Wednesday, June 29, 2011

Sick, sick, sick

My son and I seem to be taking turns in falling ill recently.

3 Sundays ago, he was down with fever and a cold and recovered sufficiently to attend the second round of assessment later that week.

2 Sundays ago, it was my turn to fall ill. I had stiff neck, body aches and fever. The aches gradually became more painful so much so that I couldnt stand up at night to walk over to check on my son. Blood test was done and it ruled out dengue and bacterial infection. So reckon it was a bad virus attack. I've recovered since.

Now, it's my son's turn to fall ill again. He had a fever last weekend and started coughing. He's now on anti-histamines (Zyrtec & Rhinatiol/Promethazine) and using the AeroChamber (with Ventolin) every 2 hours.

I was told off by his paediatrician yesterday for not being aggressive enough in treating his cough symptoms! Apparently I should have started him on Ventolin (using the AeroChamber) the moment he starts coughing. Sigh. He never told me that before. Anyway, Dr said his lungs are clear and that he's fighting off the virus himself. No sore throat.

I had thought that he told me to start on the anti-histamines the moment he starts coughing. And that usually works to arrest the coughing quite quickly. I think this time round, he had one too many consecutive nights of poor sleep and kicking off the blanket. So, it deteriorated too quickly.

Anyhow, I'm also taking him for nebuliser at the hospital twice a day now. It'll taper down as he gets better, as will the frequency of the Ventolin.

I've a minor operation scheduled (for myself) tomorrow. I'm a bit worried for myself and for my son. This will be the first time I'll be sleeping without my son. I'm hoping my husband will be able to care for him (especially now that he's sick). As I'm the stay at home mum, my husband tends to be rather hands off. But as I'll be hospitalised for just 2 days, 1 night, it isn't so bad.

Tuesday, June 28, 2011

New playgroup for special needs kids

The Parent Support Group that I'm in has recently set up a new playgroup, which will start next month.

It's focusing on special needs kids who aren't at the moment attending any other playgroup. The reason behind that is because they wish to reach out to more people, people who do not currently have access to early intervention and support.

They do not have paper qualification for early intervention nor claim to be early intervention specialists.

They do however, have experience with special needs kids as most of them are themselves parents of special needs kids. They do also genuinely have a love for and desire to help special needs kids.

One of the parent there is Montessori trained and used to own/run a kindergarten but stopped to care for her special child. I have found that a lot of Montessori methods is useful for special needs kids - their way of teaching one thing at a time; their sensorial approach; their catering to the speed/progress of the child; their fine motor activities help self care skill development etc.

At least one parent is required to attend the playgroup with the child. I think in that way, the parent can learn a lot of activities to be replicated at home for the benefit of the child. Also, it's a good opportunity for the parent to meet other parents of special needs kids as this journey can be quite lonely.

Further details of the playgroup are as follows:

Date : 6 July 2011 (Wednesday)

Time : 9.30 am – 11.30 pm
Venue : Level 4, Wisma FGA
11 Jalan Peria, Taman Goodwood,
Jalan Kuchai Lama, Off Jalan Kelang Lama,
58200 Kuala Lumpur
Play Group provides some affordable form of early intervention in basic education and living skills for special needs children, ages 4-6.

Activities include story-telling, music and movement, educational computer programs, art & craft, gross motor skills, individual skill building and group games.

Parents are required to attend with their children.

Wednesday, June 22, 2011

Cerebral palsy teen aims to be a lawyer - article from The Star

After last Friday's Parents Teachers Meeting at his kindergarten, my husband commented that if my son was as "above average" as what his teachers (and assessor at his soon-to-be-school) think, then perhaps he might even make it to top universities like Oxford, Cambridge and Harvard.

I honestly cant see that far. There are a lot more challenges that he will have to face. But I remember one of the feelings I had when I was told that he was accepted into school. I felt that we were given tickets which allowed us into the world of normal kids. I felt that I could dream and hope for my child.

A few days ago, I read the following article in The Star newspaper. Since revamping the paper, they've run a lot of inspiring stories, several involving people with physical disabilities. Perhaps it too might give hope to other parents of kids with cerebral palsy.


Cerebral palsy teen aims to be a lawyer


KOTA KINABALU: Teenager Mohd Amirul Asyraf Asri has cerebral palsy and cannot even hold a pen.
But the disability has not stopped him from excelling academically he is now studying matriculation in Labuan.

He was one of the three disabled students to receive the Shell Educational Excellence Awards here yesterday.
Against all odds: Mohd Amirul showing his Shell scholarship award to his father Mohd Asri and mother Halipah during the Shell Educational Excellence Awards 2011 in Kota Kinabalu Monday.

Thirty-four Sabah students were presented with the bursaries totalling some RM3.5mil.
Mohd Amirul is now doing his diploma in bio-physics at Kolej Matrikulasi Labuan but hopes to continue his education in law at UiTM after completing the diploma course.
The former Sekolah Menengah Kebangsaan (SMK) Madai, Kunak student uses a laptop for his studies and examinations as he is unable to write.
His schoolmates, said Mohd Amirul, were true friends as they helped him to get from class to class, and even fed him during meal times.
His father Mohd Asri Alian said the eldest of five children had consistently done well in school.
Mohd Amirul had scored 3As, 3Bs and 3Cs in the Sijil Pelajaran Malaysia (SPM) examination last year.
Mohd Asri and his wife Halipah Bachok said they had always encouraged their son to rise above his disability.
Shell Malaysia chairman Anuar Taib said the company was awarding 400 bursaries and 100 scholarships worth RM11mil nationwide this year.
Deputy Chief Minister Datuk Dr Yee Moh Chai handed out the scholarships on behalf of Chief Minister Datuk Musa Aman.

Wednesday, June 15, 2011

Second round of school assessment

As mentioned in a previous posting, he sat for an assessment last month. Two weeks ago, we were told to come in again, because the principal would like to see him, for an interview.

He had his second round of assessment today, except that I wasn't expecting him to be assessed again. After all, the lady who conveyed the message to me said it was an interview and not an assessment.

He had a high fever just 2 days ago. I've put him on paracetamol and anti-histamine, and used the aero chamber with the Ventolin puff when necessary. He still seemed chirpy on Monday morning which was good because I dont think I would have coped very well with a grouchy sick kid from Monday to today, immediately after 2 weeks of school holiday where I spent 24 hrs with him, plus when I'm sick too.

I'm down with a flu and feel awful. I woke at 4.30am this morning and couldn't fall asleep again. Nervous, no doubt. The bad headaches, stiff neck and shoulder pains are back together with a sore throat and random sharp shooting pains. Think I might head for a massage tomorrow (when he's back to school tomorrow)! But the early start to my day meant I had plenty of time to do my relaxation qi gong.

My son woke early, which meant there was enough time to get both ourselves ready with minimal stress. My husband came along this time which made a huge difference - moral support! I was nervous for sure, but a lot less so compared to his first assessment. I dont think my son felt my nervousness as I was trying very hard to think positive, and prayed, prayed, prayed.

We arrived early. I had a quick browse at the bookshop and spoke to the lady there about the school's shoes, socks, and types of exercise books they used. I was working on the assumption that my son would be accepted (that's being positive huh!) and began planning ahead.

We met the principal and briefly chatted about my son's areas of disability. Then he was whisked away for the assessment with another teacher. He was in safe hands, so we were asked to wait at the canteen.

It was break time and I began planning ahead again...I was surveying what the kids were eating, their type of lunch boxes, how they paid for food, the crowd level at the tables, the crowd level at the counter, whether the amount of time given to eat was sufficient for my son, were the kids supervised, how many teachers were supervising etc. You see, I was imagining how my son would cope in that situation, and what were the areas I'd need to work on to help him.

The school's break time is staggered. From Nursery to Year 12, they were staggered into 4 blocks such that their break times do not overlap. I did a lot of observing and that certainly took my mind off worrying how my son was doing in the assessment.

Finally, they came down to ask us to go back up with them to discuss the results. We talked. They talked. The principal finally said the words I so wanted to hear. He's been accepted! I almost teared up but no tears came.

But it came with a condition that I work closely with the school in helping support my son. No problem! Then we talked even more with the teacher, and finally left about 11.30am. There was so much talking that I dont think I registered half of what they were saying. Thankfully my husband accompanied us.

The past year or so have seen much effort by his therapist and myself on preparing my son for school, or "school readiness" as it's commonly termed.

So, I'm surprised at my own reaction, or lack of. I'm not jumping over the moon. I'm not shouting it from the roof tops. I expected to cry tears of joy but none came. I dont really know what I feel. Relieved, I suppose. It's very strange. Perhaps an anti-climax. Perhaps I'm too tired. I know I wanted to give a big, big, big hug to each of my friends & family who prayed alongside. I did give a big hug to his therapist (had a session in the afternoon).

I know that this is just the beginning of my long journey to help my son. I'm already tired. There's so much more to do. I'm now searching for an oral motor therapist, and a retained reflex inhibitor therapist. If you know of any in the Klang Valley, please do let me know. I can't find any!

Then there's seeing to his self care needs - he still cant cut up his food (they serve set meals, cost of which is inc in the fees), he still cant botton/unbutton, he still cant get in or out of a T-shirt, he still cant put on his socks, he still stuffs his mouth if he likes the food (risk of vomitting), etc.

I've to start him on swimming lessons in order for him to be water safe. I'm really really scared cos they have swimming lessons for Year 1 kids during school hours.

They place a great emphasis on developing his speech. They expect me to be very diligent in doing what his speech therapist asks, and what the school's learning support head asks. They expect progress. I most likely have to find a new speech therapist as his old one, who was very good, decided to homeschool her kids. They are spot on for emphasising progress in speech, but I'm worried how quickly they expect to see that progress. I think the progress in his speech is hampered right now by the lack of oral motor work...and there doesnt seem to be oral motor therapists locally!!! Perhaps I really do need to attend that 5 day oral motor seminar which I posted about. I booked a slot to see the therapist for an asssessment, but havent signed up for the seminar. I'll have to discuss with my husband because he'll have to take leave from work (boss makes it hard to take leave) to care for my son while I'm at the seminar.

But I feel better now that I've written it all down. I can breathe again. Sorry you had to bear with me while I got it all off my chest.

One thing that made this all possible was obviously God - God's grace, God's love, God's provision. Jehovah Jireh! With God, any thing is possible. Thank you to my "group of 7" who prayed and prayed!

Now strangely, I feel like I CAN celebrate! Jehovah Jireh, my Provider, His grace is sufficient for me.

Thursday, June 9, 2011

He can bake muffins...with my help

I read a long time ago that baking is a good activity for young kids. I never got round to baking with him, because he was not so capable when he was younger, and then I just forgot about it, amongst the many other things I want him to do.

So when his therapist suggested it about two or three months ago, I took it on. It was sometime near Teachers' Day so I suggested to my son that he bake muffins for his teacher. His first attempt at baking was to make Orange Poppy Seed Muffins and it was successful! We were so pleased that I forgot to take photos and gobbled up the remainder.

We used the instant mix muffins under the local brand, Nona. It just needs water, oil and eggs. Easy. Tasty! The manufacturer's website is

The second attempt was blueberry muffins which didnt taste as good (different recipe - Betty Crocker label, I think). It required water only, and not oil or eggs.

Today, we baked chocolate muffins. It was also using the pre-mixed Nona recipe. Tasty too.

He enjoys baking and was very pleased to give some of them to his therapist.

I love that he's enjoying more and more activities that normal kids do.

Wednesday, June 8, 2011

Videos of him driving

One of the fun activities he did during the school holidays was to drive a car!

He's nuts about cars, so when we spotted this place in a neighbourhood shopping mall, he just had to try it out.

The cars come in various designs like a jeep, motorbike, cartoonish cars etc.

The car is battery operated, with buttons that either play music, or turns on the left/right indicator, or sounds a horn. He's in full control of the car, able to steer it anywhere he wants, able to move it forward or in reverse with the flick of a switch, and accelerate the car with a foot pedal.

There's a seat belt but doesnt look like it's of any use. It moves much slower than a bumper car, so it's quite safe for him.

He doesnt need much strength to turn the steering wheel, so he could control it himself (unlike the bumper car he rode in at Genting).

Now that he can drive, I'll teach him to run errands for me! LOL

Tuesday, June 7, 2011

Healthy hearty breakfast - experiments!

Part of preparing him for school includes introducing him to eating solids for breakfast. Most of his life, he's had liquids for breakfast - mainly milk or smooth baby cereals.

This school holidays, I started introducing solids for breakfast. It requires quite a bit of experimenting and so I chose the school holidays to start. It's too stressful to introduce it on school days as we're already so rushed for time.

It's been hard getting him to eat, and not just drink his breakfast. In the first place, he takes a long time to drink his milk. Secondly, he tends to gag when he has solids for breakfast. I'm not sure if it's because it's too early in the morning or if he's not yet used to chewing at breakfast.

I'm not a good cook and not a morning person. So, it was most helpful that his therapist suggested two healthy, hearty recipes. I asked a few friends what their kids had for breakfast. Two mums said it was just milk as it was too early (kids have no appetite), but one mum packs home cooked snacks for her kids' morning snack (she wakes at 5.45am). Another said cereals or bread.

So far, I've only come up with these options for a breakfast that's filling and healthy. I'm trying to achieve some mix of complex carbohydrates, grains, protein, milk, veg, with minimal processed ingredients and minimal preparation time. It's not easy to achieve to be honest.

Rice Porridge - to provide variety, I'd have to change the protein element (e.g. chicken, pork, fish) and veg (carrot, french bean, spinach).

I tried using brown rice instead of my usual basmathi rice, but it turned out too gooey and gunky. I might have to experiment with different quantities of rice to water ratio and/or cooking times. I use a slow cooker and let it cook overnight because I'm not a morning person!

Grains - this was the recipe from his therapist, which is a bit like a sweet Chinese dessert. Barley, green mung beans, gingko nuts, dried fruits for sweetness and fibre, gets cooked in a slow cooker overnight on low heat.

I tried it with brown rice as the main grain with apples and almonds as suggested by his therapist, but turned out gunky. I might experiment with different proportions of ingredients to water. I'll also try out nutrition dense grains like millet and quinoa but have no idea how it'll turn out. I do know that I cant give him almonds and gingko nuts as he gags and vomits on it, after a few spoonfuls, even though it's soft.

Soft boiled eggs - this is the only one that has been fail safe (where he eats it all up). But I cant give it too often or he'll grow bored of it. I've also not found the right timing to boil the eggs and sometimes forget to bring it out from the fridge the night before (to let it warm up to room temperature).

I serve it without soya sauce or salt. He takes about one and a half Grade B eggs, or about one Grade A egg. I've not served it with toast, because it already takes some time for him to finish it.

I am concerned about salmonella in under cooked eggs, so I'm going against my instincts (I'd previously written about it in my blog) in serving it. I read that soft boiled eggs is an Asian thing!

Omelletes - I might reserve that for weekends as it'll require a bit more time in preparing it and because he has gagged and vomitted on it on different occassions.

Cereals from a box - I've never given him cereals targetted at kids like Honey Stars or Koko Krunch as it's just too loaded with sugar (and he'd not like the gooey texture after it's been soaked in milk). So far, the only ones I've given him which he likes are Nestle's Cheerios (not sugar coated), and Post's Honey Bunches of Oats.

Recipe book
Tonight, I came across an article in the Star newspaper (it was probably Sunday's paper & yes, I read whatever news I can even if it's stale news because I dont have time) that mentioned a new recipe book by the Nutrition Society of Malaysia, targetted at babies to pre-schoolers. I've had a quick scroll through it and it sure looks tempting! It's divided into age groups, and has breakfast recipes.

I have surfed the web to find breakfast recipes previously but it's too time consuming - some contain simple carbohydrates (e.g. pancakes), or ingredients not easily available locally, or are not age appropriate.

So when I discovered this gem tonight, I felt relieved. The book is available for free in soft copy format at :'s%20Choice%20Cbook_lr.pdf

Suggestions please
What does your child have for breakfast on school days? What time saving tips do you use when preparing breakfast?

Monday, June 6, 2011

His 3 wheel scooter and imaginary phone conversations

After about 6 months of contemplating, I finally bought him a three-wheel scooter. He's been happily riding it round and round the house.

It's taken me that long because I was keeping an eye out for cheaper versions of it at hypermarkets, and also because we were too busy to make a trip to the shop together. I needed to go together with him because I need to check if the height and the width of the foot rest were suitable for him.

When I finally saw it advertised at Tesco's, I couldn't find it on the shelves. So more waiting, and not having the time to get to the shop.

Now that it's the school holidays, we're taking things easy and have been heading to the malls rather often. There is currently a slight discount on it at Toys R Us, so I bought it.

I was thinking of a scooter because I wanted him to work on his balance, but I noticed that it's been good for more than that. He gets a good work out on various muscles too - his core mucles, his arms, his legs. His reflexes has to be quick. Co-ordination is required of both legs and arms. He has to learn to push down on his legs (he still tip toes sometimes).

Aside from the physical benefits, he's using his imagination too! He has kept a few small containers (he scoured my box of fine motor activity for it) in the little bag strapped to the handle bars. Once in a while, he'll stop the scooter, pick up a small metal container, place it to his ears and pretend it's a mobile phone! It's so amusing to see him at it!

His conversations go something like this:

"Hello?...Yes... Hi so and so (it's sometimes Ah Kong, Ah Ma, my sister, my brother, his friend, his cousins)...hmmm....ah-huh....mmm...yeah...ahhh...yup...yup...yup...ok, bye"

Sometimes he hands the phone to me and tells me the person on the other side wants to talk to me. So I humour him and continue the conversation, making it as real as possible, using words rather than just his uhhms and yups. So I ask if the person has had lunch/dinner, how's the person doing, are they going anywhere this school holidays, when are they coming to visit etc. By doing so, I hope it builds his imagination, social skills, and speech.

Btw, the scooter is available at Toys R Us, for RM89.95 after RM10 off (other models sell for up to RM250). The height of the handle bar is adjustable. The base of the foot rest lights up. I've not had him test it on grass or other outdoor terrain, but I've no problems with the tyre grip on indoor tiled floors. Only gripe with it is that the assembly instructions omitted mention of two small important parts (white tubes to be inserted to the back wheel's axle) so I suggest that you have the staff assemble it for you instead of doing it yourself (as I learnt the hard way).

Sunday, June 5, 2011

A swimmingly fun Sunday

A friend invited us to swim with her girls at the club this morning. The weather was dreary when we woke up and started to drizzle when we left the house. By the time I found my way around the club's complex, it was much heavier. My son looked disappointed when I told him we can't swim and were to go home. So, luckily we stayed on to play with the girls because the rain soon stopped and everyone had a great time!

He was initially scared to enter the baby pool but was willing to when I said that I'd accompany him.  Thankfully, he likes playing with the girls, and followed the older girl who was very quick and eager to get into the pool.

Surprisingly, he managed quite well with the ring shaped float (thanks Elly!) in the big pool. I did of course have my hands right by his side because he's not yet water safe. He enjoyed kicking and splashing and using the water shooter.

At some points, I had to help him bring his lower body horizontally behind him, because he tends to move into a curved C position with his legs in front of him. This was his first time with a float and with friends, so I didnt want to correct him too often (no fun if it's turned it into a therapy session). But it was definitely a really good work out for him because he was very hungry at lunch time!

Thanks for a great time Elly!

Thursday, June 2, 2011

Single-mum initiates school for disabled children

About 2 weeks ago I read an article in The Star newspaper of the opening of a new center for special needs children (and yes, I now have time to read the papers, not daily, but often enough). My thoughts when I read it, was that it was really good that there are more centers catering for special needs kids because there just isn't enough support here compared to developed countries like UK, and US.

What I didnt know then was that there was a very inspiring story behind the setting up of that centre. A week ago, a good friend emailed me a link about one of the founders and how the centre came to be. It's inspiring because despite the huge challenges faced in parenting a special needs child, she was also able to help other special needs kids, and to further add to her challenges, her husband left her. Reading her story brought tears to my eyes.

See below for the story of the single-mum who set up the school. The 2nd story after that is the article I had first read in The Star, of the opening of the center.

Single-mum initiates school for disabled children
By Yvonne Lim

Single-mum Christine Wong, who is parent to a child with a disability, turned her adversity into something good not just for herself but for others as well. With the help of other parents of disabled children, the piano teacher set up the Special Children’s Society of Ampang (SCSOA), a school for disabled children.

SCSOA has its genesis in 1996 when Wong, alone and with little cash to spare for seven-year-old Amanda’s costly therapy sessions, teamed up with two mothers whose children also had Down Syndrome to start a "tuition class" for their children.

They held the classes in their homes in rotation but the arrangement did not last because the children became very distracted by the toys in the homes.

Then one day, a parent of one of her piano class students suggested to Wong to start a playgroup for disabled children and charge a small fee for working parents to send their children there while they work. The parent, Maria Chow, even volunteered to run the class for a while as she used to be a teacher.

Word got around and more parents with special needs children began bringing their kids to the class. Three years later, with Wong at the helm, they formed SCSOA with 20 disabled children in a rented double-storey terrace house with borrowed furniture. The next year, SCSOA was properly registered with the Welfare Department as a special-needs society with 28 children. Today, SCSOA is located in a cheery, brightly-painted bungalow, which the society owns.

No longer a "tuition class", it has become a school with 12 committee members, each one a parent with a disabled child; 60 children; 12 teachers; and an unceasing flow of volunteers. Each child is charged a small fee of RM400 a month upon admission to the school. However, the fee is waived for orphans or needy children whose parents cannot afford it. SCSOA relies on donations and sponsorship to meet the financial gap.

Today, some of SCSOA students − nurtured and showered with love through the years at the school − are working as packers under Carrefour’s community outreach project, Carrefour Cares.SCSOA partners with HELP University College, Universiti Tunku Abdul Rahman and Masterskill University who regularly send students to volunteer at the school over a period of one and a half months to three months under their practical training programmes. Wong says SCSOA teachers also benefit greatly from these visits as they learn from the students’ lecturers who regularly turn up to check on their students.

Although 22 years have passed, she clearly remembers the day Amanda was born and the numbing shock she felt when told by the doctor of her daughter’s severe disability. Looking at her success, one would say that Wong has made lemonade out of the lemons life has thrown at her. But it has never been easy. “It never is, for parents with special needs children, especially if you are a single parent,” says the gentle-mannered Wong.

“She was born on a Wednesday,” she recalls. “After delivery, my mother and my husband asked why she wasn’t in the cot like the other babies. The nurses said they were keeping her for observation and I got a little worried.

“The next morning, I was alone in my room when the doctor came and flatly said, ‘Good morning. Your child is mentally retarded’. He explained Amanda’s condition, but I didn’t hear a word. My head was spinning; I was in such a shock. He didn’t even bother to wait for my family to come in first to help me bear the news.”

As a toddler, Amanda needed "24-hour surveillance" as she was a hyperactive child, always darting and running under the racks at clothing stores, Wong says.

When she turned seven, Wong and her husband had another child, Jonathan, who was born normal. It was a tough time trying to get Amanda to school as she was having difficulty accepting a baby brother in the family.

“By that time there was no more early intervention for Amanda. So I took her to a government (public) school where she underwent an assessment to determine if she could attend the school.

“During the assessment, Amanda had to stack up some blocks but before she could even finish, the assessor took away the blocks and gave her another puzzle to solve. That upset Amanda who threw a block at the assessor.

“The assessor was angry and told me, ‘If your child cannot behave, she won’t be accepted. Our children (at the school) must be well behaved, must sit down quietly, cannot run around and must be toilet trained’.

“I thought this was very unfair. Thousands of children go into Std 1 every year. When they reach the age of seven, they have the right to go to school,” Wong says.

After that, it was rejection after rejection from all the public schools for Amanda. The situation became even bleaker when Wong’s husband, unable to take the strain and humiliation of having a disabled child, left the family. Wong was now alone.

Without the additional financial support, she could not afford to pay for Amanda’s private therapy sessions on her income as a piano teacher. The rough road she had been travelling on had become a very steep hill.

“I had to struggle alone, running my home, raising my children, running the classes for the disabled children and teaching piano to make ends meet,” Wong recalls. “It’s much easier now that Jonathan is bigger as he can take the bus to school by himself."

Apart from helping the children develop, Wong and her committee members try to help and counsel the parents of the children at her school, some of whom are depressed and have lost hope.

“I’ve been there. I’ve walked that path,” says Wong. “It is very frustrating, you have no where to go, you don’t know how to seek help. That’s why we try our best to support the parents as well as the children.”

Wong is thankful for her family members, whom she says are her “pillars of strength.” “My mother has been my right hand throughout, giving me support while my father was pretty much Jonathan’s father until he passed away in 2008.”

Today, Jonathan is a strapping, well-mannered, athletic and bright Form 3 student. He also plays the violin and piano excellently.

“It has been a very tough road, but this kind of toughness is good because it strengthens you and you can help others who are walking the same road,” she says.


The Star
Monday May 16, 2011

Selangor ruler opens centre for special kids


THE Special Children Society of Ampang (SCSOA) Centre was officially opened by the Sultan of Selangor, Sultan Sharafuddin Idris Shah recently.

SCSOA is a non-profit charitable organisation providing a centre for children and adolescents with various disabilities, helping them to maximise their potential and achieve independence.

There are 60 children at the centre from the age of three to 30 years. Their disabilities range from Down Syndrome, Autism, Cerebal Palsy, Global Delay, Prader Willi Syndrome, Epilepsy and slow learners.

The centre aims to provide a holistic programme and training, not only for children but their parents and families as well.

They encourage participation from local communities by volunteering time and resources, thus allowing the children to integrate into society.

During the event, Sultan Sharafuddin was taken on a tour of the centre. He was also presented with a special artwork made by one of the children as well as treated to performances by the children.

Also present at the opening were SCSOA patron Tengku Puteri Puan Sri Nor Zehan Sultan Salahuddin Abdul Aziz Shah, Tengku Panglima Perlis Tan Sri Syed Anuar Jamalullail Tuanku Syed Putra Jamalulail, Ambassador of Cambodia Princess Royal Norodom Arunrasmy and Ampang Jaya Municipal Council (MPAJ) president Datuk Mohammad Yacob.

Meanwhile, the Ronald McDonald House Charities Malaysia (RMCH Malaysia) contributed RM257,000 to the centre’s new premises.

The money was raised from the annual RMCH-Tropicana Charity Golf Championship in 2005 to help start the ball rolling for the centre’s effort to get a new building.

A total of RM80,000 out of the sum raised was channelled to establish the 10th Ronald McDonald Sensory Room in Malaysia.

The facility provides a full range of sensory stimulation using ‘Snoezelen’, a multi-sensory stimulating system.

SCSOA president Christine Wong said the opening marked a major milestone of achieving their dream of owning their own home after 12 years.

She added that they started in 1999 with three parents and children with toys and books borrowed from Malaysian Care’s library.

“We want a place where the handicapped and able-bodied can integrate and live on equal terms.

“We may not be fully equipped with the state of the art facilities but we are trying to get there,” she said.

Wong also thanked all their sponsors for their encouragement and support over the years.

The centre is funded by parents contributions, public donations and fund raising activities.

To contribute to the centre, call 03-4256 8719 or e-mail or log on to SCSOA is located at No 386, Jalan 3, Taman Ampang Utama, Ampang, Selangor.

Wednesday, June 1, 2011

School holidays are here!

Two weeks of school holidays! No plans to go off anywhere as it's just too much of a hassle (difficult to find right sleeping temperature for my son) and we'd probably be jostling with the crowds for meals and facilities anyway.

We've been having our own "holiday" right here. Our formula: Get a break from the routine + do some fun things that are not therapy related + explore new places + revisit our old haunts + eat out often = a simple holiday where we can come back to the comfort of our own beds.

Friday, 27 May 2011

We started our holidays on Friday, after school. We had lunch at home and went to watch Kung Fu Panda 2. He was laughing at various points (he enjoys slapstick humour) but was also restless about half way through. I think he enjoyed Kung Fu Panda 2, his second movie at the cinema, more than Rio as it has more action and is funnier.

We bumped into my friend who brought her girls to watch the same show, so we had frozen yougurt after the movie.

I've started introducing him to cold food like frozen yougurt and cold fizzy drinks (100 plus). He's slowly able to eat a little more frozen yougurt each time, but barely able to finish more than 10% of a small portion. He doesnt really fancy ice creams, frozen yougurt, cold fizzy drinks, which is healthy I guess, but I do want him to be able to take just a little bit of it as a oral sensory activity.

While we were enjoying the yougurt, it was wonderful to see and hear him casually answer my friend who was asking him questions like whether he went to kindergarten that day, the name of his kindergarten, and if it was far away. I was seated in between them, and my friend could understand all that he said! He usually requires me to prompt him to answer adults, so I was really pleased to witness that. Unfortunately, I whispered to my friend how surprised I was to see what just happened and he then became self conscious and didn't want to answer further. I'll keep such comments to myself next time!

As she had some time to spare before heading off, the kids played in front of Toys R Us while I refreshed myself on what it was like to talk to an adult on non therapy matters! He wanted to engage the girls in play by following what they were doing but wasnt able to physically climb up to the platform to then slide down. He did have fun though, exploring the Step 2 little cubby house, the Thomas the Tank Engine ride, observing the antics of the girls, played chasing with the younger girl etc. He indicated he would like to play with them again this school holidays. I'll try to arrange an outing to the Bird Park or something, with the girls.

Saturday, 28 May 2011

I had some errands to run and since my husband was off on his own holiday and he didnt have music class this time, I brought him along. We had an early lunch (usual for a Saturday) and then headed for his maths class. He's doing well in maths class but does require almost daily coaching to help reinforce the lesson. The teachers there love him cos he sits to do the worksheets, participates in the maths games, is obedient and is usually able to do the sums with just a little teaching. That's opposed to some other kids in other classes which I've observed to be very vocal, or find it a bit hard to focus on the worksheet.

We usually then have a snack (thosai, roti telur) at the mamak because lunch was early. It's also because I want to expose him to different foods in terms of not just the taste, and texture, but also the way to use cutlery to eat it (e.g. tearing up the thosai, dipping into the dhall).

We then headed straight for my university alumni association's AGM. It's a small, quick and informal affair so it was fine with the rest of them that I brought my son along. I had beforehand loaded up the bagpack with my own maths worksheet, blank paper, Crayola markers, pencil case, and toy cars. He was so well behaved that a few of them complimented him on it. A kind elderly gentleman tried to engage with him but I think he didnt respond much except for nodding his head or answering his age. Unfortunately, he's still very shy especially on meeting an adult for the first time.

For the rest of the days so far, we've been keeping busy. We start the day with some maths, spelling, phonics, handwriting practice, fine motor practice after breakfast. We then head off to the park (Titiwangsa seems to be his favourite nowadays) for pedalling and a horse carriage ride. We sometimes have lunch out, and do some errands at the shops/malls. He gets his physical activity in the afternoons through walking, pushing the shopping cart, and learning to use his new 3 wheel scooter at home.

Tomorrow, we'll be visiting another international school that's nearby. We've not as yet received an acceptance letter from the school that assessed him, so I was a bit nervous and a few weeks ago, had made an appointment to see this school that's nearby. We're unlikely to apply for admission there (fees very high, school population huge) so I guess it's just to see what it's like for comparison's sake. This school issue does bother me but I keep busy and focus on God to avoid being consumed by worry.