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.
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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