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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

SA cannot sustain momentum - Boesak
2010-09-02

Photo: Stephen Collett

South Africa finds it increasingly difficult to live up to the challenges facing it as a nation because of its failure to meet its democratic ideals and possibilities, peace and lack of self-belief.

This was according to renowned cleric and former political activist, Dr Allan Boesak, who recently delivered the CR Swart Memorial Lecture, the oldest memorial lecture at the University of the Free State (UFS). His lecture was on the topic Creating moments, sustaining momentum.

He said South Africa had plenty of opportunities to show the whole world what was possible if all the people of this country joined hands and worked together to build a truly united society. However, he said, the country somehow invariably contrived to find its way out of these wonderful possibilities.

He cited events of historical significance like Codesa, the inauguration of Nelson Mandela as the first democratic president of South Africa, the assassination of South African Communist Party leader, Chris Hani; and the rugby and soccer world cups.
To drive his point home about this dismal failure of the country to “sustain momentum”, he alluded to the current public servants’ strike that is gradually crippling public service.

“The public servants’ strike was neither unexpected nor is it completely unjustifiable. Most of us have understanding for the frustration of teachers and health workers. Their demands resonate with most of us, and I think that it is scandalous of SACP fat cats to tell workers to “stop crying like babies,” he said.

He also added to the criticism of the much-maligned decision of the government to spend billions of taxpayers’ money to purchase weapons when there was “no discernible military threat” to the country. He said the greatest threat to the security of the country was poverty, inequality and social cohesion.

“As for the argument that arms sales bring in foreign exchange – how can we be instrumental in killing the poor elsewhere with the intention of feeding our poor, and then our ill-gained profits feed only the already well-fed?” he asked.
“Can we see the hopeless contradiction, the total impossibility of being both the apostle of peace and a merchant of death?”

He also lambasted the Black Economic Empowerment (BEE) policy of the government which he said benefited only those connected to the political aristocracy.

“It couples with the unashamed, in-your-face display of wealth by the privileged elite in this country, the crass materialism of the so-called “bling generation”, and the casual carelessness with which promises to the poor are given and treated. It is only the public symptom of the deep-seated scorn our political elites feel for the poor,” he said.

He said the government’s disdain to the poor was “setting fire to our future”.

“The anger of people on the ground can no longer be denied or ignored, and little by little, the leadership articulating and directing this anger is being estranged from politically elected leadership, and even more disturbing, from our democratic processes,” he said.

He concluded that the country’s difficulty in dealing with race and racism was putting the reconciliation process kick-started by Mandela just over a decade ago, under a threat.
 

 

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