Down Syndrome – A Parents Perspective

Down syndrome will not define your child's entire existence. This is according to Worcester residents Henore and Fybian Swanepoel, whose youngest son, 4 year- old Kieran Liam Swanepoel has Down syndrome.

The parents, who have two other children Jared Abrahams (9) and Farren Swanepoel (6), acknowledges that they were shocked to find out about Kieran’s prenatal diagnosis, but haven’t regretted adding the little boy to their family.

“We admit that when comparing Kieran’s arrival to our other children, it is very different. As a family we experienced many challenges, but we have decided to focus on being a family and not the ‘Down syndrome’ label,” says Henore.

She highlights that the love, support and guidance of their family, has assisted them in providing Kieran with the only the best. “My family have been very supportive. They accept Kieran, irrespective of his Down syndrome - they love him for who he is. Having a child with Down syndrome extends your perspective of what ‘parental love’ really is,” says Henore.

Fybian boasts that everyone who comes into contact with little Kieran immediately loves him. “Children with Down syndrome have the ability to lift you up even if you don’t have any hope. Their warmth and gentle aura makes you instantly feel good,” he says.

Fybian and Henore provide parents with children who have Down syndrome with the following practical tips:

• Discipline your child at all times with the same expectations as for any child;
• Teach your child how to behave and interact with others in a socially acceptable way;
• Teach your child how to react and respond appropriately to the environment, e.g. greeting, asking for help;
• Teach your child to take turns, share and give and take;
• Teach your child to work independently and co-operatively
• Teach your child self-help and practical skills;
• Raise awareness regarding Down syndrome in your community (church, school, and shopping malls) talk to people about your child;
• Do not be too sensitive about rejection and negative attitudes; educate those that are about your child and his/her disability;

Affectionately referred to ‘Downsies’, Henore urges parents to treat all their children as equals, irrespective if he/ she has Down syndrome or not. “Love and raise your children unconditionally. Give them a chance to feel what they want to feel and not what you want them to feel,” says Henore.

Fybian and Henore’s biggest fear is how Kieran will be treated by his fellow peers when he starts school. “Children with Down syndrome are recommended to attend an inclusive schooling system. As parents, we have decided that we would like Kieran to do this, but fear that because of his difference in appearance, children may tease and reject him. We find comfort in the fact that this is a fear that many other parents face as well,” says Henore. 

Henore and Fybian advises parents to take their children with Down syndrome for regular medical check-ups as it assists them with skills development, enables the medical team to pick up early signs of possible health problems, and provides a support base when required.

Worcester Hospital’s has a dedicated paediatric Down syndrome clinic open to all residents with children who have Down syndrome.  Established in 2009, the clinic serves to address the needs of children with Down syndrome. The clinic takes place every three months on a Friday morning and all children with Down syndrome are welcome to make use of the services available at the clinic.

Appointments for this clinic can be made at with Worcester Hospital's outpatient secretary, Tianell Britz, or with Sharon Zinkfontein on 023 348 6446. For more information please contact Dr Arnold Engelbrecht or Nurse Sharon Zinkfontein on the same number.