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.
Thursday, October 7, 2010
Monday, October 4, 2010
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.
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.
Tuesday, September 28, 2010
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.
Sunday, September 26, 2010
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.
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.
Friday, September 17, 2010
Quantum Reflex Integration
I cannot believe I just made another big-ticket purchase of almost $6000. This time for a scalar wave laser package. This is a hand-held cold laser device that is supposed to have therapeutic value. The laser (light) that comes out from the unit is supposed to stimulate functions at the cellular level, reverse stress, and bring about rejuvenation of tissues, cells, glands, etc.. More interestingly, Bonnie Brandes uses laser to carry out the reflex integration program. http://www.reflexintegration.net/QRI.html
Long time ago, I have read about the relation between retained reflexes and learning from Sally Goddard Blythe's book Reflexes, Learning And Behavior so I am familiar with the principles behind reflex integration. Simply said, if a child has any "retained" reflexes, i.e. reflexes that should only be present at a certain age, that means part of his nervous system has not completely matured and his learning and behaviour would be adversely affected in one way or another. These effects range from lack of attention, poor balance, hyperactivity, poor visual/auditory processing etc...Yet, after years of neurodevelopmental programming with Jason we can't seem to reach our goal. When my friend's baby came to our house the other day, I noticed the baby's Moro Reflex was exactly the same as Jason's startle response. It reminded me about reflex integration again and that I really have to work on it one way or another. Then comes Bonnie Brandes.
Using cold laser as a tool is unheard of but after hearing from many parents who all have very positive things to say, I decide to go for it. Yes it's expensive. But it works as multipurpose cuz it's supposed to alleviate back pain, neck pain, tendonitis etc...so it definitely has its value in my house (LOL). Oh, after hearing a friend who just spent $6000 on a set of allegedly chemical-free cookware set, I feel so much better about spending this money. So looking forward for it to arrive.
Long time ago, I have read about the relation between retained reflexes and learning from Sally Goddard Blythe's book Reflexes, Learning And Behavior so I am familiar with the principles behind reflex integration. Simply said, if a child has any "retained" reflexes, i.e. reflexes that should only be present at a certain age, that means part of his nervous system has not completely matured and his learning and behaviour would be adversely affected in one way or another. These effects range from lack of attention, poor balance, hyperactivity, poor visual/auditory processing etc...Yet, after years of neurodevelopmental programming with Jason we can't seem to reach our goal. When my friend's baby came to our house the other day, I noticed the baby's Moro Reflex was exactly the same as Jason's startle response. It reminded me about reflex integration again and that I really have to work on it one way or another. Then comes Bonnie Brandes.
Using cold laser as a tool is unheard of but after hearing from many parents who all have very positive things to say, I decide to go for it. Yes it's expensive. But it works as multipurpose cuz it's supposed to alleviate back pain, neck pain, tendonitis etc...so it definitely has its value in my house (LOL). Oh, after hearing a friend who just spent $6000 on a set of allegedly chemical-free cookware set, I feel so much better about spending this money. So looking forward for it to arrive.
Sunday, September 12, 2010
First week of school
First week of school was a short week (4 days). As everyone is trying to adjust to the new schedule, I expect things to be erractic. Indeed, the school bus that was supposed to pick him in the morning changed the pick-up time 3 times in 4 days. And the school bus that sent him home took as long as 50 minutes to finish the route. From my memory, this took longer than when Jason went to Bloorview School which is in midtown Toronto. I must admit I was a little concerned. First, it was a longer day than Jason can handle. Then, the long and bumpy ride was also a concern because Jason hates going on a wheelchair bus because every time the bus went over a bumpy part of the road, the sensory input to his system can be shocking and hurtful and he would cry big time...poor thing. My tender heart wants to take over the transportation responsibility, so Jason can have a comfortable ride to and from school, in his own van. But Tina my friend gave me a frank advice...that I should let Jason learn to tolerate and handle this. Especially if we are to return to Hong Kong since we won't be having our own vehicle in Hong Kong and Jason would be on a school bus anyway. This is true, so I just have to bite my lips and give Jason a little more time to learn and get used to the situation. Thank God when Jason returned home Friday, the very nice school bus driver told me she tried to go on the left lane to avoid the bumpy curbsides and Jason didn't cry that day.
Yes we all have to learn to adapt to new situations. And there maybe more ways to handle a situation than you think. By not taking it over in my own hands, I have now given others an opportunity to offer help, and Jason now gets to receive the love and care from another person. This is how a friendly community should live.
Yes we all have to learn to adapt to new situations. And there maybe more ways to handle a situation than you think. By not taking it over in my own hands, I have now given others an opportunity to offer help, and Jason now gets to receive the love and care from another person. This is how a friendly community should live.
Saturday, September 4, 2010
New school New energy
I received a call Monday from Jason's school principal that they have arranged Jason to transfer to a new school. This school was just a tad bit farther than the current one but it only took us about 17 minutes to drive there, not bad.
I told Jason he is going to a new school and guess what? He said No. He was nervous. Who said he doesn't have feelings? So I took him to the new school yesterday (without an appointment) cause I was told the teacher and the EA should be there. We went in the main entrance and was immediately greeted warmly by the vice principal. We were guided by the secretary to what would be his new classroom and in there are his new teacher Paul and 2 EA. They were so glad to see us and told me they were just saying how nice if they could meet the kids and parents before school so it doesn't get too overwhelmed on the first day of school. We felt our visit was warmly welcomed and not being thought of as intrusive. As we talked, I can feel the energy among them was positive, that they seemed to be working as a team of equal, and not with a hierarchy of ranks (teacher-nurse-EA, etc...). This is something quite different from the old school. I still remember one time when I told Jason Mrs. L (who was the EA) was his "teacher", (how would u explain otherwise the meaning of EA to a, say 4-year-old?)the actual teacher had the guts to correct me! Also, for the first time in Jason's school years, he was allowed to call the teacher by his name to make it easier for him. (I have been complaining to myself for a long time. It's just too hard to pronounce "Misus" and "Mister" for kids like Jason, not to mention the tongue-twisting last names.)
Anyway, as I handed in 5 pages of "All About Jason", the EA was so grateful and immediately studied them one item at a time, asking me questions as she went along. I felt good. Because at least I found someone who actually cares.
As the grown-ups were all standing up talking, Jason, while in his push chair, was paying careful attention with his neck and head up especially to Paul, giving a big smile every now and then. The EAs noticed and said Jason seemed to like his new teacher a lot. Yes, it did seem so. I was relieved.
Jason was particularly bright yesterday also, as if to show off what he can do. This is quite different from the sluggish silent little boy couple days ago (it so happened that I was having a bad cough those days and I wasn't paying a lot of attention to him). I told the teacher Jason can answer yes or no to simple questions. Then during the course of our conversation, the EA asked Jason if he was thirsty, and he said "yes". Later, I asked if he wants to go pee pee, he shook his head to demonstrate the "no". I asked him to say Hi Paul, he said it perfectly. The EA was quite impressed and told me Jason seems to be the highest functioning kid in class. When she said that, I was a little concerned that Jason will have no interaction with his peers. But then I figured, even in his old classroom, there was no true interaction among them if there were no constructive guidance from adults anyway. Besides, I begin to see this as a plus. With a relatively quiet class, Jason will have less distraction. He will not need to wear his headphone for computer work, which he hates. What's more, given his compromised processing speed and response rate, he doesn't have to compete to talk or answer a question. Instead, he will be given all the time he needs. Could this be my wishful thinking only? Maybe. But at least after the meeting yesterday, we all left with a smile and a sense of hope that this will be a better school year.
I told Jason he is going to a new school and guess what? He said No. He was nervous. Who said he doesn't have feelings? So I took him to the new school yesterday (without an appointment) cause I was told the teacher and the EA should be there. We went in the main entrance and was immediately greeted warmly by the vice principal. We were guided by the secretary to what would be his new classroom and in there are his new teacher Paul and 2 EA. They were so glad to see us and told me they were just saying how nice if they could meet the kids and parents before school so it doesn't get too overwhelmed on the first day of school. We felt our visit was warmly welcomed and not being thought of as intrusive. As we talked, I can feel the energy among them was positive, that they seemed to be working as a team of equal, and not with a hierarchy of ranks (teacher-nurse-EA, etc...). This is something quite different from the old school. I still remember one time when I told Jason Mrs. L (who was the EA) was his "teacher", (how would u explain otherwise the meaning of EA to a, say 4-year-old?)the actual teacher had the guts to correct me! Also, for the first time in Jason's school years, he was allowed to call the teacher by his name to make it easier for him. (I have been complaining to myself for a long time. It's just too hard to pronounce "Misus" and "Mister" for kids like Jason, not to mention the tongue-twisting last names.)
Anyway, as I handed in 5 pages of "All About Jason", the EA was so grateful and immediately studied them one item at a time, asking me questions as she went along. I felt good. Because at least I found someone who actually cares.
As the grown-ups were all standing up talking, Jason, while in his push chair, was paying careful attention with his neck and head up especially to Paul, giving a big smile every now and then. The EAs noticed and said Jason seemed to like his new teacher a lot. Yes, it did seem so. I was relieved.
Jason was particularly bright yesterday also, as if to show off what he can do. This is quite different from the sluggish silent little boy couple days ago (it so happened that I was having a bad cough those days and I wasn't paying a lot of attention to him). I told the teacher Jason can answer yes or no to simple questions. Then during the course of our conversation, the EA asked Jason if he was thirsty, and he said "yes". Later, I asked if he wants to go pee pee, he shook his head to demonstrate the "no". I asked him to say Hi Paul, he said it perfectly. The EA was quite impressed and told me Jason seems to be the highest functioning kid in class. When she said that, I was a little concerned that Jason will have no interaction with his peers. But then I figured, even in his old classroom, there was no true interaction among them if there were no constructive guidance from adults anyway. Besides, I begin to see this as a plus. With a relatively quiet class, Jason will have less distraction. He will not need to wear his headphone for computer work, which he hates. What's more, given his compromised processing speed and response rate, he doesn't have to compete to talk or answer a question. Instead, he will be given all the time he needs. Could this be my wishful thinking only? Maybe. But at least after the meeting yesterday, we all left with a smile and a sense of hope that this will be a better school year.
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