Chubby!

video

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?

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

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

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....

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

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?

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

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?

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

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

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

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)

*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

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!

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

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

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

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

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

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

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 na├»ve 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?

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

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

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

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

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

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

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!

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?

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!

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

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

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!
PURPOSE:Hoping for more understanding and less judgment from all.

 To show the importances of early intervention and an evidence based treatment to help reach the full potential of the child.

 Offering other parents hope to have faith in the positive progress of their child.

Amin.
 
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