Animal Instinct?

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

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

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

How does that make any sense?! Hahah!

It could also be a....

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

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

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

It could be a bird's wing..

He rolled it up to become a telescope..

It could be a bridge

It could be a little girl's hair!

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

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

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

Overworked

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

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

Personality or Trait

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

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

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

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

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

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

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

Raiyan the Author!

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

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

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

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

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

Brilliant!!

Raiyan's Auditory Memory

This is Raiyan about 2 months ago when K had just incorporated training his auditory memory more into the therapy. So I turned it into a game that I was sure he'd thoroughly enjoy, to list out 10 wild animals in a random order all from me just listing it out to him beforehand.

Actually at first I just suggested 5 tapi Raiyan yang pandai2 and confident to do 10.. and sure enough, he didn't disappoint as you can clearly see and hear...and I swear, I only listed out all 10 animals (after having together decided what the animals should be) ONCE..

Oh and at first i suggested shark but was told off by Raiyan because "noo, a shark is not a wild animal.." Wokeys then, whatever you say modern Dr. Dolittle..

The Love Affair with the Computer

Raiyan started independently playing with the computer just 3 months short of his 3rd birthday. I initiated it by playing a number of interactive games on http://www.sesameworkshop.org/ and http://atv.disney.go.com/playhouse which he loved doing together with me. Obviously it got to a point where he was loving it too much that I started to get a bit sick and tired of playing the same games probably 10-15 times in a row! More because I wanted to give myself a break from it without having to deprive him of the entertainment he was clearly getting, I tried my luck and introduced him to the mouse so he can play the games himself. I swear to god, he mastered using the mouse within 3 minutes and he’s been off doing his own thing with the internet ever since.

After having ventured through all the interactive games, short movies and song recordings from the abovementioned sites, he managed to find newer sites to play with. At first I was obviously bewildered as to how he could have done this but I slowly discovered that he would just click on various links until he stops at something he likes. The amazing thing is that sometimes it would take him more than 5 links but every single time if he wants to re-visit that site he likes, he would remember the sequence of links to click to get to where he wants to go.

Raiyan 3 years old

He would get very proficient with computer games too. To be honest, I didn’t really spend much time doing this with him as this has been more of a favourite pastime of him with his grandma and she would always tell me how amazing he was in his ability to spot things that she couldn’t and how fast he was with his hands in terms of timing and precision. Without a doubt, he could have given some grown ups a run for their money in some of the games he was frankly, very brilliant at.

When he started getting obsessed with his animals, what he would spend hours doing was open up all his animal books and wikepedia all the animals he could find. Not surprisingly, this was probably where he learnt that a whale is a mammal and not a fish, that a polar bear doesn’t live in Antarctica but only in the Arctic, how he knew of some obscure animals like the gharial and also the many different types of crocodiles out there and how he decided that his dream destination is going on a safari in Africa (this choice even beats going to Disney World!).

After having met other parents through Learning Ladders, I discovered that Raiyan is not the only autistic child to love the computer so much. One boy managed to spot his teacher’s password (just by watching her type it) and accessed her email without her knowing at all! Another boy managed to create his own user account on the computer just by being in the same room whilst his mum was creating her account!

I used to see the computer as a serious double edged sword. I loved how Raiyan can keep himself entertained by it, how much he was learning things on it and how he can hone his skills in educational games that even some adults find trouble playing. But at the same time, he would spend such prolonged times on it that caused him to completely disconnect with the rest of the world, took him away from being interested in anything else, made his obsessions with animals worse and also was the main cause of his self talk and echolalia (he would repeat what was being said on the children websites like “to turn right, click on the red button etc etc”). And it goes without saying but the tantrums would be just terrifying everytime we wanted him to switch the computer off.

Alhamdulillah, once he started this therapy and his obsessive tendencies started to lessen in intensity, he started to be able to play with the internet a few minutes at a time and then move on to something else. (Take note that in the early stages to avoid him playing with it altogether, I had to change the home page to a site that didn’t have any search engines on it. Shortly after seeing how it wasn’t possible for him to get to a site that he liked, he just naturally gave up).

But this week, because it is his school holidays, I noticed him slowly returning to his old computer nerdy self... I guess with no school and no therapy during the day, “playing” didn’t come so naturally to him if compared to times when he would just follow up at home what he had done that morning. And when he’s at his grandparents’ house the whole day, there are less things for him to play with too since most of his toys are at home anyway. So it’s no surprises that he resorted to spending his time on the computer for most of the day over there. That didn’t worry me so much as I can understand that it might be difficult for him to entertain himself for the reasons I had told you. But what I was taken aback with was the fact that once he got home, he still insisted to play with the computer and refused to have his dinner and had a tantrum when I switched the computer off.

This has helped remind me of the fact that Raiyan is still a work in progress and that just because he seemed to have been able to freely come and go from the computer doesn't mean he won't go back to his previously obsessive ways if the circumstances around him causes him to do so.

At the same time, having re-visited the computer since he started therapy have also reminded me of all the things he's good at when he's on the computer that I just thought that perhaps I should still encourage him to continue with some of them..

At the end of the day, it's really about finding the balance of letting him enjoy the computer without it necessarily becoming an obsession. Because even though it can get quite worrying when he's stuck with it all day, sometimes I just have to give him the benefit of the doubt that he's not necessarily obsessed with it but maybe it's something that he just really enjoys, not unlike when typical children have their hobbies too. Furthermore, seeing the amazing things he can do on the computer should only just encourage me to let him carry on with what he loves doing!

Raiyan teaching Alisha some computer skills

Pweshes Philosophy On Autism

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

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

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

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

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

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

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

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

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

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

Ten things I love about Raiyan

1. I love how it’s so easy to make Raiyan laugh. And I’m not talking about mere giggles, it’s those loud cackles that are so contagious, he cheers up the whole house kind of laugh. The number one and always guaranteed way to make him laugh is to play chase with him. From as long as any of us in the family can remember, Raiyan loves being chased. Throughout the 4 years of him growing up and till this day, we still resort to chasing him anytime we try to avoid a wannabe tantrum escalating into a full-fledged one. It’s simply amazing how a genuine laugh can be pulled out almost instantaneously every time and how it never fails to make any of Jeff and my horrible days do a complete 180 turn;


2. I love how he’s just particularly affectionate to people very close to him. I know that may sound a bit selfish but when he plainly chooses me or his dad in such an obvious sort of way over anybody else, I just feel like he does that because I deserve that accolade and attention from him.. And that nobody else can take that away from Jeff and I;


3. I love how he just loves, loves, loves to learn! Even when he was as young as 16 months, he would sit still with Jeff and I and go through a whole book together. Even though he wasn’t able to say any of the words and wallahua’lam, we don’t know whether he understood anything read off the book, but somehow books has just always fascinated the boy. We always thought it was puzzling how he learnt the alphabet and knew how to spelt words before he actually spoke and understood them but that just goes to show what kind of model student he is! I remember every time I picked him up from his old school, he would be surrounded by his teachers where he would be reading his Peter and Jane book out loud for them. And I remember feeling so proud every time his teacher would tell me how “ia ani suka belajar ah”.. Alhamdulillah...


4. I love he's constantly amazing me with the remarkable things he can do like solving wooden puzzles in record time, visually memorising a random sequence of 20 animals in his “my zoo” book, being able to tell a jaguar and cougar apart, playing Big City Adventure and all sorts of computer interactive games that are meant for adults and beating some adults along the way (he was once upset with his Auntie Wen Wen for causing him to lose his game when he asked her to proceed for him hahaha), being able to read anything now (though he doesn’t necessarily understand the words), being able to remember a room and its contents after visiting it again 2 years later, being able to know directions to go somewhere (especially the ins and outs of Singapore Zoo), being able to write the whole alphabet and numbers at 3, ride a bicycle at 4 and many more!


5. I love how he has some rituals that I am grateful for, like when we go to a bookshop, his ritual for the past year is to go to the children’s section, pick out some books to read there and once he’s done, puts them back into the shelf! There was one time, Jeff and I forgot about this ritual and actually wanted to purchase the book for him and it’s so endearing how it took him a while to register the fact that he could have it because he still kept on putting it back on the shelf after he was done with it! So sweet! Another ritual I like is every petang when he’s cycling around the neighbourhood with Alisha and the nannies, he cycles a certain route and would always come back within 20 minutes (I don’t know how he does this as he doesn’t know the concept of time but he automatically just comes back home every time, after 20 minutes).Naturally, being the worrywart parent that I am, I'm happy as this way, I don't have to worry about him wandering off somewhere else and I can be confident he will come back at a certain time;


6. I love how he likes to be clean and organised. So whenever he spills his drink he will get a tissue and wipes it himself..bless..and after all these years, all of his toys are intact and none of them or their parts are lost;


7. I love how he doesn’t have any ill-feeling towards anyone.. I’m generally a short tempered person and I always have been (though now I’m clearly forced to work on that faux-pas whilst trying to raise Raiyan) so regrettably there have been times in the past when I was overly hostile with him but never once did he understood what I was doing and he would still cuddle me candidly straight after..;


8. I love how Raiyan really appreciates anything we buy for him (obviously sometimes he’s over appreciative when those items become “items of the week”). Even now, he will still play with toys and books that we bought him 3 years ago!;


9. I love seeing him get so excited about things he loves to do, like going to the beach, going to jungle gym, going to the zoo and going to the playground. And I know he really, really loves these activities because sometimes I catch him looking through our pictures in the computer of him going to those places;

   
   
10. I love how generally obedient he is and that 95% of the time, he really does listen and does what we tell him to do. I appreciate him switching off the tv when we tell him to, taking a shower when we tell him to, put on his shoes when he’s about to go out, get in his car seat and puts on his seat belt, carrying his backpack and lunch box whilst walking to his class and many many more..
    

There are certainly many more attributes of Raiyan that I love, but then if I was to list some more then it wouldn’t match the “witty” title I followed off Heath Ledger’s (R.I.P) breakthrough movie innit..

All in all, I really do believe in my heart that Raiyan is truly a blessed gift from God and I can honestly say that Jeff and I are very lucky to have him. He makes our life 250% more interesting, he has opened up our minds and hearts bigger and wider than we can ever imagine and he teaches us to appreciate and re-appreciate all the small things in life and he will probably continue to do so till the day we die.

For those parents that may be scared or terrified of the prospects of having an autistic child, please don’t be. Not only is there so much hope for them now (insyaAllah), you will be more than pleasantly surprised at how much an autistic child can really, really enrich and enlighten your life. :D