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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

UFS study finds initiation does not build character
2015-06-24

Photo: Canva.com

Initiation at schools and school hostels does not build character or loyalty. On the contrary, it is a violation of human dignity and the rights of children.

This is the opinion of researchers from the University of the Free State’s Faculty of Education after an exploratory study of initiation practices in schools.

Although the use of initiation in schools and school hostels is forbidden by the Regulations to Prohibit Initiation Practices in Schools, the study found that this practice is still widely evident in schools. The study also found that, in some cases, teachers and/or principals take part.

In the study, led by Dr Kevin Teise from the Faculty of Education, it was found that physical deeds and even violence and emotional degradation were inflicted under the guise of ‘initiation’.

The study was discussed recently during a panel discussion between the Faculty of Education, the Faculty of Law, and the Institute for Reconciliation and Social Justice.

The ‘initiation activities’ that take place during school hours ranged from carrying senior learners’ bags or doing other favours for them, handing over their food or food money, doing senior learners’ homework, and looking down when they speak to senior learners.

In school hostels, it was found that learners were expected to do humiliating things, and were also subjected to physical demands and even violence. Learners pointed out that they were smeared and beaten, their heads pushed into toilets, they had to bath or shower in cold water, they had to eat strange things, and they were prevented from sleeping.

Dr Teise says initiation practices are a general phenomenon in the schools and school hostels that took part in the investigation. Newcomers were subjected to silly and innocent practices, but also to physically and emotionally degrading, and even dangerous ones, before and after school, and during breaks and sports- and cultural gatherings.

“The study’s findings give every indication that the constitutional principles on which the policy document, Regulations to Prohibit Initiation Practices in Schools, is modelled, are not being put into practice and respected at these schools. Policy documents and school rules are pointless if learners, old pupils, parents, teachers, and the broad community consider initiation an acceptable behaviour that is, ostensibly, an inseparable part of school or hostel tradition and of the maturation and/or team-building processes.”

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