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.

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.

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.

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."