How this NUS student with Muscular Dystrophy and Asperger’s codes and games | In The Spotlight - video Dailymotion

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“What I really want people to notice is the stubborn part of me that keeps moving forward.” Living with Muscular Dystrophy and Asperger’s Syndrome, 21-year-old Aaron Sim, a computer science student at NUS, shares his journey of resilience. He codes, volunteers, and games, proving disability is just a detail in his dream to help others.  Watch more: https://www.asiaone.com/video

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00:00People often see the wheels of my chair before they hear my story.

00:05I get it, my muscles fade, my frame I bend, so it's basically more attention grabbing.

00:11What I really want people to notice is the stubborn part of me that keeps moving forward despite the circumstances.

00:17Pixel by pixel, line by line of code.

00:26I'm Aaron Sim and I'm 21.

00:28I'm currently studying computer science over at the National University of Singapore,

00:33and I am also an APB Foundation Scholar.

00:38A normal school day usually involves just looking at a screen doing work,

00:42but every now and then I would have my mom help bring me to different venues for different courses.

00:49When time permits, I spend some time on games with my friends from Europe and America.

00:54Games are usually just a means to get away from the stresses of real life,

00:59but I find that sometimes they are also an avenue to find friends when typical social interaction fails.

01:04I'm Judy, Aaron's mom.

01:08I'm actually the main caregiver.

01:11I bring him to school.

01:13I stay around, especially for toilets.

01:16He has different modules, and different modules will have different venues,

01:22and that's where the disability team, like Miss Agnes, will bring us around before the school term starts

01:29to make sure that the location is accessible for him.

01:33Outside of class, I would often volunteer with the Muscle Dystrophy Association of Singapore,

01:40usually for flag day.

01:41What I did was just go around the place, seeing if anyone would like to donate,

01:46after which I would return the tin, and almost all the time would follow by me going out for a meal with my family,

01:52essentially allowing it to serve as a family day.

01:59I'm currently dealing with Muscle Dystrophy and Asperger's Syndrome.

02:03Muscle Dystrophy is a condition that causes all my muscles to get progressively weaker over time,

02:08while Asperger's Syndrome is within the autism spectrum disorder.

02:12It generally gives me difficulty in understanding social cues, such as non-verbal cues and tone of voice.

02:22At 13, some of my muscles at the lungs started to weaken, and so the need for such respiratory machines would come up.

02:29At first it was a CPAP, but we would soon move on to the more advanced BiPAP.

02:34A BiPAP can be treated as a sort of ventilator to help push more air into my lungs,

02:40which will greatly help my sleep quality, and making sure that I never lose my breath.

02:46Around my early secondary days, I seemed to be having a problem of almost constantly leaning to the left.

02:52As it turned out, my spine was curved quite badly.

02:56Eventually, it just got so bad that the doctor told me I had no choice, I had to go for the operation.

03:03I was originally considering deferring my studies just so I could better focus on my recovery,

03:08but as I thought about it even more, I realised I wasn't the type to try and back out from difficulty like that.

03:14In fact, I actually embraced a good challenge.

03:19Recovery means months of fatigue and learning how to balance things.

03:23When Aaron could no longer kick in Taekwondo, we tried horse riding.

03:27But when that became unstable, we moved to para canoeing.

03:31I felt a little sad each time, but I still bravely moved forward with him.

03:38So because of his social norm is not there, and sometimes he acted weirdly,

03:42he was actually being laboured, the boy on a wheelchair.

03:45It's really very sad to hear all this being laboured, you know, and all this,

03:48but as much as us parents is concerned, we want him to face all this himself.

03:55Even though I'm everyday in school, I go in and out of the classroom,

03:59I do not interfere with whatever is happening in the classroom.

04:05He has a group of understanding teachers and also special needs counsellors

04:11who actually was there whenever he faced with any problems.

04:18I had decided that computer science would be my best role for employment going forward

04:22because this is a skill that is not inhibited by my physical limitations.

04:27It also just happened to be a subject that I was extremely interested in since a young age.

04:35I don't exactly have concrete plans yet,

04:37but I expect that I am going to be able to develop something,

04:40most likely a piece of software.

04:43Regardless of what exactly I design,

04:45I just wanted to have the end goal of helping other people with disabilities similar to me,

04:51or just helping the general public.

04:54I feel like it's only fitting that I find some way to repay the kindness I have received over the years.

05:03I hope people will see him differently, talk to him, get to know him better,

05:08and I think you will see that he's actually quite an inspiration to others,

05:15and he's actually quite a fun person to be with.

05:19If you're living with a diagnosis, set some tasks for yourself,

05:23and make sure you stop at nothing to achieve them.

05:25If they seem too daunting, you should be breaking it down to several milestones and just work on each one at a time.

05:34And of course, never give up as it's my belief that nothing is impossible.

05:38Aaron has taught me to be stronger.

05:43His muscle may weaken, yet his will keeps staying strong.

05:47I'm not just a gamer, a survivor, or scholar.

05:51I'm a dreamer who refuses to log out.

05:54I'll keep rolling towards the future where disability is merely in detail in the deadline.

05:57Never the full script.

06:27but I don't really need to be compelling.

06:30I can't wait for that.

06:32They aren't able to hurt any fear.

06:34And yet, I'm just a gamer, a survivor, or a doctor.

06:36He's not learning to reach out to him.

06:37I can't wait for that.

06:39It's a doctor.

06:41I can't wait for that.

06:43He's not learning to hang out here.

06:45But he's not learning to have that care for you now,

06:48because he's trying to do this.

06:50No, I'm afraid I'm not learning to help.

06:52I'm not learning to help you get the idea of his way in this mode,

How this NUS student with Muscular Dystrophy and Asperger’s codes and games | In The Spotlight

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