Sthelwesihle Sikobi is 3 years old, he has Congenital Hydrocephaly, a condition whereby a person is born with excessive cerebral spinal fluid on the brain. For many children the barriers experienced because of this condition can both be physical and cognitive. In Sthelo’s case strength and mobility have been major concerns, he is also delayed in his speech and language. Sthelo is unable to play outside or interact with other children. These barriers to learning have prevented him from accessing a mainstream schooling environment.
Sthelo’s mom, Wendy, has experienced many challenges herself through managing Sthelo’s condition. She has had to stop her studies and is unable to look for work because her son needs round the clock attention and care.
Siyakwazi’s NCB team visits Sthelo and Wendy an average of two times a week. The visits include learning and play activities as well as physiotherapy sessions; mobility exercises and physiotherapy are necessities if Sthelo is to improve. “When he first joined Siyakwazi in 2016 he was unable to lift or hold his head,” explains Thuwe Jula who manages Sthelo’s home visits. “Wendy had given up on taking Sthelo to physiotherapy because she was not seeing any improvement.” Grace Hughes, a local physiotherapist and friend of Siyakwazi assists the NCB team with quarterly physiotherapy interventions for some of the more severely disabled children. Grace was able to share exercises that Wendy could do with him every day and the improvement has been remarkable.
“Sthelo can now sit by himself for short bits of time, he has good eye contact, he can identify his mom and he can roll or pick up his head,” states Thuwe. The improvements in his mobility are because of specific targets and goals set for him in his therapy programme and that they are happening on a daily basis by his Mom. This has given the teaman opportunity to move forward with language and speech interventions. His mom, on seeing progress, is becoming more motivated to get involved in the process. Siyakwazi’s programmes prioritise parental involvement wherethe active involvement of a parent or carer where there was once (apathy) demonstrates the programme’s ongoing success and impact.