Week 5 Progress

Syukur Alhamdulillah for another fruitful week!

1. Raiyan is beginning to learn to reciprocate information without prompting. I would say "Raiyan, I have a phone" and he would then respond with whatever he has in his hands "I have a book". I'll go on to say "My phone is rectangle and black" and Raiyan would respond "My book is rectangle and blue!" InsyaAllah, these will be the seeds of having a conversation with him!
2. Amazingly, he didn't act obsessive with his cousin Zaty anymore! The last visit to nenek girl's house saw him saying 'hello' to each and everyone of his cousins AND there was no special preference for Zaty either! The whole night he completely left Zaty alone as he was preoccupied doing his own thing and for the first time in a long time, there was no drama when it was time to go home. In fact, we didn't even realise he was waiting patiently in the car with the maid whilst pweshes babah was still enjoying his ice cream inside the house!
3. When I said he was "doing his own thing" at nenek girl's house, he was pretend playing with a paint brush that he found and he started to act like he was painting all the walls. I asked him "What do you have Raiyan?" He answered "I have a paint brush" Then I asked "What are you doing with the paint brush?" He answered "I paint the wall"!
4. His library book I am happy to report was an actual story book called "The chimpanzees of happytown." Yes, I accept that the animal link is still there but again, the focus of the book was not on the animals but on the actual story line which involved emotions and adjectives that he can familiarise himself more with;
5. Whenever you say hi or bye to him, he will stop and think first before saying your name. Before this, he would almost ALWAYS repeat "hi Raiyan" first before getting it right.
6. He LOVES playing dress up and so far he has pretended to be a farmer, a zookeeper and a pirate. I have to admit that the "costumes" he uses doesn't look anything like the characters he's portraying! But whatever fits his imagination that I'm so happy he's using more of now is GREAT!
7. He knows his classmates's names now! J (his therapist) was kind enough to produce individual pictures of them and now Raiyan is able to name them all. Yesterday, he was even able to point out "Isobel" to us who we bumped into at Kiulap! Before, when he was at his old school, we would bump into some children wearing the school t-shirt and they obviously know Raiyan and was saying hi etc. But naturally when I asked him who they were, I just got a blank look.. so yesterday was a MAJOR achievement!
8. He has generalised (knows very well) the concept of "possession." When K first met him, she would ask him "where's raiyan's nose?" or where's k's hands?" and he didn't have a clue what she was talking about. But the other day, I was asking him whose phone was this phone which I have lent to my sister and he answered "It's usu's phone!" But then I said "NO, it's mama's phone but I let usu borrow it." He still insisted "No, it's usu's phone!" And I kept going "No, it's mama's phone" and he kept going "No, it's usu's phone!" Yay! My first argument with him!

We are also working really hard on his "l" pronounciation which surprisingly appears in a LOT of words. Because he pronounces it with a "W" I think that's why other people can't quite understand what he says compared to Jeff and me. An articulation specialist is coming over from ISADD at the end of the month so we are hoping she can help us more with that too.

Ok then till next week!

2 heads are better than 1-Please support both heads!

Much hearty congratulatory wishes go out to SMARTER and the Institute of Medicine of UBD, for having successfully held the IM Charity Evening Concert at Jerudong Amphitheatre recently. I hope I can speak on behalf of all autism parents in Brunei that we really appreciate and applaud your efforts in not only increasing public awareness on autism in general but in particular, doing so in a manner that shows how special these children are, if only society gives them a chance by viewing them with an open mind and a big heart. InsyaAllah I hope this message can help gain more understanding (and eventually acceptance) from society so that they can learn to be more tolerable of autistic children and their differences instead of judging them purely on their atypical or “peculiar” behaviour. But more importantly, I also hope and pray it will help extinguish all of the unfortunate typecasts of children with autism to be mute, unsociable and “strange” and who will turn out to be nothing more than just a burden to their families and the community (yes, you’d be surprised to know that some people do think that!).

When I first tell people about Raiyan having autism and that he is currently undergoing one to one behavioural therapy, I am always asked why I don’t send him to SMARTER. For those of you who don’t know (and if you are in Brunei, shame on you if you don’t know of them), SMARTER is the pioneer non profit organisation in Brunei that deals with children with autism spectrum disorders. You can read more about them and their activities at http://smarterbrunei.org/ and http://smarterbrunei.multiply.com/.

Over the past years, they have organised 5 national conferences and countless charity events to help raise awareness on the disorder and also to generate funding to assist the children with autism in Brunei. Until Learning Ladders was set up, they were the ONLY body in Brunei to deal with children with autism.

As you know, the circumstances around Raiyan never called for the opportunity to go to SMARTER as CDC never diagnosed him as having autism. From this, you know that we only discovered Raiyan to have autism after being told by K, an applied behavioural analyst who we met through ISB. Since we met her first and were incredibly impressed with how well she understood Raiyan, we decided to go ahead with the therapy programme planned by her. We were also very keen to start the programme after being told of the progress of another boy who after 4 months, from not being able to talk could now answer the phone and talk in sentences. (We’ll have what he’s having!)

Just to show that we never discounted SMARTER from the start, we still thought of going there at the same time but were thereafter advised by K and a few other persons that SMARTER uses a different kind of therapy and to get the best results, the child should not undergo more than one type of therapy at one time.

Through K, we met a bunch of parents whose children are also her clients, and their children ranged between 3-6 years old. These parents are part of a new society called Learning Ladders whose main focus is to raise awareness on early diagnosis and early intervention for children with autism or other developmental delays. Seeing how all of us are lucky enough to catch the diagnosis early with our children (despite almost of all of us having been told otherwise by CDC) and how we are counting our blessings every day for the progress our children are making with the behavioural therapy programme they undergo with K, we can only wish and hope all other autism parents and especially those who are still uncertain about their children, share this invaluable experience, before it gets too late for their children.

Well until that happens, that’s where Learning Ladders can help. Since presently, there is no dependable avenue for you to obtain an official and formal diagnosis in Brunei, Learning Ladders sees the significance of such an action and that’s why we bring in the child psychologist from the Intervention Services for Autism and other Developmental Delays (ISADD) from Perth, Australia every 4 months in a year.

I hope by now I have managed to put across the importance of early diagnosis and early intervention through my blog, especially by sharing Raiyan’s weekly progress with this behavioural therapy. If you agree that all children with autism and those potentially having autism is entitled to this chance, then we wholly and deeply, from the bottom of our hearts, request for as much support as we can to help these children get this opportunity.

As you know from this post, the diagnosis by ISADD is quite expensive and the costs of the therapy are equally costly too and naturally not all parents in Brunei will be able to afford it. For this reason, Learning Ladders welcome any donations, however small, to help subsidise the costs of the diagnosis and the one to one therapy as much as we can to help enable these parents get the early diagnosis and give the ABA therapy a try for their child.

The funds can also be used to purchase more resources such as books on autism and all the tools, equipment and resources used by the therapists and also for the private use of the parents to share. The more resources we buy, the more there are to go around for all the children. When we have more equipment and tools, the children are given more options to learn from during their sessions. Not only will this help prevent them from getting bored (children with autism needs to be entertained with new things as often as possible otherwise they quickly lose interest. When they lose interest, that’s when their typical autism traits resurface), but it will also help prevent the children from getting attached to the items if it is given to them more than a few times.

Just how we utterly appreciate all the support you have given to SMARTER in the past, we are now hoping that the same empathy you have offered them can be equally rendered to our society. Just as how you understand that the children that go to SMARTER deserves the best care they can possibly get at their age, then you could also understand the importance of the younger children deserving a chance to improve their quality of life so that one day they can achieve some level of independence.

As another society that deals with autism related issues, the last thing we want to be seen as is as a rival or replacement to SMARTER. We only have the utmost respect for SMARTER and for all the hard work they have done all these years. Without them, there would be no understanding on autism in Brunei and all children with autism would just be looked down upon and ridiculed for their different character.

But when you look at it realistically, with the rising rates of children with autism now, it’s not reasonable to expect SMARTER to be the ONLY body expected to take care of ALL of these children and soon, adults. Our society is only trying to relieve the future burdens of SMARTER by insyaAllah, reducing the numbers that go to them so that they can continue to focus on the ones that really need their assistance.

Let’s all work together to achieve each of our objectives whether it is to get an early diagnosis and start early intervention for a young child or looking after the welfare of the older children and adults with autism, because in the end, we share the common dream to better the lives of everyone involved.

The thin autism line

Is he? Isn’t he?
Yeah he’s ok, he’s developing well but just a prob a bit slow..
Ermm is it still possible he’s autistic
But CDC said he’s not
But why is he still not talking to us as well as his peers?
But at least he’s talking..
Blah blah blah

And this went on and on for 3 years.

I am ready to admit that I was in a subconscious denial about the autism thing. Otherwise, I really cannot understand as to why I never looked it up. If I DID, I would have learnt earlier on about all the typical symptoms that Raiyan clearly had that I did not know were to be autistic symptoms. Symptoms such as lining up his toys, getting uncomfortable with crowds, not knowing how to pretend play, unwillingness to try new things, scared to go to new places, incessant need for the same routine to be followed through every time and of course the uncontrollable tantrums are apparently recognized signs of autism.

Of course not all autistic children are the same so one child can have some of the symptoms and another child can have different symptoms altogether. The “symptoms” that I stereotypically previously associated with autism (through the grapevine here and there) were speech delay (tick), lack of eye contact (tick), unsociable (non-tick), non-affectionate (non-tick), flapping arms and/or walking on toes (non-tick). So since there was more non ticks than ticks, and plus the fact that his talking was developing (though as I will explain later not in the right way), I tried hard to convince myself that he did not have the typical symptoms and thus not autistic.

AND we were further reassured by CDC for saying the same thing.

So you can imagine our initial defensiveness when K (Raiyan’s ABA) first mentioned the possibility of Raiyan being autistic. Huh? On what basis?? How can she know after just seeing him for a few minutes?? But CDC said inda jua, what does she know??

Till she explains that autism is a SPECTRUM and that in Raiyan’s case, it may not be as severe and obvious as the type of cases that I previously associated autism with hence it is understandable that it was be missed by us and even by CDC. However, if left the way he was, he can actually get worse because not only will he not be able to communicate well with others, his rituals, his obsessions and his tantrums if left untreated would worsen and become permanent too.

As with typical children, any forms of stimulation for their brain should be intensively done before they turn 6. This is because in those precious early years, a child’s brain is still like a sponge and is still able to be molded by us. Therefore when it comes to autistic children, because their problem is a neurological wiring in the brain which affects the learning process, she advised that treatment and therapy is BEST started as early as possible to sort out the “wiring” as much as we can. Nowadays in the States, they are even diagnosing as early on as 18 months so these children can have a better chance to a major recovery compared with older children. Naturally it gets really difficult to learn new skills and things beyond 6 years old, which explains why those that were diagnosed late and started therapy late did not necessarily have the kind of progress that you are seeing with Raiyan.

What I mean by the thin autism line is that sometimes, the line between an autistic child (especially those on the high functioning end) and a typical child is very thin. For instance when it comes to speech, Raiyan’s was coming along as he was able to say any word we tell him to, he could sing a whole nursery rhyme and he could read books. So to my understanding the boy can talk. It’s just that he wasn’t able to talk WITH you. That was my mistake. I mistook his “self-talk” (talking to himself by reciting something he heard from TV or singing a nursery rhyme to himself etc) as a speech development but it’s really not. It is actually an autistic trait. Another speech symptom is something called echolalia where he would repeat everything I say to him. Again, I mistook this as a speech improvement because he was there talking next to me, but unfortunately, alongside me and NOT together with me. A typical child would be able to answer your question instead of just repeating your question which was what Raiyan kept doing.

I also understand that traits like tantrums, stimming behaviour (paingan), rituals and obsessions can be found in typical children too. The question is at what point does these behavioural patterns change from innocent quirks into actual autism symptoms? My “mummy instinct” answer is that when it just seems too extreme and uncontrollable. I’ve noticed Alisha liking Elmo a lot but she doesn’t need to watch it all the time and when we switch if off, she doesn’t go ballistic. But Raiyan was thinking of his animals all day and night and was not interested in anything else.

But after all that has been said and done, I can still completely understand that a lot of times WE JUST DO NOT KNOW when the line is crossed.

I also get dubious about some people who say there was a kid they know who didn’t speak until he was 5 or 6 and now he’s OKAY. But what is their definition of OKAY? If you are given the chance to really check if he’s totally OKAY by a qualified professional, wouldn’t you want to take that chance? The line is just too thin for you yourself to decide if he’s OKAY, when he has missed such a major milestone like that, for no reason at all. Maybe he seems okay but imagine how much better he would be if the experts did find something there that could be easily treated? Especially when autism is more of a behavioural anomaly rather than a speech one, maybe it’s possible that their speech became “ok” but other aspects of their behavior, especially socially, are still bordering those on the autistic spectrum?

I’m not trying to scare you parents by casting such doubts in your head. I’m just laying out the big picture so you can really decide what you think is best for your child.

For me, if I didn’t meet K, I think Raiyan would have been left the way he is and we’d forever be going down the same road and asking ourselves the same questions over and over again until forever. This is especially since I didn’t know where else to go after being sent away by CDC who said he was fine.

BUT the situation for you is different now. Learning Ladders are giving you the golden opportunity to put those uncertain feelings and suspicions that you may have to rest. If the child psychologist deems your child to be normal then syukur alhamduillah, you can enjoy the rest of your life and child’s life without having to worry anymore. But if you do get a diagnosis that confirmed your suspicions all along, especially at an early age, you can start the treatment and therapy and reap all the benefits from doing so. Raiyan is live evidence that the therapy he’s going through works. Sometimes I still can’t help wishing that we got him diagnosed earlier. But insyaAllah at 4 and a half, he can still benefit a lot from the early diagnosis.

For parents that are losing sleep every other day or week or month over this, just give Learning Ladders a call and set up an appointment with the next child psychologist. Apart from the cost*, it really is a win-win situation.

*I will elaborate more in a later post, but Learning Ladders offer an interest fee loan for the costs of the child psychologist that you can pay back monthly afterwards. Just email me if you are interested to know more details now.

Baby Cinderella

This is 2 year old Raiyan scrubbing the carpet voluntarily after having spilt his juice (that's just his Auntie Wen Wen being cheeky in the background! Ha ha!) . As soon as he spilt a bit, he quickly ran to the kitchen to get a napkin and started scrubbing the stain off on his own.. Kesian ah! Padahal we never taught him to do this!

This goes to show how anal he is about cleanliness from such a young age already!

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!

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

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.

In search of some middle ground

My first poll ended with an interesting result. I am happy to note that more people are of the view that autism is treatable and so there is hope in autistic children improving and hopefully gaining some level of independence one fine day. However 5 people did vote on the fact that what autistic children have is permanent and so the child should be left alone and there serves no purpose to try and treat them (not unlike the quoted opinion I mentioned in my previous post).

I am a “newbie” in this whole autism world and so I am the first to admit that any knowledge I have on autism has been restricted to what I have experienced so far since Raiyan was informally diagnosed in early December. Call me naive but I really believed that all autism parents were on the same side in trying to care for the needs of our children with autism. I just assumed from the start that it is a given that all parents with autistic children would expect and hope that their children can be treated (especially those diagnosed at an early age) and insyaAllah, they can at least be able to live their lives without being completely cared for by their parents. I had more confidence in this after being told of progress stories of Raiyan’s ABA’s patients and of children of other parents that I met within Learning Ladders. I also read Jenny McCarthy’s book which not only inspired me to start this blog, but also gave me much hope and faith that something can be done about Raiyan.

But after googling “cure for autism”, little did I know that there are actually two camps in the world of autism parents or anyone connected to autism, called the “neurodiversity” group and the “neurotypical” group. Those belonging to the “neurodiversity” group are in support of tolerance of autistic people (or any persons regardless of neurological wiring) and mainly consist of autistic adults but also autism parents too. The “neurotypical” group are those persons that are not on the autistic spectrum (eg. MOI and anybody not considered autistic).

To put it in simpler terms, the neurodiversity group thinks that autistic people does not need to change and instead, it is society and the general public that has to change their perception of what is “normal” and start to accept and tolerate autistic people despite them being different. They further believe that the traits and behavioural patterns of people with autism are part of their personalities so to “cure” them is like taking away the very essence that makes them who they are. Thus derives the view that autistic children should be accepted as they are.

Now I have to declare at the outset that I have only read probably 2-3% of the materials touching on this ongoing battle because frankly, there is just too much information out there that it’s practically impossible for anyone to say they have a really “informed” view on this matter. Nevertheless, being a “neurotypical”, I couldn’t help getting upset and sometimes angered by some of the comments made by this “neurodiversity” group. The comments generally circle around the central theme of “to cure or not to cure” but some of the specific points made are to me just plain cruel. Just to list a few:

1. The idea of “curing” autism altogether is wrong and no parent should even consider it. In fact, according to Wikepedia, being called a “curebie” is considered derogatory! For me, I think the word “cure” is still subject to interpretation for the individual parent. The same goes for words like "recover", “improve”, “progress” and “heal”. An individual parent is still entitled to have their own expectations on how much their child can be “cured”, "recovered", “improved” and “healed” as they are the ones best to judge, equipped with the knowledge of their individual child’s own strengths and weaknesses. I for one, especially after seeing the amazing progress Raiyan has made in the last month, dream that he could be “cured” when he is at a point where he is able to communicate easily with people, able to form relationships with others apart from his immediate family and is able to live a relatively independent life without Jeff and me having to care for him at every time of the day. I don’t understand why parents like me should be ridiculed for wanting this. How am I hurting others, depriving others of anything when I want the above for my child? (or as nya orang Brunei, inda jua ku mengacau ko kali ah). Yes, I have my fears that Raiyan may not achieve what I have dreamt for him but I’m not going to accept defeat NOW, at this early stage... I should still be allowed (and supported!) to strive to achieve this dream, one day at a time and taking any little achievement as a small step towards that recovery.
2. Autism cannot be cured and we “curebies” are merely giving false hopes to other autism parents. Yes, I understand that there are autistic adults and older autistic children who still have their autistic symptoms despite having gone through some treatment. Nevertheless, isn’t it logical to think and believe that research into treatment has improved now compared to 10-20 years ago when these autistic adults and older autistic children were younger? After all, people only started to take notice of autism because of its alarming raising rates in the last decade. According to Holly Robinson Peete during her interview with Oprah, when her son was diagnosed in 1999, 1 in 5000 children was autistic. Now, it is 1 in 120 children. The benefits of early intervention may also not have been apparent and is STILL not well known in Brunei. Hence, I would STILL prefer to give the benefit of the doubt to the ABA therapy treatment that Raiyan is using (which is a relatively new form of treatment for autism) and my optimism is further fuelled by the fact that Raiyan started treatment at 4 as opposed to many of the older autistic children that may have started therapy at a later age.
   Furthermore, autism is a spectrum and not all autistic children are the same. It is a known fact that some progress better than others. But how do you know for sure which “type” your child is and to what extent they can progress without trying out some form of treatment first right?
3. Not everyone can afford the treatment promoted by the “curebies”. Jenny McCarthy was attacked by an autism mum blogger just because Jenny said “she is just like any other autism mother” whilst at the same time, spent $5000 on a heart monitor, hired a private jet to urgently get to her sick son and spent and is still spending thousands and thousands of dollars for hours of treatment, all of these things granted, are not exactly something a lot of your everyday autism mothers can do. But again, I ask why must there be hostility and mockery against Jenny as a fellow autism mother who I see is just trying to bring more awareness on autism. I really don’t think that by claiming she is “just like any other mother with an autistic child”, Jenny expects other mothers do exactly what she does or spends as much as she does. I’m sure she meant it in the general sense that as a mother, she will do ANYTHING SHE CAN in trying to care for her child, just like other mothers will do ANYTHING THEY CAN AND TO THEIR ABILITIES in trying to care for their child. Furthermore she is not just telling her story to the general public , she is trying to direct the attention to the medical authorities as well so that Evan’s progress story can help convince them on the need for more in-depth studies on treatment and that more funding can be provided for parents that can’t afford such treatment.
   I accept the possibility of myself being construed as self absorbed whilst talking about Raiyan’s progress using ABA knowing full well that many other parents aren’t able to do the same for their child. Here I reiterate that by sharing Raiyan’s progress, I aim to:
   a) Lay out more options for treatment (and hopeful ones too) for all parents to decide on, and these may include treatment that before they may not know existed. It is still up to the parent themselves to follow up on it in accordance with their own needs and capabilities.
   b) Highlight to relevant and significant authorities/bodies the great potential of improvement in autistic children early intervention can make so that more expertise and funding can be obtained for this purpose.
4. Autistic adults are saying they do not want to be cured because they are just happy the way they are. I can’t help thinking that for an autistic adult to be able to form this opinion and communicate it to others, they must be high functioning and are those that still able to live a relatively independent life despite still carrying over their autistic symptoms to adulthood. As everyone knows, autism is a spectrum so there are those on the high end, the middle and the low end. Therefore, I don’t think it’s fair for those autistic adults who state the above to claim that they are speaking on behalf of all autistic people as a whole, because there are unfortunately those that are in the low end who I can imagine would crave to be “cured” (again to be interpreted subjectively!) if they know they have any remote chance for that to happen.
5. Patients of down syndrome and cerebral palsy and/or their parents do not ask for a cure so why should we ask for one for autism. I can’t speak for these parents as I have NO IDEA what it must be like to have a child with these disabilities and I don’t know what types of treatment there are available for their children. Again, all I know is if I hear of progress stories of other autistic children where they are able to communicate better, improve their social skills, reduce their ritualistic tendencies and tantrums, I’m going to try it out for my child. Is it really realistic to believe that parents of down syndrome or cerebral palsy patients wouldn’t do the same if the same hope is given to them?
6. When we say defeat autism or hate autism, we hate the child. EH? Again, I see this as just another ploy to put down parents like me through the mere manipulation of words and language. I am not an expert in the technical details of linguistics but never in my wildest dreams did I consider myself to hate my child just because I said I want to defeat “autism” or at least minimise it etc. I still see autism as being a condition that is causing Raiyan to have difficulties in communicating, socialising and opening up to new things and naturally I want to at least reduce these autistic tendencies just so I can hope that Raiyan will eventually be able to do these things.
7. We are not happy with the child God gave us. This is probably the most offensive comment of all. These critics also like to point out how parents like me can say that we love our autistic child and how much joy they give us and never have we dreamt of them being traded for a “typical” child and yet here we are trying to “cure” or “change” them. I have in my previous posts mentioned the emotional rollercoaster we go through in raising an autistic child and that whilst there are times I admit to getting really frustrated with the meltdowns and saddened when I see what typical children can do that Raiyan can’t, in the end I still love Raiyan so very insanely much and he still brings me so much joy in so many other ways. In particular, I love how having him make Jeff and me celebrate all the little things he does (that parents of typical children take for granted) which we consider to be our daily dosage of intoxicating pleasure every time it happens. But that doesn’t mean that I still don’t want him to improve or make him better. Even parents with neurotypical children seek to improve their child everyday, so should we autism parents be vilified for wanting to do the same?
   If you can accept your child not being able to communicate his needs to others, not being able to have friends, not being able to go to school, not being able to get a job, continuously giving in to his rituals and throwing violent tantrums when he is unhappy, and if you are completely agreeable to taking care of your child 24/7 for the rest of his life (and that is when you outlive the child), I am on my knees saluting you for your extraordinary endurance, tolerance and patience.
   Then I am ashamed to admit that I am not that extraordinary. I still find it disheartening when Raiyan can’t tell me about his day. My heart breaks when I see him in his class isolating himself from his classmates. I still get conscious of people giving dirty stares when Raiyan is screaming his lungs out in public. I worry constantly about his limited diet. Jeff and I are constantly taking a gamble in trying out new things with him. AND I am constantly terrified of the idea of anyone hurting Raiyan and him not being able to tell me about it. So FORGIVE ME if I still want to “change” certain aspects of my child but that in no way means that I am not happy for who he is.
   And for this konon movement to expect the PUBLIC TO CHANGE THEIR PERCEPTION OF “NORMAL” and accept autistic people as they are, I expect donkey years to pass before the fat chance of that happening in Brunei.

In the end, I am still back at where I started in that I don’t think any of us should be fighting in the first place. Especially taking into account that autism is such a WIDE spectrum and that an autistic child could be completely different from the next, no one autistic child/adult or autism parent can safely speak for another. We should all be working together and supporting each other for the welfare of our children, no matter in what way we choose to do so, rather than waste time attacking and hurting each other.

If any of those "sharp and witty" neurodiversity critics happen to read this post, I am sure they will just see me as a simpleton, completely naive and utterly inexperienced to share any of her views. But reading some of their comments for the last 2 days have caused me to waste sooo much time being angry and insecure of what I am doing with my Raiyan. And because of that, it took my pweshes attention away from him tepulang!

I’m sure if I wanted to look into this issue deeper, I will find even more countless arguments as to who is right and who is wrong. But I just can’t afford the time to do that (I spend hours on this blog alone! Heehee). Instead, I choose to focus my time on doing what I can for Raiyan rather than being involved in silly banter that takes me away from doing what is most important, taking care of my child.

Week 3 Progress

Another week has passed and again, I’m delighted to report that Raiyan is progressing well and at a steady pace. I’ve also almost given up on sitting down with him at a table ala his therapy/tuition style sessions. This is because, no longer than 10 seconds after I bring to him his yellow bag containing the therapy books, flashcards etc that his therapists use throughout the week, he dashes out of the room which leads me to have to chase him and convince him to come back and so on and so on. What I try to do instead is just go through the therapists’ notes on what he has been learning and in particular what he has almost mastered, and reinforce those things in the daily aspects of life. For example, instead of showing a flash card of a scenario and asking him “What is he or she doing?”; I’ll just point to Alisha when she’s having her lunch and ask him “What is Alisha doing”? to which he will answer “She’s eating.” I also prefer this approach of mine because I’m not pressured to spend one or two hours straight, locked up in a room and try to finish a list of tasks within that time. My new approach allows me to “treat” him any time throughout the day and at the same time, familiarise him with real life scenarios instead of just what he learns from only books and flashcards.

Syukur Alhamdulillah, Raiyan’s achievements since the last progress post are:

1) His nouns, verbs and prepositions vocabulary is great! To the extent that I can easily ask him to get (verb) the remote control (noun) under (a preposition) the sofa (another noun). Yes, yes I’m also taking the opportunity to “ulun” my son when I’m too lazy to do that myself.. but I’m also teaching him OKAY!

2) His pretend play is improving. On Wednesday, he came back from school where he made a paper umbrella during arts and crafts and he was walking around the house with the umbrella above his head saying it’s raining. Then he even wrapped himself with a mini blanket saying that it was a “raincoat”! (This was all well except for the times when he kept crying in frustrations when the blanket wouldn’t stay on... sigh.. nantitah I’ll sew on buttons on the blanket..).

3) He’s better at understanding and expressing his feelings more. We were watching an episode of Mr Bean where he had to mind the baby and Raiyan looked incredibly worried when he realised that the baby’s mommy wasn't around. So he kept asking “Where is baby’s mommy?” with his face verging on streaming with tears and I’d say “I don’t know where baby’s mommy is Raiyan. How are you feeling?” and he answered “sad..”. Okay, the excited clapping by Jeff and me along with cries of joy was quite inappropriate given the circumstances but we just couldn’t help celebrating over the fact that Raiyan telling us he was sad!! WOOHOO!!

4) He’s beginning to learn to label things into categories, such as a piano is an instrument, a car is transportation, a square is a shape etc. This has been a favourite game we play in the car where I would call out things we see around us and ask him what category that item belongs in. Sometimes I enjoy playing this game a bit too much when I’m driving that I’m afraid to admit I’ve had some close calls on the road because of it!

5) He’s generally smiley and friendly now when greeting people and would almost always say hello or hi back (though they still must be people he’s familiar with so apologies in advance to any of you readers who happen to bump into us one day and meet Raiyan for the first time and decide to say hi..). One time when I sent him to class, two of his class mates said “Hi Raiyan” and he said “Hi Rifat” and “Hi Dan”back. My heart was jumping for joy when I saw that but my joy was ebbed a tad when I heard the same boys being called “Leroy” and “Aiman” by the teacher. Errmm...no wonder they looked a bit puzzled when Raiyan said hi back heehee..

Of course, the tantrums are still there and some of them are still quite nerve wrecking but we are all coping with them the best way we can. Just to share, I tried giving him cod liver oil more than a week ago based on a tip from a fellow autism mother as she found it had calming effects on her angel. Alas it did not have the same effect on Raiyan. In the beginning it didn’t really click to us that it had anything to do with the cod liver oil but all of us at home (including the help) did notice that his tantrums were a whole pitch higher that week. Once we suspected what it was, we stopped giving it to him and sure enough, the intensity of his tantrum definitely reduced. This clearly proves that a tip is not one size for all but hey, that’s not going stop me from trying! At least now, I can strike cod liver oil out of the list of possible remedies right?

He’s still asking for his animals now and then and we do give in to him at times and especially at times when we think he deserves to have them. There are still the cries when we take them away but definitely not as prolonged and fanatical as it used to be a month ago.

On a side note, I am also very happy to report that someone close to me who has always suspected that her daughter has some autistic traits has decided to go ahead and get an assessment done. We had a really meaningful chat this afternoon, especially about the challenges parents have in this country in not being able to properly diagnose our children that we suspect has autism and are equally dismayed at the reluctance of the authorities in trying to seek or fund treatment for these children. Apparently one has even been quoted to say that there’s nothing that can be done or need to be done because these autistic children wouldn’t amount to anything anyway. I’m not one to quickly trust a story based on hearsay alone but speaking from my own experience I wouldn’t at all be surprised that that may have been said. And that’s really, really, really, really depressing to hear.

As you readers must gather by now from reading about Raiyan, autistic children are NOT non-treatable and insyaAllah they WILL BE SOMEBODY one day. What was quoted above is just the unfortunate stereotype perception people have on autistic children that I and along with other fellow autism parents out there are trying very hard to break because not only are autistic children NOT NOTHING, they are in fact much more special than you can ever imagine.