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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

Position statement: Recent reporting in newspapers
2014-10-03

 

You may have read reports in two Afrikaans newspapers, regarding recent events at the University of the Free State (UFS). Sadly, those reports are inaccurate, one-sided, exaggerated and based not on facts, but on rumour, gossip and unusually personal attacks on members of the university management.

Anyone who spends 10 minutes on our Bloemfontein Campus would wonder what the so-called ‘crisis’ is about.

We are left with no choice other than to consider legal action, as well as the intervention of the South African Press Ombudsman, among other steps, to protect the good name of the institution and the reputation of its staff. No journalist has the right to launch personal and damaging attacks on a university and its personnel, whatever his or her motives, without being fair and factual. In this respect, the newspapers have a case to answer.

But here are the facts in relation to the reports:

  1. No staff member, whether junior or senior, is ever suspended without hard evidence in hand. Such actions are rare, and when done, are preceded by careful reviews of our Human Resource Policies, labour legislation and both internal and external legal advice. Then, and only then, is a suspension affected. A suspension, moreover, does not mean you are guilty and is a precautionary action to allow for the disciplinary investigation and process to be conducted, especially where there is a serious case to answer.
  2. At no stage was the Registrar instructed to leave the university; this is patently false and yet reported as fact. We specifically responded to the media that the Registrar does outstanding work for the university and that it is our intention for him to remain as our Registrar through the end of his contract in 2016.
  3. The Rector does not make decisions by himself. Senior persons, from the position of Dean, upwards, are appointed by statutory and other senior committees of the university and finally approved by Council. No rector can override the decision of a senior committee, and this has not happened at the UFS even in cases where the Rector serves as Chair of that committee. The impression of heavy-handed management at the top insults all our committee structures, including the Institutional Forum – the widest and most inclusive of stakeholder bodies at a university – which reports directly to Council on fairness and compliance of selection processes.
  4. In the case of senior appointments, Council makes the final decision. Council fully supports the actions taken on senior appointments, including a recent senior suspension. The fact that one Council member resigns just before the end of his term, whatever the real reason for this action, does not deter from the fact that the full Council in its last sitting approved the major staffing decisions brought before it. The image therefore that the two newspapers try to create of great turmoil and distress at the university, is completely unfounded.

Even if we wanted to, the university obviously cannot provide details about staffing decisions, especially disciplinary actions in process, since the rights of individuals should be protected in terms of the Human Resource Policies and procedures of the UFS. But that does not give any newspaper the right to speculate or state as fact that which is based on rumour or gossip, or to slander senior personnel of the university. For these reasons, we have been forced to seek legal remedy and correction as a matter of urgency.

Make no mistake, underlying much of the criticism of the university has been a distress about transformation at the UFS; in particular, the perception is created that white colleagues are losing their jobs. The evidence points in the opposite direction. Our progress with equity has been slow and we lag far behind most of the former white universities; that is a fact. More than 90% of our professors are white; most of our senior appointments at professorial level and as heads of department are still overwhelmingly white. Reasonable South Africans would agree that our transformation still has a long way to go and only the mean-spirited would contend otherwise. But based on the two Afrikaans newspaper reports, an impression is left of the aggressive rooting out of white colleagues.

In the past few years the academic standard of the university has significantly improved. We now have the highest academic pass rates in years, in part because we raised the academic standards for admission four years ago. We now have the highest rate of research publications, and among the highest national publication rate of scholarly books, in the history of the UFS. We have one of the most stable financial situations of any university in South Africa, with a strong balance sheet and growing financial reserves way beyond what we had before. We now attract top professors from around the country and other parts of the world, and we have the highest number of rated researchers, through the National Research Foundation, than ever before. And after the constant turmoil of a number of years ago, we now have one of the most stable campuses in South Africa. Those are the facts.

The UFS is also regarded around the world as a university that has become a model of transformation and reconciliation in the student body. The elections of our Student Representative Council are only the most visible example of how far we have come in our leadership diversity. Not a week goes by in which other universities, nationally and abroad, do not come to Kovsies to consult with us on how they can learn from us and deepen their own transformations, especially among students.

Rather than focus on what more than one senior journalist, in reference to the article in Rapport of 21 September 2014, rightly called ‘a hatchet job’ on persons and the university, here are the objective findings of a recent survey of UFS stakeholders: 92% endorse our values; 77% agree with our transformation; 78% believe we are inclusive; and 78% applaud our overall reputation index.  Those are very different numbers from a few years ago when the institution was in crisis.

This is our commitment to all our stakeholders: we will continue our model of inclusive transformation which provides opportunities for study and for employment for all South Africans, including international students and colleagues. We remain committed to our parallel-medium instruction in which Afrikaans remains a language of instruction; we are in fact the only medical school in the country that offers dual education and training in both Afrikaans and English for our students - not only English. We provide bursaries and overseas study opportunities to all our students, irrespective of race. And our ‘future professors’ programme is richly diverse as we seek the academic stars of the future.

We are not perfect as a university management or community. Where we make mistakes, we acknowledge them and try to do better the next time round. But we remain steadfast in our goal of making the UFS a top world university in its academic ambitions and its human commitments.

END

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