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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 universities are becoming the battlegrounds for political gain
2010-11-02

Prof. Kalie Strydom.

No worthwhile contribution can be made to higher education excellence if you do not understand and acknowledge the devastating, but unfortunately unavoidable role of party politics in the system and universities of higher education and training (HET).

This statement was made by Prof. Kalie Strydom during his valedictory lecture made on the Main Campus of the University of the Free State (UFS) in Bloemfontein recently.

Prof. Strydom, who was awarded an Honorary Doctorate by the UFS in 2010, presented a lecture on the theme: The Long Walk to Higher Education and Training Excellence: The Struggle of Comrades and Racists. He provided perspectives on politics in higher education and training (HET) and shared different examples explaining the meaning of excellence in HET in relation to politics.

“At the HET systems level I was fortunate to participate in the deliberations in the early nineties to prepare policy perspectives that could be used by the ANC in HET policy making after the 1994 elections.  At these deliberations one of the important issues discussed was the typical educational and training pyramid recognised in many countries, to establish and maintain successful education and training. The educational pyramid in successful countries was compared to the SA “inverted” pyramid that had already originated during apartheid for all races, but unfortunately exploded during the 16 years of democracy to a dangerous situation of 3 million out-of school and post-school youth with very few education and training opportunities,” he said.

In his lecture, Prof. Strydom answered questions like: Why could we as higher educationists not persuade the new democratically elected government to create a successful education and training pyramid with a strong intermediate college sector in the nineties?  What was the politics like in the early and late nineties about disallowing the acceptance of the successful pyramid of education and training?  Why do we only now in the latest DHET strategic planning 2010–2015 have this successful pyramid as a basis for policymaking and planning?

At an institutional level he explained the role of politics by referring to the Reitz incident at the UFS and the infamous Soudien report on racism in higher education in South Africa highlighting explosive racial situations in our universities and the country.  “To understand this situation we need to acknowledge that we are battling with complex biases influencing the racial situation,” he said.

“White and black, staff and students at our universities are constantly battling with the legacy of the past which is being used, abused and conveniently forgotten, as well as critical events that white and black experience every day of their lives, feeding polarisation of extreme views while eroding common ground.  Examples vary from the indoctrination and prejudice that is continued within most homes, churches and schools; mass media full of murder, rape, corruption; political parties skewing difficult issues for indiscrete political gain; to frustrating non-delivery in almost all spheres of life which frustrates and irritates everyone, all feeding racial stereo typing and prejudice,” said Prof. Strydom.

A South African philosopher, Prof. Willie Esterhuyse, recently used the metaphor of an “Elephant in our lounge” to describe the syndrome of racism that is part of the lives of white and black South Africans in very different ways. He indicated that all of us are aware of the elephant, but we choose not to talk about it, an attitude described by Ruth Frankenberg as ‘colour evasiveness’, which denies the nature and scope of the problem.

Constructs related to race are so contentious that most stakeholders and role-players are unwilling to confront the meanings that they assign to very prominent dimensions of their experience; neither does management at the institutions have enough staff (higher educationists?) with the competencies to interrogate these meanings, or generate shared meanings amongst staff and students (common ground).  A good example that could be compared with “the elephant in our lounge” remark is the recent paper of Prof. Jonathan Jansen, Rector and Vice-Chancellor of the UFS on race categorisation in education and training.

According to Prof. Strydom, universities in South Africa are increasingly becoming the battlegrounds for political gain which creates a polarised atmosphere on campuses and crowds out the moderate middle ground, thereby subverting the role and function of the university as an institution within a specific context, interpreted globally and locally. 

Striving for excellence, mostly free from the negative influences of politics, in HET, from the point of view of the higher educationist, is that we should, through comparative literature review and research, re-conceptualise the university as an institution in a specific context.  This entails carefully considering environment and the positioning of the university leading to a specific institutional culture and recognising the fact that institutional cultures are complicated by many subcultures in academe (faculties) and student life (residences/new generations of commuter students).

Another way forward in striving for excellence, mostly free from politics, is to ensure that we understand the complexities of governing a university better.  D.W. Leslie (2003) mentions formidable tasks related to governance influenced by politics:

  • Balancing legitimacy and effectiveness.
  • Leading along two dimensions: getting work done and engaging people.
  • Differentiating between formal university structures and the functions of universities as they adapt and evolve.
  • Bridging the divergence between cultural and operational imperatives of the bureaucratic and professional sides of the university.

Prof. Strydom concluded by stating that it is possible to continue with an almost never ending list of important themes in HE studies adding perspectives on why it is so easy to misuse universities for politics instead of recognising our responsibility to carefully consider contributions to transformation in such an immensely complicated institution as the university within a higher education and training system. 

Media Release
Issued by: Lacea Loader
Director: Strategic Communication (acting)
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: loaderl@ufs.ac.za
29 October 2010

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