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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

Doing what must be done – Fourth Reconciliation Lecture by Colm McGivern
2015-03-17

Colm McGivern
Photo: Johan Roux

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Fourth Reconciliation Lecture: Audio

McGivern: speech (pdf)

The UFS Annual Reconciliation Lecture brings leaders, scholars, and the broader community together in a shared vision for social change and conflict transformation. This event is organised by Prof Pumla Gobodo-Madikizela, Senior Research Professor in Trauma, Forgiveness and Reconciliation Studies. In 2012, Nadine Gordimer, Nobel Prize Laureate for Literature, was the first speaker to deliver the lecture. This year, at the Fourth Annual Reconciliation Lecture held on the Bloemfontein Campus, Colm McGivern, Director of the British Council in South Africa, continued the legacy.

Doing what must be done
'I get down on my knees and do what must be done
And kiss Achilles' hand, the killer of my son.'
(Ceasefire by Michael Longley)

Using this poem to powerful effect, McGivern showed what reconciliation asks of each and every citizen: to do what must be done. “I think that peace and reconciliation are mutually dependent,” he said. “You can’t maintain one over the long run without attending to the other.”

South Africa’s history has tracked along a similar path to that of Northern Ireland. “And lessons from other places can be powerful and instructive,” McGivern said. Sometimes reconciliation needs a focal point for people to clearly see its power, as Madiba has for South Africa. But at other times, reconciliation needs everyday citizens to “kiss Achilles’ hand’”.

McGivern mentioned Candice Mama and her family, who  have recently forgiven Eugene de Kock,. Or as Gordon Wilson did after his daughter, Mary, died holding his hand in the 1987 Enniskillen bombing in Ireland. In a TV interview mere hours later, Wilson forgave the killers of his daughter, and  hope rippled across Ireland.

Learning from others
“People’s capability,” McGivern said, “to reconcile their own differences, however stark, can be boosted by learning from others in other places, internationally or perhaps just beyond their own identity group.” A powerful truth now being pursued in a joined initiative between the British Council and Teaching Divided Histories.

As an example, McGivern referred to the short film, ‘In Peace Apart’ where one Catholic and one Protestant girl decide to swop school uniforms. Harnessing the potential of moving images and digital media, the initiative enables teachers to explore contentious issues of history and identity in the classroom. This international field of conflict education draws lessons “from activities in Sierra Leone, India, Lebanon, and, of course, South Africa.”

Resuscitation of the national spirit of magnanimity
Here in South Africa, Archbishop Desmund Tutu has “called for a resuscitation of the national spirit of magnanimity and common purpose”, McGivern quoted. In the book, 80 Moments that Shaped the World, South Africa appears four times, McGivern pointed out. And as Archbishop Tutu wrote in the foreword of the book, “no act is unforgivable; no person or country is beyond redemption and the world needs more people to reach out to one another.”

 

For more information or enquiries contact news@ufs.ac.za.

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