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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

DF Malherbe Memorial Lecture
2005-05-19

DF Malherbe Memorial Lecture: Language and language activism in a time of transformation (summary)
Proff Hennie van Coller and Jaap Steyn

Language activism necessary for multilingualism
The awareness is growing that language activism will be needed to bring about a truly democratic multi-lingual society. What is quite clear is that a firm resolve must continuously resist the concentrated pressure on Afrikaans-medium schools (and universities) to allow themselves to be anglicised through becoming first parallel medium, then dual medium, and finally English medium institutions.

Proff Hennie van Coller and Jaap Steyn said this last night (Wednesday night) in the 24th DF Malherbe Memorial Lecture at the University of the Free State. Prof van Coller is head of the Department Afrikaans, Dutch, German and French at the UFS. Both are widely honoured for their contributions to Afrikaans and the promotion of Afrikaans.

They discussed three periods of transformation since 1902, and said about the current phase, which started in 1994:  “Besides all institutions and councils having to be representative of South Africa’s racial composition, places of education were required to open their doors. Quite rapidly this policy has had the result that schools and universities may be solely English medium, but not solely Afrikaans medium. Afrikaans medium institutions — if they claim the right to remain Afrikaans — are quickly branded racist, even though their student body may include all races.

“Education departments are presently exerting great pressure on Afrikaans medium schools to become double or parallel medium schools.  Parallel medium education is an equitable solution provided it can be sustained. Established parallel medium schools, such as Grey College in Bloemfontein, have catered even-handedly for English and Afrikaans speakers for decades. But the situation is different in the parallel medium (and still worse in the double medium) schools that spring up usually at the behest of a department of education.

“Afrikaans schools are converted almost over-night into parallel or dual medium schools without any additional personnel being provided. Depending on the social environment, a parallel medium school becomes reconstituted as a dual medium school on average in five to eight years, and dual medium school becomes an English-only school in two to three years. Some Afrikaans medium schools have become English medium in just three years.

“Though the Constitution recognises mono-lingual schools, officials in the provinces insist that Afrikaans schools become dual or parallel medium; English medium schools are left undisturbed. One must conclude that the tacit aim of the state is English as the sole official language, despite the lip-service paid to multi-lingualism, and the optimistic references to post-apartheid South Africa as a ‘rainbow’ nation.”

They said a recent study has shown that the 1 396 Afrikaans schools in the six provinces in 1993 have dwindled to 844. The fall off in the Free State is from 153 to 97; in the Western Cape from 759 to 564; in Gauteng from 274 to 155; in Mapumalanga from 90 to 3; in the North West from 82 to 13; and in Limpopo Province from 38 to 12.

They said the changes at universities, too, have been severe, as university staffs well know. Ten years ago there were five Afrikaans universities. Today there are none. The government demanded that all universities be open to all, which has meant that all universities have had to become English medium. And no additional funding was forthcoming for the changes. The government policy amounts to a language “tax” imposed on the Afrikaans community for using Afrikaans.

“Only when all schools (and universities) are English will the clamor cease. Academics and educationists are beginning to speak openly of forming pressure groups to save Afrikaans schools, and of using litigation as one of their methods. 59% of Afrikaans parents have said they would support strong action if Afrikaans were no longer a medium of instruction at schools.”

 

 


 

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