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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

Historians must place African history on world stage – Dr Zeleza
2017-05-30

 Description: Historians must place African history on world stage Tags: Historians must place African history on world stage

From the left: Panellists Rev Henry Jackson,
Prof Irikidzayi Manase and Arno Van Niekerk at a book
launch and panel discussion on Africa Day hosted by the
UFS Sasol Library.
Photo: Mamosa Makaya

“African historians must take seriously the challenge of placing African history in world history, and in the history of our species, Homo sapiens.”

With these words, Dr Paul Tiyambe Zeleza, Vice Chancellor of the United States International University-Africa in Nairobi, Kenya, stressed the continent’s challenge.

According to him the contest should continue to recover and reconstruct Africa’s long history. Liberating African knowledges can be done by: “Provincialising Europe that has monopolised universality, universalising Africa beyond its Eurocentric provincialisation, and engaging histories of other continents on their own terms.”

University celebrates Africa Month in various ways  
Dr Zeleza delivered the ninth Africa Day Memorial Lecture, titled The Decolonisation of African Knowledges, at the University of the Free State (UFS). The lecture, hosted by the Centre for Africa Studies (CAS), took place on 24 May 2017 in the Equitas Auditorium on the Bloemfontein Campus and was one of the ways in which the UFS celebrated Africa Month.

Scholars should immerse themselves in these thoughts

Dr Zeleza focused on two issues, which he said were interconnected. They were the unfinished project of decolonising African knowledges and the continent's positioning in global knowledge production.

He said Africa’s scholars and students should “immerse themselves in the rich traditions of African social thought going back millennia”. According to him the continent’s research profile still remains weak in global terms.

“It is imperative that the various key stakeholders in African higher education from governments to the general public to parents, and to students, faculty, staff, and administrators in the academic institutions themselves, raise the value proposition of African higher education for 21st century African societies, economies, and polities.”

“Colonialism is associated with injustice
and inequality, but what happens when
our liberators become our oppressors?”

Library celebrates with panel discussion and book launch
The UFS Sasol Library celebrated Africa Day by presenting a book launch and panel discussion on 25 May 2017, on the pertinent and current political theme of land redistribution with a comparative basis of land invasions in Zimbabwe.

Prof Irikidzayi Manase discussed his book White Narratives: The Depiction of Post-2000 Land Invasions in Zimbabwe, accompanied by Rev Henry Jackson who wrote Another Farm in Africa. A perspective of the economic implications of land redistribution in South Africa was discussed by panellist Arno Van Niekerk: Senior Lecturer of Economics at the UFS Faculty of Economic and Management Sciences.

Inequality still an African problem
The content of the books are a stark reminder of the burning issues of inequality and loss of identity of those who lost their farms in Zimbabwe, a collection of memoirs by white farmers and their families. Rev Jackson gave a religious perspective on reconciliation, forgiveness and the question of land ownership, saying that healing of injustice begins with forgiveness of past transgressions.

Van Niekerk highlighted that while land issues were important, “social cohesion is affected by the economic decisions that will be made”. In closing, Prof Manase called for serious consideration of what the future may hold. “Colonialism is associated with injustice and inequality, but what happens when our liberators become our oppressors?” 

The panel discussion was attended by staff and students of the university, and was lit up by robust discussions on possible historical and future solutions to the question of land, decolonisation and political power struggles in Southern Africa and lessons to be learned from Zimbabwe.

UFS celebrates Africa Month (24 May 2017)

 

 

 

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