10 years ago when I first came back from the States, the focus was more on raising awareness on what autism is.

“It’s important that we put ourselves in the shoes of the parents. Think of how they would want to be treated.”

There are two common misconceptions surrounding the capabilities of special needs children. It’s either people saying that they are unable to do anything at all, or they are particularly skilled in something. But we then forget those who are in the middle of the spectrum. We don’t pay as much attention to those in the middle who learn at different rates.

I feel that I get inspired daily, and that keep you to stay on in the field. Everyday here is like Autism Awareness Month. A kid who has been working really hard to say a certain word and is finally able to say it, that’s inspiring. A kid who isn’t able to sit still for half an hour but is now able to do it with guidance and help, that is inspiring. Teachers who go all out, that is inspiring too. Parents being able to do family things with their kid, that’s inspiring too. Of course, we do have our share of bad days, and so do our kids. But there is always a new day, and you learn to celebrate every little success along the way.

Placing our kids in schools remains as the main challenge. There are students who are ready, but the schools are not ready. We don’t know how to go about this yet, but we are doing whatever we can to reach out to schools that we do work closely with.

10 years ago when I first came back from the States, the focus was more on raising awareness on what autism is. Nowadays, it’s the lack of training, resources, and manpower that is the problem. There has been an allocation of budget to make places more accessible, but we’ve yet to talk about training teachers in certain skills sets. It will take time, but I am optimistic about the direction we are going. There are a lot more awareness campaigns and organisations. We do get referrals of kids at younger ages. Another thing we should look into is for our children to get evidence-based, scientifically proven treatment. I think it’s very sad when parents spend so much money on something that is not even proven or something that is dangerous. We should not be swayed entirely by testimonies. Why would we subject our kids to treatments that have not yet been proven to work?

Every year we take out time to empower the public. We went to different universities to educate students about autism. Two years ago, we went to the kindergartens in our area and gave a free workshop on how to apply ABA in the classroom. We consult with Kuching Autism Association (KAA). Since then, we have seen the teachers changing, and students benefiting.

For us as the public, keep in mind that no parent wishes to have a child with special needs. To all Malaysians out there, before you pass any judgment or say anything, it’s important that we put ourselves in the shoes of the parents. Think of how they would want to be treated. They would want to be able to go into places and not get funny looks. They would want to be able to enrol their child in school instead of being rejected. They would want to be able to do family things parents wish to do with their kids. It’s heartbreaking when I hear parents tell me that other parents are complaining about their kid. Every child deserves the same opportunity to be able to learn, to be part of a group, to have a job, have a family. That would change the way you behave.”

Part 2/2

Photostory and edited by Win Li
_________________________

Gan Huey Sien is the Principal and Program Supervisor of SEED Autism Services
Website: www.seedautism.my
Email address: info@seedautism.my
Telephone number: 03-77340088

“Going into special needs education was not something I thought of initially”

“If the learner is not making progress, we have to inspect the way we are teaching. It will take time to get everyone to understand that we need to hold ourselves accountable.”

When I first started SEED 7 years ago, it was a one-man-show. I was working with different families, I was just consulting at the time. Gradually people started asking why didn’t I also provide other services. SEED came about because there was a need, and from there we grew. SEED is focused more on early intervention. We work with the younger population, kids ranging from 18 months old to 12 years old, who has autism spectrum disorder.

Back then we were mostly doing home-based consultations, so we didn’t need an office space. But now we feel that kids need to step out of their homes for a while. We settled in this space last October. This space allows kids to come together and learn as a group, interact with others, and experience a regular school routine.

Going into special needs education was not something I thought of initially. When I finished my Psychology degree, I knew I wanted to work with kids but I didn’t know which major I wanted to go into. But when I was working in a summer camp in the US, I noticed a girl who was a special needs child. She exhibited certain behaviour, which I found odd at the time. She would only be in a specific space, say certain words over and over again, only do things a certain way. I realised I didn’t know what to do, and I thought to myself, “what was the point of having a Psychology degree if I couldn’t even help a kid?.” That was when I decided to get my Masters in Special Education, focusing on those with learning disabilities. When I was doing my masters, I was also given the opportunity to work in a public school. I learned how to write Individualised Education Plans (IEP), which involves discovering a child’s strengths and weaknesses, prioritising what you want to teach, and coming up with a plan based on your assessment. I learned how to teach in a group setting, I got to sit in parent-teacher meetings. After I graduated, I taught for 2 years as a Special Needs Educator. It was challenging because you not only get kids with learning disabilities, but also behavioural disorders, ADHD, and traumatic brain injury. What was great in the States is that they do provide you with the resources. We are provided with an expert if we are teaching kids of a different disability than our specialty, who would be supervising to make sure I was doing the right thing. I came back to Malaysia and worked as a therapist for 3 years. I also started consulting. I also tried lecturing. But I felt I really missed working closely with the kids, so I went back to what I was doing.

In Applied Behavioural Analysis (ABA), we improve the quality of life through teaching new behaviours and reducing maladaptive behaviour. ABA is a science which we apply in our daily teaching. In teaching, we tend to forget to measure if our teaching causes significant changes in behaviour. In ABA, we never blame the learner because of their capability. If the learner is not making progress, we have to inspect the way we are teaching. ABA is great because it holds the educator accountable for a student’s progress.

As far as I am aware, there is no governing body in Malaysia making sure that people providing services to those with special needs have certain credentials or training. How we fill in that gap at SEED is to hold ourselves accountable, so we subject ourselves to a standard. We want to make sure that every kid receives quality service, that the consumer is protected.

We do also provide home-based therapy. For an 18 month old kid, their home is their natural environment. Another reason we provide such a service is due to transportation. As long as there is at least one person supervising, we can conduct it at home. If parents want to incorporate their child into a group environment, we act as a stepping stone before they do that. We pick out the barriers and possible obstacles the child may face.

I encourage parents to make sure that a complete assessment is done before they shop for services. Make sure to ask questions: what kind of assessment will be conducted, what plan do you have for my kid, are you able to roughly determine my kid’s acquisition rate. Words like “progressing well”, “really well” or “extremely well” – these are all so subjective. If a specific therapy is recommended, ask why: does this help to fill in the skill they are lacking? I encourage parents to be more active in their children’s progression, but everyone is at a different pace. It will take time to get everyone to understand that we need to hold ourselves accountable for the learner’s progress.”

Part 1/2

Photostory and edited by Win Li
_________________________

Gan Huey Sien is the Principal and Program Supervisor of SEED Autism Services
Website: www.seedautism.my
Email address: info@seedautism.my
Telephone number: 03-77340088

But to get companies to employ them to work, they are not as inclined yet.

“I hope more corporate companies can be more open to identifying special needs adults who can be employed. Many may find the task of filing mundane. Get my children to do your filing! It’s a routine task, so they would be able to take it on. Maybe even as someone who provides tea or works in the pantry, they too can employ our children. I have approached a few places nearby, asking if they are keen on employing my kids for part-time jobs. I don’t always get a positive response. I think acceptance and awareness is not as present. Companies do go all out to help and sponsor. We take our kids out to the cinema, and they are more than willing to dim the lights, lower the volume, give us free popcorn and drinks. But to get companies to employ them to work, they are not as inclined yet.

We can’t blame them, because they too need to be educated. Education should start from schools itself. Instead of putting all those who are special needs in one class, an inclusion programme could be better suited. If the foundation is not right, the building cannot be built.

There is a lot of knowledge in IT, and I hope that knowledge can be used to develop applications that can aid our kids in better communication. For example if a child is non-verbal, they can use their gadget to voice activate what they want to say. A child would then be able to get around on their own. Many parents worry about letting their special needs child go out on their own because they are worried they are unable to communicate. We feel the need to chaperone.

For schools, teachers, we are all still learning continuously. All the teachers, including me, are still learning. There’s no end to it. It has to be hands-on, catered to each child’s specific need. I can have a syllabus, but I must be flexible.

For us as the public, when we see a kid throwing a tantrum, shouting, going under the table – don’t stare at them. It makes the parents feel sad, and they feel lost. Some parents walk out because they can’t take it. Nowadays parents are getting bolder, but there are many others who are still in denial. A meltdown happens sometimes. When it happens, we can’t be blaming anyone. It’s a matter of all of us working together.

Two weeks ago, I saw a young boy who was on the floor throwing a tantrum. The mother was so lost, everyone was walking past and staring at both of them. I decided to approach them. I stroked the child, talked to him a bit. He calmed down eventually, and I helped him to the mother’s car. I told her to not give in his tantrums. We must be firm too.

If someone knows what to do, do help. One time I was out and I was with one of my students who really likes to open packets. He escaped from me and ran into the supermarket. I was screaming at the top of my voice, running after him, asking for someone to catch hold of him. No one intervened except for one white man who helped to grab him. Thankfully he didn’t manage to tear any packets otherwise we would have to pay for it all. People tend to have the mentality that “this is not my problem.”

I encourage our young people to be more aware. We must take the initiative to be educated.”

Part 2/2

Photostory and edited by Win Li
_________________________

Selva Rani is the Principal of the Special Children Society of Ampang (SCSOA)
Website: www.scsoa.org.my
Email address: enquiry.scsoa@gmail.com
Telephone number: 03-42568719

 

We cater for kids of 3 major disabilities, which are autism spectrum disorder, down syndrome, and cerebral palsy.

“Though special needs children do have their hindrances, they do actually want to be able to be like the others as well.”

SCSOA was first formed by parents who have special needs kids of their own. They tried to send one of their kids to a normal school but they were rejected. Initially, this centre was set up in many rented areas, but the founders decided they wanted a place of their own. We settled down here in 2017. We cater for kids of 3 major disabilities, which are autism spectrum disorder, down syndrome, and cerebral palsy.

Prior being in this field, I used to work in corporate. My background is in human resources, majoring in industrial relations. While I was working, I also had a passion for teaching and children. I was teaching mental arithmetic for both normal and special needs kids for a while. During that time, I observed that a lot of patience is needed when you are teaching those with special needs. I noticed that many teachers didn’t know how to handle them. From there I also realised that there was a need, and I thought I should learn more to go into it.

I took up an Early Childhood Education course as well as an Advance Diploma in Managing Special Needs. I started teaching immediately on a part-time basis after I completed my course. I then did 1-to-1 therapy with children. I also helped in consultation of syllabus for schools with special needs children. And when SCSOA needed a principal, I stepped in and I have been the principal for 2 years.
As the principal, I walk in to classes and conduct hands-on training with our teachers. Hands-on training involves doing activities together with the child. For example, practicing keywords or making flash cards. Even if a child is non-verbal, he is able to mimic lip movements. Teaching certain basic words like “toilet”, “pain”, “hungry” to communicate. For those who can read, we teach them better comprehension for better understanding. We also teach them how to handle money.

My main goal for these kids is to teach them to be independent. If I can get them to wash their own dishes, clean up after themselves, that too is an achievement. Along the way, we can also pick out on a skill the child is inclined towards. We observe if a child is more vocational or academically inclined, then we train them accordingly. We have a volunteer who comes in twice a week to do baking. Some of our children do help our volunteer in making baked goods and selling them to our parents and teachers. After they are done with baking, they also help to clean up: mop, wipe, wash their own dishes. Malaysian CARE calls us around every few months to help them in packing their magazines. Our children are used to routine, so they are able to carry out the same task repeatedly. There are places which I feel can employ them. At the moment we do not have as much acceptance of employing those with special needs in Malaysia, but there are a few places that are doing so.

I get to witness a child’s gradual improvement on a daily basis. If a child initially comes to me and is unable to pick up a pencil and now she’s able to pick it up and draw, that is progress to me. Just this year, we were also able to send 3 of our kids off to normal schools, for home-schooling. From observing their progress, we felt they were ready to go for an inclusion programme.

A common concern most parents of a special needs child would have is their lack of independence. Many of these parents may be getting older. Who is going to look after their child? Would their siblings be taking care of them? Maybe if we can teach them to be independent enough to care for themselves, they can gather as a group to look out for one another, get a simple job, earn enough to get by, and maybe some sponsors to care for them? Additionally, would people be treating their child right? How confident are we that they would not get into a situation that isn’t right? The fear is still there. We do teach our kids the difference between good touch and bad touch. We’ve not gone into the sex part of it, but I am looking for experts who can help to educate them on this. We should equip them with all this knowledge before they go out into the world on their own.”

Part 1/2

Photostory and edited by Win Li

Selva Rani is the Principal of the Special Children Society of Ampang (SCSOA)
Website: www.scsoa.org.my
Email address: enquiry.scsoa@gmail.com
Telephone number: 03-42568719


“Surprisingly, I became one of the best debaters for the competition”

“Two debate teams and I’m in one of the team. The first reaction I got was, “OH MY GOD”. We got a topic about the functions of weed but back then, I didn’t even know what that was. I thought, if we got the topic, I’ll die.

I was extremely nervous on the day of the debate competition because I saw there were many strong debaters around me like they’re competitive and had a strong grasp of English. I wanted to pull out the day before the competition and I told this to my mom about it. But she told me, “You know what? Just go for it. The least you can do is be silent. That’s all. It’s not going to be that bad. It’ll be an experience for you”.

So, in the end, I just went on with it.

Surprisingly, I became one of the best debaters for the competition. I was the second speaker but that surprised me. I guess it was just luck. It’s because of the topic that my team received was about whether celebrities are a good impact on society. So, I believe partially it’s since the topic became my advantage, and another part was because of me. It’s just that I didn’t believe in myself.

Even then, I wasn’t sure of myself whether I was able to make it through the competition or at least not embarrassing myself. This is because, in debates, every speaker mattered as there’s limited time to link the points from the previous speaker to the next. So, if you can’t rebut anything during the debate, it’ll be extremely embarrassing for you.

There weren’t any preparations before the debate because it’s an impromptu debate and held interclass. So, my team had like 10 minutes to prepare everything and we also watched some Youtube videos. It didn’t help that much.

Plus, I went to a Chinese speaking school and I wasn’t that fluent in English. So, I grew scared and nervous around people who are fluent in English. But I’m glad I started taking steps towards improving my English afterward. I’m aware that English is one of the important languages that brings you everywhere so in the process of it, I eventually build my confidence as well.

I learned that you shouldn’t deny your own potential. Give it a try and you might shine. For me, I guess I have the awareness to pursue my dreams and goals, but I was just lacking confidence in myself. But I realized this is a learning process. From now on, I’ll try and grab every opportunity while I can.

Honestly, it’s okay to not be good at everything in life. We’re just not born to be perfect. I don’t blame my younger self for not being confident enough. I know that without those regrets, I wouldn’t be who I am today. The regret I felt back then became the driving force that created this motivation in me. I am motivated to try out anything and everything that I am interested in.

Nevertheless, I’m still working on building my confidence.”

Photostory and edited by Elly Zulaikha

“So, for now, I’m trying to take part in competitions here in Malaysia.”

“One day we happened to see a singing class, so my mom was like, “Do you want to go and learn?”

I wasn’t forced by my mom to try singing. I was kind of interested in it but not quite, you know. But once I got in there from the age of 7 to 15, where I learned properly, that’s when I got really interested in it. But I had to stop and start again after I finished my SPM.

The thing is, I only sing Tamil songs. I don’t particularly have favourite songs. Whatever songs that come by, I’ll just sing. But I really want to be a playback singer for movies. So, for now, I’m trying to take part in competitions here in Malaysia. If not, I might travel to India.

There’s a famous singing show called Super Singer India. Maybe I’ll learn and take up some training with a famous singer from India, who’s also a vocal trainer. From there, I’ll take part in the competition.

Although my parents encouraged me with this dream, they asked me to finish my studies first, like, get my degree and all. At least if my singing dream doesn’t happen, I’ll have a proper degree by then.

Now, I sing a lot at home. All the time. I even sang for my cousin’s birthday party and my father’s friend’s birthday party. It’s nice when they complimented on my singing. It makes me want to sing more.

I mostly post my singing videos on my Instagram. To be honest, I hope I get to achieve this dream at least once in my lifetime. I want to experience all of it, being a playback singer or performing in front of large crowds and for a big performance. ”

– Humans of Kuala Lumpur​

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“My parents were always very supportive, and they gave me the freedom to chase my dreams.”

“Spend your time with your family. Appreciate every moment you have with them. They are already happy when you’re able to be patient with them.

I want to study Business. That is something I personally enjoy, and I want to be able to help my father in his business as well.

My father has an air-conditioning business, where his business helps in servicing the big industrial air-conditioners you see in shopping malls. I want to be able to contribute towards making my father’s more IT-friendly and forward, as it is still quite traditional right now.

This is something I want to do, not what my parents wanted me to do. My parents were always very supportive, and they gave me the freedom to chase my dreams. They allowed me to choose what I liked, as long as I work hard for it. I hope all youngsters remember to chase their dreams bravely!

I enjoy every moment I get to spend with my dad. He’s actually quite old now, he’s about 70 years old. My dad married late and this is actually his 2nd marriage, so I have an older brother and older sister.

Having a parent who is older makes me become more mature. I feel there is a greater responsibility for me to take care of my family. I’m thankful that he’s still healthy despite his age, and I hope he is able to stay longer with us.

My dad used to be able to run around, and he loves travelling. But now he doesn’t travel as much, as his legs are not as strong as before. I decided to take a different approach to see the situation: despite being not as strong as before, I choose to appreciate any and every moment I have with him.

My dream is to be able to use my first paycheck to take my parents travelling overseas. My dad has visited many places before, but I think I would like to bring him back to visit my hometown, China.

My grandfather and his ancestors used to be in China, so I think it’ll be nice to visit. I was told that my grandfather actually went through the Second World War. He was quite well-to-do at the time, so he ended up providing shelter for everyone in the village!”

– Humans of Kuala Lumpur

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“I founded a minimalist group in 2018, alongside with two other minimalist ladies.”

“New beginnings, new life. I got divorced about a year ago. Now I’m living my life as a minimalist.

It was a real journey for me. I tried to fix things with my ex-husband, but it didn’t work out, so I left him. However, I am more mature, confident and more stable in my life now. In fact, I’m living a better life than I was in my 20s.

I used to be quite shy, but I think my attitude has changed. I thought that life is too short, and you only live once. YOLO kind of thing. I developed this attitude after my divorce.

I guess as someone who went through a divorce, I hope married couples should consider divorce as a last resort. Make sure you have a solid reason before ending it, otherwise don’t simply talk about it. Don’t be like, “Ugh, I’m so angry. I want to divorce him”. I didn’t take it lightly even when my friends encouraged me (to divorce). I hope people would consider counselling or therapy.

Plus, I think couples should have a clear balance in their boundaries. It could be about anything, emotionally and whatnot. Make sure both parties know each other’s boundaries. It’s so important to have that, otherwise, you’ll have to start over with them. And of course, I believe love is not a feeling, but it is a choice. Yes, there are days when you may not like your spouse or partner, but if you choose to love them, you’ll stick with them.

So, I started my minimalist journey while I was still married. I decluttered around the house and my ex-husband enjoyed it back then. But minimalism has really helped me in terms of moving out of his space. I find it easier now that I have fewer things to bring if I must move out.

I founded a minimalist group in 2018, alongside with two other minimalist ladies. There weren’t any active minimalist group and we wanted to have an active space where we can share advice and tips with each other. Basically, help one another grow in our journey as a minimalist.

But people think that minimalism is scary. They cannot bear to let go of things they own. But truthfully, the things you own will end up owning you. You have so many things in your life, but you don’t have the time to enjoy it. Why? It’s just taking up your space physically, mentally and emotionally.

Yes, it’s hard in the beginning if you want to declutter. I’m happy to say I managed to help my friends and family to declutter as well after they’ve seen me gone through some positive changes in my life. Minimalism really does bring freedom in life for you.

And as a minimalist, after the divorce, I can say that I’ve lost 80kg (referring to the ex-husband) out of my life!

– Humans of Kuala Lumpur

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“That’s when we found out she has a Stage 5 kidney failure.”

“I was distraught because my mother was sick. After all, you only have one mother, right? But the consequence of heading back to Malaysia in the middle of exams meant I won’t be able to graduate this year.

The final exams were coming up in May. I was in the UK, studying for my final year. I thought, “Will I be able to make it until the exam ends? Should I fly back to Malaysia if anything happened to her?”

I was in the middle of sitting for a paper when I got the news that my mother was admitted to the emergency department. I called and asked my father if I should go back right there and then, but all he said was, “Don’t worry about Mom, we can handle it”.

After the exams, I flew back to Malaysia. That’s when we found out she has a Stage 5 kidney failure. It was so sudden, and I wondered how long could she live? She may continue to live for another 5 years if she receives dialysis treatment.
Otherwise, she would only have a few months to live.

Moreover, I didn’t have the heart to leave my mother who was in a coma. I didn’t have the money and I feared I would end up photoshopping myself for my graduation photos.

It was on 9th July when I received the news that my mother woke up from her coma. In the end, I managed to attend my graduation. But even then, my father gave me his money to attend the event, so he couldn’t accompany me.

I received Second Upper results. I wasn’t sure I could finish the exams, but I am grateful that I did. My friends knew about my mother, but they didn’t know she was admitted to the hospital almost weekly.

For two months, I stayed by her side in the hospital. I took care of her and I slept there. It was terrifying when you know a hospital is a place where you’ll be informed, ‘this loved one has passed’.

But we supported and gave words of encouragement to one another. We accepted the fact that someone we love is sick and we are willing to sacrifice for them.

Currently, I am working in a government-limited company in Kuala Lumpur. I’m working there because I want to give back to JPA, as I was the JPA scholar since 2014. I’m thankful to JPA because they helped to change my date of flight ticket to come home to see my mother.

To all my friends or anyone struggling with having a sick family member or any other difficulties right now, do not worry. You are not alone. If you reach out, there are a lot of people out there who want to help you. Do not keep it all to yourself. ”

– Humans of Kuala Lumpur

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“This happened because they are philosophical themselves.”

“The Chinese (in China) are very philosophical. They would always talk to the younger generation about the future, what China could be. They looked at objectives.

We, Malaysians, on the other hand, we don’t have objectives. But that, we cannot blame. China was the only country that developed interests in technological development. When they had the open-door policy, the Chinese who went out of the country came back and brought new technology with them. When we talk about 5G communication, they already have 7G.

They are about 20 years more advanced than everyone else. This happened because they are philosophical themselves. They don’t change their policies but rather, they have a planner in place. A planner to monitor what is being decided in the plan. Even earlier in our country, every time we changed our leader, we changed the system. That’s because we don’t have a planner.

Historically, when the British brought the Chinese people as labourers, they had to do all sorts of job. They Chinese don’t tell you about the hard life. Most of the Chinese who were taken out of China came from the South. They spoke Cantonese, Hakka and Hokkien. But after the British left, everything was a mess in Malaya. But back then, we didn’t know how to plan for our country.

One way we can learn this, though, is from one of the hadith. The hadith of ‘belajarlah kamu hingga ke Tanah Cina’ (literally: learn until you reach China, meaning seek knowledge until the ends of the Earth). China put everything on a balance. It’s not easy, but they went on and persevered”.

– Humans of Kuala Lumpur