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."

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.

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.

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.

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.