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20 October 2025 | Story Andre Damons | Photo Supplied
Down Syndrome

As South Africa marks Down Syndrome Awareness Day on 20 October, it is worth pausing to celebrate the incredible children who light up our lives and the parents who walk this journey with them. Down Syndrome is the most common chromosomal disorder, causing intellectual disability. 

According to Down Syndrome South Africa, one in every 600 babies born in developing countries has Down syndrome. Data on the prevalence in South Africa remain limited, however, earlier estimates suggest about one in every 770 births. Although Down syndrome is not curable, children with the condition have many abilities and strengths. It is, therefore, vital that families engage in interventions that help children reach their full developmental potential. 

Dr Olive Khaliq, Senior Lecturer in the Department of Paediatrics and Child Health at the University of the Free State (UFS), says most interventions rightly focus on the child, but there is growing recognition that parents are just as central to their children's progress. The home is the first and most consistent environment where development occurs. Parenting a child with Down syndrome can, however, be influenced by the social context. 

 

Empowering programme 

“In South Africa, cultural beliefs and community attitudes often shape how families cope and seek support. Some parents fear disclosing the child's disability due to fear of being judged or the long-standing myth that Down syndrome is a curse or a punishment.  

“This can lead to isolation or delays in accessing interventions that could make a difference. Empowering parents with knowledge and practical tools are therefore essential, not only for their children's development, but also for their own well-being,” she says. 

A remarkable example of such empowerment is the Developmental Resource Stimulation Programme (DRSP), a home-based programme designed by Dr Dorothy Russell from the Department of Paediatrics and Child Health. The DRSP, designed for children with Down syndrome from birth to 42 months, combines structured play and guided parent-child interaction, helping parents to stimulate their child's cognitive, fine-motor, gross motor, and language development using everyday household items such as teaspoons, tumblers, and face cloths. Previous quantitative research shows that children whose parents participated in the programme made measurable developmental gains. 

 

Feedback from parents 

In 2024, Drs Khaliq and Russell, together with Prof Gladys Kigozi-Male, Associate Professor in the UFS Centre for Health Systems Research and Development, received an interdisciplinary grant from the UFS to explore the experiences of parents regarding the DRSP. They engaged 31 parents of children with Down syndrome in individual interviews and focus group discussions. According to Kigozi-Male, findings revealed overwhelmingly positive experiences. Parents reported feeling more capable and more connected with their children. “One parent shared: ‘It [the DRSP] helped me to become closer to her, and to know her better, and to know what she’s capable of … my child can do anything that we wanted her to do …  she’s capable of everything, and that if we follow this programme, she [will] become very strong and capable,” said Prof Kigozi-Male.   

Another parent reflected on the knowledge gained: “… the knowledge that I didn’t have before …  as a mother of a Down syndrome baby – but for any mother …  I have learned so much, and it is what any mother should know …” Parents also noted visible improvements in their children’s development, particularly in muscle strength, crawling and walking with one parent explaining “It really changed a lot …  my child's neck was not okay, so the programme taught us how to train the neck muscle. Even when they started walking or crawling, it really helped a lot …” 

Another parent highlighted how the programme strengthened their confidence as caregivers saying “… I don't think we would have come this far without the programme because it helped us understand my child … Without the programme I don't think he would have been so strong because we wouldn't have known how to help him ...”

The DRSP, explains Dr Russell, is just one example of what can happen when parents are treated as active partners rather than passive recipients of care. Going forward, it is important that parents' voices continue to shape how interventions are designed and delivered. Their lived experiences are powerful sources of knowledge on what works in real settings.  

“As we commemorate Down Syndrome Awareness Day, let's remember that inclusion begins with understanding, and understanding grows when we listen to families, parents, and children who remind us that every life matters,” concluded Dr Khaliq. 

News Archive

Eusebius McKaiser talks about the magic of books
2013-03-19

 

Eusebius McKaiser
Photo: Johan Roux
19 March 2013

If you want to turn around this country in terms of the rot in education, you have to start reading. You have to read for your degree."

This was the message from writer and political analyst, Eusebius McKaiser, at a public lecture hosted by the UFS Library and Information Services to celebrate South African Library Week.

Addressing the audience that consisted mostly of students, McKaiser, author of “A Bantu in my bathroom,” said it is not too late to start reading.

"We claim we are too busy as adults, but what is the opportunity cost of not reading? I think we lose our humanity, our sense of awe in the world around us when we stop reading as adults. Instead of saying we are too busy, we will do well to ask ourselves what is the cost of no longer reading as much as we did when we were children."

Reading from some of his favourite books, McKaiser spoke about writing techniques and the magic of books. He read excerpts from JM Coetzee's book “Disgrace,” which he considers to be the most important South African novel. He also read paragraphs from books by Rian Malan, James Baldwin and K Sello Duiker – calling the latter a genius.

Reflecting on the role of fiction, McKaiser said the genre is misunderstood and not utilised sufficiently by academics. "We see fiction as something restricted to the English Department or literary departments. I think fiction can be used as a tool in many departments in the humanities. It gives more real material for exploring complicated questions in the humanities and thought experiments that resemble life."

McKaiser also discussed the role of librarians and writers, saying writers should write what they like, but should not ignore the context. "As academics, librarians, teachers, we have to write for the context in which we teach. We have to order books for the context in which we are librarians and as academics we must not write textbooks for students who live in New York. We have to write textbooks for students who come from townships.”

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