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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

Teachers should deal with diversity in education - Prof. Francis
2010-10-08

At the occasion were, from the left: Prof. Jonathan Jansen, Rector and Vice-Chancellor of the University of the Free State (UFS); Prof. Francis; and Prof. Driekie Hay, Vice-Rector: Teaching and Learning at the UFS.
Photo: Jaco van der Merwe

Prof. Dennis Francis, the Dean of the Faculty of Education at the University of the Free State (UFS), recently delivered his inaugural lecture on Troubling Diversity in South African Education on the Main Campus in Bloemfontein.

He urged teachers to be open to what “diversity” might mean in a particular context and how diversity relates to either inclusion or exclusion.

“An approach that promotes the inclusion of all must be based on an understanding of how exclusion operates in ways that may have typical patterns of oppression, but differ in the specific ways that exclusion is expressed and becomes normalised in that context,” he said.

“The good teacher thus seeks to understand how these forms of exclusion may develop in the school’s context and respond through taking thoughtful action to challenge them. It may require creating a climate that enables the silent to speak and recognising that not all groups communicate in exactly the same ways.”

He said teachers also had to affirm the experiential base of learners and students. He said there was an assumption that students would be more effective practitioners if their own experience were validated and explored.

“It is crucial that the students’ own history is treated as valuable and is a critical part of the data that are reflected,” he said. “Equally important is that such stories and similar activities are intentionally processed to enable students to make the connections between personal experience and relevant theory.”

He also urged them to challenge the ways in which knowledge had been framed through oppression.

“Schools are often characterised by messages that draw on one or another form of oppression. Thus, expectations are subtly or in some cases unsubtly communicated, e.g. that girls are not good at physics, or that, while white learners are strong in abstract thought, African learners have untapped creativity, and so on,” he continued.

“For someone to integrate into their role as educators a commitment against oppression means confronting obstacles that one may previously have shied away from, such as challenging authority, naming privilege, emphasising the power relations that exist between social groups, listening to people one has previously ignored, and risking being seen as deviant, troublesome or unpopular.”

Furthermore, Prof. Francis said dealing with diversity in education was always affectively loaded for both students and teachers. He said in South Africa one injunction from educators was to be “sensitive” and thus avoid risking engagement with the contentious issues around imbalances of power.

“If both students and teachers are to confront issues of oppression and power in any meaningful way, we need to design more purposely for the difficulties they will encounter, for example, creating a classroom environment that promotes safety and trust so that all students are able to confront and deal with prejudice and discrimination. Classroom environments will need to balance the affective and cognitive in addressing issues of diversity and social justice,” he added.

He also said that teachers should recognise the need to complement changing attitudes with attempts to change the structural aspects of oppressions.

“To prevent superficial commitments to change, it is important for students to explore barriers that prevent them from confronting oppressive attitudes and behaviours. In this way students are able to learn and see the structural aspects of oppression,” he said.

“Equally important, however, is to get students to examine the benefits associated with challenging oppression. A fair amount of time must therefore be spent on developing strategies with students which they will be able to use practically in challenging oppression.”

He also advised educators to affirm the capacity of staff and learners to act and learn in ways that do not replicate patterns of oppression.

“Many South African schools have survived both the harsh repression of apartheid and the continuing legacy of oppression of various kinds. Despite that, we are often as educators made aware of the ways in which young people in particular affirm themselves and each other in creative and confident ways,” he concluded.

Media Release
Issued by: Lacea Loader
Director: Strategic Communication (acg)
Tel: 051 401 2584
Cell: 083 645 2454
E-mail: loaderl@ufs.ac.za  
7 October 2010
 

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