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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

Dialogue between Science and Society series looks at forgiveness and reconciliation
2013-03-24

 

Taking part in the discussion on forgiveness and living reconciliation, were from left: Olga Macingwane, a survivor of the Worcester bombing of 1993; Dr Juliet Rogers, a Scholar on Remorse from the University of Melbourne in Australia and Dr Deon Snyman, Chairperson of the Worcester Hope and Reconciliation Process.
Photo: Mandi Bezuidenhout
24 March 2013

How do you, as a mother who lost her only daughter, forgive the man who claimed responsibility for the attack that killed her?  How do you forget his crime while travelling with him across the world?  

These were some of the questions posed to Jeanette Fourie at a Dialogue between Science and Society series on forgiveness and living reconciliation. Jeanette, whose daughter Lyndi was killed in an attack on the Heidelberg Pub in Cape Town in 1993, was one of three people telling their stories of forgiveness while dealing with traumatic experiences. 

Sitting next to Letlapa Mphahlele, the man who owned up to the attack that killed her daughter, Jeanette spoke about their story of forgiveness traveling the world together, spreading the message of forgiveness and conciliation. 

"Don't ever think you can forget, because that’s not possible. What you do with the pain is to find peace, and that's what forgiveness does. Forgiveness allows you to stop all the dialogue in your head on why he did it. You don't forget, you confront it and you deal with it." 

Letlapa, Director of Operations of Apla, the military wing of the PAC at the time of Lyndi's death, spoke about dealing with the response to his crime. "Sometimes you wish that you were not forgiven, because now you have the great burden of proving that you are worthy of forgiveness."

Also telling her story of forgiveness was Olga Macingwane, a survivor of the Worcester bombing of 1993 in which four people were killed and sixty-seven others injured. Four people were sent to prison. In 2009 Olga met one of the perpetrators, Stefaans Coetzee, and what came out of that meeting, is her story. 

"When I met Stefaans I was very angry, but when you sit down with somebody and listen to him or her, you find out what the reasons were that made him or her do something. I can say that I forgave him." 

Facilitating the conversation, Prof Pumla Gobodo-Madikizela, Senior Research Professor on Trauma, Forgiveness and Reconciliation, said the seminar was meant to get in touch with the truth that forgiveness is possible. 

"Before we had the Truth and Reconciliation Commission (TRC) in South Africa, the experts always said that forgiveness was not possible in these stories of the past. And then the TRC came into life as a response to mass atrocities. For the first time in the history of these traumatic experiences, of political traumas, we witness something that we have never seen.  Even us on the TRC, although it was framed as reconciliation, we never imagined there would actually be stories of forgiveness emerging out of that process, and then we witness that this too is possible." 

Others who took part in the two-hour-long seminar, were Dr Juliet Rogers, a Scholar on Remorse from the University of Melbourne in Australia and Dr Deon Snyman, Chairperson of the Worcester Hope and Reconciliation Process. They spoke about the dynamics behind the processes of engagement between victims/ survivors and perpetrators. 

The Dialogue between Science and Society series was co-hosted by the Institute for Reconciliation and Social Justice. 

 

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