A special angel who can’t wait to smile
The first time I met Kuo-Shiang and his father, I was impressed by his heartwarming smile. Kuo-Shiang’s father told me Kuo-Shiang was a IVF (in vitro fertilization) baby. Naturally, everybody was looking forward to his arrival; however, the lack of oxygen at birth caused brain injuries which affected Kuo-Shiang’s body, speech-language, and cognitive abilities.
23 years ago, before early child education panned out, the neighborhood elders held some conservative opinions against cerebral palsy. “whatever horrible thing that you could possibly imagine hearing…I have heard them all. But I still need to move on and live my life,” Kuo-Shiang’s father said. Several meetings were held by Kuo-Shiang’s father to discuss early child education with other parents, in which they would exchange opinions and work with occupational therapists to try different methods of rehabilitation. Kuo-Shiang’s father said, “Back then, all the kids who needed early intervention were like lab rats; we have tried horseback riding, hydrotherapy, stretching, etc. Lack of experience is not a problem for me. As long as someone is willing to try to help Kuo-Shiang, I am all in!”
Receiving education was the first challenge for Kuo-Shiang’s father. In order to find a suitable school that provides barrier-free environment for Kuo-Shiang, his father has spent a lot of time searching. Although there were several special schools that were willing to take students with disabilities, those schools either lacked accessible bathrooms or accessibility to the classroom where the door was not wide enough for a wheelchair. Kuo-Shiang’s father’s persistence pushed the school to improve their facilities.
Kuo-Shaing’s friendly personality has made him a popular kid among the students. Even students from ordinary classes would visit him after class and keep him company. Growing up, Kuo-Shiang has received friendliness from other kids and he enjoyed spending time with others.
In order to expand Kuo-Shiang’s horizon, his father would take him out to travel around. Part of the reason was to change how the society sees people with disabilities. One time, they were in an elevator at a department store while a mother turned to tell her kid not to look at Kuo-Shiang. This experience had hurt Shiang’s feelings. “Society still has a lot to improve when it comes to caring and respecting disabled people,” said Shiang’s father.
“Society still has a lot to improve when it comes to caring and respecting disabled people,”
They took a trip to Taitung to attend the hot-air balloon festival 5 years ago. Kuo-Shiang’s father recalled, “We arrived there at 5 am but there was already a line of people waiting. Thanks to the help from the staff, we were finally able to fly into the sky.” The accomplishment means a lot to Kuo-Shiang as well as others.
Although Kuo-Shiang was declared having the mental age of an 8-year-old, Kuo-Shiang’s father noticed that his cognitive ability has improved as he was getting older and with more life experience. In the early days, Kuo-Shiang could only express himself through crying. Now he is getting more and more mature—he understands his own conditions and even jokes about himself. Kuo-Shiang understand the hardships his father has been through. When asked by his father if he wanted to visit Universal Studio, Kuo-Shiang shook his head and said, “No.”
Kuo-Shiang’s father wants him to have more learning methods as his mental maturity has improved. They have tried head-controlled computer controls at school before. Now they are referred by the Cerebral Palsy Association and learning about eye-tracking assistive devices. Users can control computer through the eye movement. With this technology, Kuo-Shiang’s father hopes that Kuo-Shiang can learn how to type and communicate with others in the future. Kuo-Shiang’s life will be richer if he can make choices for himself. The first time Kuo-Shiang used eye-tracking software, he wanted to watch a video of a Taiwanese famous host. He was thrilled knowing now that he gets to choose for himself.
Kuo-Shiang’s father used to worry about what other things he could provide for Kuo-Shiang. His biggest concern is that one day he will be old, and Kuo-Shiang cannot find a way to communicate with others or express himself. Kuop-Shiang’s father is much relieved now that there is an assistive device to train Kuo-Shiang’s speech expression. When asked what his greatest satisfaction coming from raising his son, Kuo-Shiang’s father smiled and said, “His smile is my biggest satisfaction!”
“His smile is my biggest satisfaction!”