Anson's Story

I knew Anson and his mom when he was just 3 years old. He was in the same Sunday school class with Jason. When I observed him in class, I knew there was something special about him. While others were coloring with a crayon, he would write up 3-digit additions on a page. While others barely knew their ABC, he was printing his name in capital letters. But when it comes to speech, his was a little slurred compared to his peers. When Koty his mom told me at the end of the class that he was developmentally delayed, I told her that Jason was the a special kid too. That was how we crossed each other's path in God's masterplan. Thereafter were years of friendship blooming out of mutual support and encouragement. Never had I expect to be so privileged to witness this amazing transformation and the birth of a musical prodigy. In fact, Anson used to be in my Kindermusik class before he learned to play piano. He was trying to hard to get my full attention that once he went through the school bags of every student in class and tossed everything out. I must admit I felt quite agitated, helpless, not knowing how to react. Since that class, Koty pulled him out of my class and I declared my class management skill a complete failure.

Then, Koty started teaching piano to Anson. Yes, Koty may be a piano teacher, and a music major, but she never attempted to force Anson to learn piano at very young age, like many Asian parents do. For if she did, she would have started teaching Anson piano when he was 3. But I remember visiting them one day when Anson was five or six. He wanted to show off just like any kid would, and all he was doing was banging on a toy piano with colored keys. But it was not until a short year or two later, when I listened to him playing a grade 3 piece in the student recital that put me in awe, that I felt something more than musical talent is going on in him. There is just something in his music that made him stand out.

Here is Anson's story in his own writing as posted on Nick Vujucic's blog (the inspiring speaker with no limbs). I hope you will be touched just like many others were.
Here is a sneak peek of his heavenly musical performance. Look for more on YouTube under channel anson022.

Inspiring Video on AAC

I came across this video from another blog I was following. This was made for the AAC awareness month. (recall: AAC means Alternative Augmentative Communications)

Yes, many of our kids and even young adults who are restricted in their wheelchair, with what appears to be uncontrollable limb movements, limited vocal, not to say speech development, and add to that, big soaked bibs hanging embarrassingly from their neck, are often misunderstood to be unable to communicate at all. But with the help of AAC, these kids are empowered with a voice, and they can express their thoughts like you and me. Not only that, they can have a dream, they can have an ambition!

This video was just so overwhelming, powerful, inspiring...I don't know of any good words to describe it. Just watch this till the end if you have time. Hope you can feel the power.

Teacher with PASSION

Two Sundays ago, a pastoress from Singapore came to our church to give a sermon. Her message was about building a Chrisitian family. She mentioned her daughter was a special ed. teacher in Hong Kong for 18 years, but lately has to take a break because of a bad back after years of hard work. I obtained her contact anyway as I want to get information about special education system in Hong Kong before I go back. I called her last week and turned out to be the best decision I've made.
Her name was Julia. I can tell she was a little shocked when she heard I was calling from Canada. But after a brief introduction about me and Jason, how I got her number, she was quick to ask me questions about Jason and seems to know already how to help me. The way she talked was so calming and positive and reassuring, that you know you can trust her. She offered to refer Jason to one of the house doctors within what is called Hong Chee Association for the disabled, so that we can get a doctor's letter and start applying for school. She asked me what Jason can do, I told her how he can answer yes or no to questions, expressed his basic needs, etc...she immediately said he would be a good candidate for the school in Shatin, which is catered for those with physical and mild-to-moderate intellectual disabilities.
When I brought up the concern that Jason can only read certain English words but not Chinese, she said half of the students there do not know how to read either language or at all. But they will be taught pre-reading skills such as recognition of familiar signs in the community like MTR, washroom, etc... Then she said something which touched my heart. "There are toooo many things every one of us cannot do, so we don't count what one can NOT do. Instead, we look at what they CAN do and build upon those skills to help them reach their potential".

Isn't this so true? There are so many things each of us, able bodies, cannot do! I can't swim, you can't dance, he can't ride a bike, she can't play piano.... but we don't get classified by what we can't do! We respect each other for who we are, but not by how much we can or cannot do. And when I told her Jason is easily distractible and may not pay attention to his task on hand, her response to this remark made me cry immediately. She said, they believe that when a child did not pay attention or did not learn, it's not his/her fault, but that of the teachers. I cried because I have finally found a special ed. teacher with passion and conscience. I cried because I finally found someone who actually believed in and practiced what I wrote about the "Least Dangerous Assumption" (recall my post Reflection on the teaching journey dated Aug 7/2010.) I cried because I finally found a teacher who can rightfully take pride of her role as an educator, and not a unionized worker hanging onto a secure job.

Talking to her made me relieved. It rekindled my hope to Jason's future. I am looking forward to our meeting in November when I visit Hong Kong.

Second week of cold laser therapy

I have diligently gone through the reflex integration program prepared by Bonnie Brandes. It was a well-written handbook with lots of information about reflex and how it affects daily functions. I realized that Jason has many of the retained reflexes that make him unable to perform many tasks. For example, the Moro reflex is like a startle reflex that is triggered when there is a sudden loud noise. Instead of filtering the noise, Jason would paralyze with a blank stare, and stop whatever he is doing, and may even break into tears. We saw this since he was very young. It went away for a while when we were into the 2nd cycle of g-therapy but sneaked back in without any triggers.
So the first reflex we are dealing with using the cold laser is Moro. I have done this for 2 weeks by now. We did notice he crawls with better confidence. Balance is better but not good enough to allow independent crawling. But the "intentions" to move are definitely better. We didn't test his Moro reflex yet but noticed some changes that may or may not be related to this. He was sticking out his tongue more (with ease and longer) and would observe the environment more. For example, we were at the same Walmart that he's been going for years. But today, he suddenly got curious and looked up to the ceiling and started observing what's up there. (turned out it was the big circular vent). He did that the other day too at another place but I did not take note and forgot where it was.

Anyway, I am not supposed to see complete integration to happen so fast but I was told subtle changes will start to surface. Hopefully we are on the right track so my big investment into this laser is well justified.

Life, Death

I went to visit a dying friend last week. He was 60+, had lung cancer for about 3 years...and his time is almost here. I was by his side, holding his bony hand, can't do much but pray for him. I'm glad he chose to accept Christ in time and knowing his soul will go to heaven put me in peace.

Looking at his listless body and half-open mouth, he reminded me of mom, when she passed away last year. But mom was lucky. She was blessed with a loving family and was surrounded by all her children and grandchildren. She was attended 24 hours a day throughout the 6 weeks before she passed away. She was pampered and loved up till the very last moment in this world. If the nurse did something unruly, mom was sure we would not only defend for her, but we did it fiercely. But my friend was lonely. He was left alone in his sickbed most of the day at palliative care. There was no one to hear him whine when he felt the sharp pain. So he did just that when we were there.

Illness is tough. I am totally at ease with death cuz as a Christian, I know that I will be going to heaven, an eternal home. But I am the kind of person who likes a loud goodbye, otherwise, it's just not nice. I hope when it's my time, I will be surrounded by my family and my best of friends, and be able to say goodbye.

Otherwise, it's just not nice.

Video of iPad app - myChoice

I had trouble uploading the video to the previous post, so I am attaching a new link to YouTube here.  Jason's intention to touch is there, but precision is not.  Ataxia is the culprit.  I also hope that as his visual attention improves, he will get better in doing this app.

iPad app designed for Jason is finished!

Thanks to Andy (my nephew), the app myChoice is finally completed. It is not officially rolled out yet but I have the privilege to use it for more than a month now.

It is inspired by the program called "Choose-it Maker" by Macromedia which is a choice making software for PC using touch screen, mouse click, or switches. I have been using it to set up activities so as to teach Jason step-scanning using two switches, with little success. Step scanning, after all, is a complicated concept and is cognitively demanding. It also requires coordinated use of both hands to control two switches and this is something very challenging for Jason. The invention of iPad, and the emergence of many new apps for communication caught my attention and I know Jason can use one, eventually, by simply touching a button on the iPad screen. So I asked Andy, who is into his 4th year of computer engineering, to make an app for Jason that does just what I want. And he, for the love of his little cousin, and the aspiration to do something meaningful to give back to the world, agreed to take up the challenge.

After months of preparation to familiarize with the App design software, programming and testing, the app was finally finished last month. Although it does not have a lot of fancy graphics and aesthetic elements, it does exactly what I need. Here is a video showing Jason using it. His touch-to-choose skill is not rock solid yet but he is getting there for sure.

I can't believe just a few months ago, this was just a possibility....but now it is a dream come true. Thanks to Apple for providing such an ingenious platform, and thanks of course to my very smart and soft-hearted nephew who did what he promised.  I foresee Jason will improve his touch-to-choose skills soon which will then prepare him for more advanced AAC device.