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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

Cohesions and Disruptions Forum
2014-07-15

 
The Institute for Reconciliation and Social Justice at the UFS and the Johannes Stegmann Art Gallery, in partnership with the Vryfees, co-presented an artist and academic forum on 18 July 2014.

The forum, ‘Cohesions and Disruptions: Art as a Key to Transformation’, was aptly timed to coincide with Mandela Day. This event formed part of the transformation strategy of the Vryfees arts festival, aiming to support more diversity and cross-cultural, contemporary art programmes.

“Cohesions and Disruptions is part of the new Program for Innovation in Artform Development (PIKO/PIAD),” said Adri Herbert, Director of the Vryfees. “This includes both the cross-cultural OPENLab 2014, a new Australian/South African laboratory for early and mid-career South African artists, and a partnership with the Australian based SituateArt in Festivals initiative, managed by Salamanca Arts Centre in Hobart, Tasmania.”

The forum’s keynote speaker was Lee-Ann Tjunypa Buckskin. She is a Narungga, Wirangu, Wotjobaluk woman from South Australia and Victoria respectively. She is well known throughout the Aboriginal and Torres Strait Islands and broader arts communities. Buckskin’s presentation was titled ‘Building Young Indigenous People’s Lives through Art and Culture in Remote Central Australia.’

Buckskin spoke broadly about her involvement with youngsters – often poverty stricken and sniffing petrol – in remote areas of Australia. She explained how the arts have given the youth a chance at rehabilitation and hope for the future.

After her presentation, she was joined by Dr Willy Nel, lecturer at the UFS School of Education Studies. Dr Nel completed his PhD among the Khomani San in the Kalahari. 

Other forum speakers who presented their work included:
Dr Mari Velonaki, Director of the Centre for Social Robotics at the National Institute for Experimental Art at the University of New South Wales, Sydney;
Dr Nigel Helyer of Sonic Objects; Sonic Architecture, Sydney;
Bec Dean, Curator at Performance Space, Sydney;
Jesse Olivieri, co-founder of Parachutes for Ladies in Sydney; and
Cigdem Aydemir, Vryfees visual artist for 2014.

“Given the histories and present experiences of human rights violations and racial discrimination that indigenous people in Australia and South Africa are subjected to, we are particularly honoured to have Lee-Ann (Buckskin) as a guest speaker,” said Prof Andre Keet, Director of the UFS Institute for Reconciliation and Social Justice. 


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