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Home-based programme empowering parents of children with Down syndrome

20 October 2025 | Story Andre Damons | Photo Supplied

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 responds on the outcome of the court case in the alleged attack by Cobus Muller and Charl Blom on Gwebu

2014-09-09

The management of the University of the Free State (UFS) acknowledges the finding issued on 4 September 2014 by the South African Human Rights Commission (SAHRC) that it was “unable to find any corroborating evidence to make a conclusive finding of racism and violation of human rights” in the Muzi Gwebu case.

The university management also takes cognisance of the ruling in the Bloemfontein Regional Court by Regional Magistrate Rasheed Matthews today (9 September 2014) that both Cobus Muller and Charl Blom are found not guilty on all the charges which included reckless driving, crimen injuria, attempted murder and assault (Muller), and a charge of assault (Blom). We note the Magistrate’s concerns about “inconsistencies in the evidence and exaggerations”, that the complainant “displayed hostility throughout the trial” and that he was “not a reliable witness and is prejudiced.” And therefore, in the words of the Magistrate to the defendants, “I’ve decided to give you the benefit of the doubt.”

Both Muller and Blom were suspended from all campuses of the UFS on 19 February 2014 based on the evidence available at the time of reckless driving, assault and other charges. This evidence was further borne out by an internal investigation into the incident of 17 February 2014 on the Bloemfontein Campus. In the light of the evidence available to us at the time, and the volatile situation on campus in the days following the attack, the UFS management believes that it was the correct decision to suspend the students, given the serious nature of the charges, and pending a decision of the courts.

In the light of both the SAHRC ruling as the Regional Court ruling, the university management has decided to take the following steps:

1.   The suspensions of both Muller and Blom from all campuses of the university are lifted with immediate effect.

2.   Muller may attend a forthcoming graduation ceremony during which the degree BSc Construction Management will be officially conferred upon him. He completed all the requirements for the degree in 2013, but was not allowed to attend the graduation ceremony of 11 April 2014 due to his suspension and the fact that the criminal charges were still pending.

3.   Blom may return to the university to complete his studies.

4.   The UFS is in discussion with the parents of one of the students and, if required, would also meet with legal counsel of the university, as well as those of students Muller and Blom to discuss any further steps given the outcome of the court case.

5.   In short, on grounds of the ruling by die SAHRC, as well as the Bloemfontein Regional Court, the university will not continue with its disciplinary action against Muller and Blom.

Prof Jonathan Jansen, Vice-Chancellor and Rector of the UFS said: “This has been a very difficult time for the university and I am pleased to record that throughout the crisis, the student body on the Bloemfontein Campus showed remarkable restraint and discipline, confirming also the broad, non-racial character of the peaceful protests that followed. Our student body has matured and our campus cultures are much more inclusive and transformed as a result of the quality and depth of student leadership over the past few years. The new Student Representative Council (SRC) is a splendid example of this – with the first black woman President (Mosa Leteane) and the first blind woman SRC student leader (Louzanne Coetzee).”

“I am pleased that the matter is now behind us and, again, we rest with the decisions of the Commission and the Courts as final,” he said.

Prof Jansen also apologised on behalf of the UFS to Cobus Muller and Charl Blom, their parents, and their families, for the disruption that the suspension brought in their lives and for the stress they had to bear during this difficult period. “For that, I am truly sorry,” he said.

Issued by: Lacea Loader (Director: Communication and Brand Management)
Tel: +27 (0) 51 401 2584 | +27 (0) 83 645 2454
E-mail: news@ufs.ac.za

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