A Bit of Heaven Sent Down to Earth

Sibling relationships can bring untold blessings and challenges into our lives, as many of us can testify. What happens, though, in unconventional sibling relationships? One of our Alumna, Syazadiyanah ’18 shares about growing up with and learning from her brother, who has Down syndrome. Read on for her story!

Down syndrome is a genetic condition in which a child is born with a third copy of the 21st chromosome. The extra genetic material dramatically changes the course of development for a child, but the child can still lead a purposeful and fulfilling life — as is the case for Syaza’s brother, Syafiq. Syaza paints a beautiful picture of her brother as a warm, passionate, and talented individual.

Growing up with Syafiq.

What was it like when they were growing up? Syaza reminisces, “Syafiq is dearly loved by everyone in the family. My grandparents from both sides of the family really see him as a heaven-sent child. The day he was born, all four of them met while they were in Makkah for their hajj (unplanned!).”

When Syafiq was a lot younger, Syaza and her family found support by participating in many activities held by Kiwanis Down Syndrome Foundation in Petaling Jaya. “Other than that, we definitely have each other [for support].”

Syafiq is dearly loved by everyone in the family. My grandparents from both sides of the family really see him as a heaven-sent child.
Syaza ’18

Schools can be a safe, inclusive and caring place for all students. A positive, strengths-based learning environment has the power to develop learners’ potential, especially for children with special needs. Growing up, Syafiq did very well in school. Swimming was his passion! Once a week, his previous school in Melawati would bring the students for a swimming lesson at a nearby clubhouse. He was even awarded “Raja Kolam” once because of his swimming skills.

Change can be daunting for anyone, as it was for Syafiq. Syaza shares that, “When we moved to a small town in mainland Penang, swimming lessons were infrequent, as they needed to go to the nearest public pool. Eventually they stopped going altogether. We realised that the lack of swimming lessons in his new school was a huge loss for him, and he stopped wanting to go to school after less than two years.

Once, on the night before school, he put his school uniform, ironed and ready, into a bucket full of water. We didn’t fully understand what made him resent school so much, but I believe one of the reasons is because he felt the new school was not as welcoming or exciting as his former school.

My mom shared that, once, when she picked him up from his new school, one of his ears was so red that she thought maybe a teacher, or a classmate, was trying to wake him up by pulling his ear (because he likes to sleep, takes his own sweet time doing his work, and doing what he likes only kan).”

Cultivating an educator’s heart.

As an educator, Syaza reflects that her experience with her brother has become her motivation to understand the significance of the physical learning environment on student motivation. “It’s what keeps me going until today. With him by my side, I am always reminded of everyone’s special talent and potential to do well in life. Looking at how he manifests his potentials, I wonder what would it be like if he had completed his formal education. Would it be better? Would it be worse?”

Having a brother with special needs has deeply impacted Syaza’s approach in the classroom. “This perspective also allows me to manage my challenging experience teaching students who don’t speak my language and I don’t theirs.” She has learned to approach children and teenagers with empathy and understanding, no matter what their specific needs may be.

They may not always ask to be seen and to be heard, but they definitely want to feel appreciated and understood in your class.
Syaza ’18

She advises all educators who teach children with special needs, “Always be patient, always be willing to learn how to teach them. At the same time, don’t be frustrated if you couldn’t find what you could do to best support their learning. Make a continuous effort to ensure that your lessons are inclusive, from the colours that you choose to the content that you deliver.”

“To some, having a student who needs special attention may stick out like a sore thumb, but sometimes this student may be hiding under the table trying to be invisible, trying to fit in. They may not always ask to be seen and to be heard, but they definitely want to feel appreciated and understood in your class.“

Planting lifelong lessons.

Finally, Syaza shares several truly important lessons or values that she has learned from living life with Syafiq by her side.

first.

Do things at your own pace. Never give up learning, but take your time to rest.

Syafiq is 25, but he likes colouring and line tracing exercises. He would take days even weeks to finish just one page but will be very focused when doing it. (He uses a rule to trace the letters!)

Once he’s gotten a bit tired of it, he’d quickly get his headphone on and dance his heart out before drawing or playing video games. And then he resumes his “homework” … and repeat.

second.

Never think we are any better than anyone else just because they don’t know something that we do.

Whenever people ask “Can he speak?” Syaza would quickly redirect the question to share how observant and what a quick-learner Syafiq is. He picked up phrases such as, “Where did it go?” from Cow and Chicken or “Hey wait for me!” From Ed, Edd and Eddy when he was younger.

Even until now, he would watch cartoons in any language that the video is in. Indonesian-speaking Sin Chan with Vietnamese subtitles? Doraemon en español sin subtitulos? Kage bunshin no jutsu tutorial with original Naruto voiceover? No problemmm! He’d enjoy them all with no discrimination!

Their mom once said, “Perhaps the words that we could not understand—whenever he was trying to say something to them—was said in another language that we ourselves didn’t even know but he did!”

third.

Keep going, and keep going strong with your passion.

Syafiq also likes to draw and is very observant. Since he really loves dancing to music and watching videos on YouTube, he also likes to watch videos of people going around the Kaabah for hajj (it’s still a mystery to Syaza and her family, how does he manage to find the videos he wants when he wants it?).

“He started with drawing the Kaabah in pencil in the sketchbooks that we got him, and then he started colouring them in. Once my dad got him a tablet, he then drew it using a drawing app. What really amazed us was when we realised that the blocks he has been arranging in Minecraft was his work building a Kaabah from memory!”

“My brother Syafiq is my living reminder, my breathing motivation. I wouldn’t be able to imagine what it would be like to not have him as my brother.

Sometimes, I do wonder how would it be like having a normal sister-brother conversation with Syafiq, but I believe words are mere tools because our hearts have lips, and that what makes our relationship special.”