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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

“To forgive is not an obligation. It’s a choice.” – Prof Minow during Reconciliation Lecture
2014-03-05

“To forgive is not an obligation. It’s a choice.” – Prof Minow during the Third Annual Reconciliation Lecture entitled Forgiveness, Law and Justice.
Photo: Johan Roux

No one could have anticipated the atmosphere in which Prof Martha Minow would visit the Bloemfontein Campus. And no one could have predicted how apt the timing of her message would be. As this formidable Dean of Harvard University’s Law School stepped behind the podium, a latent tension edged through the crowded audience.

“The issue of getting along after conflict is urgent.”

With these few words, Prof Minow exposed the essence of not only her lecture, but also the central concern of the entire university community.

As an expert on issues surrounding racial justice, Prof Minow has worked across the globe in post-conflict societies. How can we prevent atrocities from happening? she asked. Her answer was an honest, “I don’t know.” What she is certain of, on the other hand, is that the usual practice of either silence or retribution does not work. “I think that silence produces rage – understandably – and retribution produces the cycle of violence. Rather than ignoring what happens, rather than retribution, it would be good to reach for something more.” This is where reconciliation comes in.

Prof Minow put forward the idea that forgiveness should accompany reconciliation efforts. She defined forgiveness as a conscious, deliberate decision to forego rightful grounds of resentment towards those who have committed a wrong. “To forgive then, in this definition, is not an obligation. It’s a choice. And it’s held by the one who was harmed,” she explained.

Letting go of resentment cannot be forced – not even by the law. What the law can do, though, is either to encourage or discourage forgiveness. Prof Minow showed how the law can construct adversarial processes that render forgiveness less likely, when indeed its intention was the opposite. “Or, law can give people chances to meet together in spaces where they may apologise and they may forgive,” she continued. This point introduced some surprising revelations about our Truth and Reconciliation Commission (TRC).

Indeed, studies do report ambivalence, disappointment and mixed views about the TRC. Whatever our views are on its success, Prof Minow reported that people across the world wonder how South African did it. “It may not work entirely inside the country; outside the country it’s had a huge effect. It’s a touchstone for transitional justice.”

The TRC “seems to have coincided with, and maybe contributed to, the relatively peaceful political transition to democracy that is, frankly, an absolute miracle.” What came as a surprise to many is this: the fact that the TRC has affected transitional justice efforts in forty jurisdictions, including Rwanda, Sierra Leone, Cambodia and Liberia. It has even inspired the creation of a TRC in Greensborough, North Carolina, in the United States.

There are no blueprints for solving conflict, though. “But the possibility of something other than criminal trials, something other than war, something other than silence – that’s why the TRC, I think, has been such an exemplar to the world,” she commended.

Court decision cannot rebuild a society, though. Only individuals can forgive. Only individuals can start with purposeful, daily decisions to forgive and forge a common future. Forgiveness is rather like kindness, she suggested. It’s a resource without limits. It’s not scarce like water or money. It’s within our reach. But if it’s forced, it’s not forgiveness.

“It is good,” Prof Minow warned, “to be cautious about the use of law to deliberately shape or manipulate the feelings of any individual. But it is no less important to admit that law does affect human beings, not just in its results, but in its process.” And then we must take responsibility for how we use that law.

“A government can judge, but only people can forgive.” As Prof Minow’s words lingered, the air suddenly seemed a bit more buoyant.

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