We shed some light on children with Down’s syndrome and how they can be mainstream learners.
Max and his family go to the beach and to Kirstenbosch National Botanical Garden, watch rugby and go camping. They attend modern dancing recitals and live music concerts. And, they have weekend braais and throw birthday parties. They also attend Down’s syndrome meetings, go to the Congenital Heart Defect Awareness picnics and visit Max’s cardiologist biannually. Max has Down’s syndrome (DS), a journey that the three-year-old’s dad Saul Helman describes as no worse than any other family’s hardships, simply different.
Down’s syndrome is also referred to as Down syndrome.
Vanessa dos Santos, Down Syndrome International president, says that a child with Down’s syndrome is not a “Down’s Child”. Also, “they are not angel children,” says Marc Köbler, dad to Leonie who has DS. “Typically, developing children and children with DS are more alike than different. So, children with DS also don’t all like music; they are not happy all the time, but they are also not suffering.” They are children first and foremost; like any others, with likes and dislikes, talents, strengths and weaknesses. Second to that they have Down’s syndrome, a genetic condition caused by the presence of one extra chromosome. This brings with it a particular set of physical characteristics and cognitive delays, to which anyone can be susceptible.
Dos Santos says: “Down’s syndrome affects one in every 800 live births in South Africa and though the condition becomes increasingly common for mothers older than 35, more than 80 percent of children with Down’s syndrome are currently being born to mothers under the age of 35.”
At first glance you may identify DS by its physical features, which include almond-shaped eyes that slant upwards, a small nose with a broad, flat bridge and tiny folds of skin covering the inner corners of the eyes. You may sometimes also notice a protruding tongue, owing to low muscle tone. Marc says that there are approximately 200 physical features of DS, but any one person has only six to seven of these. Heidi Webber, mom to Hayley who has DS, says:“ There is no correlation between physical characteristics and mental ability. All people with DS have some degree of intellectual impairment, but only occasionally is it severe.”
times have changed
If you lived in the UK in the 1970s, a child with Down’s syndrome was branded “ineducable”. Rewind further to the 1920s and the life expectancy of a child with DS was a mere nine years.
Today, a child with DS has an improved quality of life and an increased life expectancy of 65 years. Because of early intervention through physiotherapy, speech therapy and occupational therapy, children with DS are able to reach the same milestones as typically developing children.
There are many stories of individuals with DS who have excelled as ballroom dancers and motivational speakers or who have become dedicated, dependable employees and successful entrepreneurs. This is simply because, as studies have revealed, children and adults with DS can and do continue to learn throughout their lives just like the rest of the population. They just need the support of people around them who know what they need to progress and succeed in life. Parents and experts alike agree that key to success is educating a child with DS in a regular school.
If children with DS can be viewed as having a different learning style, and educators can understand that each child in a class has their own way of assimilating information, then the child with DS will cope well in a mainstream school.
“Some children ‘get it’ the first time, while others require a second explanation or a more practical technique before they grasp a concept. Herein lies the beauty of having a child with DS in the class – the whole class will benefit from a teacher who repeats something, simplifies the instruction, and speaks slightly slower when explaining a new idea,” says Heidi.
An inclusive environment prepares a child with a different ability to become a full and contributing member of their community. It also teaches typically developing children about tolerance for difference in the most concrete way.
Though children with DS are not sickly, there are sometimes setbacks. Saul’s Max had to undergo two major heart surgeries at a young age. Heidi’s Hayley has been hospitalised three times with pneumonia. Children with DS typically have narrowed upper respiratory tracts and slightly weaker immune systems and are prone to respiratory infections.
Saul says physiotherapy has played a large role in Max’s development. Heidi took Hayley to a neurodevelopmental physiotherapist when she was just weeks old. At age two, Hayley started occupational therapy and speech therapy at age three.
Marc takes a holistic view on development, saying you can teach your child without formal training. He says eating certain foods can stimulate articulation and activities such as cutting with a pair of scissors can strengthen muscle tone. Marc gives suggestions: “While waiting for your food at a restaurant, build a house out of sugar sachets to strengthen muscle tone. To teach numbers and counting, count out loud the cars on the road.”
To build Leonie’s communication skills and vocabulary, Marc and the family also sign with Leonie, saying the words as they sign them. Marc, through his own experience, believes that each child can make meaningful progress in their first six years if parents spend 20 to 30 minutes every day stimulating their development in simple ways.
Ode to the parents
It seems that the experience of having a child with DS has added more to each of Marc, Heidi and Saul’s lives than they could have predicted. Marc spearheaded an inclusive education programme at his daughter’s preschool, while Heidi was spurred on to complete her masters degree in special needs education. And despite having to hand over his young son for risky surgery twice, Saul maintains level-headed perspective: “We can never tell any parent that their fears are trivial and that their situation is easier than ours.” As with any family, there are bad days and there are good days.
The South African Association for Learning and Education Differences (SAALED)
011 648 5779 or visit saaled.org.za
Down Syndrome South Africa
0861 369 672, email@example.com