Inseparable

Adek & Raiyan

This was Raiyan with his new best friend Adek (who he's being a tad clingy to I might add... ) at the end of the Launching Ceremony last Thursday.

How I wish I know what's going through Raiyan's mind this very minute this picture was taken..

I'm just going to comfort myself with the thought that he was very, very happy.. :D

Beautiful photo courtesy of Dino and you can see more at Learning Ladders Multiply Site.

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!

2 heads are better than 1-Part II

The Brunei Times ran an article on the Society again today, entitled "New Society Offers More Choices"briefly describing the main differences between Learning Ladders and the pioneer autism NGO in Brunei, SMARTER. I am personally not surprised that such an article was published shortly after our official launching because admittedly, this must be a query that goes through a lot of people's curious minds, especially since SMARTER has made such a large contribution to the cause in the Bruneian Community to this date through their countless fundraising activities and awareness campaigns (hence why does Brunei need another society to deal with autism?).

As explained by the article, the main difference between the two organisations is the type of therapy available for the children. Learning Ladders use ABA and SMARTER (quoting the President) use Independent Living Skills. First tip to parents: Google the 2 types of therapy and study what each type is all about.

For those who are not really in the know about autism spectrum disorder, there are many, many types of intervention strategies avaialable and specific to autism. To name a few, there are Applied Behavioural Analysis, Applied Verbal Behaviour, Eclectic Teaching Methods, TEACHH, Floortime, Speech Therapy, Music Therapy, Art Therapy, Sensory Integration Therapy, Occupational Therapy, PECS, Biomedical Intervention and many others. As you can see, parents are faced with many different options to choose from in finding what's the best method for their child. REMEMBER, autism is a spectrum so no one autistic child is similar from another so one can benefit from one type of therapy and another can benefit from another type.

I sincerely do not want to enter into a debate over this matter but simply to say that in our circumstances and in the circumstances of the other families of Learning Ladders, we have tried some other kinds of intervention but after not seeing any progress with the children, decide to seek something else. And Alhamdulillah, fortunately for us, we discovered ABA worked wonders for our children. [At the same time, we completely acknowledge the fact that it may also not work for other children].

Seeing the success with our own children, it is thus natural for us to want to share this discovery and let other parents in with the opportunity to try it if they are still seeking ways to improve their child.

Please, I appeal to all the curious minds out there, just try to understand the rationale behind the society to be JUST that. This is about the children. About providing the best chances for these children to flourish and live a fulfilling life. Let's leave all the politics to Clinton and Obama for now okay?;-)

Syukur Alhamdulillah.. and Phew!

After all the continuous hard work for the past month, Learning Ladders Society finally had its official launching ceremony yesterday afternoon at Empire Theater where we were so very fortunate to have been graced with the attendance of Her Royal Highness Paduka Seri Pengiran Anak Isteri Pengiran Anak Sarah and other distinguished guests. You can read about the event in this Borneo Bulletin Article , this Media Permata Article and this Brunei Times Article and look through some beautiful photos here, here and here.

As you can imagine, all the members of our small society are still on cloud nine as just a few months ago, yesterday was nothing more than just a dream (which I bet a lot of other people thought so too). But nevertheless, the success of yesterday's event is a testament to the dedication, faith and sheer perseverance of Sharina and Linda in their quest to help families affected by ASD with the hope that all children with ASD should be able to be given the opportunity to strive towards an independent life. I hope that the Society has managed to show the importance of early intervention (as early as 2 years old) and how the earlier the child is diagnosed, the earlier he can start the recovery process and the better chances it will be for him to live an independent life in the future.

As stated in Sharina's opening speech and as something we cannot stress enough, Learning Ladders Society is only another option for autism parents out there to explore. We are not here to replace or compete with any other organisation that deals with children with ASD and developmental disabilities. With the rising numbers of children being affected by ASD, it is timely that another society be established to help complement existing providers and in fact, we hope that there will be other organisations set up offering other types of intervention therapies for children with ASD as we all know not all ASD children are alike, so one can benefit from a different type of therapy than another.

We were delighted to see the attendance of the relevant authorities and hope that a working relationship to help assist these children can be arranged soon.

We are over the moon grateful for all the sponsors that stepped up and contributed to the successful holding of the ceremony. I can understand some people will be slightly bewildered as to how a new society can host such a grand affair, but to explain, they were all sponsored in a majority way. Thanks to Empire Hotel for the venue, Syazana's Production House for the short movie and the giant screen (Love you Rachael!), Sunlit for all the posters, banners, leaflets, goodie bags, Jerome from Jen Studio for all the photos and all the other sponsors for their generous monetary contributions which without them, there was absolutely NO WAY we would have pulled off yesterday's event. If anything, the amount of sponsorship we got for a new society and within such a short period of time only goes to show how important our cause is and how convinced these sponsors were in wanting to help.

Lastly, I also have to personally give an emotional expression of appreciation to all the members of Learning Ladders. In particular to Sharina, Linda, Mimel, Naneh, Molly, Uzie, Ka Lella, Ann, Kerri, Jo, Suhaila and of course all the hubbies too. No words can describe how I feel towards you all but only to say that now, I can't imagine not having you in my life. I feel so blessed to be associated with a bunch of intelligent, diligent, loving, caring, compassionate, sometimes emotional (hehe sudahtah mengangis ani!), hilarious (esp you mel!) people but most of all, I am so grateful to have people I can talk to anytime, any day who will GET me. There is no doubt that autism has taken over our lives and as much as we want to put it aside sometimes, (because let's face it, not everybody can handle us talking about it), we have to accept that for now, during these intensive early years at least, it is too important and inherent in our very beings that we cannot possibly just toss it aside and not think about it and not expect others to care about it. And for that reason, I cannot underestimate the importance of having you beautiful souls around me simply because we understand and empathise with each other so well.

Now that we are officially established and hopefully more people are aware of our existence and purpose, we can only go on and continue fighting for our cause (We want our school!). Our family is not only looking forward to a brighter future for all of these children but along the way, I am also excited to share more tears and laughter with our newfound family. Love and hugs to you all!

The Dreaded Pox!

AAAAGGHH!! Guess we couldn't have avoided it for much longer since most of Raiyan's classmates have had it in the past month.. Yesterday morning, Raiyan woke up scratching his tummy and true enough, he was all covered in the wretched spots!!

With all the hecticness going around planning for our Learning Ladders Launching and Autism Awareness Event in 5 days time, I think you can imagine that the last thing we expected was to deal with Raiyan having chicken pox at this point in time. We already couldn't imagine how Sharina (our president) was handling it all for the past month when each of her 3 angels had the pox all in a row! And now it's happened to us, FIVE days before one of the most important days of our lives! Sigh...

Today being the second day of the spot attack sees more of them appearing on Raiyan's face so it is highly likely that he won't actually be able to attend the event.. I can't help feeling so sad and disappointed! But at the same time, I've always been the type to think and believe that ALL things happen for a reason so I am content with the trustful thought that there must be a good reason behind why it would be better for Raiyan to not be there on Thursday (though I can't think of ANY now!!-nor can any of our family and friends!!)

But on the plus side, I also have to say how delighted I am that Raiyan has caught the pox at this time of his life. I know that must sound horrible at first instance but what I mean is when I compare to how it was like before, during times when he used to just get the odd flu, I would often think the worst and thought he must be feeling so so terrible when he would just be sitting queitly watching tv endlessly...

But NOW, even though he LOOKS so so terrible with this swollen eyes and lips and all the blisters all over him, he's STILL happily talking away while watching television, he STILL responds to those calling out to him, he's STILL eating his meals (albeit in lesser portions), he's STILL drinking an acceptable amount of liquids (though still not enough water) and STILL able to give in when his ritualistic tendencies are ignored...

The best part was when he kept wailing "get the gatal off! I want gatal off! I want to see the doctor!" (gatal-itchiness)

For me, just that alone is enough to keep me going during these crazy times.. :D

My Little House with Garage!

Raiyan's imagination has improved tremendously that now he can be left with his own devices and construct things without any guidance and assistance from us parents anymore! (The previous post I wrote on him making that big castle construction was with the help of pweshes babah..)

He still loves to play with these set of blocks and here he is independently building his house..

And the cutest part was him adding on the garage bit below and parking the car inside it!

Alhamdulillah! Looking forward to more imaginative play ahead!!

Stinky and Smelly?!

This story is so funny that I find it's worth it for me to confess to something slightly unappealing about myself; I like to wear silk baju kurungs to work a lot but unfortunately with the financial restrictions of late, I'm not able to send them over for dry cleaning as frequently as I should. SO, what I tend to do is febreze them (heyyy I'm sure I'm not the only one who does this-already getting defensive!) before ironing them hoping it will help make them smell fresh and new again..

But this one morning the one that I wore somehow to me still had a lingering sourness to it but I just thought that since I'm wearing it, I'm probably and hopefully the only person who can smell it..

UNTIL, in the car, Raiyan made a sniffing gesture and said "Ugh.. smelly and stinky!!".. I was slightly taken aback with this and immediately thought "he's not talking about me is he??". So I asked Raiyan "who is stinky and smelly Raiyan?"and then Raiyan just embarassingly giggled "hehehe" so I then asked "Is MAMA smelly and stinky??" to which Raiyan replied with a cheeky laugh "Yeess!!"

You can only imagine what state of denial I must have been in in trying to disregard my own stinkiness that it took an autistic child to reveal it blankly to my face!! Needless to say, I went straight back home to change!

PS: I also loved how Raiyan felt embarrassed to tell me so meaning there is some level of social conscience in him to not tell it straight! :D

Raiyan's Friend!

Raiyan had a playdate with Adek, Sharina's angel about a few weeks ago and in the last few days have been asking to go again. When I mentioned it to Sharina, she said Adek was saying the same thing! So Sweet kan!

So that's why during last Friday's ISB Motor Skills Program, I was so excited to get them together. But what I wasn't expecting was them HUGGING upon their realisation of each other's presence! It was the most heart-melting moment! You can practically hear Sharina's and my hearts breaking! Huck!

It's a pity I couldn't get my camera out when they were hugging but I managed to catch these photos of them holding hands going towards the playground:

How can that not make your week?...:D

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!