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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

Professor launches his book, opposition parties attend
2011-03-22

Prof. Hussein Solomon
Photo: Stephen Collett

“We are good in opposing people, but we’re less good in opposing ideas.” This was how Prof. Jonathan Jansen, Vice-Chancellor and Rector of the University of the Free State (UFS) introduced the book launch of Against all Odds: Opposition Politics in Southern Africa.

The event was hosted in collaboration with the publisher under the title: Are opposition parties in South Africa in a crisis? This formed part of a series of dialogue sessions, organised by the Centre for Africa Studies, in the run up to the local elections.
 
Amongst those interested who attended the evening in the Senate Hall of the CR Swart Building on the Main Campus were various politicians, students, staff en a panel consisting of academics and the respective provincial representatives of the ANC and DA.
 
Dr Mcebisi Ndletyana from the Human Sciences Research Council (HSRC), acted as arbiter.
 
Proff. Hussein Solomon, author of Against all Odds: Opposition Politics in Southern Africa, also lecturer at the UFS, as well as Dirk Kotzé, Head of the Department of Political Science at Unisa, delivered enriching lectures on the stance and positioning of opposition parties.
 
Prof. Hussein, who spoke first, circumscribed the context of the political climate in the country, based on his book. “The problem that political science encounters is that everybody becomes experts on the internet, while they have no experience of what is happening in South Africa.” He said that when political parties in the country are under discussion, voters often allow myths and/or stereotyping to influence their concept of it. ‘’If there are no opposition parties, there is no democracy and people are deprived of their vote.”
 
Prof. Kotzé stated in his speech that it was not only opposition parties who had to make the government watch its step, but also the status that the country acquired, amongst others, from its connections, i.e. collaborative agreements such as BRICSA and the country’s inclusion in the G20. He left the audience with a question about how they were going to become involved in politics, and with his rhetoric question referred to options like social networks and movements.
 
Mr Sibongile Besani, the ANC'S secretary in the Free State, said the DA grew due to it’s swallowing of other parties; something he claims is taking the country backwards. He also described the use of personalities by opposition parties as means of association a weakness. He added that voters will continue voting for the ANC because they can associate themselves with the party’s vision.
 
In contrast, Mr Roy Jankielsohn, provincial leader of the DA, said voters and parties unite under their core vision for the country as like in the case of the ANC during the liberation struggles.
 
During the question-and-answer session, which followed after Mr Jankielson’s speech, Prof. Kwandiwe Kondlo, upon completion and summary of the discussions, stated firmly that the opposition parties are in a crisis. “The start of the solution is to recognise the problem. That is why our democracy finds itself in the state in which it is; because the opposition does not fulfil the role that they are supposed to fulfil.“ Prof. Kondlo is the head of the Centre of Africa Studies at the UFS.
 
He concluded by stating that the economic basis in the country was not transformed. “We cannot say that people determine their futures if they posses nothing. Opposition parties must start to communicate at this level in order to table something new. Our democracy must become more inclusive at political and material level.”

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