What’s It Like Having Down’s Syndrome?

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Aisha Jamaluddin Aziz is a 15-year-old teen who likes listening to Avril Lavigne and plans to be an inclusive teacher when she grows up. She has her sights set on studying in Sweden, and she’s already preparing to achieve those goals. Aisha also has Down’s syndrome, but you wouldn’t know if at all from her plans for the future.

“I’ve got a Scandinavian thing going on right now. I’m also trying to pick up the language through an app called Drops,” she said. Aisha also volunteers in school every Thursday with the SCSOA (Special Children Society of Ampang). The students spend time with non-neurotypical students with all types of conditions, including Down’s syndrome, at Aisha’s school.

Volunteering for SCSOA is a lovely choice that has brought its own surprises, her mother Hana Jamaluddin said in a joint-interview with makchic at their house.

Hana asks Aisha if the other special needs students she helps are aware of her condition. The teen said: “I think they know, but I don’t focus on that.”

Just like any other teen

Aisha said she loves spending time with her family, friends, and cats, as well as watching romantic movies. She describes herself as being “super friendly” and is “friends with everyone in her school.”

“One of the elective classes that I do in school is to be an assistant teacher to the other students. I support them. When they go to art, I go to art. A great friend does the class with me. And I help at the library as well.”

Aisha is currently in Grade 9 in The International School of Kuala Lumpur. She is in the Life Centred Education (LCE) programme and is the only one in her school with Down’s syndrome.

First finding out

When Hana found out her newborn baby, Aisha, had Down’s syndrome, she didn’t know how to react. Like many of us, she had a vague idea of what the condition was, but not what it meant for her baby.

With the full support of her family, she started reading. Her family members left printout after printout for her to read while she was still in the maternity ward, and Hana devoured every piece of information there was on Down’s syndrome. From there, she immediately started Aisha on therapy.

“And that’s how I became successful!” Aisha interjects, laughing.

As a result of Hana’s commitment and perseverance, and with the strong support of family, friends, and school, Aisha has turned out to be content and is a happy young lady. But Hana still has her anxieties about her daughter.

“I deal with a huge sense of guilt when she’s the only one in school who has Down’s syndrome. Although she doesn’t seem to mind. It boils down to a common worry for most parents I think – did I make the right choice for my child?” Hana confessed.

Finding the right school

Hana is grateful that Aisha is thriving in school, but says finding the right school wasn’t always easy. Fortunately, things have changed now. Although it still may not be perfect, she said, there is certainly an increase in efforts towards inclusion and acceptance.

“When Aisha was born, it was very different. People didn’t really know what to do. If I wanted Aisha to participate in a certain activity, I would get an ‘Oh ok, maybe yes, actually maybe no, I don’t know’ answer.

“At that time there were very few inclusive schools, and I remember one school in particular. I had one very unpleasant reply. There was one principal who said ‘No,’ we don’t educate those kids, they are not our children.

“This was a senior educator who should have taken pride in being in a noble profession,” Hana said.

“Since then, our experience with schools and teachers have been largely positive,” she added.

Never set limits

Other than that one incident with the school principal, Hana has never really been offended by people’s reaction when she mentions her daughter’s condition.

“If I didn’t have Aisha, I probably wouldn’t know much as well,” she confessed.

“One thing that offends me, however, is when people assume that having Down’s syndrome or autism means they don’t have to have any expectations of the child. She has Down’s syndrome, she can’t play football, she can’t do this, or that. The immediate ‘No’, the fear of the lost opportunity for the child. That offends me the most.”

Aisha is undoubtedly a clear example of one who does not rest on her laurels and continues to push limits. She has tried several musical instruments including the guitar, flute and the piano. Although she doesn’t consider herself a sporty person, she does track and field in school and attempted volleyball a few months ago.

She also goes horseback riding, something she picked up when she was 12 with her mum during a mother-daughter bonding activity. Now, half of Aisha’s family rides horses too, including her cousin, Timor Abdullah, and uncle, YB Khairy Jamaluddin, who plays polo. Skiing is also a big family activity and the family tries to make a trip to Japan every year to ski.

“We learned so much from Aisha. Very early on I realise that I shouldn’t set limits for her. So when others ask me, what are my expectations for her, I always say I’d rather not have any because she has exceeded every expectation I have set out for her,” Hana said beaming.

Support that really matters

When Aisha was born, she had a minor hole in her heart, which is common for newborns with Down’s syndrome. Because her heart was healthy, she recovered quickly and her developmental milestones were not delayed as much. The biggest worry for many parents is when the heart is not stable, and they have to undergo a transplant. That impedes their growth and of course, early intervention is not available to them when they’re ill. That really hurts their development.

On top of that, a person with Down’s syndrome is more susceptible to diabetes, thyroid and other complications, so regular check-ups are imperative.

“We are very blessed and fortunate to have the means to obtain medical support. However, there are many others out there who may not be as fortunate. If there’s one thing I wish for, it’s that there is better health insurance and coverage for disabled Malaysians.

“I wish the government or any organisation would help us protect our children. If there’s a policy or a law that would help support us, why not? It would really make a difference,” Hana explained.

Other programmes that Hana wishes to see more of in Malaysia is unified sports’, where children with differences join teams with neurotypical kids.

“I think sports is a fantastic form of socialisation for kids. I wish it were more of a thing here.

“The Best Buddies programme is also something that I wished is more of a thing here. It’s an international programme originating from the US which unfortunately I don’t feel has really taken off in Malaysia,” she said.

It’s just labels

What has Hana learned from her daughter?

“You cannot give up, because the rewards are remarkable!”

“And you know what, this girl doesn’t give up. She doesn’t give up ever. When she was young and breaking all those milestones, we were thinking, ‘What? She did it?’” Hana said with a smile.

Hana also added that in many situations, bringing up a child with Down’s syndrome is not different from bringing up a typical child.

“Each issue or difficulty should be isolated for what it is, and not because she has this or that. Each child with Down’s syndrome is so different from the next. Like how each typical child is different from the next. Don’t rule anything out. Fear is the worst thing to have,” she said.

“Believing and having faith in your child and ensuring that they also believe in themselves is the most important thing any parent can do,” Hana adds.

Aisha’s Two Cents

Hana asked Aisha what she would say to parents out there who have found out that their child has Down’s syndrome.

“I would say, don’t worry that much,” Aisha said. “It’s going to be okay. There will be ups and downs, pros and cons but don’t worry too much. Just continue to support them. Just treat a person with Down’s syndrome like how you would treat any other person.

“And most importantly, stay cool!”

Liyana loves eating, reading and traveling. With young kids in tow, sometimes she's just content with doing all three vicariously through other people's Instagram accounts.