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

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.

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!

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

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/

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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 : )

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.

---------
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.

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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."

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.

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.

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.
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.

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!

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!

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!

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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”.