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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

Socially inclusive teaching provides solution to Grade 4 literacy challenges
2017-01-23

 Description: Motselisi Malebese Tags: Motselisi Malebese

Mots’elisi Malebese, postdoctoral Fellow of the Faculty
of Education at the University of the Free State (UFS) tackles
Grade 4 literacy challenges.
Photo: Rulanzen Martin

Imagine a teaching approach that inculcates richness of culture and knowledge to individual learners, thus enhancing equity, equality, social justice, freedom, hope and fairness in terms of learning opportunities for all, regardless of learners’ diversity.

This teaching strategy was introduced by Mots’elisi Malebese, postdoctoral Fellow of the Faculty of Education at the University of the Free State (UFS), whose thesis focuses on bringing together different skills, knowledge and expertise in a classroom environment in order to enhance learners’ competence in literacy.

A teaching approach to aid Grade 4 literacy competency
Titled, A Socially Inclusive Teaching Strategy to Respond to Problems of Literacy in a Grade 4 Class, Malebese’s post-doctoral research refers to an approach that improves listening, speaking, reading, writing, technical functioning and critical thinking. Malebese, who obtained her PhD qualification in June this year, says her research confirmed that, currently, Grade 4 is a bottleneck stage, at which learners from a low socio-economic background fall behind in their learning due to the transition from being taught in their home language to English as a medium of instruction.

Malebese, says: “My study, therefore, required practical intervention through participatory action research (PAR) to create conditions that foster space for empowerment.”

PAR indoctrinates a democratic way of living that is equitable, liberating and life-enhancing, by breaking away from traditional teaching methods. It involves forming coalitions with individuals with the least social, cultural and economic power.

Malebese’s thesis was encouraged by previous research that revealed that a lack of readiness for a transitional phase among learners, teachers’ inability to teach literacy efficiently, and poor parental involvement, caused many learners to experience a wide variety of learning barriers.

A co-teaching model was adopted in an effort to create a more socially inclusive classroom. This model involves one teacher providing every learner with the assistance he or she needs to succeed, while another teacher moves around the room and provides assistance to individual learners.

“Learners’ needs are served best by allowing them to demonstrate understanding in a variety of ways, because knowledge is conveyed and accomplished through collaborative work,” Malebese said.

She believes the most important benefit of this model is assuring that learners become teachers of their understanding and experiences through gained knowledge.

Roleplayers get involved using diverse expertise in their field
Teachers, parents and several NGOs played a vital role in Malebese’s study by getting involved in training, sewing and cooking clubs every weekend and during school holidays. English was the medium of teaching and learning in every activity. A lodge, close to the school, offered learners training in mountain biking and hiking. These activities helped learners become tour guides. Storyteller Gcina Mhlophe presented learners with a gift of her latest recorded storytelling CD and books. Every day after school, learners would read, and have drama lessons once a week.

AfriGrow, an organisation that works with communities, the government and the corporate sector to develop sustainable community-driven livelihoods through agricultural and nutrition programmes, provided learners with seedlings, manure and other garden inputs and training on how to start a sustainable food garden. The children were also encouraged to participate in sporting activities like soccer and netball.

“I was aware that I needed a large toolbox of instructional strategies, and had to involve other stakeholders with diverse expertise in their field,” Malebese said.

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