Pendidikan Khas

Ying-Ying was my student at the Center. She was a tiny and fragile girl. She wore the thickest glasses. She had no verbal communication skills and was very quiet in class. She’s also adorable. When I hugged her, she sort of melted in my arms. The best word to describe her is the Malay word “manja.” She was 6 years old when she came to the Center.

She wasn’t in the best of health though. Like many children with Down syndrome, she was born with a congenital heart defect. When she was a baby, she underwent a major heart operation, which left a long scar that started from the front of her chest, across her shoulder and all the way to her back.

Learning wise, she was the slowest in the class. She didn’t know any of the alphabets and was not able to  differentiate between the different colors or shapes. With some help, she did managed to complete 8-piece puzzles. She was happy and slightly timid in class.

Occasionally, her dad gave me rides to and from the Center. It was in her car that I caught a glimpse of her very playful and cheeky self. She demanded her way with her maid and according to her dad, she’s the queen of the house.

When her parents took her to register for Standard 1 (1st grade) in a public school that has special education classes, her parents were told that because Ying-Ying was not fully toilet-trained, the school was considering not admitting her. So for the next few months, toilet-training for her was a top priority for both her parents and I.

I left the Center at the end of the school year (after one and a half years at the Center) to prepare to continue my studies in the US. One day, several months later, I received a text message from the assistant teacher at the Center. She informed me that Ying-ying passed away in her sleep. She was 7 years old.

It was sad. It was unexpected. It’s hard to explain what I felt. One of my young students just died.

Looking back, I hope I wasn’t too hard on her when she couldn’t tell “merah” (red) from “biru” (blue), even after several months of going through that. Most of all, I hope that she felt loved in my class.

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It’s been too quiet here for too long. In my absence from this blog,
1) I’ve completed my dissertation proposal,
2) Proposed my research to my dissertation committee, received their approval with some changes required,
3) Made all the required changes,
4) Applied for and accepted into doctoral candidacy (in other words, I’m now a doctoral candidate, before this I’m just a doctoral student),
5) Went back to Malaysia for a 3-week holiday,
6) Applied for and received a new student visa,
7) Applied for and finally received the university’s institutional review board (IRB) approval to conduct my research with human subjects. This was a particular stressful process that took over 2 months of waiting and 2 weeks of providing additional answers to IRB committee’s questions. All the while trying to convince them that the benefits outweigh the risks and that my participants (with developmental disabilities) are capable of giving informed consent.

Now that I’ve received IRB’s approval I can officially start work on my research.

My research purpose is to evaluate the effectiveness of a specific type of video-based intervention to teach job skills to adults with developmental disabilities in employment settings. My main interest is the video-based intervention. My sample, adults with developmental disabilities in employment settings, is sort of a sample of convenience.

Sample of convenience? That means it is more convenient to do my research with this particular sample. My university has a program that provides supported employment services to adults with developmental disabilities, so it makes it much easier to find participants and there’s also a pool of support staff that could help me in data collection.

I decided not to do my research with children in schools because it can get very complicated. It’s not easy to get permission to do research in schools, and sometimes teachers do not want the extra work and burden of having graduate students come in and out. It’s also hard to schedule time for research work in a busy classroom schedule.

Even so, right now I am facing another hurdle: I need to get approval from the management of the two stores (a thrift store and a retail store) to conduct my research there. While it may be slightly easier to conduct my research with adult participants in employment settings, it’s still not easy. Actually, nothing is easy.

I’m interested to see if my intervention works. My biggest hope is for my intervention to be very effective very quickly. I mean very very quickly! But once again, nothing is easy…

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