Shuy Yao Kang, 20, is a medical student at Nanyang Technological University. He has a 13-year-old brother, Yao An, who is a student at Rainbow Centre Yishun Park School. Yao An has MELAS Syndrome*, which causes muscle weakness, chronic fatigue and frequent seizures. Simple movements such as raising his arm require significant effort and would tire him out. Yao An relies on a specialised pram to move around in, is tube fed and unable to talk. Yao Kang shares that by watching his brother persevere through his medical challenges, he has learnt to embrace life and all that it brings.
What was it like growing up together?
For the most part, I treat Yao An like how I would with my other sibling. I enjoy sharing stories about my day with him. While he can’t talk, he’s a great listener who makes flawless eye contact and expresses his feelings through non-verbal cues. We also have these mini karaoke sessions in our room, where we would play a mix of energetic K-POP songs and acoustic music out loud. During these sessions, while I sing, Yao An would maintain strong eye contact with me and make certain gestures and expressions such as smiling and waving his arms and legs that tell me he is having a good time.
The happiest moments I have with him are the ones when he is smiling. They are rare, but when that happens, it is one of the sweetest things I hope to see again.
What other challenges do you face?
It’s extremely difficult to know what Yao An wants or doesn’t want to do. We’ve been exploring the use of Augmentative and Alternative Communication (AAC) technology, which helps Yao An to communicate using a keypad; he can press a button to tell us his preference for activities, but we’ve had limited success. As his movements are mostly erratic or poorly-controlled, it is difficult to ascertain if he had pressed the button intentionally or accidentally. The most effective way is still through observing and interpreting his non-verbal cues such as his facial expressions, gestures or the sounds he makes, to know whether he enjoys an activity.
Even with a foldable pram, it is a challenge to bring Yao An to different places in Singapore, as not all spots are wheelchair-friendly. Nonetheless, we make it a point to go out as a family as Yao An enjoys being part of the community and the change of the scenery from our home. We love to dine out as a family or visit parks and enjoy the greenery.
How has attending a Special Education school helped Yao An?
What I appreciate most about Rainbow Centre Yishun Park School is that the school exposes Yao An to activities that he would otherwise not have done at home. For example, Yao An enjoys playing games using Eyegaze, which is an eye-tracking technology for communication — something his teacher says he is extremely proficient in. We also make sure to never miss Mondays as he gets to swim in school. Even though he gets very tired after swimming, he really enjoys the exercise.
What’s something you have learnt from Yao An?
It’s so easy to be caught up with the busy-ness of life and its challenges, and forget that we have much to be thankful for. Yao An reminds me that the simple joys in life are worth celebrating, like when he smiles, or when we successfully bring him out as a family! These may be simple activities but they give us so much pleasure and help us form deep bonds as a family. What we do doesn’t have to be flashy — quality time together is all that we ask for.
Any advice for someone who has a sibling with special needs?
Accepting your sibling for who he is can be a long journey, and it may not be immediate. Take time to know your sibling for who they are, beyond just the condition that they have. Invest time into the relationship because it’ll only get better the more you know him or her! However, do forge your own life instead of centering it on your sibling because you are not defined by him or her. Rather, he or she makes you a better person to deal with other situations in your own life.
*MELAS (Mitochondrial Encephalopathy, Lactic Acidosis, and Stroke-like episodes) syndrome is a rare disorder that mostly affects the nervous system and muscles. This may result in symptoms such as brain dysfunction, muscle disease, temporary local paralysis and dementia.
