“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

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