Our Peaceful Journey....

Pweshes Philosophy on Autism

2010-11-02T23:58:00.002+08:00

I do not see autism as a permanent disability but rather a permanent difference.

Autistic children are not inferior to typical children. They may lack some qualities that typical children have, but at the same time, they possess amazing and advanced qualities that surpass not only their peers but surprisingly, even some adults. Hence, they just have different milestones when compared with typical children.

Typical children are not necessarily cleverer than autistic children. It's just that autistic children learn things in a different way compared to typical children.

I seek therapy to reduce the disabilities caused by autism, that I see are hindering my child from reaching his full potential. That is the journey that I talk of, the progress that I chart, and in no circumstances do I intend to make him or want him to be non-autistic.

I unconditionally and wholeheartedly accept Raiyan to have autism because on a large scale, that is what makes him who he is. However, it is through this journey and the progress that he makes, that has allowed me and others who know him, to learn, understand, accept and appreciate him better for who he is. He may be different from typical children when you first meet him but spend no longer than a day with him and I would be surprised if you don't think he is less than wonderful.

I hope Raiyan can help to change the stereotype perception that Brunei has on autism now which I have found to be outdated, misguided, depressing and unhelpful.

It cannot be denied that autistic children need urgent help. This should be dealt with early, quickly and intensively and in accordance with a properly managed programme based on scientific evidence.

However, just because they need help does not mean they should be looked down upon and be viewed with nothing but sympathy. Though we appreciate you applauding them for being able to sing, read or act in certain ways that you didn't think they can do, please also know that such praise may be patronizing for some of them because you can be amazed with some of the things they can do. Because autism is a spectrum, get to know the individual autistic child first before you judge him or her based on the stereotype perception that you may have.
With the alarming rising rates of autism, it is high time society start understanding what autism is and start being accepting and tolerant.

I hope they can do so through reading about Raiyan, a certified child with autism, living and growing here in Brunei.

Ultimately, I hope Raiyan can help represent a new generation of autistic children that this country have not only accepted wholeheartedly into mainstream society but is proud to say is one of theirs.

Literal Mind

2009-11-07T23:27:00.000+08:00

Raiyan wanted me to put on his new Transformers DVD (which has now taken over Dinasours as his new interest) into my laptop. I was ONLY trying to impress him with my new Macbook Pro which has a CD slot where you just put the DVD in and it automatically sucks it up (instead of the conventional way of you pushing the DVD in). But still I forget sometimes of Raiyan's literal way of thinking cause as soon as I said "watch my computer eat up the DVD Raiyan", he let out this loud wail and started crying! So I asked him why and he said "Now my DVD has broken up in little pieces because the computer eat it up!"

WHHOOOPPPSSS!

Indistinguishable?

2009-10-26T21:18:00.000+08:00

Okay, now that I've gotten that confessional side of me out of the way, I shall just dive in and inform all of you on how Raiyan is doing.

Raiyan is doing absolutely great!! Jeff and I attended a parent-teacher meeting thingy about 3 weeks back and after our initial apprehension of being on the receiving end of continuous complaints of Raiyan's autonomousity (is there even such a word?) or more specifically his tendency to not listen to others, we were more than pleasantly surprised that though he still does that at times, it is in no way at a worrying state, AND his competence in learning far outweighs that particular fault of his. Jeff and I thoroughly enjoyed every minute of our 2 hour consultation with all of Raiyan's teachers. And I'm not exaggerating here folks, BUT at least 2 teachers particularly said the controversial word: That Raiyan is now "indistinguishable".

I know ABA gets a lot of flack from the autism acceptance community because it apparently strives to make the autistic child ultimately look "normal" and therefore you could argue, "indistinguishable" from his peers. Now, if you have been an ardent follower of this blog from when it first started in January 2008, you would know that I never had such intentions when Raiyan first embarked on his ABA journey. All I ever dreamt of for my baby boy was for him to be able to communicate with others and to form meaningful relationships. Though we were committed to work on his behaviour (tantrums, stims, no eye contact, lack of social skills), they were hardly a priority for us as all I ever really wanted was to be able to have a conversation with him.

Now, we know Raiyan has gone beyond that point when Kerri informed us some months back that all his basic language are in place and what is left is for him to utilise them appropriately, together with acquiring appropriate behavioural and social skills.

So how did I feel when the teachers mentioned the word "indistinguishable?"

For starters, I felt relief because I have always been worried about Raiyan bringing too much attention to himself to the point that the teacher might single him out for whatever reason and he may need to be reprimanded. There have been times in the past where Raiyan was attracting such negative attention that there were points where we felt we were being cornered out of the school! So to know that the teachers were not more worried about him than the next child is indeed a major relief;
Disbelief. I still constantly worry about Raiyan. Admittedly, not as much as I did 18 months ago but I am still worried about him not being able to progress and attain the next level he is expected to. I guess being a parent, and not just a special needs parent, will always cause me to have that little "uri" (worry in malay) voice at the back of my head. So even if I kept hearing the teacher saying Raiyan is indistinguishable, I think at this point I am still choosing to not believe it so much only because I don't ever want to get complacent about it all.
Proud. I know for a fact but cannot possibly describe into words how hard Raiyan and his therapists have worked this past 22 months. So I believe the compliment of being called "indistinguishable" is a testament to the extraordinary efforts that have been put on by all of us as a team but especially Raiyan, Kerri and Jo to get him to where he is now.
Confused (?!) and I think this is what relates most to my long hiatus in blogging- HOW am I supposed to write about Raiyan and his autism when apparently, he is behaving not much different than the next boy in his class?

In the end, all I can take away is an "opinion" of his teachers and technically and strictly speaking this by no way means that Raiyan is no longer autistic. The fact that remains is that he is still going for his 4* a week ABA therapy, we are still constantly working on his social skills, we are still working on him expressing his emotions better, we are still needing to take double or even triple the time to explain him something new, which typical children can understand straight away.... and for the most logical reason, his autism spectrum disorder diagnosis dated 8th January 2008 still stands and the only way to once and for all "undo" that diagnosis (IF he is indeed indistinguishable) is to have him re-diagnosed which we still don't feel quite ready to do just yet. (We are however planning for one sometime next year).

The point is, I have loooonnnnnngggg accepted Raiyan to have autism and what's more than that, I have loooonnnggg been grateful that he has it because as cliche as it sounds, our family's lives have simply been so much richer and more meaningful ever since it touched us and entered our lives. So YES, everyone who meets Raiyan for the first time would most probably have NO CLUE that he is autistic. And so, it would be easy for us to hide it and act that Raiyan is a typical boy.

But I just can't do that. Raiyan is where he is now with autism playing a part along the way. It HAS OBVIOUSLY been a part of him all these years. I don't know how much it's a part of him now but I don't doubt it's still there. At the same time, I am not at all certain how much it will be a part of him in the future. All I am saying is it doesn't matter. Raiyan is Raiyan and I welcome you to continue reading about him in whatever way you want to view him.

Why I have not written more

2009-10-26T20:39:00.000+08:00

I just don't understand why it is so difficult for me to update this blog more frequently. Sometimes I aspire to write a post much like how I used to write them a long time ago - a post that specifically focuses on one topic but of course with much depth. But I think I soon realised that I have to concede to such dreams as:

1. Raiyan's progress lately has not been as much of a big leap compared to how it was like before so there is not much to write in one post about one particular progress. For example, I can't exactly write a whole long post about him now being able to acquire new words for emotions in one week. I mean I could but...

2. Okay it's more due to my own fault in not really taking the time out and being more introspective into it all. What else can I say but it's hard! Now that Alisha has started playschool, she is talking more and she fights for my attention as much as Raiyan. And don't even start on Addin! The boy is constantly jumping and leaping and rolling about literally just to get my attention!

Suffice to say, I have abandoned my need to maintain a certain quality in my writing if it means I can be more frequent with my simple but informative updates about Raiyan's progress! THIS ironically coming at a time when Raiyan's grandmother (and my mother) had just recently won the prestigious South East Asian Writer's Award for Brunei Darussalam! I apologise in advance to my mother in the slight decrease in "thought" placed behind my writing but at this point, I really have to place more emphasis on specifically Raiyan's progress rather than the "pretty" way I write about it.

I don't even know why I felt the need to let you all know about this but I feel better that I have. Plus at least now there is a new post! Hahah!

Listening and looking... again.. and again...

2009-09-18T13:47:00.001+08:00

Time flies so fast these days and I really can't believe I haven't posted about Raiyan for almost a month! This post is definitely long overdue so I thought I'd just sit myself down finally and update all my readers about Raiyan's progress.

Overall, Raiyan has been doing well. In school, he still has Jo support him in some of his classes and though he is coping well with the work, the main problem with him as conveyed to us by his teacher is still his tendency to switch off, tune out and not listen to what she is saying. This, along with him not looking at the person he is talking to so has clearly been a problem for his class teacher to handle. Another difficulty in class is also his need to be prompted to finish his task and how he needs constant remindings to carry on doing his work until he's finished. As usual, what Raiyan tends to do is to start on some, then switch off and start turning to something else he's interested in. I have to stress that this is not a huge problem but it is part of the work in progress that we have to do with him so that he is able to keep up with the rest of the class well.

Outside school, Raiyan is still having ABA sessions with Kerri once every 2 weeks and Jo 3 times a week and the things we are concentrating on are (well apart from constantly making him look and listen):

1. Continuing on with verbalising clues: He is getting much better with this and he is coming up with some very good independent answers. Of course with his special mind, some of the answers that he comes up with can be bizarre but the things is, they are not necessarily wrong! They are just things that doesn't occur to us immediately. And at the same time, things that seem natural to us, Raiyan simply doesn't get! It just shows how deeply analytical his mind can be and he would rather see the more difficult point rather than the straightforward one.

2. Maths: Of course this is to help supplement what he is doing in school. Though Raiyan can do simple sums with his fingers and in his head, we are trying to go further and make him understand the use of the numbers and not just simply count and memorise. For example, we want him to know instantly that 2 + 5 is the same as 5 + 2. Raiyan was also having difficulties with the different descriptions used such as plus, add on, more than, minus, subtract, take away etc etc. He is fairly familiar with them all now but he still gets confused and that delays the instantaneous answers we sometimes seek from him.

3. Money: Hand in hand with maths (or so we think), we are trying to familiarise him with coins (which was something I had tried to start with a while ago but it was just too difficult at that point so we gave it up for a while). We decide to pick it up again since it is something that he is doing in school (who makes it more confusing by making the children learn BRITISH coins on top of Bruneian coins!). So far, we have started with 1 cent, 5 cent, 10 cent to make up 20 cent or 50 cent coins. This was very challenging for Raiyan again at the start because he just couldn't get the concept of a single 5 cent coin making up 5 one cent coins (with him being so visual he needs to SEE the five separate coins for him to think it is 5). There was even a point when he looked at the DATE on the coin and thought THAT was the value of the coin! Of course we were like "nooooo.. don't make it more complicated than it already is!"

4. Emotions: This is another thing that we haven't done in a while, so lately he has gone back to the basic emotions of happy, angry and sad only whenever asked how somebody feels. We need him to learn a much wider range for him to help him with his comprehension and composition work. Kerri gave a box of emotion picture cards for us to work on and I'm also keen to use the "moods" application on my iPhone which has a wide range of smiley faces characters displaying many different types of emotions. Already in the car just now, he reacquainted himself with "annoyed", "irritated" and "disappointed" which are all the types of feelings he feels when Addin takes his toys away!

So these are the work areas that Raiyan is focusing right now along with being constantly reminded to listen and look when someone is talking to him and when he is talking to someone. When I think he wasn't listening, I would ask him "what did I just say?" and make him repeat what I just said. Also, if I know he's not listening, I'll just stop talking abruptly and then there will be an awkward silence and then he will realise that something went wrong and that's why I stopped talking.

To improve on his looking, we also keep playing the "looking game" where he has to look at my "face" (because looking in the eye is difficult for them) for as long as he can. His record at the moment stands at FORTY seconds, with his eyes not leaving my face at all! What he does instead is look at my eye, then move a bit to my nose or my mouth and then look back at my eye and to me that's really good already!

As for independence skills, he can go to the toilet and wash himself already, he can take a shower and change his clothes by himself to, he eats at the dinner table at all times and the best news of all (well for me anyway) is that he has finally stopped stroking my elbow when he is about to go to sleep!!

Syukur alhalmdulillah for all the progress Raiyan has made this past 20 months! Will keep everyone posted, promise!

What did you do in school today Raiyan?

2009-08-28T12:45:00.005+08:00

Finally, Raiyan is starting to be able to tell us what he does in the school day. All this time, it was soooo difficult to elicit any type of response whenever I asked him simply "what did you do in school today Raiyan?". I soon realised that my question was too big, too vague and Raiyan just did not know how to answer it and not so much he did not know what the answer was. This was similar to us always asking him who he played with in school. At first, we just could not understand what was so hard for him to give us the names of the children he played with because we know for a fact (from Jo who sits in with him in school) that he does play with other children. What we discovered we had to do was to specifically ask something and to do it on a step by step basis.

So first we ask: Did you play with friends today? [Yes]

Next: How many friends did you play with? [Stuck - because he still thinks this is too big and it will take time for him to count all the friends he had played with]

Try again: Did you play with friends during breaktime today? [Yes]

Next try: How many friends did you play with during breaktime? [2]

Next and finally ask: Who are the friends you played with during breaktime? [ "him" and "him"!]

We can then also further ask if he played with other friends in the classroom or during any other time during the day and he would answer different friend. All of these just goes to show how important it is to ask "leading questions" whenever necessary to get him to what we expect him to answer and then once he's in that place, it's then easier to ask him other related questions!

So when it comes to what he did in school, we are using this similar pattern of questioning too by starting with something simple like asking the "subjects" he had sat in which he can do as they are more or less the same subjects he sat in Year 1 so he is already familiar with them. So I would ask him my favourite question of the day and he would just list the class timetable of the day in the order he sat through them - literacy, snacktime, numeracy, ICT, music and swimming. After that, I could be more specific and ask him what he did in ICT and he'd say he clicked on the computer to open a folder and he did some colouring etc But now he can even volunteer to say more like just now, he told me how he clicked his folder and then it was empty and Mr. Want was telling him something he didn't understand!

We are also really happy to hear that Mrs R, his class teacher has been nothing less than great. She seems to be really interested to know and learn the ways to communicate with Raiyan and to get him to follow her instructions. I've also witnessed myself her communicating something with Raiyan in a systematic way just on the second day of school! When Raiyan was checking with her if there is ICT today, I saw her tell Raiyan "Yes, but we have assembly, then numeracy and then snacktime and then library and then we have ICT" :D

Looking forward to hearing more about Raiyan's days in schools from now on!

Good Idea Raiyan!

2009-08-25T16:47:00.002+08:00

Raiyan has begun to notice the roadkills we often see on the road and is getting especially worried about having to see quite a few in just one week. So yesterday, he turned around and asked me,"Is there no traffic lights for animals? Like for people to cross the streets?" Of course I said, unfortunately there isn't any for animals and traffic lights are around only for cars and for people. Then he asks "but why not? otherwise the cars will knock them when they cross the street!" I didn't know what else to say but "I guess no one has thought about building traffic lights for animals!' to which Raiyan then said "well, when I'm bigger and have more money, I will build traffic lights for animals too!"

Fake Raiyan?

2009-08-21T08:04:00.003+08:00

Over the holidays, we have been trying to widen Raiyan's interests beyond just his obsessions with dinasours and animals, as we kept telling him that not everyone are into those things as much as he does and if he wants to keep a conversation with other children, he needs to be able to talk about other things too. We have tried to make him watch "Ben 10" (which I believe would be the "in" thing with boys nowadays?) and I have to commend him for trying but somehow after a couple of tries, he still couldn't get into it.

But the one "cool" thing that my sister did manage to sustain his interest in was "Transformers" and she actually made him sit down with him through the whole DVD playing of the movie. Admittedly, he was a slightly hesitant in the beginning but after a while, and especially since there was some form of correlation with dinasours with them transforming into something that looks like them, he really did seem to enjoy the whole movie and he even acquainted himself with some of the characters' names. However, between that time and this week when he started school, it still wasn't something that we saw he reeeaalllyy liked as once he got home, he still got back to his dinos and animals stuffs.

But Jo told us that on the first day of school this week, Raiyan was striking a conversation with the boy sitting next to him and I guess he figured that dinosaurs was not a common interest so instead, he actually started using the talking points on transformers that my sister shared with him while they were watching the movie! And then, there they were, actually having a "real" conversation about transformers! :-)

It was so funny cause Jo was just listening in the corner thinking "oh my, these are all lies! lies! hahaha!" Well of course they are not "completely" lies but we do know that he doesn't love transformers as much as he sounded! We can't help but be so proud of him as he really did work hard during all the social skills sessions Kerri organised over the holidays. And we're so grateful that he is able to recognise it when another child is bored or disinterested in what he is saying and not only is he okay with that but he actually is beginning to handle the situation better by adjusting his actions - something we hardly imagined he can do! It seems so contradictory in nature for Raiyan to have autism and at the same time have this innate need to please people (which is not at all surprising with both his parents having that same nature!) but I think it could act as a double edge sword. On one hand, it is helping his social skills at a faster rate than we expected and we are truly surprised that he has reached a point of knowing to be "fake" to please the person he is talking to, which is undeniably a basic and common difficulty for individuals with autism. But at the same time, I do get worried since I know how difficult it is for him to do this, that he might get too guilty for not being able to please everyone. I already see this happening when he gets really upset if I tell him off for something or when a friend ignores him. I think I really need to be conscious to not make him feel like he needs to please people all the time - which I'm sure is an alien thing with him since ALL he has been doing for the past 20 months is pleasing us with all his achievements! I guess this is another chapter in our journey of balancing autism and the world that we have to be aware of.

In the meantime, can anyone suggest what other "cool" topics Raiyan can talk to his friends and be "fake" about? heehee...

Countdown to school

2009-08-16T21:35:00.003+08:00

Raiyan is starting Year 2 (!!) in a few days time and similar to what we did last year, with it being a whole new classroom and a new teacher, we brought him round to school about a week earlier to do an advanced going around to familiarise himself with his new surroundings.

As some of you may remember, Raiyan's start to Year 1 last year did not run smoothly. Though the change in environment he already accepted because we had already done the early rounds, he was still disturbed by the change in timetable, change in classmates and most of all the change in "rules". For example, in Reception (the year before Year 1), he had to take his shoes off outside the class and also when he's about to go into the sandpit but somehow for Year 1, he didn't have to! There were also different rules about going to the toilet along with so many others that you can't help but just put down to some of the teachers' individual preferences. So to put a long story short, the rocky start to Raiyan's Year 1 really struck a chord with all of us caregivers and therapists that we are trying very hard to not let it happen again.

So we've brought him round to school twice already. the first time was just to know where his new class was, to take a look around the inside of his new class and also to meet his lovely new teacher for Year 2. We are especially grateful to the school for allowing Raiyan to do this and especially to Mrs R, the teacher for taking the time out of a very busy schedule I'm sure, to spend some time with Raiyan in the class. The second time, Kerri advised we take him in wearing his school uniform complete with his school bag and snack bag and this time, we even sat down to have a snack (which incidentally IS different as in Year 1, they had their snacks outside the class but now in Year 2, they eat inside!).

We are so happy to report that Raiyan was fantastic with all the change. He has really come to a point now that as long as we warn him earlier of what is coming, he really takes in changes and new environments in stride. Of course it is admittedly an added effort on our part to every time have a long drawn talk with him before we leave the house to say EXACTLY where we are going to go (and also repeating it again and again every time he asks along the way in the car! WHICH, if he sees us using a different route than he's used to, he will INCESSANTLY do until he's really convinced we are going to the same place!).

Mrs R has been really excellent so far as well and already we can see how well she is able to converse with him and she is quickly catching on stuff we have to constantly work on with Raiyan which is, keeping his voice low, not interrupting people when they are talking, looking in the eye of the person he is talking to and sharing his toys. Because we have been consistently encouraging all of this at home, it's really vital that it be the same in school too.

So school starts this Wednesday and we are taking him to school one more time on Tuesday like how we did this week. All of us are still awfully nervous though we are feeling slightly more positive after the good early runs so far...

Wish Raiyan lots and lots of luck! Will keep you all posted!!

Updates, after what felt like an eternity!

2009-08-04T22:36:00.007+08:00

I've been whisked away to the other side of the world for work purposes, yet again, for the past five weeks and naturally have not been closely following Raiyan's ABA programme, which I feel so very guilty about. As guilty as I am about having neglected this blog for more than a month. So this post is indeed long overdue and yet again, here I am promising more frequent updates from now as hopefully I will be staying put for at least 2 months!

Of course, I'm not going to kid myself and write a long post about Raiyan's development for the last 5 weeks because apart from the mini notes courtesy of Jo, I really have no idea. I do know however from his ABA file the areas that Raiyan has been working on (some of them are actually those carried over from the last session I had sat on which I'm happy to see as at least I'm familiar with them). As I might have mentioned in a previous post, Raiyan's basic language is in place, so the focus now is to expand his descriptive language, his vocabulary and his imagination and in turn his understanding and general knowledge of things around him. His current programme consists of the following:

Comprehending and verbalising visual clues - We still have many copies of this activity to go through where we ask Raiyan various questions about a picture and make him explain his answer. Eg. if there is a picture of a girl picking flowers, we can ask Raiyan "Have the girls picked the flowers?" (which of course Raiyan would simply say "yes" to), then we ask "How do you know?" which hopefully Raiyan will answer "because the flowers are in her hands". It may be simple to you and me but this was very tricky for Raiyan in the beginning. Alhamdulillah, he has improved on this so much and he is applying this more in a natural scenario too;
Phonics - Using the Jolly Phonics book, Raiyan has managed to learn all the actions and exact sounds to make according to all the phonics. As we know, Raiyan was an early reader with him reading up to level 6 of the Peter and Jane books at 3 years old. But he did this through his extraordinary memory rather than knowing to the exact pronounication of the words or letters he sees. That is why when it came to writing independently, he would often ask us how to spell the words he hasn't managed to memorise yet and would not even attempt to spell it using the sounds the words make. So hopefully once he knows what letters and combination of letters make what sounds, he will be more confident to spell words independently;
Time - so far, he can tell time on the hour and on the half hour. Now we are working on 1/4 past the hour and 1/4 to the hour;
General knowledge - now he is learning what things are made of and this has extended to things around him and more than those that are listed in the activity sheets;
Story writing - we brainstorm short stories together and then eventually, Raiyan will write them down. After that, we can match the writings up with pictures and decorations and make it look like a proper book. Actually, Raiyan already did something like this over the Easter holidays but with a lot of support from Jo. I will try to post pictures of that book very soon!

Okay, that is all I can personally share for now. Tomorrow I'll get to see Kerri myself since Raiyan is having a social skills session at her place in the afternoon so hopefully I can get more detailed information straight from her on how Raiyan is doing! I will update again soon I promise!

Bye Bye Tantrums

2009-06-16T21:11:00.005+08:00

efore he was able to communicate his needs appropriately, Raiyan was infamous for his extremely loud cries. One of my girlfriends also commented how his loud voice was so unique and how it seemed to have different layers and facets too it (like a soprano layer, a bass layer, a tenor layer and a baritone layer if you care to imagine!). It was so loud that we always gave in to his needs as we just couldn’t find a way to make him quite down otherwise. If we happen to be outside and in public the only solution was to just carry him and whisk him back to the car.

Apart from the pain of having to tolerate the volume of his screams, it was far more distressing to feel helpless and not know exactly why he was throwing his fits in the first place. Often, we had to play the guessing game, the elimination game and we had gotten really good with inferences and assumptions by the end of it.

The golden lesson we learnt when he was first diagnosed and when he started his therapy was that we weren’t supposed to pay attention to the tantrums and better still, we completely ignored it. You can imagine Raiyan’s screams practically filled the house non-stop for the first two weeks or so when we employed this new trick. Alhamdulillah after persevering through, his tantrums indeed lessened within time as Raiyan soon realized that he wasn’t getting any reaction out of them. I guess it must have been strange for others to see when we did this in public since it is a natural instinct for parents to talk and console their child to try and make them feel better. As careless and evil as we looked, our faith in the technique grew more and more within time as Raiyan was seen to gradually move away from the excruciatingly loud screams to now a barely heard inside sob accompanied by whines and moans specifically telling us what it is he wants.

He’s been tantrum free for quite a while now that I think we’ve started to take it for granted. So it was a proud moment for Jeff yesterday when he was negotiating with Raiyan about something with another autism parent watching. It was during the social skills group session and Raiyan was instead too busy playing with his dinasours. This was clearly contrary to the purpose of the session so Jeff instructed Raiyan to put the dinasours away – an added challenge was the fact that he was already halfway playing with them (children with autism finds it really hard to suddenly stop something they are in the midst of doing and to shift to another activitiy. That’s why countdowns and advance warnings are very helpful for them). The other parent observed the whole time Jeff was telling Raiyan to pack up his dinasours which Raiyan eventually reluctantly complied with but not without his typical “pathetic” (as Jo and I call it! Hehe!) whines and sobs. And she straight after told Jeff of how impressed she was with Raiyan not really put ting up a protest and how there wasn’t a single shout or scream heard. Even in school, Jo often tells me how a number of teachers found it so hard to believe that Raiyan is the same boy from last year that they remember to be the one rolling around on the library floor screaming just because he couldn’t get to read his animals book.

I am so grateful for all this positive feedback not only because it reminds me of how much he has achieved as I admit, it’s quite easy to take for granted and and to actually think that he has always been like this! It’s also a wonderful thing because we are proving to others that it is possible for tantrums to be substantially reduced or even stopped. I can’t be sure if it was down to the consistent technique that we practiced or if it’s just due to Raiyan being generally obedient in nature. Nonetheless, I am so grateful and proud when I watch old home videos and clearly see what a “far cry” those chaotic tantrum moments were where we had no choice but to just give in to his needs, however irrational and inconvenient they were.

Raiyan and friends

2009-06-14T09:19:00.005+08:00

Raiyan just loves to be around friends. It doesn’t even matter if they are children that he’s familiar with. It’s enough that he sees boys or girls that are around his age and he will attempt to strike up some kind of interplay with them. He usually succeeds in the past year when he does this at the beach or the park as the only games he and the kids would end up playing would be running, chasing and basically games that does not necessarily require verbally conversing maintaining a conversation.

However, it’s not quite the same situation in school and amongst his classmates and he is beginning to realize the increasing challenge of sustaining their interests in him when they choose to not engage in running and chasing and instead are scrummed together chatting and having actual conversations with each other. The sad part is that Raiyan doesn’t quite understand why exactly he’s getting ignored and instead he takes it personally and thinks that the other kids simply don’t like him.

What we try to tell him again and again is that sometimes other children may not want to play running and chasing games or they don’t want to hear him talk about dinasours repeatedly and that’s okay because they simply want to do their own thing just like how he only wants to do his own thing all the time. We try to prove our point further by reminding him that when we tell him to play with the children in whatever they are doing, he in turn says he doesn’t want to because it doesn’t interest him.

He’s getting more and more sensitive about this as just the other day, Jo was telling us about him playing hide and seek with a bunch of boys at school and somehow they forgot to find him and so he was still in hiding until he realized they’ve all left. So he went to Jo and asked “where are my friends?” and Jo pointed them out to be over there and told Raiyan to join them. But Raiyan poutily said “no. I don’t want to. They left me.” (Fortunately on this occasion, one of the boys came over soon after and said “there you are Raiyan! We are waiting for you! Come!” And Raiyan was all smiles again and continued playing with them. Sadly, there are other times which I’ve witnessed myself that Raiyan just gets completely ignored by his friends when he tries to engage them, especially when he starts going on and on about his dinasours and animals).

Hearing of Raiyan’s emotional reaction of being rejected is just too heartbreaking and yet we are also happy that he is finally capable of feeling such emotions. From being somebody who was oblivious to other children and couldn’t care less if there was anybody next to him to play and interact with, to become somebody who clearly possesses a strong desire to be part of the group is utterly and completely bittersweet. When we have to explain his friends’ actions in the simplest terms to him, we can’t help but say things like “but sometimes they just don’t want to play with you or they don’t want to hear about your dinasours and that’s why they are ignoring you” etc which to anyone I’m sure is very hurtful to hear. Having to then sit and watch him crying over what we told him is truly so painful but we just have to remember that this is a good stepping stone for him as it is only through realizing this feeling would he hopefully try and improve on his social skills seeing how important it is for him to have friends.

Kerri has lent me the Social Skills Picture Book (which I have placed in my sidebar) and I’m so overwhelmed with the abundance of social rules that need to be taught. Simple conversation skills that we take for granted and that comes naturally to us really have to be taught step by step in the clearest manner to children with autism. With Raiyan going up into Year 2 soon, there would certainly be more conversational interaction between the children that requires him to listen and respond appropriately at all times so it is indeed timely for us to begin systematically instilling these rules.

As a basic start, I’ve been drilling rules of talking to someone which is:

- To make eye contact

- To have quiet hand and feet

- And to not talk and interrupt while the other person is talking.

Alhamdulillah it is working so far with him making better efforts at doing all of these because he knows that if he does otherwise, this may lead to friends not wanting to play with him. At the same time, I also remind him that when others don’t want to be with him (which at times include me!), he doesn’t have to feel terribly sad about it because it may just mean that they can’t be with him right at that time because they are doing something else and if he just patiently wait and do something else first, they might just come back to him.

I admit that in the past, I was more pressured to carry out pressing on all these social rules for the benefit of others and shamefully I further admit, for myself. It was derived more from my needs for others to not view Raiyan strangely and my dreams of seeing my child accepted and belonging to a group. But I realize when those were my exclusive motives, I always struggled with my own guilt for feeling like as if I’m not happy with who my child is just because he’s not accepted by others. And within time, I stopped relentlessly drilling in him these rules day in and day out and I just decided to leave it to nature and see Raiyan traverse naturally into it according to his own needs and not others. For a while he has been getting away with it well, playing with a new friend at the beach and having a best friend from another class. We can therefore deduce that it was probably during all that time that Raiyan learnt the value of friends which has then culminated in him becoming more insightful with his friends’ actions. But I think we (including Raiyan) have all realized that what he has been doing before this is not enough to sustain the interest of six or seven year olds which would in turn justify the need to relentlessly drill some of the social rules because it really is that necessary if Raiyan really does want to maintain playing together with his friends.

Hopefully with this awareness in Raiyan now, teaching and guiding him in all of the social and behavioural rules will be somewhat easier because Raiyan can now understand why he needs to do them and he would be motivated by his own needs rather than just doing it for the sake of complying with what we tell him to do. And on my part, I am definitely more relaxed in my own so called “needs” because not only am I confident that Raiyan will insyaAllah be able to work through and master the skills we teach him, but I am also positive that friends would actually love to be his friend once they discover what an honest, loyal, gentle, loving, funny and incredibly interesting boy he is!

Can't Argue With Raiyan

2009-06-14T08:54:00.002+08:00

Raiyan was expected to bring an “artifact” to school the other day but it slipped poor babah’s mind as he had to be a single parent again this week with me being away in Singapore. On one of the nights that I was away, babah typically brought the kids out to Hua Ho to spend some quality time together and of course for him to sporadically indulge in solely spoiling them without me putting the strict brakes on.

With Raiyan being all into dinasours now, it was no surprise that he went home with a new bucket of dinasour figurines (to add to his gazillion collections already). The next day, he very casually asked babah if he can take his dinasours to school for “show and tell” . We as his parents are somewhat aware that his class has “show and tell” sessions but weren’t completely sure on what day it was. Impressed with Raiyan’s initiative, babah gave the green light and Raiyan happily lugged his bucket of dinasour figurines to school.

The afterschool report we had received from Jo was just short of hilarious! Apparently, Raiyan had already sensed some level of guilt for talking and breathing dinasours a bit too much before Jo (as I think because Jo would see it more with her spending more time with him in school). So Jo told us of his immediate “uh-oh” look when he saw Jo come into class without a chance of him hiding his dinasours.

Jo: What’s that?

Raiyan: It’s my artifact because we are supposed to bring artifacts to class!

Jo: But Raiyan, that is not at artifact! Artifacts are old things that have been around for a very long time.

Raiyan: But DUH Jo, dinasours are artifacts because they are a million years old!!

HOW CAN YOU ARGUE WITH THAT?! LOL!

Raiyan's first visit to the dentist

2009-05-26T23:04:00.001+08:00

I had a dentist appointment today so babah and I thought that it's high time that Raiyan starts getting his teeth checked too since he's very closely approaching the big boy age of six!

Obviously before the therapy we couldn't imagine bringing him near one- this coming from the fact that he was terrified of new situations, sensitive to be touched (he used to scream endlessly while getting his hair cut) and also sensitive to certain loud noises (just last weekend he spent half of of the time watching Night at the museum 2 covering his ears). Actually brushing his teeth was quite a challenge too as he would never open his mouth wide enough so we always ended up blindly brushing his teeth as we couldn't exactly see his teeth with his mouth closed shut over the toothbrush stick!

For this first time we thought we'd just make him sit on the chair to get a feel of it and to only get his teeth checked. Which lo and behold we are proud to inform that he was completely fine with! Well we did give out loads of information beforehand to prepare him of course.

Look at him happily sitting on the dentist chair ready for his check up!

Do I look cool in these sunglasses mama?

Waiting for the chair to recline back which at first he still got quite nervous about!

Open wide Raiyan! We were surprised to find out that he got 3 permanent molars already! The dentist said that it's quite early since he's not even 6 yet.

Seeing how he seemed fine with just getting his teeth checked out, the dentist thought that he could try going one step further to scale and polish his teeth! Though there was a bit of hesitation at first, but alhamdulillah soon after he was sitting quietly with his teeth scaled away! Look closely! His teeth is actually being scaled- yikers! He's braver than me!

He really didn't like the taste of the polish so of all things that he chose to refuse just now was to rinse his mouth with the mouthwash cause he was scared it would taste the same as the tooth polish. So we gave him water instead but the poor thing has no idea how to spit the water back out! He just did the spitting 'action' with nothing coming out as he's swallowed the water already! It was sad (that he still doesn't know how to spit) and funny at the same time!

So I guess some of you may be amazed at how brave Raiyan was. Altogether I'd have to say that he really did surpass my expectations with how brave he was. But at this juncture I have to confess to there being one catch- the dentist was none other than pweshes babah himself! Hehe! I'm sure that factor helped a lot! :-)

But overall Congratulations Raiyan!

-- Post From My iPhone

Raiyan the Explorer

2009-05-24T22:26:00.000+08:00

This was Raiyan as a dinasour explorer during his school's annual storybook day when students dress up as their favourite book characters. ( Remember last year he came as Mucky Ducky?)

For this year we sort of found out about the day in the last minute so babah didn't really have the time to be laborious about it as he was with the duck costume. So at first we really hoped that Raiyan would just wear the readymade Buzz Lightyear costume his grandma got him all the way from EuroDisney. But unfortunately because of his issue in not wanting to look too different from what he's comfortable with (I guess his love for animals made the mucky ducky costume bearable), he absolutely refused to wear it. Naturally we were disappointed and slightly panicking of what else he could come as. At the same time, babah and I ourselves just felt it to be wrong anyway since he wasn't really into Toy Story and the Buzz character so we felt untrue to Raiyan to make him wear something he's not exactly a fan of..

Thankfully our creative juices started flowing when we realised the usefulness of the explorer set I just got for Raiyan from ELC! Coupled them with grandpa's safari hat from Australia and a dinosaur tshirt from NY's Natural History Museum and taaadaaaa!

Not only was it free (in the sense we didnt hv to buy anything new or particularly costumey which he would probably wear only once or twice at most), it is completely authentic to Raiyan's self and he LOVED wearing it!

And here is Raiyan happily sharing his stuff with his friends. When Anna asked if she can borrow his binoculars, Raiyan sweetly said 'of course you can!'

Sigh.. It's just so lovely to see him so happy like this!!

-- Post From My iPhone

Dinasour Board Game

2009-05-24T22:22:00.001+08:00

This is Raiyan's board game that he made himself! I especially love the part where you move back spaces when you're near T-Rex and move forward when you're near the baby dinasour. When I asked him why Raiyan said 'because the baby dino is cute!'

Oh and of course I was just amazed with the instructions he prepared too! His imagination has really come a long way Alhamdulillah!

The actual board game with circles as spaces! I asked what to use as markers he said to just use a pen and jot through the spaces!

-- Post From My iPhone

Breaking an autism myth

2009-05-14T08:22:00.002+08:00

When I first started learning about autism, one of the things I had read was that autistic persons are not able to profess their love to others in words. Surprisingly, I had accepted that “fact” because at that point I was just content to have Raiyan just talk anyway, so the need for him to tell me he loves me was hardly necessary! Also, I was already comforted with Raiyan’s constant hugs and needs to hold me when he’s about to sleep as signs that he indeed does love his mama.

So I never had any expectations for Raiyan to say on his own initiative the actual words “I love you mama”. All I expected was for him to just reciprocate when I was the one telling him that I love him. Even this was a challenge in itself as in the early days, he would almost always say back “I love you Raiyan” (because of the echolalia) and it took constant remindings for him to eventually respond correctively by saying “I love you mama.”

Now, as you can tell from my recent posts, Raiyan is at such a good place right now and he is constantly amazing all of us with what is going on in that special little head of his. It’s like as if all of the things that he has learnt in the last 17 months are slowly falling into the right places and he seems to have a much clearer understanding of using what has been taught, not only in how he himself uses it but also in how others are using it too.

And yet, I still never expected him to independently say “ I love you” simply because that was one of the “facts” that I have accepted from the start as being a trait of autism.

Until two weeks ago when he has started to say this to me, out of nowhere, just out of the blue, without me initiating it.. the special words “I love you mama” came out of his mouth completely independently. And I really feel and believe he’s saying it because he really means it. My instinct tells me that he probably said this because he’s missing me more lately because I’ve been spending more time at the gym after work but at the same time I also really think because of this “everything falling into place” phenomena that he is going through, Raiyan has finally understood what it means to say “I Love You.”

He’s only ever said it four times in the last 2 weeks which convinces me even more that it is a genuine statement rather than it being a favourite phrase of the week! And I notice that when he says it, along with holding on to a part of my body very tightly, it’s also in this really loving and heartwarming tone that I do not doubt the love that he feels for me. He even had Jo sent me a text message saying “I love you mama, B-) Raiyan” last week!

So for any parent who thinks it’s not possible for their child to say “I Love You” think again! That’s actually just another myth as opposed to a fact in this complex world of autism!

Autism, we need to talk…

2009-05-13T09:38:00.002+08:00

Lately I’ve been feeling kinda guilty about not paying as much attention as I should to autism. I haven’t been as diligent with Raiyan’s programme, I clearly have not been as frequent with updating this blog, I’m so behind in reading other blogs on autism, I haven’t even touched a book on autism in months and my involvement with Learning Ladders Society in helping spread autism awareness has substantially reduced too. It almost seems like if I’m in a relationship with autism, it’s at a point where I’d need to have that “talk” with it and suggest that perhaps we need a “time out” or a “break”.

In all fairness, there are justifications for my neglect that I shall attempt to put forward here. For starters, Raiyan’s programme is not as specific as it was before as now we are meant to do more creative things using natural language, like creating stories together which I am the first to admit I completely lack creativitiy in! Hence, it is not as structured and because of that is trickier to follow through (though there is still no excuse to not do anything!). At the same time, with him progressing well in Year 1, we are spending more time catching up with his school work as every day, he has a new home reader book to go through (where he is now up to level 7!) and every week, there is always at least 2-3 pages of literacy and numeracy home work to complete.

In terms of reading up about autism, I simply haven’t had much time to do so because I’ve been busier with work and I also plead guilty to letting my mind focus more on losing weight at the moment (5.5kg so far!:-)). And lastly with regards to the society, I am less active now since for this year I am no longer a member of the Committee.

Having said all that, there may also be other deep-rooted reasons if I am going to be completely honest. My estrangement with Raiyan’s programme may be also due to my state of comfort or even to an extent, complacency that Raiyan is already doing so well on his own, without having me sit with him and go through his therapy materials with him. He is also constantly occupying himself with some activity and hardly goes beyond his 1.5 hour daily limit of TV that I don’t feel as worried about not engaging him because he’s already engaged himself. If it’s not playing with his blocks, he’s playing with his food basket and setting up his picnic with the teddy bears, or he would be resurrecting his own zoo or Jurassic park with all his animal/dinasour figurines, or he would be drawing and writing up stories in his drawing block or at the very least, he would be playing chase or some interaction game with his siblings and his nannies.

On the whole, it really just boils down to what Jeff and I have recently realized and that is how deeply immersed we actually were with autism last year that it really did seem like we were in a relationship with it! Of course we didn’t have much choice then as there was so much work in trying to get Raiyan to where he is now. But it wasn’t just about Raiyan and his progress. Subconsciously, our minds were filled up with nothing but autism. Our conversations were always to do with stories of autism, be it Raiyan’s, or any other stories we had heard of both from reading about it or seeing it ourselves. Our free time was always spent with some activity on spreading awareness, which to me is great but not when I realize now that the only people who would ever take notice are those that are directly affected by autism themselves and this means that us going that extra mile merely resulted in an overexertion on our parts without there being any fruits to our labour. Also, we realized we were treading on unpleasant grounds by starting to be a tad “oversensitive” with others who we felt didn’t “care” enough about autism and what we had to go through and would often waste time analyzing why people didn’t act a certain way or say a certain thing when we talked about autism. Only to realise, again, that it’s not because others do not care, but it’s because they have no reason to and that is completely normal.

I’ve also actually gotten more and more cynical from reading the endless amounts of articles and blogs about autism especially when the debate over vaccines and recovery come into play. I soon discovered that the more literature I read about autism the more confused I got! So much so that I think that is probably the real reason why I’ve strayed away from reading too many of them (except for teenautism which I’m completely addicted to!).

So during these times of what we feel to be us “cheating” on autism, Jeff and I have been spending more quality time together and not even thinking about autism. We’ve been paying more visits to the cinema, the spa, the gym and have even managed to bring the kids out for a family outing every weekend for the past few months, a luxury that looking back we certainly did not enjoy in 2008. We even managed to get away to Singapore for 5 days with just the two of us and it was absolutely wonderful. I’ve even found myself to once again be able to happily hang out with my girlfriends without any teeny weeny bit of expectation that they should ask me about Raiyan and his autism. In fact just the other day, one of them specifically asked me about autism and its traits and what were Raiyan’s obvious traits etc, and I didn’t even for a second get impatient over the fact that all of this she could have easily found in my blog and instead, rationally and very calmly told her what she needed to know without having that incessant need to go that much further to make sure she gets the WHOLE picture. I know now that is just an impossible feat AND if she does want to know more, she knows where to find me right?!

But the thing is, despite this so called “liberated” feeling I have, I still find that inner voice in me saying “don’t get too comfortable, autism is a lifelong condition and don’t think for a minute that you can free yourself from it blah blah blah” or “are you crazy to slow down your pace? Raiyan’s not completely recovered yet! You should still be hard at work and be in a non-stop action to improve him blah blah blah..”

In some ways I guess these voices are still good to have as they serve as a constant reminder that autism will probably forever play a big part in our lives and that I should never be naïve enough to think that we have overcome things and that we can get back to our normal lives.

But it’s not like I expect to go back to our old “normal” lives. It’s just adjusting to that “new normal” where I try and attain some semblance of our old lives but to also take on board all the life lessons and the challenges that we’ve accumulated this past year. Hopefully we can use them as tools in handling what the future holds for us whilst also preserving our own identities separate and distinct from the autism. That’s not too much to ask is it? :-D

Happy News!

2009-05-12T08:58:00.005+08:00

After exactly 17 months of therapy under Kerri's supervision, I was just beyond ecstatic to be told and confirmed by Kerri that Raiyan's "basic language" is in place. This means that from a place where he was completely unable to converse and was only communicating his needs with hand leading, crying or at best, uttering 1-2 words at most, he now knows and understands the use of "basic language" that has been directly taught to him in the last 17 months, such as:

labeling vocabulary of body parts, rooms of the house, things found in the rooms, things found in places etc etc (nouns)
functions of people, places and things
prepositions (on, under, behind, next to)
what is bigger, smaller, more than, less than
all sorts of verbs like standing, eating, clapping hands etc
what, when, where, why, who questions
how questions
opposites
attributes
adjectives
past, present and future tense
pronouns-he, she, they
you and I
contractions (he's, she'll)

and many more!

Not only can Raiyan converse with anybody now (providing people speak slowly and wait patiently for his lagging response! This we are still working on constantly!), he can easily independently write sentence after sentence to make into a paragraph. Just this week alone, he spent much time drawing a dinasour board game, complete with instructions on how to play, an invitation card to his birthday party for his teacher and all his classmates (complete with when and where it's going to be and what's going to happen at the party) and a "comic" book story of his trip to the zoo with Adek and Fadhil (his BFFs!).

Jeff and I feel like we are constantly keeping up with him and his amazing progress lately that we realise now how much we have underestimated him all this time. Also, how much we have really forgotten what it was like with him before because it is just so easy to take for granted now how I am able to just talk to him about anything and not only would he be able to understand what I'm saying but he can actually contribute something back to the conversation.

With the language in place, Kerri tells me the next steps for us to drill in him is to use the language appropriately, especially in social settings. All of us can tell that Raiyan has been developing a conscience socially and it really seems like he wants to have friends to talk to and play with but realising that sometimes he does get ignored by them (especially during times when he goes on and on about dinasours and animals!). Nonetheless, on the whole I am very pleased with Raiyan's progress when it comes to mixing together with his classmates as I do see him interacting and having some level of a relationship with at least 3 other kids in his class, so that's very nice for me to see.

To help improve him more in this area, Kerri is planning to have more social skills groups during the summer break where Raiyan and the other children with autism can mix with typical children so as it can be "practice" time for them, and especially for Raiyan who will undoubtedly be facing more social challenges when he goes up to Year 2 next year. **Any parent who are reading this and would like to volunteer their typical child to be part of these social skills groups is MORE than welcome to contact me and we would really appreciate to have your child around. I should say however that it would be helpful if they can speak English as you know these kids are being mainly taught to speak in English.

Now with that happy reporting, I just have to find the pweshes time to upload the many pics I've taken of Raiyan's creativity and progress! Look out for the dinasour board game, the birthday invite and pics of Raiyan and his friends at school to be posted up very soon! Promise!

Animal Instinct?

2009-04-29T10:32:00.006+08:00

Raiyan is currently on a school trip to Bandar and I just received an sms text from Jo saying:

"Can't believe your child - came into the library in Bandar for a toilet break, found the animal books within 2 minutes! Has he been here before?:-)"

The library in Bandar is our national library and so you can imagine the amount of books there are in the place. And yet, Raiyan did what he did the FIRST time he ever stepped foot in that place! No, Jo, he has NEVER been there before!

How does that make any sense?! Hahah!

Birthday Parties

2009-04-28T14:27:00.001+08:00

I used to really dread birthday parties. We started going to them when Raiyan was around 2 and a half years and these were parties of my friends’ children meaning Raiyan wouldn’t be particularly be familiar with the birthday kid (as opposed to a cousin or a classmate from school).

Even at that early age when I wasn’t supposed to be overly worrying about his development, I remember still detecting some differences in Raiyan already. I couldn’t help noticing his obvious disinterest in all of the other children, how he blatantly ignored others greeting him and trying to strike up conversations with him, how he was terrified of the birthday cake and would just look at it from afar and how he would run and hide when it was time for everyone to crowd around the birthday kid as the idea of too many people at one place just daunted him. However, even with those concerns in mind, I always managed to convince myself that he was behaving the way he did because he simply felt estranged with everybody in the room and it was just like him to be uncomfortable with new people he meets.

When he was at Stella Kindy, we started to receive birthday party invites which luckily were held at the school so in that sense we thought it wouldn’t be too much of a new environment for Raiyan since it’s held in an environment he is already familiar with. I completely accepted from the start the fact that Raiyan was oblivious to all of the invitations (and for all I know even the birthday parties too since I wasn’t physically there to see) because on every occasion that we got one, it was always me fishing it out of his bag as opposed to him giving it to me. I would also always go out to choose a birthday present without bothering to get any input from Raiyan on what I should get. I did this because I KNOW Raiyan was completely oblivious to the existence of his classmates anyway and I KNOW he did not understand the basic concept of what a birthday party is too.

During his first term at ISB (and a month before his diagnosis), he attended a birthday party at Jungle Gym which we were keen to let him go to since we knew he enjoyed going to the place. Unfortunately pweshes babah and I could not go so we asked my brother to go instead. I remembered curiously asking my brother upon their return if Raiyan played together with any of the other kids as at this stage I was beginning to feel really conscious about his lack of friends. Of course my brother replied no to but at the same time comforted me by saying that it was probably because he was too busy making full use of the playground equipment there. Ironically, Kerri Wilson was also that party (who I did not know of then) and it was then and there that (as she later on informed me) she quickly noticed there was something not quite right about Raiyan.

Naturally then I had begun to feel really anxious about birthday parties and would try to avoid going and just have pweshes babah go instead. As Raiyan got older, I realize other children got older too so birthday parties now wouldn’t just be a case of showing your face and eating cake. Especially since the birthday parties are attended by children belonging from the same class, it is expected that they will do things together and hence it will just be that much more obvious when Raiyan is on his own separated from the rest.

BUT you’ll be glad to read ahead of how things have changed so much for the better now. It was admittedly a gradual transition throughout the year that I didn’t personally play witness to since it was pweshes babah who had accompanied him to all of the birthday parties in this last year, so any developments are those that have been relayed by him to me. But nonetheless, Raiyan has definitely blossomed.

Last Saturday was Raiyan’s classmate Nadiya’s 6th birthday party held at her house and this was no ordinary party! In fact, it consisted of a series of structured games emceed by none other than our celebrity deejay of Brunei, Jenny Malai Ali! And it was then that it really hit pweshes babah (as what he told me after the party) of how far Raiyan has come. Not only was Raiyan mixing in and talking with all his friends, he really tried his best to follow the instructions given during the series of games. Even at times when he didn’t seem to understand, instead of avoiding the situation like he previously would, he instinctively followed or copied whatever his peers were doing! Apart from one activity where he had to suck marbles using a straw (which he naturally has difficulties with because of his dyspraxia/weak jaw motor skills), Raiyan was proud to report to me that he did well in all of the other games and managed to get 3 prizes!

Alhamdulillah upon hearing that and also together with all the happy social stories fed to me by Jo from school, I am more confident that Raiyan will further improve in this sticky area and I am also more re-assured that other children would probably give him that chance to prove himself despite thinking him to be so different when they first meet him.

So confident am I that I’ve already started planning the massive birthday party celebration for Raiyan’s upcoming birthday in June! Contrary to before, I have already asked for Raiyan’s input on what the theme should be (surprisingly Dinasours and not animals!) and who he wanted to invite (so far he has independently told me Fadhil, Haziqah, Jian Rong and David who I’ve noticed have been the 4 consistent close friends he’s had for a while now. Ps.: something amusing happened with his “relationship” with Anna which I will elaborate in a future post!).

Our family is of course mighty excited for this event because not only will we able to SEE how much Raiyan has improved socially but it will also be the best opportunity for us all to celebrate all of Raiyan’s achievements this past year – nobody can deny that Raiyan deserves the party of a lifetime!

On Hiatus

2009-04-22T19:38:00.003+08:00

I know this blog has been very inactive for a very long time and I have to apologise to any avid readers who do happen to miss Raiyan - well at least one of them voiced their feelings out to me today so I'm not completely perasan!

So this is just a quick note to say that Raiyan is FINE.. completely fine and doing very, very well. So well that I find myself in that tricky spot again where I feel unsure of whether or not I should still continue to talk about him in the context of his autism. Lately, he's been doing so many things just like how any ole' typical kid will do and we hardly witness any traits that are so obviously to do with the autism so I feel like the only stories I have to share would in turn make me look like an overzealous mother or dare I say it, even to the extent of "showing off" especially when I talk about him doing things that even surpasses some of his peers!

Nonetheless, I still do realise the importance of why I started this blog and that is to share clear-cut information of the process of how we are getting Raiyan to this so-called "recovery" place so I will still endeavour to do just that from now on.

The good news is that Pweshes Babah has just last night done up our study room and the atmosphere just makes it all the more conducive for me to comfortably sit down at the table and just blog... Which is why I have found this new semangat to create this post! So hopefully this will help entice me to do this more often.

This won't be the last you hear from me I promise! But if you really miss Raiyan, may I suggest you read all the older stories of him and amazingly see how far he has come?! Alhamdulillah! :D

Visit to the Fish Market

2009-03-29T20:33:00.003+08:00

Raiyan came along to the Jerudong wet market this morning (and Alisha too! hehe nothing like menyakaikan drg awal2!) and not only was Raiyan really good for getting over his fear of walking on wet surfaces, he thoroughly enjoyed himself going round the stalls and identifying the types of fishes he recognises from his animal books!

Of course I couldn't help being conscious of his labeling being only in English and the people manning the stores are telling him what they are called in Malay (Raiyan: "Tangeeree?") but at the same time maybe I was more conscious of myself as I was clueless of what half of the fishes are called anyway!

Apparently, these long fishes in the basket are "pikes"...

The most pweshes part was Raiyan singing out loudly to himself (while we were waiting for our fishes to be cleaned),

"1,2,3,4,5.. once I caught a fish alive..
6,7,8,9,10 then I let him go again..
why did you let him go.. because he bit my finger so..
which finger did it bite.. the little finger on the right!

We just couldn't help giggling listening to him and couldn't help but notice others were smiling too! So Cute!!:-D

Reasonings

2009-03-26T15:52:00.001+08:00

This is really, really tricky for Raiyan to say the least. His progress in this past year had us appreciate any answer he would give us, regardless if it is correct or not, because this means that he can actually respond back to us and this could hopefully be the early seeds of conversation for him to have with others.

But along the way, just getting answers from him has made him just be comfortable to give us that. NOW, we are trying to reason with him as to WHY he is giving the answer … and it has been short of a nightmare trying to get this out of him!

I really do feel for Raiyan though. There must be so many things going on his head, especially after all he has computed this past year and I am sure he thinks that the fact that he’s answering the question right is good enough already so why do we have to insist he explain why he came up with the answer? Well this is important for social situations when he has to understand what’s going on around him purely from just looking and observing and then it will be help him when he has to explain and describe the situation he’s observed.

To illustrate, we would show a picture of a girl washing the dishes and we would ask him “what is she doing”. Of course Raiyan can easily answer “she washing the dishes.” The toughie is when we go on and ask him “how can you tell that she’s washing the dishes?” See, I KNOW he KNOWS that she’s washing the dishes but I just want him to tell us HOW he knows by describing the fact that she’s at a sink, and there are soap and water and she’s scrubbing the dishes.

But what Raiyan comes up with instead:

“She washing dishes because they dirty”
“She tired from washing dishes”
“when you finish eating the dishes are dirty”

This is clearly a case where he sees the forest and not the tree because even though all of the things he is saying is true and sort of relates to what I am asking, but simply put, it is NOT directly giving me the simple answer that I am looking for.

As well this morning, I tried to do this exercise with him just through talking (no pictures) and I was telling him how baby Addin wee-wee on the bed last night. He adorably said “Uh-Oh!” (which shows that he understands it’s a “whoopsie” situation so the fact that he recognizes the context of the situation is very good!).

And then I asked him “HOW can we tell if Addin wee-wee in the bed?” Simple answer would be” Because the bed and Addin’s pants were wet” right?

But this is Raiyan:
“When Addin wee-wee, auntie nor take him out of bed and change his pants”

What do I do?!! Uwaaaaa… It’s so hard for me too because of course I appreciate the answer he is still giving… but sigh….. I guess this is something we really need to work on…

I briefly whined to Jo who quickly brushed it off and said to not worry about it and that he WILL get there. And then I remember all of the times before when I would really worry about something Raiyan can’t do and Alhamdulillah, sooner or later he DOES get it! Here’s hoping he can start reasoning sooner rather than later!

Out of the Box

2009-03-17T10:08:00.007+08:00

A known trait of autism is the relative lack of imagination and this rang true with Raiyan, as everything he knows and thereupon communicates are derived only from things he himself has seen, observed and learnt and not from what he has thought of himself. The rigidity trait would often worsen this lack of imagination as even if we try to "teach" him to imagine and free himself from what he is only familiar with, his resistance to change would always get in the way of him even attempting to think of a different picture, let alone an "imaginary" one.

Raiyan is also a very visual person which is why flash cards have worked wonders for him and his language but once you take away the flash cards, then it becomes a whole new battle altogether!

But slowly over the last year, we have seen Raiyan beginning to overcome the need to stick to things "as they are" and also we've seen his imagination starting to flourish, such as:

- During our Singapore trip and right after visiting the zoo, he himself changed the lyrics to "Old MacDonald" to go "Raiyan went to Singapore Zoo, e-i-e-i-o. And on that zoo, he saw an elephant, e-i-e-io. With a trunk trunk here and a trunk trunk there, here trunk, there trunk, everywhere trunk trunk... etc";

-Instead of just thinking and articulating just one verb connected to one noun, such as kick the ball, sit on chair, he can now easily say other verbs such as, bounce/throw the ball and move/sleep on chair. This is also in line with my earlier post on how we gave him a small item and he has to think of different ways to interpret it;

-He's correcting us less when we steer away from the usual course of a familiar story whereas before he would just NOT be able to accept it and he would insist we tell the story as how he's used to hearing it;

-We've been going through flash cards with simple pictures and a "speech bubble" on it and he is supposed to think of what is being said. For example, there is a picture of a barber and a girl with really long hair and Raiyan is supposed to "imagine" what is being said. His visual and literal mind would immediately just say "the barber says "I'm going to cut your hair" and the girl says "Please cut my hair." (zzzz boring right?). But NOW, (and because he just finished reading Rapunzel) he actually said with a giggle "the barber says "Hey! You look like Rapunzel!"

-Instead of just piling up building blocks on top of another, he has started to actually make them into functional shapes, such as a rowboat, a helicopter, an airplane, a car- and all of these independently too! Look at him proudly showing them off!

I accept the possibiliy of some parents reading this and wondering what's the big deal with all the instances I have described but trust me, it means a whole LOT to us. We really feel that it is important for Raiyan in this early stage to train himself to start thinking outside the box (as they say!) and hopefully open himself up to new and endless possibilities!

Which is why I'm feeling exhilarated with what happened this morning. See, we were doing this colouring activity last night and even with this one below, he kept asking me in the beginning, what colour is a diplodocus and what colour a torosaurus was etc. He even wanted to look for a dinasour book for reference! But I told him that it's okay, there is no right and wrong colour- just use your imagination and colour them with whatever colour you want! Which he did! How cute is the pink and green ankylosaurus btw?!

So I left him to finish that off last night along with more activities at the back of the page (for him to get 2 golden points!). But this morning in the car and on the way to school, I saw that he didn't do the last part:

Of course Raiyan just said "I don't know how to do it!". Clearly, being the visual person that he is, this was something that I needed to coach him on. At first even I wasn't so sure if he was able to do this. But I tried and asked him to close his eyes and imagine all the scenarios above and tell me what colours he sees. And he answered:

a rain storm: Grey

a beautiful sunset: Pink

a flower garden: Green for the grass and multicoloured for the flowers

a forest fire: Orange

your favourite ice cream sundae: chocolate brown

your favourite holiday: multicoloured. (I wanted him to be more specific and asked him what is his favourite holiday which of course is the ZOO so of course there are many colours in the zoo!)

a walk in the woods in the autumn: Orange

a farm: at this point, he was being more descriptive than just "multicoloured" and he answered red for barn, black and white for cow, pink for pig, green for grass and white for sheep!

a jungle: brown for trees, green for leaves and green for grass

a parade: red, blue and yellow just like in a circus!

Here's hoping for more progress in the future! Amin!

Let It Flow

2009-03-17T08:50:00.004+08:00

This was Raiyan last Sunday at Muara Beach Playground making friends with this boy who he just met and who I'm pretty sure did not speak English very well and yet, they played together and clearly enjoyed each other's company for at least half an hour- and also despite Raiyan's ultra bossiness too!

Picture: Raiyan: "You better hurry! Come here! I'm over here! Climb this, climb that!" Boy: "Okay!Okay!"

And of course Raiyan was just shouting away with his standard volume and there I was at a corner fighting the urge to tell him "Raiyan, lower your voice. Raiyan, don't be so bossy. Raiyan this Raiyan that.." but remembered what I had decided in my last post and just let him socialise naturally. The new friend didn't seem bothered with Raiyan's loudness and bossiness so why should I right?

Being Social

2009-03-04T23:09:00.001+08:00

As some of my followers would know by now, one of my biggest worries is the idea of Raiyan not mixing in well in class or when being around other kids in general. This concern was especially heightened when he had such a rocky start to the school year with there being complaints of his loud voice and his resistance to turn taking and sharing.

So it is no surprise that ever since then, we have been going on overdrive trying to instill in him one social skill rule after another. Every time he does something that I would perceive as rude or socially unacceptable, I would drill it in him to not do that again and if he doesn’t do something that he should be doing, like not responding to others’ questions, I would incessantly remind him to look at the person and then answer the question.

All of us around him, including Kerri and Jo gets kinda edgy over this that you can practically see the nerves on our faces every time somebody new asks Raiyan a question as we are just waiting with utter anxiousness for his response! Which is why I still laugh at one moment during our Hari Raya open house when Jeff’s boss was asking Raiyan his name, and there was Kerri and Jo on the other side of the room stopping cold in the middle of eating, anticipating Raiyan’s response and as soon as he said “Raiyan” they BOTH just exclaimed “good boy!” LOL!

However, I was recently reading up on social skills in the “Work in Progress” book and learnt that the best way for these children to pick up natural social language and incidentally social “rules” is through mixing in with their peers and not so much learning it from adults. It’s because children do have this innate desire to please their friends much more than their parents or teachers. Furthermore, the “natural” social language amongst kids are clearly so different from the “natural” social language of adults.

And then it hit me that it may not be such a good idea for me to go TOO overdrive with teaching him social language and rote teaching social rules because at the end of the day, being social is a spontaneous and natural thing and as soon as it looks planned, it ends up looking contrived and NOBODY likes fake people right?

And in terms of his language, the systematic way that he is taught inevitably leads him to sound very “prim and proper” when he talks which is completely fine with me as I am just content to have him talk. But the thing is sometimes he does end up sounding like a middle aged English professor! So lately, instead of forever correcting his broken English and making him speak in longer sentences, I’ve also taken a step back in that because I realize that I personally do not know any 5 year old who speak in a grammatically accurate 6-7 word sentence anyway!

Raiyan is at a point now where his personality is shining through and though I do accept that his language is not completely there and he still tends to talk on and on about his interests without really attuning to his audience, I have to accept that he’s still a kid, he will eventually learn all these so called rules slowly but through experiencing them and not just by being told about them but most of all, I have to be confident that despite all the shortcomings that I only see because I’m so stressed out over them, other children are also children, who are not cynical and who will be able to just see Raiyan for the sweet and delightful boy that he is. InsyaAllah he will get through this and at least for now, I’ve taught myself to not be so worried about it anymore. :D

Golden Points

2009-03-04T09:42:00.004+08:00

Jo first told me about the token system she's been doing with Raiyan and she also asked Dr. Lee during the seminar if it’s an acceptable thing to do. We were glad to hear that he did think that it is useful as a positive reinforcer for desirable behavior that we would seek from Raiyan.

Last Sunday at the bookstore, Raiyan really wanted to buy this amazing Little Einsteins Activity book, equipped with more than 1000 animal fact files and little “microfilm” pictures. Of course I was reluctant to do so since I’ve already bought him a bunch of stuff from my Singapore trip. Usually, Raiyan is actually fine with putting the book back on the shelf (this was once an actual “routine”!) but in this case he was resistant and he said “but somebody else might buy it!”. So just to be safe, we asked the cashier if there are many in stock and unfortunately the one on display is the only one left. Empathizing with Raiyan’s fear, we decided to just buy it for now but he can only have it once he has earned 50 Golden Points (similar to the token system Jo has been doing). Naturally, just hearing us planning to buy it was good enough for Raiyan so he seamlessly agreed to the plan.

So it’s been 3 days and 11 points into the plan and it’s quite good actually! Of course I didn’t hesitate to use it to entice him to finish his meals faster AND staying put at the dining table(which he did!) and I actually had it in my mind to do that at every mealtime. Raiyan thought so too until Babah stepped in and said that it’ll be too easy if we were to give it at every mealtime and there’s the risk of it becoming a routine too. Unfortunately Raiyan only found out about this change of plans AFTER he finished his dinner so when he ran to me and exclaimed “I finished my dinner! Can I get my 3 points now?” I had to break the sad fact to him and he let out a teeny sob “Aaawww..” together with a long face. I felt so sorry for him and nearly gave in but felt I didn’t want to overstep Babah so instead I asked him if he wants a banana instead and Raiyan immediately perked up and said YES and forgot all about the points he didn’t get! (We really forget how easy it is to make these kids happy sometimes!).

I keep track of his golden points by drawing stars on the whiteboard and keeping count of them with the BIG 50 at the bottom of the board. Raiyan gets so excited whenever we count how many stars he’s got, which at the moment stands at 11. But then he would ALWAYS say thereafter, “But mama, I think 50 is too much!” Heehee..

Also, apart from wanting desirable behavior, I’m also trying to use the points system to help avoid undesirable ones though I do try to keep it a minimum as I don’t like to “punish” him too much. The only thing I’m stressing on now is his articulation of “excuse me” which I know he can say but lately he has been lazy and saying “ku me” instead. I’ve been drilling this in him for the last 2 weeks now and he IS getting much better at it but just to instill it more, I warned him that if I catch him saying “ku me” I will take one point away. Oh you should have seen how sad he was when I did do that just the one time. I brought him to the whiteboard and canceled out one star and he just sat down in front of the board and cried out softly “nooo..”.. I felt so EVIL but the good thing is not only has he NOT said “ku me” ever since but he was even MORE motivated to get his points thereafter! Bless him!

Non Compliance

2009-03-02T08:46:00.000+08:00

Having our child not following what we say or do what we tell them is indeed one of the biggest challenges us parents face in raising our children. Usually we would tend to just blame the child for being stubborn, lazy, annoying and basically non-compliant.

However with Raiyan, especially in the early years, the issue of non-compliance never cropped up simply because we never expected him to comply seeing how he wasn’t able to understand what we instructed him to do anyway. And even when he DID seem to understand what it is we wanted, the tantrums that erupted thereafter were just too scary that we would just give in and let him do whatever he wants!

But upon starting ABA with me also learning to how best to communicate our needs and not just for Raiyan to communicate his needs, I discovered that maybe its not necessarily a case of “non-compliance” but more because children generally either do not understand the instruction OR the instruction is just too BIG to follow.

For example, we always like to tell the kids to put away their toys and we get upset when they don’t do it. Then we complain about how lazy they are and we threaten them with punishment if we don’t see them clean up their toys within the next five minutes etc. But what I’ve discovered I can do instead is to tell Raiyan to just put one or two toys in the basket and see if he’s willing to do that. He usually does because it’s a simple, small and straightforward thing to do and after he has done that I load up on the praises and the verbal reinforcements (good job Raiyan! You’re SUCH a good boy for putting your toys away!!) and after that I try to push it further and ask if he wants to put away more toys by asking or rather challenging him by saying “do you think you can put away three more toys in the basket?” and after having so positively reinforced the first time, he would still be motivated to do a bit more simply because he’s already on a roll with it and also since the next task just seems so achievable anyway.

Therefore, whenever you think your child is not “complying” with what you’re telling him or her to do, try giving them the benefit of the doubt that either they don’t actually understand the instruction or if the instruction is just too big and alien-like for them. Break the task down to something they are confident they can achieve and with every little achievement we compliment them and make them feel good about themselves and pretty soon after a series of little broken down tasks, the whole instruction would have been complied with before you know it!

Give us a clue

2009-02-24T09:15:00.001+08:00

Part of Raiyan’s programme recently was for Raiyan to tell us why something is what he thinks it is. For example, when shown a picture of a “cowboy” and if Raiyan himself thinks it is a cowboy, he has to tell us why he thinks it is a cowboy, which would be reasons like the boy being on a horse, him wearing a cowboy hat and cowboy boots and with him carrying a lasso. Raiyan slowly learnt that these things are called “clues”.

He ended up getting really keen on doing this as he just loves to get us to guess what he is holding or what it is he likes etc and if we say we don’t know, he will say “Ok I give you a clue! It is round, blue and it bounces!” (A ball!) OR “It has a mouse and cat in it and it begins with the letter T!” (Tom and Jerry!).

This has also proven to be good for reducing our prompts with him because rather than just tell him the answer straight away, we would instead give him clues and wait until he figures it out eventually. Naturally, this is really conducive towards his language development as well.

But most of all, it has proved to be really helpful during those times when we are not completely sure if he knows something but instead what he does is to pretend to know it. What this incredibly cheeky boy like to do is to trick us to telling HIM the answer by asking us to guess when in fact we are just going to feed him the answer by doing that!

For example, when we were about to visit his dear friend Fadhil at the hospital and whilst deciding on what present to buy for him, babah asked Raiyan if he knows what Fadhil likes. At first we can tell that he was just playing “hentam” because he was saying “Dinasours, animals and Tom and Jerry” which we know are the things that HE likes.

But then he said “Oh I know what it is. Come on Babah you know what it is. Guess!”

We probably made like close to 10 guesses and Raiyan kept saying “No.. come on.. you know it..” And even when we kept saying we give up and begged him to tell us the answer, he still insisted that babah knew the answer and so he’s not giving it away!

Around the 11th guess, I started to get suspicious on whether or not he actually knows the answer and perhaps what he was really doing was to trick us into telling him what Fadhil’s favourite thing is because he himself actually has no idea!

But lo and behold, I remembered the “give us a clue” trick and asked him for one and he immediately said “it begins with the letter F and we watched on TV at Adik’s house”. Only then did babah completely remembered “Fireman Sam” which he vaguely remembered Raiyan telling him about them all watching it together during one of the times they were at Adik’s house!

We really can’t ever underestimate this boy or what! :D

$Money Money Money$

2009-02-23T12:08:00.004+08:00

We have started to get Raiyan acquainted with MONEY! Oc course following the basic principles of ABA, everything we try to instil needs to be broken down into very small and easy to follow steps so for now we are only familiarising him with 1 cents and 5 cents coins.

Just to make it interesting, we set up a pretend shop where there is a cash register and a box of fake supermarket items that Raiyan would need to purchase from us and we would ask for a certain amount of the coins that he has (which again, only consists of 1 cents and 5 cents coins). Oh and it is also worth to note that to do this, it is vital that the child has a basic knowledge of additions and at least to be able to add numbers that total to an amount not more than 10.

Just to share, this is how we are teaching him the value of money on a step by step basis:

1. First, we would just ask for either 1 cent OR 5 cent. What I tried to do is that with 1 cent coin, I taught him to identify it by it being gold coloured and having a diamond shape on one side whereas the 5 cent coin is silver and has a scorpion like shape on one side (of course it being an animal makes it all easier for Raiyan). So he can buy an apple for 1 cent and he would give me one 1 cent coin and he can buy a carton of milk for 5 cent and he would give me one 5 cent coin. This was relatively straightforward because all he had to do was remember the identity of these 2 coins separately from each other;

2. Once he has familiarised himself with what a 1 cent and a 5 cent coin look like, I tried to move by making him give more than just one coin. Again, using the simplest way, I ask him to give me 2 cents for a piece of bread to which he would give me two pieces of 1 cent coins. And then I would move on to 3 cents, 4 cents and then 5 cents where he would give me three, four and five 1 cent coins respectively.

3. Once he's familiar with that, then I started to make him do the same thing with the 5 cent coins but since we're keeping it simple, that would only make up one configuration which is two 5 cent coins to make 10 cents. This was not as straightforward as per 2. above as it took a while for him to see that ONE 5 cent coin actually makes up 5 units and not just 1. I really had to prompt him for this and in the end it did "seem" like he got the fact that TWO 5 cent coins make up the 10 cents that I asked from him. However, I am still not convinced that this is really mastered so there is definitely a need to revisit this over and over again.

4. You would think I'd stop at that point, seeing how he clearly had difficulties identifying a 5 cent coin to have 5 units as he still saw one coin to have just one unit. Noentheless, I still pushed further and tried to get him to give me 6 cents when he only have five 1 cent coins which would then compel him to give me a combination of one 5 cent coin and one 1 cent coin. OMG, this was such a STRUGGLE to do and I REALLY had to talk through every step of the way that I nearly went crazy! LOL! I would already have the 5 cent coin and the 1 cent coin on my palm and when asked he would STILL tell me that I only have 2 cents! Even after having passed 6 cents and to go on to 7 and 8 cents he was still finding it hard to grasp and his first answer was always (5+1+1) 3 cents and (5+1+1+1 )4 cents!!

I tried to get him to use his fingers by putting up five on one hand and then the 1 cent units on the other which did make it a tad easier but there is no denying that in the end, he reallly, really has to work hard on this.

I'm going to be more creative in terms of giving a better reinforcement for him to concentrate and work harder when doing this (as he kept switching off and gazing halfway through when we were doing it!).

In the bigger picture, I could tell him that it would be useful for him to understand the value of money so he can go to the bookstore and buy something himself if we give him the money beforehand? :-D But for broken down reinforcements, I really need to think of things he would really love to have so that he 'd be more motivated to learn this! With how difficult it seems to be for him, he needs all the motivation he can get!

Dinner Table Battles

2009-02-23T00:45:00.003+08:00

I have mentioned before how difficult it is to get Raiyan to finish eating his meals and to stay at the dinner table throughout. I tried to use 30 minutes of TV as a reward for finishing his meals but after a while, its effectiveness receded as we still had to nag him every 5 seconds to put a spoonful into his mouth. Not surprisingly, this was one of the questions we had for Dr. Lee during the 20 minute private consultation we had with him.

Dr. Lee said that the best way (which is also something he sarcastically said is something mothers would just "love") is to make Raiyan know that eating can only happen at the dinner table and hence if he decides to leave, he has to understand that he will not be able to eat anything else until the next meal so he risked getting hungry during that time. Of course me as a mother immediately thought that this would naturally mean if Raiyan leaves the table after just one spoon and if he continues to do this at every meal, he will start getting malnourished! Dr. Lee assured me that from his experience, this tactic would only take up a few days at most as "surprise surprise" the kids would always end up being hungry!! The most important thing is (along with dealing with other behavioural problems) is to be consistent and to follow through.

So we've been trying that with Raiyan and we have persevered through his unremitting whines and excuses.. The usual ones he comes up with is:

R: "I miss Alisha, can I be with her ?"(in the playroom-I know I lack consistency this way as I let Alisha and Addin eat in the playroom before the TV!)
to which I answer : "You can be with Alisha for the rest of the day after you finish your lunch"
R:But why Alisha eat in playroom? I want to eat in the playroom too?"
Me: Alisha is still a baby so it's ok for her to not eat at the dinner table. But when she turns 3, she must eat at the dinner table too ok?"
R: "Okaaayy..sob sob"

So when I did what Dr. Lee advised to and told him that he can leave the dinner table if he doesn't want to eat anymore BUT he cannot eat anything until dinner time, he STILL decided against leaving because I know he wants to eat his chocolate chip cookies right after AND I also think because of this natural compliant nature, he could tell I was upset by making that threat so he just stayed for fear I might get even more upset if he DOES leave! Bless him!

In the end, he still finished his meal and he still complies to eat at the dinner table.. BUT we STILL have to continue nagging him to continue to feed himself everytime we see him switch off and gaze into mid-air! Sigh, somethings just never change BUT we really hope to overcome this one day so long as we are consistent and we persevere!! InsyaAllah Amin!

I'm Back!

2009-02-23T00:31:00.003+08:00

Finally, things are starting to wind down and our family is beginning to go back to a "relatively" normal life after such a busy two months since the start of the year.. As for me, I have finally gone on my first work overseas trip which has afforded me with the guilt free opportunity to update this blog of mine. Again, I decided to give a new look to the blog just because fickle me got bored with the old one. Plus, apart from animals, Raiyan also really loves rainbows so I just thought it would be great to have another love of him to be the theme of the blog.

As I said, things have been really hectic lately, especially after the one week seminar we had earlier this month. I just cannot quantify into words how much I learnt from Dr. Douglas Lee that week, both during the seminar and also outside of it (when kiasu hubby and I tried to grab every opportunity to share meals with him!). All in all, what I learnt that week really reinforced what Kerri had taught me in this past year and I was so pleased and humbled to see that the basic methods of ABA has been instilled in me and is something that I can generalise quite easily if I were to compare to what it was like when I first started. However, I was also in awe at how much MORE I can do to help Raiyan and it has gotten me all fired up to start all fresh and be more organised in dealing with Raiyan's behaviour and generalising what is taught during therapy.

So hopefully, I can safely promise to blog more now and specifically I hope to be even more focused on the kind of things I am doing in trying to help Raiyan improve and improve and reach his full potential! The work never stops indeed!!

Looooverrrlllyyy!!

2009-01-31T14:51:00.005+08:00

Okay, it's been an emotionally charged day for me so far with the article being out in the papers but insyaAllah, I hope I'd be able to reach out to some parents who can relate and can help start their journey to recovery for their child. Amin.

With me being a bit of a bag of tears today, it was very timely and of course "lovely" to receive this lovely blog award from a fellow autism mother (though with many more years of experience!)) Tanya at Teen Autism. I am truly so humbled to get this award because it means so much for me that a mother like her who has gone through so much more can appreciate the stuff that lil old me writes. She is truly such an inspiration and I am honoured that SHE had given me this award.

Of course the rules state that I have to pass the award on, though Tanya didn't state how many. I'm guessing there's no minimum so I'm just gonna pass it on to these other ladies that always make me feel.. simply.. "happy" when I read their blogs. They are also mothers who inspire me and have really shown me what "unconditional love" means. Kellys6, Lisa, Shuweets, Casdok, RaggedyAnne, and Julie, thanks for sharing your stories and to show the world how rewarding it is when you dedicate quality time and attention to your children. Keep up the great work!

Busy Busy Busy

2009-01-30T23:30:00.003+08:00

I have seriously been feeling so unsettled for not having updated this blog in quite a while. There has just been so many other things floating around that has caught more of my attention and just sorting through and prioritising all of these affairs took up so much of my time that I just lost focus on what to blog here!

Well let me first start on some updates on Raiyan:

1. We’ve shifted his bi-weekly sessions with Kerri from Tuesdays to Fridays now which means I can sit and watch! This is really valuable for me to have on top of being able to watch Jo every Friday afternoons because I can see more clearly how they carry out the programme and how they converse with Raiyan to elicit the appropriate responses from him. Plus it gives an added extra 15 minutes of Raiyan’s time with Kerri since before this, the last 15 minutes was the time when Kerri and I sat down to go through the bi-weekly programme together and obviously that’s not necessary anymore now that I watch the programme being carried out myself;

2. Because of the recent floodings and power cuts, Raiyan was away from school for almost a week (counting Chinese New Year on Monday). Needless to say, he was BORED, restless and was extra whiney last week. I felt really sorry for him but at the same time, he was really beginning to push our buttons with his persistent demands. After the number of times this has specifically happened in the past, I’ve grown to dread school holidays unless we use the time to take Raiyan somewhere to alleviate his boredom. But that’s just him! Other children I can imagine would probably love school holidays ( I know I did!) but with Raiyan, he becomes this cranky, stroppy brat instead! Not long after starting school last Tuesday, he’s back to his cheeky and lovable self again! Alhamdulillah!

3. Raiyan actually sat for his first ever test on Tuesday morning. It was a literacy test where he had to recount and write down a story consisting of about 6-7 sentences that was told to him beforehand and he would be tested on spelling, punctuation and the correct uses of capital (or as Raiyan calls it “catipal letters”) and small letters. I was pretty nervous about the idea of him doing an actual test and we all thought it would be useful if Ayesha (who has been up until last week shadowing him for 2 hours a day at school) be present as back up. She did prove to be handy as Raiyan at first refused to do it. As I’ve explained before, Raiyan finds trouble in following through his work not because he can’t do it but simply because he can’t be bothered to. I guess you could argue it being similar to simple laziness but as Jo explained it, if its an activity that he has already done before and does not see the point behind doing it again, he just won’t. That is quite understandable as one can imagine getting annoyed with having to do mundane things that one already knows how to do and at the same time see no purpose in doing it again. But unfortunately, that’s what the journey of learning in school is about isn’t it? He did in the end finish the paper upon some gentle coaxing from Ayesha. I was already so pleased to hear that and would be thankful to find out if he just passed but Jo actually said after scheming through the papers that she’s confident he can be in the top 3 of the class! Haha! Will confirm his “results” soon!”

4. Outside the therapy programme and apart from that 5 day no school period, Raiyan has really been a pure blessing at home these days. He obediently watches only 3*30 minutes of TV a day (which is a reward for eating his meals) and will switch the TV off everytime his 30 minute alarm on the timer rings. Now he actually needs reminders to watch his promised TV especially now that I don’t go back for lunch and without me there, it just doesn’t occur to him that he can ask the maids to switch it on (well I guess the routine is to ask me only- sigh, bless the need for routine sometimes huh!). He has easily been finishing his meals with minimum cajoling (well the TV reward was a lot of help!) . He’s been actively engaged with Alisha and Addin and looks to be genuinely in complete love with the both of them. Sure they still fight when not wanting to share things but which siblings don’t right?

But what’s best is his natural language getting better and better by the day. He still gets stuck when I ask him a specific and unfamiliar question as he finds it very difficult to answer as either he doesn’t understand my question completely OR he has this extreme fear of giving a wrong answer. Hopefully within time, he will learn that when talking about his feelings or stating an opinion, there never is a right or wrong answer right?

Anyway, to share some his adorable quips, just this morning in the car on the way to school he adorably exclaimed “Look! (Pointing to outside the car) I saw 2 dogs between the trees. Yes, I did, I did saw 2 dogs and they are between the trees” (he has this thing where he repeats everything he says at least twice. Not unlike his bibiran mana I think). Then Babah asked “Are they wet Raiyan, because of the rain?” And Raiyan replied “Yes they are. But it’s okaaayy. They just shake their faces and they will become dry again!”

Now moving on to the main reason as to why everything just seems to be all over the place at the moment. Learning Ladders Society has been closely working with the Special Education Unit of the Ministry of Education in organising a National Seminar on Behavioural Interventionand Autism to be held at the ICC NEXT WEEK on 2nd- 5th February 2009. To be honest my role hasn’t exactly been that monumental but yet I’m finding it so hard to catch a break! It’s probably due to the exasperated feel I have of not having my husband around as he is LITERALLY running all around town getting all sorts of things done. As to my role specifically, well I did appear briefly with Ms Jennie Ong of SEU, MOE on Rampai Pagi last Friday morning to promote word on the seminar (I was a last minute stand-in Linda was unable to make it due to problems related to powercuts. You can just imagine the distress of her kids right?). And for this Saturday and hopefully next Wednesday too, I will be contributing some articles on autism to Borneo Bulletin. Doesn’t seem much BUT it’s still something if you think of how I had to practise my script for the interview whilst having the cold AND how tricky and different writing a whole newspaper article is from blogging! With the blog sometimes I just allow myself to blab and ramble on but of course it doesn’t feel right to do the same in the case of the newspaper right? On that note, one of the articles is basically a summary of our family’s journey since Raiyan’s diagnosis and whilst writing it, I realised how much I’ve blocked out all of those troubling early years because it’s really just so heartbreaking. And then when I had to dig them all out for this article, I just did not expect how crushed I would feel right after. Looking back, those times were seriously a really rough period and remembering them just makes me appreciate where we are now so much more.

Oh, I digress. I was talking about the seminar and somehow it still went back to me! (hah! Maybe that’s why I’m not playing a bigger role in the whole organisation of the seminar!). Anyway, this National Seminar is going to be HUGE as we are expected to have almost 600 invited special needs teachers, teachers with autistic children and parents attending but what’s absolutely exhilarating for our society is that it’s ALL going to be about Applied Behaviour Analysis (ABA).

FINALLY, we hope others can start educating themselves on this amazing type of therapy that we do. FINALLY, we hope others can start seeing the amazing progress children on ABA can make. FINALLY, we hope others see and understand what I and the society have been yapping about all this time.

The expert consultant that will be speaking during this 4 day seminar is Dr Douglas Lee of Behavioural Solutions Inc who has a vast experience in the field of autism and behavioural intervention. He is also affiliated with British Columbia University which according to our Education Ministry is actually a very respectable university. Hence we are completely honoured and humbled that he is actually coming to Brunei to deliver various presentations during the 4 days.

During his stay, Learning Ladders parents are also each given the golden opportunity to have a 15 minute private consultation with him to ask him any question under the sun about our children and autism in general.

I will try to update as much as I can next week (I’d LOVE to do some kind of “live blogging” haha) but I can’t promise how “unbusy” I’ll be as I am manning the registration desk for the whole 4 days. But because I am absolutely excited for this golden chance of a learning experience, I hope I’d be as enthusiastic to share it here.

WATCH THIS SPACE!

PS.: Look out for the newspaper article! Hopefully it’ll be out tomorrow entitled “Our Life With Autism”

Raiyan Social Update

2009-01-17T16:15:00.003+08:00

Okay enough of all these deep shcmaltz I’ve been composing of late and high time we start talking about pweshes Raiyan again! Sorry to have not updated on his progress specifically in so long. I had actually planned to do a 2008 round up which basically summarizes all of his achievements month by month all the way from when he started ABA in January 2008. As you can imagine, this takes up a lot of work as I had to go through his thick programme file week per week. It is worth the effort nevertheless because it reminds me of how he was before (how easy one forgets!) and it is just amazing how far he has come. I am happy to report that I’m already up to October so expect to see that post up very soon!

Anyway, I did want to share something Jo told me yesterday that I’m beginning to be more convinced of as opposed to before- Raiyan actually having genuine “typical” friends that not only he seeks to play with but seeks to play with him too! All this time, I guess I really underestimated both Raiyan and “typical” 5 year old children because I just keep thinking of how others would not being able to accept the “difference” in him- I mean how could other people not find him ignoring them rude, or what about the fact that he strays off into his own topic conversation unilaterally without being attuned to his audience..

It’s not like I thought he will never have friends, I just didn’t think he was at THAT stage just yet because I know it’s still difficult for him to tune in to someone talking to him and to stick to one conversation at hand. At the same time, I wasn’t all that concerned and it wasn’t really something I deeply craved for as he was building friendships with his Learning Ladders buddies anyway, like Adek, Fadhil, Danial, Raiyyan Iman, Harris, Hakeemi, Sarah etc.. The fact that he always talk about them comforts me with the thought that no matter what, he DOES have friends in them.

So that’s why I was just OVER THE MOON yesterday when Jo insisted (cause I was still pretty hard to convince!) that Raiyan has this one boy pal in another class (who incidentally was from his reception class last year) named Jian Rong who he looks out for every break time AND Jian Rong looks out for him too :D:D:D:D She didn’t tell me exactly what they do but the idea that the 2 of them loyally looks out for one another at every break time is just too much of an *uhuks* moment for me to handle!

So later on at dinner I asked him about his friend and of course the first people he always names are all his Learning Ladders friends. But when I kept asking about somebody else, he hesitated and didn’t know who I was talking about. So I clued in the fact that he is in year 1B and his name beginning with the letter “J”. He still didn’t quite get it until I said “Jian” and he let out the BIGGEST smile and squealed “OOOOHHH JIAN ROONGG- He’s not in 1B, he’s in 1I! YESS He's my friend..”. BLESS!!

So YES, he CONFIRMED that Jian Rong was his friend and they play chase together at breaktime and other games too. From then, it was easier for me to ask him who else are his friends as he already understands what angle I’m coming from. Before, I would ask him who are his friends in class/school and he JUST DID NOT get the concept of what I was talking about. But NOW that we’re talking about Jian Rong, he knew exactly what I was asking and it wasn’t too hard to get out of him 2 other friends that he likes to play with- Anna and Adam!!! (Who incidentally Jo also told me likes to play with Raiyan too!) Alhamdulillah!! Isn’t it great! PLUS Anna is BEAUTIFUL! (Girlfriend potential maybe? Hahaha astaghfirullah….)

The Journey Continues

2009-01-15T10:06:00.007+08:00

At the dawn of the New Year, I was at one point contemplating changing the direction of this blog to focus more on just the therapy, the society and our relationship with the school and not so much on personal stories about Raiyan (you know entries like “Bossy Boy” and “Chubby”). Instead I wanted to share such stories in the “Pweshes Diaries” blog which just generally talks about my children’s antics.

It was really difficult to put into words how I felt and especially doing so with an attempt to avoid offending anyone. But simply put, Raiyan is such a different boy now after one year of therapy and undoubtedly one who possesses a distinctively genuine personality that on some level, I find it unfair, for him and for others; for me to be writing about him purely in the context of his autism within this autism blog.

Don’t get me wrong, I still believe Raiyan is autistic and that will always stay with him but if I haven’t made myself clear before, I am at the point where I see Raiyan being so much more and in terms of the autism, I see it more as a gift as opposed to a burden. Though I feel like this now, I am by no means discounting or dismissing the difficulties autism has caused for Raiyan in the past; and for other children and their families who are still facing them. Alhamdulillah I am eternally grateful that our family are blessed with where we are now and to also be at a place where we have adapted to the autism by constantly making the effort to talk to Raiyan (and everyone in the house for that matter) in a certain ABA way-clear, broken down, direct and mutually understanding.

Of course there are difficulties still present, such as the lack of social cues, inability to fully express himself and the tendency towards utter egocentricity. These are admittedly ongoing challenges we have to deal with but when put into perspective with past challenges like complete lack of communication, obsessions, rigid routines, resistance to new things and of course the notorious tantrums, what our family has to deal with now is definitely not as nerve-wrecking as it was before. InsyaAllah it does seem like Raiyan is able to successfully manage these challenges seeing how they have not surfaced in a very long time. What we see now is him truly blossoming and quickly catching up with his peers that many who meet him for the first time thinks he’s indistinguishable. Now he independently comes up with the cutest quips that I, just like any other parent, loves to share on this blog just because it’s something coming out of my child as opposed to it being something related to autism.

The situation in Brunei is still very tricky in that not only is awareness on autism limited, the notion that these children can learn to overcome their autistic traits is practically unheard of. When I personally tell people that Raiyan is autistic, they immediately think they have to feel sorry for me. Though I completely do not blame them to feel this way as I know there are many other families out there who still has to constantly face the daunting side of autism in their children, I still can’t help feeling slightly cheated upon receiving the pitiful looks because if they were to really know Raiyan NOW, they would be surprised to see that we actually don’t really deserve the sympathy. This is especially so if you were to see his incredible report card of last term! But nevertheless, I accept that a lot of autism families in Brunei are still facing uphill struggles on a daily basis and urgent attention from the authorities is seriously needed. That’s why I was scared I might then be transmitting mixed messages when I’m talking about Raiyan in such an amazingly positive way.

So what do I do? Seeing how there is still much awareness needed for autism and its diagnosis, prognosis and treatment, do I want to continue to write about Raiyan that makes him seemingly “normal”? I mean it’s logical for one to conclude from reading the blog that autism is not such a big deal seeing how Raiyan is coping with it so well. I reiterate, I really do not want to discount the challenges other families that I know, who still needs to be paid more attention and as horrible it is to accept, it is easier to obtain this attention when a disturbing or depressing image is portrayed.

At the same time, I don’t want EVERYTHING Raiyan does to be construed as an autistic “thing” especially seeing how the complete attachment of that “label” has proved to be such a unnecessary nuisance for him. I mean some of the adorable things he does and say can very well be separate and independent from the autism. That’s why I thought I should share “those” stories on a non-autism blog rather than here. With this in mind, I was almost convinced that this is the way I should proceed with the blog.

However, the negative consequences of autism in Brunei still being perceived as something depressing and "not wished upon anyone" lingers on in my mind. I know of parents who insist to stay in denial about their child’s condition even though the symptoms are obvious and not getting any better. I know of parents who choose to not take their children out because they can’t bear the attention they draw when being out in public. I know of parents who doesn’t even talk about their child nor share stories about them believing it’s taboo to do so. I also know of parents who proudly talk about their child’s conditions and take him out in public even though he is still non-verbal and relatively hard to control, only to be shot patronizing looks from others. This is when I realized that if I stop talking about Raiyan as he is, I will continue to feed into this unfortunate stereotype and this I fear may lead to MORE parents choosing to be in denial about their child that they may potentially miss the boat for early intervention. Far worse, I fear this may lead to MORE parents feeling alienated from the rest of society resulting in built up resentment and frustration simply because they had to suppress or feel the need to deny something that makes up such an intrinsic part of their lives.

So I decided to maintain the blog as it is. I have to trust that others remember that autism is a spectrum and it would seem that Raiyan is on the mild end and there are others on the spectrum who still require more urgent and close attention. I also have to trust that others FULLY read this blog to see that autism IS still a big deal and Raiyan would not be where he is had he not received the appropriate treatment this past year.

I know for now Raiyan may not speak for the majority of autistic children in Brunei and I don’t expect for people to think he that he is. But that’s not going to stop me from continuing to hope to reach out to other parents on the spectrum who does feel they can relate or even aspire to want to relate. In line with my pweshes philosophy, I can only continue to hope and pray that in time, Raiyan and other children like him can not only help to inspire other families to accept the autism and work on it as early on as possible and insyaAllah along the way they too will be blessed with the opportunity to discover its beautiful side that I see today. And once you’re there, I challenge you to not want to share it too. :D

ICC Consumer Fair Pictures

2009-01-10T10:08:00.004+08:00

These are the pics of our pweshes booth that I took last night!

That's my dear hubby trying to set up the umbrella..

This is our recyclable tote bag (this one was made around last year and somehow since we were such novices at the time, the Learning Ladders logo is actually missing! But it still carries the message of autism awareness which is more important.)

Pweshes Mimel hard at work- she was manning the booth all afternoon yesterday! Well done Mel!

Our t-shirts which come in round-neck and polo. The black t-shirts carries an image of a girl and an autism message at the back of it.

Our autism awareness posters with our pweshes kids (these were first presented during our launching ceremony in May) . They basically introduces in very simple terms what autism is, and what are the signs to look for..

Our hot drink thermos in assorted fabulous colours!

Notebooks with matching coloured pens (but the ink of the pens are only blue or black). These also come in yellow, red, orange ad green. ( I should have taken a picture of all the colours duh!)

My favourite scene from our LL Autism Awareness Video (raiyan looking and playing with himself through the camera lens and from the camera screen :D). The video is being played on repeat at the booth so people can see how we do our therapy and what the society is about.. I mean who can resist watching these adorable munchkins!

Again, hope to see you there! Come and support us please! Thanks!

ICC Consumer Fair

2009-01-09T21:08:00.001+08:00

Just a quick info that learning ladders has its own booth at the ICC consumer fair and we are selling awesome goodies like thermos, pens, highlighters,umbrellas, t-shirts, notebook with matching pens and tote bags.

Funny story was that we ONLY just got the goodies this morning so we were actually planning to cancel our booth! Luckily Mimel intercepted Linda almost canceling at the very last minute and thankfully with it being a Friday Mimel, Linda and Dino and of course my dear Hubby too quickly whipped something and alhamdulillah it looks great!!

I'm posting this from my iPhone so I can't put any pics but I shall put them up as soon as I get home - cause I'm manning the booth now!

Please come and show ur support and buy our goodies ok-they were chosen by us! Hopefully you will find them in good taste heehee

Just to share, the funds will help towards renovating and decorating our learning center and of course they will always be useful for resources for the therapy and also to help top up our family in need fund.

Thanks and hope to see u there!

2009- Bidding adieu to troubled thoughts

2009-01-03T10:54:00.005+08:00

This past year I have learnt so much and Alhamdulillah some lingering insecurities about my knowledge on autism and how to handle it have been replaced with a renewed confidence in my own personal beliefs in how to best raise Raiyan and help him handle his autism.

Even though admittedly I’ve always been drawn to debates like how a driver finds himself forced to look at roadkill, I’ve now pretty much abandoned the possibility of any common ground amongst the various camps in the autism community because autism is just too wide an issue comprising of thousands of nuances in severity, symptoms, reactions to treatments, sensitivities and beliefs.

But just for closure’s sake, I am going to state right here what I have learnt to accept:

I don’t believe vaccines cause autism but I do think that there are some children that have some kind of pre-disposed gene that may be made worse by vaccines and this may lead to more obvious autistic traits. I believe Raiyan was born autistic but because he was 7 weeks premature, his immune system was probably weaker and environmental factors may have affected him more and made his autistic traits worse.
I fully believe in the powers of early intervention and thus parents rather than continuously living in fear and denial over whether or not their child is autistic or not, should just seek help and start their research into the many types of available treatment as early on as they can.
I fully believe in the powers of ABA or any behaviour modification therapy as the basis and the mechanism to treat the child-whether it’s to treat obsessions, repetitive behaviours, speech, sensory issues, motor skills issues and social skills. I believe that Raiyan worked hard and was continuously motivated not only by the rewards he was promised but by his own successes at the end of it. Of course, the first few weeks or months or even years would be hard but we always have to picture the end goal and providing no verbal and physical abuse are involved, a parent should not have to be guilty about subjecting their child to repeated amounts of teachings and disciplining because we are only doing this to help our children in the future. Susah sekarang, senang kemudian kan..
I would prefer more energy being exerted to focus on finding appropriate treatment and fighting for governments to provide treatment both medically and educationally rather than spending resources and energy on finding a cause and cure.
Autism cannot be cured. This is in the sense that you can’t just turn an autistic individual to become “non-autistic”. The autistic way of thinking will always be present and I have always believed that’s what makes these individuals so special that if you even begin to understand it, you would be quick to think how ludicrous it is for anyone to search for a cure to exterminate it.
Autism however can be recovered and I do believe some parents who have said their child has “lost the diagnosis.” When Raiyan was diagnosed, he scored under average for simple things like knowing the purpose of objects, describing the attributes of things and recognizing basic emotionos because unlike typical children, those things did not come naturally to him. But now, he is able to do them because he has been “taught” it through the therapy. Along with constant teachings of many other things and Alhamdulillah with Raiyan being able to generalize what has been taught to him, Kerri thinks he’s on the way to losing his diagnosis and is quickly catching up with his peers! Having said that, traits like difficulty with social cognition and sticking to rules of conversation would probably always stay and would be something that Raiyan would need to work on for life. Those are the autistic aspects that will probably stay with him but that’s OKAY. Having those issues do not preclude him from leading an independent life. When I talk of Raiyan improving, progressing and even now I am more comfortable with saying, RECOVERING, I am looking towards him growing up to be able to live independently and adapting to situations whilst being able to "handle" his autism along the way. Because I know Raiyan is on the higher end of the spectrum and with how much he has succeeded in the past year alone, why shouldn’t I have such dreams?

I am not writing all this to convince others to share my points of view. More than anything, it serves as a reminder to ME as to how I really feel deep down about all this because I still find myself getting easily swayed after reading the countless amount of autism literature out there.

I need to start focusing on what I personally believe in and not waste further time deliberating about why others do this or that or say this or that. I’m also tired of fearing how others may interpret my blog because I know not all autism parents would agree with me and would still find fault with what I’m doing with Raiyan. But at least, I have tried to make clear my positions on the above contentious issues.

What I would still love to do is find other parents, even if it's just a handful, that are in the same boat as me who-

strive to keep the picture of autism a positive one;
accepts that these kids are hard work and require constant dedication and attention;
understands that no parent is in any position to judge what another parent does;
do not resort to name-calling or attacking language;
are not guilty or insecure about their actions over their child for fear of being judged as being a bad parent;
feel blessed with seeing their children’s progress; and
celebrates every little achievement (that incidentally would help make it easier to put aside any negative and attacking comments as nothing more than fluff!)

Wishing all pweshes autism families out there a great and fruitful year ahead!! Amin!

Chubby!

2008-12-26T13:08:00.005+08:00

This is Raiyan doing "chubby" boy - it's something that I taught him which an old darling friend taught me back in college hehe.. Kakak Shayeen, if you're reading this, it's especially for you! Thanks for teaching me this cute thang.. everybody loves to watch Raiyan doing this!

What's YOUR autistic thing?

2008-12-25T11:15:00.010+08:00

As I think I might have mentioned on here or on pweshes diaries, my one "thing" that you could call bordering on an autistic trait because it's something that uniquely bothers me and not so much others, is hating to see different play-doh colours being mixed up.

I think that's probably why growing up I didn't play with play doh much if compared to other children because this "thing" of mine must have restricted me from being able to play with the play-doh as extensively as other kids.

I think it has to do with the fact that once they're mixed, that's IT. You can't go back to the original colour and you're left with the mucky colour that is the unfortunate product of your mixing experiment. Just like Raiyan's green farmer he once made.

And also, knowing how much the kids love to play with play doh, we end up just buying new sets of play doh everytime we go to the shop. Which would affect another trait which I can say is probably a typical trait a lot of other parents share- spending more money!!

So thankfully I discovered from the grand internet a way to make your own play doh! Admittedly, they are not as perfect as the store bought one but the kids didn’t seem to notice any difference (even Raiyan!!- or I think his polite conscience has been shining through more lately!) and I could finally sit and happily watch them play the play doh and not worry about all the colours getting mixed up and ALSO about them drying up etc etc because once that happens, we can just make some more! Yay!

the mixed colours don't bother me anymore!

A few funny things about this story that I want to share:

When I was telling Raiyan that we only had red, yellow, blue, green and pink colouring so those are the only play-doh colours we can make, Raiyan cheekily said “But mama, we can mix the colours to make other colours!” DUH mama;
I actually bought the wrong kind of salt as the texture would have been better had the salt been finer. I however didn’t expect Raiyan to REPORT it to Jo the next day (who always makes fun of my very frequent “DUH” moments”): “But um sorry Jo, Mama bought the wrong salt!”

Anyway, you can see the process of us making the play doh here. It’s a really good get together activity too you know!

Bossy boy

2008-12-23T09:11:00.002+08:00

Raiyan has always been so demanding and if he wants something, he’ll always insist to have it there and then and until he gets whatever it is he wants, he will continue to repeat his demands over and over and over again until it’s met.. regardless of how busy the people around him are.

Now that his language development is going really great, we are more comfortable and confident to tell him more things and believe he would understand them.

So recently we began to tell him that he is very bossy and that’s not necessarily a good thing. We explained to him what bossy meant and sometimes it does affect him and he actually stops his incessant requests because he knows being bossy is not very likeable.

But at the same time, he has also “embraced” this character of his and to make us laugh when we’re being annoyed with his bibiran demands, he’d say “I’m a bossy boy hehehe”

He seems to kind of accepted himself to be this bossy boy that last night, out of nowhere he started to sing to himself in the tune of “are you sleeping”:

Where is bossy? Where is bossy?
Here I am , Here I am,
I’m a bossy boy, I’m a bossy boy,
Bossy boy, bossy boy

Hahahahaahaa!!!!

Locked In

2008-12-21T19:35:00.003+08:00

In our old house, it was a habit to never hang the door key on the door for fear that Raiyan may lock himself in the room but is unable to unlock it back. Our door style both in the old house and the new house has the lock looking like this:

So it's the type that you can easily lock but once the key is a bit out of place, it would be hard for a child to get it back into the right position to unlock it back.

Which was precisely what happened to Raiyan this morning! Unfortunately, since we moved to our new house, we had forgotten about this previous rule and had the bathroom door key hanging there all this time. We haven't had such an incident in the 4 months that we've been here so I was quite horrified when Nur told me that Raiyan has locked himself in and was crying away not being able to get out.

Alhamdulillah, we managed to calm him down and told him to take the key out and then hand it to us under the door which he understood after a few times Babah tried to tell him. As soon as we opened the door, you can literally see the utter relief on his face and the poor thing said "I was scared I couldn't unlock the door".. Let's hope he's learnt his lesson and won't be trying that again anytime soon!

It could also be a....

2008-12-19T12:49:00.003+08:00

Raiyan’s present programme is seeing him traverse into the world of social language that requires more imagination and lateral thinking so you can imagine it’s been really challenging. So much so that Jo the great has specifically asked for help in generalizing one aspect of the programme- which is making Raiyan utilize every inch of his imagination abilities and think of what an item (particularly small items) can be apart from what it really is. Before this, I’ve always thought he was quite good at this because he always pretended a sofa cushion was a slide and a box as a house etc, but as you can see these are BIG items that he can physically do something on. But when it came to small items, Jo said he found it really difficult to see them more than what they really are.

But knowing how intelligent Raiyan is it wasn’t too long before he started to get the concept of it but it’s still something that we need to generalize more and more. InsyaAllah, this will eventually help him in social situations in the future because his mind won’t be restricted to just thinking literally all the time.

So this morning, I asked him what else this piece of paper could be. It took some hesitation that lasted 2 minutes but soon after, he was on a roll!

It could be a bird's wing..

He rolled it up to become a telescope..

It could be a bridge

It could be a little girl's hair!

He just blew me away because even I didn’t think of some of what he said! Haha! And when I gave him this block of cheese, I was FLABBERGASTED at what he came up with:

1. A piece of pizza or a cake;
2. A top;
3. A bird’s beak; and
4. A tornado

!!!!.. That’s four more than what I can think of! Maybe it’s ME that has the imagination problem!!!

Overworked

2008-12-18T15:38:00.003+08:00

This is poor Raiyan asleep halfway through us doing the listening activity together. In all fairness to him, he just had a 2 hour ABA session with Jo in the late morning and here I was still trying to make him do more stuff.. As you can see on the drawing, he still complied and did what I told him albeit yawning away.. and then before I know it, he rested his head for a split second and he was asleep!

It's times like these that my heart just painfully melts cause I love him so so much.... Thanks for being a dream son Raiyan and I'm sooo proud of you!

Can you handle the truth?

2008-12-16T08:36:00.004+08:00

Raiyan's into his "difficult to eat" phase again and a few days ago he still went on with the pahlaver that his stomach was full and that he had a stomach ache so that's why he couldn't eat his meals. It became so dramatic that he would gag and then run up to us to show the tears in his eyes and a "repeat" of his gag reflex and saying "SEE mama? the food makes me cough and sneeze*!" (*we haven't quite taught him to say "puke" or "vomit" yet so the closest thing he came up with was a cough and a sneeze! Hehe!)

Seeing how sick he did look, I thought okay maybe he really is full or there is something wrong with his stomach so he really can’t eat anything anymore so I caved in and said he didn’t need to finish it. BUT THEN, not long after that I see him coming out of the kitchen with a bowl of chocolate biscuits! That’s definitely not someone who is full or is having a stomach ache is it?!

Of course I know Raiyan is not deliberately lying and that actually he’d say anything just so he can get out of eating a balanced meal of rice, chicken and vegetables – I mean he is a child after all, preferring to choose junk food over wholesome foods! But I did want him to stop talking about having a stomach ache when he doesn’t because it just gives off that “the boy cried wolf” feeling and what if ia ketulahan and then banar kena bagi stomach ache when at first he didn’t have one right?

So I taught him about “lying” and the “truth”. I told him that he can’t be telling the truth when he says he’s full and can’t take any more food and then after that is stuffing his face with choc biscuits. I then asked him if the reason why he didn’t want to eat his meals is because he doesn’t like the taste of it and he said yes that was the reason. So I drilled in him that saying that he doesn’t like the food would be telling the truth and saying he has a stomach ache when he doesn’t have one is lying and NOBODY likes lies. He looked like he completely understood what I was saying and promised not to lie about having a stomach ache again.

You know what’s gonna happen next right? This morning I again caught him not eating his breakfast and I asked him why he isn’t eating it. Raiyan with pure confidence replied “I don’t like burger and that’s the TRUTH!”

LOL! What am I going to do about him??

Rampai Pagi Interview

2008-12-13T17:23:00.002+08:00

Linda has just uploaded the Rampai Pagi interview on to the Learning Ladders blog here for those who either missed it or was not able to watch it. And just in case you can't quite catch what we are saying, there is a slideshow summarising all the points made on the show that you can easily see on the main page right under the main header. Happy watching!

Helloo.. whoops, who are you?

2008-12-13T12:10:00.003+08:00

This one morning when I was dropping Raiyan off from school, I saw from afar this woman who I swore I thought was Jo but upon closer inspection realised it wasn't. It's just that she had the same blonde bob hairstyle, was wearing a pink top and khaki skirt that Jo typically wears and was roughly the same size that I don’t think you can blame anyone, including Raiyan, to make that case of mistaken identity.

But poor Raiyan who obviously got so excited as he usually does when he sees Jo didn’t realize that it wasn’t her and so he just proceeded to tap the woman with a loud greeting- “Hello!”. And as soon as she turned around, I nearly burst out laughing when I saw the slight confusion on his face! But the funny thing is he still stayed on and looked at her as this sweet lady started talking to him “Oh helloooo! How are you? Don’t you look good today?”. Raiyan smiled back to her and said he’s fine thank you and upon seeing that, for a second I actually thought “maybe they do know each other after all!”

After saying bye and being some distance away, I then asked Raiyan if he thought it was Jo and he sheepishly answered “yeeeess”! Haha! And sure enough, on my way out the lady that the Jo lookalike was talking to immediately approached me and asked “Was that Raiyan? I think he thought that was Jo!!”

The great thing about this is that before when his social skills was practically zero, he would have just walked away from that woman simply because he didn’t know her. But in this case, he still had a social conscience to politely stay on and converse back with the lady until she finished talking even though he didn’t know who on earth she is! Well done Raiyan!

Ignoyed no more

2008-12-11T11:51:00.002+08:00

I got left some interesting comments from my earlier post about the abovementioned “emotion” and after much reflection and consideration, I have come to realize that it is in fact unfair for me to expect others to even watch the shows let alone give any feedback on them.

It’s all down to a simple matter of fact that if people are not interested in something, they just aren’t. That’s not necessarily a bad thing because when you really think about it, everyone is entitled to their own opinions, likes, dislikes and of course interests. And in this day and age of there being a million and one things to do in life, one’s interests have to be prioritized and restricted due to time constraints.

When a close Learning Ladders friend told me recently “if it’s not their problem, then they just wouldn’t bother to know”, I was at first disheartened with such a notion because it just sounds so selfish, especially since it will make spreading autism awareness so much harder.

But now the more I think about it, it’s not selfish at all, it’s reality.

All along, I somehow still thought that my friends do have some level of interest with Raiyan and his therapy but I realized that this blog has been around for almost a year and if during all that time, they haven’t mentioned any of my posts to me, that just naturally mean that they don’t read it. And if they don’t read it, of course coupled together with the reason of not having enough time to do so, it just also simply means that they are not interested to know. It is just not something they feel strongly enough to take time out to learn more of and especially since autism is literally so complicated, it would seem like such an enormous feat to start learning and understanding it so they don’t bother to even start. But instead of feeling hurt about this actuality, I’ve realized and accepted that IT”S OKAY for them to be like that because you just can’t force something that’s just not there.

Then it made me think of how interested or even aware I am of other people’s problems. I’m ashamed to admit that actually I have no idea and then I thought even if I am aware, will I really make so much effort to learn more about them when their problem doesn’t concern me? Probably not.. I can see myself coming up with my own excuses of being too busy with my life and my problems too when in fact I could be really hurting that person who expected me to show more interest. So I can see how equally guilty of carelessness I can be too. For a really simplistic example, it’s not like I’m making so much effort in learning about forex or cancer or charity causes for famine in Africa am I? Because it doesn’t affect me, I realize I’m not bothered to learn about them- hence if I consider others to be selfish for acting that way, then that clearly makes me selfish too.

I do believe that self-absorption is slowly becoming the norm and people in general are learning to live completely independent of each other. But that’s not to say that we should just let that carry on. I still believe in the idea of “checking in” with each other once in a while, which I sincerely try to do as best as I can. But I’m sure it’s still not enough. I should at the same time believe that others are doing the best they can to check in but taking into account their own limitations. This is why I value this blog and the internet in general so very much. It’s an ideal way for us to “check in” with each other and see what each other gets up to without having to make the extra time and effort to meet in person or pick up the phone to exchange all the information. Even though admittedly I feel a bit disappointed that some of my friends are not checking in with me through the blog, I’ve realized that I’ve not made much effort in checking in with them in their facebook pages too (how I wish all of them have blogs cause facebook is just too slow to open!). I promise I will try to do that more of that.

So from now, I unleash all these preconceived thoughts about expecting my friends to ask me about Raiyan and the therapy and the society because I have accepted that it is just not something they can see or even begin to understand. If they do ask me, I would be delighted to share but if they don’t, it’s completely okay by me because they do show their interest in my life in so many other ways. At the same time, to feel less like a hypocrite, I will literally check in with them more too.. maybe there’s something going on I don’t know about.. (I hope and pray everyone is fine though!).

Also, I shall not forget those out there who have shown genuine interest, to name a few, like Nisa, Suvi, Fauzi, Muizzo, May, Bev, ciliqueen and more recently Mala, Haryati, Fidah and all the lovely anonymous ones who leave wonderful comments even though as far as I know, I don’t think their lives are directly connected to autism. To restore my faith and determination in disseminating information on autism and to help spread autism awareness I shall always keep in mind the fact that there are still those like them who really do want to learn more and I should really focus my energy in educating them rather than trying to forcefully educate those who are just not interested! But that’s not to say I’m going to completely stop talking about it to the disinterested ones, it’s just at the moment, things are still wishy washy to talk of. Perhaps once the Learning Ladders centre is open, I can invite them for a visit so they can see the therapy themselves. Or perhaps once Learning Ladders is more established and prominent insyaAllah, then it’s easier for them to take notice. Who knows right? All I know is, for me to continue on with this “peaceful” journey of mine, I can’t afford to harbor any resentment, however miniscule, towards anyone, especially my dear friends who I honestly love and care about and I’m sure feel the same way about me too.

Alhamdulillah for this breakthrough!

School Update

2008-12-10T09:24:00.003+08:00

It’s the end of the school term and we are happy to report that the rapport we have with the school is still very encouraging. Raiyan’s school report was very good (I will post excerpts from that in the next post) and so after the quite rocky start to the school year, our family are now more optimistic about seeing him continuing on in school with no major difficulty, insyaAllah.

Of course, the arrangement that we had with the school as explained in this post had to be reviewed and as seen clearly from Raiyan’s report, one can deduce that it did help. However, what we didn’t want the administration to misinterpret was the fact that Raiyan needed the in class support to “coax” him into doing the work and NOT to “teach” him doing the work. Or more specifically, the in class support was there to address his behavioural issues rather than the academic side. Because we know for a fact that his school work is actually extended by Jo and so he is actually far ahead from some of his classmates, we know that Raiyan wasn’t having any problems in actually achieving the academic standards expected of him in class. His problem is when and if left alone, he gets bored and then there is the risk of him either switching off and withdrawing into his autism world OR he becomes disruptive by shouting in his loud voice to get everybody else’s attention. That is when unfortunately he won’t do his work in class even though he KNOWS how to. And THAT is when the in class support becomes useful.

However, his class teacher reported that there hasn’t been any disruptive behaviour for a very long time and she and the assistant teacher are now able to communicate and interact with Raiyan better after having spent some time getting to know him this term. Thankfully, they share the same objective with Jeff and I for Raiyan to start working towards independence. It seems that most of the time, Raiyan IS able to cope independently in class but there are still the odd times when he doesn’t and those are when it helps to have the in class support around. We are just slightly concerned because financially, this may mean that we are paying someone to be around as “back up” where most of the time she would just be sitting in the background in case Raiyan misbehaves. At the same time, we also don’t want her to be hovering above Raiyan at all times because that will delay his independence even more.

So we had a meeting with the Primary Principal, Raiyan’s class teacher and Jo and extensively discussed all of the above. Everyone agreed that Raiyan is more than fine academically already so even if he was to fall back a bit next term due to a change in the arrangement, he will still be at an acceptable position. Alhamdulillah, Jeff and I were so pleased to see that everyone was on the same boat in wanting to see Raiyan start moving towards independence so cutting back on the support will be essential.

In conclusion, we all agreed that Raiyan will only have full support for the first week of term and then this will be halved for the next 2 weeks and after that he will be getting no more support in class and this will be on a trial basis which we all be monitoring closely.

Of course, Jeff and I were plenty elated after that because we were really expecting the school to insist we keep the support because we had assumed that they will argue that it was because of the support that Raiyan had such a good term report. But thankfully, we are blessed with a really supportive, dedicated and understanding class teacher who is now willing to have Raiyan be independent in class- just like any other child. Believe me, from some of the comments I had from the school when Raiyan first started this term, this is very reassuring and comforting for me as Raiyan’s parent to know.

Of course it’s not going to be easy and naturally we are very apprehensive and not completely confident that he will pass the trial with flying colours but the very fact that he’s been given the opportunity to do this already means so much to our family and all of us will work extremely hard to prove that Raiyan can do this! Will keep you all posted!

But for now, enjoy the holidays!! I know Raiyan is! :D

Ignoyed

2008-12-07T19:33:00.003+08:00

Ok so we had our video shown on national TV and we were interviewed on the morning talk show – both of these I had informed beforehand on this blog and just in case the message didn’t get across, I even smsed a number of people I consider friends that I thought were close enough to care about this side of my life to go and watch it.

Unfortunately, rather than moving a step closer in trying to get these friends to understand this part of my life, I have been going borderline crazy going round in circles wondering why none of them (except 2) gave any feedback on the two shows and Learning Ladders efforts in general. In fact, most of them didn’t even acknowledge the sms I sent. And when I did get a response, it was “were you nervous?” “oh I saw you on tv” and “I saw your brown baju and immediately recognized it to be you.”

One side of me does really think that other people have their busy lives and I really don’t blame them if they didn’t watch it or if they did, maybe it was just in the background and they didn’t really listen. In that sense, I am far from a narcissist who is insisting her friends watch the shows just for the sake of ME appearing on TV. The only reason I wanted my friends to watch the show is because all this time already, they have hardly showed interest in me raising an autistic child and my efforts with the society. I just laid that down to lack of understanding which again, I completely do not blame them for because autism is indeed such a complicated issue. Which was exactly the reason why I badly wanted for them to watch the video and the interview because it is there that they can begin to understand what autism is because once in a while, I would really love to comfortably talk to them about it. Sometimes it does hurt to know that this gigantic part of my life, I really can’t share with my close friends and instead here I am sharing it with the world. I wonder if it sounds absurd to some or actually, as I am slowly beginning to accept, is this merely part of “real life”.

I think what bothers me the most is just not knowing why .. I absolutely have no idea why they don’t talk to me about Raiyan, about the society, even the blog.. Do they think I’m just overreacting and that Raiyan is nothing for cause of concern? Are they really so scared of it that the less they know, the better? Am I expecting too much just for a simple “yay! Good job!” ? (which I incidentally got from one galpal-thanks Za and I know you read this blog too.. I appreciate that so much you cannot even imagine!).

All I know is, it is another struggle that I have to go through. To put up a front and to act like I don’t care that they don’t seem to care because in the end, I still believe they are good and dear friends but for whatever reason, I just can’t seem to reach out to them about this. I have to accept that this part of my life just stays with me (and the readers of this blog haha!) and to stop having any expectations anymore for my friends to show interest in it. To give them the benefit of the doubt, I really do believe that there is no ill reason for their lack of concern. They, along with everyone else are really busy with their lives and I’m sure I have been guilty in the past of being careless too.

As you get older, it is so strange how things just turn out to be something that is beyond your control and you just have to go with the flow and accept it. I never expected to be uncomfortable and conscious talking about Raiyan and the society to my own friends but if it’s going to happen, there’s nothing I can do But actually it still isn’t so bad as I made it out to be. I still have the best laughs with them and I still talk to them about everything else and I still trust them to be there for me when I really need them. Plus at least they don't see Raiyan any differently from any other child. And deep down, I still have hopes that one fine day, they will come round and I would be able to talk about this to them all the time without feeling awkward. That time is just not now, I guess.. but wwhhhhyy?? Sob sob..

PS. The title is an emotion invented by Raiyan- a mixture of “ignored and annoyed”. So if you ask him, Raiyan how do you feel when Alisha plays with your toys and you don’t want her to? He’ll say “ignoyed!”

Learning Ladders on TV (Tonight and Fri)

2008-12-03T13:13:00.001+08:00

*I am writing this is in a rush but I intend to elaborate more on World Disability Day when more time permits me!

In conjunction with World Disability Day today, a short movie on Learning Ladders Society which will talk about the children, ABA and the Society will air tonight on RTB1 at 09:35pm and RTB International at 07:30pm and will be repeated tomorrow at 12 noon on RTB1 and 02:40am on RTB International. This video will give a valuable insight of how our children are progressing, you’ll get to hear from Kerri Wilson, our ABA Programme Consultant and of course you get to hear firsthand experiences of families within our society- which of course includes Jeff, Me and RAIYAN!!!

Also, Sharina, Linda and I will be appearing on Rampai Pagi on Friday at 09:35am to talk more about autism, treatment, early intervention and the society.

Happy watching!

Awareness conscience

2008-12-01T10:59:00.002+08:00

I decided to place my Pweshes Philosophy on autism on the main blog page as opposed to a link (which I have noticed have hardly been visited lately) because my sporadic "awareness conscience" has been creeping up again lately.

For those who don't know, and this is especially for overseas readers, "autism awareness" in Brunei is only in the sense that some have heard of the term and when they have, it's usually associated with something depressing and sad. Even now, I still find people getting uncomfortable when I start discussing Raiyan and his condition when I'm trying my very best to discuss it in the most positive light.

Naturally, I still think there is a serious lack of autism awareness over here and this is worrying because without an informed understanding, there are parents out there who still choose to be in denial over their child’s potential condition as they are so scared to just hear the words “your child has autism/is autistic.” Because of that, they decide to wait and wait for their child to start talking and for their child to outgrow their tantrums and quirky behaviours, sometimes until as late as they are 6 or 7. It is a scientific fact that early intervention can help these children so it is unfortunate that just because of the fear these parents have, their children may have possibly missed the boat in trying to get the benefits of the early intervention.

I badly want parents to know that autism is a condition that is “part” of the child and just because you hear someone telling you that your child has autism/is autistic, that doesn’t mean that he or she is now somebody different from who you’ve been cradling and looking after from the day he or she is born. It is a “condition” that can be worked upon through the appropriate education and behavioural therapies. I am not talking about giving the child drugs or any other remedy that will make him better overnight. What Raiyan is fortunate to have is an educational programme prepared by the most amazing behavioural consultant and therapists for him to learn to cope better in this world. Through this programme, we also get to witness how incredibly smart Raiyan is too. And yet, he is still autistic but far from anything depressing and sad, that autistic part of him can at the same time be humbling and a joy to observe too.

And for the public and society in general, please, QUIT thinking that autism is a label for a child and that is something that defines the child for who he or she is because I repeat, it is a MEDICAL DIAGNOSIS and condition. Individuals with autism have their own personalities, their own likes and dislikes, their own feelings and there are millions of autistic adults out there who are thriving in this world so again, parents do not need to be so scared of receiving that diagnosis. What is important in these early stages is to try and work on the disabilities as much as the child can handle and of course within our means and just hope and pray for the best.

I’m sorry, but at this time of better awareness and understanding in other parts of the world, there is just no excuse to not do anything.

Hyperactive!

2008-11-26T12:28:00.003+08:00

There are days when Raiyan feels subdued and tired after coming back from school which I can understand since he’s been working non-stop (with school AND ABA) all morning.

But there are days like these when he just can’t keep still that I wonder if he was fed anything earlier on that makes him sooo hyperactive! If only I can enroll him in gymnastics or something like that!

STAY ACTIVE EVERYONE!

Blowing a Balloon

2008-11-24T11:32:00.003+08:00

This is Raiyan achieving another progress milestone, blowing the biggest balloon he's ever blown! With his slight dyspraxia affecting the strength of his jaw muscles, Raiyan found this very difficult to do before but with the tips given by the speech therapist we saw back in March, which included making him drink with a thick straw, his oral movements are getting better.

The one thing I found difficult to explain whilst he was trying to learn to blow the balloon, was to NOT suck back the air that he has already blown. I mean I'm not completely sure if sucking back the air is a bad thing to do but something involving directly breathing in carbon dioxide was something I just couldn't let go off.

I think it was to do with a number of things that Raiyan just couldn't get the concept of what I was telling him

- difficulty with following a negative instruction

- not knowing what "air" is as it wasn't a visual thing he could see

- not understanding what "sucking" is

-not fully understanding "before" and "after" (cause I kept saying, you take the balloon out of your mouth before you let go of the balloon and you can only blow into the balloon after you take a breath etc etc).

In the end I just had to teach him to blow the balloon on a step by step basis (though I think he was a bit upset with him not being able to freely blow as how he wants it!).

First you blow, then shut the balloon, then blow, then shut etc etc..

I'm still not sure whether it's ok to suck back the air? If it is, then I don't have to be so overly concerned! Help! Any comments are welcomed!

This is him "shutting" the balloon

This is him "blowing" the balloon

Ta daaa!!! Raiyan's biggest balloon to date!

Week 45 Progress

2008-11-22T12:24:00.002+08:00

Raiyan’s progress has been coming along really well. What we have been working on the past 2 weeks:

1. Auditory Memory: Here we are training Raiyan to really listen to what we are saying that then later on ask questions to see if he can recall what he heard. A few months ago, we checked his auditory memory by making him remember a sequence of things so this is definitely a vast improvement from then because he actually understands a story we tell him and getting him to remember. An example of a short story would be “Meg goes to the grocery store. She buys apples and bananas and pays for them at the cashier.” Then we ask Raiyan “Who went to the grocery store” or “Where did Meg go?” and “what did Meg buy?” and “who does she pay to?”, all of which Raiyan can answer!

2. Opposites: This one we are merely revising because he has been sporadically doing opposites all of these months so it’s a matter of consolidating all the previous ones he has learnt and to make his knowledge of them solid, which they are! He even knows “distinct” and “blurred”!

3. Following directions conditionally: On top of making Raiyan listen carefully to instructions, we are also making it one step harder by making him do a follow up action if what we are saying is correct. For example, we tell him “Raiyan, if you are wearing a blue shirt, rub your nose”. Of course, if he is wearing blue, it would be correct for him to touch his nose. But he didn’t quite get this so easily because even when he was wearing red, he still touched his nose! Well you can’t really blame him because all this time all we’ve done is tell him to do something! Hehe.. but he’s gotten the hang of this already and in fact, he’s started to tell US conditional instructions too!!

4. Imitates peers: Jo would bring a fellow classmate to accompany Raiyan during some therapy sessions and make him do or say certain things that Raiyan has to follow. So far, Raiyan can easily follow gross motor movements and actions but is still working on following verbal responses.

5. Comprehension: This is a follow on from item 1 above, because we would make Raiyan hear a story with a corresponding cartoon illustration and then follow instructions we tell him with regards to the picture. Eg. We use a picture of 3 factory workers in a car factory assembly line so after making him recall things from the short story we tell him, we go on to tell him to do things like “draw a line next to the chains holding the door” and “draw a circle around the man holding the paint can”. Notice they are very specific instructions that REALLY need tests his listening skills and auditory memory skills.

6. Visual Discrimination :We use this brilliant book called “1001 Wizard Things to Spot” which is kinda like Wally because they contain very detailed and crowded pictures and you have to spot and count a number of things within the pictures. It’s really good for proposition languages too because when Raiyan can’t immediately spot something, I can say, it’s on top of the shelf, under the bottle, next to the book”.

7. Listening to others’ conversations: Of course we are constantly working hard with the social aspects too so Jeff and I have been making Raiyan sit in and listen to our conversations and then we ask him “what are we talking about?” and ask more detailed questions about our conversations. Raiyan tends to then go off and talks about himself so we have to try to prevent that and make sure he listens to US and talks about US first before he starts talking about himself!

Behaviourally, he’s been really good for quite a while now where most of the time, he complies with what we say but not without some negotiations first. Lately, he has been stimming by putting his fingers in his mouth. I notice he does this as soon as he gets nervous or excited. We don’t really have a big problem with stims so long as they are controlled but with this one, we can’t help worrying about the fact that his hands are usually not clean when he’s sucking away on them. We told Jo and she said that next week, she’ll try and get a book on “germs” and hopefully we can teach him something from that book.

He has also improved with trying new foods and this morning, he finished a egg mayo and tomato ketchup sandwich with no drama at all!

Alhamdulillah for the progress! Till next time!

The Power of Fwenship

2008-11-21T01:10:00.003+08:00

It's amazing how much Raiyan just adores Adik and vice versa. We even joke amongst ourselves and with Jo that when they are together, they are not autistic! Seriously!

They are always soooo excited to see each other that they must always greet each other with a hug..

They are always soooo upset to leave each other and after hugging each other good bye they both mutter to themselves "but I miss you..."

They even have fights and not speak to each other for a while and then make up and say sorry to each other..

One of them actually gets hurt if the other lashes out at the other... like really "hurt".. not the typical "tantrum" cry/scream, but a really sad pitiful "you hurt my feelings" kinda cry..

Since they are in different classes at school, they are constantly in search of one another during break time and will get distressed when the other is not around..

They are forever talking about each other to their parents or caregivers at home..

And the best part is they talk and talk and play and play non-stop when they are with each other..

I am always soo thankful for Raiyan to have found his "soulmate" at this early age because it is just amazing how similar they are in so many ways! They even had the same stims when they were younger!!! They just seem to understand each other sooo well. Sometimes whenever I start getting sad about the fact that Raiyan may not be able to have many friends or form a deep relationship, I'm always comforted with the fact that whatever happens, he will insyaAllah always have Adik..

You can read about Adik's birthday party that we went to just now at the pweshes diaries blog! Happy Birthday darling Adik! We love you soooo much!!

Learning Ladders Committee Meeting

2008-11-21T00:47:00.002+08:00

LL society had its committee meeting at our humble abode yesterday as we have quite a number of things on our agenda and plans for the next few months. Of course, it's always lovely to meet and catch up ( I had actually missed the last official society meeting when I was away in Washington) and it was also a fun excuse for the kids to meet up and play! Unfortunately Raiyyan I and Hakeemi had therapy sessions so they weren't able to come.. but Adik and Sarah of course had a complete blast with Raiyan and Alisha!

As some of you may know, we were given a substantial amount of money out of the proceeds of the recent Toyota Classics Event so we decided to give NBT/Toyota as a token of our appreciation, this car that was made completely by our amazing "Lego Builder and Puzzle Solver" Raiyyan Iman Shamsuddin:

If you zoom into the picture, you can read some wonderful facts about this special boy! And of course you can marvel closer at his incredible work! It's simply unbelievable for a mere FIVE year old!

Oh and I can't resist making these if any of our visitors subtly mentions if they will make an appearance! Ugh, Jeff had to insist to put it right in the middle of the dinner table where we were having our meeting and it was soo hard to concentrate! Where at first they were meant for the kids, in the end we realised they were really meant for the big kids cos we almost finished them on our own!

These wonderful kids never fail to put a smile on our faces.. here they are pretending they are on a boat and that's Adik rowing..

And last but not least, here are the committee members working really hard! (Though the ladies do tend to digress here and there.. hehe.. thank god for Jeff to help stray things back into the right direction!!)

Just to share, we are planning for some activities in the next month, including something in conjunction with International Day for Persons with Disabilities and more general awareness events. We are also planning a BIG event in February in collaboration with the Special Education Unit and lastly, we are also planning for the opening of our Learning Ladders Center which will also insyaAllah happen verry soon! Wish us luck! We need all the support we can get!!

Personality or Trait

2008-11-16T12:55:00.002+08:00

After all these months of ABA therapy, we see Raiyan’s personality shine through more and more every day. His temper tantrums are long gone and he now expresses his disappointment by just crying in a tolerable volume and he would always stop after some efforts at negotiations to make him feel better. He is definitely not as fussy as he used to be and really doesn’t mind when things don’t go exactly as planned and he is also more welcoming to trying out new things. He is also very imaginative with his playing now. Just this morning, he was scooping out “vanilla, banana, chocolate and strawberry ice-cream” for everyone using his play-doh set. I point these characteristics out because how Raiyan was before the therapy in these areas are well known to be traits of autism so I guess we proved science right that through the therapy he has been getting, he has come out a more open minded person after overcoming the need for routine and the rigid resistance to change.

In his earlier years and especially since we were oblivious to any suspected disorders, we had always just accepted that it was his personality that made his behavior seem to border OCD! He would insist to change his clothes even if there is a tiny spill on it. When being called over, he would always first put back his toys on the shelf and arrange them neatly before his mind could rest and come to us. He would only eat his meals using the same set of bowls and cutlery. He would insist to have all buttons buttoned up, whether they’re his or others. He would freak out if you change the lyrics to a song he knows. But now, I can honestly say that none of these things bother him anymore. Apart from the constantly messy playroom, of course we are happy to see this happen! It’s such a relief to not have to constantly worry about his strict rules and we are definitely altogether more relaxed generally when compared to before.

There are still some things that others can easily construe as the autism, such as the ego-centricity in that everything has to revolve around him and he doesn’t really get the concept of others around him needing to do the same things as he. There’s still the nonchalant stubbornness that if he decides to not want to do something, he just simply WON’T and there’s hardly any other way around it. Loyal readers of this blog would know that there is still the obsession with the animals and how not a day goes by without animals playing a big role in his life. And much to our astonishment, he has retained much of his amazing memory skills! Just last week, he told Jeff how he wants to go to Jungle Gym and play in the ball pool and on that note, he also told Jeff that the ball pool has 7 different colours altogether in it. Though I don’t remember exactly what the colours were, I can tell you that they were completely random colours (in case you think he just copied off colours from the rainbow) and Jeff checked and Raiyan was basically right about them! Isn’t that bizarre? I’m sure one would still think THAT as an autism trait.

I guess with everyone knowing Raiyan to be autistic, that stereotype will always stick on him, despite everyone close to him being more inclined to think of it as just being HIM and not necessarily the autism. At the same time, with more therapy do I risk him losing more of these so-called “traits” as how he has lost the earlier ones I mentioned?
It really is a fine line between trying to help Raiyan flourish in this world independently but at the same time to not take away the very essence of him. Of course I see how terrible it is for anyone to be told to change the very essence of him or her. As how the neurodiversity group has time and time again advocated, it is like others telling you that you’re not good enough for this world as you are and that you have to change for it by possibly sacrificing your own personality.

I still think that no one can ever know where that line lies and no one can ever really be sure as to when it is a trait that you want to try and remove and when is it really a personality that cannot and should not be touched.

All I know is even within myself there are some flaws of me that I’ve always tried to battle and improve and yet have found it to still be stubbornly there. And I do find myself getting slightly mentally disturbed when I am pressured to get rid of it. But that’s not to say that I’m just going to carry on having my flaws and seeing other people get hurt by it. I’m still trying to overcome it as much as I can but at the same time remind myself that God has made me like this and I shouldn’t beat myself up too much about it.

And that is where I try and draw some lessons from to guide me with Raiyan too. Of course I can never be too sure what is an autistic trait and what is really his personality. But so far, with whatever aspects of him that the therapy has worked on, all that matters for me to see is that I have never, in all his life, seen him happier than he is now. At least that much I’m sure of.

Hope Won

2008-11-11T18:22:00.005+08:00

When Barack Obama won the election last week, Oprah Winfrey said “Hope Won.” For parents with an autistic child especially, hope plays such a primary role in our lives that I’m sure for some, Obama’s journey and victory resonates a somewhat familiar feeling because we ourselves are firsthand witness of what hope can achieve despite the uphill struggle we have to endure in raising our children.

Both Obama’s campaign and victory could impart so many things that we can learn from and take away positively for us to start looking forward to a brighter future:

He proved that if you are smart and have an in-depth knowledge of what you are doing, you will succeed.

He showed how you can start from the bottom with nothing, but with continuous tireless work, you will get to where you want to be.

In the face of shallow provocation, he exudes patience and a gentle toughness and avoids regrettable acts by maintaining calm and choosing to think things through before taking action.

Those who voted for him demonstrated how very possible it is for people and society to be open to change and to depart from something that is traditionally and comfortably acceptable in their minds.

Both Obama and those who voted for him encouraged others to not fear difference or diversity despite the repeated personal attacks on him by his rivals in an attempt to instill fear of something different or unfamiliar. And throughout, Obama demonstrated an unruffled demeanor and pure classiness when sticking to the issues and choosing to not retaliate even an inch to all of those appalling attacks.

All of the above principles, Obama elegantly encouraged and upheld consistently with the simple message of hope.

On top of the daily struggles we autism parents go through in raising our child(ren), unfortunately I have also found that the autism community unnecessarily contributes more to these heartaches and headaches with its own politics and war of words. It is quite difficult to find an objective point of view on issues that range from the choices of treatment to the risks of vaccination without also having to read judgmental and harsh comments deriving from opinions ping-ponging from one to another. One page out of Obama’s book that we can certainly learn from is to try and understand everyone’s points of view objectively, to listen with an open heart and an open mind and to steer away from jumping into conclusions or making rash decisions and judgments over the actions of another parent or child. We have to learn to set aside our petty disagreements and learn to find and embrace the common ground we have amongst ourselves and that is the hope for a better future for our children.

I have had my fair share of bumps along this pweshes journey and I don’t expect them to stop any time soon. But in a twisted way, I have been thankful for the episodes that I’ve had because it was through those experiences that I have been taught the power of hope and faith that things will in its own way look up and get better, so long as you work hard and carry on with the best of intentions. And Alhamdulillah, hope has blessed us and rewarded us with Raiyan’s amazing progress every single day and with this progress, we are more than happy to share our story and offer the same hope to other parents.

That’s why I think I have been so passionate over Obama’s victory to the extent that I’d get defensive towards skeptics who write me off as another starry eyed “fan”. I passionately and wholeheartedly believe in hope, not only in myself but more so in others. This year alone, I have seen strangers joining together and freely offering empathy and compassion to one another. I have personally seen selfless generous souls making contributions with no apparent benefit to themselves. I have seen people react sensibly in the face of diversity. I’ve seen the pure dedication and tremendous hard work of Raiyan’s therapists in everything they do. And I’m still overwhelmed with the amount of support I’ve received through this humble blog of mine.THAT’S why my enthusiasm for Obama cannot be completely and superficially construed as nothing more than a naïve and easily led fixation because I have learnt from personal experience to truly believe in the powers of hope along with hard work, determination and a pure heart (hati yang ikhlas).

Every day from now , I urge other parents to not stop working, not stop campaigning, not stop learning, and most importantly, not stop hoping. Hope is what helps us get through the tough times but with every sweat and tears that we put into our efforts we also get our shares of joy and appreciation. And from what we see with our very own eyes on every single day and especially on that momentous night of November 4th, indeed, hope CAN and DOES win.

Ongoing Battle.. Will it ever stop?

2008-10-28T14:47:00.001+08:00

Lately, Raiyan has been difficult during mealtimes again. There was actually a period of time when we relatively didn’t have any problems with getting him to come to the dinner table and eat his meals. Admittedly, the condition of the TV being on is a pre-requisite on our side for him to happily clean his plate.

Feeding him are times when I get confused as to which road to go. Because if I were to follow his pattern growing up, the main reason why Raiyan always refuses to eat is because he doesn’t want to stop whatever he is doing and move to the dinner table. Even the act of chewing his food seems to take up such an incredible amount of effort by him. But I know this to be the reason because every time we successfully coax him to finally eat, he would always clean his plate.

Simultaneously, there are times however when he does look genuinely full and so there have been occasions when even after successful coaxes, he is not able to finish his meal.

So that’s why his latest act has really thrown me off and has made me feel completely unsure as to what to do next. NOW, whenever we ask him to eat, he would say

“But I don’t want to eat, because I am full. My stomach feels funny and otherwise I get stomach ache. Look at my stomach. It’s full!”

The thing is I know that half of what he’s saying, he got it from me cause he heard me saying it just last week when I suffered my bout of diarrhea. So I can’t help thinking he’s just using it to get out of eating not because he’s really full but because it’s due to his usual reason of not wanting to shift from his present activity. I also think that he can’t be full since he hasn’t eaten anything for the last 2 hours.

BUT, on the other hand, I also think that maybe he really IS full even though he hasn’t eaten for 2 hours and I shouldn’t compare a little boy’s stomach to mine. I’m so confused!!

And one last thing, I have no idea how to really describe what a stomach ache feels like because for now, I don’t believe that he really does have a stomach ache. I think I might just run through the Boy who cried wolf story with him later!

Sorry this post had me going round in circles! It’s just me venting my frustrations with Raiyan and his meals that has been going on for the past week.. I hope it will pass soon!

Thanks Pweshes Babah

2008-10-24T00:42:00.005+08:00

Raiyan's ABA programme file suffered a wet accident last week which dented the actual file but thankfully the papers inside were managed to be saved. Mind you, even if this mishap didn't occur, I think it was high time that the file needed to be replaced cos it was getting kinda "buruk.." and if you know Jeff, you would know that these kinda thing really bothers him:

So this accident was a good reason for Jeff to give Raiyan's file a make-over and did he go all out or what! Not only does his file now has a cover with Raiyan's picture and our phone numbers for lost and found purposes, the back cover has Raiyan's weekly timetable on it and inside comes complete with this index guide! Sigh, what will I do without my pweshes babah huh..

Jo said the file seems so posh that she didn't dare write in it at first! Haha!!

Week 41 Progress

2008-10-23T23:59:00.004+08:00

Raiyan’s programme for the past week has been really tough so whenever in the past I have ever felt comfortable with where Raiyan is at, I am constantly reminded by these difficult times that we really do have a long way to go with Raiyan. But no matter what, we are determined to get through these difficult times and again, we are always thankful for the fact that Raiyan seems to be coping with everything around him really well.

The stuff that we are working on:

1) Language extension:- the subject matter for this week is “sports” (whereas last week was on nature, which he amazingly got just like that- *snap of a finger*!). Sports isn’t something particularly familiar to him but he still seems interested nevertheless and again, it’s all about familiarizing him with things that other children would probably learn more naturally from TV, like watching tennis, golf, swimming etc. (Note:-I wish the Olympics has reruns!). Right now we are just working on Raiyan naming the various sports and the next step after that would be asking him questions about the sport like “what sport do you play with a racket?”

2) Storytelling:- With the story starter pack, we get picture cards with an animation and a few words describing it and Raiyan is expected to elaborate on the story according to his imagination. This has also been difficult for Raiyan because he always needs something visual for him to describe something or at least a familiar story that he can relate to the cards but since these cards are very new to him he would always just resort to answering “I don’t know” to everything!

3) Emotions: Last week we were working on identifying emotions from somebody’s voice where some of them he got pretty quickly, like happy, excited, angry and tired. The more specific ones like bored, worried, in trouble etc we still have to keep working on. For this week, he is given a set of pictures of people in situations where he has to guess how they are feeling. This is also hard work as Raiyan seems to only remember the basic ones like happy, angry, excited and tired.

4) Homonyms: Raiyan has to learn that a thing can have more than one word for it and a word can also have many meanings (through flashcards). This one he can do quite well and I am also trying to generalize this by introducing more malay words to him at home.

5) “Ask” and “tell” instructions: Raiyan doesn’t really know the difference between asking and telling so this is something we try and generalize at home as much as possible. He’s slowly getting this one but still gets confused at times!

6) Listening: This board game has a cd playing certain sounds in different areas of the house and Raiyan has to match the sound to the picture. Eg. Sound of a hairdryer matching a picture of someone drying her hair or a sound of vegetables being cut being matched to the right picture. This one I was very surprised to find him getting 85% of them right on the first try!

Raiyan has mastered recently (though sometimes still need a little teeny weeny prompting):

1) Syllable drilling: He can tell how many syllables there are in a word
2) Advances pronouns: He knows to appropriately use my, your, his and her
3) Language extension: He knows to label practically anything to do with nature like mountains, lakes, waterfalls and he knows to distinguish between nature and man-made. I swear he was so natural at this that we really think his calling one day is to be a tv host for the discovery channel!
4) Describing topics: He can tell you 5 things about his brother, going on an airplane, a birthday party, hari raya, going to the cinema and his mama!

Raiyan is also coping very well in his classwork according to Jo who shadows him there and he is also by far the best reader as he is now reading level 5M (!!-When the average for the rest of the class is on 3). And because he is so special in his reading skills, he gets special picks for his home reader books (ISB sends a book every single day for the child to read which will then be logged on to a register signed by the person he read the book to) AND he also gets to borrow 2 books from the library instead of just 1! I really hope he can learn a lot of things, especially social situations, from all the stories he reads too.. Anything to half the job for me!

Alhamdulillah for everything! Til next time!

Clutter Free

2008-10-23T22:53:00.002+08:00

I decided to re-do the whole layout of this blog all over again and decided to go for a more "calmer" look and fell instantly in love with this new header picture. The right hand corner actually looks like a farm which is again apt for Raiyan since he loves animals so much.

I'm having some difficulty with placing some things in the boxes at the bottom of the page and my active meter counter is still not coming out so I still have to work on this page so be prepared for further changes! Nevertheless, I'm going to keep all the sidebars stuff at a minimum so that readers can focus more on the actual posts.

Many thanks and read on!

Faces of Autism

2008-10-14T00:02:00.002+08:00

I discovered this absolutely beautiful blog about a week ago and immediately sent Raiyan's pic off to be included in it. It's an honour to see Raiyan featured along with some of the most adorable, gorgeous and brilliant children out there in the world. Check out the link on my top tab in my right hand column or you can see Raiyan's page here.

Now who can still say that autism is tragic???

Speech and general major milestones – after 40 weeks

2008-10-13T23:12:00.002+08:00

I actually can confidently tell people that Raiyan is talking now. 10 months after not knowing what to answer to something as simple as how are you or what do you want, Raiyan is at a point when he can actually have conversations with others. Of course, the length of this conversation depends on who he’s having it with. If it’s with me or Jeff or Kerri or Jo or Tracy who spends the most time with him, we would know exactly the kind of words and use of language that Raiyan would understand and we would know how to be creative in asking him something with a more confident expectation that he would be able to answer. For example, when I ask him what he did in school, it is still difficult for him to answer when I ask “what did you do in school?”. This is because it’s not specific enough and he just wouldn’t know where to start. So his answer to that is always something as general as “I’m in Mrs Want’s class” or “I get golden time” or “I play with friends” (which is still excellent by the way!). So to get specific answers I have started to ask him systematically like “Raiyan, after you said bye to me, what did you do?”. Then he can easily say “I play with Fadhil and we make a cake with playdoh” or “ I play with Haziqah and make animal jungle”..That’s how far as it goes for now but it’s a start! :D Remember this post-how far he has come and how far have I come from then huh!

I can even have actual phone conversations with him now which makes me sooo happy! Before this year, he wouldn’t even go near the phone or at best he’ll just sit there holding it and wait until he’s dismissed! When he started talking earlier this year, he would just talk away to himself without paying any attention to what I have to say on the other line. But now, this is my conversation with him just 2 days ago:

(The one day I didn’t go back for lunch because I went beraya to my colleague’s house)
Me: Hi Raiyan!
Raiyan:Hi Mama! Where are you? I think Alisha and Addin are waiting for you. Alisha she’s crying because she waiting for you. You don’t leave us mama.
Me: Oh sorry, I have to go somewhere today but I’ll come back later.
Raiyan: Ooh-kay. But Alisha and Addin she wait for you come back...
Me: Sorry. But only Alisha and Addin? Not you?
Raiyan: Yees, me toooo!
Me: What did you do this afternoon? Before I call you?
Raiyan: I was playing with the computer.
Me: Were you playing with animals?
Raiyan: Whoops! Sorrryyy.. hehe (giggles)
Me: Do you know what I’m going to say?
Raiyan: Too much animals... hehehe..sorrryyyy..

Oh and speaking of animals, I have the most hilarious story about Raiyan and his animals conscience. Jo was telling me that in IT class the other day, she left Raiyan alone with the computer whilst she was accompanying someone to go to the toilet and when she came back, she saw he quickly minimised a box that was open on the screen. And when Jo came closer he kept wanting to cover the screen and tried to distract her by asking her “Jo, do you want to go to toilet again?” and “Erm, I think Fadhil need your help.”(!!HAHA!!). Of course Jo just ignored him and insisted to open the window on the screen and of course it was none other than animals. But the pweshes thing was Raiyan totally pretended to be shocked and said “Hah! Who put that there?!!”

Can you imagine the cheekiness?!!! All this time, I really thought that autistic children can’t lie but look at what Raiyan has achieved! I say achieved because even though I instinctively got worried and thought “omg my son despite the autism is still a liar!”, Jo said that the thought process that goes behind it is a lot for an autistic child so really this is actually a massive improvement for Raiyan. Plus she assured me that typical kids do this kind of things all the time too (little white lies), so I relaxed and took the positive side of it-Raiyan is clever enough to lie! Hahaha!

I have never on this journey wanted or even expected for Raiyan to turn out “normal” and I’m not saying that he is actually typical now but I have to say, none of us expected for him to improve so much within the last 10 months. Maybe it’s just Raiyan, maybe it’s the ABA, maybe it’s both. But nobody can deny the benefits of the hard work and perseverance of everyone around him, especially his pweshes therapists that have led Raiyan on this wonderful journey all the way to this wonderful point. Sure he still has his challenges in the social aspects and his language is not 100% there, but I swear when we went around for Hari Raya in the last 2 weeks, either no one suspected he was any different because they don’t know him or for those who know him, they just couldn’t believe to see how much he has improved.

We still have stuff to work on and I don’t expect that these things will go away forever. For a whole day filled with going to 8 houses for hari raya, I still had to tell him at the beginning and talked the whole day through to him. He still needs to be coaxed to finish his meals or try out new things. He still has difficulty confronting large crowds of people. He still wails when others touch his toys. He's still needing full support in class. But to me, the biggest hurdle has been crossed because at least he understands us when we explain to him why this or that needs to be done. And at least now he’s able to tell us his feelings so we don’t have to second guess him anymore.

I know it seems like Raiyan’s journey is too good to be true and even when I read back this blog and think back to how he was like before his diagnosis, I just think it’s so unbelievably amazing how much he has progressed. But I also know that other children within our society have improved too, all in their own individual and equally wonderful distances.

I just really really want to assure any worried parents out there that there is still so so so so much hope after receiving that diagnosis. Learning Ladders are working really hard to make more available and more accessible the therapy that we are providing our children because it just breaks our hearts when we hear of other children with such familiar stories and still not being able to communicate after 3, 4, 5 and even 6 years old.. It frustrates us because we know now that something can be done and these children can improve. Maybe not to the extent of the speed of Raiyan’s improvement but at least some improvement and within time, lots of improvement and that’s something worth trying for at least right? I pray for the day that no parent in Brunei needs to be terrified or be in constant denial about getting that autism diagnosis anymore. It’s vital that everyone understands that the earlier a proper diagnosis is made and the earlier an effective intervention strategy that uniquely caters for the child is started, insyaAllah the chances of this child to be able to lead an independent life in the future will be good. And these children with their amazing abilities can actually be given the opportunity to extend valuable contributions to Society and to Brunei as a whole- I think it just might be possible for Raiyan to open Brunei’s first zoo one day! Amin!

Diagnosis Assessments

2008-10-09T17:20:00.001+08:00

For interested parents, you can actually obtain a professional diagnostic assessment for developmental delays for your child now. Please contact Linda at Learning Ladders for more details.

Raiyan the Author!

2008-10-01T21:13:00.004+08:00

Raiyan has recently started to learn to make up his own stories. It began with him being able to tell a few things about a certain topic, which he can easily do now. So when it naturally evolved into making up his own story (which is not only good for his expressive language but also for his imagination and creativity), Jo the Great went one step further and made him write the story down too. Now before I have left you amazed with your mouth open, that's not exactly what happens. What happens is Raiyan would first tell the story to Jo and then Jo will write it down. She will then read it back to Raiyan (without showing him) and he has to write it all out. And as a reward, he can draw something in the end.

Oh and it's no surprise that all of his stories below involve animals!

"Once upon a time there was a chicken who laid an egg. The egg fell in the grass and broke and the chick was talking to the mummy. The baby chick said Im hungry mummy. Mummy gave her some bread and turkey."

"If I had a wish, I would make a wish to live in the jungle. I would sleep in the lions den. I would eat meat and bananas and corn. I could swing through the trees with the monkeys and swim and stomp with the elephants. The end."

"One day there were 2 cars . They were raceing. They passed the farm and the zoo. One car crossed the finish line and the other one didnt because it had a flat tyre."

Brilliant!!

Autistic/Has Autism-Does it really matter?

2008-10-01T20:45:00.001+08:00

In one past post, a commenter actually accused me of not seeing Raiyan first before the autism because I call him “autistic” and not “with autism”. I was slightly taken aback by this accusation, especially because I have used the terms “autistic” and “with autism” interchangeably. In fact, didn’t she see my blog description “Heartwarming tales of a pweshes boy with autism in Brunei”?

Can you believe there are actual debates(on top of every other endless debate on autism) over the usage of these terms? Frankly my humble opinion on it is it makes no difference which one is used. What I hate though is when a parent judges another parent based on their choice of which term they use.

The reason why some people prefer not to say “autistic” is because it gives the impression that autism defines the child and that is ALL he or she is, whereas if you say a child “has autism” then it seems clearer (I guess..) that the child is his own person who happens to have autism as part of him.

You would know from reading my pweshes philosophy that I have always thought that autism is a part of Raiyan and at times is actually a large part of him. But I still do not think that Raiyan equals autism and nothing else. And it certainly doesn’t mean that if I call him autistic, my philosophy is any different. To me it is just a different use of language where “autistic” is an adjective and “with autism” makes the autism a noun. It means the same thing!

For example, when you use an adjective to describe others such as “she is bossy” or “he is creative” or even something not nice like “she is fat”, you are not defining that person to be ONLY smart or funny or fat right? And wouldn’t it be strange to call them “a girl with bossy qualities” or “a boy with creativity” or “a girl with a heavy weight?” Doesn’t that sound weird?

So please, if the next time anyone feels the urge to tell another parent off or judge them just because they use “autistic”, please give them the benefit of the doubt that most likely than not, it is simply because it’s easier and shorter to say.

And for others, who hear a child being described as “autistic”, give the child the benefit of the doubt that that’s only an adjective to be used of his or her character at times but it does not FULLY make up who he or she is.

Nobody likes to be defined by a label anyway because every human being, disabled or not, has their own unique qualities that contributes to this beautifully diverse God given world. The only label you should always call another by is actually really straightforward-their name!

Too Much Animals!

2008-09-24T11:08:00.001+08:00

Raiyan still really loves his animals but far from being obsessive about it, we see his love for it more as a hobby and as something he can do to really make him happy. I mean everyone is entitled to have that right? I myself find so much comfort in browsing through US politics news at the moment that I could literally spend hours and hours reading up on Obama V McCain so of course I would feel like a hypocrite if I stop Raiyan from doing the same thing with his animals. The key point is to control the quantity of it so that it doesn’t take him away from other things he needs to do.

But with him being able to understand what we tell him now, Jeff and I have begun to tell him “too much animals Raiyan” when we genuinely feel like it’s getting a tad excessive. And the funny thing is Raiyan seems to totally get our complaints because we have noticed that he’s developed a conscience on this.

Take last Friday when he was playing some animal game on the computer and so I told him to play something else apart from animals. He giggled and said “okay.. too much animals..” (like “ I know, I know I’ve been playing too much animals when I’m not supposed to”). And then later on in the day (after having a 2 hour ABA session) he went back to the computer but this time, I sat next to him from the start (without any intention to check up on him at all mind you!). He nervously turned to me and said “Mama, can you get out of the room please?” Of course it immediately clicked to me that he wanted me out because he wanted to continue playing his animal game! Lol! But I’m so happy to see that he realised he wasn’t supposed to be playing with it after what I told him earlier! Seeing how he worked so hard during his 2 hour session and since I know he himself realises that he needs to reduce his animal playtime, I let him play with it anyway. :D (but for just 15 minutes..)

But that’s not all folks. Anybody that knows Raiyan would know that you don’t get off that easily with him as sometimes he has his own arguments up his sleeve to throw back at us. Yesterday, Jeff told me when he picked Raiyan up from school and Jo was there, Raiyan was telling Jo “Jo, Babah said too much animals..” and then Jo said “well I think it’s not really your fault since you’re constantly surrounded by animals anyway”(it’s true though isn’t it, and this is especially so if you are a child because in his classroom alone, there are at least 20 different types of animal “thing” to see). Upon hearing Jo’s response, Raiyan cheekily turned to Jeff and said “see!” and gave a POUT on top of that too- all to prove the point that it’s not entirely his fault that there are “too much animals!”

And to add weight on to his point even more, when we were at my sis-in-law’s place, he was given a pillow that had animals print on it to which he called out to Jeff “Babah, SEE, this has animals toooooo...” (Again, to prove his point that too much animals is NOT necessarily his fault!) Ain’t that the cuuuteesst thing?? Ha ha ha

Things can only get better

2008-09-24T10:41:00.001+08:00

It’s no secret that Raiyan has had a quite rough start to the school year. And I have been quite honest with my own feelings in handling this difficult time in a few of my previous posts. Sometimes I do feel like I should just be thankful that Raiyan IS in school and so I should just continue to feel highly indebted to ISB for still accepting him despite the mayhem he seems to be causing. But on the other side of the coin, I sometimes still can’t help feeling like Raiyan is totally manageable if one is to take the time and learn to handle him the right way and so I can’t help thinking that all this drama is actually unnecessary and preventable.

To classify dealing with these battling emotions on an almost day to day basis as being highly nerve-racking is not exactly an exaggeration. This on top of being completely insecure and uncertain of Raiyan’s future in a school we are unsure favours his presence or not.

Our feelings were therefore muddled upon receiving a letter from the school last weekend requesting a meeting to address Raiyan and his issues in class. On one hand, we were pleased that finally some level of communication between the parents, the teachers and the administration can be established so we can start avoiding the convoluted messages we’ve been getting before this (you know where we are told everything is fine but then we hear something else from Kerri or Jo). But on the other, we were tremendously apprehensive about finally confronting the issue head on for fear that this may be the opportunity for the school to once and for all, inform us of their inability to continue with Raiyan and so we gotta start packing... or at the very least, we were suspecting that the school wanted to ask for full time support for Raiyan in class which would obviously mean added expenses on our part.

Alhamdulillah the meeting went well and better than we expected and it goes far to show how important good communication is. Instead of reasons of not being able to cope, Raiyan’s teacher had requested more in class support for Raiyan because she feels Raiyan, being incredibly bright, has the potential to go far with the right support and she fears that he will be short changed if the support is not there. And instead of needing FULL time support, she merely asked that he get the support during the crucial times of the day when presently, Jo is only around during times that Raiyan may be able to cope independently.

We discussed lengthily many options to try like:
-shifting the timetable of Jo’s presence in class
- using one of Kerri’s trainee as additional support but at a lower cost
-reducing his ABA hours and increasing in class support hours and
-picking Raiyan up earlier from school

all whilst maintaining the amount of subsidised school fees we have been paying this term AND the costs of his ABA therapies to a certain cap.

So this morning Jeff managed to narrow down 2 options to propose to Kerri and Jo and hopefully we can start either one after Hari Raya. The school has also agreed to review the whole issue again at the end of the term which may mean that if Raiyan is settling in better, there may be less need for in class support and then we can start increasing his ABA hours again. Hence we are happy to see that the school is not expecting Raiyan to have support permanently.

But best of all, the meeting has really helped put Jeff and me more at ease about the school’s impression of Raiyan and how he is perceived by them every day. Sure he is hard work but Alhamdulillah, his teacher genuinely does look like she has Raiyan’s best interest at heart. Plus the fact that she thinks he is incredibly bright and he can go really far is always comforting for a special needs parents to hear as another person other than us has managed to see Raiyan past his label for who he really is. Something we hope more of others will be able to do. This has surely helped me in this “peaceful” journey of ours and hopefully things can only get better after this..

Week 36 Progress

2008-09-20T05:56:00.003+08:00

It's been a while since I posted about Raiyan's progress with the therapy. Alhamdulillah, Kerri, Jo and Tracy have all said that he is doing very well with the programme. In fact, what is more important for him to focus on more these days is (surprise surprise) his social skills and his behaviour in class so we are now even considering reducing the ABA hours and instead adding on more hours for him to be supported in class.

With Raiyan’s basic language in place, his ABA programme has been geared into more logical thinking exercises that are compelling him to think more for answers rather than just being rotely told what to say. And from what I observed with his session with Jo yesterday, he is coming up with the most adorable answers ever!

Unfortunately, I have to admit that I have been slightly out of date with his ABA programme lately but now that I will be staying put in Brunei for at least 7 weeks before my next trip, I’m really hoping to get back into gear and start generalising his programme more (plus we are also newly energised with Raiyan’s new therapy room in our new home).

Things that Raiyan was doing with Jo yesterday:

1) Odd one out: Raiyan lays out five different objects that belong to a same family (like animals, fruits, transportations) and he asks Jo a question which would single out one item out of the 5 and then 4 etc until all are eliminated. So for example, in a family of animals, he asked “which one has a snout?” or “which one has a mane on its neck?” and Jo would (easily :D) guess which one he is speaking of. And remember this is ALL voluntary language on Raiyan’s part and not rotely taught at all!

2) Pragmatics cards: More hypothetical situations are set up for Raiyan in these cards and Raiyan is expected to answer what he would do in such a situation. Though some answers (especially in situations where he may not be familiar with) are given through the cards but one such as “What makes you angry?”, he answered himself with “When Alisha scribble my drawings”.. so cute! (But poor Alisha.. Jo said she’s blamed for a lot of things that upsets Raiyan..!)

3) Describing things: Raiyan will be given an object that he needs to describe with 2 or more descriptions. This is really good in encouraging his natural language to come out and also will help familiarise him with everyday situations when he needs to describe things to others to get others to understand what he means.

4) I/you/my/you/his/her: I HAVE NO IDEA HOW JO AND TRACY MANAGED TO GET THIS THROUGH INTO RAIYAN but they did! Raiyan always gets his pronouns mixed up so a good way for him to familiarise this is by doing things such as making him touch Jo’s nose and ask him what is he doing (“I am touching your nose”) or making him ask us what we are doing when we are holding Alisha’s hand (“You are holding her hand”) etc etc. He will almost always get it right IF he concentrates but at least we know he is capable of doing so :D

Raiyan is also doing better in class. His reading is very good and he is up to 4B stage now which we are told by his teacher to be the highest stage for his year now :D. He is also acceptable to do more writing and is actually doing more on his own at home (his current favourite now is writing birthday cards for his best friend Adek).

Of course his behaviour, especially in terms of his “loudness” still needs to be worked on. At the moment, Raiyan actually has a slight sore throat and is losing his voice a bit so hopefully from here, we will try and train him to get used to talking in a lower voice.

Alhamdulillah again for all the progress. Til next time!

Look what I unwrapped this morning!

2008-09-11T21:07:00.003+08:00

Feeling all blue and dreadful for the start of my intense full 4 days meeting (starting from today), I was completely uplifted this morning by this award given by a fellow mommy blogger, Viviana from Malaysia which completely cheered me up! Thank you Viviana for both the award and your kind words.. :D

I got the rules of the award from Viviana's blog:
Rules of the award:
1. The winner may put the logo on her blog;
2.Put a link to the person you got the award from;
3. Nominate 5 blogs;
4. Put links to the blogs;
5. Leave a message for your nominees.

The blogs I nominate are:
1. Julie and Daniel- Delightful stories of a gorgeous boy with autism and his amazing mommy, which includes homeschooling, visits, tips and many many things other mommies can aspire to!
2. Nisa and Hafidz- My beautiful cousins Nisa and hubby Hafidz who writes about their life together in UK and who never fails to remind me of how sweet and precious true love is that I constantly look forward to read about theirs every day!
3. Pieces of Me-this super lady just may be the funniest person I read on the blogsphere.. this ultra fit babe has a non-nonsense attitude to life that all of us can learn from. I know I have!

I know I have 2 more blogs to link and I shall do that later after further consideration as I have to get back to my reading for my meetings now!

Happy reading to all and thanks again Viviana!

New Year,New Buddies

2008-09-06T07:30:00.004+08:00

Learning Ladders Society has been running this joint programme with ISB since last year where we have the IB (6th form equivalent) students as part of their community service programme, take care of our kids for about an hour at the adventure playground at the school. The students that were in the programme last year, many of them were STARS of our Learning Ladders Society Launching Video =), are now in upper IB which means they have to start concentrating more time on their studies. Which means that the lower IB students have to take over this year.

So yesterday was the handing out/takeover session from the old to the new. And what a great turnout it was! :D. A bunch of new parents also came over and it is always nice to meet new faces and share new stories. It was also nice to be reunited with all the other usuals after not seeing each other during the summer breaks!

To the new parents, I can anticipate that you may be initially wondering what are the benefits of this programme. And let me assure you, the improvements I see are not just with Raiyan but also with other kids:- their confidence really soars.. Not only their confidence to try new gross motor skills such as climbing, hanging, running, rolling, catching ball but it's their improved social confidence that has amazed us parents. From initially being either terrified or completely oblivious to the existence of these "buddies" (what we call the IB students) and to the other children, after a while, these kids actually start to ask for their buddies by name, are obviously happy when they see the buddies and all the other kids and generally look so excited and thrilled everytime they arrive to the playground.

I also see the increased confidence in the mommies and daddies who bring their kids because from initially being worried about every little step their child takes, they are now chatting away with each other without a care in the world about their child for just that one hour. From all the daily stresses we parents get in taking care of our child, don't you crave for that one assured hour when you don't have to worry about your child AND know that they are enjoying themselves at the same time?

Plus this programme is absolutely FREE so long as you are a member of the Society.

Another great thing about the programme is how much we have spread positive awareness of autism to the buddies themselves. From not knowing what on earth autism is, these teenagers now can actually converse and communicate with our kids AND I'm sure it must be so fulfilling for them to be able to do so considering how hopeless the situation must have been when they first started! And they can spread the positive awareness to others and so on and so on.. Even they are amazed to see the improvements in these kids:D

As you can see, there are many many advantages to this joint programme so we would like to invite more and more parents to come! Just contact Learning Ladders Society for further info ok!

Great Motor Skills Raiyan!

Oh and siblings are welcomed to join along too!

Post Demolished Zoo

2008-09-06T07:18:00.004+08:00

Ermm, just ignore that Academy Awards Book!

This is Raiyan's much improved zoo which he created from scratch after I demolished the one before it (read the previous post as to why I had to do that).

The good thing is after having to do it again, Raiyan grabbed the opportnity to be even more creative! Now his zoo has a hill with a lion's den at the side, an amphitheatre at the side to watch the penguins and the dolphins (and notice that the penguins are on polar-like white legos and the dolphins are on ocean-like blue legos) and lastly, the zoo also has a tree with a monkey and bananas on it! Apart from a little help from me to make the lion's den (hey I had to do something after I demolished it!), Raiyan did ALL the rest on his own. I am so proud and happy with how far he has come with his imagination play. But I am more happy of the fact that he doesn't throw a freak out fit if others demolish his things let alone touch them! AND he can easily proceed and make a new one! Amin!

A Tidal Wave Amidst the Peace

2008-09-05T23:10:00.005+08:00

WARNING: FRUSTRATED MAMA RANT AHEAD.

Today has been a pretty low day for me.

Just to update, Raiyan has been having a few “social” problems whilst adapting and settling into Year 1, so much so that we had to shift him to another class so that he can be together with Fadhil which means that Jo (who also shadows Fadhil) can eye them together instead of separately if they are in different classes.

Things seem to be going well this week. Every day when I pick Raiyan up from school, the teacher kept reassuring me that everything was okay and he was doing relatively well. I do know however that Raiyan still has problems with his loud voice, in particular when he shouts out in class, either to get attention or worse, when he’s frustrated about something. Nevertheless, every day of the week I was reassured that everything was ok, so I was grateful, relieved and was beginning to feel confident again about his future in the school after a rather tumultuous start to the year.

But today, I suddenly get news about Raiyan’s teacher receiving “complaints” from other parents about Raiyan’s shoutings. I don't want to go into detail about what I heard for I don't want to put anyone in a difficult position, but simply put, a lot of troubling thoughts and questions were running through my head the whole day. Venting to my fellow Learning Ladders Ladies was helpful but unfortunately was not helpful enough. To say I was enraged is an understatement.

I accept Raiyan to be autistic but in this country where there is a 99% level of ZERO understanding of what autism is, sometimes and especially lately with him having improved so much, the label of autism has only proven to be a nuisance for Raiyan for it has at times led others to have the worst but unnecessary preconceived notions about him. Some people really have absolutely no idea that autism is a spectrum and that not all autistic individuals are alike. Some people are completely ignorant of the fact that autism is treatable. Some people either dont’ know or just forget that Raiyan IS able to read, IS able to write, IS able to mildly socialise with others, IS able to communicate a lot of things, IS able to be calmed down when he is upset, IS able to be told what to do and IS able to try new things. But what happens instead is the MINUTE he does ANYTHING remotely different, people think of the autism and SHUTS THEIR MIND AND ACT HELPLESS.

It would be so easy for me to just throw in the towel because we have seriously been working so hard on Raiyan’s social skills lately. There is not a day when we are not reminding him about not interrupting others when they talk, about the need to learn sharing with others, about the need to keep his voice low (this has been going on for months! If there is some surgery where I can permanently lower the volume of his voice, I would take it but what can we do? He is BORN with those vocal chords!), about the need to wait for his turn and about the need to raise his hand if he wants to say something. And along the way, I’ve been doing it with a heavy heart because I can’t help feeling like he is being overloaded with all these new rules every single day ON TOP of his school work and his therapy. And what still happens? A shout or two still led to make us feel that Raiyan is not good enough to be in the class, despite him improving in everything else. Who wouldn’t feel frustrated? I mean I know I said I wanted to deal with Raiyan's autism journey "peacefully" and I really try to not ignite touchy debates through my posts, but I really feel the need to voice out the reality of what we autism parents have to face when it comes to our attempts in wanting to educate our children in Brunei. Let me break the news, handling others' prejudices and narrow mindedness makes up such a big chunk of it all. With the law providing for inclusive education, ALL schools are obligated to accept special needs students. Hence, by right, us autism parents should never be made to feel like our children are not good enough or do not belong in this or that school. But the sad fact is that either our children are made to feel that way OR they just end up being neglected simply because others do not know how to handle them.

This is why I am NOT going to give up. Because to give up would mean taking him out of school and letting him stay home and therefore denying him a possible independent future. And to give up would mean further instilling the current typecast Brunei has on autism when I know for a fact from reading so many stories of improvement and even recovery that there is so much more hope for these children than the extent of what those in Brunei thinks.

I accept this challenge wholeheartedly and tonight I went a step higher in trying to get through to Raiyan about handling his frustrations better by way of modelling instead of just telling him. When I tried to explain that it is not good to take things away from Alisha, I purposely demolished his lego zoo to which of course he got incredibly distressed. I immediately took that opportunity to tell him that how he is feeling there and then is how others feel when he takes something away from them or when he doesn’t want to share things with them. And lo and behold, he immediately stopped crying and really looked like he understood what I was saying and vowed to try and not do those things again. Of course I expect to reinforce this more later on but this occasion really did feel like a breakthrough compared to previous times.

So what happened today is probably a stronger kick in the butt for me to work even harder with Raiyan and to remind me that this journey is NEVER going to be easy. Then it occurred to me that life is NEVER going to be easy anyway, so I am just preparing my child to cope and handle this ugly world as early on as I can. AND after today’s incident, I am sorry to say that after witnessing such intolerance by others towards anything slightly different together with constantly seeing what seems to be people’s increasing needs to strive for superficial perfection, the world’s just going to get uglier.

But the beauty with Raiyan and all autistic individuals is that they are completely oblivious to all these superficial crap. It's just me that has to learn to not let all this crap affect me so much :-P

Never Stop Playing!

2008-09-02T13:08:00.008+08:00

Here are some pics of imagination play Raiyan got up to recently.

This is something he saw in that children's show Hi-5. Upon seeing these hoola hoops he insisted on copying what Nathan did with it in the show-which is to make it look like a bicycle. He did get a little help from babah on this:

Raiyan still really loves to play with these wooden blocks expecially making houses of them:

This is Alisha's baby Emma having a picnic under a tent, courtesy of Raiyan also (oh and thanks to Alisha too for lending her toys!)

And of course the ultimate favourite is anything to do with animals and this is something Raiyan created just last night, which I can only assume to modeled on what he saw in Singapore Zoo:

Notice the penguins on the side (from the rest of the animals), some of the animals in their cages and two lil people (who he says to be him and Alisha) on the tram going round the zoo! How cute!

Practising Writing

2008-08-23T16:40:00.004+08:00

Raiyan really does not like to write. Ironically he already knew how to write when he was 2 and a half years old at his old school. But I have a feeling that he kinda overdosed on it after having to do writing homeworks at every weekends (!!)

But when he went to ISB and into Reception (Kindy II), we were surprised to discover that the students were not taught writing skills at that stage yet but only just learning to hold the pencil properly. The trouble with Raiyan was he was already accustomed to holding the pencil and to be writing a certain way which unfortunately happened to be the less than correct way to do it.

So the overhaul had to be done by Kerri and Jo in trying to re-teach Raiyan to write that together with the earlier assumed overdose from his old school, has caused him to just dread doing it.

Now that he is in Year 1, as I have said before there is going to be much more writing than last year, (in fact a huge leap from before) so it is our job to constantly get him to practise and practise in writing. As Jo said, just seeing him holding a pencil is good enough!

So I managed to fit in some writing time with Raiyan just now during my lunch break, and Alhamdulillah, he was very receptive (well especially since we were talking about animals! But hey it’s a start)...

Instead of just copying, I made him TRY to write things that we were saying together. He would still often ask what letter comes next but instead of telling him straight I would first ask him what he thinks from the phonetic sound the word makes.

I of course praised him endlessly when he finished writing his whole sentence and he actually looked so proud of himself when he saw the final product and when I took a picture of it. I hope that will encourage more future writings! Amin!

P.S:-The title on top was written by me in order to entice him to come over to the table and start writing in the first place! Oh and of course we had to place the animal figurines at the side just for extra happiness points!:D

School Schmooool

2008-08-22T17:17:00.003+08:00

“School”..

Sigh, I don’t know about you but my memories of my school years are not exactly something I like to ponder over so much. And I’m talking about the time right from primary school through to secondary school (that period awkwardly thrown in with all the teenage angst as well) down to my university years. I can’t pinpoint the reason of my unpleasant stance against the education system that I went through onto one thing but I think more than anything else, it was because earlier on, things taught to me were basically spoon fed or forced upon that when I reached university I was completely lost. It took quite a large part of my adult life so far to start thinking things for myself and believe me, I am still learning to do that as we speak.

But before I thought I can bid adieu to that experience and the system completely, cheng cheng cheng--I have to go through it all over again with Raiyan but only now I anticipate it to be doubly hard because of the way Raiyan is! You know how difficult it is to tell an autistic child what to do!

So Raiyan finally started Year 1 this week. Luckily, Kerri planned for an “easing in” programme that started 3 days before school actually started so we can slowly and gradually introduce Raiyan (and the other LL boys who also go to ISB) to his new class and new environment altogether. It was a real blessing for us to have done that for Adek because on the first day of easing in, Adek had a tantrum for at least half an hour. Of course Sharina and the rest of us employed the “ABA ignoring” method and Alhamdulillah Adek was okay in no time and was happily playing away with Raiyan and Fadhil at the playground. [And reports have it that he has been fantastic in school this week too, Alhamdulillah].

Come Wednesday (the first day of school), we were all understandably anxious to see how Raiyan will be like. We tried to give some tips to the teacher but at the same time was scared that it might actually overwhelm her if we gave too much.

So far so good, except for some social hiccups along the way that we really need to work on with him.

In particular, Raiyan (being his egocentric self again) likes to call out to the teacher out loud during times when he’s not supposed to. This is naturally disruptive for the rest of the class so it’s really important for us to work on this with him constantly. Actually, Jeff and I would LOVE to work on this as even at home he is forever calling out from across the room when Jeff and I are busy talking or busy doing anything really, and he would call out repeatedly until his wants are met.

Another social skill he has to learn about is the fact that he is not going to get what he wants all the time. We have to explain that other people can say NO and in fact in life, people would say NO more than yes (and sadly, I think everyone can confirm this is more so when you are a child).

We also have to remember that there is going to be more academic stuff in the year 1 curriculum like more maths and writing so I have to make more effort to do that together with him at home too. On a good note, we will insyaAllah be officially moving in our new house by next Friday so hopefully Raiyan’s home school/therapy room will be ready by next week which will make it easier for us to do school work in. But in terms of him doing it in class, Jo who supports him in class half the time is confident that Raiyan will be able to manage, but of course with the right support.

Well, it has only been 3 days and already we know what we have to work on more (and they are a lot!), and especially those in the social skills side. I keep reminding myself to not get disheartened by it all because hey, school was never great for me too so there’s nothing new about this now is it? I just hope I can make the experience a million times better for Raiyan than it was for me by giving him the right support and to make the school experience fun, which is something I am surprised to learn is a luxury some lucky people actually got!

Week 31 Progress

2008-08-16T17:28:00.004+08:00

Raiyan's therapy programme has been more challenging lately but that's not to say that they haven't been in the past and alhamdulillah, with every challenge that has been put before him, Raiyan has managed to handle and overcome each of them amazingly well. His natural language now is coming along great and he is able to freely communicate how he feels in words that he is familiar with instead of just responding to questions in a way that was rotely taught to him in the past.

Below are some progress stories and also some of what we are concentrating on his programme at the moment:

1) Cause & Effect: Raiyan would be told a situation and then he has to tell us what he thinks will happen next. The difference now from previous occasions is that he is answering the effect part all by himself. Examples would be like "If someone tells you a joke, then?" Raiyan responded "then you laugh!". Another example "If the flowers are droopy, then?" Raiyan responded "you need to water the flowers!"

2) He can arrange a sequence of 8 pictures now and these are pictures of more complex situations than before. Example, there was a sequence of pictures where a mother was sending her son to school but they left his school bag at home and then the mother had to go back and get it. And not only did Raiyan know how to arrange the sequence, he was able to describe them too!

3) He's describing more complex verbs such as "he's hanging a picture" but even for those he doesn't know, he would always say "I don't know" OR "what do you mean?" OR "what do you think it is?" (So cute!). Jo however would still insist that he gives it a try and he's beginning to be more confident in saying out loud what he thinks it is.

4)He's starting to grasp with how to play hide and seek as he is able to close his eyes and count to ten now. But, he still has to work on finding the person hiding as he still easily gives up- which leaves me and Alisha to hide endlessly in a corner of the room waiting to be found!

Outside the therapy session, I think everyone can see how much of Raiyan's natural language has improved. We are also more confident in telling him things thinking he understands them. In fact, we find that if he doesn't understand something, he will keep quiet but when he does, he will always say "okay!" (and this is even when he's not even looking at you).

He's also becoming more attached to both Alisha and Addin that sometimes he would look for them when they're out. The other day we dropped him off at grandma's house and was about to bring Alisha to the clinic and he was so worried that Alisha didn't get down from the car that he kept telling us "I miss Alisha!" :D

Alhamdulillah for everything! Til the next time!

Voila!

2008-08-15T01:26:00.005+08:00

Or in Raiyan's words- Tee-La!

After much deliberations and undergoing many trial and errors, I think I have finally decided on this new layout. Raiyan's fave colour is green so the nuances of green within it is perfect. I couldn't let go of this artwork by celso junior cause it just has such a special sentimental hold on me. And lastly, I love how there are so many sections for me to put in al the side things!

It's still far from complete though. I would go on but it is already 1:30 in the morning and I have to get up in 5 hours time to go to the gym! Hah

Whoooppsss!

2008-08-14T07:21:00.001+08:00

Sorry, I've kind of messed up the blog whilst trying to change the layout and am going through some technical problem now in trying to fix it. Hopefully it will all be resolved by the weekend and Raiyan's blog will look brand new insyaAllah!

Feeding the Kangaroos!

2008-08-11T22:16:00.002+08:00

After some initial apprehension (naturally! especially since Raiyan is normally sensitive to new things and new touches), we were so proud to see Raiyan bravely feed the kangaroos out of his own hands! Of course, he kept squealing loudly out of nervousness mixed with excitement but in the end you can tell he was soo pleased with himself for having done what he did.

What was so cute was when he kept saying "Haha the kangaroo tickles the hand! haha!"

Well done Raiyan!!

Random updates...

2008-08-11T21:42:00.005+08:00

A lot has happened since I last posted. The biggest thing was our family minus Addin going on a 6 day holiday to Singapore. Somehow the planning stages already felt different and better for Jeff and I. For the first time we weren't so worried about bringing an abundance of things with us in case at any point Raiyan may insist on having something, anything- remember items of the week? The thought of introducing Raiyan to new things was also not as intimidating. The idea of changing plans at the last minute was also not as daunting as before. Instead, we really just wanted to focus on having a good time.

And indeed, syukur alhamdulillah, Raiyan had a blast and not a single tantrum surfaced throughout the 6 days! In our very tight schedule we managed to go to Singapore Zoo, Night Safari, Botanical Gardens and the Museum (not that that was his interest!). Even when we were at shops, we always managed to give him (and Alisha) a break by letting them run wild at the toy store or the indoor playgrounds many of the shopping malls thankfully have in place. The best part was he was always communicating his feelings and wants properly and appropriately instead of just screaming for what he wants like what he used to do. If he was feeling tired from all the walking, he would tell his babah "Babah, I am tired". And he would always ask us "where are we going?" when we haven't told him yet. And of course he did not stop yapping away at the zoo!!! But funnily, when we ask him if he wants to go to the zoo again, he said "Nooo! We went already... that's too much zoo!"

Raiyan is also much much more social now and he will always approach other children and try to start playing with them. At one of the playgrounds, he was definitely playing together with another girl for almost half an hour! And only after that long did Jeff spill the beans about his condition to the girl's father and he said he really had no idea!

Another big thing happening since my last post was Raiyan's 5 year old check up at the clinic. Luckily he was able to understand our early warnings about the injection so we didn't endure a complete nightmare when he was getting the jab. The great part was that the nurse whilst checking his development thought that he is completely ok but probably just a little shy!

Now the meeting with the doctor was a different story... see, there was this bunch of letter blocks on the doctor's table so unsurprisingly, he was verrrryyyy distracted and engrossed in looking through all the letters on the blocks that he failed to really listen to what the doctor was saying to him. Nonetheless, the doctor said overall, he does seem fine but he DID think Raiyan may be mildly autistic because of the part where Raiyan was ignoring him. (I guess our medical authorities really only start paying attention to a child's development at 5 huh?) Soon before we resorted to being slightly disappointed with the fact that Raiyan didn't talk much with the doctor (stupid blocks!) out of nowhere he just said "Babah! The "C" is missing because I can't spell cat!"
Meaning (which we hope the doctor noticed) he was distracted with the blocks because he wanted to make sure that ALL the alphabet were there!! Some things never change huh!!!

School's starting in 9 days time and Raiyan is going to be in year 1! Will keep everyone updated about that then but in the meantime, we are enjoying the rest of Raiyan's holiday! So sorry I'm not able to blog much this month!

Making Peace with Autism

2008-07-24T10:39:00.006+08:00

I have decided to change the title of this blog from "A Personal Journey with Autism in Brunei" to "A Peaceful Journey with Autism".

This really derived from an epiphany I have been having lately through dealing with Raiyan's autism. I have been slowly moving away from being that parent who is incessantly endeavouring to improve and better my child, along with always trying to ante the therapy as much and as often as I could, without having taken a moment's break to see who my child is and to see the world from his point of view.

My objective when I started the blog was to mainly chart Raiyan's progress with his new therapy programme and to share it with others, especially in Brunei where autism is still very much hidden and misunderstood. And since I was opening ourselves up for the world, of course it felt personal and it was apt to call the blog "a personal journey with autism in Brunei."

But I have been so absorbed with seeing progress, expecting certain responses and behaviours, (with the somewhat careless notion and confidence that he, as a mere 5 year old will be able to handle it), that at the same time I have neglected to actually get to know the real Raiyan. And that means understanding the reasons behind those times when he blankly refuses to talk to me who is constantly insisting he responds to everything I say. That's when I realised that it makes sense for me to want to ignore someone asking me uninterrupted questions on something I have no interest in right? This is what my gut feeling is telling me now as to why Raiyan may be behaving this way lately. He might be more aware of his personality that now he has more confidence to decide when he should respond and when he shouldn't.

The other day Jo told me that even though his therapy sessions are going brilliantly, she suspects he may not respond as well outside of the sessions because the therapy already takes up so much of his energy and concentration. So much so that he still needs to resort to his own world once in a while. A few months ago, this would have been unheard of for me because we thought to allow him to retreat back will mean regression, and the stoppage of making further headway.

But lately he has been resilient in going back to his old ways, albeit still controllable and in much smaller quantities. Compared to how he was in the last months, he's been throwing himself on the sofa more, he's been shouting more, he's been demanding body contact when sleeping more, he's been ignoring others more, he's been self-talking more AND he's beginning to rekindle his previous obsession with animals (to be fair on him, this may be because he knows we're taking him to Singapore Zoo next week).

But the surprising thing is, despite what may seem to us paranoid parents as regression, he is still successfully completing his ABA programmes at the right pace and when following the programme strictly, he CAN continously talk throughout the 2 hour session.

Which have now led me to think that I should start to relax a bit more and be less controlling over the outcomes of his therapy and let nature takes it course. I've realised that it has been a farce for me to think that his therapy has "changed" him to be a different boy and that the future will "definitely" be much brighter from now. I do not deny that the therapy has worked immensely well but I have been so naive to think that we've crossed the biggest hurdle. We may have when it comes to his communication skills with those close to him, but there is long road ahead in so many other aspects of his life.

But rather than confront these challenges in an aggressive way as I may have done so lately, I am now choosing to handle things in a more "peaceful" and more importantly, in a less stressful way that is free from disturbing thoughts or emotions. Instead of getting either perturbed or in denial about the "lows" (like for eg yesterday a boy from his old class who happens to also be a neighbour avoided him and told Jeff that he doesn't like Raiyan- luckily Raiyan didn't realise but Jeff and I couldn't help getting saddened by it), I shall just embrace it and accept that all of this is part of the bigger picture and overall, they are a part of LIFE that no one but Allah has any control over. There is absolutely no point in getting angry or being militant in getting results when in the end, you know that things don't always go as you plan. We just have to keep the faith that no matter what happens, insyaAllah it will always work out in the end.

PS. The title of this post comes from the book by Susan Senator that I am reading (and of course influenced by) at the moment. And funnily enough, the new title of the blog I actually got from Mom to Max who somehow linked me as this new title even though at the time it was wrong! So it's thanks to her really!