Big Sky and Cerebral Palsy in Nqutu
By Malamulele Onward and Tracy Smythe
Malamulele Onward is a non-governmental organisation which provides specialised therapy (physiotherapy, occupational therapy and speech therapy) services, equipment and caregiver training to poorly -resourced rural areas of South Africa and other African countries where children severely disabled by cerebral palsy have little or no access to rehabilitation therapy and equipment. Cerebral palsy literally means ‘brain paralysis”. The child has had some kind of damage to their brain whilst their brain was still growing and developing. This damage mainly affects the parts of the brain that control movement. All children with CP have difficulties moving because the messages that the brain sends out to the muscles to tell them what to do are disordered and confused. This includes the muscles used for eating, drinking and talking, which is why many children with CP have difficulty with eating and drinking, and their speech is not clear.
Children with cerebral palsy living in poor and rural areas in South Africa are a particularly neglected and underserved group. Although they qualify for government assistance in the form of “Care Dependency Grants”, this money is usually the family’s only source of income and not all the money is spent on the child. Caring for a child with cerebral palsy involves many additional costs not associated with non-disabled children and the children remain dependent on their mothers for feeding, bathing, dressing and toileting, placing a heavy burden of care on mothers. Mothers report feeling isolated, lonely and depressed in coping with day-to-day living. Families and caregivers have little or no access to support services, such as peer support groups and networks. Studies have shown that less than 30% of children who need rehabilitation in South Africa actually receive it. Not only is transport to the hospital costly because of the distances involved, but once people get there they find that there are not enough therapists to help them, and the therapists may have little or no experience in working with children with cerebral palsy. In addition, a lack of financial resources at the hospitals means that there are long waiting lists for basic equipment such as wheelchairs, buggies and standing frames. As a result children up to the age of 14 years are still being carried on their mothers’ backs.
Malamulele Onward has pioneered a model which matches the available skills in the country with the needs of children with cerebral palsy and their carers in under serviced rural areas. Following are touching excerpts from blog articles written by Tracy Smythe, a physiotherapist working in Zimbabwe who volunteered as part of a two week Malamulele treatment outreach in Nqutu, Kwazulu Natal recently:
“My gall bladder is doing somersaults. I am apprehensive. A team of paediatric physiotherapists occupational and speech therapists, translators and parent facilitators are involved in treating over eighty children with Cerebral Palsy for two weeks in Nqutu, Kwazulu Natal. I volunteer for the first week. It will be the only therapy block that the children receive this year.
I have come because I have something to offer. We can physically impact children, yet there is more. There is the yearning that dawns in a mother’s eyes as she begins to see her son’s potential. There is the empowering of families as they broaden understanding of their individual child. There is the shriek of delight from an eight year old who recognises himself in a mirror for the first time. There is the silent tear that runs down a cheek when a baby sits and uses both hands to bang a toy. There is the slackening of a jaw in astonishment when a severely stiff infant is able to be wrapped on grandmothers back. There is the dimple of a smile when a toddler makes eye contact because her head can now be still. There is the deep resonating whisper of a father as his daughter snuggles into his shoulder, exhausted from therapy. There is contributing to the tools a child can use to communicate. There is parental pride. There is a rise in stance. There is a room infused with love. There is a comment that ‘I am amazed that anything good can happen to me.’ There is a grateful spirit. There is a determination to help their child. There is hope.
We treat the children in groups. It is fascinating to watch their characters emerge and the interactions in their clusters of two or three. Balloons pop. Water in buckets splash. Toys bang. Babies cry. Toddlers giggle. Each child is fitted for equipment. It is adjusted, molded, re-formed and modified until it suits perfectly. My children, who are particularly stiff, all complete a mobilization programme to my singing. None of them are verbal communicators yet when I stop they burst into cackles of laughter. One of my two year olds will not let me touch him. He clicks at me in annoyance. We complete therapy through his mum. Her handling is beautiful. At the end of the session he waves goodbye with a big grin. I suspect he is happy to see me go.
The day is demanding. I push my children. I push my parents. I push myself.
I ask if one of the Gogos (grandmother) has any questions. She says no, but thank you for treating us like this. Like we are more than just something. And that’s just it. It got me thinking about human dignity. The impact of an individual, the perceptions of an outsider. I pass her in the corridor hours later. She is repeating the activities that we practised earlier. Her wrinkles are fissures. Her eyes brighten when she notices me. She is grateful to be seen. She is proud to be able to help her grandchild. He is nearly as tall as she is.
Our evenings are spent preparing home programmes and follow up objectives. I am surrounded by clinicians with a solid work ethic and a love for children. I am tired. I am in a parallel world. I have no phone. We dodge cows in the car park outside of the local store. Traffic crawls. No one is in a hurry. It is grounding and yet life continues outside of this week of outreach. As we farewell, the gogos start a thank-you farewell chorus. The baritone of the men join. Children sit on laps. They squirm and sleep and flop and stiffen. The group forms a circle. Tears prick my eyes. A whistle is blown in my ear”.