Saturday, February 27, 2010

A full day (but not stressed) - 27 Feb 2010

It's Friday but it's a public holiday, so no school. Hooray! Ever since he started schooling, I once again appreciate public holidays and school holidays. : )

It was a very early start for me. Woke at 3am, with a very alert mind, so I went through emails and read a blog of an American teenager who flew all the way from US to India for stem cell treatment. Her blog's at: I found it so interesting that by the time I was ready for bed again, it was almost 6am!

Music class was on today, during which the teacher shared a lot on the approach he takes and how that can also be applied to teaching other subjects. My son was moving around a lot during class, running here and there, or pushing the stools around, or going behind the curtains. It's getting harder to get his attention focused on a subject matter that you want him to learn. I am concerned he cant take formal teaching the way local schools conduct it, presuming it's not changed for 20+ years (ie, sat at the desk most of the day, no talking, book based, spoon feeding from teacher, dont ask questions)

At class there was an activity where each student stood in front of the class to sing Twinkle Twinkle (note based version). My son needed encouragement (he lacks confidence when it comes to speech due to his dysarthria) so A was asked to sing with him. There was one part somewhere in the middle of the song where he did sing a few notes, which made me happy. After that, teacher taught a variation to that song, then had the boys sing it one by one. I know my son found it hard to follow while some of the other students seemed a bit unsure.

When he got home, my aunt asked him how was music class. He answered "it was so hard". At least that's what I heard. My aunt heard it as "it was so hot". Although I sought clarification from him, it was still not very clear but it still sounded like "it was so hard". I'm a bit concerned that he might be begining to display some characteristics similar to A.

After a bit of tidying up, we headed off for a lunch appointment with my aunt. Usually he eats well at the beef ball noodle place but not today. He was gagging from very early on and ate very very little (just 2-3 tablespoonfuls).

More tidying up when we got home and reorganising before my helper leaves. By the time it was 3pm, I was more than ready to join my son in his afternoon nap. It was a long rest until 4pm when my husband's friends dropped by for a CNY visit. While my son played alongside the 2yr old girl, he did on occassion say a few words to her, like "not there, there" (pointing to the correct place to place the puzzle piece). It was not a full sentence, and not a conversation (I think the girl was shy and a mandarin speaker) but it's a tiny step forward in talking to strangers.

Squeezed in time for a short prayer with my aunt and we were off for an early dinner before sending her off to the airport. At dinner, he again had difficulty eating. He would usually have had steamed fish/chicken/duck and an egg dish but he was gagging and vomitted on the first few spoonfuls. Sigh. It doesnt look good. He might be coming down with something....again.

I told him yesterday that aunty was flying back to Australia. His response surprised me, in a most pleasant way. He said "I like aunty Jenny. I'm going to miss her." How normal and how sweet is that?! He indeed had developed a good bond with his grand-aunt.

The highlight of the day for him was the airport. We happened to have wandered to the far end of the airport when he spotted KFC from a distance. "KFC! KFC! I want to eat KFC! Mmmmm....yum yum yum" he said. Oh my goodness! That was a first! And that would have been such a normal reaction for a normal kid. Wonderful! It's one of the few little things that show he's growing up. But I have some reservations too...I've held back as much as possible from introducing him to fast food for nutritional reasons. Since he ate so little throughout the day, we bought him some. He was very happy. But he ended up eating only a few bites. Sigh.

We discovered the Viewing Area and headed there cos based on our recent CNY trip, I knew he'd love it. He was so excited and said a lot of words. "Van! Van! Van! Truck! Truck! What's that? It's a buggy! What's that? It's an aerotrain! Oooo! Oooo! See! See! Ambulance! Perodua! Perodua! Two Perodua's! What's that at the back of the buggy?" Well, you get the idea. I loved to see him so happy and to hear the words just flowing from him. I was pointing out various things to him (it was dark so not much could be seen). After a while, I sat back and just enjoyed him.

He fell asleep on the ride back home. May he have pleasant dreams of planes, vans, trucks, buggies, catering vans, fuel trucks, aerotrains and all things he loves.

Thursday, February 25, 2010

Article on helping kids with behaviour problems in school

I read this on a few days ago. It gave me a different perspective on how to help him. I may not agree with everything written in there, but I'll pick and choose those I think I can apply.
What to do at home if your child is having behavior problems at school

by Ann Bartz

While children can display a wide range of behavior problems in school, from disruptive talking in the classroom to fighting and name-calling on the playground, the reasons for bad behavior are usually simple. "If a child is acting out a lot in school, my assumption is either that he's having strong feelings and needs a hand with getting those feelings out, or that something in school is really not working for him," says Alison Ehara-Brown, a licensed clinical social worker and school consultant in Berkeley, Calif. As a parent, you can try to change the situation in school so your child has a better time there. You can also help your child at home, by understanding how his feelings are getting in his way and giving him the means to express them.

"Children carry little packages of bad feelings that shut their thinking down if something triggers those feelings," says Patty Wipfler, a parent trainer and founder of the Parents Leadership Institute in Palo Alto, Calif. "Sometimes it's mathematics that does it; sometimes it's other children looking happy and relaxed when he doesn't feel that way." When a child's thinking shuts down, he may do something inappropriate because his ability to think before he acts is temporarily gone.

How to help your child at home

Don't punish your child.
Children aren't to blame for having bad feelings, says Wipfler. "It's not something they asked for. Your child isn't bad, and you're not bad for having a child with a behavior problem; these things just happen." Punishment for bad behavior will only make your child feel terrible about himself and prolong the difficulty by further shutting down his thinking.

Think about what's going on in your child's life.
Is he dealing with a big, one-time event, like a divorce or a death in the family, or smaller stressors over the long term, like teasing from an older sibling or pressure from a critical parent? Criticism can sap a child's positive feelings about himself; teasing can leave him looking for someone smaller or younger to take it out on. If your whole family is weathering a trauma, your child may be trying to handle strong feelings on his own without adding to your burden. You may never know exactly what's at the root of his difficulty with school, but you don't need to know in order to help him.

Try talking.
Your child may be able to tell you straight out what's bothering him, or you may have to set up certain conditions first. Children talk to adults when they feel safe, loved, and close. You can give your child that sense of contact either by playing with him vigorously and generously, or by listening to him without judgment or interruption.

Your child may also be more willing to open up if you ask him a positive question first. Someday when you're lying in the grass at the park, or out for a walk, or riding in the car without being in a hurry, ask in a relaxed tone, "If you could make school any way you wanted, what would it be like?" or "If you could make recess perfect, how would you change it?" You'll hear about what's hard at school, but you'll have bypassed the hopeless feelings that can make children reluctant to talk.

Let your child fall apart.
Children keep a lot inside but are always looking for ways to get their feelings out. You can help, says Wipfler, by being ready for "a tantrum, or a rage, or an insistence that something be done in a very particular way or his world will crash: 'You have to put butter on my mashed potatoes — it can't be margarine' or 'I will not turn off the TV.' Children will get very particular about a small thing because they have a little volcano of feelings inside that has nothing to do with what they're getting upset about. But it's the only way they know to address what they feel."

This won't be easy for you as a parent. You may be every bit as cranky as your child at the moment he picks to fall apart, or you may be under a lot of pressure to get something done. But your child will benefit tremendously if you can go down on one knee, put an arm around him, and listen while he cries as long as he needs to. Your child may say things that are difficult to hear — criticism of you, perhaps, or revelations of difficulties you didn't know he was having. But if he can cry all the way through these feelings, using you as a target, your child will feel heard and understood and will be able to think better in situations that might otherwise throw him. The day after a big emotional release, his behavior in school (and with his friends and with you) will most likely be profoundly better.

Wipfler tells a story of one parent who divorced the father of her two girls and married a new man. One of the daughters was furious about these developments. She was almost unable to do any of the assignments in her 3rd grade class, and at home she brought up the same bad feelings over and over. "Once she hid in the back of a closet and was crying and trembling and perspiring," says Wipfler. "Her mom stayed out of kicking distance but kept sticking her hand in toward her child and saying, 'I really love you, and I'm sorry it's been hard.' Her daughter was pushing at her hand and yelling and screaming — she had a huge cry." Finally she decided she was finished and asked for some orange juice. Then she wanted a bath, and her mother filled the tub for her. Five minutes later, the mother heard her daughter singing, "I love my mommy, and I love Steve, I love my life and the flowers everywhere." Her grades soon went from failing to A-minuses, and her distaste for school evaporated. Her mother, who had been afraid that her daughter would have to struggle with learning issues for the rest of her life, was astounded: In six months of several other outbursts and intense cries the girl had turned it all around. "If a child has an ongoing struggle," says Wipfler, "it may take listening many times, but you can change a child's whole life in this way."

Stay close to your child.
You can always help your child have a better day at school if you take time for closeness. Get up a bit earlier to carve out some relaxed time with your child as the day begins; a little bit of snuggling or playful cuddling in the morning can set him up for a better day. He'll go to school feeling more connected to you, and a little sturdier when he encounters a trigger that usually sets him off.

Play with your child.
Set up playtimes with your child so he can get some of the attention he's seeking by misbehaving at school; you may also get a better sense of what's on his mind. In his book Building Healthy Minds, Stanley Greenspan, a child psychiatrist and clinical professor of psychiatry and pediatrics at George Washington Medical School, advocates "floor time," or play, as a way to discover what's bothering a child. "When a child is misbehaving, pretend play can sometimes help reveal what's on his mind, why he's so angry and provocative."

Hils Learning - a centre for kids with learning difficulties

On my return flight last week, I came across an interesting article in the in-flight magazine. It was about a very experienced educationist who set up a learning centre (also in Mont Kiara) to help kids with various learning difficulties.

I've read her website. There were pretty good testimonials from parents. There were also various accreditations listed. Overall, looks impressive. Thought I'd share this information with my readers cos locally, it's hard to come across good support systems for kids with learning difficulties (especially those other than the "common" ones like autism and Downs).

The centre is Hils Learning. Their website address is:

The following was copied from her site:
Hils Learning is a welcoming friendly centre where parents and caregivers can gain access to information, where the individual is the focus and where help and support are generously supplied.

Many people encounter difficulty because of their individual learning style. At Hils Learning our goal is to help individuals, corporations, parents and educators work with different learners and appreciate how social and cognitive differences are an integral part of work, academic life and social experience.

Clients come to us for assistance with:
- Dyslexia
- Dyscalculia
- Evaluation
- Individual Learning Support
- First time English language learners
- Home Schooling guidance
- Workshop Training for Teachers and Parents
- Pre entry preparation and choices for education in Kuala Lumpur
- Aspergers Syndrome

After school support and on going maintenance programmes are offered to ensure school success.  

Tuesday, February 23, 2010

His latest "toy" - the phone

He's discovered a new "toy". He's been playing with our house phone over the past 2-3 days.

He was with my helper when for the first time, out of his own initiative, he picked up the receiver, said "Hello, I'm (he said his name). Who are you? asdkfjaksdfoieruaweroaiuad (babble), Bye bye." and hung up!

I know that's no big deal for a normal kid. But to me, it's one of the many recent tiny developments that show that he's growing up.

There have been many small incidents like this example, but because I was busy, I didnt record it down and now I've forgotten them. I usually go to speech therapy, ready to give feedback with specific examples of his speech development but I wont be able to next round.

Today, I helped him to dial Papa's number. That was also with the motive of helping him to memorise Papa's number in case of emergencies. Papa's number is a lot easier to memorise compared to mine and since I'm with him most of the time, it should be Papa's number that he memorises.

Luckily, Papa wasnt in a meeting and didnt get angry for being disturbed in the office! Papa was very happy that he could hear what was said (ie. his voice was loud enough even though it sounded soft to me). Papa also understood what was said, but that was because Papa is spending more time with his son, rather than any great improvement in the clarity of my son's speech.

Well, that little incident cheered me up today. Shortly before calling Papa, I helped him to dial my mobile number several times, just for fun. He loved it! And so did I.

I'm also very glad that Papa is having more Father-son quality time. It relieves me for a bit so I can shower, or see to bits of admin etc. It'll be even more important in the months ahead.

Monday, February 22, 2010


I've been sad and worried lately because the progress that we made in my son's development has been lost to some extent:

- he's not sitting 90 degrees (that took many months of gross motor and CST work to achieve)

- he's walking stride has shortened (that took many weeks of Neurosuit activities to achieve)

- he's drooling a lot, and more often (that involves a lot of oral motor work)

- his posture when running is more akward (that was after months of Neurosuit)

I believe the regression happened because we stopped gross motor, fine motor, oral motor activities, Neurosuit activities over the last 3 mths. During that 3 mths he was sick at least 4 times (some episodes milder than others) so Neurosuit activity was stopped. Also, to a great extent, I was busy with errands, with reorganising stuff at home, with learning and making new activities for him.

The feedback that I got recently (from more than one person) was that I was far too focused on my son, and that I should relax more. So, over the last month, while my aunt was here, I hardly did anything with my son. I saw to the errands and household administrative matters, lots of cleaning up, tidying up, preparing for my helper's departure, and more recently with Chinese New Year, I ate a lot and rested more.

But, as a result my poor son's development has suffered....or perhaps I should say that as a result, I've got a tough road ahead over the next 6 mths or so:

- My new helper doesnt speak my language and I dont speak her language. I'll have to spend a lot of time to teach her things

- She's new and so would be of limited help in caring for my son compared to my existing helper. My helper feeds him. She plays with him when I need to take care of admin or when I need some sleep.

- It'll be even harder to get back the progress lost because I've far less time to do those activities now that he's in school

- I've additional aspects to deal with ie. social skills and school readiness skills (for which I've no one to consult on the screaming and running around issues)

- I also want to start a new therapy with him (hyperbaric oxygen therapy)

Talk about having a mountain to climb! I feel mine's a slippery mountain because there's the risk of losing (hence "slippery") all the hard work. I guess that's why parents with special needs kids need lots of support.

I feel guilty. I feel bad. I feel like crying. Perhaps I should not have listened to other people. I should have followed my gut instinct and just kept going with my son.

I was struggling internally with this matter. Now that I've written it down and faced my fears, I shall try not to cry over spilt milk. It's not a pity party but a lot of worry and fear. I have to look forward. I have to be positive. But I honestly do not know how I'll cope in the next few months. What I do know is that I've to keep turning to God for help. With God, all things are possible.

Preschool for kids with learning difficulties

My son had therapy session today where the therapist recommended a kindergarten run by a friend of hers for kids with special needs.

One of the therapist's clients, a boy with mild autism attends the place without a shadow aide. Their teachers have special needs experience and very small teacher student ratio. From their website, there are therapists there too.

I would like to check out the place because I'm very concerned about my son's behaviour in school. I dont want it to get worse. He might be acting up because I'm there. But I'm not comfortable enough to leave him alone there as I see that the teacher has too much too handle with 2-4 other kids that need special attention. Today, the out of the box girl was mostly in her own world exploring tiny stuff on the floor.

I'm not able to help him to be independent fast enough to release me from being his shadow aide. So I dont think the school would be comfortable in allowing him to be without a shadow aide.

I think The Learning Connection place would be costly (given their specialised teachers and small ratio) but if they can help my son learn social skills and prepare him for primary school, then it might be worth it. I certainly am struggling to help him. But it's a risk and the monetary amount involved is not small (we've also paid for 6mths at existing kindergarten, which we'll not get a single sen of refund)

Their website is

This is an article I found on the place, that was published in The Star back in 2006.

PARENTS with children who have learning problems will be interested to note that The Learning Connection has opened its doors at Mont Kiara, Kuala Lumpur.

The Learning Connection, headed by learning specialist Sara Brenneman, hopes to help children who have problems learning (including dyslexia) or even those who have attention-deficit problems.

Brenneman, who launched The Learning Connection in August last year (ie, in 2005), says she only started enrolling children at her centre in September.

She specialised in special education when she was teaching in the United States.

When she moved to Malaysia, Brenneman taught at the Mont Kiara Interna-tional School, but after some time she felt it was time to resume her work with children who had learning disabilities.

Brenneman believes there is a need for a centre like hers as schools usually lack the resources to address the requirements of children with special needs.

Right now The Learning Connection has just a few kids and part-time teachers. Brenneman hopes that the number of students will increase over time.

Although Brenneman says she would rather work with preschool children, she does accept and help children up to the age of 10.

The rates vary depending on the case and how much individual work is needed.

Now, The Learning Connection offers a preschool programme for children aged between four and six years.

There is also tuition for students with learning disabilities where one-hour individualised sessions are planned according to the student’s needs.

The Learning Connection is also working with Hil’s Sdn Bhd to offer a programme for children with Attention Deficit/Hyperactivity Disorder (ADD or ADHD).

While Brenneman admits certain medicines have been known to help children with ADD and ADHD, she pefers to help these children by helping them to better focus their attention and remain calm when studying.

First FDA-Approved Stem Cell Trial in Pediatric Cerebral Palsy

ScienceDaily (Feb. 11, 2010) — Medical College of Georgia researchers are conducting the first FDA-approved clinical trial to determine whether an infusion of stem cells from umbilical cord blood can improve the quality of life for children with cerebral palsy.

The study will include 40 children age 2-12 whose parents have stored cord blood at the Cord Blood Registry in Tucson, Ariz.

Umbilical cord blood is rich in stem cells, which can divide and morph into different types of cells throughout the body, said Dr. James Carroll, professor and chief of pediatric neurology in MCG School of Medicine and principal investigator on the study.

Cerebral palsy, caused by a brain injury or lack of oxygen in the brain before birth or during the first few years of life, can impair movement, learning, hearing, vision and cognitive skills. Two to 3 children in 1,000 are affected by it, according to the Centers for Disease Control.

Animal studies indicate that infused stem cells help injured brain cells recover and replace brain cells that have died, Dr. Carroll said.

"Autologous stem cell transplantation, in which the transplant recipient is also the donor, is the safest form of stem cell transplantation because it carries virtually no threat of immune system rejection," he said.

While no controlled clinical trials have been conducted to date, previous studies have shown marked improvement in children with cerebral palsy about three months after an initial infusion of cord blood.

"Evidence up to this point has been purely anecdotal," Dr. Carroll said. "While a variety of cord blood stem cell therapies have been used successfully for more than 20 years, this study is breaking new ground in advancing therapies for brain injury -- a condition for which there is currently no cure."

Children will begin the study with a neurological exam by MCG pediatric neurologists Elizabeth Sekul and Nicole Brockway. Then, half of the study participants will receive an infusion of their own cord blood while the other half receive a placebo. Three months later, the children will be evaluated without physicians knowing which group received the stem cell infusion. Afterward, children who didn't get the cord blood initially will receive an infusion. Children will return three and six months later for evaluation.

Researchers will periodically assess the children's motor skills and neurological development.

"For the purposes of this study, we're not looking at stem cells as a possible cure; rather whether stem cells can help change the course of these types of brain injuries in children," Dr. Carroll said.

Study participants must have been unable to sit independently by 12 months or unable to walk by 18 months and must be seizure-free or have seizures that are adequately controlled.

To ensure consistency in cord blood stem cell processing, storage and release for infusion, the Cord Blood Registry is the only family stem cell bank participating in the study.

The trial is also receiving support from the Associazione Figli Inabili Banca d'Italia, a private organization in Italy that provides financial assistance to parents who can't pay for their children's medical treatments.

Article copied from:

Thursday, February 18, 2010

Back to routines

We're back from our CNY break.

It was a good break but in a strange way, I look forward to resuming my/his routine. It was too long a break from our routine due to running errands, taking things a bit slower (due to feedback that I'm too focused on my son), reorganising things at home prior to my helper's departure, and of course the week long CNY break.

It's been several months (I think 2 mths) since we did NeuroSuit therapy regularly. He started kindergarten in Jan (and not forgetting the Dec holiday prog too), so there was much less time to do it (now restricted to evenings which are then subject to the weather). He also fell sick a few times since starting kindergarten, each time needing about 2 weeks to fully recover and therefore off from Neurosuit. 

As a result, his walking and running gait have worsened. I'm sad about it. I know he can improve again but it'll take a lot more effort on our parts now (due to time constrains and losing my helper). For one thing, it proves a point - I cannot and should not let up on my efforts in helping my son. It's a slippery slope.

I have things cut out for me the next 6 months. I need him to sleep well at night so that I get my rest and would then be able to function much better during the day - at kindergarten, helping him be independent, doing therapy-like activities with him, possibly doing hyperbaric oxygen therapy (HBOT), and possibly Lokomat physiotherapy. All things are possible with God's help. I sure will need a huge dose of His help! But I also know that it'll be based on His timing, not mine.

Sunday, February 7, 2010

Been busy

I've not updated my blog over the last week.

No worries, no one is sick, thankfully. We've been attending kindergarten each day and there is much I want to write about on that topic, but that's for another post.

It's just that I've been busy running errands and organising stuff at home. I've not fallen ill nor got too stressed despite all the running around. I think that's mainly because I made sure I got to rest when I needed to. I've to make sure I do not fall ill these few months as there is more I've to see to before my helper leaves.

That meant that I did very very little with my son outside school hours. No gross motor activities. No trips to the park or KizSports. No cycling. At best, it was 5mins a day either on a fine motor activity or to read him a book.

My list of errands included driving to TNB Jinjang office, DBKL HQ, Ikea, Daiso, insurance co, Putrajaya Imigration Dept, on top of the more usual errands. The traffic...the lack of parking... the heat! I think it's the heat that tires me out the most.

I wish government offices were more efficient. I wish I had a personal assistant! I wish I didnt have to choose between my son and running errands but I do cos, I only have afternoons to do it now that I'm his shadow aide.

I'm thankful that my aunt has been around most of last week to keep an eye on my helper and son while I was doing all that. I'm also thankful to my aunt for treating me to a delicious 3 hour Japanese lunch! It's my once a year treat from her! : )

Well, the good news is that this coming week should be easier as most (but not all) errands have been done. Also, I've got lots of new fine motor activities lined up for my son. I've not got the time though to snap photos of them for my blog. I'll try to do so, so that I can then write about it over the chinese new year break. One day maybe, they'll invent a machine that can effortlessly capture thoughts and images, for sharing with others! : )

I look forward to bringing my son to KizSports tomorrow. He's been hankering for it, poor thing. It's probably the only time I have to do so before the CNY break.