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.

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.

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?

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)

 Marcy also mentioned to me Dr. Nuzzo who performs a unique procedure called PERCS or SPML (Selective Percutaneous Myofascial Lengthening).  It is a relatively non-invasive surgery where the myofascial layers of the legs or heels are lengthened.  Wai was so excited when he heard about this surgery, due to its potential to help straighten Jason's legs, making him more possible to stand and bear weight. However, after checking with Leonid, he was quite sure that this will not help Jason, if not make it worse in the long run.  This will be at the top of prayer items from this day on and I rely on God's guidance on whether or not to go for it.  The good thing is that the cost of this surgery is most likely covered by OHIP, if not, by Wai's employer's group benefit plan.  So cost should not be a factor in making our decision.

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.