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
Sunday, May 23, 2010
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.
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