WINDHOEK - Eleven years ago, Eline van der Linden gave birth to a baby girl with Down syndrome. Down syndrome is a genetic condition where a person is born with an extra copy of chromosome 21.
This additional genetic material changes the course of development and causes the characteristics we have associated with Down syndrome.
To this day, the exact cause of the extra chromosome that triggers Down syndrome remains scientifically unknown.
According to the World Health Organisation (WHO), some physical characteristics of Down syndrome in infants are decreased muscle tone, a flat face, eyes slanting up, irregular shaped ears, ability to extend joints beyond the usual, large space between the big toe and its neighbouring toe, large tongue relative to the mouth.
Down syndrome patients can also have other conditions, including heart disease, Alzheimer’s disease, and leukaemia, according to WHO.
When baby Namasiku was born, van der Linden admits she “had no idea what to do.” And, instead of feeling sorry for herself, she started to look for information on Down syndrome.
This has helped van der Linden and her family to help Namasiku to live her best life possible.
In an interview with New Era on Saturday, van der Linden spoke positively of the joy Namasiku brings her and their family.
“…Once you embrace it (the condition) it’s not so difficult,” van der Linden said of Namasiku’s condition.
In fact, she refused to focus on the challenges insisting, “let’s celebrate what they can do”.
“Every morning Namasiku wakes up and says it’s going to be the best day,” van der Linden shared with a smile while Namasiku was playing with other children.
For her, it was a decision she made early on in her daughter’s life that she decided to have a positive attitude and do her best to give Namasiku the best in life.
She added: “let’s embrace our children and look at what they can do. They have abilities.” Raising children with Down syndrome does not have to be difficult, she added.
With the little things available at their disposal, parents can give their children with Down syndrome the best.
Indeed, children with the condition and their families have to work their way through social challenges, especially in a society where these conditions are viewed differently.
“It’s not the end of the world when you have Down syndrome,” said van der Linden, noting that some parents do not assist their children with the condition to develop their abilities as much as possible.
“Bring your child to social functions. Train them from an early age,” she said. It is this training that has helped Namasiku to develop exceptionally well, noted the mother.
Namasiku does not struggle with speech, New Era observed.
But it took hard work and the will to not give up, remarked van der Linden. It was basic things like putting peanut butter on Namasiku’s lips to lick that has assisted, noted Namasiku’s mother. She explained that most children with Down syndrome find it difficult to speak.
According to the Speech Buddies website, children with Down syndrome have anatomical and physiological differences in the mouth and throat region that affects feeding, swallowing, and oral motor skills.
They also often have hypotonia (decreased muscle tone and strength that results in floppiness), or poor muscle tone in the mouth area.
The symptoms of Down syndrome, such as speech and language difficulties range from mild to severe from patient to patient, according to the website.
Further, van der Linden urged parents and people taking care of children with Down syndrome to invest in them “by helping them the same as we would have done with our other children”.
Neglecting these children would only stall down on their development, added van der Linden. “If your child is not learning fast, it doesn’t mean that they cannot learn or they are not learning,” emphasised Namasiku’s mother.
She added: “it’s all about repetition and reinforcing. Many of our kids learn through visuals. I have picture books for Namasiku. Parents can make picture books for their kids and it doesn’t have to be fancy. There are so many things we can do with our kids that don’t cost money,” she stressed.
As they grow older, parents should also teach their children about their safety, as they tend to be vulnerable. “We have issues of sexual abuse and the kids not knowing how to deal with their sexuality. Parents should tell their kids from an early age that they can’t just take off their clothes (anywhere) and that they have to value their bodies,” she added.
And, because Namasiku was trained from an early age on social behaviour, van der Linden says she can go with her daughter anywhere without worrying that she would display unsocial behaviours.
“Let’s not be scared of this condition. It’s just a genetic disorder. Let’s start embracing and not be judgemental to people who are different,” pleaded van der Linden who is also the chairperson of the Down Syndrome Association of Namibia.
On Saturday, the Down Syndrome Association of Namibia hosted a fun dance class and a lecture on Down syndrome, Intellectual impairments and alternative communication strategies.
Facts about Down syndrome
Children and adults with Down syndrome share some common features, but naturally the individuals will more closely resemble their immediate family members.
While behaviour, mental ability, and physical development varies from person to person, many individuals with Down syndrome grow up to hold jobs, live independently, and enjoy normal recreational activities.
The likelihood of giving birth to a child with Down syndrome increases with maternal age, however, 80 percent of babies with Down syndrome are born to women under 35 years of age because this age group gives birth most frequently. -Explore campaigns website
2018-09-17 09:29:09 8 months ago