Monday, 8 April 2013

Touching the World of Cerebral Palsy

I will be sharing three disabilities that are increasingly prevalent: cerebral palsy, autism disorders and Down syndrome from my experience as a volunteer at PKIK (read more). 

I met RuYi at the Day Training Programme. She's the first CP child I know at PKIK. At 12 years old, she has the height of a 6-year-old. I was pretty nervous as I've no idea where to start. She has such a sweet smile that put me at ease immediately. Her caretaker acted as her translator at first. I realise that she could understand Tamil cos it's the mother tongue of her caretaker. She could also understand English and Malay fairly well. 

She started with some simple motor-skill coordination puzzle. You see, RuYi sees the world from a horizontal point of view. She spends her day lying down, in bed or on the ground. She waits for her caretaker to carry her around as she has uncoordinated movements and postures. Her immobile condition did not rob the joy out of her. In fact, quite the opposite. No matter how difficult or awkward her movement and posture, she will keep trying. When I check on her from time to time, she will lift her head up to look at me, with a smile. She's so much in the present - savoring every moment she could see the world as we vertical beings have taken for granted.

She beams with joy each time I read to her. Sometimes, when it's my turn to read to other kids, I could see her trying to turn her head towards me. I couldn't help but just to smile at her. I read a book to her one day, titled "I Like". I could see her face creased and her eyes twinkled when she heard, "I like reading", "I like singing" but she was blank when she heard "I like playing". I was told by her caretaker, she has not played with other kids before cos of her immobility. It broke my heart...

RuYi has such a hunger to learn, it's rewarding to spend time with her cos she's so responsive. I came to understand that CP does not necessarily affect every part of her body. She can produce sounds though she may not talk. She cannot control her muscles cos there's some type of injury or disruption to the brain but her mind is still conscious.

She loves the music session. When you sing 'twinkle twinkle little stars', she will try to produce some similar sounds to it. She understands and enjoys music!

There are 2 other CP children that I met at PKIK. They could sit upright and feed themselves. Like RuYi, they come from an orphanage home. It's not easy to take care of CP children. They're dependent on their caretakers for almost everything. Most families are not able to support them, thus it's not strange to see quite a number of them in care homes.

Thanks to the outreach programme of PKIK, RuYi comes weekly for the physiotherapy session. After the session, she'll join the Day Training Programme with other disabled kids. The teachers and helpers take turn to attend to each child. RuYi wishes for more opportunities to listen to stories, sing, learn about the world just like other kids.  

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