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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

Twenty years of the constitution of South Africa – cause for celebration and reflection
2016-05-11

Description: Judge Azar Cachalia Tags: Judge Azar Cachalia

Judge Azar Cachalia

The University of the Free State’s Centre for Human Rights and the Faculty of Law held the celebration of the twentieth anniversary of the adoption of the South African Constitution on 11 May 2016 on the Bloemfontein Campus.  Students and faculty members celebrated and reflected on not only the achievements of the constitution but also on perspectives regarding its relevance in modern society, and to what extent it has upheld the human rights of all citizens of South Africa.

The panel discussion started with a presentation on the pre-1996 perspective by Judge Azar Cachalia of the Supreme Court of Appeal.  Judge Cachalia reflected on his role in the realisation and upholding of the constitution, from his days as a student activist, then as an attorney representing detainees during political turmoil, and currently as a judge: “My role as an attorney was to defend people arrested for public violence. My role as a judge today is to uphold the constitution.”  He stressed the importance of the constitution today, and the responsibility institutions such as the police service have in upholding human rights.  Judge Cachalia played a significant role in drafting the new Police Act around 1990, an Act which was to ensure that the offences perpetrated by the police during apartheid did not continue in the current democratic era. Further, he pointed out that societal turmoil has the potential to make society forget about the hard work that was put into structures upholding human rights. “Constitutions are drafted in moments of calm.  It is a living document, and we hope it is not torn up when we go through social conflict, such as we are experiencing at present.”

Thobeka Dywili, a Law student at the UFS, presented her views from the new generation’s perspective.  She relayed her experience as a student teaching human rights at schools in disadvantaged communities. She realised that, although the youth are quite aware of their basic human rights, after so many years of democracy, “women and children are still seen as previously disadvantaged when they should be equal”. She pointed out that, with the changing times, the constitution needs to be looked at with a new set of eyes, suggesting more robust youth engagement on topics that affect them, using technology to facilitate discussions. She said with the help of social media, it is possible for a simple discussion to become a revolution; #feesmustfall was a case in point.

Critical perspectives on the constitution were presented by Tsepo Madlingozi of University of Pretoria and University of London. In his view, the constitution has not affected policy to the extent that it should, with great disparities in our society and glaring issues, such as lack of housing for the majority of the poor.  “Celebration of the constitution should be muted, as the constitution is based on a decolonisation approach, and does not directly address the needs of the poor. The Constitutional Court is not pro-poor.”  He posed the question of whether twenty years on, the present government has crafted a new society successfully.  “We have moved from apartheid to neo-apartheid, as black elites assimilate into the white world, and the two worlds that exist have not been able to stand together as a reflection of what the constitution stands for.”

Prof Caroline Nicholson, Dean of the Faculty of Law, encouraged more open discussions, saying such dialogues are exactly what was intended by the Centre for Human Rights. She emphasised the importance of exchanging ideas, of allowing people to speak freely, and of sharing perspectives on important issues such as the constitution and human rights.

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