A new chapter, a huge milestone

On the first day of school, moments before... (Apple iPhone 4s)

My younger son started primary 1 in January this year like all the other seven-year-olds except that he is already eight. If you are wondering why, that's because he has a language and speech developmental delay and that would have made it challenging for him to cope in class. If you met him in person, he is also rather tiny (apart from being skinny) compared to his peers, or so I thought.

Out of the 12 pupils in his class, I could roughly point out that at least a three quarter is in the same ballpark size-wise, if not smaller. Despite the physique, I'm quite sure he can stand up for himself as he is feisty and strong but only time will tell if he is able to cope with the challenges that primary 1 presents. Take this for starters; there are seven books for Math and eight for Science alone. I haven't touched on the other subjects. One thing for sure, he will have to make full use of the locker that's provided to him, as lugging around the bag (even on wheels) can be a bad idea. Getting him to work the padlock could be a potential issue as well but I supposed this takes practice.

In 2008 while still in the UK, the original diagnosis was global developmental delay and it came from the lead consultant psychologist, who led a team of specialists attending to his case. In his opinion, there was between 2 to 2.5 years of delay. Additionally, he would not rule out Asperger syndrome just yet until a proper assessment could confirm that he was not suffering from the said disorder, which is basically an autism spectrum disorder. According to Wikipedia:

The term autism spectrum disorder is often used to describe disorders that are currently classified as pervasive developmental disorders. Pervasive developmental disorders include autism, Asperger syndrome, Childhood disintegrative disorder, Rett syndrome and Pervasive Developmental Disorder not otherwise specified. These disorders are typically characterized by social deficits, communication difficulties, stereotyped or repetitive behaviors and interests, and/or cognitive delays. Although these diagnoses share some common features, individuals with these disorders are thought to be "on the spectrum" because of differences in severity across these domains.

Our attention first got flagged down by the good nursery teacher who alerted us that he was not conversing well in class. Communicating with friends was a combination of toddler-speak and physical signs, if you may. Never in full words, let alone proper sentences. 'He's only four, he will step up will he not?' I said half assuringly, primarily because I've been fed with that my whole life.

Who hasn't heard of 'alah, budak lelaki memang lambat sikit' (boys are usually slower) or 'esok lusa nanti pandailah cakap'? (he will catch up sooner or later?) Our elders would offer these phrases to generally describe children, although boys are said to always catch the last bus to development compared to girls, who are a little behind in talking or walking than should have.

The teacher as a matter of different culture and upbringing was not having any of that. She retorted by saying that all his peers were performing at the expected level. She added that it was the parents' responsibility to make sure their children develop properly and if they don't, identify what the issues were and address them accordingly. Without as much waiting for a week to pass, she forwarded our case to the school's Special Education Needs (SEN) unit's attention so that the machinery could get to work immediately. The end game was single-minded: to get the council's approval for a proper and carefully-designed treatment plan for our son. What happened next was a series of assessments and evaluations that saw us hopping from one specialist to another with the little one trotting along. ENT, speech and language, pediatric development, child psychologist, you name it, we'd done it. We did not make it to the ophthalmologist though because we just couldn't secure a date before our final flight home.

The central idea of having him checked in all the various disciplines was so we could safely eliminate or include a condition in order to form an accurate diagnosis and thence, a prescription or the said treatment plan. Once endorsed by the local council, the school would have to abide by the treatment plan as proposed in the statement. Council officers would make their periodic checks and monitor his progress. The system's in place to make sure that special children are being taken care of. Unfortunately, he did not get assessed for Asperger as our time was already up to return to Malaysia.

Despite having all the reports, our local consultant pediatrician reduced the diagnosis from global developmental delay to only language and speech developmental delay. She was convinced that autism and dyslexia or any other type of learning disorder was not in order and that included Asperger. Because of this, we haven't sent him for further checking.

My son did not attend primary 1 when he was supposed to as a seven-year-old  but instead enrolled into a Montessori-based kindergarten in Sunway Damansara which was strongly recommended by his pediatrician. The kindie had a very small student population of the same stature, for want of a better word, and so it would provide the kind of attention that my son would have required. 

With some of the other pupils at the Sunway Damansara kindie. (Apple iPhone 4s)

As part of the mainstream school's procedure, every new joiner would need to sit for a readiness test to determine his intelligence level so that he can be accorded the adequate support. Much to my pleasant surprise, he passed the test with little problem, meaning he’s qualified to join the school. He fared very well in Math and English but did poorly in BM. In fact, he turned in a blank paper which was not surprising because he’s only started to pick up the language recently then. But perhaps for practical reasons, the school management had requested that we write a letter to indemnify them of any responsibility towards his development should it not rise to the occasion the way it should be. And to be fair to the school, its teaching staff are not trained to educate or develop children like him so I could only expect so much.

The aunt and my other half, waiting for the transporter to arrive. This was first day at school. (Apple iPhone 4s)

He's a big boy now. The Mickey Mouse bag was his own choice. (Apple iPhone 4s)

But why did we choose the school over the others? There are two reasons. Our son is a special child who still does not know how to look after himself and does not understand danger. He needs help getting off the transporter safely, finding his way to class, making sure he pulls his bag along while doing that, taking the same transporter back after school and if it’s PE day, ensure that he puts on his shoe the right way, not with the tongue all curled inside. His brother goes to the same school and with him around, he could at least lend assistance where necessary and practicable. It will do both of them a world of good, while bonding as brothers as well as instilling that sense of responsibility in the elder one. That’s reason one.

With his bro. Note the difference in height. (Apple iPhone 4s)

Secondly, we feel that the school allows us to communicate with each other in a much more proactive way with its online parent dashboard, daily emails and periodic engagement sessions. We want to have easy and quick access to the educators, without much bureaucracy and formality.

To supplement his formal education at school, we are having the same teacher from the Montessori-based school come in on a weekly basis to provide him with the one-on-one intervention, as advised by his consultant pediatrician. Actually it was her professional opinion and recommendation that my son should be ready for mainstream school this year and more importantly, not miss out on his social growth and development which only a school is guaranteed to provide for.

In addition to school and the intervention programme, he had also been attending speech therapy and recently music therapy. At the moment, it’s early days to tell if the latter therapy is going to work out but I can see that he is really enthused by it. We know him as the reports suggest to be having high non-verbal skills and through our observation, he is inclined towards sound and rhythm and whenever he breaks into a dance move, it is always on-key. Seriously. We are just hoping that he can be developed further in that department. 

As a boy, he does have his temper flares and would exhibit them whenever they are triggered and those around who do not know better would surmise it as overacting. He is very demanding and can be very relentless with his demands too. But he is kind-hearted, loving, loves books (although he can’t read properly yet), friendly, talkative, at times funny, never fails to say thank you, smart in his own way and very, very sensitive. So sensitive that his mood could change before you could blink your eye.  That is my son that I know.

Come to think of it, he could come across like most children but when you get to know him personally, you will see that he could really use a lot of care, help and attention. Communicating in a format that everyone can understand is not something that you could count on him doing so he may not be able to ask for help when he really needs it. And because of his sensitive nature, he could have second thoughts about going to school if he experienced something that may be normal to the other kids but not to him. At the moment, getting him up in the morning can be challenging at times but I don’t know if that will change soon.

Yesterday, he came home from school beaming, showing off his BM spelling test to his aunt and mum later towards the end of the day. The score was 4/10 but it was a big deal to him. He went to town about how the teacher praised him in class. Today, clutched in his hands from when the bell rang time until home was a simple but neatly coloured drawing that had earned him four stars. And that was awarded by his English teacher who mind you until a week ago or so had been quite demanding and insistent that he performed like the others in his class. Like my other half and I have always stressed to the ever-dedicated teachers, we are not expecting him to be a top student in the class, not now and not in the future. We just want him to enjoy school, make friends and get that slice of life that could have a magical effect on his growing up years. The excitement elicited from the average spelling score and the rapacious grip on the drawing that I think got helped by the teacher just go to show that motivation and encouragement would mean the world to him. But for now, having survived at school thus far is his first big milestone indeed.