We want to support parents of children with disabilities, show them the role they play in their child’s early learning, create advocacy for the rights of children with disabilities and allow them a space to grow and nurture their own beliefs around disability so that they too can be a voice which breaks stigma and prejudice in the community.
In 2019 our home-based inclusion team decided to promote ‘giving a voice’ to parents of children with disabilities and so the Sinezwi philosophy was ‘born’.
This is Wendy’s story:
Wendy is a 27 year old mother living in KwaNzimakwe who was born and raised with her mom and 2 siblings in Gcilima, a neighboring tribal authority. Since an early age Wendy always wanted to be a mom as she loved holding children.
Before her son Sthelo was born Wendy didn’t know very much about disabilities. She would maybe see people in wheelchairs or walking with crutches and she would pity them. “I thought that disability was a punishment for something they had done wrong; why would God create someone like that?”
When she found out that she was pregnant she was excited and really hoped that her unborn baby was a boy. At that point she didn’t even think about her child having a disability.
When Sthelo was born there were some complications and he was kept in the hospital for almost a month afterwards. It was while Wendy was feeding him that she noticed that his head was ‘bigger than normal’. The Doctors at the hospital told her that Sthelo most likely had brain cancer and that he wouldn’t survive i.e. there was nothing she could do. She was sent home holding her newborn baby waiting for him to stop breathing at any moment. “I cried the whole way home with my baby, I felt so helpless”.
After a couple of visits to the clinic and then a visit to a private physician Wendy returned with Sthelo to the hospital where she was transferred to a specialist hospital in Durban; Sthelo was already 5 months old. At the Durban hospital Sthelo received scans and was given a shunt to remove the fluid from his brain which had cause the head to swell. He received a diagnosis, Hydrocephalus, and remained in the Durban hospital for 1 month under observation.
Wendy and Sthelo were sent home after their visit to the Durban hospital with instructions to return for check ups every six months. Their last visit was in 2017.
With the news that her child would in fact live and a diagnosis to work with, Wendy now had to begin the task of learning how to support her child. Under instruction of the hospital she started taking Sthelo every month for visits with the physio at the local clinic to help support Sthelo’s mobility and so that he could develop the strength to support his head. When Sthelo was about 6 or 7 months old she met Siyakwazi at the physiotherapy and realized that she needed support and allowed Siyakwazi’s team to come and support.
Click here to read about Sthelo’s success with therapy.
Wendy is very hands on with supporting Sthelo and that has been a huge benefit to his progress. She is still dealing with the reality that her son has a disability and some days are better than others. But ultimately, she loves her little boy and loves the relationship that they have developed. She sees being the mother of Sthelo as a privilege; “Maybe it wasn’t a punishment, maybe I was the chosen one to take care of Sthelo”.
Wendy feels like the opportunity to share her story might help other parents of children with disabilities find their own voice.