Over the last few months, there have been a few readers asking about the Neurosuit. So I thought I'd share some general info about it. I hope it'll be useful.
The suit is yours to keep upon purchase. The suit comes in various sizes. My son is wearing the smallest size now. We bought it when he was 3 and a half years old. The oldest person whom I know who bought the suit is 20+ years old.
The suit consists of various separate pieces - vest for the upper body; a pair of shorts; two arm bands; two leg bands; a cap (I think for those with poor head control). You can't buy the pieces separately. It comes in a set. There are also lots of bungee cords and small hooks to attach the cords to be suit.
The suit is designed such that it is "expandable" to grow with the child for a few years. A sneaker or sports shoe, has lace on the front to accomodate slightly different sized feet. So too, the suit has lace parts on various parts to accomodate for a growing child. There's lace on the front chest and back of the chest, on the left and right side of the shorts. There are also velcro straps, to accomodate a growing child. Those straps are on the vest, arm and leg bands.
You will have to pay for an assessment and training from the therapist. The therapist will ask you the child's history, and see what is his/her area of need. The therapist will decide on how to hook up the bungee cords according to the child's needs. The therapist will train the caregiver on how to prepare the child's body before putting on the suit. That simply means doing a series of reflex patterning movements or massages. The therapist will work with the child, the way a physiotherapist would, except that the child is wearing the suit. It's good to book a few sessions because there is much to learn and much to ask. The therapist will also come up with a home programme for the caregiver to do with the child. Home programme means homework, exercises you do with the child in the suit when at home/at the park etc.
You could also bring the child in the suit to the therapist for a series of intensive sessions. My son just completed a series of 5 consecutive days of 2 hourly sessions, earlier in Dec.
It's also important to check back with the therapist on a regular basis (3mths/6mths depending), because as the child grows and improves, the hook ups may need to be changed.
I believe the suit works because the cords help to align the body correctly, which then helps the child to use the right muscles. The cords also provide resistance to build up muscle strength - think resistance training for an athelete. Importantly too, the suit itself provides proprioceptive input to the brain which I think is lacking in conventional physiotherapies.
To see results, it's best to use the neurosuit as frequently as possible. As with CP kids in general, it's important to achieve the right frequency, intensity and duration, to bring about progress. In the earlier days after purchasing the suit, my son exercised in the suit almost everyday, twice a day, usually at the park. We chose the park because there's equipment there that I don't have at home.
For more details about the suit, you may contact the therapist directly. His name is Adnan and is contactable via email on: adnanasgerali@yahoo.com.
Thursday, December 30, 2010
Tuesday, December 28, 2010
Hyperbaric Oxygen - resumption of sessions
We resumed his Hyperbaric Oxygen Therapy sessions about a week and a half ago. He still has quite a few sessions to go and it's likely to run into the first few weeks of Jan.
I had originally intended to complete it by early Dec, but was delayed because of his on and off cold. Then I had planned for him to have two sessions in a day, in order to complete it before school reopens. However, I decided to make it just once a day because it was tiring for both of us. That allowed him time for other morning activities like playdates, Gymboree sessions or just messing about at home.
One thing I learnt which I wish to share is that if the latex neck seal is slightly big for your child, place a handkerchief between the seal and the child's neck. That will prevent too much oxygen from leaking out. Thanks for the tip Fe! It saved my arms from being sore as I used to fold and hold the excess latex to make a tighter seal, for an entire hour.
I pray that the remaining sessions bring about further positive changes, especially in clarity of speech, quickening of his reflexes, reduction in spasticity, and improvements in maturity.
I had originally intended to complete it by early Dec, but was delayed because of his on and off cold. Then I had planned for him to have two sessions in a day, in order to complete it before school reopens. However, I decided to make it just once a day because it was tiring for both of us. That allowed him time for other morning activities like playdates, Gymboree sessions or just messing about at home.
One thing I learnt which I wish to share is that if the latex neck seal is slightly big for your child, place a handkerchief between the seal and the child's neck. That will prevent too much oxygen from leaking out. Thanks for the tip Fe! It saved my arms from being sore as I used to fold and hold the excess latex to make a tighter seal, for an entire hour.
I pray that the remaining sessions bring about further positive changes, especially in clarity of speech, quickening of his reflexes, reduction in spasticity, and improvements in maturity.
Monday, December 27, 2010
I've not been sleeping well
It's 3am. I've been unable to sleep for at least the last hour. This is becoming an unwelcomed regular occurence. I decided to try my luck with the internet connection (I'm in luck!), so here I am, blogging.
I am tired, mentally and physically, but felt the need to blog. It's been my emotional outlet for destressing, and my way to try to work out what's going on in me. There must be issues bugging me that cause me to wake from sleep at ungodly hours lately.
As the school holidays come to an end, I worry about the new academic year. Will his new teacher be supportive? Will his new classmates be nice to him? Will his teacher be effective in teaching so that my "home teaching" workload is lighter? Have I done enough for him this school holidays?
Lately I have been stressed on the homefront in managing my helper and my learning disabled adult sister. I confess that on many occasions since this helper came to us, I had been so angry with them individually, and together. I do not blame my sister for her actions - she is the way she is because of her limitations and the current circumstances. I do not have the ability to, on a consistent regular basis, give her the attention she craves for or see to beyond her basic needs.
I'm beginning to see that there will always be issues between my sister and who ever becomes my live-in helper. I've not yet come to the stage of being able to do without a live-in helper, and I've yet to learn to manage the dynamics well.
I'm aware that I ought to have been able to deal with the issues in a calm manner. I do worry that my displays of anger is a bad influence on my son. Parents should be good role models. I've stopped shouting and am allowing more slack. I think though that it's ended up being bottled up inside me, which is very unhealthy and dangerous.
I need some "me" time, away from home, away from my son, so that I can breathe. I dont need a holiday from it all and that's just not possible anyway. I need "me" time on a consistent regular basis. It doesn't have to involve a lot of money or a lot of time - I think just having a cup of tea at the mamak is enough. I've hardly had time alone since this helper arrived in March.
There! I've had my say. I feel much better now. There are other issues simmering under the surface, which I cannot write about, and many other frustrations which I will have to deal with. To those reading this post, and who previously thought I'm coping well with everything that's going on, I'm not. Everyone needs help and support, even more so as parents of special needs kids.
Hopefully, my internet connection improves considerably (during normal waking hours!), as blogging seems to have a positive effect on me - both in terms of writing my blog and reading the blogs of others. It's now 4.30am and I'm off to a hopefully peaceful sleep.
I am tired, mentally and physically, but felt the need to blog. It's been my emotional outlet for destressing, and my way to try to work out what's going on in me. There must be issues bugging me that cause me to wake from sleep at ungodly hours lately.
As the school holidays come to an end, I worry about the new academic year. Will his new teacher be supportive? Will his new classmates be nice to him? Will his teacher be effective in teaching so that my "home teaching" workload is lighter? Have I done enough for him this school holidays?
Lately I have been stressed on the homefront in managing my helper and my learning disabled adult sister. I confess that on many occasions since this helper came to us, I had been so angry with them individually, and together. I do not blame my sister for her actions - she is the way she is because of her limitations and the current circumstances. I do not have the ability to, on a consistent regular basis, give her the attention she craves for or see to beyond her basic needs.
I'm beginning to see that there will always be issues between my sister and who ever becomes my live-in helper. I've not yet come to the stage of being able to do without a live-in helper, and I've yet to learn to manage the dynamics well.
I'm aware that I ought to have been able to deal with the issues in a calm manner. I do worry that my displays of anger is a bad influence on my son. Parents should be good role models. I've stopped shouting and am allowing more slack. I think though that it's ended up being bottled up inside me, which is very unhealthy and dangerous.
I need some "me" time, away from home, away from my son, so that I can breathe. I dont need a holiday from it all and that's just not possible anyway. I need "me" time on a consistent regular basis. It doesn't have to involve a lot of money or a lot of time - I think just having a cup of tea at the mamak is enough. I've hardly had time alone since this helper arrived in March.
There! I've had my say. I feel much better now. There are other issues simmering under the surface, which I cannot write about, and many other frustrations which I will have to deal with. To those reading this post, and who previously thought I'm coping well with everything that's going on, I'm not. Everyone needs help and support, even more so as parents of special needs kids.
Hopefully, my internet connection improves considerably (during normal waking hours!), as blogging seems to have a positive effect on me - both in terms of writing my blog and reading the blogs of others. It's now 4.30am and I'm off to a hopefully peaceful sleep.
Sunday, December 26, 2010
Bad internet connection
There are a lot of activities I wish to write about but have been pampered by the really bad internet connection from home, over the past few weeks. Incredibly frustrating!
Most times, I cant even get into the internet. On the very few occasions that I did, the speed was less than100kbps for a split second, then drops to zero. I've only been able to check (from home) my email and my blog for comments on extremely rare occasions - e.g at 5am when I can't sleep.
I had been able to get fast speeds when I access from places outside my home (e.g at the mall while he's at Gymboree, or at the therapist's house, or while waiting at the car workshop), so I managed to search and download more worksheets, and information that I hope will help in developing his maths and other skills.
I had lodged a complain to Maxis, but will take 3 -7 working days for the technical team to investigate. You know what customer service is like in M'sia...so I'm considering switching providers.
Do tell me which mobile internet service provider do you use? Does it provide fast and stable speeds?
Most times, I cant even get into the internet. On the very few occasions that I did, the speed was less than100kbps for a split second, then drops to zero. I've only been able to check (from home) my email and my blog for comments on extremely rare occasions - e.g at 5am when I can't sleep.
I had been able to get fast speeds when I access from places outside my home (e.g at the mall while he's at Gymboree, or at the therapist's house, or while waiting at the car workshop), so I managed to search and download more worksheets, and information that I hope will help in developing his maths and other skills.
I had lodged a complain to Maxis, but will take 3 -7 working days for the technical team to investigate. You know what customer service is like in M'sia...so I'm considering switching providers.
Do tell me which mobile internet service provider do you use? Does it provide fast and stable speeds?
Friday, December 24, 2010
Science activity - sink or float
This was a quick and simple science activity during the holidays. I first saw it on my friend's blog (thanks for the idea Yvonne) many months ago, but never had the time to get round to do it.
I just used objects I found around the house, with a mix of large and small items, those that'll float and those that'll sink.
He loved throwing the stuff in cos it'd make a splash or "kerplunk" sound!
But before throwing it in, I'd ask him to predict whether it'd sink or float, and I'd make a guess too.
I was trying to introduce to him that in science experiments, you'd make a prediction, then test it out, and compare the results.
Most times, he predicted wrongly, which is fine cos it wasn't about getting it right (not at his age anyway), but about taking part in an experiment and what is an experiment all about. Btw, I some of my predictions were wrong too! LOL
I also prepared a chart for him to record the findings. Recording one's findings is also part of an experiment.
But I also realised it was useful to teach him how to use or read a chart. By this I mean reading a row and column in order to find the right place to place the tick mark.
And, no I'm not kiasu on this aspect cos his kindergarten workbook had two pages that needed him to understand how to use a chart. He needs more practice on this as you can see he initially chose the wrong column or row to record the outcomes. But as usual, I've a lot of things for him to learn and right now, this low on my priority list.
I also did this activity to break from the usual activities which are more therapy based and from the lots of craft work we did lately.
But I also realised it was useful to teach him how to use or read a chart. By this I mean reading a row and column in order to find the right place to place the tick mark.
And, no I'm not kiasu on this aspect cos his kindergarten workbook had two pages that needed him to understand how to use a chart. He needs more practice on this as you can see he initially chose the wrong column or row to record the outcomes. But as usual, I've a lot of things for him to learn and right now, this low on my priority list.
I also did this activity to break from the usual activities which are more therapy based and from the lots of craft work we did lately.
Monday, December 20, 2010
Craft activity - corn
I found it on one of the many kids education/activity related websites. I have recently been surfing on many of those websites that I've forgotten where I saw this.
I cut the pieces of paper and he helped to glue them on. He placed glue on the "corn", scooped various types of beans and grains from containers, and scattered them on the corn. Even though each step was assisted, he still did some bits of it himself.
I found it's good for fine motor, sensory, and hand-eye coordination. I did a lot of craft work with him during the school holidays as it's a fun way to get in fine motor practice. He gets to open and close the glue cap, to squeeze the glue bottle, open and close tupperwares containing the craft materials, use both hands together, figure things out himself, etc etc.
There's of course the creative element to it - I've not emphasised creative skills in the past.
He also gets a sense of achievement which I hope will boost his confidence. He was very pleased with this piece of work and showed it off to papa when he came home.
Sunday, December 19, 2010
He attended class without a shadow aide
I’m very late in writing about this but it is an important event that I wish to share.
Back in Oct I had mentioned in my blog that I had floated the idea, to his teacher, of my son attending kindergarten without a shadow aide. Teacher agreed, but for it to happen only after the concert.
So after the concert, I raised it to the teacher again. After a week of nervous waiting, I got the approval from the principal.
On 1st Nov, a week after the concert, my son went to kindergarten without me, without any shadow aide. It was a big milestone – for him and for me!
I was worried for several days prior and didn’t have proper sleep in the run up to the first day. I was worried that something might happen that would lead to him being kicked out or to him disliking school. I was worried how he’d cope with the stress.
His 1st day
My heart sank when we arrived in class on the first day. His teacher was absent and it was the fierce teacher’s aide substituting for the day instead. It wasn’t the best start but if he “survived” the day, I knew that he’d probably be ok the rest of the days.
I was too nervous to be stuck at home while he was in class, so thankfully a friend was free to accompany me to a toy wholesaler in the city. I not only managed to buy the main gift for the party packs for my son’s birthday party in school, but also found a fun (& useful) toy for his birthday.
I spoke to the substitute when I got there early before dismissal. He fed himself his snack and drank his water. He needed help to open his water tumbler and Tupperware. The substitute took him to toilet but he didn’t shee-shee (scared I guess!). He didn’t cry or cause any trouble for the substitute.
The remaining days
There were not many school days from 1 Nov to 19 Nov. Out of those 15 days, there were 2 public holidays, 1 day the school was closed, 1 field trip day, 1 year end party day.
Nonetheless, he successfully attended those school days without me, without any incident. Initially, he was very happy to attend class without me. Teacher said he was happy, smiling, laughing and playing with his friends.
On one day, he was laughing so loudly that the teacher in the class next to his commented that his true self could be seen when I’m not around. I think that was because he and another special kid had completed their work before the rest (with teacher’s assistance) and allowed to play. They started chasing each other and so my son was happy and excited.
There wasn’t much teaching in those last few weeks of school, so I’m not sure how he would have coped during a more “typical school day”. For the teaching that did take place, he was able to follow lessons during workbook time. When it was floor time, he continued to be a bit fidgety and easily distracted, curious what his friends who weren’t paying attention were up to.
After a few days of attending class without me, he started to show some little signs of stress. He would say that he missed me whereas in the initial days, he didn’t. He would hug me very tightly or hold my hand extra tight when I picked him up from school.
Helpful friends
The kids were curious why I didn’t attend class with my son anymore. Teacher explained that my son’s big enough now and almost 5, so doesn’t need mummy anymore : )
I’m thankful that the kids were kind to him. They would help him with this or that. They included him in their play (teacher did tell them to). It looks like his social skill is slowly improving because on one occasion, he played Lego with his best friend and not just alongside or merely observe.
Assistance still needed
He still needs help from his friends or teachers in various small ways. He sometimes needs help to open his water tumbler (esp when my sister closes it super tight to avoid it spilling). He needs help opening and closing his snack box (I’ve since found a container he CAN open by himself – a Lock & Lock brand). Teacher needs to keep a close eye on him when he’s eating as he has a tendency to put more food in his mouth before completely swallowing the previous bite, and thus gag/vomit.
He needed assistance from the teacher when it came to writing practice (several lines). He was distracted during lessons, by the out-of-the-box girl who sat beside him so I guess that’s why teacher had him sit at her table with the other kids who needed more attention during workbook time.
Teacher was very supportive of him in terms of his toileting needs too. She initially walked with him to toilet but peeped from behind the wall. The next time, she had his friends go with him but would check on him a few seconds later. A few times more and teacher didn’t need to check on him in the toilet. But she had to be aware of how long he was in the toilet and if he didn’t return, she’d go and check on him. On occasion his underwear or pants would get twisted and when he returns to class, teacher would notice him tugging and help him adjust.
Next year, 2011
I believe this “without a shadow aide” trial happened mainly because the class teacher was supportive, understood my son’s need, felt confident enough to handle him, and they had completed the syllabus for the year, and it was only for a few weeks.
Teacher mentioned that next year, it’s most likely that I’ll have to be with him for the first few months at least, to help him settle down because he’ll have new classmates, new teacher, new classroom set up etc.
But the fact remains that he did successfully manage to attend class without me, albeit with assistance from teacher and friends. This definitely bodes well for the future.
Extra hours for me
Those few weeks gave me a few precious extra 3 hours in a day. Even though I didn’t get to relax, I did manage to do many errands.
Day 1: bought the main item for the party packs for his school birthday party & his birthday gift.
Day 2: bought remaining items to fill up the party bags.
Day 3: fell sick & slept the morning away!
Day 4: made a lot of phone calls – quotations for my car’s cracked windscreen, fixed 2 doctor’s appointments for myself, fixed appointment with contractor etc. Cleared some paperwork.
Day 5: shopped for Christmas presents and sister’s birthday present.
Day 6: appointment with Gynaecologist.
Day 7: appointment with Hepatologist.
Day 8: errands to the Laundromat, cake shop, flower shop for my sister’s birthday, met up with contractor.
Day 9: drove to workshop to get opinion on cracked windscreen and picked up some groceries.
Day 10: paperwork at home & general tidying up.
Day 11: accompanied son on field trip.
Day 12: picked up his birthday cake and celebrated with him in school & since it was the last day of school, they were dismissed at 11am.
As they say, no rest for the wicked!
Back in Oct I had mentioned in my blog that I had floated the idea, to his teacher, of my son attending kindergarten without a shadow aide. Teacher agreed, but for it to happen only after the concert.
So after the concert, I raised it to the teacher again. After a week of nervous waiting, I got the approval from the principal.
On 1st Nov, a week after the concert, my son went to kindergarten without me, without any shadow aide. It was a big milestone – for him and for me!
I was worried for several days prior and didn’t have proper sleep in the run up to the first day. I was worried that something might happen that would lead to him being kicked out or to him disliking school. I was worried how he’d cope with the stress.
His 1st day
My heart sank when we arrived in class on the first day. His teacher was absent and it was the fierce teacher’s aide substituting for the day instead. It wasn’t the best start but if he “survived” the day, I knew that he’d probably be ok the rest of the days.
I was too nervous to be stuck at home while he was in class, so thankfully a friend was free to accompany me to a toy wholesaler in the city. I not only managed to buy the main gift for the party packs for my son’s birthday party in school, but also found a fun (& useful) toy for his birthday.
I spoke to the substitute when I got there early before dismissal. He fed himself his snack and drank his water. He needed help to open his water tumbler and Tupperware. The substitute took him to toilet but he didn’t shee-shee (scared I guess!). He didn’t cry or cause any trouble for the substitute.
The remaining days
There were not many school days from 1 Nov to 19 Nov. Out of those 15 days, there were 2 public holidays, 1 day the school was closed, 1 field trip day, 1 year end party day.
Nonetheless, he successfully attended those school days without me, without any incident. Initially, he was very happy to attend class without me. Teacher said he was happy, smiling, laughing and playing with his friends.
On one day, he was laughing so loudly that the teacher in the class next to his commented that his true self could be seen when I’m not around. I think that was because he and another special kid had completed their work before the rest (with teacher’s assistance) and allowed to play. They started chasing each other and so my son was happy and excited.
There wasn’t much teaching in those last few weeks of school, so I’m not sure how he would have coped during a more “typical school day”. For the teaching that did take place, he was able to follow lessons during workbook time. When it was floor time, he continued to be a bit fidgety and easily distracted, curious what his friends who weren’t paying attention were up to.
After a few days of attending class without me, he started to show some little signs of stress. He would say that he missed me whereas in the initial days, he didn’t. He would hug me very tightly or hold my hand extra tight when I picked him up from school.
Helpful friends
The kids were curious why I didn’t attend class with my son anymore. Teacher explained that my son’s big enough now and almost 5, so doesn’t need mummy anymore : )
I’m thankful that the kids were kind to him. They would help him with this or that. They included him in their play (teacher did tell them to). It looks like his social skill is slowly improving because on one occasion, he played Lego with his best friend and not just alongside or merely observe.
Assistance still needed
He still needs help from his friends or teachers in various small ways. He sometimes needs help to open his water tumbler (esp when my sister closes it super tight to avoid it spilling). He needs help opening and closing his snack box (I’ve since found a container he CAN open by himself – a Lock & Lock brand). Teacher needs to keep a close eye on him when he’s eating as he has a tendency to put more food in his mouth before completely swallowing the previous bite, and thus gag/vomit.
He needed assistance from the teacher when it came to writing practice (several lines). He was distracted during lessons, by the out-of-the-box girl who sat beside him so I guess that’s why teacher had him sit at her table with the other kids who needed more attention during workbook time.
Teacher was very supportive of him in terms of his toileting needs too. She initially walked with him to toilet but peeped from behind the wall. The next time, she had his friends go with him but would check on him a few seconds later. A few times more and teacher didn’t need to check on him in the toilet. But she had to be aware of how long he was in the toilet and if he didn’t return, she’d go and check on him. On occasion his underwear or pants would get twisted and when he returns to class, teacher would notice him tugging and help him adjust.
Next year, 2011
I believe this “without a shadow aide” trial happened mainly because the class teacher was supportive, understood my son’s need, felt confident enough to handle him, and they had completed the syllabus for the year, and it was only for a few weeks.
Teacher mentioned that next year, it’s most likely that I’ll have to be with him for the first few months at least, to help him settle down because he’ll have new classmates, new teacher, new classroom set up etc.
But the fact remains that he did successfully manage to attend class without me, albeit with assistance from teacher and friends. This definitely bodes well for the future.
Extra hours for me
Those few weeks gave me a few precious extra 3 hours in a day. Even though I didn’t get to relax, I did manage to do many errands.
Day 1: bought the main item for the party packs for his school birthday party & his birthday gift.
Day 2: bought remaining items to fill up the party bags.
Day 3: fell sick & slept the morning away!
Day 4: made a lot of phone calls – quotations for my car’s cracked windscreen, fixed 2 doctor’s appointments for myself, fixed appointment with contractor etc. Cleared some paperwork.
Day 5: shopped for Christmas presents and sister’s birthday present.
Day 6: appointment with Gynaecologist.
Day 7: appointment with Hepatologist.
Day 8: errands to the Laundromat, cake shop, flower shop for my sister’s birthday, met up with contractor.
Day 9: drove to workshop to get opinion on cracked windscreen and picked up some groceries.
Day 10: paperwork at home & general tidying up.
Day 11: accompanied son on field trip.
Day 12: picked up his birthday cake and celebrated with him in school & since it was the last day of school, they were dismissed at 11am.
As they say, no rest for the wicked!
Thursday, December 9, 2010
Mild Cold
Hello! Hello! Hello! It’s been many weeks since my last posting as I’ve not had the time. It’s been busy, stressful and eventful. I’ll try to write several postings on key events that happened as I don’t think it’s possible to summarise it all into just one post.
In this post though, I will write about his mild cold that he currently has and then in my next posts, back track in time to some past events.
He started his mild cold on 18 Nov and he’s still not fully recovered from it yet. He was getting better after a week or so, then got worse, and repeated that better-worse cycle two more times over a 3 week span.
He is on the recovery stage as I write this post and hopefully he’ll recover completely this time so that both he and I can at last have proper sleep.
Although 3 weeks is a long time, I am thankful his cold has been mild and mostly managed with runny nose medicine. He only needed a few days of hospital runs for the nebuliser, and even then it was only using Duovent. In the past, the months of Nov & Dec typically see him falling ill with a bad cold leading onto bronchitis or bronchiolitis, so I hope this means that his immune system is getting stronger as he grows up.
3 weeks of putting plans on hold because of the cold is a long time for me. It’s 3 weeks of the year end school holidays lost.
I had planned for him to complete the 40 sessions of HBOT on 1 Dec. We’ve only done 18 sessions so far. Even though his cold is mild, it has made it difficult for him to equalise as we dive. Perhaps because he’s still small, the sinus and Eustachian tubes are also tiny, and thus either slightly inflamed or congested with a bit of mucus.
I really do want to complete the remaining sessions asap as I’ve seen good benefits from it. His spasticity is reduced which enables him to do more fine motor work. Oral motor has also seen some improvement where he can now purse his lips and chew chunkier spoonfuls of meat. He seems to think a bit faster and speaks his mind more frequently.
I had also planned other activities for him this school holidays, apart from HBOT. I wanted to do Neurosuit therapy to maintain/improve his stamina, and increase his muscle strength. I wanted to have many play dates with some of his classmates, at home and outdoors (at the park, science centre, PetroSains, cinema) to improve his social skills and confidence. I wanted to resume his music class so that the gap between the kids doesn’t grow even wider. We wanted to celebrate his birthday with an outing to the KL International Motor Show, as he’s crazy about cars. I wanted to bring him to see the beautiful Christmas decorations in the many shopping malls. I wanted to start him on swimming lessons in order to be water safe before he starts primary school (one lesson period a week is allocated to swimming).
Well, those were the things I planned for him. Then there were the errands which I planned but got shoved aside...reorganising his room, the kitchen cupboards, my cupboard, the store room...renovation to hack off and replace several cracked floor tiles, chopping down the durian tree, reupholstering the dining chairs (they are peeling so badly that they look like the flaking skin of a sunburnt swimmer)...planning how to help him progress in his maths and phonics...and more...
As you can see, I’m not one to waste time. So instead of carrying out my original plans, we did other home based activities. But I kept them light and easy, and limited the number of activities as he was sick. There were lots of art and craft activities, other fine motor activities, a few pages of simple worksheets a day and reading daily. I had more time (and patience) for him to practice self care skills (self feeding, wiping his backside after poo poo etc). He had a lot of time to play with his vehicles - that’s a special treat I allow as it is the school holidays, and he is sick (and cranky!). For the first few weeks, he literally had a vehicle in his hand the moment he woke, and was the last thing in his hand when the lights were switched off. That’s just how crazy he is about vehicles. : )
Tomorrow, he starts his intensive Neurosuit therapy for 5 consecutive days. It should be ok for the first few days but I’m not sure if he can last 2 hours a day for 5 days! But I’m sure the therapist will adjust accordingly.
In this post though, I will write about his mild cold that he currently has and then in my next posts, back track in time to some past events.
He started his mild cold on 18 Nov and he’s still not fully recovered from it yet. He was getting better after a week or so, then got worse, and repeated that better-worse cycle two more times over a 3 week span.
He is on the recovery stage as I write this post and hopefully he’ll recover completely this time so that both he and I can at last have proper sleep.
Although 3 weeks is a long time, I am thankful his cold has been mild and mostly managed with runny nose medicine. He only needed a few days of hospital runs for the nebuliser, and even then it was only using Duovent. In the past, the months of Nov & Dec typically see him falling ill with a bad cold leading onto bronchitis or bronchiolitis, so I hope this means that his immune system is getting stronger as he grows up.
3 weeks of putting plans on hold because of the cold is a long time for me. It’s 3 weeks of the year end school holidays lost.
I had planned for him to complete the 40 sessions of HBOT on 1 Dec. We’ve only done 18 sessions so far. Even though his cold is mild, it has made it difficult for him to equalise as we dive. Perhaps because he’s still small, the sinus and Eustachian tubes are also tiny, and thus either slightly inflamed or congested with a bit of mucus.
I really do want to complete the remaining sessions asap as I’ve seen good benefits from it. His spasticity is reduced which enables him to do more fine motor work. Oral motor has also seen some improvement where he can now purse his lips and chew chunkier spoonfuls of meat. He seems to think a bit faster and speaks his mind more frequently.
I had also planned other activities for him this school holidays, apart from HBOT. I wanted to do Neurosuit therapy to maintain/improve his stamina, and increase his muscle strength. I wanted to have many play dates with some of his classmates, at home and outdoors (at the park, science centre, PetroSains, cinema) to improve his social skills and confidence. I wanted to resume his music class so that the gap between the kids doesn’t grow even wider. We wanted to celebrate his birthday with an outing to the KL International Motor Show, as he’s crazy about cars. I wanted to bring him to see the beautiful Christmas decorations in the many shopping malls. I wanted to start him on swimming lessons in order to be water safe before he starts primary school (one lesson period a week is allocated to swimming).
Well, those were the things I planned for him. Then there were the errands which I planned but got shoved aside...reorganising his room, the kitchen cupboards, my cupboard, the store room...renovation to hack off and replace several cracked floor tiles, chopping down the durian tree, reupholstering the dining chairs (they are peeling so badly that they look like the flaking skin of a sunburnt swimmer)...planning how to help him progress in his maths and phonics...and more...
As you can see, I’m not one to waste time. So instead of carrying out my original plans, we did other home based activities. But I kept them light and easy, and limited the number of activities as he was sick. There were lots of art and craft activities, other fine motor activities, a few pages of simple worksheets a day and reading daily. I had more time (and patience) for him to practice self care skills (self feeding, wiping his backside after poo poo etc). He had a lot of time to play with his vehicles - that’s a special treat I allow as it is the school holidays, and he is sick (and cranky!). For the first few weeks, he literally had a vehicle in his hand the moment he woke, and was the last thing in his hand when the lights were switched off. That’s just how crazy he is about vehicles. : )
Tomorrow, he starts his intensive Neurosuit therapy for 5 consecutive days. It should be ok for the first few days but I’m not sure if he can last 2 hours a day for 5 days! But I’m sure the therapist will adjust accordingly.
Friday, November 12, 2010
Hyperbaric Oxygen: Sessions 7 – 11
He’s a quarter way through the series of 40. We’re getting used to being in the chamber, but can’t wait to complete all the sessions. It’s still a bit tricky getting the neck seal to completely seal around his neck as he does move around quite a bit in the chamber.
Last Thursday was a school holiday so he did two dives, one in the morning and another in the afternoon, with at least a 4 hour gap. I’m really trying to complete it as fast as possible, but am acutely aware that it tires him out (not to mention the boredom).
Last Saturday morning, he vomited his milk at home, and he started to cough the night before. So, to be extra cautious, I cancelled Saturday morning’s dive in case he had phlegm which may interfere with equalising. I gave him Promethazine twice on Saturday and thankfully, his cold didn’t progress any further.
To relieve his (and mine!) boredom and to de-stress from all the hyperbaric oxygen therapy, we went to Desa Park City’s park on Sunday morning. It was a good decision. We were blessed with cool weather while we fed the fishes and he rode his bike. Of course, there’s a bit of therapy that I snuck into those simple activities, but it really was mainly for relaxation.
Last Thursday was a school holiday so he did two dives, one in the morning and another in the afternoon, with at least a 4 hour gap. I’m really trying to complete it as fast as possible, but am acutely aware that it tires him out (not to mention the boredom).
Last Saturday morning, he vomited his milk at home, and he started to cough the night before. So, to be extra cautious, I cancelled Saturday morning’s dive in case he had phlegm which may interfere with equalising. I gave him Promethazine twice on Saturday and thankfully, his cold didn’t progress any further.
To relieve his (and mine!) boredom and to de-stress from all the hyperbaric oxygen therapy, we went to Desa Park City’s park on Sunday morning. It was a good decision. We were blessed with cool weather while we fed the fishes and he rode his bike. Of course, there’s a bit of therapy that I snuck into those simple activities, but it really was mainly for relaxation.
Friday, November 5, 2010
Hyperbaric Oxygen: Progress!
I had started to worry several weeks prior to starting the hyperbaric oxygen treatment (HBOT), about the many many many safety aspects; about how my son would react to being stuck in a chamber with a hood on for an hour; how I’d take to the compression and decompression; whether I’d see any benefits; when will we see the benefits; how best to utilise the hour while in the chamber; what are the changes to my daily routine that I’d have to make to slot in the treatment etc.
People told me to not have high expectations with HBOT (as it’s not a prescribed treatment for CP). People can’t tell me for sure what improvements, if any, my son will have (as each person is so different from another).
After a week of HBOT, with adjustments on my part and on my son’s part, I’m generally happy despite the side effects (tiredness). Happy because there have been improvements!
The 2 areas I’ve seen improvements are in his speech (I think the aspects of cognition and oral motor) and fine motor skills.
Speech
He’s saying more syllables in a single breath:
“Oh my gosh! He gave him so many books!”
"Yeah, just like my rabbit but a bit different."
He’s also saying more (using several breaths to say something much longer):
"It's just red lights, not ghost. It's for warning the big aeroplanes...you are flying too low...and for small helicopters...and small aeroplanes...and big helicopters." (He was referring to the red warning lights on top of tall buildings)
“Twinkle, twinkle, little star, how I wonder what you are. Up above....” (He sang the entire nursery rhyme on his own initiative, and without needing any help)
He’s saying things he doesn’t typically say:
“Thanks for reminding me.”
“Let’s go to find out.”
“What do you think?”
“What are you saying? I don’t understand you.”
Fine motor
He’s now able to put on his sandals (fake crocs) needing me to only hold the sandal steady. He’s able to move his foot this way and that way, to fit into the sandal, quite smoothly, which I’m so surprised to see!
Thank you, thank you God for blessing us! Please continue to pray for protection and progress!
People told me to not have high expectations with HBOT (as it’s not a prescribed treatment for CP). People can’t tell me for sure what improvements, if any, my son will have (as each person is so different from another).
After a week of HBOT, with adjustments on my part and on my son’s part, I’m generally happy despite the side effects (tiredness). Happy because there have been improvements!
The 2 areas I’ve seen improvements are in his speech (I think the aspects of cognition and oral motor) and fine motor skills.
Speech
He’s saying more syllables in a single breath:
“Oh my gosh! He gave him so many books!”
"Yeah, just like my rabbit but a bit different."
He’s also saying more (using several breaths to say something much longer):
"It's just red lights, not ghost. It's for warning the big aeroplanes...you are flying too low...and for small helicopters...and small aeroplanes...and big helicopters." (He was referring to the red warning lights on top of tall buildings)
“Twinkle, twinkle, little star, how I wonder what you are. Up above....” (He sang the entire nursery rhyme on his own initiative, and without needing any help)
He’s saying things he doesn’t typically say:
“Thanks for reminding me.”
“Let’s go to find out.”
“What do you think?”
“What are you saying? I don’t understand you.”
Fine motor
He’s now able to put on his sandals (fake crocs) needing me to only hold the sandal steady. He’s able to move his foot this way and that way, to fit into the sandal, quite smoothly, which I’m so surprised to see!
Thank you, thank you God for blessing us! Please continue to pray for protection and progress!
Thursday, November 4, 2010
Hyperbaric Oxygen: Session 3 – 6
Session 3: Wed, 27th Oct 2010
We tried him on the mask but things didn’t work out as expected, and when he wanted to urinate, we decided to cut short the session to just half hour. He fell asleep just as we got home so I put him to sleep still in his scrubs. He must have been so tired cos he slept for 3 hours straight.
Session 4: Thurs, 28th Oct 2010
Reverted back to using the hood, but also brought in the mask (as thoughtfully suggested by the staff) to be used if he fell asleep in the chamber.
Half way through the session, he needed to urinate! So we “went back up” to allow him to use the toilet, then “went back down”. As it was decompressing, he started to fret and cried (he seldom cries nowadays), so we stopped the session half way. He probably felt discomfort having gone down and up and down again.
Again, he fell asleep on the way home, and this time, he slept for 4 hours straight! During the first two hours of his nap, he didn’t move an inch! That told me just how tired he was, and probably why he cried.
Session 5: Fri, 29th Oct 2010
The boss accompanied us in the chamber. He was genuinely kind and managed to get my son to laugh while in the chamber! My son was so well behaved during the session that it amazed the boss too. I was very relieved there was none of the fretting or crying of the past few days.
We brought in a plastic urinal into the chamber this time round so it made things a lot easier! Didn’t I say that they are really responsive?
Session 6: Sat, 30th Oct 2010
Luckily no one else had booked the chamber for Saturday mornings, so we can complete the 40 sessions faster. We rested a bit, did a few pages of worksheets, made up some literacy games, and read a book (and of course, he used the urinal).
One important tip that the boss told me was to keep the hood slightly puffed (that would indicate that the hood is filled with oxygen). I tend to have a bit of hassle with the neck seal. When my son moves, the neck seal gets loose and I’ve to try to stick the latex together. It’s not a major problem. It’s just that I’ve to be more alert to it from now on.
The staff’s response was to wipe it down with sanitiser (prior to entering the chamber) which makes it stickier.
We tried him on the mask but things didn’t work out as expected, and when he wanted to urinate, we decided to cut short the session to just half hour. He fell asleep just as we got home so I put him to sleep still in his scrubs. He must have been so tired cos he slept for 3 hours straight.
Session 4: Thurs, 28th Oct 2010
Reverted back to using the hood, but also brought in the mask (as thoughtfully suggested by the staff) to be used if he fell asleep in the chamber.
Half way through the session, he needed to urinate! So we “went back up” to allow him to use the toilet, then “went back down”. As it was decompressing, he started to fret and cried (he seldom cries nowadays), so we stopped the session half way. He probably felt discomfort having gone down and up and down again.
Again, he fell asleep on the way home, and this time, he slept for 4 hours straight! During the first two hours of his nap, he didn’t move an inch! That told me just how tired he was, and probably why he cried.
Session 5: Fri, 29th Oct 2010
The boss accompanied us in the chamber. He was genuinely kind and managed to get my son to laugh while in the chamber! My son was so well behaved during the session that it amazed the boss too. I was very relieved there was none of the fretting or crying of the past few days.
We brought in a plastic urinal into the chamber this time round so it made things a lot easier! Didn’t I say that they are really responsive?
Session 6: Sat, 30th Oct 2010
Luckily no one else had booked the chamber for Saturday mornings, so we can complete the 40 sessions faster. We rested a bit, did a few pages of worksheets, made up some literacy games, and read a book (and of course, he used the urinal).
One important tip that the boss told me was to keep the hood slightly puffed (that would indicate that the hood is filled with oxygen). I tend to have a bit of hassle with the neck seal. When my son moves, the neck seal gets loose and I’ve to try to stick the latex together. It’s not a major problem. It’s just that I’ve to be more alert to it from now on.
The staff’s response was to wipe it down with sanitiser (prior to entering the chamber) which makes it stickier.
Monday, November 1, 2010
Hyperbaric Oxygen: Sessions 1 - 2
Apart from his concert performance, the hyperbaric oxygen treatment (HBOT) had me very nervous.
I had initially planned to start HBOT on Monday morning, the day after his concert. However, I was such a nervous wreck that I couldn't even decide whether to postpone it to Tuesday instead. In the end, I just took the plunge (excuse the pun) and he had his first "dive" on Monday afternoon.
Session 1: Monday, 25 Oct 2010
Being locked up on a small space (can sit 4), having your son wear a latex neck seal and a plastic hood over his head with hoses attached, and wearing scrubs, is not a normal everyday experience. To say the least, the entire experience takes a bit of getting used to.
I was giving uncontrollably huge yawns every second to equalise the pressure as it was going down. To help my son, I was advised to have him drink through a straw (thanks for the tip Fe), which I had him do.
I'm so thankful that my son didn't cry or fuss on the 1st day. I could tell that he was a bit scared but was also being brave about it.
I think it helped greatly that he had a good experience when we visited their facility earlier this year, at which time I also had the hood briefly placed over his head (just to see his reaction). Then a few months ago, we visited their facility again at their new location on their Open Day, as I wanted him to feel comfortable with the set up. However, I must say that I prayed hard about it too!
To pass the time, they played the movie "Up" for us to watch. Since it was played on a laptop outside the chamber, viewed through a porthole, it was more of a silent movie version, and my son lost interest in it part way through. So we did some reading instead. I had prepared a bag full of worksheets, a few books, and a pencil for him so as to make it more productive (again, thanks for the tip Fe).
Session 2: Tuesday, 26 Oct 2010
He must have been very tired after the big school party that he fell asleep in the chamber.
After getting used to it, the chamber can be a bit relaxing especially when the lights are switched off, and cool air starts circulating. There are no noises, except for the blower occasionally going on and off to ventilate it. There are no distractions like the handphone, internet, visual reminders of chores yet to be done etc.
But it's not for those even mildly claustrophobic. Inside, it probably measures only 5 feet by 3 feet at widest, which is comfortable enough for my son and I.
The staff have been very kind and thoughtful. They had answered all my 20 odd questions via email, and further questions I had when I was there.
Having noted that I was very nervous, they were very patient, understanding and accomodating where possible.
They were kind enough to allow me to wear their scrubs (shirt and pants style) instead of the centre's gown. I could even bring it home for ease of changing into it in the comfort of my own home before driving to the chamber.
At the end of session 2 (when my son fell asleep), he saw that my son's hair was damp from sweat, he suggested that my son try the mask instead the next day.
So far, so good...
I had initially planned to start HBOT on Monday morning, the day after his concert. However, I was such a nervous wreck that I couldn't even decide whether to postpone it to Tuesday instead. In the end, I just took the plunge (excuse the pun) and he had his first "dive" on Monday afternoon.
Session 1: Monday, 25 Oct 2010
Being locked up on a small space (can sit 4), having your son wear a latex neck seal and a plastic hood over his head with hoses attached, and wearing scrubs, is not a normal everyday experience. To say the least, the entire experience takes a bit of getting used to.
I was giving uncontrollably huge yawns every second to equalise the pressure as it was going down. To help my son, I was advised to have him drink through a straw (thanks for the tip Fe), which I had him do.
I'm so thankful that my son didn't cry or fuss on the 1st day. I could tell that he was a bit scared but was also being brave about it.
I think it helped greatly that he had a good experience when we visited their facility earlier this year, at which time I also had the hood briefly placed over his head (just to see his reaction). Then a few months ago, we visited their facility again at their new location on their Open Day, as I wanted him to feel comfortable with the set up. However, I must say that I prayed hard about it too!
To pass the time, they played the movie "Up" for us to watch. Since it was played on a laptop outside the chamber, viewed through a porthole, it was more of a silent movie version, and my son lost interest in it part way through. So we did some reading instead. I had prepared a bag full of worksheets, a few books, and a pencil for him so as to make it more productive (again, thanks for the tip Fe).
Session 2: Tuesday, 26 Oct 2010
He must have been very tired after the big school party that he fell asleep in the chamber.
After getting used to it, the chamber can be a bit relaxing especially when the lights are switched off, and cool air starts circulating. There are no noises, except for the blower occasionally going on and off to ventilate it. There are no distractions like the handphone, internet, visual reminders of chores yet to be done etc.
But it's not for those even mildly claustrophobic. Inside, it probably measures only 5 feet by 3 feet at widest, which is comfortable enough for my son and I.
The staff have been very kind and thoughtful. They had answered all my 20 odd questions via email, and further questions I had when I was there.
Having noted that I was very nervous, they were very patient, understanding and accomodating where possible.
They were kind enough to allow me to wear their scrubs (shirt and pants style) instead of the centre's gown. I could even bring it home for ease of changing into it in the comfort of my own home before driving to the chamber.
At the end of session 2 (when my son fell asleep), he saw that my son's hair was damp from sweat, he suggested that my son try the mask instead the next day.
So far, so good...
Concert Performance - 2nd day
He did well on the second day too! I managed to see him perform up close (I peeped through the side door) as most of the parents of his classmates weren't there to block my view (they came on Day1).
At a point in time during his performance, he even smiled very naturally! My husband said that he looked more relaxed compared to Day 1. I'm very happy that he came both days!
Prior to his performance, I was again nervous even though he did well the day before. So I kept myself occupied by helping with the kids, and having my nasi lemak :)
This time round, I managed to speak to three other parents. Even though it was just for a few minutes each time, I was happy enough to have made the connection with them. You see, I don't get much chance to socialise!
Speaking with one of the parents brought a bit of perspective to my challenges, as I was again reminded that it can also be challenging when raising a typically developing child. Another parent of a typically developing child was encouraging and had kind words.
Monday, October 25, 2010
Concert Performance - 1st day
Woo hoo! He did great on his first day! Teacher was so very happy with the performance of his class, that she gave them a gigantic star on the whiteboard. The executive director told my husband and myself on separate occasions that my son did well.
He remembered to keep looking ahead and not be distracted by the other kids. He remembered to keep playing his drum. He even remembered teacher's advice to move forward if another kid was blocking him from being seen by the audience.
Blogger has fixed the image uploading problem but I didn't get the chance to take photos!
I chose to be with my son and his friends up until the time they walked onto the stage. I then quickly rushed to get into the hall but I couldn't even put a foot in as parents were blocking the way!
So I only managed to see his Indian dance performance on the LCD screens set up outside the hall to cater for the spillover. But for the grand finale, I managed to get in and watched from the back of the hall, together with my husband.
I was so nervous and excited that I was up just before 6am. I have to tell you that I stuffed my face... 2 hard boiled eggs at home for breakfast, then a big curry puff (bought from the food stalls set up in school) at 9.30am, a big packet of nasi lemak at 10am and another big curry puff at 11! I blame it on the nervous energy... and hey, it's hard work getting kids changed while maintaining your cool, and being grounded while there's a hive of activity around you. LOL
His first day of concert performance turned out well even though the night before he had said that he was "a bit scared". When we got home, and I asked him whether he was very scared (cos of the crowd and excitement in the air), he said he was "a bit brave"! Bravo my little boy! May he do well again on his second day!
Btw, his concert is held over 2 days because there isn't enough space to accomodate the parents of the entire school population. Hmm, more yummy breakfast again for me! LOL
He remembered to keep looking ahead and not be distracted by the other kids. He remembered to keep playing his drum. He even remembered teacher's advice to move forward if another kid was blocking him from being seen by the audience.
Blogger has fixed the image uploading problem but I didn't get the chance to take photos!
I chose to be with my son and his friends up until the time they walked onto the stage. I then quickly rushed to get into the hall but I couldn't even put a foot in as parents were blocking the way!
So I only managed to see his Indian dance performance on the LCD screens set up outside the hall to cater for the spillover. But for the grand finale, I managed to get in and watched from the back of the hall, together with my husband.
I was so nervous and excited that I was up just before 6am. I have to tell you that I stuffed my face... 2 hard boiled eggs at home for breakfast, then a big curry puff (bought from the food stalls set up in school) at 9.30am, a big packet of nasi lemak at 10am and another big curry puff at 11! I blame it on the nervous energy... and hey, it's hard work getting kids changed while maintaining your cool, and being grounded while there's a hive of activity around you. LOL
His first day of concert performance turned out well even though the night before he had said that he was "a bit scared". When we got home, and I asked him whether he was very scared (cos of the crowd and excitement in the air), he said he was "a bit brave"! Bravo my little boy! May he do well again on his second day!
Btw, his concert is held over 2 days because there isn't enough space to accomodate the parents of the entire school population. Hmm, more yummy breakfast again for me! LOL
Friday, October 22, 2010
Does he have friends?
A few months back, my best friend asked whether he has friends in school. Back then I wasn’t sure of the answer. Now, I think I can say that he DOES have friends!
He names 2 kids as his friends – a boy J, and the Japanese girl. She is sweet, gentle and smart, but I think his “crush” on her has waned. He no longer seeks her out to sit with her during circle time. Instead, he finds J to sit next to him.
He has yet to learn to use his words to say “excuse me please”. He instead acts like a VIP, whereby the person sitting next to J, has to move to the side to make way for my son to sit next to J. Sigh.
J is a gentle and kind boy who has taken a liking to my son. He shares a book with my son. He kinda plays with my son. Sometimes he mimics the funny action that my son does. Sometimes he makes funny faces at my son. Sometimes he puts his arm on my son’s shoulders. Sometimes he places his palms on my son’s cheeks and gently squeezes. Sometimes he gently strokes my son’s hair (I guess he sees my son as a baby to some extent) Sometimes they partner each other when lining up in twos.
About 2 weeks ago during play time, my son was looking for a group to join in. The other kids finished their snacks way earlier so were well into their games. My son approached a girl V, who was playing with another boy, and she didn’t want my son there. So she gave him 2 blocks and told him to go somewhere else (or so I gathered from their body language cos I was too far to hear her). She did the same to another boy (also special needs) the very next moment. Teacher saw it and advised her that it was not a nice thing to do, and suggested a different way.
Then last week at the playground during PE time, the very same girl, V, intentionally came to befriend my son. She held his hand and ran around with him, invited him to play the slide, followed behind him as he climbed the stairs to the top, slid down after him, smiling all the time. They went on to play on the merry-go-round-thingy with other kids. At the playground, the kids move 3 times faster than my son. They don’t wait for my son. So it really surprised me that someone was playing with him. I was cautiously happy to see that, cos I wondered if teacher had told her to take care of my son. I was even happier when teacher told me that she didn’t suggest or prompt V to do that.
There are 2 other girls, S and CSH who took a liking to my son from months back. But they definitely see him as a baby and treat him as such. They sometimes squeeze his cheeks (he’s learning to tell them to stop when he doesn’t like it). They sometimes carry him (he’s quite a bit smaller than them). They sometimes bring his bag or water bottle to him. They sometimes seek him out to be his partner when lining up in twos. CSH often tells me that my son is so cute.
Sure his cuteness gets him some mileage now. But he must have more confidence to speak and speak loud enough and with clarity.
My next challenge is to find play friends to meet on a regular basis outside school, as suggested by his music teacher to help him along his development. I say “challenge” cos he only has weekends free. For other kids however, weekends are usually precious family time especially when their mothers work and they most likely attend enrichment classes. There is someone I have in mind but have yet to broach the subject, and it’ll most likely only be in Dec during the school holidays. From next week onwards, he’ll be doing HBOT (Hyperbaric Oxygen Treatment) which is very intensive, and finish in early Dec.
I pray that his social skills continue improving and that he will always have good friends throughout his schooling years and beyond.
He names 2 kids as his friends – a boy J, and the Japanese girl. She is sweet, gentle and smart, but I think his “crush” on her has waned. He no longer seeks her out to sit with her during circle time. Instead, he finds J to sit next to him.
He has yet to learn to use his words to say “excuse me please”. He instead acts like a VIP, whereby the person sitting next to J, has to move to the side to make way for my son to sit next to J. Sigh.
J is a gentle and kind boy who has taken a liking to my son. He shares a book with my son. He kinda plays with my son. Sometimes he mimics the funny action that my son does. Sometimes he makes funny faces at my son. Sometimes he puts his arm on my son’s shoulders. Sometimes he places his palms on my son’s cheeks and gently squeezes. Sometimes he gently strokes my son’s hair (I guess he sees my son as a baby to some extent) Sometimes they partner each other when lining up in twos.
About 2 weeks ago during play time, my son was looking for a group to join in. The other kids finished their snacks way earlier so were well into their games. My son approached a girl V, who was playing with another boy, and she didn’t want my son there. So she gave him 2 blocks and told him to go somewhere else (or so I gathered from their body language cos I was too far to hear her). She did the same to another boy (also special needs) the very next moment. Teacher saw it and advised her that it was not a nice thing to do, and suggested a different way.
Then last week at the playground during PE time, the very same girl, V, intentionally came to befriend my son. She held his hand and ran around with him, invited him to play the slide, followed behind him as he climbed the stairs to the top, slid down after him, smiling all the time. They went on to play on the merry-go-round-thingy with other kids. At the playground, the kids move 3 times faster than my son. They don’t wait for my son. So it really surprised me that someone was playing with him. I was cautiously happy to see that, cos I wondered if teacher had told her to take care of my son. I was even happier when teacher told me that she didn’t suggest or prompt V to do that.
There are 2 other girls, S and CSH who took a liking to my son from months back. But they definitely see him as a baby and treat him as such. They sometimes squeeze his cheeks (he’s learning to tell them to stop when he doesn’t like it). They sometimes carry him (he’s quite a bit smaller than them). They sometimes bring his bag or water bottle to him. They sometimes seek him out to be his partner when lining up in twos. CSH often tells me that my son is so cute.
Sure his cuteness gets him some mileage now. But he must have more confidence to speak and speak loud enough and with clarity.
My next challenge is to find play friends to meet on a regular basis outside school, as suggested by his music teacher to help him along his development. I say “challenge” cos he only has weekends free. For other kids however, weekends are usually precious family time especially when their mothers work and they most likely attend enrichment classes. There is someone I have in mind but have yet to broach the subject, and it’ll most likely only be in Dec during the school holidays. From next week onwards, he’ll be doing HBOT (Hyperbaric Oxygen Treatment) which is very intensive, and finish in early Dec.
I pray that his social skills continue improving and that he will always have good friends throughout his schooling years and beyond.
Thursday, October 21, 2010
Neurosuit Physiotherapy Progress
There were very few days of therapy over the last 2-3 weeks cos his therapist was helping other kids overseas. That gave both my son and I a breather from the intensity of his physio programme. I did a lot of errands and planned ahead for the upcoming school holidays.
Just prior to that 2-3 weeks, I felt that it was getting too difficult for my son to do several of the exercises. I think that break helped him as it allowed him to rest. Perhaps that’s also why it was recommended to have a 2 week break for every 8 week intensive therapy stretch.
This week’s sessions have been great so far. Really great! Some of the exercises that were very hard for him just 3 weeks ago have become just “a bit hard” (his words).
Some of the improvements noted this week:
- More often than not, his feet are still in one spot (previously, he’d need to keep his feet moving around, often stepping on my toes many times!)
- He’s able to stretch his hamstrings effortlessly so much so that it’s almost like a ballerina’s split
- When lying down, he can raise his legs up easily
- When sitting down with legs in front of him (long sitting), he can touch his toes easily (sad to say, I can’t do that!)
- He is beginning to engage his arm muscles a bit more
- The muscles at his shoulder blades and the back of his neck are no longer tight (observed during CST session yesterday)
- His loud voice has returned!
Yesterday in class, I noticed that his handwriting had suddenly improved so much! He was practising writing for his spelling test. He wrote the words “rob” and “sob” within the blue lines of the exercise book all by himself, without needing me to place my hand on his. I noticed there was good flexibility and control although he was writing it slowly. Unfortunately, I am still having problems uploading photos on blogger, so I can’t share it with you.
There are still many other areas to work on, for example:
- He needs to engage the various muscles so he doesn’t keep sliding off the chair when he’s seated down
- Gluteus muscles not engaging
- Lower quad muscles need to be stronger
- Biceps and triceps not engaging enough and not strong
- He has winged shoulder blades
- His left arm and hand tends to rotate outwards
- His left hand is clenched often
- All 10 fingers need to be stronger
- Finger isolation not yet achieved
- No heel strike on his right foot when he runs, but fine when walking
- Running gait still funny
- Toes of right foot still sometimes curled
Yes, he has many more challenges to overcome in the future, but he has improved so much since starting the intensive Neurosuit therapy! I believe there were two key “ingredients”: the right therapist, and the intensity of the Neurosuit sessions.
These few days of improvements have made me so happy. Thank you, thank you, thank you, dear God. And thank you all for your prayer support! Thank you Fe for your dedication!
Just prior to that 2-3 weeks, I felt that it was getting too difficult for my son to do several of the exercises. I think that break helped him as it allowed him to rest. Perhaps that’s also why it was recommended to have a 2 week break for every 8 week intensive therapy stretch.
This week’s sessions have been great so far. Really great! Some of the exercises that were very hard for him just 3 weeks ago have become just “a bit hard” (his words).
Some of the improvements noted this week:
- More often than not, his feet are still in one spot (previously, he’d need to keep his feet moving around, often stepping on my toes many times!)
- He’s able to stretch his hamstrings effortlessly so much so that it’s almost like a ballerina’s split
- When lying down, he can raise his legs up easily
- When sitting down with legs in front of him (long sitting), he can touch his toes easily (sad to say, I can’t do that!)
- He is beginning to engage his arm muscles a bit more
- The muscles at his shoulder blades and the back of his neck are no longer tight (observed during CST session yesterday)
- His loud voice has returned!
Yesterday in class, I noticed that his handwriting had suddenly improved so much! He was practising writing for his spelling test. He wrote the words “rob” and “sob” within the blue lines of the exercise book all by himself, without needing me to place my hand on his. I noticed there was good flexibility and control although he was writing it slowly. Unfortunately, I am still having problems uploading photos on blogger, so I can’t share it with you.
There are still many other areas to work on, for example:
- He needs to engage the various muscles so he doesn’t keep sliding off the chair when he’s seated down
- Gluteus muscles not engaging
- Lower quad muscles need to be stronger
- Biceps and triceps not engaging enough and not strong
- He has winged shoulder blades
- His left arm and hand tends to rotate outwards
- His left hand is clenched often
- All 10 fingers need to be stronger
- Finger isolation not yet achieved
- No heel strike on his right foot when he runs, but fine when walking
- Running gait still funny
- Toes of right foot still sometimes curled
Yes, he has many more challenges to overcome in the future, but he has improved so much since starting the intensive Neurosuit therapy! I believe there were two key “ingredients”: the right therapist, and the intensity of the Neurosuit sessions.
These few days of improvements have made me so happy. Thank you, thank you, thank you, dear God. And thank you all for your prayer support! Thank you Fe for your dedication!
Monday, October 18, 2010
My invisibility super power
There's only a month left in the school year. Not much time indeed for him to practice his self care skills, school readiness, social skills etc.
About 2 or 3 weeks ago, I spoke to his teacher about my son doing without a shadow aide. She was agreeable to it, but she suggested we only start after the concert is over. Her reason being that she'll need a teacher's aide assigned to help her in the class if I'm not going to be his shadow aide, and the teacher's aides are all currently very busy with the daily concert practices.
I'd have to talk to the principal about it of course, to obtain her approval. Please pray for a positive outcome from talking to the principal.
Pls also pray that he copes well without me, and for the teacher to be able to give a positive report on my son (before he moves on to another class next year). This is also part of my planning ahead, in case his Primary school asks for a report from his kindergarten.
His teacher thinks he'll be fine without me, and that she'll be able to cope. But I wanted a "trial run period" to see how things might be. I didn't want to just disappear and really not know what happens.
So, I decided to invoke my invisibility super power! After I spoke to the teacher about it, I backed away even more than before from my son.
I tried to limit helping him to the times when he needed to go to the toilet, when there's a page of writing, when he clearly struggled with his water tumbler, opening/closing his food container, during computer time, helping him up the stairs to the stage for concert practice...
Doesn't sound much does it? But then, there are the littlest things that frustrate him or that requires a lot more practice, like...
...remembering what to do when he arrives in class cos he gets excited and wants to join his friends(remove water tumbler, pencil case, and homework folder, then find somewhere to place them, zip back the backpack, place backpack on rack, and remember to pick up those things to bring into class). Since this is quite a bit for him to remember, I do give verbal cues.
...zipping and unzipping his backpack. He's getting better at it. But when it's dismissal time and the bell rings, he gets too excited and fumbles too much.
...keeping his food container in his backpack
..."arranging" other kids bags on the rack so he has place for his bag
...inserting the exercise books into his homework folder
...learning social skills
...learning when he's not wanted (he got pushed, had his hand thumped, had his head butted by a girl!)
So you see, although he has come a long way, I still worry about how he'd cope.
I wonder whether he'd get to practice those skills or whether the teacher's aide would end up doing it for him if she runs out of patience.
Only one way to find out! To borrow a tag line: Just Do It
About 2 or 3 weeks ago, I spoke to his teacher about my son doing without a shadow aide. She was agreeable to it, but she suggested we only start after the concert is over. Her reason being that she'll need a teacher's aide assigned to help her in the class if I'm not going to be his shadow aide, and the teacher's aides are all currently very busy with the daily concert practices.
I'd have to talk to the principal about it of course, to obtain her approval. Please pray for a positive outcome from talking to the principal.
Pls also pray that he copes well without me, and for the teacher to be able to give a positive report on my son (before he moves on to another class next year). This is also part of my planning ahead, in case his Primary school asks for a report from his kindergarten.
His teacher thinks he'll be fine without me, and that she'll be able to cope. But I wanted a "trial run period" to see how things might be. I didn't want to just disappear and really not know what happens.
So, I decided to invoke my invisibility super power! After I spoke to the teacher about it, I backed away even more than before from my son.
I tried to limit helping him to the times when he needed to go to the toilet, when there's a page of writing, when he clearly struggled with his water tumbler, opening/closing his food container, during computer time, helping him up the stairs to the stage for concert practice...
Doesn't sound much does it? But then, there are the littlest things that frustrate him or that requires a lot more practice, like...
...remembering what to do when he arrives in class cos he gets excited and wants to join his friends(remove water tumbler, pencil case, and homework folder, then find somewhere to place them, zip back the backpack, place backpack on rack, and remember to pick up those things to bring into class). Since this is quite a bit for him to remember, I do give verbal cues.
...zipping and unzipping his backpack. He's getting better at it. But when it's dismissal time and the bell rings, he gets too excited and fumbles too much.
...keeping his food container in his backpack
..."arranging" other kids bags on the rack so he has place for his bag
...inserting the exercise books into his homework folder
...learning social skills
...learning when he's not wanted (he got pushed, had his hand thumped, had his head butted by a girl!)
So you see, although he has come a long way, I still worry about how he'd cope.
I wonder whether he'd get to practice those skills or whether the teacher's aide would end up doing it for him if she runs out of patience.
Only one way to find out! To borrow a tag line: Just Do It
Thursday, October 14, 2010
New schools for autistic children in Malaysia
Tonight, I was happy to read about 2 new schools for those with autism. My son isn't autistic but I'm happy because there are so many kids who are falling through the cracks in the education system. In Malaysia, it is really hard to find a school that accepts special needs children, one that is affordable, one that really will be inclusive and supportive.
In my search for a suitable school for my son, I was frustrated at the lack of choice, the ignorance, etc, and that was when I haboured a dream to set up a school that welcomes special needs kids. I can't begin to imagine the huge challenges involved in such an endevour which is why I don't really dare to dream it. So I find it absolutely amazing that a group of parents got together to start a school in Ipoh for their autistic children. How incredible is that!
So, I simply have to share the news below with you because it's given me hope for positive change in the world of special needs in Malaysia.
The news was taken from the Dignity And Services blog http://dignityandservices.blogspot.com/
------------------
NEW SCHOOLS FOR PEOPLE WITH AUTISM
Their teaching content may be different, but their intent is the same. Parents in Selangor and Perak are taking the initiative to set up schools to cater to autistic children who would otherwise fall through the cracks of the education system.
By Pang Hin Yue
AFTER helming the National Autism Society of Malaysia (NASOM) as its chairman for eight years , Mr Teh Beng Choon is still all fired up to push for changes for people with learning disabilities. Under his leadership, 16 nationwide centres providing Early Intervention Programme (EIP) and three vocational centres have been set up.
In addition to these, NASOM has its own one-stop centre for assessment and diagnosis that is supported by a dedicated team of experts that include three psychologists, two speech therapists and an occupational therapist. It is no small feat , for a nominal sum of fee, NASOM provides a multitude of services that cater to a wide ranging group of people, from pre-schoolers to adults . All of which are geared towards educating, empowering and liberating people with autism. And now Teh is taking it to the next level.
He is planning to set up a special school for autistic children who have been denied of a place in government schools owing to their multiple disabilities or who have not benefitted from the government’s special education programme. “It is open to all who one way or another, can’t fit into the current education system,” he explains.
He is targeting for the school to be set up by next year . For a token sum for rent , SP Setia Foundation has provided a premise for NASOM to run its EIP in Setia Alam, Shah Alam since April this year. NASOM hopes to expand to include its latest school pilot project. Although Teh and his secretariat staff are working hard to convince a major housing developer and the State government to support their endeavour to have a permanent site for the new school, he feels the time has come to, “just do it”.
What will set the new school apart from others? “It will be driven by parents. They will be the ones giving inputs and getting involved directly ,” he says. He believes that parents can make invaluable contributions given their experience in caring and managing their autistic children.
Teh’s empathy for parents who are hard pressed for an alternative school for autistic children stems from his own share of ups and downs in securing his son’s rights to education. Although diagnosed with autism, his highly intelligent son sat for UPSR and passed with flying colours. But he was denied entry to secondary school because he was under 12 when he sat for the national exam. That left Teh with no option except to admit his son to a private school and seek exemption from the Education Ministry. Today at 15, his son is studying for a foundation programme for a master degree in pharmacy at a leading university. Would the outcome be different had his son remained in the mainstream school system? “My son enjoys his time at the university because he is finally learning by exploring,” he says.
Teh strongly believes that children with autism – whether they are high or low functioning – should be given every opportunity to realise their full potential. Just because they can’t fit into the mainstream school system, it does not mean they should be denied of their right to be the best they can be.
“The conventional education system requires children to learn a wide variety of subjects, and may be in languages that they may not be accustomed to. Children with developmental disorders may take a longer time to learn them, a situation which is not afforded by our school system. Further, their innate impairments may hinder their learning process. Consequently they develop a poor self image and see themselves as failures, thereby impeding their progress. This is further compounded if carers also give up. Which is why the new school will be unconventional,” he explains.
Instead of teachers, there will be facilitators determining what each child wants to learn and what he is capable of learning, says Teh. Facilitators will explore various learning options until they find those that bring out the best in the child, he adds. For instance, if a child is more proficient in English, then his programme will be structured based on his spoken language.
“Ultimately, the learning process is to ensure the child is supported in areas where he shows potential , be it in the field of academia, music, art or cooking and work towards independence and job skills,” he says.
Towards this end, Teh invites parents and critics to give their thoughts and ideas how best the school should be operated and email to him at info@nasom.com.my .
Being a non-profit organisation, he is only too aware that for any of NASOM’s programmes to succeed and remain sustainable, it has to have the financial security and strong teams of staff supporting them . For instance, NASOM spends RM1 million annually to ensure 61 students across the country have teachers aides to help them study in mainstream schools.
For members of the public who wish to donate towards NASOM’s causes, he cautions against giving their money to any third party. “NASOM is not affliliated to any foundation or organization,” he stresses, adding that all donations are tax deductible and that NASOM welcomes volunteers.
Ends
For more details, contact NASOM Secretariat at 35A Jln SS21/37, 47400 PJ. Website: http://www.nasom.com.my/. Email: secretariat@nasom.com.my, tel: 03-77104098.
SPECIAL SCHOOL IN IPOH
DETERMINED not to settle for less, eight parents together with two advisors in Ipoh, Perak decided to set up a school for their autistic children. Calling themselves , Autism Support Association For Parents (ASAP), this motley crowd of parents went ahead and opened a school this year. With an undisclosed sum of money given by a generous donor, they found a double storey house and had it renovated. Says ASAP committee member, Tan Pek Imm, the members are thankful to find a retired teacher who accepted the challenge to run the school with the help of a teacher aide.
The school sessions are held in the afternoon, from 2-5pm with an enrollment capacity of six students. Mathematics, Science and English are taught based on the Singapore syllabus. “After examining the various teaching methods and contents, we settled for the Singapore syllabus because it allows our children the flexibility to take the secondary school level exam, one subject at a time,” explains Tan. She travelled to Singapore, spending time talking to officials at the island state’s education ministry and went away impressed.
“We prepare our kids to sit for ‘N’ Levels, ‘O’ Levels and ‘A’ Levels. We may also plan for them to sit for Cambridge exam upon completion of Year 6 in order to expose them to having exam in a public hall,” she says, adding that the school also offers other forms of interventional therapy for speech, behaviour and motor skills.
“ Next year, we plan to increase the number of classes to three to cater to a total of 18 students. The sessions will be held in the morning,” explains Tan whose son aged 13, had previously attended an international school in Ipoh before settling in his new school.
To ensure the viability of the school project and to garner support and services for families with autism in Perak, ASAP endeavours to increase its fund raising efforts with help from its patron, Datin Grace Lee.
ASAP invites parents to enroll their children at the new school. ASAP also welcomes those who are interested to be teachers to write in. For details, contact Charlotte at 016-4227076 (email: charlotteccy@yahoo.com) or Tan at 016-5535803 (email: immseng@streamyx.com)
In my search for a suitable school for my son, I was frustrated at the lack of choice, the ignorance, etc, and that was when I haboured a dream to set up a school that welcomes special needs kids. I can't begin to imagine the huge challenges involved in such an endevour which is why I don't really dare to dream it. So I find it absolutely amazing that a group of parents got together to start a school in Ipoh for their autistic children. How incredible is that!
So, I simply have to share the news below with you because it's given me hope for positive change in the world of special needs in Malaysia.
The news was taken from the Dignity And Services blog http://dignityandservices.blogspot.com/
------------------
NEW SCHOOLS FOR PEOPLE WITH AUTISM
Their teaching content may be different, but their intent is the same. Parents in Selangor and Perak are taking the initiative to set up schools to cater to autistic children who would otherwise fall through the cracks of the education system.
By Pang Hin Yue
AFTER helming the National Autism Society of Malaysia (NASOM) as its chairman for eight years , Mr Teh Beng Choon is still all fired up to push for changes for people with learning disabilities. Under his leadership, 16 nationwide centres providing Early Intervention Programme (EIP) and three vocational centres have been set up.
In addition to these, NASOM has its own one-stop centre for assessment and diagnosis that is supported by a dedicated team of experts that include three psychologists, two speech therapists and an occupational therapist. It is no small feat , for a nominal sum of fee, NASOM provides a multitude of services that cater to a wide ranging group of people, from pre-schoolers to adults . All of which are geared towards educating, empowering and liberating people with autism. And now Teh is taking it to the next level.
He is planning to set up a special school for autistic children who have been denied of a place in government schools owing to their multiple disabilities or who have not benefitted from the government’s special education programme. “It is open to all who one way or another, can’t fit into the current education system,” he explains.
He is targeting for the school to be set up by next year . For a token sum for rent , SP Setia Foundation has provided a premise for NASOM to run its EIP in Setia Alam, Shah Alam since April this year. NASOM hopes to expand to include its latest school pilot project. Although Teh and his secretariat staff are working hard to convince a major housing developer and the State government to support their endeavour to have a permanent site for the new school, he feels the time has come to, “just do it”.
What will set the new school apart from others? “It will be driven by parents. They will be the ones giving inputs and getting involved directly ,” he says. He believes that parents can make invaluable contributions given their experience in caring and managing their autistic children.
Teh’s empathy for parents who are hard pressed for an alternative school for autistic children stems from his own share of ups and downs in securing his son’s rights to education. Although diagnosed with autism, his highly intelligent son sat for UPSR and passed with flying colours. But he was denied entry to secondary school because he was under 12 when he sat for the national exam. That left Teh with no option except to admit his son to a private school and seek exemption from the Education Ministry. Today at 15, his son is studying for a foundation programme for a master degree in pharmacy at a leading university. Would the outcome be different had his son remained in the mainstream school system? “My son enjoys his time at the university because he is finally learning by exploring,” he says.
Teh strongly believes that children with autism – whether they are high or low functioning – should be given every opportunity to realise their full potential. Just because they can’t fit into the mainstream school system, it does not mean they should be denied of their right to be the best they can be.
“The conventional education system requires children to learn a wide variety of subjects, and may be in languages that they may not be accustomed to. Children with developmental disorders may take a longer time to learn them, a situation which is not afforded by our school system. Further, their innate impairments may hinder their learning process. Consequently they develop a poor self image and see themselves as failures, thereby impeding their progress. This is further compounded if carers also give up. Which is why the new school will be unconventional,” he explains.
Instead of teachers, there will be facilitators determining what each child wants to learn and what he is capable of learning, says Teh. Facilitators will explore various learning options until they find those that bring out the best in the child, he adds. For instance, if a child is more proficient in English, then his programme will be structured based on his spoken language.
“Ultimately, the learning process is to ensure the child is supported in areas where he shows potential , be it in the field of academia, music, art or cooking and work towards independence and job skills,” he says.
Towards this end, Teh invites parents and critics to give their thoughts and ideas how best the school should be operated and email to him at info@nasom.com.my .
Being a non-profit organisation, he is only too aware that for any of NASOM’s programmes to succeed and remain sustainable, it has to have the financial security and strong teams of staff supporting them . For instance, NASOM spends RM1 million annually to ensure 61 students across the country have teachers aides to help them study in mainstream schools.
For members of the public who wish to donate towards NASOM’s causes, he cautions against giving their money to any third party. “NASOM is not affliliated to any foundation or organization,” he stresses, adding that all donations are tax deductible and that NASOM welcomes volunteers.
Ends
For more details, contact NASOM Secretariat at 35A Jln SS21/37, 47400 PJ. Website: http://www.nasom.com.my/. Email: secretariat@nasom.com.my, tel: 03-77104098.
SPECIAL SCHOOL IN IPOH
DETERMINED not to settle for less, eight parents together with two advisors in Ipoh, Perak decided to set up a school for their autistic children. Calling themselves , Autism Support Association For Parents (ASAP), this motley crowd of parents went ahead and opened a school this year. With an undisclosed sum of money given by a generous donor, they found a double storey house and had it renovated. Says ASAP committee member, Tan Pek Imm, the members are thankful to find a retired teacher who accepted the challenge to run the school with the help of a teacher aide.
The school sessions are held in the afternoon, from 2-5pm with an enrollment capacity of six students. Mathematics, Science and English are taught based on the Singapore syllabus. “After examining the various teaching methods and contents, we settled for the Singapore syllabus because it allows our children the flexibility to take the secondary school level exam, one subject at a time,” explains Tan. She travelled to Singapore, spending time talking to officials at the island state’s education ministry and went away impressed.
“We prepare our kids to sit for ‘N’ Levels, ‘O’ Levels and ‘A’ Levels. We may also plan for them to sit for Cambridge exam upon completion of Year 6 in order to expose them to having exam in a public hall,” she says, adding that the school also offers other forms of interventional therapy for speech, behaviour and motor skills.
“ Next year, we plan to increase the number of classes to three to cater to a total of 18 students. The sessions will be held in the morning,” explains Tan whose son aged 13, had previously attended an international school in Ipoh before settling in his new school.
To ensure the viability of the school project and to garner support and services for families with autism in Perak, ASAP endeavours to increase its fund raising efforts with help from its patron, Datin Grace Lee.
ASAP invites parents to enroll their children at the new school. ASAP also welcomes those who are interested to be teachers to write in. For details, contact Charlotte at 016-4227076 (email: charlotteccy@yahoo.com) or Tan at 016-5535803 (email: immseng@streamyx.com)
Wednesday, October 13, 2010
Full Dress Rehearsal
It was full dress concert rehearsal today. It was the first time they had to perform in their costumes on stage. The professional photographer was there, so the pressure was on.
My anxiety over the event started yesterday. I was probably more anxious than he was! LOL I had strange dreams and drifted in and out of sleep last night. I was concerned he forget to play his drum and end up standing there like a statue, looking left, right and behind at his friends. I was concerned the “powers that be” might be upset with him for “spoiling” the performance.
I was also worried about waking up on time. In the end, I woke at 5.30am, before my alarm clock went off for 6am. That’s just me! Imagine how super nervous I am about missing a flight!
It was a party atmosphere in school. So fun! Kids came in make-up, even boys! Photographer went round classes taking shots. The teacher and I helped the kids change into and out of their clothes, decorations, and shoes. His classmates were in various brightly coloured Indian costumes. All the kids looked so good that I took many photos of my son with them.
That’s one of the privileges of being his shadow aide – I get to take photos when it’s less chaotic. It’d be far more stressful and chaotic on the actual concert day with parents buzzing in and out, trying to take photos etc.
So how was his performance? Well, I was nervous for him and busy taking photos that it was a bit of a blur. I know there were times he forgot to play his drum, there were times he turned to look at others around him, and at times he looked a bit dazed by it all. Maybe I should borrow a video cam and have my husband record it on the actual day!
I think the whole thing got a bit much for him. He’s a bit confused by the different and contradicting instructions he’s received over the recent past few weeks. There’s also probably a bit of system overload. The music is really loud and fast. He’s got to remember to constantly play his drum. He’s got to look forward and smile. He was probably worried that his friend might forget to come and lead him to his next position. He has to remember to adjust his position if someone happens to stand in front of him and block him. He has to remember to move forward with the rest of the boys for the finale. He has to remember to take a bow with the others. He has to remember to walk off the stage with the rest.
It’s not much to remember at all if he were a typically developing kid. The other kids get far more complicated dance steps which I doubt I could do myself! But he’s not typical. His processing time is slow. His therapist is also working on bringing his various internal systems to work together at the same time. For example, simple kids song with action like “the sailor went to see, see, see, to see what he could see, see, see” require recall of the song, speech, hand movement, proprioception, timing. It’s quite demanding on the brain.
However, at the end of the day, I’m happy. I’m happy he got the chance to be with his friends on stage. I’m happy the teacher was supportive of him and specially thought of a role that suitable for him. I’m happy he wanted to get on stage with his friends and perform. I’ll sleep happy tonight : )
My anxiety over the event started yesterday. I was probably more anxious than he was! LOL I had strange dreams and drifted in and out of sleep last night. I was concerned he forget to play his drum and end up standing there like a statue, looking left, right and behind at his friends. I was concerned the “powers that be” might be upset with him for “spoiling” the performance.
I was also worried about waking up on time. In the end, I woke at 5.30am, before my alarm clock went off for 6am. That’s just me! Imagine how super nervous I am about missing a flight!
It was a party atmosphere in school. So fun! Kids came in make-up, even boys! Photographer went round classes taking shots. The teacher and I helped the kids change into and out of their clothes, decorations, and shoes. His classmates were in various brightly coloured Indian costumes. All the kids looked so good that I took many photos of my son with them.
That’s one of the privileges of being his shadow aide – I get to take photos when it’s less chaotic. It’d be far more stressful and chaotic on the actual concert day with parents buzzing in and out, trying to take photos etc.
So how was his performance? Well, I was nervous for him and busy taking photos that it was a bit of a blur. I know there were times he forgot to play his drum, there were times he turned to look at others around him, and at times he looked a bit dazed by it all. Maybe I should borrow a video cam and have my husband record it on the actual day!
I think the whole thing got a bit much for him. He’s a bit confused by the different and contradicting instructions he’s received over the recent past few weeks. There’s also probably a bit of system overload. The music is really loud and fast. He’s got to remember to constantly play his drum. He’s got to look forward and smile. He was probably worried that his friend might forget to come and lead him to his next position. He has to remember to adjust his position if someone happens to stand in front of him and block him. He has to remember to move forward with the rest of the boys for the finale. He has to remember to take a bow with the others. He has to remember to walk off the stage with the rest.
It’s not much to remember at all if he were a typically developing kid. The other kids get far more complicated dance steps which I doubt I could do myself! But he’s not typical. His processing time is slow. His therapist is also working on bringing his various internal systems to work together at the same time. For example, simple kids song with action like “the sailor went to see, see, see, to see what he could see, see, see” require recall of the song, speech, hand movement, proprioception, timing. It’s quite demanding on the brain.
However, at the end of the day, I’m happy. I’m happy he got the chance to be with his friends on stage. I’m happy the teacher was supportive of him and specially thought of a role that suitable for him. I’m happy he wanted to get on stage with his friends and perform. I’ll sleep happy tonight : )
Radiant Child® Yoga Workshop
I thought of joining the Radiant Child Yoga workshop to learn more about various exercises that are beneficial for my son because I realise, through his therapist Fezia, that several exercises done during his Neurosuit therapy are similar to those done in yoga.
However, I'll have to miss it this time round because my son is not yet able to feed himself independently and I do not trust my helper to feed him.
I have attended Fezia's yoga sessions myself and found them effective. That's why I believe it would help my son improve his range of motion, his co-ordination, his strength. Perhaps it might benefit your child too, whether a typical child or a differently-abled child.
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About the Trainer...
Fezia Tyebally has a passion for yoga! She is a Radiant Child Yoga ® Facilitator, certified to teach levels 1 and 2, a certified Kundalini Yoga teacher, a licensed practitioner in Yoga for the Special Child™, and is a certified Yoga therapist at the 500 level. Fezia has lectured extensively in Southeast Asia on programmes for children with special needs. She currently teaches a module that she has created for adapting children’s yoga for the differently-abled child; ranging from Cerebral Palsy to Autism.
As a therapist, Fezia'’s yoga sessions naturally lean towards the therapeutic benefits, but her playful nature ensures classes are fun and lighthearted. With a home base of Kuala Lumpur, Malaysia, she is available to teach Radiant Child Yoga in Asia, Australia, and other parts of the world as well.
In addition to these very specialised therapy skills, Fezia is a trained CranioSacral therapist who completed her Advanced level and Pediatric level training with the Upledger Institute. She has also completed a two-year diploma course in Biodynamic CranioSacral Therapy
Radiant Child® Yoga Program (RCYP) is a comprehensive training program designed for anyone who is interested in teaching children yoga. The vision of RCYP is to create a world of peace through the union of yoga and children.
RCYP was founded by Shakta Kaur Khalsa, who recognized the need for children to be given the opportunity to thrive and blossom through the gift of yoga. Radiant Child Yoga began in 1999, and is one of the very first training programs for teaching children yoga ever offered anywhere in the world. It has grown from teaching groups of 5 or 10 to groups of 50-100 as yoga for children has become more widely known for its beneficial effect on children’s health and happiness
RCYP participants include yoga teachers of all traditions, schoolteachers, therapists, parents and grandparents. Previous yoga experience is helpful although not required. Participants gain a wide variety of practical yoga tools and tips, and have fun playing at being a child again.
RCYP has been approved for CEUs in public schools, as well as Yoga Alliance 500 level accreditation. This course has been presented at Montessori and Head Start conferences and therapy centers for ADHD and Autism worldwide. Radiant Child Yoga has been featured in major newspapers around the world, and well-known publications such as Odyssey magazine in South Africa, and Yoga Plus in the United States.
Course detail:
Date: 22nd Oct 2010 ~ 24 Oct 2010
Time:
22nd Oct 2010: 7pm - 9.30pm
23rd & 24th Oct: 9am - 5pm
Course fee: RM1200 per person
(including 4CD's 1DVD Yoga in Motion, training manual, Yoga in Motion book)
To register you can
email: info@lightonearth.my
or call the organiser @+603-7729 0068
However, I'll have to miss it this time round because my son is not yet able to feed himself independently and I do not trust my helper to feed him.
I have attended Fezia's yoga sessions myself and found them effective. That's why I believe it would help my son improve his range of motion, his co-ordination, his strength. Perhaps it might benefit your child too, whether a typical child or a differently-abled child.
---------
About the Trainer...
Fezia Tyebally has a passion for yoga! She is a Radiant Child Yoga ® Facilitator, certified to teach levels 1 and 2, a certified Kundalini Yoga teacher, a licensed practitioner in Yoga for the Special Child™, and is a certified Yoga therapist at the 500 level. Fezia has lectured extensively in Southeast Asia on programmes for children with special needs. She currently teaches a module that she has created for adapting children’s yoga for the differently-abled child; ranging from Cerebral Palsy to Autism.
As a therapist, Fezia'’s yoga sessions naturally lean towards the therapeutic benefits, but her playful nature ensures classes are fun and lighthearted. With a home base of Kuala Lumpur, Malaysia, she is available to teach Radiant Child Yoga in Asia, Australia, and other parts of the world as well.
In addition to these very specialised therapy skills, Fezia is a trained CranioSacral therapist who completed her Advanced level and Pediatric level training with the Upledger Institute. She has also completed a two-year diploma course in Biodynamic CranioSacral Therapy
Radiant Child® Yoga Program (RCYP) is a comprehensive training program designed for anyone who is interested in teaching children yoga. The vision of RCYP is to create a world of peace through the union of yoga and children.
RCYP was founded by Shakta Kaur Khalsa, who recognized the need for children to be given the opportunity to thrive and blossom through the gift of yoga. Radiant Child Yoga began in 1999, and is one of the very first training programs for teaching children yoga ever offered anywhere in the world. It has grown from teaching groups of 5 or 10 to groups of 50-100 as yoga for children has become more widely known for its beneficial effect on children’s health and happiness
RCYP participants include yoga teachers of all traditions, schoolteachers, therapists, parents and grandparents. Previous yoga experience is helpful although not required. Participants gain a wide variety of practical yoga tools and tips, and have fun playing at being a child again.
RCYP has been approved for CEUs in public schools, as well as Yoga Alliance 500 level accreditation. This course has been presented at Montessori and Head Start conferences and therapy centers for ADHD and Autism worldwide. Radiant Child Yoga has been featured in major newspapers around the world, and well-known publications such as Odyssey magazine in South Africa, and Yoga Plus in the United States.
Course detail:
Date: 22nd Oct 2010 ~ 24 Oct 2010
Time:
22nd Oct 2010: 7pm - 9.30pm
23rd & 24th Oct: 9am - 5pm
Course fee: RM1200 per person
(including 4CD's 1DVD Yoga in Motion, training manual, Yoga in Motion book)
To register you can
email: info@lightonearth.my
or call the organiser @+603-7729 0068
Tuesday, October 12, 2010
Hyperbaric Oxygen Treatment
I plan to start this new therapy for my son soon.
Please pray for all the 40 sessions to go smoothly and be effective in helping my son. As with any medical treatment, this is not without its risks.
I thought of sharing with you what is HBOT about. Below are some of the information I gathered from the internet.
--------------
What it is....
Hyperbaric oxygen therapy (HBOT) refers to intermittent treatment of the entire body with 100-percent oxygen at greater than normal atmospheric pressure.
This increased pressure, combined with an increase in oxygen to 100 percent, dissolves oxygen in the blood plasma and in all body cells, tissues and fluids at up to 10 times normal concentration
Normally oxygen moves through the body only by way of your red blood cells. With HBOT, the oxygen is pushed into all of the body's fluids--the plasma, lymph, central nervous system fluids, as well as the bones and ligaments--where blood flow is lacking
How it helps...
By using HBOT, additional oxygen can reach the damaged areas and assist tissues and the body to heal faster. Increased oxygen flow enhances the ability of white blood cells to kill bacteria, reduces inflammation and allows new blood vessels to grow more rapidly in the affected areas.
Most people have only heard of using a hyperbaric chamber for the "bends," another name for sickness brought on by an air embolism. But many other conditions such as stroke, cerebral palsy, head injuries and chronic fatigue have all benefited from HBOT.
One of the scientific research says...
Hyperbaric Oxygenation Therapy in the Treatment of Cerebral Palsy: A Review and Comparison to Currently Accepted Therapies (published in the Journal of American Physicians and Surgeons, Volume 12, Number 4, Winter 2007) -
"The 10 studies on the treatment of CP with HBOT presented in Table 3, even though some have a small number of participants, have all demonstrated significant and often impressive improvements compared with what is seen from the majority of known and accepted therapeutic approaches for this condition.
In fact, depending on the age and the severity of the condition of children with CP, the rate of progress (see Table 4) measured with the GMFM can be up to five times higher than the one obtained with intensive physiotherapy (PT) or even after rhizotomy followed by intensive PT.
So far, no recognized approaches in the treatment of CP have shown faster or more impressive positive changes in gross motor function. Moreover, most recognized approaches like PT or rhizotomy do not improve cognition or communication. HBOT has an effect on global function of the brain and, besides the very important changes in motor function, the most common improvements reported by more than 80% of the parents are in cognition and language."
Please pray for all the 40 sessions to go smoothly and be effective in helping my son. As with any medical treatment, this is not without its risks.
I thought of sharing with you what is HBOT about. Below are some of the information I gathered from the internet.
--------------
What it is....
Hyperbaric oxygen therapy (HBOT) refers to intermittent treatment of the entire body with 100-percent oxygen at greater than normal atmospheric pressure.
This increased pressure, combined with an increase in oxygen to 100 percent, dissolves oxygen in the blood plasma and in all body cells, tissues and fluids at up to 10 times normal concentration
Normally oxygen moves through the body only by way of your red blood cells. With HBOT, the oxygen is pushed into all of the body's fluids--the plasma, lymph, central nervous system fluids, as well as the bones and ligaments--where blood flow is lacking
How it helps...
By using HBOT, additional oxygen can reach the damaged areas and assist tissues and the body to heal faster. Increased oxygen flow enhances the ability of white blood cells to kill bacteria, reduces inflammation and allows new blood vessels to grow more rapidly in the affected areas.
Most people have only heard of using a hyperbaric chamber for the "bends," another name for sickness brought on by an air embolism. But many other conditions such as stroke, cerebral palsy, head injuries and chronic fatigue have all benefited from HBOT.
One of the scientific research says...
Hyperbaric Oxygenation Therapy in the Treatment of Cerebral Palsy: A Review and Comparison to Currently Accepted Therapies (published in the Journal of American Physicians and Surgeons, Volume 12, Number 4, Winter 2007) -
"The 10 studies on the treatment of CP with HBOT presented in Table 3, even though some have a small number of participants, have all demonstrated significant and often impressive improvements compared with what is seen from the majority of known and accepted therapeutic approaches for this condition.
In fact, depending on the age and the severity of the condition of children with CP, the rate of progress (see Table 4) measured with the GMFM can be up to five times higher than the one obtained with intensive physiotherapy (PT) or even after rhizotomy followed by intensive PT.
So far, no recognized approaches in the treatment of CP have shown faster or more impressive positive changes in gross motor function. Moreover, most recognized approaches like PT or rhizotomy do not improve cognition or communication. HBOT has an effect on global function of the brain and, besides the very important changes in motor function, the most common improvements reported by more than 80% of the parents are in cognition and language."
An excerpt from the book "The Synergy of Body/Brain Repair" by Virginia Neubauer:
"Plasticity is one of the most important mechanisms of brain repair and involves the redirection and reeducation of neurons to make new pathways to learn and improve both cognitive and motor skills. Following any brain insult there is a period of plasticity while the brain and body compensate and attempt to overcome and rewire their connections to learn to take over the tasks of the damaged neurons.
In children, plasticity is ongoing, as the brain is in development and still growing new brain cells. Just as babies need to be taught to walk and talk, newly awakened neurons need to be redirected and retrained.
HBOT, the safe, non-invasive use of 100% oxygen under greater than atmospheric pressure, has been clearly proven to reactivate and facilitate dormant, idling, damaged neurons that had been receiving enough oxygen to exist but not enough to function or fire electrically. The reactivation of these cells with HBOT opens up whole new areas of plasticity so that the brain is able to learn or relearn the skills that are necessary for proper function of both the brain, as it relates to cognitive function, and the body as the brain makes new connections for recovery of trunk, limb and muscle movement.
New neurons are like newborn babies. They need direction for their optimal growth and development. This is why a multi-disciplinary approach to brain injury in cerebral palsy and the brain injured child is so crucial to the outcome. The sooner the new neurons can be redirected to take on the tasks of the damaged areas the more promising the prognosis. It is the intensive therapy and strength training that redirect the brain cells when they are reactivated by HBOT to form the necessary pathways for functional recovery. The synergy of the two approaches combined demonstrates a good and positive outcome for the child."
"Plasticity is one of the most important mechanisms of brain repair and involves the redirection and reeducation of neurons to make new pathways to learn and improve both cognitive and motor skills. Following any brain insult there is a period of plasticity while the brain and body compensate and attempt to overcome and rewire their connections to learn to take over the tasks of the damaged neurons.
In children, plasticity is ongoing, as the brain is in development and still growing new brain cells. Just as babies need to be taught to walk and talk, newly awakened neurons need to be redirected and retrained.
HBOT, the safe, non-invasive use of 100% oxygen under greater than atmospheric pressure, has been clearly proven to reactivate and facilitate dormant, idling, damaged neurons that had been receiving enough oxygen to exist but not enough to function or fire electrically. The reactivation of these cells with HBOT opens up whole new areas of plasticity so that the brain is able to learn or relearn the skills that are necessary for proper function of both the brain, as it relates to cognitive function, and the body as the brain makes new connections for recovery of trunk, limb and muscle movement.
New neurons are like newborn babies. They need direction for their optimal growth and development. This is why a multi-disciplinary approach to brain injury in cerebral palsy and the brain injured child is so crucial to the outcome. The sooner the new neurons can be redirected to take on the tasks of the damaged areas the more promising the prognosis. It is the intensive therapy and strength training that redirect the brain cells when they are reactivated by HBOT to form the necessary pathways for functional recovery. The synergy of the two approaches combined demonstrates a good and positive outcome for the child."
Monday, October 11, 2010
Workbooks from BookXcess bookshop
I've stopped buying reader books from bookshops since I joined the library. But I have bought workbooks for my son when I happen to be at a bookshop.
Books sold there are brand new (unlike places like Why Pay More Books) and reasonably priced. They are able to offer good prices because they buy "stock over-runs" from the publisher or distributor.
My son likes this "Coming Top" series and I bought several topics and several age groups of most of the topics.
The ones in this post were bought from BookXcess. BookXcess is on the third floor of Amcorp Mall, PJ. Tel: 79560455. Website: http://www.bookxcess.com/. They have a list of books (children's section) on their website so you can see if what you want is carried there.
My son likes this "Coming Top" series and I bought several topics and several age groups of most of the topics. Each book is not exactly cheap (RM8.90) compared to the locally available workbooks, but it is at a discounted price, and it is of good quality. The pages are of good quality paper, so it's easier for him to turn the page by himself. All the pages are in full colour and attractively designed, so it keeps him interested and he himself chooses to work on it.
There are lots of good quality cute and colourful stickers to reward him with, as well as the usual gold star stickers. There are lots of extra stickers given so I plan to use them for other self created activities.
For the younger age group of 3-4, he is usually able to work through it without supervision. I feel that it helps build up his confidence.
Importantly too, the activities are rather well thought out. It presents one small idea at a time. It progresses slowly through out the book. This can't be said of the workbooks he has in school! I've spotted errors in his school workbooks, activities that are not suitable for their age, activities that are not well thought out (too many layers within one page).
 |
| The package: before removing the plastic shrink wrap |
This LeapFrog workbook package was recently bought from BookXcess also.
It was a pretty good deal. For RM34.90, you get 2 wipe clean books, 3 normal workbooks with a CD each, 2 packs of flashcards (addition and subtraction), and a non-woven foldable box to store them. All pages are in full colour.
Books are for age group 3-6. Some of it is easy for my son, but I still bought them because he needs a lot of writing practice. He uses Crayola washable markers, but you can instead get whiteboard markers, which are easily available.
 |
| Back view of the package before opening it up |
 |
| 5 books, 2 flashcard packs, 3 CDs inside the books, a storage box |
 |
| A page in one of the wipe clean books |
Sunday, October 10, 2010
My insurance policy made me sick
I've not been able to sleep well for the past 12 consecutive days. That was very likely the reason why I've been having bad headaches and am now mildy sick.
There have been several things on my mind but the main worry that has gotten me so upset is my life insurance. I feel so cheated by my agent and the insurer.
I was told I need only pay premiums for an estimated 16 yrs at the point of signing and nothing more thereafter. Now I find out that it's not 16 years, but 33 years. Fair enough that estimates are just that, estimates. But doubling 16 years to 33 years is outrageous!
There's not much I can do about it since I've paid 11years worth of premiums, and will lose RM17,000 if I decide to cancel it now.
I dont need to emphasise that that is a lot of money. That would have covered 120 hours of hyperbaric oxygen treatment, or 210 hours of Neurosuit therapy. I'm so mad.
The agent has been extremely slow in providing the numbers and information to enable me to make a decision whether to cancel the riders or to cancel the policy in its entirety.
At the moment I do not know what I should do. And that is driving me nuts. I'm still so mad.
My son is also mildly sick. I hope it wasn't me who passed the germs to him. There are 2 kids in his class who had flu symptoms and another 2 who were absent last Friday. I pray he be well soon as his concert full dress rehearsal is on this Wednesday. That's when the professional photographer will be snapping the photos and recording it on video.
There have been several things on my mind but the main worry that has gotten me so upset is my life insurance. I feel so cheated by my agent and the insurer.
I was told I need only pay premiums for an estimated 16 yrs at the point of signing and nothing more thereafter. Now I find out that it's not 16 years, but 33 years. Fair enough that estimates are just that, estimates. But doubling 16 years to 33 years is outrageous!
There's not much I can do about it since I've paid 11years worth of premiums, and will lose RM17,000 if I decide to cancel it now.
I dont need to emphasise that that is a lot of money. That would have covered 120 hours of hyperbaric oxygen treatment, or 210 hours of Neurosuit therapy. I'm so mad.
The agent has been extremely slow in providing the numbers and information to enable me to make a decision whether to cancel the riders or to cancel the policy in its entirety.
At the moment I do not know what I should do. And that is driving me nuts. I'm still so mad.
My son is also mildly sick. I hope it wasn't me who passed the germs to him. There are 2 kids in his class who had flu symptoms and another 2 who were absent last Friday. I pray he be well soon as his concert full dress rehearsal is on this Wednesday. That's when the professional photographer will be snapping the photos and recording it on video.
Friday, October 8, 2010
5 minutes to go
It was the last activity of the day. Teacher guided the kids through the BM workbook activity. They were to match the pictures to the written words.
There must have been about 12 words, which is quite a bit considering the kids are not strong in BM. Teacher made it easier for the kids by replicating onto the whiteboard, the entire page of the workbook. Furthermore, teacher had drawn lines to match the pictures to the words.
So really, all the kids had to do was to copy the “answer” from the whiteboard. How hard is that? (Forget for a moment the fact that I don’t quite agree with kids just copying the answer. Was the learning objective really achieved?)
It started out fine. For about the first one or two minutes, the kids attempted it on their own. My son was using his knowledge of suku kata to decipher the words and match it to the picture. He managed to do 2 pictures when teacher announced, “You only have five minutes before the bell rings. So hurry up.” My son panicked! He shrieked! He couldn’t think straight anymore. He didn’t know which picture matched which word.
So I stepped in to help him. Very soon I was surrounded by 4 other kids also panicking. With high pitched voices, they were desperately trying to get my attention to help them complete their work.
“Aunty! Aunty! Help me! Which one does this match to? Which one?!!!”
“Aunty! Aunty! Aunty! Is this correct?”
“Aunty! Aunty! Quick! Quick! Tell me! Which one?!”
Normally, I do not just give the answer, whether it’s my son or another kid asking me because the child would have lost a learning opportunity. Instead, I guide them towards the answer.
But oh my gosh. I couldn’t guide them this time. Not when there were four of them (excluding my son) coming to me at the same time, all panicking. It was hilarious! It was like a scene from a slapstick comedy or kids’ cartoon.
I “surrendered” and got the teacher’s attention. The teacher quickly calmed them down by saying that it’s alright, and that they could continue the next day.
It reminded me of what happened at music class a few Saturdays ago. The kids were to replicate a pattern using magnetic seeds, as many times as possible, before a song finishes. It was so funny to see how the reacted when the tempo was increased. Panic! My son was doing his funny jumping motion, his hands were moving around really fast without really achieving anything, his brain was frozen!
If I were in his shoes, I would have done exactly the same thing – panic! It was very interesting to note that others react in the same manner.
My learning outcome from all this? Teach my son how to stay calm under time pressure. Easier said than done!
There must have been about 12 words, which is quite a bit considering the kids are not strong in BM. Teacher made it easier for the kids by replicating onto the whiteboard, the entire page of the workbook. Furthermore, teacher had drawn lines to match the pictures to the words.
So really, all the kids had to do was to copy the “answer” from the whiteboard. How hard is that? (Forget for a moment the fact that I don’t quite agree with kids just copying the answer. Was the learning objective really achieved?)
It started out fine. For about the first one or two minutes, the kids attempted it on their own. My son was using his knowledge of suku kata to decipher the words and match it to the picture. He managed to do 2 pictures when teacher announced, “You only have five minutes before the bell rings. So hurry up.” My son panicked! He shrieked! He couldn’t think straight anymore. He didn’t know which picture matched which word.
So I stepped in to help him. Very soon I was surrounded by 4 other kids also panicking. With high pitched voices, they were desperately trying to get my attention to help them complete their work.
“Aunty! Aunty! Help me! Which one does this match to? Which one?!!!”
“Aunty! Aunty! Aunty! Is this correct?”
“Aunty! Aunty! Quick! Quick! Tell me! Which one?!”
Normally, I do not just give the answer, whether it’s my son or another kid asking me because the child would have lost a learning opportunity. Instead, I guide them towards the answer.
But oh my gosh. I couldn’t guide them this time. Not when there were four of them (excluding my son) coming to me at the same time, all panicking. It was hilarious! It was like a scene from a slapstick comedy or kids’ cartoon.
I “surrendered” and got the teacher’s attention. The teacher quickly calmed them down by saying that it’s alright, and that they could continue the next day.
It reminded me of what happened at music class a few Saturdays ago. The kids were to replicate a pattern using magnetic seeds, as many times as possible, before a song finishes. It was so funny to see how the reacted when the tempo was increased. Panic! My son was doing his funny jumping motion, his hands were moving around really fast without really achieving anything, his brain was frozen!
If I were in his shoes, I would have done exactly the same thing – panic! It was very interesting to note that others react in the same manner.
My learning outcome from all this? Teach my son how to stay calm under time pressure. Easier said than done!
Thursday, October 7, 2010
Speech therapy - 6 Oct 2010
He had his speech therapy today. It’s been 4 mths since his previous session.
I prayed for a good session where he’d readily speak. In the past it was difficult to get him to talk during the session. I wanted him to talk freely the way he does with me at home. I wanted her to experience that so that she has a more accurate picture, so that she could give a more accurate assessment, and so that she would be able to write a more positive report should his future school require one.
Prayer answered! Thank you God! He did well at therapy. He didn’t speak as much as he does at home, but it’s a whole lot better than in past sessions. He spoke in short sentences and longer phrases. In the past it was mostly one word answers or short phrases. It was also much easier to elicit responses from him.
One of the games that we played was like a game of broken telephone. The therapist would whisper a sentence to my son while I turned away and had my ears closed. Then he was to tell me what she said. For most of the time, I understood him. Then it was reversed, where I whispered to him, and he repeats it to the therapist. Most of the time, she understood too! In all there were probably 6-8 sentences, and with roughly 90% accuracy in repeating what was whispered, I’m very happy and so was she.
She noted the following in terms of physical appearance: he’s more stable; his response time is faster; his core is stronger. In terms of speech: he doesn’t strain or exert energy to talk; there’s improvement in clarity. I attribute all that to the intensive Neurosuit therapy that he’s undergone – thanks Adnan and Fezia.
We didn’t get to discuss much cos my son needed 3 toilet breaks (one to pee, twice to poo) which took put some time. I did ask her opinion about VitalStim therapy and I’m unlikely to pursue that therapy. She’ll be attending Caroline Bowen’s workshop, so she’ll be sharing some of the things that she’ll learn which applies to my son’s case (I decided not to attend the workshop cos I don’t trust my current helper in caring for my son for a full day without me).
Next session will be in 3 months’ time but I may schedule it in Dec just before the start of a new academic year. My speech therapy homework til then is to target accuracy of the c, k, g sounds. Accuracy of the other sounds (r and l) can wait as he’s only just turning 5.
We've got to where we are now by achieving small steps forward. But nowadays, it’s very hard to attain his co-operation in various activities, therapy based or otherwise. Please, please pray for wisdom and God’s healing to achieve this target. Thank you!
I prayed for a good session where he’d readily speak. In the past it was difficult to get him to talk during the session. I wanted him to talk freely the way he does with me at home. I wanted her to experience that so that she has a more accurate picture, so that she could give a more accurate assessment, and so that she would be able to write a more positive report should his future school require one.
Prayer answered! Thank you God! He did well at therapy. He didn’t speak as much as he does at home, but it’s a whole lot better than in past sessions. He spoke in short sentences and longer phrases. In the past it was mostly one word answers or short phrases. It was also much easier to elicit responses from him.
One of the games that we played was like a game of broken telephone. The therapist would whisper a sentence to my son while I turned away and had my ears closed. Then he was to tell me what she said. For most of the time, I understood him. Then it was reversed, where I whispered to him, and he repeats it to the therapist. Most of the time, she understood too! In all there were probably 6-8 sentences, and with roughly 90% accuracy in repeating what was whispered, I’m very happy and so was she.
She noted the following in terms of physical appearance: he’s more stable; his response time is faster; his core is stronger. In terms of speech: he doesn’t strain or exert energy to talk; there’s improvement in clarity. I attribute all that to the intensive Neurosuit therapy that he’s undergone – thanks Adnan and Fezia.
We didn’t get to discuss much cos my son needed 3 toilet breaks (one to pee, twice to poo) which took put some time. I did ask her opinion about VitalStim therapy and I’m unlikely to pursue that therapy. She’ll be attending Caroline Bowen’s workshop, so she’ll be sharing some of the things that she’ll learn which applies to my son’s case (I decided not to attend the workshop cos I don’t trust my current helper in caring for my son for a full day without me).
Next session will be in 3 months’ time but I may schedule it in Dec just before the start of a new academic year. My speech therapy homework til then is to target accuracy of the c, k, g sounds. Accuracy of the other sounds (r and l) can wait as he’s only just turning 5.
We've got to where we are now by achieving small steps forward. But nowadays, it’s very hard to attain his co-operation in various activities, therapy based or otherwise. Please, please pray for wisdom and God’s healing to achieve this target. Thank you!
Wednesday, October 6, 2010
Canadian helps disabled speak through music
I read this today on a blog that I follow http://bloom-parentingkidswithdisabilities.blogspot.com/ and just had to share it with you.
It's amazing! Imagine how beautiful the hospital hallways sound. Imagine the joy it'd bring to the parents! And the research being done to expand that technology into yes/no answers...can't wait for the results!
-----------------
MONTREAL, Canada — Children immured within their severely disabled bodies may soon be able to communicate thanks to a newly unveiled device that translates physiological signals into music.
Stefanie Blain studied for five years the interactions of children with severe disabilities and their parents, as part of her doctoral studies at Canada's largest children's rehabilitation hospital, Holland Bloorview, in Toronto.
"They can 'read' their children by observing minuscule movements of their lips, or changes in their breathing," she told a Technology, Entertainment, Design (TEDx) conference in Montreal.
By measuring those tiny physiological signals, Blain was able to show that Max, a 15-year-old adolescent who was seemingly in a vegetative state, became animated when he spotted his favorite toy.
Even completely paralyzed, the body continues to react by changes in body temperature and sweat levels, as well as heart and breathing rates, she explained.
Blain initially created a graphic translation of these physiological arousals.
"But my curves and 3D simulations didn't speak to anyone," she said with a smile. So, being a musician, she wrote algorithms to convert them into sounds," she said.
"Another child, whom we believed was always sleeping, started to emit a 'biological song' whenever clowns entered his room. It was the first time that his parents and hospital staff realized that he was conscious of the world around him," she said.
The software she created deciphers physiological signals and translates them into a range of tonalities, from soft low-pitched sounds when an individual is calm to high-pitched and more complicated tunes when they are thinking of pleasant things.
"Each 'song' is unique," she said.
"Imagine that when I arrived at the hospital, the hallways were quiet leading to the rooms of children who could neither move, nor speak, and not even make facial expressions," she said.
"Imagine these hallways now (full of music), imagine parents who can really get to know their children."
Currently, the research team lead by Tom Chau is seeking to expand the technology to make it possible for severely disabled children to answer yes or no when prompted, and use a computer.
Copyright © 2010 AFP. All rights reserved
It's amazing! Imagine how beautiful the hospital hallways sound. Imagine the joy it'd bring to the parents! And the research being done to expand that technology into yes/no answers...can't wait for the results!
-----------------
MONTREAL, Canada — Children immured within their severely disabled bodies may soon be able to communicate thanks to a newly unveiled device that translates physiological signals into music.
Stefanie Blain studied for five years the interactions of children with severe disabilities and their parents, as part of her doctoral studies at Canada's largest children's rehabilitation hospital, Holland Bloorview, in Toronto.
"They can 'read' their children by observing minuscule movements of their lips, or changes in their breathing," she told a Technology, Entertainment, Design (TEDx) conference in Montreal.
By measuring those tiny physiological signals, Blain was able to show that Max, a 15-year-old adolescent who was seemingly in a vegetative state, became animated when he spotted his favorite toy.
Even completely paralyzed, the body continues to react by changes in body temperature and sweat levels, as well as heart and breathing rates, she explained.
Blain initially created a graphic translation of these physiological arousals.
"But my curves and 3D simulations didn't speak to anyone," she said with a smile. So, being a musician, she wrote algorithms to convert them into sounds," she said.
"Another child, whom we believed was always sleeping, started to emit a 'biological song' whenever clowns entered his room. It was the first time that his parents and hospital staff realized that he was conscious of the world around him," she said.
The software she created deciphers physiological signals and translates them into a range of tonalities, from soft low-pitched sounds when an individual is calm to high-pitched and more complicated tunes when they are thinking of pleasant things.
"Each 'song' is unique," she said.
"Imagine that when I arrived at the hospital, the hallways were quiet leading to the rooms of children who could neither move, nor speak, and not even make facial expressions," she said.
"Imagine these hallways now (full of music), imagine parents who can really get to know their children."
Currently, the research team lead by Tom Chau is seeking to expand the technology to make it possible for severely disabled children to answer yes or no when prompted, and use a computer.
Copyright © 2010 AFP. All rights reserved
Friday, October 1, 2010
Copying it down
Attending kindergarten has given him practice in copying from the whiteboard unto his book. He’s come to the stage that he’s able to copy the day and date by himself. It’s only on the odd occasion that he misses out some letters, for e.g. Wednesday, which is a long word or when he’s in a hurry to pass up his work.
Those are familiar words to him and it’s copying just one word at a time. So far in kindergarten, he’s not had to copy more than one word at a time (e.g. a sentence or a few sentences). I suppose they’ll gradually build him up for it next year.
About a week ago, he decided to copy the Days of the Week chart I had stuck on his cupboard door. I didn’t initiate it. I merely gave him a blank piece of paper, with which I intended to use for a different activity.
He wasn’t seated in front of the cupboard. His table was at the side of it. So he had to keep getting up from his table, walk across his mattress, to the cupboard, and return to the table to write it down.
I thought he did fairly well - he had to store it in his head for a few seconds longer compared to if it were in front of him. I stayed with him only to see him write Monday, and left him to do the rest.
There were 7 words to copy and he missed out Wednesday initially. When I pointed it out to him, he inserted it in the right order, but misspelled.
The other misspellings were actually not so bad because the misspelled words still sounded phonetically close. Th-r-s-day sounds right tho it should be spelt Thursday. Sat-e-day sounds possible too if the “e” is the BM way of sounding out “e” as in “emak”. It makes me wonder if he’s not just using his sight to copy but also using his knowledge of phonics in the copying process.
He wanted to add the title just like I did for his chart. I now think it’s important to add a title to things I put up. Again there’s a misspelt word in the title: “Days” is written as “das” which is phonetically correct if the “a” is sounded out as the long vowel “a”.
Those are familiar words to him and it’s copying just one word at a time. So far in kindergarten, he’s not had to copy more than one word at a time (e.g. a sentence or a few sentences). I suppose they’ll gradually build him up for it next year.
About a week ago, he decided to copy the Days of the Week chart I had stuck on his cupboard door. I didn’t initiate it. I merely gave him a blank piece of paper, with which I intended to use for a different activity.
He wasn’t seated in front of the cupboard. His table was at the side of it. So he had to keep getting up from his table, walk across his mattress, to the cupboard, and return to the table to write it down.
I thought he did fairly well - he had to store it in his head for a few seconds longer compared to if it were in front of him. I stayed with him only to see him write Monday, and left him to do the rest.
The other misspellings were actually not so bad because the misspelled words still sounded phonetically close. Th-r-s-day sounds right tho it should be spelt Thursday. Sat-e-day sounds possible too if the “e” is the BM way of sounding out “e” as in “emak”. It makes me wonder if he’s not just using his sight to copy but also using his knowledge of phonics in the copying process.
He wanted to add the title just like I did for his chart. I now think it’s important to add a title to things I put up. Again there’s a misspelt word in the title: “Days” is written as “das” which is phonetically correct if the “a” is sounded out as the long vowel “a”.
Wednesday, September 29, 2010
Problem uploading images!
I cant seem to upload images onto blogger. My images are JPG files. I've compressed it to a tiny 33kB sized file but am still getting a message "Error, please try again" after it tries to upload. It started yesterday when I noticed blogger had changed the uploading application/window to something fancy.
I've searched for answers via the "Help" link but it's of no help! Read that some other users in the Help Forum are having same problem (since Aug!), but Blogger hasn't come up with response. I can upload it to Picasa then unto blogger but it's so time consuming that way (especially when Maxis broadband is so unstable).
Anyone else out there having the same problem?
I've searched for answers via the "Help" link but it's of no help! Read that some other users in the Help Forum are having same problem (since Aug!), but Blogger hasn't come up with response. I can upload it to Picasa then unto blogger but it's so time consuming that way (especially when Maxis broadband is so unstable).
Anyone else out there having the same problem?
Tuesday, September 28, 2010
I’m learning about Maths
Another mother had recommended a book she found useful in teaching maths to her (typically developing) son who’s currently in Year 3.
It is indeed a good book. It’s very easy to read and understand. Of the book’s 196 pages, I read the first 50 pages within an hour or so.
It’s not a workbook. It’s doesn’t give you lesson plans. It doesn’t contain a syllabus. It’s not a book chock full of ideas to teach maths creatively.
It’s written for the parent who “wishes to be an active participant in his or her child’s arithmetic studies”, hence the title “Arithmetic for Parents – A Book for Grownups about Children’s Mathematics”.
It’s written by Ron Aharoni, a maths professor who teaches in university. He “accepted his friend’s invitation to teach maths in elementary school as part of a project, and has since devoted much time to primary mathematics education”.
Here are some excerpts that I’d like to share:
“One of the insights I came by while teaching in elementary school is that elementary mathematics isn’t simple at all. It has depth and beauty.”
“Proper teaching of mathematics depends more on an understanding of the mathematical principles than on educational tricks. It requires familiarity with the way the fine mathematical layers lie one upon the other.”
“What have I learned? Much about teaching, about approaching children, about the way children think. I have learned about the importance of being systematic...I understood that concepts adults perceive as a whole are actually built of many small elements, one upon the other, and that you cannot skip any one of them. I learned...that explanations are usually futile in elementary school: Concepts must originate in the child through personal experience...A large part of what I learned wasn’t new facts, but something completely different: subtleties. It was like looking at a piece of cloth – from afar it seems smooth and uniform, but up close you discover that it is made of fine, interwoven threads. What I believed to be one piece turned out to consist of a delicate texture of ideas.”
“Education researchers use the term “mathematics anxiety”. There are no history anxiety or geography anxiety, but there is mathematics anxiety. Why only mathematics? The main reason lies in its layered structure: Mathematics anxiety arise when one stage is unheedingly skipped...many of the layers of mathematical knowledge are so elementary that they are often easy to miss. And when this happens, and an attempt is made to establish a new layer on top of the missing one, neither the teacher nor the student can discern the origin of the problem.”
Within a week of receiving the book, I had loaned it out to another mother who’s 12 year old child could do maths if it’s presented in numbers, but had difficulty with word problems. She found it useful too.
So if you are interested to purchase the book, (and I do highly recommend it) here are the details:
Title: Arithmetic for Parents – A Book for Grownups about Children’s Mathematics
Author: Ron Aharoni
Publisher: Sumizdat
ISBN-13: 978-0-9779852-5-8
ISBN-10: 0-9779852-5-8
It’s not carried by the major bookstore chain in Malaysia, but is easily bought through the publisher’s website: www.sumizdat.org.
It was my first time ever buying anything over the internet, so I was really anxious and paranoid! But I must say that their customer service (via email) was excellent – went out of the way to reassure me.
It is indeed a good book. It’s very easy to read and understand. Of the book’s 196 pages, I read the first 50 pages within an hour or so.
It’s not a workbook. It’s doesn’t give you lesson plans. It doesn’t contain a syllabus. It’s not a book chock full of ideas to teach maths creatively.
It’s written for the parent who “wishes to be an active participant in his or her child’s arithmetic studies”, hence the title “Arithmetic for Parents – A Book for Grownups about Children’s Mathematics”.
It’s written by Ron Aharoni, a maths professor who teaches in university. He “accepted his friend’s invitation to teach maths in elementary school as part of a project, and has since devoted much time to primary mathematics education”.
Here are some excerpts that I’d like to share:
“One of the insights I came by while teaching in elementary school is that elementary mathematics isn’t simple at all. It has depth and beauty.”
“Proper teaching of mathematics depends more on an understanding of the mathematical principles than on educational tricks. It requires familiarity with the way the fine mathematical layers lie one upon the other.”
“What have I learned? Much about teaching, about approaching children, about the way children think. I have learned about the importance of being systematic...I understood that concepts adults perceive as a whole are actually built of many small elements, one upon the other, and that you cannot skip any one of them. I learned...that explanations are usually futile in elementary school: Concepts must originate in the child through personal experience...A large part of what I learned wasn’t new facts, but something completely different: subtleties. It was like looking at a piece of cloth – from afar it seems smooth and uniform, but up close you discover that it is made of fine, interwoven threads. What I believed to be one piece turned out to consist of a delicate texture of ideas.”
“Education researchers use the term “mathematics anxiety”. There are no history anxiety or geography anxiety, but there is mathematics anxiety. Why only mathematics? The main reason lies in its layered structure: Mathematics anxiety arise when one stage is unheedingly skipped...many of the layers of mathematical knowledge are so elementary that they are often easy to miss. And when this happens, and an attempt is made to establish a new layer on top of the missing one, neither the teacher nor the student can discern the origin of the problem.”
Within a week of receiving the book, I had loaned it out to another mother who’s 12 year old child could do maths if it’s presented in numbers, but had difficulty with word problems. She found it useful too.
So if you are interested to purchase the book, (and I do highly recommend it) here are the details:
Title: Arithmetic for Parents – A Book for Grownups about Children’s Mathematics
Author: Ron Aharoni
Publisher: Sumizdat
ISBN-13: 978-0-9779852-5-8
ISBN-10: 0-9779852-5-8
It’s not carried by the major bookstore chain in Malaysia, but is easily bought through the publisher’s website: www.sumizdat.org.
It was my first time ever buying anything over the internet, so I was really anxious and paranoid! But I must say that their customer service (via email) was excellent – went out of the way to reassure me.
Monday, September 27, 2010
Slowing down
The past 6 weeks have seen both my son and I falling (mildly) ill... twice. That has forced me to slow down drastically.
He didn’t attend school for a few days. His physiotherapy was cut down and made easier when it resumed. He got to play with his cars, trains and trucks. We read for enjoyment, and not with the purpose of learning phonics. We lolled around on bed and he spoke whatever was on his mind.
I got to sleep more. I wasn’t in a state of anxiety, thinking of what I should be doing with him. I wasn’t going around keeping one eye on the time (for the most part anyway). I wasn’t stressed that he still wasn’t feeding himself, or that he still struggles with pulling up his pants, or that he still hates having his teeth brushed, or that he eats so little.
I had time to appreciate the gift of my son.
His personality is developing. He likes to tuck his teddy in. He likes to pretend to be the teacher. He has his favourite foods (steamed fish, roast duck, char siu, corn on the cob, pizza, pasta bake, tortilla wraps, pitta bread, sandwiches). He laughs when watching Mr Bean. Strangely, he likes maths shows (Numberjacks, Maths Mansion, Puzzle Maths, Numbers Count). He’s taken on the Malaysian way of talking with the “lah”, “ah” etc added on. He’ll tell me “I like you because you are nice to me.” He’ll hand teddy to me, asking me to take care of it, and when I pretended not to know how to, he showed me (he hugged it and kissed it). LOL
I had time to reflect.
I remember when he was just a few months old, I hung on to the words of hope offered by my best friend (who also has a son with special needs): It’ll get easier. Caring for him has indeed gotten a lot easier, slowly over time. It’s not easy, but it is getting easier. I’m no longer crippled with fear. He can be left alone in his room with toys for a short period of time, while I quickly fix a meal or have a shower. He sleeps through the night. He’s toilet trained. He can climb into his car seat by himself. He is able to eat mostly what we eat. I can go out with him alone – it’s so liberating – without needing my helper to tag along. He’s learning to dress himself. He’s learning to put on his shoes. He’s learning to drink without a straw from his tumbler. He seldom vomits. There is some semblance of family life.
I’m aware there’s less than 2 months to go before school closes for the year. I’m aware there’s about a year to go before he enters Year 1.
Right now though, time has slowed down. It’s not a project. He’s my son. And I love him to bits.
He didn’t attend school for a few days. His physiotherapy was cut down and made easier when it resumed. He got to play with his cars, trains and trucks. We read for enjoyment, and not with the purpose of learning phonics. We lolled around on bed and he spoke whatever was on his mind.
I got to sleep more. I wasn’t in a state of anxiety, thinking of what I should be doing with him. I wasn’t going around keeping one eye on the time (for the most part anyway). I wasn’t stressed that he still wasn’t feeding himself, or that he still struggles with pulling up his pants, or that he still hates having his teeth brushed, or that he eats so little.
I had time to appreciate the gift of my son.
His personality is developing. He likes to tuck his teddy in. He likes to pretend to be the teacher. He has his favourite foods (steamed fish, roast duck, char siu, corn on the cob, pizza, pasta bake, tortilla wraps, pitta bread, sandwiches). He laughs when watching Mr Bean. Strangely, he likes maths shows (Numberjacks, Maths Mansion, Puzzle Maths, Numbers Count). He’s taken on the Malaysian way of talking with the “lah”, “ah” etc added on. He’ll tell me “I like you because you are nice to me.” He’ll hand teddy to me, asking me to take care of it, and when I pretended not to know how to, he showed me (he hugged it and kissed it). LOL
I had time to reflect.
I remember when he was just a few months old, I hung on to the words of hope offered by my best friend (who also has a son with special needs): It’ll get easier. Caring for him has indeed gotten a lot easier, slowly over time. It’s not easy, but it is getting easier. I’m no longer crippled with fear. He can be left alone in his room with toys for a short period of time, while I quickly fix a meal or have a shower. He sleeps through the night. He’s toilet trained. He can climb into his car seat by himself. He is able to eat mostly what we eat. I can go out with him alone – it’s so liberating – without needing my helper to tag along. He’s learning to dress himself. He’s learning to put on his shoes. He’s learning to drink without a straw from his tumbler. He seldom vomits. There is some semblance of family life.
I’m aware there’s less than 2 months to go before school closes for the year. I’m aware there’s about a year to go before he enters Year 1.
Right now though, time has slowed down. It’s not a project. He’s my son. And I love him to bits.
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