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.

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.

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.

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.

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.

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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.

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.