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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

Lessons of The Spear
2012-08-16

Discussing weighty issues at the UFS were from left: Prof. Jonathan Jansen; Vice-Chancellor and Rector; Nic Dawes, Editor-in-Chief, Mail & Guardian; Max du Preez: Investigative journalist and political columnist; Ferial Haffajee: Editor, City Press; and Justice Malala: Political commentator and newspaper columnist.
Photo: Johan Roux
14 August 2012

What were South Africans left with after The Spear? More importantly, what did we learn from The Spear?

These were the issues discussed at a seminar, Beyond the Spear, on the controversial Brett Murray painting at the Bloemfontein Campus of the University of the Free State (UFS) on Monday 13 August 2012.

The university hosted this seminar, Beyond the Spear, in conjunction with acclaimed journalists, to look deeper into the lessons that South Africans learnt from this painting and the reaction from the public and politicians following soon after it went on display at the Goodman Gallery in Johannesburg.

The four panellists, Mr Justice Malala (political analyst, journalist and host of the news show, The Justice Factor), Mr Nic Dawes (editor in chief of Mail & Guardian), Mr Max du Preez (investigative journalist and political columnist) and Ms Ferial Haffajee (editor of City Press), all presented their views and experiences on the public’s perceptions of this artwork.

In his opening remarks, Prof. Jonathan Jansen, Vice-Chancellor and Rector, said the purpose of the seminar was to help us make sense of what happened. Prof. Jansen also chaired this seminar.

“This being South Africa, there will be more ‘Spears’. More public crises will unfold that divide the nation and that will stir the emotions. We need to understand what happened so that we are better prepared to deal with the coming ‘Spears’.”

Issues on leadership, South Africa’s hurtful past and the freedom of expression were some of the topics raised by the panellists.

“This has taught us that South Africans – especially the older generation – still need to vent their anger… White South Africa must be patient and allow black citizens to shout at them,” said Mr Du Preez. He warned that this anger should serve a constructive purpose. In reaction to a question if Brett Murray did not disrespect Pres. Jacob Zuma’s dignity with his controversial painting, he said that this painting was “…rude and disrespectful.”

“It was meant to be. It was not honouring him.” He said that politicians will do anything, including messing with the country’s stability, to further their own interests. “From now on we need to be far more alert, far more cynical about our politicians.”

Mr Dawes shared his experience and said that the debates around The Spear were very painful considering where the nation has come from. He said the painting opened up painful pasts and difficult spaces. “It is up to the media to open up these difficult spaces.” He said the painting also brought up questions of how South Africans deal and live with pain. “South Africa must live with its past. The debate should now be how to preserve space for the country’s ghosts and how its citizens could get the resilience to deal with it.”

Ms Haffajee, who was caught in the crossfire between freedom of expression and human dignity and who refused to remove a picture of the painting from the City Press website, said that the media was viciously played by politicians.

“This had shown that achieving freedom took many lives, but it took very little to kill it.” She said The Spear is art that it is part of a rich cultural heritage of protest art.

Mr Malala said with the debates around The Spear painting, something died in South Africa. “The debate was taken away from us. We let politicians get to us.”

After the panellists delivered their presentations, Prof. Jansen led a discussion session between the audience and the panellists.

 

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