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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

Census 2011 overshadowed by vuvuzela announcements
2012-11-20

Mike Schüssler, economist
Photo: Hannes Pieterse
15 November 2012

Census 2011 contains good statistics but these are overshadowed by vuvuzela announcements and a selective approach, economist Mike Schüssler said at a presentation at the UFS.

“Why highlight one inequality and not another success factor? Is Government that negative about itself?” Mr Schüssler, owner of Economist.co.za, asked.

“Why is all the good news such as home ownership, water, lights, cars, cellphones, etc. put on the back burner? For example, we have more rooms than people in our primary residence. Data shows that a third of Africans have a second home. Why are some statistics that are racially based not made available, e.g. orphans? So are “bad” statistics not always presented?”

He highlighted statistics that did not get the necessary attention in the media. One such statistic is that black South Africans earn 46% of all income compared to 39% of whites. The census also showed that black South Africans fully own nearly ten times the amount of houses that whites do. Another statistic is that black South Africans are the only population group to have a younger median age. “This is against worldwide trends and in all likelihood has to do with AIDS. It is killing black South Africans more than other race groups.”

Mr Schüssler also gave insight into education. He said education does count when earnings are taken into account. “I could easily say that the average degree earns nearly five times more than a matric and the average matric earns twice the pay of a grade 11.”

He also mentioned that people lie in surveys. On the expenditure side he said, “People apparently do not admit that they gamble or drink or smoke when asked. They also do not eat out but when looking at industry and sector sales, this is exposed and the CPI is, for example, reweighted. They forget their food expenditure and brag about their cars. They seemingly spend massively on houses but little on maintenance. They spend more than they earn.”

“On income, the lie is that people forget or do not know the difference between gross and net salaries. People forget garnishee orders, loan repayments and certainly do not have an idea what companies pay on their behalf to pensions and medical aid. People want to keep getting social grants so they are more motivated to forget income. People are scared of taxes too so they lower income when asked. They spend more than they earn in many categories.”

On household assets Mr Schüssler said South Africans are asset rich but income poor. Over 8,3 million black African families stay in brick or concrete houses out of a total of 11,2 million total. About 4,9 million black families own their own home fully while only 502 000 whites do (fully paid off or nearly ten times more black families own their own homes fully). Just over 880 000 black South Africans are paying off their homes while 518 000 white families are.

Other interesting statistics are that 13,2 million people work, 22,5 million have bank accounts, 19,6 million have credit records. Thirty percent of households have cars, 90% of households have cellphones and 80% of households have TVs.
 

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