Sunday, March 28, 2010

Which school system suits him?

He turns 5 at the end of the year, so we will need to register him for primary school. That to me, is such a big decision fraught with uncertainty. That seems so premature because, I haven't even decided which kindergarten to put him in (I'm unhappy with the current place).

Basically these are the following school systems to choose from:
- our neighbourhood government primary school
- private school following the local syllabus
- private school following an international syllabus (leading up to O levels for e.g.)
- Chinese medium school
- homeschooling centres
- homeschooling

I can safely rule out the Chinese medium school (I'm not Chinese literate amongst other reason) and homeschooling centres.

Govt school
The one in our neighburhood is a "high performance" school, which is likely to mean that the teachers are comparatively better than other govt schools. Or it might also mean that there is some sort of "natural selection" going on because kids going there might have very involved parents who send them for many enrichment centres/tuitions (due to demographics).

Financially, that would be the least expensive option.

My concerns are:
- large class sizes (40-50 kids) mean teacher has no time for my son (unless they accept shadow aides, but we dont want him relying on one, nor make him an easy target for bullying)

- Malay medium: I'll have to put in even more effort helping him at home cos we use English at home and because my resources (books and internet stuff) are in English

- focus on academic performance: while that's good to some extent, I'm concerned that the school may put too much pressure on my son to perform, in order to maintain their reputation as a "high performance" school. Alternatiely, they may "give up" on my son simply because he has a speech delay and will be slow to copy things from the board, etc. Teachers are likely to put that effort instead on other kids that are easier to help.

- no longer a favoured choice by those who can afford other options. There are many many reasons that parents no longer send their kids to govt schools. For me, one of my biggest grouses is that I think it is ridiculous that kids have to go for tuition after school. To me, kids should be taught whatever they need to know (syllabus wise) in school, full stop. Tuition should not be the norm for majority of the kids. When then will I have time to do gross motor, fine motor activities with him? When will we have time to learn about the world outside of books?

- there's too much rote-learning. That just not good enough anymore for the future (or even for the present day!). Kids need to learn to think for themselves, to be creative etc.

Private schools
Similar to the points on govt schools except that the class sizes are smaller, hopefully less likely to need tuition, but far more expensive. Some private schools might be more sympathetic to special needs kids, though those I've heard of tend to be international schools.

International schools
Similar to the points on private schools, except that some I know of have accepted special needs kids with shadow aide, but kids may find it a bit hard to relate to (e.g. we don't have 4 seasons here) and it's even more expensive. Cost is an important factor because he may still require various therapies.

It's appealing cos kids learn more at their own pace. It's a form of "individualised education plan" (IEP). For e.g., in US, special needs kids get IEP for free, at public schools. Parents are very much involved in the IEP, together with the kids' educators (not just teachers, but educators).

I feel they learn more about the world through practical experiences (e.g. how many kids have seen a real cotton tree with the cotton strewn around it? Well, my son has).

Parents can instill the right values (e.g. sports should not be just about winning!).

It's less likely that the love for learning would not be killed (it most likely would with a govt school syllabus). Ditto that for creativity. See this video by an internationally respected educationist and thinker about schools killing creativity....

Kids can still choose to go down the academic path, to university overseas, by sitting as private candidates for 'O' Levels or 'A' Levels. Check out this Malaysia parent's blog on homeschooling. There are 2 articles where the kids sat for those (or perhaps SAT for one of the boys) :

But I seriously worry that I might not have the energy, skills, and patience to do homeschooling. It's a huge long term commitment. It's very appealing but oh so very daunting.

I do not have a conclusion! Decision has not been made. What I know is that it's the end of the first quarter of 2010. Time flies. I've to talk to more mothers, especially those with young (5-10 year olds) special needs kids whose disabilities are mild, and to teachers who chose teaching as their first choice of a career (ie an educationist, not just a teacher). If you know of any, please let me know! If you are one, I look forward to hearing your advice! My circle of such persons is tiny!

Saturday, March 27, 2010

Speech Therapy - 25 Mar 2010

It was 5 mths ago since our last speech therapy session. I've made 3 appointments since Jan but it never happened because he fell ill on 2 occassions, and the therapist fell ill once. So, since his cold was mild, we went for it (even though it meant picking him up and strapping him in the car seat while he was still napping!)

The therapist was happy with his progress. She noted he's much more stablewhen in motion, has better sitting posture, trunk control has improved etc. Ah, the wonders of Neurosuit (even though I've not been consistent lately as he fell sick often) and CST. She was happy that he was less gurgly, less breathy, and that he didn't need to put in the effort to sound out each word. I hadn't noticed those points! Perhaps because I see those changes very gradually on a daily basis, whereas she hadn't seen him for 5 mths.

She said that it meant that things were coming into place for him (his toilet training progress being one of them). And since she knows his intellectual faculty is all there, she was confident that his speech will continue to progress. That's also because she knows that I do my bit to help him in his daily life.

When I shared that I hadn't been doing all that much with him lately (gross motor, fine motor and speech wise), she said that that probably indicates I may not need to be as intensive with him as I once was. I think there's some truth in her comment. I do know that I want to focus on OT skills (self care), while doing "maintenance work" for his gross motor. As for academic skills (reading and maths, and BM) I do it informally when I remember, or formally when I have the time (which is seldom now really). I feel terrible about not being as intensive, but honestly, that's the best I can do right now. I've digressed...

I shared that he's able to put 8 word sentences together although it's seldom; that his volume has increased a lot; that he's beginning to express himself without prompting; that he hardly speaks in school; that his articulation still isn't clear with certain phonemes. On the part of articulation, she said that /r/ comes in later at around age 6. Also, since he can sometimes say /k/ (e.g. when it's in the middle or end of a word) he will eventually learn to say it at the beginning of a word.

Since we hadn't met for so long, we spent several minutes talking about schooling. She mentioned of a school in Shah Alam that employs the Montessori method beyond the preschool age. Sounds great except that Shah Alam is too far! She also shared about a mom who decided to homeschool her child because she didn't agree with the schooling system here (too academic, too much rote-learning, too much being pushed down to preschoolers which should be for Year1 kids) and that the teachers at the child's kindergarten were not supportive of her very mildly dispraxic child. That's so similar to how I feel, that I started thinking that perhaps I should find out more on homeschooling.

Since she was happy with his progress, we'll be meeting her next, in 3 mth's time! : )

Toilet training progress

This post is a little overdue. He has done very well in the aspect of toilet training.

He can tell you when he wants to shee shee, though he sometimes holds it in a bit too long when focused on an activity, until it becomes too urgent. He moved on from shee-shee-ing in the shower cubicle to the WC about 1-2 mths ago. I was confident enough of his new skill that he went without his diaper to school on Wed-Fri, two weeks ago (before the hols).

He can now also tell you when he wants to poo. Last week, he started to poo-poo while seated on his potty. That is a very big achievement! When we started toilet training him, he insisted on poo-poo-ing in his diapers for a very long time (a year or more!). Early this year, he began to occasionally poo without his diapers (onto the floor of the shower area). Then he progressed to being seated on his potty.

The concept of reward stickers only worked recently when he knew he could shee shee and poo poo in the toilet, and not before that stage. My shower screen is becoming rather colourful with big toilet stickers (the size of your palm or larger) of 2 fire engines, a police beach patrol jeep, 2 policemen, an ambulance, a rescue helicopter, a steamroller, a digger, a cement mixer and a dump truck! I love it cos it shows he's progressing...and it makes it easier to lure him into the toilet to have his teeth brushed! LOL

We still need to work on him going to toilet independently because he isn't able to pull down and pull up his pants. He's only just learnt to use both hands to grip (previously when I help him to grip with one of his hands, then by the time I move on to help him grip with his other hand, his first hand would have let go of his pants). He has learnt the balance that he needs, to pull up and down. But I think his fingers are not strong enough to grip the elasticated waist of his pants and underwear, and pull them up or down. He's also not yet learnt to find where the elasticated parts are, when he needs to pull them down or up. That's just a few of the many more steps that he's got to master before being able to go independently.

However, to me what's important is that he has achieved that crucial step of recognising his bodily signals, and responding in time, and overcame whatever fear he had about it. To me, that's huge progress. The rest involves motor skills that I can work on through daily practical life activities (I think).

Tuesday, March 23, 2010

So hard for me to slow down

I am unlikely to be able to update my blog on a regular basis from now on. I will try to write once a week when things are a little more settled down.

My current helper flew off yesterday, Sunday 21 March. My new helper is arrived Wed 17 March, but due to the huge communication barrier (and cultural differences), it is an extremely slow process for me to teach her things. It'll be very physically tiring for me over the next few months but that's alright because in return, I will no longer have the mental tiredness and frustration caused by the old heper. My home will be peaceful again. I only pray that I don't fall ill during this settling down period.

The timing was such that my son started coughing (phlegm) on Tuesday 16 March, requiring the nebuliser. It got me so worried cos last week was a busy week. He got much better (thnks for praying!) by Thursday 18 March but got worse again on Sat morning, 20 March (probably cos he threw off his blanket). I too was feeling mildly sick from doing a lot of gross motor activities with my son (twice a day on 13-15 March) and completing remaining chores/errands.

Pray we all have sufficient rest and strong immune systems!

Having cancelled all his activities on Sat (music class, birthday party, CST, dinner out), he seemed a bit better on Sat night. I too felt better. I have come to accept that I will have to slow down (a lot) on the things I wish to teach my son (reading, maths, Malay, Neurosuit, fine motor, etc).

We didn't go to school today, Mon, 22nd March cos his cough started again last night. I started nebulising him again this morning. I wanted to take him for one more dose tonight, but he had falled fast asleep on the way to the hospital. I think that's cos I didnt manage to get him to nap this afternoon, and that by the time I fed him dinner and his milk, cleaned him up, had my shower, dressed him etc, he was just too tired (10.30pm)!

Going forward, I will use the times I feed him, cook for him, shower him, brush his teeth etc as opportunities to engage with in a positive manner instead of seeing it as chores or as time I could have spent on therapy based activities.

It takes up so much time to see to his basic needs - for eg. each feed takes 1 hour! At this rate, we'll be perpetually late for school, therapy appointments etc! LOL. I've not found a new equilibrium as yet, now that the old helper has left. I really have hardly time for therapy based activities!

I've come to accept that I'm forced to slow down tremendously (at least temporarily). Part of me, though, wants to get back into the old routine of lots of teaching/learning and gross motor, fine motor, oral motor activities. But this played in my head as I wrote the para above...















Sunday, March 21, 2010

Should he join in Sports Day?

I was upset by the school over the planning of their Sports Day. Actually, its the administrator whom I'm upset by. Not surprised, huh?

On the last day of school before the current 1 week holidays, teacher tells me during PE that the principal's instructions were that for the kindergarten level kids, each kid MUST throw a ring onto a cone placed at a slight distance from where they stand, before being allowed to run back to his team to tag the next team member. The kid must keep on throwing until he succeeds...simply because if it were otherwise, the game would end too early. Ah, wait, keep your comments first cos there's more...

Teacher then therefore suggests my son join the Playgroup kids (mostly 1+ to 2+yr olds). On the spot I thought it a bad idea as he's unlikely to want to join playgroup "babies". He'll want to be with his peers. His therapist later pointed out that doing so would crush his confidence.

I called the principal on Tues for permission to borrow a hoop, cone and ring for practice at home. She explained some things to me, interesting things that gave me a better (but ugly) understanding of how they viewed kids with special needs.

According to the principal, she views sports day with the objective that participation is more important than winning especially at their age. I agree with that.

In relation to my son participating but not being able to get the ring on the cone, the administrator informed her that based on her experience, parents (of normal kids) would complain that their kids didnt win a prize because of my son and so, my son should NOT take part. Now, what do you think?

Oooo, I'm so mad! Mad enough to almost wish evil things upon her!

Wait, there's more! Principal continues to explain the backdrop. She tells of last year's concert. Apparently a special needs child was hogging the spot light, "ruining" everything! A parent (or parents) complained that it "spoiled" the event and was poorly organised etc. Btw, after that comment was fedback to the parent of the "show spoiler" kid, the kid didn't return this year.

Principal further explained that she helps out on some afternoons at another kindy to train teachers on how to handle ADHD or ASD kids. The principal of that other kindy told the parent of an ADHD kid that he "need not" return next term (ie expelled). She emphasised that point a few times. E.g. she said that the principal didnt even want that parent's fees....that kindy's fees are expensive (RM700) and yet the principal didn't want it. There were several other statements made to emphasise expulsion.

I'm getting the impression that their "values" are kinda skewed, dont you think?
  • There's non-acceptance of special needs kids (by the administrator).
  • Concerts must be perfect (that's why in the weeks running up, they practice twice a day!). Being imperfect is bad.
  • Sports day is all about winning. Kiasu-ness is a more important value to teach the kids than accepting people who are different from you.
  • Don't bother about teaching them it's ok to lose; that you can't win all the time
  • Choose team members who are of equal calibre and not lower calibre. Afterall, who would want a team member to slow them down, right? It's a harsh world out there.
  • Parents of normal kids have a much more powerful influence on the school's mgt, whereas parents of special needs kids have the threat of expulsion hanging over them.
On a more positive note, the principal, having spent many years in special ed is more understanding about my son. She sounded almost apologetic when explaining that the administrator has been in that position for decades, whilst the director comes from a commercial background. She being new, had to stay "neutral" towards integrating special needs kids. I sense politics brewing in the mgt team, and her position as principal might be precarious too.

Do you think I should stay on in that school? Please do tell if you know which other "normal" kindergarten practices "integration" rather than "segregation" of special needs kids....and allows a shadow aide...and has enough space for my son (to move without fear of being pushed aside to make way)...and strives to truly educate (not just teach via rote learning). Am I asking too much?

And back to the point on Sports Day...should I stop him from participating totally? Should he join Playgroup kids? Should he join his peers? Btw, I tried getting him to practice throwing the ring...he's unlikely to master it by mid April (esp now I've changed helpers).

A few months ago, a reader wrote in to The Star. In it the reader said something like this: 'if society cannot help the weakest of us, who need it, then what kind of society is it'. That phrase btw, is also what a counsellor told a parent of a special needs boy when she got the diagnosis of autism. Looks like the answer I'm getting from the school is "a society intolerant to differences".

Friday, March 12, 2010

Creativity and the schooling system

Article appeared in The Star, Education pull-out, on Sunday February 28, 2010

Innovative insights


Creativity is about empowering students with the ability to look at the world in new ways

IN a brigh and cheerful room, a small group of preschoolers quietly embark on the day’s art lesson. Filled with colourful plastic furniture and small pamphlets proclaiming “crash courses” in creativity, the environment appears to provide a haven for young minds to nurture their imagination. Clutching a A4-sized piece of paper, four-year-old Mei Lin is eager to show off her latest artwork to her teacher.

“This is where I’m going to live when I grow up,” she says proudly. It is a typical child’s drawing of sorts; smiling stick-people beside a structured square house, flanked by rows of purple trees.

The teacher, however, has some reservations. “This is wrong,” she says. “Trees aren’t purple, they have to be green.”

Peering over the other drawings, the teacher proceeds to admonish her charges for committing other cardinal art sins, such as colouring outside lines and generating anatomically incorrect house pets.

As the children swiftly erase their mistakes, the teacher explains her creative centre’s philosophy. “It is important for children to learn to express themselves, and our crash courses offer them a quick way to become more creative.”

A week later, Mei Lin’s father, Lim Chee Hong, pulls her out of the class. “She loves to draw, so I thought the classes were a good way for her to meet other children her age while doing what she likes,” says Lim. “After going there for two months, I noticed a change - she used to paint with abandon, now she obsesses over drawing a perfect circle.”

Being out-of-the-box
With all the buzz over the knowledge economy, even policy-makers are stressing that creativity is de rigueur for Malaysia to put itself on the map.

Just last month, Prime Minister Datuk Seri Najib Tun Razak launched Malaysia Innovative 2010. “Innovation creates jobs and boosts national competitiveness,” wrote Najib on his blog last year, when declaring 2010 to be the Year of Creativity and Innovation. “This is why we, too, must make a creative impact in a competitive global economy.”

But what determines the makeup of a creative individual?

Defining the concept of creativity itself requires some imagination; some researchers speculate that there may be over 60 definitions of what creativity is.

At a more humble level, most of us will probably identify a creative person as someone who is able to think from different perspectives and come up with novel ideas.

An educationist with a local insitution says that while it is crucial to harness creativity for the economic marketplace, it is important to adopt a holistic approach to teaching it. “We cannot purely focus on directing creativity in one particular area, such as information technology, if we want to engage students beyond a superficial level,” he says.

“Creativity should not be seen as an end-product or a commodity, but a lifelong process of trial and error.” He adds that students should be exposed to a range of disciplines in order to develop their creative faculties. “Co-curricular subjects such as music and sports give our students an edge just as other academic subjects will.

“As the world is becoming more and more visual each day, the education system has to move towards right brain activities so that students are able to see issues and problems from different points of view.

“Even with our academic subjects, mere rote-learning to memorise pages of factual information is not enough to equip students with the sort of analytical thinking skills needed for the current era,” adds the educationist.

In his talk titled “Why Schools Kill Creativity”, creativity expert Sir Ken Robinson argues that educational systems around the world rob children of their imagination.

“Children have an enormous propensity for creativity because they have a natural sense of curiosity. Robinson says that current school systems around the world are killing creativity because of their rigidity. "We lose that potential as adults, because schools are educating us out of creativity,” he laments in his presentation, filmed during the TED Conference 2006 in Los Angeles.

Still widely circulated on video-sharing website YouTube three years on, it is clear Robinson’s point of view resonates with a fair number of people.

It is fair to point out that no country serious about education wants to actively take away the innovation of its people.

Indeed, our own National Education Philosophy states the ministry’s desire to “develop the potential of individuals in a holistic and integrated manner” so as to produce individuals who are able to contribute to society. From pre-school to secondary education, the curriculum stresses the need to foster creative thinking skills amongst students.

However, former teacher Ramlah Mahmood says that the entire framework of education in Malaysia needs to be overhauled if we are to develop a more innovative culture.

“Teachers are frequently called upon to be more creative with their teaching methods in order to engage with their students,” she says. “But engaging students through interesting lessons doesn’t always mean that they’ll be able to score high marks in examinations. "Unfortunately, the value of your teaching is ultimately measured by how many A scorers you produce. It’s how schools are judged and what many parents expect.”

Ramlah adds that when she was teaching, she had to choose between finishing the syllabus or planning lively lessons. “Teachers are so swamped by other duties and unnecessary paperwork, making them hard-pressed for time,” she adds.

Teacher Marion Lee agrees, saying underlying factors within the system tend to get in the away of inculcating creativity and making students think out of the box. “I think the main problem in our school culture is that students have this enormous pressure to be right all the time. “But in order to be innovative, you have to be prepared to come up with ideas that initially may seem impractical and impossible to many”.

Echoing Mei Lin’s purple tree experience, Marion says that there have been numerous occasions where her colleagues had reprimanded or belittled students for giving unorthodox solutions.

However, she admits that traits associated with creative students, such as challenging conventions and being expressive, tend to cause disruptions in the traditional Asian classroom. “When you are dealing with 30-odd students and you need to complete the chapter of the day, it’s a constant effort to make sure that the entire class reach the minimum level of understanding. “In an ideal world, I will be able to cater to all the students according to their various learning styles; in reality, I do get impatient with those who insist on asking questions all the time.”

Youth speak
While the rest of the country debates on how best to harness the new generation’s creative potential, it appears that students have more pragmatic concerns on their minds. From the many secondary students interviewed for this article, the prevailing view from most of them is whether their schooling experience would help them find suitable jobs.

Ahmad Tajuddin, 17, thinks that lessons in creativity are a must so that students are able secure employment in the future. “The whole point of going to school is so that I may qualify for university and then get a decent job,” he says. “Since employers expect potential employees to have good problem-solving skills, schools should focus on helping us develop that sort of creativity. “If we’re only going to learn that in university, it may be too late.”

A significant number of students also had a very specific view of what being creative meant.

“Oh, I can never be creative – I can’t draw,” says Vanessa Nathan on why she chose to enter the science stream instead of the arts. Unwittingly, the 16-year-old then reveals that her brain may be more innovative than she allows herself credit for.

Some teachers find it hard to pay attention to students who display creative traits because they have to cater to large classrooms and various other duties.

“I love Mathematics because it’s almost as if I think in numbers, and the world makes most sense to me when I break it down into statistics.” “In my school, the ‘smart’ students are streamed into the sciences, while the less academically able do arts. “Because of that, the science classes get the best teachers and are pushed more, while the only expectation of arts students is that they pass their exams.”

Vikram Chandra, 17, is noticably incensed by the marked division between the arts and sciences. “It really annoys me when my friends say that only science subjects allow space for analytical thinking, and that I’m wasting my mind and time by choosing to do arts,” he says. “These same people memorise entire Physics experiments from their textbooks and regurgitate the information during examinations – how does that promote critical thinking?”

He adds that for him, creativity is all about making unorthodox links to dsicover new solutions. “There will be more room for creativity if students are exposed to fields in both the arts and sciences. “For example, if someone is interested in both fashion and chemistry, he may be able to come up environmentally-friendly clothing designs.

Artistic licence
Despite the increased appreciation of creative industries and their roles in national development, arts education is still lacklustre at best.

Creativity is about expression and does not necessarily require one to obsess over drawing or colouring within the lines.

One headmistress, who declined to be named, admits that arts lessons, along with physical education classes, are seen as low priority by both her staff and students. “This is especially so for batches who are preparing for national level examinations, when students opt to use those class times to do revision instead. “Since its not an examinable subject, no one is interested,” she says.

Visual artist and lecturer Tan Hui Koon says that the arts are useful in unlocking creativity and transferring knowledge. “This involves a two-fold process; teaching creatively and teaching for creativity,” she says. “Artistic disciplines such as theatre and literature in themselves help students think laterally and imaginatively, as well as make them more confident at expressing themselves.

“Meanwhile, using art forms during class will help students digest information more easily; an example would be using pop songs to teach a new language.” From her own experience in conducting arts workshops with children, Tan says that her main goal is to get students to think for themselves.

“It’s not about producing future Picassos or visionaries, but empowering students with the ability to look at the world through exciting new ways. In that context, creativity is about allowing people to use their individual talents to engage with the world around them.”

Thursday, March 11, 2010

Feeding the CP child

The paragraphs below are copied from which has extracts from various books on CP kids.
To explore in detail the feeding of a child with cerebral palsy, we recommend chapter 8, by Marian Browne within the 2003 text “Children with Cerebral Palsy” by Archie Hinchcliffe. The chapter is titled, ‘Assessment and management of eating and drinking difficulties’ and explores the subject from a number of perspectives and offers additional references at the end. The chapter begins…

“Many children with CP have eating and drinking difficulties. These range from relatively minor difficulties in coordination of oral movements causing eating to be slow and with excessive spillage, to severe incoordination of the swallowing mechanism, causing ill health and even life threatening conditions. Mealtimes may stretch up to 15 times longer than for other children…and even despite this lengthy eating time, the children often do not receive adequate nourishment. Bax (1989) found that 20 per cent of the children with CP in his study were severely underweight or badly nourished due to eating and drinking problems. This represented half the children who had eating and drinking problems.” (Children with Cerebral Palsy: p. 157)

Some children with CP have difficulty keeping their mouths closed and/or have a habit of thrusting out their tongue when trying to eat. It can also take a long time to move from the mouth movements associated with sucking from the breast or bottle to the rounded chew required to break down solid food in the mouth. If you child has difficulties with this, the move from the sucking to chewing may need to be encouraged slowly and patiently by very gradually increasing the density of texture and later on the ‘lumpiness’ of the food offered. Some children with CP have difficulty with their gag reflex. This means that they find it hard to cough up bits of food that go down the wrong way. If this is a particular problem for your child, advice should be sought from a speech and language therapist or your pediatric consultant.

Whilst your child needs your assistance with eating you could give her the opportunity to try to feel herself at each meal, provided your are satisfied that she has eaten sufficient food for nourishment. This can be done however severely affected a child is. At the very least you can place a spoon in the child’s hand and guide it as far as is comfortable to give her first-hand experience. If she is able to get her hand to her mouth you can guide the spoon all the way. You can also encourage her to pick up food (such as cakes, biscuits, bread or fruit) in her hands and bring it to her mouth. Make sure, however, that such an activity does not contribute to her receiving insufficient nutrition. If in doubt consult a dietician to ensure that your child is getting an adequate diet before introducing this kind of self-help.” (The Cerebral Palsy Handbook: 103-104)
“Feeding is a problem for many babies and children with cerebral palsy. For some children, the problem is a medical one. Some children, for example, are more likely to choke on food because they have no gag response. If your child has trouble feeding, you should naturally rule out all possible medical reasons before proceeding further.

If a medical examination fails to turn up any condition that would make feeding difficult for your child, the next step is to analyze your child’s problems in the feeding process. In most instances, early difficulties with feeding will turn out to be related to problems with either movement or touch, or both.

Movement problems that can complicate feeding for children with cerebral palsy include problems with jaw control and with tongue, lip, and cheek mobility. These movement problems can usually be traced to having muscle tone that is too high or too low. To bring your child’s feeding problems under control, you must therefore help him bring his muscle tone problems under control. Through your holding or positioning style, you should try to normalize your child’s tone as much as possible before beginning the feeding process, and to maintain it until you are through. If your child still has trouble controlling his jaw or closing his lips, you may have to provide some external support. For instance, you may need to use your hand to support your child’s head or to help him close his jaws. As Chapter 7 discusses, a speech-language pathologist or an occupational therapist can help you customize these techniques for your child.

In addition to problems with movement, children with cerebral palsy sometimes have sensory problems that make feeding difficult. Some children, for instance, are overly sensitive to touch in and around the face and mouth. They find the touch of food, a nipple, a spoon, or even a hand unpleasant and may react to touch around the mouth by biting down, turning away, refusing to open their mouth, or even vomiting. This overreaction to touch around the mouth is referred to as oral tactile defensiveness. The condition may be so severe that any attempts at feeding are unpleasant and sometimes impossible, or it may be so mild that a child only rejects foods that combine more than one texture – for example, yogurt with chunks of fruit.

Some children with cerebral palsy have a feeding problem that is the opposite of oral tactile defensiveness. Instead of overreacting to touch around the face and mouth, they under-react. Because they do not have adequate feeling in the mouth, it is hard for them to know how much food is in their mouth, where it is, or how to move it around their mouth and when to swallow. Children who have a mild form of this condition often do not know or feel when their chin is wet from drooling or that there is food in their mouth or on their chin.

A child who overreacts or under-reacts to touch can improve feeding skills through a careful program of controlled oral motor input – that is, through a program that gradually desensitizes or sensitizes him to touch in and around the mouth. If your child is oversensitive to touch, it is best to begin touching him (with your hand or a toy) outside the mouth and slowly work up to touching him inside the mouth. Remember that firm pressure is more acceptable to your child than light touch. If you child will now accept your hand, you may want to guide his hand to do the stimulation. If your child is under-responsive to touch, you will want to bombard him with input from different types of touch and texture. An occupational therapist or speech-language pathologist can show you how to use different food temperatures and textures to increase your child’s awareness of what is in his mouth. You may also find that placing a mirror in front of your child during mealtimes helps his feeding skills.” (Children with Cerebral Palsy: p. 122 – 128)

“Children with cerebral palsy often have associated feeding and swallowing difficulties. Common problems affecting feeding include tongue thrusting, prolonged or exaggerated bite reflex, abnormally increased of decreased gag reflex, tactile hypersensitivity, and drooling. Coughing, chronic wheezing, or bronchitis can be secondary to aspiration during swallowing or gastroesophageal reflux. An oromotor evaluation and clinical feeding assessment can provide valuable information regarding the oral phrase of swallowing, but it may fail to identify disorders in the pharyngeal and esophageal phases of swallowing, such as aspiration, which may be detected with a videoflouroscipic study.
To help a family overcome the problems that arise in feeding a child with cerebral palsy, a team approach should be implemented. This team should include all relevant health care professionals and the patient’s family. The professional members of the feeding team should include a gastroenterologist, occupational therapist, speech therapist, dietitian, nurse, and psychologist. The evaluation should encompass the patient’s ability to suck, masticate, swallow, control head and trunk, maintain nutritional status, and sustain an adequate level of consciousness (neurologic status). The family’s desires and expectations in regard to the child’s feeding capacities should also be considered. (The Cerebral Palsies: Causes, Consequences, and Management: p. 309)

The earlier years - feeding

It was only a few months ago that I realised, upon reading articles on CP kids, that feeding is usually an issue. Had I known from the start, I would have been less stressed out by the difficulty we faced with feeding him.

He would vomit very easily. We thought it was GERD, or too much gass, or a spinchter muscle problem, but was not quite sure. His peaditrician said it wasn't GERD, but I until today, suspect it was a mild version of it. He does until today have quite a lot of flatulence. As a baby, we rubbed the legendary Yu Yee oil on his tummy, but it was of limited help.

Friends and relatives would give their advice, most of which I would have tried but didn't make feeding him easier.

It did though make me feel very very very guilty, cos it's such a basic thing for a mother to feed her baby and I couldn't do it! In the end, my helper was the one feeding him and has done so until today.

I was very frustrated and an emotional wreck over the feeding. I was very worried he wasn't getting enough nutrients, not enough liquds (risk of dehydration). I would record down how many ounces he drank, at what times, when he vomitted, roughly how much he expelled etc. On bad days, I would check his fontanelle, eyes and diaper (for signs of dehydration).

I didn't know back then that it's due to his CP. His diagnosis of CP came only when he was 2yrs 8mths old and it was only about a year after that I read about feeding issues for CP kids.

Eventually, and very very slowly, and through painful trials and errors, we came up with a very strictly timed feeding schedule. He had to be fed a certain number of ounces at specific times, and we could only vary from that specified time by 10min or so. That way, his feeds managed to stay down, most of the time.

That was when he was on pure liquid (milk). Needless to say, weaning him onto solids was another long trial and error process! 

Now he eats well (compared to how we started off). He loves homemade pizza, spaghetti, cous cous, pasta bake, KFC (sigh!), burger, beef ball noodles, nasi lemak (without nuts, bilis, sambal), roti telur. His portion is a lot less than his peers (maybe 75-50% less), so we still top up with Pediasure milk. He gets tired from chewing quickly so we give hard and dry items at the start of the meal.

Much progress has been made on what he can eat but he still has some oral sensitivities in relation to food for e.g. doesnt like ice cream (cold).

Sunday, March 7, 2010

Been busy lately

Sorry for not being able to update my blog on a daily basis like before. I've been very busy lately.

On the homefront, I've been re-organising stuff, cleaning, labelling, decluttering and fixing things. I've not had such a major 'spring cleaning' exercise...ever. It's spanned several months but the intensity picked up lately. He slept well most nights so that gave me the clarity and energy to get things done fast. I had only a few errands to run last week, so I was able to spend more time with my son too.

My new helper arrives later this week but will spend a few days at the agency. I've been very nervous about the changeover and try to redirect that nervous energy into cleaning, tidying etc. With the impending changeover, I also had to sort out related administrative matters.

On the therapy front, he has resumed his routine of CST therapy, and NeuroSuit therapy. I try to squeeze in one OT activity in a day.  It's usually a transferring activity - eg. use spoon to transfer rubber tree seeds from one container to another. At school, he gets his writing practice so I dont do it at home.

I've started to take him to the park in the evenings, weather permitting. If I've to run errands, I try to choose to go to the mall where there's air conditioning. I kill two birds with one stone - he runs or pushes the trolley, in the mall with his Neurosuit on.

We go to KizSports once or twice a week, also with his NeuroSuit on. I'm trying to increase it to twice a week cos it's just too hot nowadays. This is when I get to fully utilise my membership benefits!

Now that I'm spending more time with him again, and I'm less stressed and he gets back into his old routine (he loves parks and KizSports), he screams and whines less at home. He's generally more "agreeable" at home. I think that's also translated to less disruptive behaviour in school.

I'm praying that he copes well with the change in helper. My current helper has been his secondary carer since he was 4mths old. So, it'll be a big change for him (and us). He has already said that he'll miss her.

Monday, March 1, 2010

PSG's visit to Domino's Pizza

FGA's Parent Support Group had organised an outing for the members, last Saturday morning, to visit Domino's Pizza to see how pizza is made. It was a good outing. My son saw the process first hand from how the pre-kneaded dough was formed into a base for pizza to slicing the pizza in the delivery box. I remembered to bring my camera this time but it ran out of battery when I took the first shot! LOL

Prior to the trip, I had gone into YouTube to show him a video of the process (search for "making domino's pizza). I did that because I wanted to build up some excitement for the visit, and to prepare him on what to expect. You see, if he were in a crowded shop waiting for something to happen, but not know what to anticipate, he is unlikely to be able to wait patiently. That's especially so if the noise level is high, which is likely as people's voices bounce off the walls of a confined space.

Thankfully, he didnt kick up a fuss while waiting for the "tour" to start, even though the place was a bit small, with many people talking, and with some people moving around. I think it was because he was distracted by the "shower cap" that had to be worn for hygiene reasons. He felt uncomfortable with that cap on and pulled it off many times (sensory issue?).

He didnt want to try to knead the dough into a pizza base or place the toppings or sprinkle the cheese. It would have been a good OT activity for him. But he was rather short for the worktable so I didnt push it. But he did agree to my suggestion to use playdough when we got home, to make pretend pizza.

He was rather focused on watching the pizza, very slowly, move under the heating elements (it was placed on a wire grille that moved mechanically past the heating elements). I guess his love for cars isn't confined to just vehicles, but to things that move in general! LOL.

We were offered the baked pizza but he didnt want any. The smell of freshly baked pizza was sooo tempting, but I didnt have any either cos I was having low grade food poisoning (again!). I was in fact, a bit hesistant to go for the visit that morning, in case I had an urgent need for the toilet, but the medicine helped (at least until I got home).

We left early cos my son did a poo-poo in his diapers and it would have been too much of a hassle to clean him up in the toilet there. I do wish we got a breakthrough in getting him to poo in the toilet. It'd be much easier when we're out and about on such trips.

When we got home, I did a follow up activity with him using playdough. He did try to knead it into a pizza base but used his pointer finger instead of his whole hand. I'll need to do more activities that require him to open his palm. I was the one who made pretend toppings, but he placed them on the pizza. I didnt mind that cos I wanted him to break the habit of pinching off tiny bits of playdough and scattering them about. I helped him to slice the pizza with a normal play knife, and then he tried it himself, which is good.

I would like him to put the toppings on a store bought frozen pizza base, and help place it in the oven. I think my helper had done that with him in last year, but I'm not sure. I think he'll like that - to be able to "cook" and eat his creation - so I'll try it next month.