Eastern Cape father starts WhatsApp group for parents of children with disabilities
13 Dec 2020
By Aphiwe Bulo
A determined 37-year-old widower and father of three from rural Eastern Cape has set up a WhatsApp support group for parents that have children with cerebral palsy.
Sipho Ndamase from Ngolo village in Libode has two boys and a 10-year-old girl, Sinothando, who was born with cerebral palsy.
In May 2020, he created Our Hope Disability Group with 24 parents from Libode, Qumbu, Mqanduli and Mthatha to communicate, share ideas and discover common needs.
Ndamase came up with the idea to start the support group after attending a parenting workshop in Johannesburg in early 2020. He learned how to position, dress and play with Sinothando, and to understand when she is hungry or uncomfortable. He wanted to share his knowledge and skills with his contacts who did not have access to the same information. South Africa was still under level 4 of the lockdown when he created the group.
Ndamase met most of the group members such as Nomaster Dungulu when they would take their children for physiotherapy at Mthatha Hospital back in 2017. The parents would share their experiences of looking for the right special needs schools and caretakers that understood how to take care of the children.
Sinothando cannot speak or walk. More than 20 caretakers have resigned because they found taking care of her to be stressful and depressing. Her father says at schools in Mthatha and East London she developed sores on her head and broke both her arms and leg.
Ndamase says Sinothando now stays at home because children older than 10 years are not accepted in most special needs schools and boarding schools are expensive.
Dungulu has had similar experiences. She says her nine-year-old daughter, Oluthando, has changed schools three times because she was placed in wrong classes and therefore didn’t fit in. At one school the caretakers complained about Oluthando’sinability to feed herself and being a slow eater. She remembers being told, “Sorry sisi! Feeding your child will be too time-consuming. We will attend to her last.”
“As parents of children with disabilities, we want to fight for their rights”, says Dungulu.
A social worker at Tsolo special needs school, Lungiswa Mxinwa, says that it is important to know what cerebral palsy children like so that you can respond to their physical and emotional needs.
“I wish that a school could be opened, to train and employ parents that have children with cerebral palsy as caretakers because we are the only ones who understand the needs of our children,” says Ndamase.