This morning, my husband dropped me off at the airport en route to Hong Kong. This is the first time since the birth of Jason that I had to leave them on their own for so long. It feels weird. I am just leaving them for 2 weeks, yet when I turned my head around after going through customs and found my husband looking out for me, waving goodbye, I felt like crying. In fact, my eyes got teary enough that I can no longer disguise it with a yawn or a sneeze, which i think everybody does. I had to go to the washroom and grab a kleenex to do the job. I know this is silly...but I already miss my family...after only 6 hours of being away from them.
While waiting for my flight at the airport, I felt like I have entered into this void, where there is no one that I care about, nor is there anyone who cares about my existence. I am here, surrounded by people, going to the same destination, wearing the same skin color, speaking the same language. There are so much in common, yet no connections among us. A sudden thought comes to mind. What is life without relations? What is life without love? What if there is no one in this world to relate to, no one to love? I feel blessed that I am a wife, a mother, a daughter, a sister, a friend....that I am living not in a void, but a universe of friends and family where we cherish one another's well being.
If you are wondering what the heck you are doing day in and day out, that you are disgruntled about the sacrifice you thought you've made for your family, now just be thankful that you have one. Be thankful that you have someone you love. It doesn't have a to be a romantic one. Think about your parents, your spouse, your children, your siblings, your best friends, or even your boss. Let's cherish relations. Let's celebrate love. Let's celebrate life.
Saturday, November 13, 2010
Saturday, November 6, 2010
Thoughts on "Unable", "Disabled"
Unable
For those of you who have children with disabilities, when someone asks you to introduce your child, what are some of the things you have in mind? I have been in one seminar where parents were asked to do just that. Surprisingly (or not?), 9 out of 10 started by saying "my child has _______(the disorder), he/she can't walk or stand by himself, he can't talk in complete sentence, he can't sit still, etc.....but he is a bundle of joy." Why did we start with what they are unable to do? Well, I never ski, I can't skate, I can't swim, I am afraid of height, I can't even ride a bicycle, but do these "represent" me? Not likely. There are way too many things each of us are unable to do and they have no bearings to our inner soul nor our personal achievement. By the same token, we should focus instead on what our children CAN do, and build upon their abilities. So from now on, think "able", not "unable".
Disabled
Every now and then, there was a revision of the terms used to describe people with various forms of disabilities to reflect the evolving social culture and what was considered socially appropriate. For example, back in the old days, the word "morons" was used to mean people with mental disabilities, which was then replaced by "idiots", and later the "mentally retardated". From current social standard, we would all consider the above terms disrespectful that often came with a negative connotation. The more acceptable term in use now is "intellectually disabled" or more vaguely so "developmentally delayed". These terms carry a relatively neutral meaning, which somehow affect how people think about this group of people which are very often misunderstood.
I appreciate whoever thought of using the word "dis-abled". The prefix "dis" could imply that one was "made unable" by the circumstances, which can be the ailment itself, or simply some environmental factors. Say just ten years ago, when there was no such concept of barrier free community, people in wheelchair would have had trouble going out of their house...not to say taking public transportation. But thanks to the collective effort of a lot of unknown heroes, who advocated for the rights and needs of these forgotten minority, many countries have incorporated barrier free community in their urban planning. So now, we are enjoying facilities such as ramp, automatic door, accessible public washroom, low-floor bus. In fact, for many people with physical disabilities alone, a wheelchair-friendly community is all they need to allow them to live and work independently, with a quality of life and contribution to the society no less than the able bodies.
My dream is that one day, the whole world will be built with people of all abilities in mind, so that the people with disabilities will be "able" to do what everyone else can do and the term "disabled" will become obsolete again, why not?
For those of you who have children with disabilities, when someone asks you to introduce your child, what are some of the things you have in mind? I have been in one seminar where parents were asked to do just that. Surprisingly (or not?), 9 out of 10 started by saying "my child has _______(the disorder), he/she can't walk or stand by himself, he can't talk in complete sentence, he can't sit still, etc.....but he is a bundle of joy." Why did we start with what they are unable to do? Well, I never ski, I can't skate, I can't swim, I am afraid of height, I can't even ride a bicycle, but do these "represent" me? Not likely. There are way too many things each of us are unable to do and they have no bearings to our inner soul nor our personal achievement. By the same token, we should focus instead on what our children CAN do, and build upon their abilities. So from now on, think "able", not "unable".
Disabled
Every now and then, there was a revision of the terms used to describe people with various forms of disabilities to reflect the evolving social culture and what was considered socially appropriate. For example, back in the old days, the word "morons" was used to mean people with mental disabilities, which was then replaced by "idiots", and later the "mentally retardated". From current social standard, we would all consider the above terms disrespectful that often came with a negative connotation. The more acceptable term in use now is "intellectually disabled" or more vaguely so "developmentally delayed". These terms carry a relatively neutral meaning, which somehow affect how people think about this group of people which are very often misunderstood.
I appreciate whoever thought of using the word "dis-abled". The prefix "dis" could imply that one was "made unable" by the circumstances, which can be the ailment itself, or simply some environmental factors. Say just ten years ago, when there was no such concept of barrier free community, people in wheelchair would have had trouble going out of their house...not to say taking public transportation. But thanks to the collective effort of a lot of unknown heroes, who advocated for the rights and needs of these forgotten minority, many countries have incorporated barrier free community in their urban planning. So now, we are enjoying facilities such as ramp, automatic door, accessible public washroom, low-floor bus. In fact, for many people with physical disabilities alone, a wheelchair-friendly community is all they need to allow them to live and work independently, with a quality of life and contribution to the society no less than the able bodies.
My dream is that one day, the whole world will be built with people of all abilities in mind, so that the people with disabilities will be "able" to do what everyone else can do and the term "disabled" will become obsolete again, why not?
Sunday, October 31, 2010
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.
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.
Sunday, October 24, 2010
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.
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.
Friday, October 15, 2010
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.
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.
Thursday, October 7, 2010
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.
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.
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.
Wednesday, August 25, 2010
Big change ahead
Never had I thought of returning to Hong Kong. I was not keen of the hot and humid weather, nor am I particularly fond of the general mentality of the people there if Hong Kong was a person. But a recent talk with my husband about the possibility of taking Jason back to Hong Kong for another treatment of tongue acupuncture sparked a full-blown research of the education system in HK, their medical and social welfare support for kids with special needs, even details such as accessibility of their transportation system etc... The more information I gathered, the more positive is the sign, which is contrary to what many people believe. (a general tendency is to think that Canada provides better social assistance, which is only partially true). I am very surprised by how much has changed over the past 10 years. What's the most important is that they have fully-supported special schools for each catchment area...which as I wrote in a previous post, is a more suitable setting for Jason than an "inclusive" environment yet lacking the support.
Other important issues such as job opportunities for us, places to live etc...will get sorted out in due course. In fact, I already have a plan in my mind, which is to start up my own Kindermusik Class in Hong Kong. Apparently, the enthusiasm in enrolling their children in extra-curricular classes is a phenomenon in Hong Kong unseen in other countries. I was a licensed educator back in 2004 and taught for about a year until I stayed home full-time with Jason again. After inquiring about my license status, I just found that I have a deadline until next year to renew my license without doing everything again. I can't help but praise the Lord for His foresight. What He has prepared me a few years back, is now becoming essential for my future. I don't know what will happen when we return to Hong Kong, but more and more signs are telling me our upcoming return is in His master plan. As long as we follow His guidance, He will continue to bless our family and that I am sure.
.
Other important issues such as job opportunities for us, places to live etc...will get sorted out in due course. In fact, I already have a plan in my mind, which is to start up my own Kindermusik Class in Hong Kong. Apparently, the enthusiasm in enrolling their children in extra-curricular classes is a phenomenon in Hong Kong unseen in other countries. I was a licensed educator back in 2004 and taught for about a year until I stayed home full-time with Jason again. After inquiring about my license status, I just found that I have a deadline until next year to renew my license without doing everything again. I can't help but praise the Lord for His foresight. What He has prepared me a few years back, is now becoming essential for my future. I don't know what will happen when we return to Hong Kong, but more and more signs are telling me our upcoming return is in His master plan. As long as we follow His guidance, He will continue to bless our family and that I am sure.
.
Sunday, August 15, 2010
Inclusive Education - does it really work?
Every one is talking about inclusion nowadays. The notion of "including" people with all abilities(disabilities) in the community....from schools, to recreation, etc. If inclusion is truly what it promised to be, it is a great concept. However, my experience of inclusion in the school environment was far from promising. Below is actually my email response to a lady, who is an active advocate for inclusive practices in Ontario schools.
I had one experience where my son and other DD kids (then primary 1) were "integrated" to a JK/SK class with me (volunteering) and an EA. The host teacher literally ignored us while the JK kids stared at our kids like they're aliens. This is totally understandable response for the kids, but I was appalled by the host teacher's reaction.
Another time, my son's class (then grade 5) was joining the 1st and 2nd graders to listen to a presentation about school bus safety. The presenter was purposefully avoiding eye contacts with our kids as if they were sick people. One of our boys was higher functioning and was making funny comments about the video presented. I deliberately turned up my voice and told the boy to speak up so everyone can hear. But the presenter again ignored him/me. I was so furious that I walked into the Principal's office right after telling her everything.
I mean.....is this what we are offering to our children? Is this true inclusion? By simply putting our kids with everyone else, without promoting mutual acceptance and understanding, what good does this do? For example, if we are to put our kids in a music class where everyone else is playing oboe and clarinets, but our kids are left sitting there and not allowed to do anything meaningful (not even rhythm sticks lest they would interfere), what is inclusion doing to them? Will this make them more hurtful if they can really feel?
I am more keen towards "reverse inclusion", where students are encouraged to visit their classroom regularly as reading buddy, or simply to help them. Yet, the teacher must "prepare" the innocent visitors by telling them about each kid, what they can do and what they can't and why etc...and to remove the fear factor first before any relationship can be built. Also, arrange other classroom teachers to teach their respective subjects in the special class...but adapted for the kids in the classroom (with input from the special ed teacher). Music teacher would do a rhythm session (or better still, music therapy type if class) for them, PE teacher would do adapted sports with them...this would make more sense to me.
And if these cannot be done, I would prefer segregated schools, where professionals and technology resources are better concentrated to support the needs of the kids. I like the Bloorview school or the Sunnyview model in Toronto board but we can't afford to live near that area.
In newly developed areas like York Region, schools are new, teachers are new... I remember the first time I met my son's grade 1 teacher, I asked him to let Jason "cruise along the furniture" to promote gross motor skills. He asked me "what do u mean by cruise along?". And unlike regular class teacher, you are stuck with the teacher until he/she decides to leave. If you have a good teacher, thank God...but if you have a bad one, what can we do as parents? For better or worse, till death do us part??
I may be wrong, but I suspect the problems with our school system could be that
1) special Ed teachers and assistants are not compensated enough for the extra work and challenges. There is no premium paid for being a "special Ed" teacher, other than the premium workload. So great teachers are better off teaching "regular" classes.
2) since nobody wants to take the position, so only the new grads or those who didn't have a full-time position to start with, picked up the job out of no choice. (this is the case for both of my son's teacher. G1-4, brand new teacher....DD class was his first job, G5, previous teacher transferred to normal class, school librarian turned into a teacher).
It has been a painful struggle in my fight for Jason's education, and I partially blame it for this "beautified" notion of inclusion....the lack of special schools in our area. If people keep thinking inclusion means putting the special needs into the mainstream, yet failing to promote the spirit of true inclusion school-wide, and provide the students with individualized support, then inclusion has failed our kids.....those who are more severely disabled.
I had one experience where my son and other DD kids (then primary 1) were "integrated" to a JK/SK class with me (volunteering) and an EA. The host teacher literally ignored us while the JK kids stared at our kids like they're aliens. This is totally understandable response for the kids, but I was appalled by the host teacher's reaction.
Another time, my son's class (then grade 5) was joining the 1st and 2nd graders to listen to a presentation about school bus safety. The presenter was purposefully avoiding eye contacts with our kids as if they were sick people. One of our boys was higher functioning and was making funny comments about the video presented. I deliberately turned up my voice and told the boy to speak up so everyone can hear. But the presenter again ignored him/me. I was so furious that I walked into the Principal's office right after telling her everything.
I mean.....is this what we are offering to our children? Is this true inclusion? By simply putting our kids with everyone else, without promoting mutual acceptance and understanding, what good does this do? For example, if we are to put our kids in a music class where everyone else is playing oboe and clarinets, but our kids are left sitting there and not allowed to do anything meaningful (not even rhythm sticks lest they would interfere), what is inclusion doing to them? Will this make them more hurtful if they can really feel?
I am more keen towards "reverse inclusion", where students are encouraged to visit their classroom regularly as reading buddy, or simply to help them. Yet, the teacher must "prepare" the innocent visitors by telling them about each kid, what they can do and what they can't and why etc...and to remove the fear factor first before any relationship can be built. Also, arrange other classroom teachers to teach their respective subjects in the special class...but adapted for the kids in the classroom (with input from the special ed teacher). Music teacher would do a rhythm session (or better still, music therapy type if class) for them, PE teacher would do adapted sports with them...this would make more sense to me.
And if these cannot be done, I would prefer segregated schools, where professionals and technology resources are better concentrated to support the needs of the kids. I like the Bloorview school or the Sunnyview model in Toronto board but we can't afford to live near that area.
In newly developed areas like York Region, schools are new, teachers are new... I remember the first time I met my son's grade 1 teacher, I asked him to let Jason "cruise along the furniture" to promote gross motor skills. He asked me "what do u mean by cruise along?". And unlike regular class teacher, you are stuck with the teacher until he/she decides to leave. If you have a good teacher, thank God...but if you have a bad one, what can we do as parents? For better or worse, till death do us part??
I may be wrong, but I suspect the problems with our school system could be that
1) special Ed teachers and assistants are not compensated enough for the extra work and challenges. There is no premium paid for being a "special Ed" teacher, other than the premium workload. So great teachers are better off teaching "regular" classes.
2) since nobody wants to take the position, so only the new grads or those who didn't have a full-time position to start with, picked up the job out of no choice. (this is the case for both of my son's teacher. G1-4, brand new teacher....DD class was his first job, G5, previous teacher transferred to normal class, school librarian turned into a teacher).
It has been a painful struggle in my fight for Jason's education, and I partially blame it for this "beautified" notion of inclusion....the lack of special schools in our area. If people keep thinking inclusion means putting the special needs into the mainstream, yet failing to promote the spirit of true inclusion school-wide, and provide the students with individualized support, then inclusion has failed our kids.....those who are more severely disabled.
Saturday, August 7, 2010
Reflection on the teaching journey
OK! The "setback" I experienced with teaching Jason turned out to be nothing but his way of telling me that this is not the kind of summer holiday he wants!!
That one evening, I lay in bed with him after his afternoon nap and started some heart-to-heart talk with him like we are equal. He seemed to understand totally what I said. When I asked him if he wants to learn reading words. He said No. I asked if he felt bored, he said yes. I asked if he wants to go out and have fun every day, he said yes!!
My heart felt a little tender with guilt and I told him I will not force him to read every day anymore. Instead I will take him out bowling and swimming, or to the library, etc.. he was so happy just hearing that. I know it may be obvious for many parents....that kids should be allowed to enjoy their summer. I even received sacarstic comment about how I put Jason to "non-stop learning" and therapy. But to a child with multiple disabilities, time is our biggest enemy. We can easily enjoy the fun-seeking moments, but who is to suffer the frustration of seeing your 11 year-old not telling A from B? Who is to lament on the lost ABR hours, who is supposed to help fight against his deteriorating structure from long period of wrong movement, and the pure force from nature? While we may be accused by the heartless bystanders for pushing too hard, but who is to battle that feeling of guilt, and suffer the consequences for not doing enough? During the days after our mother-and-son talk, I put a lot of thought into it and I must admit it takes a lot of "letting go" on my part. But I feel enlivened by the thought that if I were to "teach" him anything, I'd better make sure he "learns" in a way that is fun and appealing to him. Otherwise, I'd make the same mistake made by many notorious teachers, who have considered teaching an independent event of learning. This is so not true cuz teaching/learning should be an interactive, dynamic process - with constant review and adjustments according to the student's response/progress.
In the article "The Least Dangerous Assumption" written by Anne Donnellan, (as referenced in the blogpost http://teachinglearnerswithmultipleneeds.blogspot.com/2010/06/living-least-dangerous-assumption.html), she said "we should assume that poor performance is a result of inadequacy of instruction" but not inadequacy of the child. What she described as "the least dangerous assumption" is, the premise that (in the absence of evidence),instead of believing a child with disability "can't" do something, we should believe we have NOT yet found a way to teach him/her so a child with a disability "can". This is such a fundamental principle that should underlie the basics of special education. Unfortunately, that's not what I have been observing in Jason's 5 years of education. Oftentimes, I received comments about how "he" is not motivated to do things...."he" will not pay attention to the task..."he" is fixated on the computer switches, etc... Rarely did these commentators reflect on what "they" have or have not done. So when I met Jonathan Lee (the special ed service trainer from the school board, who gave us the Classroom Suite training in June), it was like a breath of fresh air. His passion in teaching managed to revive my hope in our education system once again. When he plainly and matter-of-factly questioned Jason's teacher (who was complaining how Jason would get more interested in the switch than the computer activity), "if the activity is interesting, why would he choose to play with then switch and not pay attention to the computer screen?", I almost wanted to stand up and applaud for his insight! Yes! The answer lies in the miserable fact that the teacher was still using the computer books I made for Jason 2 years ago and expected Jason to pay attention and learn!
Well, as a result of that meeting with Jonathan, it dawned on me that I should not settle with whatever we have. Jason is growing and learning and we can no longer afford to waste any more time in his education. Jonathan reminded me what a special ed teacher should be, and how a good teacher can change the life of a child. I told myself I will not compromise anymore but will advocate for Jason until he gets what he deserves.
Oh...sorry for the heavy post...that was not my intention.
Anyway, I'll wrap up by summarizing what we have done this past week. We visited a petting zoo just 5 minutes from our house. Jason saw (and said) peacock for the first time. He liked seeing the animals except for the extreme heat. Jason also had his first 1:1 swimming lesson with Aleena this Thursday whom we met at the Lebovic Pool in Stouffville. She supervised the aquatic program there for the special needs and she was amazing. We also went bowling with my friends' children and Jason had a lot of fun rolling the ball down the ramp. (He didn't really care if it hit a pin or not...just enjoying the process, not the results.) We didn't forget our learning at all...though I tried to keep it short and sweet. He still gets his reading session but in the evening. Tonight, he learned the word "bowling", he pointed to the word "yogurt". Yesterday, he learned the sound "D" from the Sesame Phonics Podcast (this alone makes me looove the iPad). He copied the sound and said "da" nice and clear!! He also enjoyed learning to trace the alphabets with the ABC Tracer app.($1.99 for full version). He is quite good with the letter A now cuz straight lines are more manageable. But when it comes to C and D, he is all over the place (LOL).
That's it for now, sorry for the long post.
That one evening, I lay in bed with him after his afternoon nap and started some heart-to-heart talk with him like we are equal. He seemed to understand totally what I said. When I asked him if he wants to learn reading words. He said No. I asked if he felt bored, he said yes. I asked if he wants to go out and have fun every day, he said yes!!
My heart felt a little tender with guilt and I told him I will not force him to read every day anymore. Instead I will take him out bowling and swimming, or to the library, etc.. he was so happy just hearing that. I know it may be obvious for many parents....that kids should be allowed to enjoy their summer. I even received sacarstic comment about how I put Jason to "non-stop learning" and therapy. But to a child with multiple disabilities, time is our biggest enemy. We can easily enjoy the fun-seeking moments, but who is to suffer the frustration of seeing your 11 year-old not telling A from B? Who is to lament on the lost ABR hours, who is supposed to help fight against his deteriorating structure from long period of wrong movement, and the pure force from nature? While we may be accused by the heartless bystanders for pushing too hard, but who is to battle that feeling of guilt, and suffer the consequences for not doing enough? During the days after our mother-and-son talk, I put a lot of thought into it and I must admit it takes a lot of "letting go" on my part. But I feel enlivened by the thought that if I were to "teach" him anything, I'd better make sure he "learns" in a way that is fun and appealing to him. Otherwise, I'd make the same mistake made by many notorious teachers, who have considered teaching an independent event of learning. This is so not true cuz teaching/learning should be an interactive, dynamic process - with constant review and adjustments according to the student's response/progress.
In the article "The Least Dangerous Assumption" written by Anne Donnellan, (as referenced in the blogpost http://teachinglearnerswithmultipleneeds.blogspot.com/2010/06/living-least-dangerous-assumption.html), she said "we should assume that poor performance is a result of inadequacy of instruction" but not inadequacy of the child. What she described as "the least dangerous assumption" is, the premise that (in the absence of evidence),instead of believing a child with disability "can't" do something, we should believe we have NOT yet found a way to teach him/her so a child with a disability "can". This is such a fundamental principle that should underlie the basics of special education. Unfortunately, that's not what I have been observing in Jason's 5 years of education. Oftentimes, I received comments about how "he" is not motivated to do things...."he" will not pay attention to the task..."he" is fixated on the computer switches, etc... Rarely did these commentators reflect on what "they" have or have not done. So when I met Jonathan Lee (the special ed service trainer from the school board, who gave us the Classroom Suite training in June), it was like a breath of fresh air. His passion in teaching managed to revive my hope in our education system once again. When he plainly and matter-of-factly questioned Jason's teacher (who was complaining how Jason would get more interested in the switch than the computer activity), "if the activity is interesting, why would he choose to play with then switch and not pay attention to the computer screen?", I almost wanted to stand up and applaud for his insight! Yes! The answer lies in the miserable fact that the teacher was still using the computer books I made for Jason 2 years ago and expected Jason to pay attention and learn!
Well, as a result of that meeting with Jonathan, it dawned on me that I should not settle with whatever we have. Jason is growing and learning and we can no longer afford to waste any more time in his education. Jonathan reminded me what a special ed teacher should be, and how a good teacher can change the life of a child. I told myself I will not compromise anymore but will advocate for Jason until he gets what he deserves.
Oh...sorry for the heavy post...that was not my intention.
Anyway, I'll wrap up by summarizing what we have done this past week. We visited a petting zoo just 5 minutes from our house. Jason saw (and said) peacock for the first time. He liked seeing the animals except for the extreme heat. Jason also had his first 1:1 swimming lesson with Aleena this Thursday whom we met at the Lebovic Pool in Stouffville. She supervised the aquatic program there for the special needs and she was amazing. We also went bowling with my friends' children and Jason had a lot of fun rolling the ball down the ramp. (He didn't really care if it hit a pin or not...just enjoying the process, not the results.) We didn't forget our learning at all...though I tried to keep it short and sweet. He still gets his reading session but in the evening. Tonight, he learned the word "bowling", he pointed to the word "yogurt". Yesterday, he learned the sound "D" from the Sesame Phonics Podcast (this alone makes me looove the iPad). He copied the sound and said "da" nice and clear!! He also enjoyed learning to trace the alphabets with the ABC Tracer app.($1.99 for full version). He is quite good with the letter A now cuz straight lines are more manageable. But when it comes to C and D, he is all over the place (LOL).
That's it for now, sorry for the long post.
Wednesday, July 28, 2010
Setback?
After the initial success in Jason's reading adventure, we have a couple more of those good days where Jason paid attention to his task and showed us he was able to match pictures to words. However, it seems like we are experiencing some minor setback at this time. The setback seems to be behavioral in nature. It's like him telling me he doesn't want to spend the rest of the summer doing this. That leads me to pause and rethink my teaching strategies. One thing I realized is that, by asking him to perform those tasks like matching, am I really "teaching" him or am I "testing" him. If I imagined myself to be in Jason's shoes, I would not be too happy if I showed you I CAN do something one day, yet was required to prove it again day after day. So what we have observed in the past few days was his refusal to pay visual attention to the cards, and random manipulation/fidgeting/mouthing of the cards. Before I have a solution to this problem, I introduced some new manual/fine motor tasks for him, like stacking cups and counting with objects. This seems to engage him better but I still have to find better ways to "teach" literacy.
I have made a computer Book using Classroom Suite 4 and he really likes it. A second one is in the making. We are also experimenting with errorless writing using step scanning. Step scanning is a means of menu selection using 2 switches, one switch to scan through the options, another to "pick up" the choice. But one limitation of this program is the absence of user-specific setting to avoid "sticky" buttons. So as Jason hits the button, the program flies through the options making it a messy and confusing scan. This is a major drawback in making this a clean learning experience. I have yet to find more alternatives. As the Chinese saying goes, "if one wants to perfect the task, one should sharpen his tools". I hope I will be enlightened with some new ways some day with the help of better software.
I have made a computer Book using Classroom Suite 4 and he really likes it. A second one is in the making. We are also experimenting with errorless writing using step scanning. Step scanning is a means of menu selection using 2 switches, one switch to scan through the options, another to "pick up" the choice. But one limitation of this program is the absence of user-specific setting to avoid "sticky" buttons. So as Jason hits the button, the program flies through the options making it a messy and confusing scan. This is a major drawback in making this a clean learning experience. I have yet to find more alternatives. As the Chinese saying goes, "if one wants to perfect the task, one should sharpen his tools". I hope I will be enlightened with some new ways some day with the help of better software.
Monday, July 19, 2010
Happiness is.......
Happiness is going on the ferris wheel with your giggling son;
Happiness is looking for your beloved child on a spinning carousel;
Happiness is taking a 6-month old on a train ride even though she has no clue what's going on;
Happiness is screaming your heart out on a moving roller coaster with your kiddos;
Happiness is giving your child a shoulder to lean on when he gets a little insecure in the dark tunnel.
Happiness is simple, isn't it?
We took Jason to the Fantasy Fair this past Saturday which is an indoor amusement park on the west side of Toronto, right inside a shopping mall. Jason has extreme aversion to heat and the sun, so on a hot summer day like this (31C), we thought this was a brilliant alternative to the zoo or Ontario Place (even though Barney is performing live there!).
The first pleasant surprise upon arrival is that they actually offer a generous 50% discount to people with disabilities, and free admission for one escort. So we only had to pay $7.75 for two day passes.
We chose to hop on the choochoo train as our first ride because it is an easy ride with no spinning or bumping - a nice warm-up for the sensory system. But not long after I sat on the train with Jason's head on my shoulder, I started to have flashbacks of what was exactly 2 years ago, in the same park, except that Daddy was the one on the train with him, while I could only watch, sitting on a bench.....
Two summers ago, while I was still in the midst of cycles after cycles of chemotherapy, we sent Jason to a summer camp for children/youths with developmental disabilities for a week. That day was a field trip to Fantasy Fair and we decided we would join them on the school bus to keep him company. I still remember I was so weak that just looking at the ferris wheel would make me want to faint. Totally bald, I was wearing a hat, a pale complexion, and a fragile body. I was sitting on a bench most of the time, while watching Jason going on rides with his Daddy, feeling helpless.
A sudden surge of emotions made my eyes teary and I couldn't help but giving Jason a tight squeeze...as if I'd lose him if I did not. When you went through a near-death experience, you'd look at life with a whole new perspective. I know just how precious it is to be healthy, to be able to hold hands with my husband while pushing Jason's chair with our other hands. I was enjoying every moment of our time strolling along the park and the past has only made the presence all the more precious.
I climbed on every single ride Jason wanted to go - the spinning balloon, carousel, ferris wheel, roller coaster, and the train - my heart filled with contentment the whole day feeling fortunate, blessed, and grateful for everything in life.
Happiness is when you accidentally caught your reflection in the mirror, and found that you have been wearing a smile all along.
Happiness is tucking your son to bed, and to find him smiling in his dream.
Happiness is looking for your beloved child on a spinning carousel;
Happiness is taking a 6-month old on a train ride even though she has no clue what's going on;
Happiness is screaming your heart out on a moving roller coaster with your kiddos;
Happiness is giving your child a shoulder to lean on when he gets a little insecure in the dark tunnel.
Happiness is simple, isn't it?
We took Jason to the Fantasy Fair this past Saturday which is an indoor amusement park on the west side of Toronto, right inside a shopping mall. Jason has extreme aversion to heat and the sun, so on a hot summer day like this (31C), we thought this was a brilliant alternative to the zoo or Ontario Place (even though Barney is performing live there!).The first pleasant surprise upon arrival is that they actually offer a generous 50% discount to people with disabilities, and free admission for one escort. So we only had to pay $7.75 for two day passes.
We chose to hop on the choochoo train as our first ride because it is an easy ride with no spinning or bumping - a nice warm-up for the sensory system. But not long after I sat on the train with Jason's head on my shoulder, I started to have flashbacks of what was exactly 2 years ago, in the same park, except that Daddy was the one on the train with him, while I could only watch, sitting on a bench.....
Two summers ago, while I was still in the midst of cycles after cycles of chemotherapy, we sent Jason to a summer camp for children/youths with developmental disabilities for a week. That day was a field trip to Fantasy Fair and we decided we would join them on the school bus to keep him company. I still remember I was so weak that just looking at the ferris wheel would make me want to faint. Totally bald, I was wearing a hat, a pale complexion, and a fragile body. I was sitting on a bench most of the time, while watching Jason going on rides with his Daddy, feeling helpless.
A sudden surge of emotions made my eyes teary and I couldn't help but giving Jason a tight squeeze...as if I'd lose him if I did not. When you went through a near-death experience, you'd look at life with a whole new perspective. I know just how precious it is to be healthy, to be able to hold hands with my husband while pushing Jason's chair with our other hands. I was enjoying every moment of our time strolling along the park and the past has only made the presence all the more precious.
I climbed on every single ride Jason wanted to go - the spinning balloon, carousel, ferris wheel, roller coaster, and the train - my heart filled with contentment the whole day feeling fortunate, blessed, and grateful for everything in life.
Happiness is when you accidentally caught your reflection in the mirror, and found that you have been wearing a smile all along.
Happiness is tucking your son to bed, and to find him smiling in his dream.
Wednesday, July 14, 2010
Jason "read" Daddy!!!
Note how I said Jason "read" Daddy, not "said" Daddy.
I am so proud of my boy!!!
Here is a video showing the moment. Thanks to Beth who was right there to capture it.
In the beginning of this video, I was just asking Jason to put the pictures next to the matching 2"x8" name cards....without much expectation he will do anything. In fact, right before this video, I was doing the same thing but with some flash cards with words and pictures from his "personal ABC" collection. It must be because of this "interesting" change that his "busy-hand syndrome" took over his cognitive space big time. He was preoccupied with fidgeting, mouthing and throwing the cards, and wasn't paying attention at all. I had to use the old trick (cheerio) but only got random results. So I thought I should revert to the 2"x8" cards and if he still doesn't pay attention, I will call it a day. What you see in the video was the first attempt after the switch back.
I must thank Aaron (our volunteer) for bringing back his attention because when he saw Aaron's picture, it's like he got recharged and said 哥哥 (meaning "brother") with excitement. Yet if you noticed, he was trying to place Aaron's picture to where the "Daddy" card was, so I was expecting a disappointment. This is when Jason suddenly said "Daddy" and got us all laughing in disbelief. Before I can calm myself down from the excitement, he said "c-oh-oh" (that's how he said cheerio). Apparently he was trying to remind us for his reward!! It was way too hilarious and we were laughing almost hysterically.
I must call this the most rewarding teaching experience I ever had with him. At one point, I was so frustrated with his lack of cognitive progress and his seemingly non-existent ability to "learn", that I was googling if there indeed is such a thing called "non-educable mental retardation". But the brightness in his eyes, and my innate stubbornness told me not to give up. I think I am beginning to see some light in his ever-puzzling development. Just like the quote from Sir Winston Churchill on my blog, despite all the hardship and frustrations, "this, so far from discouraging, only adds to the joy and glory of the climb."
I am so proud of my boy!!!
Here is a video showing the moment. Thanks to Beth who was right there to capture it.
In the beginning of this video, I was just asking Jason to put the pictures next to the matching 2"x8" name cards....without much expectation he will do anything. In fact, right before this video, I was doing the same thing but with some flash cards with words and pictures from his "personal ABC" collection. It must be because of this "interesting" change that his "busy-hand syndrome" took over his cognitive space big time. He was preoccupied with fidgeting, mouthing and throwing the cards, and wasn't paying attention at all. I had to use the old trick (cheerio) but only got random results. So I thought I should revert to the 2"x8" cards and if he still doesn't pay attention, I will call it a day. What you see in the video was the first attempt after the switch back.
I must thank Aaron (our volunteer) for bringing back his attention because when he saw Aaron's picture, it's like he got recharged and said 哥哥 (meaning "brother") with excitement. Yet if you noticed, he was trying to place Aaron's picture to where the "Daddy" card was, so I was expecting a disappointment. This is when Jason suddenly said "Daddy" and got us all laughing in disbelief. Before I can calm myself down from the excitement, he said "c-oh-oh" (that's how he said cheerio). Apparently he was trying to remind us for his reward!! It was way too hilarious and we were laughing almost hysterically.
I must call this the most rewarding teaching experience I ever had with him. At one point, I was so frustrated with his lack of cognitive progress and his seemingly non-existent ability to "learn", that I was googling if there indeed is such a thing called "non-educable mental retardation". But the brightness in his eyes, and my innate stubbornness told me not to give up. I think I am beginning to see some light in his ever-puzzling development. Just like the quote from Sir Winston Churchill on my blog, despite all the hardship and frustrations, "this, so far from discouraging, only adds to the joy and glory of the climb."
Friday, July 9, 2010
Volunteers, Blessings, Angels.
How are these 3 words related? Well, they equal each other!
Starting this week, I have the good fortune of having 2 young volunteers coming over to help. One is Kelly, third-year English major in University, the other is Aaron who is the son of my church-mate. It was totally not within my plan to recruit volunteers this year. Yet, they appeared at the right moment just like Godsend. God sends angels to everyone every now and then but sometimes we may not notice. But these are too obvious to miss and I am so grateful to God for His blessings. Since both of them told me they want to be a teacher, and Jason is such a challenging student(LOL), I hope this summer will provide them with a good learning opportunity, and I will try my best to make it worthwhile for their effort.
These past 4 days of summer program was rewarding to say the least. It proves to me and Beth (so good I have another witness) that Jason really understands more than we give him credit for. I continue to work on word recognition, especially mommy, daddy, his name, Beth and other familiar names. What's interesting is, when I ask him to just point or select the one card that says, say "Jason", he tends to pick on one randomly, which looks more like he wants to grab my card; if I place 2 word cards horizontally in the pocket chart and ask him to put the correct pictures on top, he'd appear to be doing so randomly as well; however, if I place the cards vertically, one over the other, he then matches the cards cleanly and beautifully. Because of his ataxic arm movement, a motor command to raise it up to the top card vs the bottom card requires a lot of exaggerated effort, so you know this cannot be random. This happened so many times that I have to give credit for it. I can also do this without food reward now and I am starting to introduce words (love) so he can start making sentences already.
Other than literacy, I am also training Jason with assistive technology - i.e. using technology to assist in learning such as reading, writing, even math, etc. Since children with disability oftentimes do not have the fine motor skills to control a mouse, turn the page of a book, or write with a pen, we train them to use a switch which is essentially a button connected to the computer to replace the mouse. Yet with only one switch, it can perform at best the equivalent of a left click. But what about navigation across page? This can be done by adding another switch which helps scan through all the components of the page, then using the other switch to select. In simple terms, it is not unlike selecting a track from the CD.
While I am proud to say Jason has graduated from the single-switch stage (that includes using the switch for simple cause-and-effect activity, or to advance a PowerPoint slideshow), the path to 2-switch use (technically, its called "step-scanning") is not an easy one. I truly appreciate the help of the therapists/consultants at CTN (Children's Treatment Network) who lent me the equipment and software that allow me to create my own activities and take my time training Jason at home. Although Jason is still quite far from fully understanding it (after all, step scanning is a complicated concept - imagine setting a program with your old VCR!!) he is beginning to understand each switch has a different function...and would press the correct button with prompts, lots of prompts I mean. :p
Yet, I am so glad Jason is learning finally ....albeit slowly. But every day I spend so closely with him is like a discovery process. It gives me new ideas about life, new possibilities of his potential, and renewed strength from God.
Oh, here are a couple of noteworthy "achievements" of Jason today that I'd like to journal for my own reference. (I wish I could capture them on a video but each time I have my camera ready, he'll will looking at the camera - problem for Mr. Photogenic)
- When Aaron visited us today, Jason said "he-nno" (hello)...apparently a surprise for Aaron who thought Jason is unable to do this (based on his observation from church)
- Jason said he does not want to crawl with Aaron. He wants to do to computer by saying "com-pu-ter"
- Then, he said "MacDonald" to play the MacDonald's toy set with Aaron.
- We then played "go-fish". This time, Aaron gave Jason lots of time to say "go-eeeee" and he did that 3 times to Aaron. He also gave the cards to Aaron when I told him to. He even picked the correct card!
- After we are done, I asked him to pull off the picture symbol for "go-fish" meaning it's done. He did it again accurately.
- In case you're curious, this is how our morning schedule looks like, and I use this as a choice board too for him to choose his activities. (iPad being one of his favorite!)
These are like top-line performances that I normally would not dare to expect. Therefore I must journal this in my blog for future reference, and more importantly, as a page of sweet memory.
Starting this week, I have the good fortune of having 2 young volunteers coming over to help. One is Kelly, third-year English major in University, the other is Aaron who is the son of my church-mate. It was totally not within my plan to recruit volunteers this year. Yet, they appeared at the right moment just like Godsend. God sends angels to everyone every now and then but sometimes we may not notice. But these are too obvious to miss and I am so grateful to God for His blessings. Since both of them told me they want to be a teacher, and Jason is such a challenging student(LOL), I hope this summer will provide them with a good learning opportunity, and I will try my best to make it worthwhile for their effort.
These past 4 days of summer program was rewarding to say the least. It proves to me and Beth (so good I have another witness) that Jason really understands more than we give him credit for. I continue to work on word recognition, especially mommy, daddy, his name, Beth and other familiar names. What's interesting is, when I ask him to just point or select the one card that says, say "Jason", he tends to pick on one randomly, which looks more like he wants to grab my card; if I place 2 word cards horizontally in the pocket chart and ask him to put the correct pictures on top, he'd appear to be doing so randomly as well; however, if I place the cards vertically, one over the other, he then matches the cards cleanly and beautifully. Because of his ataxic arm movement, a motor command to raise it up to the top card vs the bottom card requires a lot of exaggerated effort, so you know this cannot be random. This happened so many times that I have to give credit for it. I can also do this without food reward now and I am starting to introduce words (love) so he can start making sentences already.
Other than literacy, I am also training Jason with assistive technology - i.e. using technology to assist in learning such as reading, writing, even math, etc. Since children with disability oftentimes do not have the fine motor skills to control a mouse, turn the page of a book, or write with a pen, we train them to use a switch which is essentially a button connected to the computer to replace the mouse. Yet with only one switch, it can perform at best the equivalent of a left click. But what about navigation across page? This can be done by adding another switch which helps scan through all the components of the page, then using the other switch to select. In simple terms, it is not unlike selecting a track from the CD.
While I am proud to say Jason has graduated from the single-switch stage (that includes using the switch for simple cause-and-effect activity, or to advance a PowerPoint slideshow), the path to 2-switch use (technically, its called "step-scanning") is not an easy one. I truly appreciate the help of the therapists/consultants at CTN (Children's Treatment Network) who lent me the equipment and software that allow me to create my own activities and take my time training Jason at home. Although Jason is still quite far from fully understanding it (after all, step scanning is a complicated concept - imagine setting a program with your old VCR!!) he is beginning to understand each switch has a different function...and would press the correct button with prompts, lots of prompts I mean. :p
Yet, I am so glad Jason is learning finally ....albeit slowly. But every day I spend so closely with him is like a discovery process. It gives me new ideas about life, new possibilities of his potential, and renewed strength from God.
Oh, here are a couple of noteworthy "achievements" of Jason today that I'd like to journal for my own reference. (I wish I could capture them on a video but each time I have my camera ready, he'll will looking at the camera - problem for Mr. Photogenic)
- When Aaron visited us today, Jason said "he-nno" (hello)...apparently a surprise for Aaron who thought Jason is unable to do this (based on his observation from church)
- Jason said he does not want to crawl with Aaron. He wants to do to computer by saying "com-pu-ter"
- Then, he said "MacDonald" to play the MacDonald's toy set with Aaron.
- We then played "go-fish". This time, Aaron gave Jason lots of time to say "go-eeeee" and he did that 3 times to Aaron. He also gave the cards to Aaron when I told him to. He even picked the correct card!
- After we are done, I asked him to pull off the picture symbol for "go-fish" meaning it's done. He did it again accurately.
- In case you're curious, this is how our morning schedule looks like, and I use this as a choice board too for him to choose his activities. (iPad being one of his favorite!)
These are like top-line performances that I normally would not dare to expect. Therefore I must journal this in my blog for future reference, and more importantly, as a page of sweet memory.
Monday, July 5, 2010
First day of summer "home school"
I started rehearsing for Jason's home school schedule last Friday. I pulled a few word cards from Little Reader ( thinking we'll start with sight word recognition. I showed him the words balloon and teddy bear and let him reveal the picture behind the word cards. I must have made the revealing (especially the teddy bear card) over-interesting, he was so fixated on that card and kept vocalizing teddy bear, apparently ignoring my instruction. I was quite frustrated as my first teaching attempt this summer fail to start off with a smooth sail. Then, I thought maybe I could change this into an opportunity. I kept switching the sides of the 2 cards and asked him to point/touch the one that says teddy bear, planning to reinforce his choice by giving the "reveal" he craved for. Thought it would work huh? Of course not! If it's that easy, it's not my son! He kept trying to touch whatever card presented on his right regardless and attempted to perform the reveal on his own. It's the right side because his right arm was free from the orientation in which he was seated in the chair. After a few trials, I decided I have to divert him to something else....something more obvious, and less chance of error. So I presented him with 2 flash cards with his picture and mine. No word recognition, just plain "which picture is Jason?" kind of game. Guess what? He picked whatever picture on the right side again. I used the next obvious: food reward. I would reward a correct answer with a cheerio (gluten free version of course) but I only got random success.
Try to imagine yourself in my position. I was frustrated and clueless as to what to do next. Shall I abort my first lesson and maybe start on a "better" day? Thank God for sending his comfort to keep my patience in that split second. I grabbed the table-top pocket chart that was on the table and decided to give it a try. I put the 2"x11" word cards with his name and "mommy" inside the transparent pockets. I then asked him to match by putting the pictures on top of the respective names. This time, he did it beautifully. To make sure it's not a random event, I switched the word cards to the other side, shuffled the picture face down, and asked him to pick one. He matched them perfectly again. Despite his shaky arm movement because of his ataxia, there is no question that his eye and hand movements were directed towards the correct side. Cheerio moment!!
I've come to an assumption that "inserting" a match may have led to more success because it diverts him from the urge to fidget and manipulate the word cards. In other words, "touching" or "grabbing" is an open-end task while "inserting" is a close-end task, thus giving a more reliable result.
I continued with the same game using Beth and daddy's names/pictures. He did it 100% on 2 trials again. I was so contended and grateful for not quitting earlier and I gladly finished that session with a break, followed by some floor time so Jason gets to move around a bit.
I will write more about what other things we did that afternoon when I am back next time but I can tell you that it was another great, encouraging experience for me.
Try to imagine yourself in my position. I was frustrated and clueless as to what to do next. Shall I abort my first lesson and maybe start on a "better" day? Thank God for sending his comfort to keep my patience in that split second. I grabbed the table-top pocket chart that was on the table and decided to give it a try. I put the 2"x11" word cards with his name and "mommy" inside the transparent pockets. I then asked him to match by putting the pictures on top of the respective names. This time, he did it beautifully. To make sure it's not a random event, I switched the word cards to the other side, shuffled the picture face down, and asked him to pick one. He matched them perfectly again. Despite his shaky arm movement because of his ataxia, there is no question that his eye and hand movements were directed towards the correct side. Cheerio moment!!
I've come to an assumption that "inserting" a match may have led to more success because it diverts him from the urge to fidget and manipulate the word cards. In other words, "touching" or "grabbing" is an open-end task while "inserting" is a close-end task, thus giving a more reliable result.
I continued with the same game using Beth and daddy's names/pictures. He did it 100% on 2 trials again. I was so contended and grateful for not quitting earlier and I gladly finished that session with a break, followed by some floor time so Jason gets to move around a bit.
I will write more about what other things we did that afternoon when I am back next time but I can tell you that it was another great, encouraging experience for me.
Thursday, July 1, 2010
Video Shooting Day at Loblaws
Today is the first day of summer holiday. We started it by doing something quite interesting. Wayne at Presidents Choice Children's Charity invited us over for a video shoot at Queen's Quay Loblaws to help raise funds in support of the Kids Breakfast Program. As usual, we were picked up by the nice people from Universal Motions and they all turned out to be nice and helpful and fun to talk to.
Today's event involved almost 20 children among which 5 children have special needs. We were served pancakes and eggs and cereals while the camera was capturing the faces of the children.
Meanwhile, I brought Jason his own gluten free breakfast which included scrambled duck egg, rice toast, rice crispy with chocolate soy milk. Quite a menu there eh? From what I can see, he is the only one at our table who actually finished the breakfast!
We were seated with a group of younger kids mostly girls. Ever since I quit teaching Kindermusik, i haven't had the luxury of interacting with typical "talking" kids anymore. So I must admit I had a lot of fun talking to them cuz they are so cute and so innocent! Espcially 5 year old Anastasia who said her favorite ice-cream flavor is "pink"!!!!
As breakfast came to a close, the kids loosened up and Katy the young chef teacher came to talk to the kids at each table. She is so nice and reminds me of a kindergarten teacher. She really knows the "talk TO the kids, not AT the kids" drill and she just knows what kids love! As the kids were all talking about their favorite things to do for the summer, Jason raised his voice and his arm forward to catch her attention. His eyes were following her and was apparently paying attention to what she said. I was so happy to see this cuz it's so different from the Jason I observed in his boring morning circle at school!!! If only someone like Katy's demeanor can be Jason's teacher that would be a dream come true! But is this so hard to find?
I know I had sidetracked a bit cuz lately I've been thinking a lot about Jason's schooling options. After last week's all-day training for Classroom Suite, I decided I am done with Miss B. She doesn't deserve our time anymore so I wrote a letter to the Principal that if she is not leaving next year, we are. We are supposed to hear from the Principal in late August. Let's keep our fingers crossed.
Oh, back to the breakfast event. After breakfast, Katy played some games with the kids and had each of them make a chef hat decorated with crayons and stickers. I put a butterfly sticker on Jason's nose and he was laughing hilariously, almost non-stoppable. Then he said "bunny". I didn't understand and thought he said "Barney" but in the wrong context. He repeated it again and I knew he actually said it's "funny". This is such a memorable moment because it's probably one of his first attempts to share his feelings with me about a situation and that he really understands the meaning of "funny". It's such an immense joy to watch him enjoy his moments. I am so grateful to the Lord that despite his disabilities, he shares my fun-loving character and a great sense of humor, which I am sure will help him/us navigate the rest of our journey a lot easier.
Today's event involved almost 20 children among which 5 children have special needs. We were served pancakes and eggs and cereals while the camera was capturing the faces of the children.
Meanwhile, I brought Jason his own gluten free breakfast which included scrambled duck egg, rice toast, rice crispy with chocolate soy milk. Quite a menu there eh? From what I can see, he is the only one at our table who actually finished the breakfast!
We were seated with a group of younger kids mostly girls. Ever since I quit teaching Kindermusik, i haven't had the luxury of interacting with typical "talking" kids anymore. So I must admit I had a lot of fun talking to them cuz they are so cute and so innocent! Espcially 5 year old Anastasia who said her favorite ice-cream flavor is "pink"!!!!
As breakfast came to a close, the kids loosened up and Katy the young chef teacher came to talk to the kids at each table. She is so nice and reminds me of a kindergarten teacher. She really knows the "talk TO the kids, not AT the kids" drill and she just knows what kids love! As the kids were all talking about their favorite things to do for the summer, Jason raised his voice and his arm forward to catch her attention. His eyes were following her and was apparently paying attention to what she said. I was so happy to see this cuz it's so different from the Jason I observed in his boring morning circle at school!!! If only someone like Katy's demeanor can be Jason's teacher that would be a dream come true! But is this so hard to find?
I know I had sidetracked a bit cuz lately I've been thinking a lot about Jason's schooling options. After last week's all-day training for Classroom Suite, I decided I am done with Miss B. She doesn't deserve our time anymore so I wrote a letter to the Principal that if she is not leaving next year, we are. We are supposed to hear from the Principal in late August. Let's keep our fingers crossed.
Oh, back to the breakfast event. After breakfast, Katy played some games with the kids and had each of them make a chef hat decorated with crayons and stickers. I put a butterfly sticker on Jason's nose and he was laughing hilariously, almost non-stoppable. Then he said "bunny". I didn't understand and thought he said "Barney" but in the wrong context. He repeated it again and I knew he actually said it's "funny". This is such a memorable moment because it's probably one of his first attempts to share his feelings with me about a situation and that he really understands the meaning of "funny". It's such an immense joy to watch him enjoy his moments. I am so grateful to the Lord that despite his disabilities, he shares my fun-loving character and a great sense of humor, which I am sure will help him/us navigate the rest of our journey a lot easier.
Wednesday, June 23, 2010
Jason can read....
I did not use an exclamation mark in the title, nor did I use a question mark to show my disbelief. Instead, I use ...... Because it's a story yet to be told.
For the longest time, I know Jason can read. By that, I don't mean he can read a book or sentence or read it out. For those who are not familiar with the concept, reading is an input activity, but reading out loud is an output activity, requiring more complex involvement of the brain. We often made the mistake of asking our kids to read out a word as proof that he knows the word. This is often not necessary especially in kids with speech motor impairment. So how do we know if Jason can read or what?
I'd make word cards with big fonts on white background, then showed him two at a time. I would then ask if which one says "book" for example and he would use his hand to reach for it or point at it. One may say then it could be a random event. Well, I am not the kind of mother who would choose to convince myself of some imaginary achievement of my child cuz there is no obvious benefit for doing so. I use what I learned in psychology research and set up an environment where randomness, personal preference, and other distracting conditions are not present to obtain the most objective observation. If indeed those conditions are present, then they won't count.
In recent months, after several exciting improvement that's nothing short of a breakthrough, he showed me again that he can read. Although what he read (recognized)was limited to his inventory of familiar words, he showed us surely that he was looking at the choice of words, then picked the correct one. I retested it by switching the position of the word card to make sure he was not fixating on a particular side, or that it was not a result of hand preference. He scanned the cards once again and picked the correct card for me. Beth was with me and she was in awe.
As I said. He did this a long time ago but he never did it consistently and thus, we were not able to build on this word-reading ability. But there is something in him that makes me believe it is different this time.
I am so grateful to the Lord to see such progress in Jason albeit little. Like Leonid worded it, let's think "inch-pebble" instead of "milestone"....and there will many more to come, and we will be counting them one tiny pebble at a time.
For the longest time, I know Jason can read. By that, I don't mean he can read a book or sentence or read it out. For those who are not familiar with the concept, reading is an input activity, but reading out loud is an output activity, requiring more complex involvement of the brain. We often made the mistake of asking our kids to read out a word as proof that he knows the word. This is often not necessary especially in kids with speech motor impairment. So how do we know if Jason can read or what?
I'd make word cards with big fonts on white background, then showed him two at a time. I would then ask if which one says "book" for example and he would use his hand to reach for it or point at it. One may say then it could be a random event. Well, I am not the kind of mother who would choose to convince myself of some imaginary achievement of my child cuz there is no obvious benefit for doing so. I use what I learned in psychology research and set up an environment where randomness, personal preference, and other distracting conditions are not present to obtain the most objective observation. If indeed those conditions are present, then they won't count.
In recent months, after several exciting improvement that's nothing short of a breakthrough, he showed me again that he can read. Although what he read (recognized)was limited to his inventory of familiar words, he showed us surely that he was looking at the choice of words, then picked the correct one. I retested it by switching the position of the word card to make sure he was not fixating on a particular side, or that it was not a result of hand preference. He scanned the cards once again and picked the correct card for me. Beth was with me and she was in awe.
As I said. He did this a long time ago but he never did it consistently and thus, we were not able to build on this word-reading ability. But there is something in him that makes me believe it is different this time.
I am so grateful to the Lord to see such progress in Jason albeit little. Like Leonid worded it, let's think "inch-pebble" instead of "milestone"....and there will many more to come, and we will be counting them one tiny pebble at a time.
Wednesday, June 16, 2010
Solid progress
I am hesitating when I typed the word "solid" in the title. Nothing is solid when we talked about Jason's progress. But lately, I am seeing some 'real' gains....gains that stay (fingers crossed), gains that could potentially form a base upon which to build more gains.
Earlier on, I've written about that little breakthrough, that Jason was finally able to answer "yes" and "no" meaningfully. He is still doing that. With this, we can start to have a little more communication with him. For example, I like shopping with him now. We were at Walmart the other day, and I asked if he wants to buy something for daddy on Father's Day. He said Yes. I picked a white soccer jersey and a black one (exact same style). He said yes to the white and no to the black. I repeated again by switching the position of the colors, he still picked white. Then I held up the white one and randomly picked a skeleton head T-shirt and asked him if this is good. He said no!
Then, I asked if he wants to go to McDonalds. (That's a must-go each time we go to Walmart. He just went through the golden arch, and we talked about what to eat without really eating....except when we were in New York.) He said yes of course. Then I asked if he wants a filet o-fish. First he said yes. Then he shook his head. What about fries? I asked. He said no. That was quite strange but since we were there just after lunch, I thought I'd ask if he was too full. He said yes. That moment was like magic. I was so touched by his ability to keep up the communication with me, and I couldn't help but wondering...some of those brain cells must have waken up...finally.
Last night, I was teaching him some color words. Red...green...blue.... what's better exercise than to do color sorting while we go through those words? So we took out the long forgotten Lego blocks, and the colored Huggies wet wipes boxes on the shelf and started doing sorting - 2 colors at a time. We reminded him a little in the beginning...then he did it with 90% accuracy for the red vs green sort. The red vs blue was 60%. But this was done when he was tired. Beth was with me and I can tell she shared the same excitement as me. We were never able to do this with him properly. A few years back when we did this, he either threw the blocks, chewed them, or dropped them in the colored boxes randomly.
The long-waited maturation is finally happening....albeit slowly. I am thinking it must be g-therapy, together with the MB12 vitamins that we've started just about a month ago. In any case, I am thanking God for keeping our family. I hope I can spend more time this summer to work with him in order to capitalize on those gains. But I know I tend to have too many ideas without much organization and follow-through.
I am praying to God to help me for things that I'm lacking and give us a rewarding, yet enjoyable summer.
Earlier on, I've written about that little breakthrough, that Jason was finally able to answer "yes" and "no" meaningfully. He is still doing that. With this, we can start to have a little more communication with him. For example, I like shopping with him now. We were at Walmart the other day, and I asked if he wants to buy something for daddy on Father's Day. He said Yes. I picked a white soccer jersey and a black one (exact same style). He said yes to the white and no to the black. I repeated again by switching the position of the colors, he still picked white. Then I held up the white one and randomly picked a skeleton head T-shirt and asked him if this is good. He said no!
Then, I asked if he wants to go to McDonalds. (That's a must-go each time we go to Walmart. He just went through the golden arch, and we talked about what to eat without really eating....except when we were in New York.) He said yes of course. Then I asked if he wants a filet o-fish. First he said yes. Then he shook his head. What about fries? I asked. He said no. That was quite strange but since we were there just after lunch, I thought I'd ask if he was too full. He said yes. That moment was like magic. I was so touched by his ability to keep up the communication with me, and I couldn't help but wondering...some of those brain cells must have waken up...finally.
Last night, I was teaching him some color words. Red...green...blue.... what's better exercise than to do color sorting while we go through those words? So we took out the long forgotten Lego blocks, and the colored Huggies wet wipes boxes on the shelf and started doing sorting - 2 colors at a time. We reminded him a little in the beginning...then he did it with 90% accuracy for the red vs green sort. The red vs blue was 60%. But this was done when he was tired. Beth was with me and I can tell she shared the same excitement as me. We were never able to do this with him properly. A few years back when we did this, he either threw the blocks, chewed them, or dropped them in the colored boxes randomly.
The long-waited maturation is finally happening....albeit slowly. I am thinking it must be g-therapy, together with the MB12 vitamins that we've started just about a month ago. In any case, I am thanking God for keeping our family. I hope I can spend more time this summer to work with him in order to capitalize on those gains. But I know I tend to have too many ideas without much organization and follow-through.
I am praying to God to help me for things that I'm lacking and give us a rewarding, yet enjoyable summer.
Wednesday, June 9, 2010
iPad as a multi-purpose device for special needs kids
I have been playing with my iPad for about a week now and I must admit I am amazed by how much it can do and how well it can deliver its contents. As I said earlier, I am never an "early adopter" for either medicine, technology, or electronic gadgets. So for me to take the leap forward and purchase an iPad after it's been in existence for only 2 months is quite "not me".
One major reason is that I can see its potential as a communication device for Jason. I know there are apps already available that will turn it into a very affordable AAC device (the app is called "Proloquo2Go"). However, knowing Jason may not be ready for it yet, I thought I was going to wait for a little longer. But after viewing several apps for early learning over the internet, I just can't contain my excitement. Lately, I also stumpled upon this website, and found an amazing list of apps which are great for kids with special needs.
Here are some of the apps we've downloaded for Jason and he (we) seem to love them at first sight.
Dr. Seuss's ABC book - this was a classic for early literacy skills and I have introduced to Jason many of Dr. Seuss's books. However, Jason never seems to be engaged by any of his books despite the clean contrast pages and fun-to-read rhymes. But he loves the audio version of it and is giving a little smile all the way while reading the book. Besides, it's free!
My First Words - One can easily tell it follows the same principles of Glen Doman Method. What's worth mentioning is that their choice of images are superb - salient, unambiguous images on a white background. They also allow different modes and speed of presentation. The only thing I would want to see is if it allows users to pause after say 5 images within each category, instead of flashing all images in a single run. A trial version is available for free, while the full version costs only $0.99
Alphabet Tracing - Great app for learning to trace alphabet. For me, it's another way to expose Jason to alphabets, which is supposed to be a goal in his IEP. It is free too.
When it comes to alphabet learning, I have something to say. When Jason was 3, I used to bring a small doodle board with us everywhere and we would write a letter or number and ask him to name it. He was so smart back then and was naming most of the alphabets even in random order. Ironically, it was since he went to school that he started losing some of those skills. We thought, oh maybe it's too easy for him so he didn't want to answer anymore? Then since he was 4-5, I started to teach him whole words following the Doman method. It makes sense to me that alphabets have no meaning to them, but words that are found in their environment are. So my focus since then has been teaching words, rather than alphabets, and slowly increasing his inventory of vocabs. While not showing full-blown reading ability, he has shown us many many times that he can recognize words when given a choice, such as crackers, TV, Wiggles, Barney, mommy, etc....It was until this year, that the SLP from the CTN suggested that we started introducing alphabets again to prepare him to read. I have no objection about that, but I did mention to them that I will still use my whole-word method at home...while taking opportunities to reinforce his alpha-learning.
So with our new iPad, this alpha-learning experience is made easier and more motivating for Jason. For example, yesterday, I first did the Dr. Seuss ABC book with him, then listened to the Alphabet songs I previously downloaded, then traced the letters with him....all on the iPad. One would argue, why spend so much money on a device while you can do everything on paper, a real book etc etc...The reason is that it helps overcome some of Jason's physical limitations that have been obstacles to his learning. Since he is an audio learner, having the read-along enhances his ability to follow the story. His poor fine motor skills are also not required because the digital book can be set to turn the page automatically, or manually (by just touching anywhere of the screen). What's more is that he does not need to tackle the formidable task of holding a pencil. He can just use his finger to scribble or trace the lines. I can hold his hand just under the fingers and he would stick out his index finger to do the job. Most important of all, is that he is a manipulative little guy. If he sees anything in front of him, he'd like to pick on it, play with it, mouth it, throw it. Now that I only have one iPad in his hands, I have less physical objects to handle, and less distractions to deal with. Oh, it's pretty drool-resistant too. I just used a dry cloth and wiped it off. Of course, it's still safer to protect it with a screen protector. I have ordered one with the case/stand, and will be delivered hopefully soon.
I can't wait for more apps to become available for iPad and of course, the choice-making app designed by Andy (my nephew).
Don't you just looove technology when it does something like this?
One major reason is that I can see its potential as a communication device for Jason. I know there are apps already available that will turn it into a very affordable AAC device (the app is called "Proloquo2Go"). However, knowing Jason may not be ready for it yet, I thought I was going to wait for a little longer. But after viewing several apps for early learning over the internet, I just can't contain my excitement. Lately, I also stumpled upon this website, and found an amazing list of apps which are great for kids with special needs.
Here are some of the apps we've downloaded for Jason and he (we) seem to love them at first sight.
Dr. Seuss's ABC book - this was a classic for early literacy skills and I have introduced to Jason many of Dr. Seuss's books. However, Jason never seems to be engaged by any of his books despite the clean contrast pages and fun-to-read rhymes. But he loves the audio version of it and is giving a little smile all the way while reading the book. Besides, it's free!
My First Words - One can easily tell it follows the same principles of Glen Doman Method. What's worth mentioning is that their choice of images are superb - salient, unambiguous images on a white background. They also allow different modes and speed of presentation. The only thing I would want to see is if it allows users to pause after say 5 images within each category, instead of flashing all images in a single run. A trial version is available for free, while the full version costs only $0.99
Alphabet Tracing - Great app for learning to trace alphabet. For me, it's another way to expose Jason to alphabets, which is supposed to be a goal in his IEP. It is free too.
When it comes to alphabet learning, I have something to say. When Jason was 3, I used to bring a small doodle board with us everywhere and we would write a letter or number and ask him to name it. He was so smart back then and was naming most of the alphabets even in random order. Ironically, it was since he went to school that he started losing some of those skills. We thought, oh maybe it's too easy for him so he didn't want to answer anymore? Then since he was 4-5, I started to teach him whole words following the Doman method. It makes sense to me that alphabets have no meaning to them, but words that are found in their environment are. So my focus since then has been teaching words, rather than alphabets, and slowly increasing his inventory of vocabs. While not showing full-blown reading ability, he has shown us many many times that he can recognize words when given a choice, such as crackers, TV, Wiggles, Barney, mommy, etc....It was until this year, that the SLP from the CTN suggested that we started introducing alphabets again to prepare him to read. I have no objection about that, but I did mention to them that I will still use my whole-word method at home...while taking opportunities to reinforce his alpha-learning.
So with our new iPad, this alpha-learning experience is made easier and more motivating for Jason. For example, yesterday, I first did the Dr. Seuss ABC book with him, then listened to the Alphabet songs I previously downloaded, then traced the letters with him....all on the iPad. One would argue, why spend so much money on a device while you can do everything on paper, a real book etc etc...The reason is that it helps overcome some of Jason's physical limitations that have been obstacles to his learning. Since he is an audio learner, having the read-along enhances his ability to follow the story. His poor fine motor skills are also not required because the digital book can be set to turn the page automatically, or manually (by just touching anywhere of the screen). What's more is that he does not need to tackle the formidable task of holding a pencil. He can just use his finger to scribble or trace the lines. I can hold his hand just under the fingers and he would stick out his index finger to do the job. Most important of all, is that he is a manipulative little guy. If he sees anything in front of him, he'd like to pick on it, play with it, mouth it, throw it. Now that I only have one iPad in his hands, I have less physical objects to handle, and less distractions to deal with. Oh, it's pretty drool-resistant too. I just used a dry cloth and wiped it off. Of course, it's still safer to protect it with a screen protector. I have ordered one with the case/stand, and will be delivered hopefully soon.
I can't wait for more apps to become available for iPad and of course, the choice-making app designed by Andy (my nephew).
Don't you just looove technology when it does something like this?
Friday, June 4, 2010
New York New York
Just came back from our week-long trip to New York. The main purpose of the trip is to have ABM lessons with Marcy Lindheimer, who was second only to Anat Baniel herself. I don't expect Marcy to do magic over the course of 6 days but in just 2 lessons, Marcy got Jason to sit cross-legged (Indian style) while keeping his back tall. Jason's pelvis has been so stiff lately that he hasn't been in this position for a long time. Marcy said 'continuity' is crucial if Jason were to benefit from this therapy and she suggested that I go see a local practitioner and only go to her occasionally. I know if I could do this, this will be perfect. For so many years, I just know that ABR and ABM would work wonderfully together for Jason. ABR works on structure through restoring the biomechanical properties of the body, whereas ABM works on functions, "teaching" the child how to access his body, given the limitations, to provide ease of movement. It's difficult to explain both therapies in a simple sentence but they're both gentle, forceless, and stress-free. To me, Anat Baniel and Leonid Blyum are two of the most brilliant human beings that I've ever met. (see Jason enjoying his lesson with Marcy)
Now that's it for therapies. The New York trip turns out to be kind of a vacation for the family, the first one in many many years. Instead of driving 8 hours there, we opted to fly which turned out to be a great decision. New York parking was quite ridiculous and you can see cars parallel-parked bumper to bumper. So without a car, we end up walking a lot and it's great! New York has so much to see and we've covered the entire Broadway Avenue from 86th Street to 44th Street. That's from upper west Manhattan to Times Square! Jason loved it too. I have caught him turning his head several times in his pushchair..apparently something interesting caught his attention.
On our flight to New York. Jason also got to sit in the pilot seat. Yes, you hear me right...theeee Pilot - the guy who flies the plane! We were the last ones to get off the plane because our pushchair was not delivered to the door yet. While waiting at the front rows, I saw the cockpit open so I asked the pilot, who was standing at the door, if I could just take a picture. He said yes...and even asked if Jason wanted to sit in the pilot seat. Of course, Jason didn't care much about that....he's still cognitively not there yet. But without waiting a second, I said YES for him. There he is...
There is more I'd like to share about our trip...among which, the iPad!! They were out of stock in the stores and I was on the wait-list. I was not expecting to get one before I left New York...but I did. I downloaded a few free apps for pre-schoolers and Jason seems to love it at first sight. Will share more next time.
Sunday, May 23, 2010
Special Needs Acronyms
In the world of special needs, there is a list of acronyms so frequently used in our repertoire that I often mistakenly assume that they're as universally understood as "ASAP". So I thought, maybe it's a good idea to compile such a list in my blog so that if you are talking to me and one of these acronyms pop out from my mouth, at least you'll know what I mean.
AAC - Augmentative Alternative Communication
ABA - Applied Behavioral Analysis
ADHD - Attention Deficit Hyperactive Disorder
ASD - Autism Spectrum Disorder
AT - Assistive Technology
CP - Cerebral Palsy
EA - Education Assistant
IEP - Individual Education Plan
IPRC - Identification, Placement, and Review Committee
OT - Occupational Therapy
PSW - Personal Support Worker
PT - Physical Therapy
SLP - Speech Language Pathologist (which is used interchangeably with Speech Therapist)
SPD - Sensory Processing Disorder
AAC - Augmentative Alternative Communication
ABA - Applied Behavioral Analysis
ADHD - Attention Deficit Hyperactive Disorder
ASD - Autism Spectrum Disorder
AT - Assistive Technology
CP - Cerebral Palsy
EA - Education Assistant
IEP - Individual Education Plan
IPRC - Identification, Placement, and Review Committee
OT - Occupational Therapy
PSW - Personal Support Worker
PT - Physical Therapy
SLP - Speech Language Pathologist (which is used interchangeably with Speech Therapist)
SPD - Sensory Processing Disorder
Thursday, May 20, 2010
Yes! he did it again
Yes...it wasn't jinxed!
Just now, we finished all the work of the day and let Jason choose his DVD (among the 4 favorite ones). I made it more challenging for him by topping up the Yes/No response with word cards. I first asked him verbally, he said yes to Wiggles, Then I gave him 8"x3" word cards of "Wiggles" (left) vs "Big Blue House" (right), then he chose "Wiggles" by reaching for the card. I started playing the DVD and paused after one song....turned off the TV, then asked him verbally if he wants to play with the computer or continue with DVD. He said "DDD" verbally. So I asked again which DVD he wants to watch...he said "Wiggles". I then put the word cards again this time Barney on the left and Wiggles on the right. He point at Wiggles again.
I must say this is not the first time he can do this...but as everyone knows, he is never consistent. But seeing his ability to discriminate sight words that are meaningful to him, I am thinking if we can do more activities that encourage discrimination. I must admit he's not great with matching or recognizing individual alphabets or numerals, but maybe sight word matching will work???
Over the summer, I'd really like to capitalize on these gains because really, over the course of his development, none of the gains were ever solid enough to form basis on which newer/more complex skills are built. I feel like running on a treadmill....exhausted, but not going anywhere.
Just now, we finished all the work of the day and let Jason choose his DVD (among the 4 favorite ones). I made it more challenging for him by topping up the Yes/No response with word cards. I first asked him verbally, he said yes to Wiggles, Then I gave him 8"x3" word cards of "Wiggles" (left) vs "Big Blue House" (right), then he chose "Wiggles" by reaching for the card. I started playing the DVD and paused after one song....turned off the TV, then asked him verbally if he wants to play with the computer or continue with DVD. He said "DDD" verbally. So I asked again which DVD he wants to watch...he said "Wiggles". I then put the word cards again this time Barney on the left and Wiggles on the right. He point at Wiggles again.
I must say this is not the first time he can do this...but as everyone knows, he is never consistent. But seeing his ability to discriminate sight words that are meaningful to him, I am thinking if we can do more activities that encourage discrimination. I must admit he's not great with matching or recognizing individual alphabets or numerals, but maybe sight word matching will work???
Over the summer, I'd really like to capitalize on these gains because really, over the course of his development, none of the gains were ever solid enough to form basis on which newer/more complex skills are built. I feel like running on a treadmill....exhausted, but not going anywhere.
Monday, May 17, 2010
Another breakthrough? (please.....don't jinx it)
Jason has always been a puzzle to all the professionals that look after him because of his inconsistent performance making it difficult to assess his true potential. For one very basic thing, he was not even able to give yes/no answers consistently to simple choice-making questions. He was considered piggy-backing on whatever was asked in the question. e.g. Do you want cracker? Yes or No? - NO. Do you want crackers? No or Yes? - YES.
Honestly, although he didn't quite achieve 100% consistency at home, we have no problem understanding what he wants. Partly because we know him too well. Partly because we are not rigid on what he has to say. Be it yes or no, or the name of the actual item in question (e.g. cracker), or simply reach out for it, we will be satisfied with his response and respect his 'choice'. We also know to be consistent that if he says no, it means no, and we will remove that item away from him (even though he actually wants it). Yet, at school, this seems to be a constant problem. Year after year, you will find "being able to answer Yes and No consistently 5-10 times a day" under the communication goals on his IEP. This is quite frustrating when you think about how he actually spent the past 5 years in school. I have been fighting for more academics, pre-reading skills, sight word introduction, but none seems to share my enthusiasm. So that leaves me, as Jason's mother, to be the one teaching the rest at home. Sadly, I do not have enough consistent evidence to prove to everyone that Jason can do it...not yes/no, not reading...even though he can do both 'sometimes', and only 'sometimes'.
However, last night....that long-coveted breakthrough happened. Well...I am really not sure if this is just another random episode, or a breakthrough indeed....but if it is...I'd like to remember this day.
Well...to back track a little bit, the CTN team has been suggesting a change in the way we talk to Jason. Instead of expecting him to answer either "yes" or "no", we would accept a "yes" as his choice and a lack of response as "no". But last night, instead of asking "Do you want cracker, Yes or No?", I just ask him "Do you want cracker, Yes?" (with an inflection). I've suggested this to the school before and have done it at home in the past but we got inconsistent results. But since dinner last night, he's been giving 100% accurate response to all my questions. As far as I can recall, below are the questions I asked:
- Do u want mango juice? Yes? - yes
- Do u want water? Yes? - shake head (of course! he hates drinking water!)
- Do u want to play the Barney counting game? Yes? - yes
- After we played the games several times, I asked the previous question again, he shook his head, but still say Barney. So I asked if he actually meant he wants to watch the Barney video, Yes? He said yes.
The "conversation" went back and forth several times over the night and involved nothing but a simple yes or no and some head-shaking but it's so perfectly done, that I feel like I'm on cloud nine.
Readers who do not have children with special needs would probably wonder why such a basic task (of saying yes/no) was regarded as such a feat. But the truth is, without this very basic skill, any further attempts to establish meaningful communication is almost impossible. If indeed what Jason did last night can be repeated consistently, there is a true potential that I can train him to use a communication device. While just 2 years ago, I may still be thinking of a $7000 Tango, but now, we can easily obtain a $500 iPad. Andy (my nephew) will be working on a choice-making app for Jason so he can practise more choice making on the device. I love technology when it does good stuff like this.
I so look forward to that day.
Honestly, although he didn't quite achieve 100% consistency at home, we have no problem understanding what he wants. Partly because we know him too well. Partly because we are not rigid on what he has to say. Be it yes or no, or the name of the actual item in question (e.g. cracker), or simply reach out for it, we will be satisfied with his response and respect his 'choice'. We also know to be consistent that if he says no, it means no, and we will remove that item away from him (even though he actually wants it). Yet, at school, this seems to be a constant problem. Year after year, you will find "being able to answer Yes and No consistently 5-10 times a day" under the communication goals on his IEP. This is quite frustrating when you think about how he actually spent the past 5 years in school. I have been fighting for more academics, pre-reading skills, sight word introduction, but none seems to share my enthusiasm. So that leaves me, as Jason's mother, to be the one teaching the rest at home. Sadly, I do not have enough consistent evidence to prove to everyone that Jason can do it...not yes/no, not reading...even though he can do both 'sometimes', and only 'sometimes'.
However, last night....that long-coveted breakthrough happened. Well...I am really not sure if this is just another random episode, or a breakthrough indeed....but if it is...I'd like to remember this day.
Well...to back track a little bit, the CTN team has been suggesting a change in the way we talk to Jason. Instead of expecting him to answer either "yes" or "no", we would accept a "yes" as his choice and a lack of response as "no". But last night, instead of asking "Do you want cracker, Yes or No?", I just ask him "Do you want cracker, Yes?" (with an inflection). I've suggested this to the school before and have done it at home in the past but we got inconsistent results. But since dinner last night, he's been giving 100% accurate response to all my questions. As far as I can recall, below are the questions I asked:
- Do u want mango juice? Yes? - yes
- Do u want water? Yes? - shake head (of course! he hates drinking water!)
- Do u want to play the Barney counting game? Yes? - yes
- After we played the games several times, I asked the previous question again, he shook his head, but still say Barney. So I asked if he actually meant he wants to watch the Barney video, Yes? He said yes.
The "conversation" went back and forth several times over the night and involved nothing but a simple yes or no and some head-shaking but it's so perfectly done, that I feel like I'm on cloud nine.
Readers who do not have children with special needs would probably wonder why such a basic task (of saying yes/no) was regarded as such a feat. But the truth is, without this very basic skill, any further attempts to establish meaningful communication is almost impossible. If indeed what Jason did last night can be repeated consistently, there is a true potential that I can train him to use a communication device. While just 2 years ago, I may still be thinking of a $7000 Tango, but now, we can easily obtain a $500 iPad. Andy (my nephew) will be working on a choice-making app for Jason so he can practise more choice making on the device. I love technology when it does good stuff like this.
I so look forward to that day.
Sunday, May 16, 2010
Beth is gone, Pain is back
Beth, my live-in caregiver has been away for just 2 weeks and we are feeling the impact...big time. My good old pain in the neck and back and legs due to inflammation of the muscles, joints, tendons are all coming back. The extreme fatigue that hit me reminded me cruelly that I was a cancer a patient....that I am still recovering.....that I'd better take things easy.
I've always appreciated Beth's arrival to our family, her hard work, her attitude, her "simple-ness", her good heart. I did not wait until now to know how valuable she is to our family. But there were times when I thought we could still run this house without a helper. After all, the additional monthly expense is quite considerable. However, after just 2 weeks without her, we had to seriously reconsider this possibility. What's going to happen when Beth leaves after the contract expires? Can't even imagine.
I admire all of you parents out there who are working moms, AND at the same time taking care of the basic daily needs of your special children, AND doing ABR on them. Kudos to you. This week, I had to give in to my pains and stop all ABR effort other than the machines. After all, I had to save myself before I can save my child right?
I've always appreciated Beth's arrival to our family, her hard work, her attitude, her "simple-ness", her good heart. I did not wait until now to know how valuable she is to our family. But there were times when I thought we could still run this house without a helper. After all, the additional monthly expense is quite considerable. However, after just 2 weeks without her, we had to seriously reconsider this possibility. What's going to happen when Beth leaves after the contract expires? Can't even imagine.
I admire all of you parents out there who are working moms, AND at the same time taking care of the basic daily needs of your special children, AND doing ABR on them. Kudos to you. This week, I had to give in to my pains and stop all ABR effort other than the machines. After all, I had to save myself before I can save my child right?
Wednesday, May 12, 2010
Visit to the Naturopath
Went to the naturopath just 20min away from us. Her name is Patricia Rennie and we got her name from another parent of a BI child. She has a pleasant, humble personality and it's not easy to like her. Compared to Dr. Gannage, she is like heaven to hell. This is our second visit after 2 months of having some of the supplements she recommended. Jason's elimination pattern during the night seems to be changing (wake up only once to pee, instead of twice) and his bowel movement seems to be more self-reliant. Our last time using the suppository was April 22, so let's keep our fingers crossed.
She then did what's called Applied Kinesiology muscle testing with me being the surrogate tester. She had me touch Jason's shoulder with one hand, then lift up the other arm horizontally. The purpose of the test is to see which of Jason's organs are weak. The same test was then performed to test which food/products/supplements are good for him, and which should be avoided. The way she interpreted how my arm responded, however, was a little confusing. From my past experience, if my arm went weak, the product tested was supposed to create negative impact for the patient. For many times, my arm didn't really fall down all the way, and sometimes they did stay strong. She didn't interpret each response to me in details but told me it's not that straight forward...cuz it depends on whether the product is just a food for consumption, or something that's supposed to 'treat'. In that case, we may be looking for a 'neutral' response. Obviously, the visit will not include a lecture on Applied Kinesiology so I decided to read more about it. This book maybe a good start.
I know this muscle testing thing was considered a quackery but hey, same with Qigong and ABR, lack of understanding leads to ignorant opposition. Besides, she is not 'healing' thru muscle testing...she is just using it as a diagnostic tool. She was of the opinion that Jason should avoid gluten, cow dairy, almonds, peanuts, but we may be easy on soy and even eggs (what? eggs?) Wai was in total disbelief because the IgG test with Dr. Gannage showed clearly that eggs are allergens. She also prescribed several homeopathic remedies for detox, and Methylcobalamin (MB12) at my request, but I need to check out with Dr. Oswal in case it has any contraindication with g-therapy. http://www.g-therapy.org/
I am going to keep a positive mind and see what further changes we will see in Jason.
She then did what's called Applied Kinesiology muscle testing with me being the surrogate tester. She had me touch Jason's shoulder with one hand, then lift up the other arm horizontally. The purpose of the test is to see which of Jason's organs are weak. The same test was then performed to test which food/products/supplements are good for him, and which should be avoided. The way she interpreted how my arm responded, however, was a little confusing. From my past experience, if my arm went weak, the product tested was supposed to create negative impact for the patient. For many times, my arm didn't really fall down all the way, and sometimes they did stay strong. She didn't interpret each response to me in details but told me it's not that straight forward...cuz it depends on whether the product is just a food for consumption, or something that's supposed to 'treat'. In that case, we may be looking for a 'neutral' response. Obviously, the visit will not include a lecture on Applied Kinesiology so I decided to read more about it. This book maybe a good start.
I know this muscle testing thing was considered a quackery but hey, same with Qigong and ABR, lack of understanding leads to ignorant opposition. Besides, she is not 'healing' thru muscle testing...she is just using it as a diagnostic tool. She was of the opinion that Jason should avoid gluten, cow dairy, almonds, peanuts, but we may be easy on soy and even eggs (what? eggs?) Wai was in total disbelief because the IgG test with Dr. Gannage showed clearly that eggs are allergens. She also prescribed several homeopathic remedies for detox, and Methylcobalamin (MB12) at my request, but I need to check out with Dr. Oswal in case it has any contraindication with g-therapy. http://www.g-therapy.org/
I am going to keep a positive mind and see what further changes we will see in Jason.
Tuesday, May 11, 2010
Happy mother's day and Happy birthday to Jason
It is a family tradition now to celebrate both Mothers day and Jason's birthday together because the day he was born always fall on Mother's Day week. In fact, back in 1999, he was born just in time to make me a mother...and this never fails to give me a very special feeling and fond memory of the past.
We spent Mother's Day with a busy schedule. Started with church, then went to the cemetery to my mom's grave, back home for a quick munch so I can start making Jason's special gluten free birthday cake, party started at 5:00 when my sisters and brother came over. Jason was still having a nap when all the actions were happening. After he woke up, I put him on the potty, only to be surrounded later by my sisters who took their turn giving the presents. He definitely looked like the King of the world waiting for offerings from his "followers"....only that the throne turned out to be his good old potty/commode chair.
After dinner, we sang the birthday song and cut the cakes and I can tell he was enjoying the time. Since last year, he no longer cried at the birthday song and cheers from the group, which used to be too overwhelming for his super-sensitive ears. Instead, he gave a gentle smile as if he was really into the loving and fun-filled atmosphere. Yah! This is the kind of response one would expect from a typical kid and I am seeing it happening with my very own Jason. Life is wonderful, isn't it? Thank God for life.
We spent Mother's Day with a busy schedule. Started with church, then went to the cemetery to my mom's grave, back home for a quick munch so I can start making Jason's special gluten free birthday cake, party started at 5:00 when my sisters and brother came over. Jason was still having a nap when all the actions were happening. After he woke up, I put him on the potty, only to be surrounded later by my sisters who took their turn giving the presents. He definitely looked like the King of the world waiting for offerings from his "followers"....only that the throne turned out to be his good old potty/commode chair.
After dinner, we sang the birthday song and cut the cakes and I can tell he was enjoying the time. Since last year, he no longer cried at the birthday song and cheers from the group, which used to be too overwhelming for his super-sensitive ears. Instead, he gave a gentle smile as if he was really into the loving and fun-filled atmosphere. Yah! This is the kind of response one would expect from a typical kid and I am seeing it happening with my very own Jason. Life is wonderful, isn't it? Thank God for life.
Thursday, May 6, 2010
Changes already?!
After only about 2 weeks of ball rolling, we already noticed some changes in his mobility. There is nothing that WOWs yet, (like from not walking to walking....an off-topic: I remember when I started actively doing treatments/therapy for Jason, I would be approached with questions like "did he walk yet?" "did he get better?" each time I came back from a trip...as if walking is a switch that can be turned on and off. In face of questions like these, I was usually awed by the simple-mind that the inquirer had....and even though I may have given them a response (whatever that is), deep down, it wasn't fun at all because the questions were simply too insensitive.)
Anyway, Jason is definitely a happier boy now that he can toss and turn with better ease in bed. He would roll himself up on his quads in bed, then raise his arms, dive them forward so he would go on a prone position...but only a few seconds, then repeat again. I don't know why he's doing it but it's certainly a lot of fun to watch him enjoying himself. He is crawling with greater confidence too. Although he is still wobbly, he now has more courage to explore and instead of following the usual route along the hallway, he would detour to the bedroom at the other end of the living room...or open a cabinet door or two to find inspirations of the next mischief. Compared to just a while ago when he would be virtually 'locked' in whatever position we safely put him (sitting on his bum) as if he knew his body wasn't up for the challenge...not even crawling.
Anyway, Jason is definitely a happier boy now that he can toss and turn with better ease in bed. He would roll himself up on his quads in bed, then raise his arms, dive them forward so he would go on a prone position...but only a few seconds, then repeat again. I don't know why he's doing it but it's certainly a lot of fun to watch him enjoying himself. He is crawling with greater confidence too. Although he is still wobbly, he now has more courage to explore and instead of following the usual route along the hallway, he would detour to the bedroom at the other end of the living room...or open a cabinet door or two to find inspirations of the next mischief. Compared to just a while ago when he would be virtually 'locked' in whatever position we safely put him (sitting on his bum) as if he knew his body wasn't up for the challenge...not even crawling.
Tuesday, April 27, 2010
Rolling into action
I have finally organized all the new exercises, and reviewed the assessment DVD, getting geared up for the new rounds of ABR. On the first day, Jason was so cooperative that he let us do 2 hours of ABR (ball-rolling plus manual) on him without a wiggle. The flow of the day went so well that I got into this wishful thinking mode that from now on, days will go on like this. It turns out that any expectation of that sort is nothing but realistic.
We were lucky if we could get an hour of ball-rolling done on his abdomen while he is sleeping. But the back? Don't even think about it. I really don't know why Jason was so cooperative when he's in the Montreal training room. Pure pressure?
ABR aside, Jason has been quite responsive lately. He would be reading the Little Reader binder with me (http://www.brillkids.com/teach-reading/index.php) following words I said, laughing and giggling as I made funny sounds. He is getting humorous too...cracking into his characteristic laughs that are contagious. Ever since his potty debut this February, he finds having a BM in the potty funny. He would laugh when he hears his own poop drop, laugh when he hears his own fart, laugh when he says bye bye to his grandiose production. It's kind of gross to write it down, but when we were there, we just found it super-hilarious. Unfortunately, even though he is now willing to pass on the potty, constipation is not history yet. There are frequent times when we still have to use our last resort (suppository) despite all the other nutritional and supplemental support we've tried. Namely fish oil, flax seed, pro-biotics, aloe vera juice, prune juice, prune/apricot pureé, Lax-a-day,etc.....) We even followed a GFCF diet so the last possible culprit was eliminated.
We will be seeing our naturopath for the second time next month. I hope she will have a more effective protocol for us.
We were lucky if we could get an hour of ball-rolling done on his abdomen while he is sleeping. But the back? Don't even think about it. I really don't know why Jason was so cooperative when he's in the Montreal training room. Pure pressure?
ABR aside, Jason has been quite responsive lately. He would be reading the Little Reader binder with me (http://www.brillkids.com/teach-reading/index.php) following words I said, laughing and giggling as I made funny sounds. He is getting humorous too...cracking into his characteristic laughs that are contagious. Ever since his potty debut this February, he finds having a BM in the potty funny. He would laugh when he hears his own poop drop, laugh when he hears his own fart, laugh when he says bye bye to his grandiose production. It's kind of gross to write it down, but when we were there, we just found it super-hilarious. Unfortunately, even though he is now willing to pass on the potty, constipation is not history yet. There are frequent times when we still have to use our last resort (suppository) despite all the other nutritional and supplemental support we've tried. Namely fish oil, flax seed, pro-biotics, aloe vera juice, prune juice, prune/apricot pureé, Lax-a-day,etc.....) We even followed a GFCF diet so the last possible culprit was eliminated.
We will be seeing our naturopath for the second time next month. I hope she will have a more effective protocol for us.
Thursday, April 22, 2010
Rock-and-rolling with ABR
Came back from the long-anticipated assessment with Leonid, the brain behind ABR. I went there with lots of questions and worries in mind, that Jason's mobility functions seem to getting more limited as an unavoidable side-effect of the ABR process. But I'm so glad to come back with questions answered, and a reassurance that Jason is still on the right track.
Leonid talked about the tent effect, how his back and his legs were moving (or bouncing) in one. Crawling motion in the past were done by what seems like a sling across the shoulder blades and the pelvis, i.e. wrong place wrong movement, so it won't last. Now, as his back and hips are getting released, the legs are left on their own and thus releasing the weakness...sort of. (if I can totally understand and rephrase what he said). He said there are lots of room for release in his back (hour-glass effect). Articulation of his vertebral column will help reducing the tent effect and act as the bridge between the top and the bottom within the shoulder girdle/pelvis/circumferential mass. He also said to expect further elongation of his neck, i.e. his neck will extend further before coming back up.
I don't expect anyone who read this to understand everything I wrote. I am not even sure that I understand this 100% myself. But Leonid was joking that I was one, among others, who asked lots of questions...but how could I not? I really wonder if the other parents understand everything Leonid said? Now that his Russian accent has improved so much, it's clearly not a language issue...but that of technical know-hows.
I really wish I had his brain and his X-ray vision, so I will not be panicky so much during the ABR process. But I'm just a mother...a very eager mother to help my son achieve his potential...whatever that was meant to be.
Anyway, I know Leonid feels good after seeing Jason. If he feels good, I feel good.
Ball Rolling....
We learned the new super soft ball rolling technique. Descent->Roll forward->Rock back...so goes the rhythm. It seems to be an easy, fun way to do 'therapy' on Jason. Jason surprised us by being so cooperative all along the 2-day training. He let us practise on him while lying down on the bench...half asleep...and when he is not, he will look at us with a smiley face or try to grab the ball from us making it a game. When we first started ABR 4 years ago, I never imagined Jason would really lie down and let us work on him...but he did....albeit not without some 'management' on our part. We thank God for Jason and ABR. I just hope God will give me more time and more energy to help him.
Leonid talked about the tent effect, how his back and his legs were moving (or bouncing) in one. Crawling motion in the past were done by what seems like a sling across the shoulder blades and the pelvis, i.e. wrong place wrong movement, so it won't last. Now, as his back and hips are getting released, the legs are left on their own and thus releasing the weakness...sort of. (if I can totally understand and rephrase what he said). He said there are lots of room for release in his back (hour-glass effect). Articulation of his vertebral column will help reducing the tent effect and act as the bridge between the top and the bottom within the shoulder girdle/pelvis/circumferential mass. He also said to expect further elongation of his neck, i.e. his neck will extend further before coming back up.
I don't expect anyone who read this to understand everything I wrote. I am not even sure that I understand this 100% myself. But Leonid was joking that I was one, among others, who asked lots of questions...but how could I not? I really wonder if the other parents understand everything Leonid said? Now that his Russian accent has improved so much, it's clearly not a language issue...but that of technical know-hows.
I really wish I had his brain and his X-ray vision, so I will not be panicky so much during the ABR process. But I'm just a mother...a very eager mother to help my son achieve his potential...whatever that was meant to be.
Anyway, I know Leonid feels good after seeing Jason. If he feels good, I feel good.
Ball Rolling....
We learned the new super soft ball rolling technique. Descent->Roll forward->Rock back...so goes the rhythm. It seems to be an easy, fun way to do 'therapy' on Jason. Jason surprised us by being so cooperative all along the 2-day training. He let us practise on him while lying down on the bench...half asleep...and when he is not, he will look at us with a smiley face or try to grab the ball from us making it a game. When we first started ABR 4 years ago, I never imagined Jason would really lie down and let us work on him...but he did....albeit not without some 'management' on our part. We thank God for Jason and ABR. I just hope God will give me more time and more energy to help him.
Thursday, April 15, 2010
Getting ready for the trip...
Tomorrow, we will be heading for our Spring visit to the ABR centre in Montreal. I am so excited because I heard so many good testimonials with the new ball-rolling technique. Well, that's sooo me. I am usually very excited in every new learning opportunity, new lessons, new books, yet keeping the momentum up till the end is another story. I am hoping this time I will keep the steam going to a point where I can share MY version of success stories.
I found ABR in 2005. It took me another year for me to decide we'll take the ABR path. As a single-income household, you really have to watch every penny and the choice of therapy sometimes does not depend solely on its validity...but on efficiency by cost, by time, and by logistics. After considering all other alternatives, (MEDEK in Toronto, Anat Baniel in San Rafael, Suit Therapy in Michigan, Family Hope Center in Philadelphia, etc...) we decide we'll give ABR a try.
In the first few months of ABRÃng, I did it with new energy new commitment and the results were amazing (coupled with the fact that the body responds to all new therapy with an "awakening" response, hence the initial response almost always were better than later down the road). His abdomen which used to be folded and weak changed to a full strong ab. The shoulder blades which used to bulge out when raising his arms were back in place. I was hopeful this would eventually translate to better motor ability, stronger trunk and better balance (his major obstacle), then bingo, he'd be walking in no time. However, this isn't the way miracle happens. It is a long process....sometimes painful. Not that the therapy itself caused any pain at all (not like MEDEK, when my thumb went semi-paralyzed after the almost impossible acrobatic manipulation at Jason's ankles; nor the endless creeping and crawling of the physical program at FHC), but it's the pain for a 'seemingly' lack of progress for a prolonged period of time, and the pain to see the 'seeming' loss of some of the functional skills he had. e.g. his ability to bear weight went from minutes to just seconds, his arm-leg coordination in crawling was all confused, to a point he couldn't crawl safely without a harness wrapped around his trunk. Even though I know that this process of fascial release took many layers of unwinding to complete, it's difficult for me (or any lay-mother) to tell if this really is just part of the 'process', or if this is a true regression because of age. I even wrote Leonid an email saying ABR is like a river of no return...that it's like we have to keep going and going but we can never stop because I'm afraid I would be leaving him in a ragdoll state of (non-)functions. But he replied saying that it's actually CP (cerebral palsy) that is the river of no return. (yea, cerebellar hypoplasia could be placed under the broad umbrella of CP) It was until then that I realized what we've done through ABR was actually helping to reduce the damage CP would have done to our kids. When I saw his calf muscles growing, I couldn't help but think "doesn't this defy the rules? cuz non-walking CP kids usually don't have calf muscles?".
And when I heard all the exciting testimonials about the new ball-rolling technique that I'm going to learn in this trip, I am all the more hopeful than ever. I know this is the breakthrough we all need at ABR. We need not just something that works, but works efficiently. With this newly injected dose of confidence, I hope Jason will benefit from this new technique real soon.
I found ABR in 2005. It took me another year for me to decide we'll take the ABR path. As a single-income household, you really have to watch every penny and the choice of therapy sometimes does not depend solely on its validity...but on efficiency by cost, by time, and by logistics. After considering all other alternatives, (MEDEK in Toronto, Anat Baniel in San Rafael, Suit Therapy in Michigan, Family Hope Center in Philadelphia, etc...) we decide we'll give ABR a try.
In the first few months of ABRÃng, I did it with new energy new commitment and the results were amazing (coupled with the fact that the body responds to all new therapy with an "awakening" response, hence the initial response almost always were better than later down the road). His abdomen which used to be folded and weak changed to a full strong ab. The shoulder blades which used to bulge out when raising his arms were back in place. I was hopeful this would eventually translate to better motor ability, stronger trunk and better balance (his major obstacle), then bingo, he'd be walking in no time. However, this isn't the way miracle happens. It is a long process....sometimes painful. Not that the therapy itself caused any pain at all (not like MEDEK, when my thumb went semi-paralyzed after the almost impossible acrobatic manipulation at Jason's ankles; nor the endless creeping and crawling of the physical program at FHC), but it's the pain for a 'seemingly' lack of progress for a prolonged period of time, and the pain to see the 'seeming' loss of some of the functional skills he had. e.g. his ability to bear weight went from minutes to just seconds, his arm-leg coordination in crawling was all confused, to a point he couldn't crawl safely without a harness wrapped around his trunk. Even though I know that this process of fascial release took many layers of unwinding to complete, it's difficult for me (or any lay-mother) to tell if this really is just part of the 'process', or if this is a true regression because of age. I even wrote Leonid an email saying ABR is like a river of no return...that it's like we have to keep going and going but we can never stop because I'm afraid I would be leaving him in a ragdoll state of (non-)functions. But he replied saying that it's actually CP (cerebral palsy) that is the river of no return. (yea, cerebellar hypoplasia could be placed under the broad umbrella of CP) It was until then that I realized what we've done through ABR was actually helping to reduce the damage CP would have done to our kids. When I saw his calf muscles growing, I couldn't help but think "doesn't this defy the rules? cuz non-walking CP kids usually don't have calf muscles?".
And when I heard all the exciting testimonials about the new ball-rolling technique that I'm going to learn in this trip, I am all the more hopeful than ever. I know this is the breakthrough we all need at ABR. We need not just something that works, but works efficiently. With this newly injected dose of confidence, I hope Jason will benefit from this new technique real soon.
Friday, April 9, 2010
OK now...how should I start here? I guess I should start by explaining why I chose this name for my blog - Miracles-in-Progress...hmmm
One day, when I was exhausted, despaired, and frustrated with the lack of progress in my son, I bumped into this bible verse:
"These things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass." Habakkuk 2:3
I could not believe my eyes as it's like God speaking to me live. I felt instant peace in my heart and I decided to make a deliberate choice to believe that we are awaiting a miracle to come about. Note that I said "make a ...choice to believe". I don't care if I truly believe it will happen,or not, but I've chosen to believe. This keeps me going, keeps me positive, keeps me strong, and ready for more challenges ahead. It just takes time. Lots of time. I believe, like any other miraculous recovery, that Jason is a work-in-progress that God has chosen us to help Him work towards completion. We don't know when, but if we believe and do not falter, it will happen. It may not be how we human beings perceive a miracle to be (e.g. suddenly rise from his chair and walk), but whatever my son was meant to be in His plan. Hence the name of this blog.
One day, when I was exhausted, despaired, and frustrated with the lack of progress in my son, I bumped into this bible verse:
"These things I plan won't happen right away. Slowly, steadily, surely, the time approaches when the vision will be fulfilled. If it seems slow, do not despair, for these things will surely come to pass." Habakkuk 2:3
I could not believe my eyes as it's like God speaking to me live. I felt instant peace in my heart and I decided to make a deliberate choice to believe that we are awaiting a miracle to come about. Note that I said "make a ...choice to believe". I don't care if I truly believe it will happen,or not, but I've chosen to believe. This keeps me going, keeps me positive, keeps me strong, and ready for more challenges ahead. It just takes time. Lots of time. I believe, like any other miraculous recovery, that Jason is a work-in-progress that God has chosen us to help Him work towards completion. We don't know when, but if we believe and do not falter, it will happen. It may not be how we human beings perceive a miracle to be (e.g. suddenly rise from his chair and walk), but whatever my son was meant to be in His plan. Hence the name of this blog.
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