Golden Points

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

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

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

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

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

Non Compliance

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

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

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

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

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

Give us a clue

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

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

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

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

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

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

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

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

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

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

$Money Money Money$

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

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

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

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

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

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

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

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

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

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

Dinner Table Battles

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

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

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

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

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

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

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!

A Tidal Wave Amidst the Peace

WARNING: FRUSTRATED MAMA RANT AHEAD.

Today has been a pretty low day for me.

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

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

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

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

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

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

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

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

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

Practising Writing

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

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

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

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

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

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

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

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

If you meet Raiyan

For anyone who meets Raiyan, and especially if you are just a reader and have never personally met him, let me try and help give some tips on how to communicate with him if you happen to meet the pweshes cutie:

DOS

1. You can try and say Hi Raiyan first but if he doesn't say hi back, go up to him, squat down, get down to his level and try and get his attention first and say it again. You don't have to be loud (he's not deaf) and you don't have to speak slowly (he would know what Hi Raiyan means hehe);
2. Introduce yourself by saying "My name is ____ "
3. You can ask simple social questions like "how old are you?", "where do you go to school?"
4. You can ask simple questions such as "what are you holding?" (and with Raiyan's track record, he's always seen holding something!). When you want to pursue more questions, keep it simple with only WHAT, WHO, WHERE and maybe WHY questions to do with that item. And do ask one question at a time. It takes him a while to process just one question let alone a series of them. Be prepared for him to not answer straight away. If after 8-10 seconds he still doesn't answer, you can try and ask the same question again.
5. If he answers in a fast mumble, you can try and say that you don't understand and ask if he can say it again slowly. More often than not, he would repeat what he said but in a cheeky "know it all" tone and saying each word a tad too slowly and clearly!
6. If you definitely want him to talk to you, be prepared to get into a conversation about animals-so you can ask him about his visits to the zoo, what animals live in the sea, what animals live in Africa etc
7. Do prepare for Raiyan to go off on a completely different tangent whilst talking about something-this may be because he has seen something else that caught his interest. You know it's really difficult to sustain his attention for too long right?
8. On that note, be prepared for Raiyan to just suddenly run off to the other end of the room as well. He usually does come back!
9. If Raiyan gets too loud, you can do the sshh gesture and tell him "not so loud Raiyan"
10. Be open minded and don't get caught up thinking too much of the "disability" or the "difference". Just remember that Raiyan is still a healthy, energetic and lovable young boy whose only shortcoming is not being able to communicate to others the "normal" way. That still doesn't mean that he doesn't understand what is happening around him and it certainly doesn't mean that he doesn't understand everything you are saying.

DON'TS

1. Please don't get offended when he doesn't look at you when you are speaking to him. Even though you may think he's not hearing or listening to you speaking when he's looking somewhere else, have the initial confidence that he is hearing/listening nevertheless and wait patiently for a response.
2. On that note, please do not talk about him to me or anyone else in front of him about things we shouldn't be discussing thinking he doesn't understand-more often than not and we may actually never know to what extent, he actually understands what we are saying and it's just naturally not a nice thing to do.
3. Don't get offended and judgmental when you find out he doesn't speak in Malay. We are working on him to talk in any language and for now it has to be just English since his therapists teach him in that language;
4. When talking to him, don't ask too many questions at one time. He will get too confused as to which question he is supposed to answer. Remember how much effort it takes for an autistic child to speak by computing all the words involved in this brain. So just imagine him trying to process just one question and then having to compose his response lagi!
5. Don't talk to him in too long sentences and keep it in the positive. Try to avoid sentences like "do you not want to eat Raiyan" OR "don't you think this should go there Raiyan?". Instead, it should be "do you want to eat?" OR "where do you think this should go?"
6. Don't be nervous and think that you won't be able to handle him at all. You can always try first with how you would talk to a typical child and you may be pleasantly surprised with how Raiyan may respond!
7. You know how sometimes we want a kid to do something cute over and over again-don't expect for that to come easy with Raiyan. Depending on his mood, we can never get a guaranteed response from Raiyan everytime-however cute he is when he says "CORR BLIMEY!"

And just laugh and have fun! Raiyan is such a happy, cheeky boy who loves people (contrary to myths about autistic children-he just finds it more difficult to connect to other people but that doesn't mean he doesn't like them) and especially loves to be the centre of attention! He is such a pure and absolutely lovely boy and I challenge anyone who says otherwise!

ABA Checklist Continued

To expand on my previous post, Linda has very effectively summarised Learning Ladders' understanding and experience on the ABA programme and I very much encourage any interested parents to read this post to get an advanced in-depth knowledge of what it is exactly we do in Learning Ladders in terms of providing therapy and assistance to our children.

Week 21 Progress

Alhamdulillah, Raiyan can't seem to shut up these days. I never dreamt and envisioned how this can happen so soon but our family is eternally grateful that he's actually reached this point now. Sure, sometimes he talks and talks with no inkling of whether or not his audience is attuned to what he's saying, but for us, just hearing actual, comprehensible words coming out of mouth and for him to initiate conversations with others is just heavenly. (Attunement can come later...:D)

Raiyan had his half term break away from school the whole of last week, which meant that he needed extra attention from us at home, in what I can only perceive to be him trying to compensate what he's obviously missing from school. Hence, the endless questions and requests ensues throughout.. If it's not him wanting to draw together, it's him wanting to make rainbows with the play-doh, or him wanting to "sikut"(said with an English accent of course) and chase Alisha and many others, incessantly asked until we adults have to put down whatever we are doing and indulge him with his many wants. He really doesn't take no for an answer! (Note: Yes, we recognise the need to work more on this.. but it's sooo hard! With him talking, he's a hundred times more adorable and it's sooo easy to just give in!!)

Anyway, his progress lately:

1. Kerri says that he's just a whisker away from being able to answer "how" questions. Her only advice is for us parents to try and generalise it more. In particular, we have to make sure that he doesn't answer with "because", which is actually how he starts off answering any question these days! As I mentioned in the previous progress post, Raiyan can describe how to blow a balloon, and blow bubbles etc. I admit to be lacking in the creativity department lately in trying to think of other situations I can ask Raiyan to describe and so I've been relying too much on the flashcards. Since Raiyan already has gone through the flashcards millions of time (since he's getting 17 hours a week now), he very very reluctantly and very quickly answers my how questions and immediately after shouts "No, I DON'T!"
2. His receptive understanding of the Malay language is getting a lot better. The other day in the car, Alisha was crying out for her Barney DVD to be played so I said "Mana ada TV dalam kereta Lish" and then Raiyan continued for me "Only music Alisha". And yesterday, my mum told how she and Ida and Nor were talking amongst themselves saying "mana tia animals nya ani" and Raiyan all the way on the other side of the room yelled "the animals are here!" hahaha.. see not only can't we underestimate his receptive understanding these days, but the same thing also goes for his amazing hearing!
3. His therapy programme is still working on the tenses mainly. He can uniformly answer this sequence of questions now: (when asked to clap his hands) i. before clapping you ask "what are you going to do?" R: "I'm going to clap my hands". ii. when clapping you ask "what are you doing?" R:"I am clapping my hands" and iii. after he claps you ask "what did you do?"R: I clapped my hands."We have to continue generalising this in other situations (see more on the past tense below) and also we need to work more on the past tense of irregular verbs such as "blew", "ate", "hung" and "drank."
4. On past tenses, I am slowly seeing him being able to tell me about what he did earlier that day. One of my dreams is for Raiyan to tell me about what he did in school. And because we've started him on past tense, I think he's slowly getting it. Yesterday I asked him and he said "train book. go to north pole. party. polar bear." then he steered off in his normal ways as to where a polar bear lives etc etc.. sigh... (the first part was correct though because I DO know they are reading a book about a train in class);
5. On that note, another thing we are working with is trying to make him stick to ONE conversation. Raiyan loves to go off on a tangent when talking to others and a lot of times, answers our questions probably 3 of them at most and then starts talking away about something else (more than often, it would be about animals!). So everyone talking to Raiyan has to make sure that he's following the conversation through to the end. This will hopefully help him being able to have typical conversations with others.
6. Babah bought a "counting animals" book and Auntie Wen Wen bought him playdoh for his birthday (which was on Monday btw-my big baby is 5 years old!) and naturally he insisted to bring it everywhere yesterday (Tuesday). Kerri said to just let him because he's just likely to want to show others (just like typical kids) as opposed to the items being the flavour of the week. And true enough, this morning I told him he can't bring the stuff to school again and he said "okay".

Some speech improvement stories:

- Nenek girl wanted Alisha to salam her good bye and Alisha was being cranky and refused to do so. Then Raiyan nyampuk "Nenek, Alisha says no. She don't want to salam. Alisha's too BUSY (again, imagine real posh brit accent)" Thankfully my mother in law saw the humour in it and laughed. Raiyan apa lagi, iski lah and kept on saying it again and again, and again.. hehe

-Whenever I'm about to go to the gym, I ask him "why does mama go to the gym" he would say "to exercise!"

-My parents' old television is acting up these days so sometimes it just switches off by itself. Whenever that happens, instead of getting frustrated, Raiyan just says "Oh, TV is tired. give ten minutes to rest!"

As I mentioned, Raiyan has gone up to 17 hours a week (he started with 11) so insyaAllah, this will help drill in the learning materials quicker and easier.. Amin!

Till next week!

The Final Countdown

With Raiyan progressing so well with his therapy, especially in terms of his speech, sometimes I make the mistake of expecting simple daily tasks like eating, showering, changing clothes would be easy too. I mean if he is starting to already learn logical thinking, complex emotions and hand gestures, then surely I can expect him to easily take a bath and eat his meal when he's supposed to.

But sadly, this is still not as straightforward as I expect it to be. Every single mealtime or bathtime is still a power struggle, every single day. And this is when I have to remind myself that he is still very sensitive to change and will probably always be. And I have to accept that like with the tactics used to improve his speech, I have to make the constant effort of getting creative in the behavioural techniques of trying to coax him to eat his lunch and take his bath. No, merely asking him if he's hungry or telling him that he's dirty makes no difference at all.

The most valuable tip I can share to grapple with these acts of defiance is to give the child a countdown (of course providing he understands) until he needs to stop doing what he’s doing and shift to another activity.

Learning Ladders are still in the process of getting egg timers (those shaped like an egg with big numbers on them, which unfortunately you aren’t able to get in Brunei) to make it visibly easier for our children to see how much time they have left, seeing how almost ALL of us parents use the countdown tactic to change activities.

So in the meantime, without the egg timer, Raiyan has to completely trust me in counting down the minutes and he will make sure I count down in the right sequence. Hence, if the last minute I uttered was “9 minutes Raiyan”, the next one MUST be “eight minutes” even though 3 minutes have passed because I was too lalai to check the clock! Raiyan’s gotten so good with his sense of time that sometimes I would try and cheat and let only 30 seconds pass by and then say “7 minutes Raiyan” to which he’d say “no, 8 minutes!”

But Alhamdulillah, the countdown tactic has worked WONDERS with Raiyan. Before, if we were to simply just yank him from what he’s doing to bathe him, he’d be screaming in protest the WHOLE time he’s in the bath. But now, we give him the countdown and after every update of “4 more minutes or 3 more minutes Raiyan”, he will ALWAYS obediently say “Okay.” At the same time, he also realizes he doesn’t have much more time to do what he’s doing at that moment, so he really cherishes those last minutes and concentrate with all his heart with what he is doing.

Countdowns are also good with 2 way bargainings, like when Jeff and I want to watch TV too, we’d say “Raiyan, Playhouse Disney 5 minutes, then American Idol 15 minutes ok?”. Raiyan would cheekily say “No, Playhouse Disney 15 minutes, American Idol 5 minutes!”

Best of luck to all parents who wish to try!

Week 19 Progress

Even though Raiyan's been having the chicken pox for the past week, he was still coping really well with his therapy sessions. (Yes, Kerri and Jo are really that great).

The last 2 weeks Raiyan has been learning to master almost the same programmes week after week, only because it is a relatively difficult programme to get a grasp on but nevertheless, he is definitely showing positive progress. At the very least, he seems to be able to know what is expected of him, it's just that he needs to take a moment and carefully think first for what he needs to say.

The kind of things he's working through now:

1) How questions?: so far, he's good with describing how to blow a balloon, how to blow bubbles and how to open a door. Kerri said that it seems easier for him to do this when it's a particular action being done as opposed to just seeing a picture of a boy blowing a balloon. This obviously means that this is something I would have to try and generalise a lot daily;

2) He's beginning to write things and attaching meaning to what he writes. In his old school, where he had to write lines and lines of words, it was such a struggle to make him do it that almost everytime, I had to do his work myself (with my left hand of course!). But now, Jo is teaching him to write with meaning by first showing him an item like a banana and asking him to tell her something about it. Raiyan then says "A banana is yellow. You peel it and eat it" and then Jo would make him write it down in his own words. Which he is beginning to enjoy doing!

3) He had a complete blast playing with his learning ladders buddies during the event on Thursday that he really cried for Adek when it was time to go home. Before, he just wanted to see Adek because he was attracted to the animal figurines he saw in Adek's room (as communicated my Raiyan himself) but on Thursday, he actually said "I want my friend, Adek". Even throughout the afternoon, he was literally inseparable from Adek and everytime Adek was not around him, he'd be shouting out "Adek! Adek!" and when he found Adek, he actually put his arm around Adek and said "there you are!" (Uhuks-hearts melting again..)

4) His drawings are so so so much better than how it used to be. He has also started to draw non-animal items, like a house, a forest, a mountain. One time he actually drew the whole family :) and another time, he drew him and his babah standing in front of a pet store! (hinting are you?)

5) I made him watch the famous youtube video of the 2 brothers where the older one put his finger in his baby bro's mouth on purpose and halfway thru regretted it cos it ended up being painful.. well Raiyan COMPLETELY got the sense of humour behind it and he does a WICKED imitation of the boy saying "Chaarrllaayy Bit Meeyy" (real posh brit accent- this is also encouraged from Jo who also teaches him things like "cor blimey!" and "oh gosh!")

6)He's really good with questions like why do we eat? and why do we sleep etc? He will answer because we're hungry and tired resepctively. Now we are working on doing it the other way round: What do we do when we are hungry? etc

7) His receptive language is almost indistinguishable as sometimes it really feels like he understands everything we tell him. This is indispensable during those almost tantrum times...

Speech and communication wise specifically has been wonderful as well lately. Some examples:

- When we had to drive back in 2 separate cars, I was driving the van with Raiyan and Jeff was driving the other car right in front of us, he kept saying "No, leave that car. Babah sit on this chair (where I was seated) and mama sit on this chair (the seat behind him)"

-When he wanted to stay on with Adek, he kept wailing in the car "I don't want to go to home because I want to be with Adek"

-Everytime Alisha is in his way, he will always say "Excuse Me Alisha. I want to___(whatever he wants to do then)

Aaaahhhh.. now that the launching is over, I am looking forward to blog more about Raiyan and his progress! Till next time!

Week 16 Progress

It seems like Raiyan's receptive language has gone far beyond my initial expectations and this means that Jeff and I really have to start believing that he DOES understand a lot of things that we say. This has been very helpful in trying to reason with him when he refuses to do something we tell him to. For instance this morning, he didn't want to get out of the car once we got to Kerri's house because as HE said himself, he wanted to go to school. Later on, Kerri told me that she had to give Raiyan a mini lecture as to WHY he still has to come and see her despite him wanting to go to school because it is only through her will he be able to talk better with his teachers and friends at school. And surprisingly, it seemed like he completely understood what Kerri said because as soon as he replied with a hesitant "okaayy..", he ended up being happy and motivated for the rest of the session!

At the same time, because his receptive language is so good now, we ALL have to remember not to underestimate that knowledge he has because you just might not know what he'd be able to eavesdrop in when we're having our casual conversations!

Raiyan's expressive language is also coming along really well though there is still a long way to go. The key factor is to literally get him to talk and talk and talk all the time... I guess I have to admit that in my already verbal life (whether at work or in social situations), I talk a lot already. So sometimes it does feel cumbersome to force myself to talk when all I want to do is just sit back and relax but NO.. this is just TOO important and so I will continue to not shut up ever!!

His achievements of late are:

• Pronouns: He has mastered "he" or "she" and is almost there with "they". He has also gotten "my" and "your" but still gets confused sometimes. Trying to generalise "his", "her" and "their" now;
• What, Which, Where, Who and Why questions are almost mastered except when you mix them up! That is what we're trying to practise more of now. Slowly starting on "when" questions too.
• For the "where" questions, we are encouraging him to be more descriptive and getting the language out instead of him just pointing to where the thing is. For eg, we ask "where is your nose?", instead of just pointing to it, Raiyan will say "under my eyes."
• His abstract thinking is improving. When asked "what is the same with a parrot and a macaw?" Raiyan said "they are birds, AND they fly AND they'er colourful". We are doing more of this but making it more natural and not necessarily categorising the items in categories which we know he loves to do!
• His logical thinking is great! He especially loves this set of "irregularities" flash cards where a picture clearly has something wrong in it. For eg, a picture of a books in a toaster. We then ask Raiyan what's wrong with the picture, and he says "you read a book. bread goes into toaster." And of course being the cheeky boy Raiyan is, he'll be correcting this in a "duh, that's not supposed to be that way" tone! hahaha the little corrector!
• Raiyan has no trouble initiating conversations with others too. He would ask "what is that?" or "where is she?" etc. This morning, when I was with Kerri in the living room, I can actually hear Raiyan having a chit chat with Kerri's husband in the kitchen!

In terms of Raiyan's personality, I guess I'm not all that surprised that he's being more strong headed these days. Lately, he keeps protesting to do things but instead of tantrumming he will just say "stop it. I don't want to" etc etc. One particular thing he's so against nowadays is shaking others' hands and saying bye. His argument is always because he's doing something at that very moment. This just compels me to reason with him as to why it is important to shake his elders' hands and if that doesn't work, then I would take away what it is he's preoccupied with UNTIL he agrees to shake hands and this has been working lately.

Apart from the protests, I am amused to discover that he has a really cheeky sense of humour. As I have mentioned earlier, he just LOVES to correct things. Well basically he loves it when others are wrong and he is right! To the extent that sometimes he'd be debating with J on some things and when J gets it wrong he will laugh out loud!!

More stories next week!

100 Days Progress!

Yes, yes I do admit to being ridiculously behind with Raiyan's progress update. FIVE weeks to be exact.

There's no special story or significant justification behind my lax in not having done so. It's basically no more than just a loss of momentum due to inducing factors like school holidays, reduced therapy sessions, increasing workload at the job front for pweshes mama including a 5 day overseas trip... but perhaps the most substantial cause was the perfectionist in me succumbed to the pressure (which I realise I've placed upon myself - siapa suruh promise to give weekly progress ?) and as a result, rebelled from updating altogether!!

So I surrender. It's no longer going to be a weekly thing, nor bi-weekly and nor monthly. Let's just say that to help avoid a "ritual", I'll just post a progress post whenever I feel like it ok!

Furthermore, all the other random stories I tell still blends in many aspects of Raiyan's progress anyway right? So I'm hardly not reporting on his progress aren't I? (Ok enough defending yourself dude, I'm sure nobody else but yourself has placed such expectations on you! - pweshes inner voice).

BUT anyway, with this being the 100th day since Raiyan started his ABA therapy, I think it is momentous day for me to list out ALL of his achievements, at least those within the walls of his therapy sessions:

Raiyan has now generalised (employs on a daily basis OR "biasa udah"):

• Answering yes or no to questions posed to him;
• Many verbs including standing, sitting, eating, clapping, sleeping, laughing etc etc
• Naming body parts
• Naming clothings
• Naming all the rooms and things in the house
• Possession (Raiyan's nose/Mama's book/Alisha's doll)
• Pretending
• Can answer basic social questions like "what is your name?", "how are you?", "how old are you?", "which school do you go to?" and more
• Imaginative play
• Opposites
• Displaying and recognising emotions such as happy, sad, angry, scared, surprised and tired
• Prepositions such as on, in, under, beside, behind, front, over etc
• Greetings. He'll bagi salam or say hi and say bye easily
• Say short sentences that start with "I want.." and "Can I have..." and "I think it's a...", "It's a ..." "I see a..." and "I have a..."
• Hold pencil properly and write the alphabet appropriately
• Can follow simple auditory instructions
• Can sequence 5 picture cards, which comes first, 2nd, 3rd, 4th and last eg. a scene of a boy eating or opening a present
• Desensitised with new sounds
• Loves to read story books and able to understand the story
• Functions of certain things like pen, cup, car, chair, plate, and will be able to answer for eg. what do you drink with? with a cup!
• Can list out simple categories such as fruits, musical instruments, transportations etc
• Can answer random where questions?
• Can answer random whose questions?

We are still working on:

• Exchanging information (conversing)
• Trying new foods
• Desentising touch of wet and dirty things
• The "l" phonetic
• "my" and "your"
• pronouns: he, she, I, you and they
• First and Last but when you mix the sequence around he still gets confused
• Why questions?
• Reciprocating more social questions
• Gender: man, woman, boy and girl

Just starting on:

• Abstract thinking, For eg, his one track mind cannot handle an apple being a fruit AND a thing that is red.. We have to teach him that it's possible for something to have more than one purpose!
• Cause and effect
• Describing things more flowingly
• More critical thinking
• Imitating gestures

Syukur Alhamdulillah, Raiyan has really come a long way the last 100 days! Looking forward to the days ahead!

Thank you all of Raiyan's beautiful readers for all your support!!

What not to say

Since Raiyan has been diagnosed, it has been a roller coaster ride in trying to share it with others, whether it's family or close friends or colleagues or acquaintances. I'm sure you realise by now that I have no qualms whatsoever about telling others of Raiyan's condition. Any uneasiness that I may have when wanting to share our story is more due to my fear of putting the person I'm telling in an awkward position when they first hear of it. Which is why having this blog is so important to me, Jeff and Raiyan. It's not only to help us be better understood without the risk of getting into that tricky situation, but it also helps those who read it (even close family and friends can be clueless too!) remove any preconceived thoughts they may have and to be more prepared and confident to talk to us about Raiyan.

Nevertheless, I can still understand that just reading this blog wouldn't automatically make everyone completely confident on how to react when talking to me about Raiyan. Especially for those who cannot relate to the situation, I recognise the difficulties in you trying to scurry for an appropriate response when you just feel like your mind is BLANK. My advice is to just listen. Remember that you are probably feeling the way you're feeling because you just don't know how to feel. Which is even more reason to just listen so you can learn more about the issue and then form your opinions. Even though you may be compelled to look shocked and act completely sympathetic since autism is usually portrayed as something bleak, try to keep an open mind and anticipate the possibility that it may not necessarily have to be that way. At the same time, don't act like it's no big deal either! I can speak for MYSELF that you don't have to feel ENTIRELY sorrowful for me because in all honesty, our family is in a good place right now. Yes, I agree that we equally face the challenges that come with the diagnosis but alhamdulillah, Raiyan is doing very well and along the way, we have also discovered what a special boy Raiyan is BECAUSE of the autism and NOT DESPITE of it.

In conjunction with World Autism Awareness Month, apart from raising awarenss on the condition, I personally feel that it is also important to educate the public on how to react around families with autism. Which is why I just had to link this post by a mother of a special needs child on what NOT to say to a parent of a special needs child. I am still in awe as to how another mother halfway across the world can still go through the same experiences that I have gone through!

Please remember that I DO NOT blame others who may have said some of the things listed out in that post. I still do believe that there is so much ignorance and misunderstandings on autism that I can totally empathise with the fact that sometimes you just really do not know what to say and wouldn't realise that what you said was actually hurtful.

I can only hope that with more awareness and understanding, I along with other autism/special needs parents can enjoy the uninhibted freedom of talking about our children as much and as animatedly as other parents! Because frankly there are just so many interesting tales to tell! :D

A Trip Into Raiyan's Mind

Auntie Wen Wen came back from Bangkok this morning and in her traditional pweshes darling auntie ways, bought each of the babies some goodies from her shopping expedition. Even though she (and along with everyone who knows Raiyan) is fully aware that Raiyan is verrryyy fond of animals and that up until about 2 weeks into his therapy, was actually an obsession for him, he has somehow proven to us in the last few weeks that even though he still dearly adore that part of nature, it however never reached a point where we would get worried over it reverting back to being an obsession.

So it is understandable that Auntie Wen Wen (who left for Bangkok on Friday night) found this t-shirt from Jim Thompson absolutely adorable and a tad frighteningly perfect for Raiyan:

I Wove My New T-Shirt

Jeff described it perfectly when he saw it: “WOW! It’s like Raiyan’s mind vomited and landed on this t-shirt!”

Not surprisingly, Raiyan took an immediate liking to the t-shirt and wore it straight away after Auntie Wen Wen gave it to him early this morning. So excited was he to wear it that he didn’t even bother to take off the t-shirt he was already wearing and ended up wearing 2 layers but yet not perturbed by how hot it must have been.

What I failed to mention to Auntie Wen Wen whilst she was away was that on Raiyan’s first therapy session with J on Tuesday after more than a week, Raiyan had a medium intensity tantrum because J brought a box of farm animal figurines but didn’t let him play with it when it was time to move on to something else. He cried and cried for 15 minutes until he actually fell asleep (hmm... scarily feels like the old pattern coming back huh...). I was actually very surprised that that happened because in my judgment as a parent for the last ten days, I had noticed him talking more about animals but I still didn’t think it was obsessive because he was always able to tear himself away from it when I told him to. But later that night, Jeff and I couldn’t help getting a bit worried because he kept throwing mini tantrums here and there just because he wanted to do things we didn’t allow him to. Instead of letting ourselves get too down about what was happening before us, especially since we haven’t witnessed such tantrums in quite a while, we just deduced his behaviour as an extended frustration from his tantrum with J for being denied the farm animals and didn’t dwell on it further.

But it didn’t stop me this morning from thinking this t-shirt might cause similar problems too. So I called my sister from the office, voiced my fears and asked if she can try taking it off at any possible opportunity. At lunchtime I was a bit startled to see that he was STILL wearing it but was slightly relieved when sis said that she had actually forgotten to try and yank it off him. I wasn’t really up to putting up a struggle during my short lunch break so I just let it go.

BUT, come bath time in the evening; I felt like I was re-visiting a nightmare that I have not experienced in a long time. Raiyan screamed and screamed “Jungle t-shirt! Jungle t-shirt!” countlessly whilst throwing his naked self around on the floor and the couch for almost an hour. He refused to wear his pyjamas and upheld his usual protest that always gets under my skin- refusing his dinner. Following what just happened 2 days ago, I panicked and nearly went crazy myself. Old memories of previous struggles came flooding back glued with overwhelming feelings of fear that this might be the consequence of Raiyan not having therapy and school for a substantial amount of time.

Thankfully, Jeff came back home in a completely rational state and tried bargaining with him.

His tactic to Raiyan?
Babah: “Raiyan, first eat dinner, second wear jungle t-shirt for 5 minutes ok?”

But Raiyan’s reply was simply “No. No eat. I want jungle t-shirt now.”

After coaxing for quite a while along this line, Jeff had to get more creative and went one step further:
Babah: “Ok, if you wear jungle t-shirt, then you eat ok?”

Thankfully, Raiyan reluctantly muttered “okay”

And syukur Alhamdulillah, upon having the t-shirt on his body, he obediently sat at the dinner table and finished his whole dinner... sigghh.... and after he finished his dinner, I told him he can wear his t-shirt for 5 more minutes to which he agreed! And sure enough, he took the t-shirt off himself with no drama at all after that..

Jeff and I still can’t help thinking we can’t comfortably leave Raiyan with anybody else just yet because it is sad fact that for now, only Jeff and me can get through to him. What was scary tonight was that even pweshes mama felt lost and surrendered to babah’s rescue in the end. If I can still feel like that, imagine how others can feel upon seeing Raiyan have his tantrums?

At the same time, we still didn’t allow ourselves to over analyse the situation so much and to jump into conclusions about Raiyan regressing due to not having therapy for more than a week. Furthermore, we tried to be empathic thinking how perfect that t-shirt must be for him. As Jeff said, that must be what his mind looks like!

Also, we focused on the positive in that we were still in control over the animal t-shirt in that we can use it to our advantage to get what we want. Concurrently, Raiyan is also showing his intelligence by using it for HIS advantage to get what HE wants.

Aaahh, I can just see ten years from now..
Mama: “Raiyan, we go for African Safari if you get 10 As ok?” heehee

Week 4 Progress

It has been another great week for Raiyan. His speech is still coming along in a steady pace but it’s his change in behaviour that is really making me believe that his therapists are true miracle workers. Raiyan is generally now chattier and chooses to be more engaged with others if you were to compare to the times when he would just sit at the computer or in his corner all on his own, dissociating himself from the rest of the world.

I am also happily seeing a genuine personality coming out which before I thought was shielded by his lack of communication and thwarted by all the period of times he spent on his obsession on animals that took time away from him to discover other things. I know the neurodiversity group usually gets offended when one describes autism as being a trap or a wall around the child, but I still can’t help thinking that the therapy has sort of freed Raiyan as he really does seem to be in a happier disposition than I have ever seen him in.

Wow, this week saw a number of major achievements from Pweshes Mama’s point of view and I continue to thank the Almighty every single second of the day for it and not forgetting the utmost appreciation I have for his therapists- K and J, if you are reading this, you guys are BRILLIANT!!

1. Raiyan is beginning to negotiate things for himself now! This is huge because previously, if he wants something, it was either us giving in to him because we couldn’t handle the tantrums OR us not giving in to him, which means leaving him to his tantrums till it stops. But now, since he is able to communicate better, he manages to tell us what it is he wants without shouts and wails. For example when we asked him to have his dinner, he kept asking for his peanut butter toast which automatically leads us to conclude that he doesn’t want his dinner. Until he himself said “Ok, peanut butter toast first, then dinner, ok?” Jeff and I just laughed and accepted the deal and sure enough, he ate his toast first and then kept his promise and finished his dinner straight after! But we have to make sure that we don’t give in too much to his demands, however adorable his tactics of negotiations are!
2. His library book, for the first time ever since he started school, is finally not a book on animals. Every Friday since mid-September, all of his library borrowings has been comprised of books entitled “lizards”, “reptiles”, “mammals”, “birds” and many others . When Jeff and I first packed away all his animals stuff, we forgot about the glitch where he'd able to satisfy his cravings from his weekly library visit. We did inform his teachers about his rehabilitation but I guess it's too much to ask for them to have control over what he borrows. So imagine our pleasant surprise last Friday when he came back home with “We’re from Australia.” Admittedly, he must have borrowed it because of the kangaroo and koala link but at least he is exposed to other aspects of Australia from reading the rest of the book right? Now let's see what his library book next week will be...
   
3. Raiyan puts on his seat belt himself now and the best part about it is that it takes him a while to put it on, sometimes even more than a minute BUT there is not a peep throughout the whole time he’s trying to put it on. This is great because he has better control of his frustrations now. And I don't have to put it on for him anymore!
   
4. He slipped and fell down the other day and when I asked him how he felt, he answered “painful”. :D His therapy has been teaching him feelings along with the facial expressions he has to make to match his feelings so what was funny about when he fell was when I asked him how he felt, he went straight to the mirror and answered me WHILE looking at the “painful” look in his reflection! I am so thankful for this achievement because hopefully after this, if ever he is in pain, he would be able to tell me about it and where it hurts.
   
5. We know that Raiyan has a strong visual memory (I will post a video of him visually memorising his picture book nanti) but this week I discovered he has an amazing auditory memory too. He can list 10 animals (of course), 10 fruits and 10 countries that I told him, in the same order as I told him to. ( I will post the video of this also shortly).
   
6. He is beginning to generalise labelling all the rooms in the house, including the items that can be found in them. Again, this is very helpful not only when I want to ulun him to get me something but it’s invaluable when HE wants something as we can direct him to get it himself.
   
7. We’ve set up a table top corner in our gym/chillout room where we place his yellow therapy bag and sometimes Raiyan goes in there himself and asks US if we want to join him! At times this happens when the pweshes babah and mama are all comfy in the TV room but are left with no choice but to join him as god forbid you would reject an invitation by your child to study right?
8. He went on a swing for the first time in his life! You can read more about it here.

I do find that Raiyan can lose some words that have not been reinforced in a while as how I noticed his verbs were getting weak this week. To help, I have started taking pictures of everyone in the house doing things and hope to compile them into an album and study the verbs with Raiyan. I hope this is more helpful than the flash cards he has been using before because at least in these pictures, they are people that he is familiar with.

The tantrums are still there unfortunately but I’m not sure if they are less or we are coping with them better... hmm, I think it’s the latter..

Syukur Alhamdulillah for another fruitful week!

One Wedding and A Break-Up

Raiyan, Zaty, Alisha & Zana

Jeff's nephew got married at UBD last Sunday and we managed to conjure enough courage to bring Raiyan along. The last time I went to a wedding, I just brought Alisha and everyone asked where Raiyan was and so I couldn't help feeling guilty (even though I know I shouldn't) about leaving him, the bigger sibling, at home. And since we're on a roll with introducing him to new things, we thought we'd just give it a go.

The last and only time we brought Raiyan to a big family function was in December 2006 (you can read about it here) and he was a complete nightmare. Of course at that time, we weren't aware of his condition so I ended up getting very angry with him and we just left the function abruptly. But this time round, I thought we're definitely more prepared. On our part at least, we can withstand the stares and curious looks because we already understand Raiyan to be how he is and if anybody would want to insist on asking why he's like he is, we'll simply say "he's autistic." On Raiyan's part, I made sure we don't bring anything that he is obsessed with that would give him any reason to throw his now infamous tantrums.

For the most part, it went quite well actually! He stayed with me, Alisha and his cousins Zaty and Zana most of the time. Yes, he did run up and down the hall with the sporadic shoutings but nothing so obviously different from the next child running alongside him. Towards the time of the Doa being read he started getting restless though which is understandable as by that time he's been there for almost an hour. Out of respect, Jef took him out of the hall. Raiyan then mistook this as going home time so he started shouting out for his cousin and that's when his new obsession finally dawned on us- his cousin Zaty.

All this time, he has always been more clingy to Zaty than the rest of his cousins but we just always thought that it's because she knows how to layan him. But Jeff and me would notice that Zana devotes an equal amount of attention too and yet he seems to be more fixated on Zaty. For the past year, everytime we visit the neneks' house or Zaty's house, there'll always be a mini drama when it's time to leave as naturally he doesn't want to let Zaty go. There was once even a ritual of driving him around the block with Zaty before he'd be ready to say good bye. (Don't worry, we've stopped doing that now).

But in recent weeks, his cries for her seems to have gotten worse and yet we didn't see the flashing growing obsession lights. I had an inkling the week before when Zaty actually followed Jeff and Raiyan home. So I thought the next time he sees Zaty, let's try and not give in to him and just bluntly take her away without explaining anything or trying to pujuk him.

I was right. At the car park at UBD, Jeff and me just quickly said bye to Zaty and told her to just go straight to her car and don't look back (and assured the little sweetheart that she doesn't have to feel guilty as what she's doing is HELPING him in the long run). Then Jeff, F.I.L. and me had to walk all the way to our car at the end of the car park with Raiyan screaming away "NOOO! ZATYY PWIISS (a.k.a. please..)!!!PWWIISS ZAAATTYY!!" and there was Jeff and me plainly ignoring him for the world to see. I tried a few times to avert his attention by asking him if this or that is our car but he wouldn't have any of it. He was very, very distressed. Needless to say, he cried for more than an hour after that.

It's so much harder when the obsession is a person compared to when it was just things, because it's natural to just think that he loves his cousin and just wants to spend time with her and so why should we deny him that, right? And at least he's showing loving affection to another person which is always good right? But as we know, with autistic children, obsessions and rituals can become really serious and permanent. Zaty is just blossoming into a teenager and that is an enough struggle on her part without having to worry about a young boy following her around until god knows when (inda jua cool tu!). So we're probably going to have to do this a couple of times until he can actually say bye to Zaty without crying. We also have to make this intention clear to the family to avoid them thinking that we're just trying to separate him from Zaty. We just have to make Raiyan understand that it's ok to say bye to Zaty because InsyaAllah he'll get to see her again and in the mean time he'll have his family to play with at home. I cannot stress enough on how important team effort is in this type of situation. Otherwise, we all might just have to pay extra for Zaty's honeymoon cause Raiyan wants to come along!!

About Raiyan And His Journey

At 4 and a half years old, Raiyan was formally diagnosed to have autism spectrum disorder by a child psychologist from ISADD, Australia. This is despite not having received a diagnosis from the Child Development Centre since he was 2.

Nevertheless, we are still very thankful to have discovered this in time as it is a known fact that early intervention (any time between 18 months to 7 years) is crucial for the progressive development of a child with ASD.

We feel very fortunate to have found Learning Ladders Society who :
a) Helped connect us to ISADD to get the official diagnosis;
b) Educated us immensely on this rising epidemic; and
c) Gave proper guidance on the available therapy for Raiyan.

Alhamdulillah, after just 2 weeks of undergoing Applied Behavioural Analysis (ABA) Therapy, we saw miraculous improvements within Raiyan.

Through this blog, we hope to show everyone what a vast difference early intervention can make along with the importance of a properly guided and managed therapy programme that is based on proven scientific evidence and caters specifically for the individual child.