[Posted this on the OCOS site but decided to put this here too just so my words can reach more people :) ]
The thing about volunteering, especially when it involves having to forge a personal relationship with another human being is that it always, always, always leaves you with a hollow feeling at the end of it. Over the course of the past 2 months, seeing Muaz on Mondays became a ritual and overtime, something I looked forward to. This Monday (9/10/17) marked the last house visit to his home and as with all "lasts", I started noticing the little things he did, like placing his water bottle at the side and walking over to pass me his basketball so we could start our weekly bouncing practice. I noticed how he automatically hovered his hand around his waist - the pose he'd started to associate with bouncing- and how his hands would find their way to our hands whenever he wanted to "merry-go-round". "Merry-go-round", also known as "Muaz-holds-Chi-and-Jacq's-hands-and-we-all-spin-around-as-fast-as-we-can" was a game that Jacq and I came up with to motivate and reward Muaz for achieving milestones such as overcoming his apprehension towards distance by jumping from one piece of paper to another. These milestones, although seemingly insignificant to the layperson, were huge steps for Muaz and it was very heartwarming to have had the chance to experience them with him. I joined this programme for two main reasons, the first being that it gave me another opportunity to work with children, who remind me time and time again of the potential for growth and the importance of seeking pleasure in the little things in life. The second reason was to find and develop my voice to speak up for the autistic community. I wanted to be able to say more than just a "can you not say that?" to people who used autism as an insult or joke in response to their friends' silly behaviour. Prior to this experience, I struggled with finding a response that was strong enough to counter the typical retort I'd get after speaking up - "Why you so uptight? A lot of people also use it what. My friends all call each other autistic but we all know we’re just joking."True enough, these two months have indeed helped me to find my own voice that I will, from now on, use to help spread awareness and challenge stereotypes surrounding the issue of special needs. While this experience definitely gave me a deeper understanding of what autism entails, I’ve come out of it with far greater respect for the parents of these children. Many times throughout this experience, I caught myself wondering if I’d ever have the courage, strength and grit that Muaz’s mother, Ms Lydiawati, possessed. As a woman, her identity isn’t just tied to being a mother and she definitely has her own dreams, ambitions and hobbies. Her life extends beyond the walls of her home and Muaz’s school, but because of her unparalleled love for her son, she wakes up early every single morning to go through the same routinely tasks - wake up, get him ready for school, take him to school, fetch him back home from school, wash him up, teach him, play with him or take him for speech therapy sessions. Seeing the smile she wore throughout the entire conversation she had with us during our first house visit made me feel so in awe, and I couldn’t help but wonder how long it took for her to reach this stage of positivity. As with any human, she is bound to have days where she slips and finds herself drained of any purpose except for the sole reason that he is her son, but the fact that she presses on and is so patient and loving to Muaz brought warmth to my heart. A mother’s love is so great, and there is one particular line she said that has remained and will remain etched in my mind for a long time to come - “If even the parents don’t believe in the child, who will?”I have seen members of the public shoot judgmental and even disapproving looks to parents of autistic children because the first thing that comes to mind when one sees a child screaming or jumping around in public is that the child has poor upbringing. I appeal to whoever who finds and reads this post to please, be empathetic. People don’t need and don’t want sympathy. People want understanding, patience and empathy — that in itself is already offering help and support to the autistic community and their families. Changing negative perceptions can start from the way we talk about autism to young children — our cousins, siblings, neighbours or even our own children (in the present or in the future). Teach them that nothing is “wrong” with autistic individuals. People learn things at a different pace, people see things differently and people enjoy and excel in different things. Talk to them about autism and help them understand that everyone deserves respect and dignity as a human being. Don’t be afraid to speak up if you hear people saying things like “eh, you autistic is it” as an insult to silly behaviour. Never use autism as an insult.Words carry strength, and strength can be passed on to the families of the autistic community through simple but heartfelt words such as “you are doing well” as a replacement to judgmental looks or stares. Be kind for everyone is fighting a battle you don’t know about — I cannot emphasise this enough. I’d like to think that people come into our lives for a reason, and with that, thank you Muaz and Ms Lydiawati for leaving me with so much at the end of this journey with your family. Of course, a huge thank you to Pey, without whom this journey would not have happened.
