing to be taken lightly, yet at the same time, it does not mean the end of life's joys and acknowledgment of great moments. All children with CP are able to grow, play and learn.