Parent of Child With Down Syndrome Shares About the Prejudice Faced by the Community & What You Can Do to Help

To learn more about the stereotypes faced by people with Down Syndrome (DS), the struggles of their parents, and the job opportunities that can be created for the community, Rojak Daily spoke to Gonk Yen Ching, the President of the Penang Down Syndrome Association and also the parent of 13-year-old Dylis, who has DS.

Rojak Daily first decided to reach out to her to bring awareness to the community when there was a shocking incident in April where a woman splashed hot water on a man with DS which led to severe burns. “There are mixed feelings on the incident amongst the DS community and their families. Some believe that the lady might have mental issues. However, this still raised concerns for the families of those with DS to let them go out on their own in society, who are worried about the unfair treatment they may face.”

“This is due to the lack of understanding by the public towards people with DS, and some even have negative perspectives towards them. Therefore, we need to have more opportunities for people with disabilities to integrate into our community and create more awareness and inclusion for people with DS.”

These are just some of the work carried out by the Penang Down Syndrome Association, which constantly advocates for inclusion and equal opportunities for individuals with DS. The parent-support group, formed by a group of parents with children with Down Syndrome in 1999, also supports families with individuals with DS by offering emotional support and providing helpful resources that significantly impact the families.

They also offer useful programmes, including:

• Occupational Therapy
• Early Intervention
• English Communication Class
• Computer class
• Enrichment classes
• Music Lessons

Battling stereotypes

In 2023, a UK model with DS, Ellie Goldstein, was featured on the cover of British Vogue’s May 2023 interview, breaking boundaries in the fashion world. It goes to show that with the right support and opportunities, people with DS can not only contribute to society but also shine.

However, there are still many stereotypes about individuals with DS. Yen Ching said, “People think people with DS are stupid and don’t know anything. It’s not true, as they might be slower, but they are teachable and can learn some skills. There is also the misconception that they cannot work and that there is zero potential for their life.”

She continued, “People also unfortunately think that they are ugly or not charming, but people with DS can be charming too. They are also not always just happy, but they can have many kinds of emotions, the same as any other person.”

Speaking on how she wants Malaysian society to treat people with DS, Yen Ching explained, “Basically, just treat people with DS just like how you would treat other individuals: don’t discriminate, belittle, and exclude them. As they may not speak, think, behave, or appear like a typical person, people tend to stare at them or make fun of them. I hope that society can make them feel more accepted.”

Besides creating a more inclusive learning environment, Yen Ching also expressed hope that more employment opportunities will open up for them to lead an independent and fulfilling life. This includes:

• F&B (cafes, bakeries, restaurants): waiters/waitresses, kitchen helper
• Landscaping: gardening, cleaning, and easy maintenance tasks
• Hospitality: housekeeping
• Office: easy clerical work like filing, photocopying, and data entry
• Consignment: product assembling and packing

The joy & struggles of raising a child with down syndrome

Yen Ching then spoke about raising her daughter Dylis: “Raising my daughter with DS is like raising a typical child. I am very happy whenever she manages to learn a new thing, such as a new song on the piano. Although she takes longer to master the new song, the joy of accomplishment is always much greater. We also love to play toys together, and she is so much fun to be with.”

Touching on the subject of challenges, she explained, “Dylis sometimes likes to do things her way or sometimes throws tantrums. I then have to spend lots of time and effort to guide her into doing the correct way.”

Yen Ching said being Dylis’ mother taught her patience, selflessness, flexibility, and forgiveness dozens of times more as a parent of a child with DS. Yen Ching said she believes that her daughter has made her a better mum and said, “I am trusting the journey we are on.”

Steps to take if you think your child has down syndrome

If you are a parent who suspects that your child has DS, these are the steps to take, according to Yen Ching:

• Early Intervention - This is important to help them grow to their full potential. This includes speech therapy, occupational therapy, etc.
• Support group/organisation - Find a group or organisation with an understanding, caring, and accepting environment so that the child can develop better and the parents can also receive emotional support.
• Education - Find a programme that suits them best, e.g., special education, which has programmes that can help them in communication or other socialisation areas.
• Activities - Music, as well as other physical activities such as hiking, walking, and swimming, are good for them.
• Planning for their future when you are not around - This includes setting up a trust fund and taking logical steps for them to be cared for.
• Be understanding - The most important thing is for parents to give them patience, compassion, love, support, and understanding.

Lend a hand

As one of their Life Skills and Vocational projects, the Association has also started a pilot programme of baking cookies where teachers and volunteers teach students how to bake and pack the cookies. Those who would like to support the Association by purchasing the cookies or to volunteer can contact Yen Ching at +60124269180.

We applaud the work that Yen Ching is doing, and always remember to be kind!

Follow The PDSA on Facebook.

---