Can you tell us something about yourself?
My name is Deborah Ncube and I am 37 years old. I have four children, all boys, and I stay now in Jerera, Zaka. After my last pregnancy I gave birth to twins, James and Herbert. They are now seven years old. Herbert is in first grade at school and James stays at home with me. He has cerebral palsy.
Can you tell us something about your child?
On the second day after giving birth, a doctor doing rounds noticed that James had jaundice. He was taken to the neonatal unit where he was in phototherapy for eight days. The doctor informed me that James’ brain had been damaged and he would be slow in developing comparing to his twin brother.
When did you realize that your child was disabled? Was there someone who gave you information about the condition of your child?
When I went back home after being discharged, I noticed that James was slower than his brother, it took him a whole month before he could even open his eyes. During monthly visits to the local clinic one nurse referred me to Harare Hospital. At the hospital they sent me to the Children’s Rehabilitation Unit where I was told that James had cerebral palsy. When I asked what it meant, or whether he would be disabled, they said I should wait and see since it was too early to tell. I found out more about cerebral palsy by googling on the internet.
Why are you coming to the 3-day workshops for disabled children?
I learnt about the CP-Workshops in Ndanga from the rehab department at Musiso Hospital. James’ physiotherapist asked if I wanted to go with James, and I agreed.
How is your family/community supporting you?
In my community, disability is often attributed to witchcraft or some kind of curse from the ancestors. Therefore, community support is practically non-existent. I also don’t get any support from my own family.
What do the 3-day workshops for disabled children look like? What do you or your child learn?
At the workshops in Ndanga, mothers with children with disabilities meet for 3 days every month. We are taught how to take care of our children since they have special needs. We are also taught on how to feed our children and what to feed them so that they do not suffer from malnutrition. Rehab technicians asses our children and show us the exercises we must continue doing with our children at home. We also get different lectures on topics, which affect children who are living with disabilities. I remember one important lesson on behaviour modification, which was an eye opener to almost every parent, since we thought that because our children are handicapped they cannot be disciplined and so they are left to do whatever they please. As parents we get to share tips on how to look after our children. Mothers also get to share their stories and this really helps the parents and caregivers.
What do you expect from the rehab staff/the 3-day workshops for disabled children?
I expect rehab staff at the workshops to explore every possibility to be able to assist James to be mobile and independent. I also expect to learn different types of exercises to make his muscles strong. I also expect them to be quite honest even if sometimes the truth hurts.
Are you coming again? When yes, why?
I will definitely keep going to the workshops because they are helping James and me a lot. Since I started going to the workshops I have learnt of so many activities which I think will help James to get stronger. I am also better informed about my child’s condition and care. I also get a forum to ask any question in regards to James’ wellbeing.
Do you see any changes? When yes, which changes?
I see a lot of changes on my son. His arms are stronger, and he is learning to sit and can actually hold his head high. He is now toilet trained so I don’t have worry about napkins.
What do you wish for the future of the 3-day Workshops for disabled children?
I would wish to meet a speech-therapist at the workshop, to help James to start talking. I also wish we could have more on occupational therapy so that James can learn to use his hands and maybe be able to eat by himself. I also wish these workshops could carry on for a long time so that more and more children like James can continue to get assistance and support.