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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

Situation on the Bloemfontein Campus, and letter to parents
2016-02-28

Letter to parents from Prof Jonathan Jansen, Vice-Chancellor and Rector of the UFS 

 

Statement by Prof Jonathan Jansen, Vice-Chancellor and Rector of the University of the Free State (UFS) about the situation on the Bloemfontein Campus


1.    As all of you know, last night we witnessed a really tragic event at Xerox Shimla Park on the Bloemfontein Campus on the occasion of the Varsity Cup rugby match between NMMU (FNB Madibaz) and UFS (FNB Shimlas).
2.    The game started at 18:30 and about 17 minutes into the match, a group of protestors sitting on the north-eastern side of the stadium decided to invade the pitch and disrupt the game in progress.
3.    After a short while, some of the spectators also invaded the field, chasing and brutally beating those protestors whom they caught.
4.    As a university leadership we condemn in the strongest terms possible the vicious attack on the protestors. Nobody, repeat nobody, has the right to take the law into their own hands. While the protests were illegal and disruptive, it did not harm to the physical well-being of the spectators.
5.    The reaction from the group of spectators, however, not only opened old wounds, it trampled, literally and figuratively, on the dignity and humanity of other human beings. This we condemn in no uncertain terms, and no stone will be left unturned to find those who acted so violently on what should have been a beautiful occasion that also brought families and young children together to enjoy an evening of sport.
6.    I cannot over-emphasise our level of disgust and dismay at the behaviour of the spectators. It is NOT what the University of the Free State (UFS) is about and we are working around the clock to gather evidence on the basis of which we will pursue both charges and, in the case of students, also disciplinary action on campus.
7.    At the same time, the invasion of the pitch is also completely unacceptable and we will seek evidence on the basis of which we will act against those who decided to disrupt an official university event.
8.    Clashes between students occurred afterwards on campus and members of the Public Order Policing had to disperse some of them. The situation was stabilised in the early hours of the morning.
9.    Disruption continued this morning (23 February 2016) when students damaged some university buildings, a statue, and broke windows. Additional reinforcements from the South African Police Service were brought in to stabilise the campus. Additional security has also been deployed.


Broader picture
10.    We are very aware of the national crisis on university campuses and the instability currently underway. While the UFS has been largely peaceful, we have not been spared this turmoil, as last night’s events showed.
11.    We are also conscious of the fact that even as we speak, various political formations are vying for position inside the turmoil in this important election year. In fact, part of the difficulty of resolving competing demands is that they come from different political quarters, and change all the time.
12.    We are therefore learning from reliable sources that the Varsity Cup competition is, in fact, a target of national protests in front of a television audience.
13.    And we are aware of the fact that these protests are not only led by students but also by people from outside who have no association with the university. Just as the violent spectators involved on Monday night also included people from outside the university.

The demands

14.    My team has worked around the clock to try to meet the demands of contract workers demanding to be in-sourced. In fact, this weekend past, senior colleagues sat with worker leaders in the township to try to find ways of meeting their demands. We were hoping that such an agreement would be finalised by Monday afternoon (22 February 2016), but on the same Monday morning workers and students were arrested after moving onto Nelson Mandela Avenue, after which the South African Police Service (SAPS) took over as the matter became a public safety concern outside the hands of the university. Since then, it was difficult to return the workers to settle on a possible agreement.
15.    The fact is that the UFS has been in constant negotiation with contract workers to provide our colleagues with a decent wage and certain benefits. In fact, towards the end of last year we raised the minimum wage from R2 500 to R5 000. We were in fact hoping that the continued negotiations would improve that level of compensation even as we looked at a possible plan for insourcing in the future. We made it clear that if we could insource immediately, we would, but that the financial risk to the university was so great that it threatened the jobs of all our staff. Those negotiations were going well, until recently, when without notice the workers broke away and decided to protest on and around campus.
16.    While these negotiations were going on, the Student Representative Council (SRC) on Monday 22 February 2016 also decided to protest. While the vast majority of our 32 000 students were in classes and determined to get an education, a very small group led by the SRC President decided to protest; some invaded the UFS Sasol Library and the computer centre, and with the President eventually made their way to Xerox Shimla Park on which route they confronted the police, interrupted traffic and in fact injured some of our security staff as well as police officials.
17.    The university is definitely proceeding to collect evidence on these illegal and violent acts and will also act firmly against students involved in these protests.

Summary
18.    The events of Monday night represent a major setback for the transformation process at the UFS. While we have made major progress in recent years—from residence integration to a more inclusive language policy to a core curriculum to very successful ‘leadership for change’ interventions for student leaders—we still have a long way to go.
19.    One violent incident on a rugby field and we again see the long road ahead yet to be travelled. As I have often said before, you cannot deeply transform a century-old university and its community overnight. We acknowledge the progress but also the still long and difficult path ahead. We will not give up.
20.    We have 32 000 students on our campuses; the overwhelming majority of them are decent and committed to building bridges over old divides as we have seen over and over again. So many of our students, black and white, have become close and even intimate friends working hard to make this a better campus and ours a better community and country. Like all of us, they are gutted by what they saw on Monday, but the hundreds of messages I received from parents, students, and alumni this past 20 hours or so said one thing—keep on keeping on. And we will.

 

The Big Read: An assault on transformation (Times Live kolom deur Prof Jonathan Jansen: 25 Februarie 2016)

 

 

 


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