The Journey Continues

At the dawn of the New Year, I was at one point contemplating changing the direction of this blog to focus more on just the therapy, the society and our relationship with the school and not so much on personal stories about Raiyan (you know entries like “Bossy Boy” and “Chubby”). Instead I wanted to share such stories in the “Pweshes Diaries” blog which just generally talks about my children’s antics.

It was really difficult to put into words how I felt and especially doing so with an attempt to avoid offending anyone. But simply put, Raiyan is such a different boy now after one year of therapy and undoubtedly one who possesses a distinctively genuine personality that on some level, I find it unfair, for him and for others; for me to be writing about him purely in the context of his autism within this autism blog.

Don’t get me wrong, I still believe Raiyan is autistic and that will always stay with him but if I haven’t made myself clear before, I am at the point where I see Raiyan being so much more and in terms of the autism, I see it more as a gift as opposed to a burden. Though I feel like this now, I am by no means discounting or dismissing the difficulties autism has caused for Raiyan in the past; and for other children and their families who are still facing them. Alhamdulillah I am eternally grateful that our family are blessed with where we are now and to also be at a place where we have adapted to the autism by constantly making the effort to talk to Raiyan (and everyone in the house for that matter) in a certain ABA way-clear, broken down, direct and mutually understanding.

Of course there are difficulties still present, such as the lack of social cues, inability to fully express himself and the tendency towards utter egocentricity. These are admittedly ongoing challenges we have to deal with but when put into perspective with past challenges like complete lack of communication, obsessions, rigid routines, resistance to new things and of course the notorious tantrums, what our family has to deal with now is definitely not as nerve-wrecking as it was before. InsyaAllah it does seem like Raiyan is able to successfully manage these challenges seeing how they have not surfaced in a very long time. What we see now is him truly blossoming and quickly catching up with his peers that many who meet him for the first time thinks he’s indistinguishable. Now he independently comes up with the cutest quips that I, just like any other parent, loves to share on this blog just because it’s something coming out of my child as opposed to it being something related to autism.

The situation in Brunei is still very tricky in that not only is awareness on autism limited, the notion that these children can learn to overcome their autistic traits is practically unheard of. When I personally tell people that Raiyan is autistic, they immediately think they have to feel sorry for me. Though I completely do not blame them to feel this way as I know there are many other families out there who still has to constantly face the daunting side of autism in their children, I still can’t help feeling slightly cheated upon receiving the pitiful looks because if they were to really know Raiyan NOW, they would be surprised to see that we actually don’t really deserve the sympathy. This is especially so if you were to see his incredible report card of last term! But nevertheless, I accept that a lot of autism families in Brunei are still facing uphill struggles on a daily basis and urgent attention from the authorities is seriously needed. That’s why I was scared I might then be transmitting mixed messages when I’m talking about Raiyan in such an amazingly positive way.

So what do I do? Seeing how there is still much awareness needed for autism and its diagnosis, prognosis and treatment, do I want to continue to write about Raiyan that makes him seemingly “normal”? I mean it’s logical for one to conclude from reading the blog that autism is not such a big deal seeing how Raiyan is coping with it so well. I reiterate, I really do not want to discount the challenges other families that I know, who still needs to be paid more attention and as horrible it is to accept, it is easier to obtain this attention when a disturbing or depressing image is portrayed.

At the same time, I don’t want EVERYTHING Raiyan does to be construed as an autistic “thing” especially seeing how the complete attachment of that “label” has proved to be such a unnecessary nuisance for him. I mean some of the adorable things he does and say can very well be separate and independent from the autism. That’s why I thought I should share “those” stories on a non-autism blog rather than here. With this in mind, I was almost convinced that this is the way I should proceed with the blog.

However, the negative consequences of autism in Brunei still being perceived as something depressing and "not wished upon anyone" lingers on in my mind. I know of parents who insist to stay in denial about their child’s condition even though the symptoms are obvious and not getting any better. I know of parents who choose to not take their children out because they can’t bear the attention they draw when being out in public. I know of parents who doesn’t even talk about their child nor share stories about them believing it’s taboo to do so. I also know of parents who proudly talk about their child’s conditions and take him out in public even though he is still non-verbal and relatively hard to control, only to be shot patronizing looks from others. This is when I realized that if I stop talking about Raiyan as he is, I will continue to feed into this unfortunate stereotype and this I fear may lead to MORE parents choosing to be in denial about their child that they may potentially miss the boat for early intervention. Far worse, I fear this may lead to MORE parents feeling alienated from the rest of society resulting in built up resentment and frustration simply because they had to suppress or feel the need to deny something that makes up such an intrinsic part of their lives.

So I decided to maintain the blog as it is. I have to trust that others remember that autism is a spectrum and it would seem that Raiyan is on the mild end and there are others on the spectrum who still require more urgent and close attention. I also have to trust that others FULLY read this blog to see that autism IS still a big deal and Raiyan would not be where he is had he not received the appropriate treatment this past year.

I know for now Raiyan may not speak for the majority of autistic children in Brunei and I don’t expect for people to think he that he is. But that’s not going to stop me from continuing to hope to reach out to other parents on the spectrum who does feel they can relate or even aspire to want to relate. In line with my pweshes philosophy, I can only continue to hope and pray that in time, Raiyan and other children like him can not only help to inspire other families to accept the autism and work on it as early on as possible and insyaAllah along the way they too will be blessed with the opportunity to discover its beautiful side that I see today. And once you’re there, I challenge you to not want to share it too. :D

Ignoyed no more

I got left some interesting comments from my earlier post about the abovementioned “emotion” and after much reflection and consideration, I have come to realize that it is in fact unfair for me to expect others to even watch the shows let alone give any feedback on them.

It’s all down to a simple matter of fact that if people are not interested in something, they just aren’t. That’s not necessarily a bad thing because when you really think about it, everyone is entitled to their own opinions, likes, dislikes and of course interests. And in this day and age of there being a million and one things to do in life, one’s interests have to be prioritized and restricted due to time constraints.

When a close Learning Ladders friend told me recently “if it’s not their problem, then they just wouldn’t bother to know”, I was at first disheartened with such a notion because it just sounds so selfish, especially since it will make spreading autism awareness so much harder.

But now the more I think about it, it’s not selfish at all, it’s reality.

All along, I somehow still thought that my friends do have some level of interest with Raiyan and his therapy but I realized that this blog has been around for almost a year and if during all that time, they haven’t mentioned any of my posts to me, that just naturally mean that they don’t read it. And if they don’t read it, of course coupled together with the reason of not having enough time to do so, it just also simply means that they are not interested to know. It is just not something they feel strongly enough to take time out to learn more of and especially since autism is literally so complicated, it would seem like such an enormous feat to start learning and understanding it so they don’t bother to even start. But instead of feeling hurt about this actuality, I’ve realized and accepted that IT”S OKAY for them to be like that because you just can’t force something that’s just not there.

Then it made me think of how interested or even aware I am of other people’s problems. I’m ashamed to admit that actually I have no idea and then I thought even if I am aware, will I really make so much effort to learn more about them when their problem doesn’t concern me? Probably not.. I can see myself coming up with my own excuses of being too busy with my life and my problems too when in fact I could be really hurting that person who expected me to show more interest. So I can see how equally guilty of carelessness I can be too. For a really simplistic example, it’s not like I’m making so much effort in learning about forex or cancer or charity causes for famine in Africa am I? Because it doesn’t affect me, I realize I’m not bothered to learn about them- hence if I consider others to be selfish for acting that way, then that clearly makes me selfish too.

I do believe that self-absorption is slowly becoming the norm and people in general are learning to live completely independent of each other. But that’s not to say that we should just let that carry on. I still believe in the idea of “checking in” with each other once in a while, which I sincerely try to do as best as I can. But I’m sure it’s still not enough. I should at the same time believe that others are doing the best they can to check in but taking into account their own limitations. This is why I value this blog and the internet in general so very much. It’s an ideal way for us to “check in” with each other and see what each other gets up to without having to make the extra time and effort to meet in person or pick up the phone to exchange all the information. Even though admittedly I feel a bit disappointed that some of my friends are not checking in with me through the blog, I’ve realized that I’ve not made much effort in checking in with them in their facebook pages too (how I wish all of them have blogs cause facebook is just too slow to open!). I promise I will try to do that more of that.

So from now, I unleash all these preconceived thoughts about expecting my friends to ask me about Raiyan and the therapy and the society because I have accepted that it is just not something they can see or even begin to understand. If they do ask me, I would be delighted to share but if they don’t, it’s completely okay by me because they do show their interest in my life in so many other ways. At the same time, to feel less like a hypocrite, I will literally check in with them more too.. maybe there’s something going on I don’t know about.. (I hope and pray everyone is fine though!).

Also, I shall not forget those out there who have shown genuine interest, to name a few, like Nisa, Suvi, Fauzi, Muizzo, May, Bev, ciliqueen and more recently Mala, Haryati, Fidah and all the lovely anonymous ones who leave wonderful comments even though as far as I know, I don’t think their lives are directly connected to autism. To restore my faith and determination in disseminating information on autism and to help spread autism awareness I shall always keep in mind the fact that there are still those like them who really do want to learn more and I should really focus my energy in educating them rather than trying to forcefully educate those who are just not interested! But that’s not to say I’m going to completely stop talking about it to the disinterested ones, it’s just at the moment, things are still wishy washy to talk of. Perhaps once the Learning Ladders centre is open, I can invite them for a visit so they can see the therapy themselves. Or perhaps once Learning Ladders is more established and prominent insyaAllah, then it’s easier for them to take notice. Who knows right? All I know is, for me to continue on with this “peaceful” journey of mine, I can’t afford to harbor any resentment, however miniscule, towards anyone, especially my dear friends who I honestly love and care about and I’m sure feel the same way about me too.

Alhamdulillah for this breakthrough!

Ignoyed

Ok so we had our video shown on national TV and we were interviewed on the morning talk show – both of these I had informed beforehand on this blog and just in case the message didn’t get across, I even smsed a number of people I consider friends that I thought were close enough to care about this side of my life to go and watch it.

Unfortunately, rather than moving a step closer in trying to get these friends to understand this part of my life, I have been going borderline crazy going round in circles wondering why none of them (except 2) gave any feedback on the two shows and Learning Ladders efforts in general. In fact, most of them didn’t even acknowledge the sms I sent. And when I did get a response, it was “were you nervous?” “oh I saw you on tv” and “I saw your brown baju and immediately recognized it to be you.”

One side of me does really think that other people have their busy lives and I really don’t blame them if they didn’t watch it or if they did, maybe it was just in the background and they didn’t really listen. In that sense, I am far from a narcissist who is insisting her friends watch the shows just for the sake of ME appearing on TV. The only reason I wanted my friends to watch the show is because all this time already, they have hardly showed interest in me raising an autistic child and my efforts with the society. I just laid that down to lack of understanding which again, I completely do not blame them for because autism is indeed such a complicated issue. Which was exactly the reason why I badly wanted for them to watch the video and the interview because it is there that they can begin to understand what autism is because once in a while, I would really love to comfortably talk to them about it. Sometimes it does hurt to know that this gigantic part of my life, I really can’t share with my close friends and instead here I am sharing it with the world. I wonder if it sounds absurd to some or actually, as I am slowly beginning to accept, is this merely part of “real life”.

I think what bothers me the most is just not knowing why .. I absolutely have no idea why they don’t talk to me about Raiyan, about the society, even the blog.. Do they think I’m just overreacting and that Raiyan is nothing for cause of concern? Are they really so scared of it that the less they know, the better? Am I expecting too much just for a simple “yay! Good job!” ? (which I incidentally got from one galpal-thanks Za and I know you read this blog too.. I appreciate that so much you cannot even imagine!).

All I know is, it is another struggle that I have to go through. To put up a front and to act like I don’t care that they don’t seem to care because in the end, I still believe they are good and dear friends but for whatever reason, I just can’t seem to reach out to them about this. I have to accept that this part of my life just stays with me (and the readers of this blog haha!) and to stop having any expectations anymore for my friends to show interest in it. To give them the benefit of the doubt, I really do believe that there is no ill reason for their lack of concern. They, along with everyone else are really busy with their lives and I’m sure I have been guilty in the past of being careless too.

As you get older, it is so strange how things just turn out to be something that is beyond your control and you just have to go with the flow and accept it. I never expected to be uncomfortable and conscious talking about Raiyan and the society to my own friends but if it’s going to happen, there’s nothing I can do But actually it still isn’t so bad as I made it out to be. I still have the best laughs with them and I still talk to them about everything else and I still trust them to be there for me when I really need them. Plus at least they don't see Raiyan any differently from any other child. And deep down, I still have hopes that one fine day, they will come round and I would be able to talk about this to them all the time without feeling awkward. That time is just not now, I guess.. but wwhhhhyy?? Sob sob..

PS. The title is an emotion invented by Raiyan- a mixture of “ignored and annoyed”. So if you ask him, Raiyan how do you feel when Alisha plays with your toys and you don’t want her to? He’ll say “ignoyed!”

Awareness conscience

I decided to place my Pweshes Philosophy on autism on the main blog page as opposed to a link (which I have noticed have hardly been visited lately) because my sporadic "awareness conscience" has been creeping up again lately.

For those who don't know, and this is especially for overseas readers, "autism awareness" in Brunei is only in the sense that some have heard of the term and when they have, it's usually associated with something depressing and sad. Even now, I still find people getting uncomfortable when I start discussing Raiyan and his condition when I'm trying my very best to discuss it in the most positive light.

Naturally, I still think there is a serious lack of autism awareness over here and this is worrying because without an informed understanding, there are parents out there who still choose to be in denial over their child’s potential condition as they are so scared to just hear the words “your child has autism/is autistic.” Because of that, they decide to wait and wait for their child to start talking and for their child to outgrow their tantrums and quirky behaviours, sometimes until as late as they are 6 or 7. It is a scientific fact that early intervention can help these children so it is unfortunate that just because of the fear these parents have, their children may have possibly missed the boat in trying to get the benefits of the early intervention.

I badly want parents to know that autism is a condition that is “part” of the child and just because you hear someone telling you that your child has autism/is autistic, that doesn’t mean that he or she is now somebody different from who you’ve been cradling and looking after from the day he or she is born. It is a “condition” that can be worked upon through the appropriate education and behavioural therapies. I am not talking about giving the child drugs or any other remedy that will make him better overnight. What Raiyan is fortunate to have is an educational programme prepared by the most amazing behavioural consultant and therapists for him to learn to cope better in this world. Through this programme, we also get to witness how incredibly smart Raiyan is too. And yet, he is still autistic but far from anything depressing and sad, that autistic part of him can at the same time be humbling and a joy to observe too.

And for the public and society in general, please, QUIT thinking that autism is a label for a child and that is something that defines the child for who he or she is because I repeat, it is a MEDICAL DIAGNOSIS and condition. Individuals with autism have their own personalities, their own likes and dislikes, their own feelings and there are millions of autistic adults out there who are thriving in this world so again, parents do not need to be so scared of receiving that diagnosis. What is important in these early stages is to try and work on the disabilities as much as the child can handle and of course within our means and just hope and pray for the best.

I’m sorry, but at this time of better awareness and understanding in other parts of the world, there is just no excuse to not do anything.

A Tidal Wave Amidst the Peace

WARNING: FRUSTRATED MAMA RANT AHEAD.

Today has been a pretty low day for me.

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

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

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

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

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

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

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

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

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

ABA Checklist Continued

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

Wat U lookin' At?

Our family plowed ourselves through the weekend traffic jam in Gadong in an attempt to enjoy some quality time together at the Mall (Yes, I can see how paradoxical that statement may sound, especially having an autistic child in tow.. Why the Mall of all places??)

Well, for starters, we haven't been there in a loooooooonnnngg time. For the obvious reason that there always seems to be some kind of computer expo or travel expo or Brunei products expo on, which foreseeably draws a ridiculously large amount of shopaholic Bruneians to fill up every inch of space available! Evidently, it's just too intimidating to have our autistic angel be immersed in that level of chaos. It hasn't stopped us in previous times however so it's not like Raiyan has never been to the Mall or any other chaotic place for that matter. It's just that with all our energy thrown into the therapy, along with taking care of a curious 21 month old and a completely dependent 5 month old, we have chosen to give such outings a back seat for now.

But yesterday, and especially after having returned from another overseas trip where such talked of crowds are considered normal, Jeff and I just had a mutual craving to be part of that crowd again. We angan-angan to take the kids to the bookstore, have some desserts and milkshakes at Swensens, browse for baby clothes at Guess and Just Kidding, pick up some bathroom essentials from the Body Shop and perhaps get a DVD or 2 from AV Heaven. At the same time, we surprisingly but perhaps foolishly even had the bravado to handle all 3 kids alone by letting the maids go off and have their leisurely afternoon at the Mall too.

Oh but it all remained an elusive dream my friends.... After only having set foot into Best Eastern, Raiyan went straight to the children's section in active search of an animal book. We let them spend about half an hour in the shop just to enjoy what they can read there (I just bought them a bunch of books from Singapore anyway, so I wasn't going to indulge them more!) and then put the books back and move on. Of course, Raiyan resisted. He had in his hand a book on how to make origami farm animals that cost $7.80.. Even if I wanted to buy him a book, this would be one of the last books I'd get! Not only are we trying to stray him away from his obsession with animals, the book didn't even have any story to tell which would have helped him with his imagination and emotions! So it was a definite NO to Raiyan!

So yes, the tears and the whining ensued..Though I have to say that it wasn't half as bad as how it used to be. There were no shouts and screams and no rolling on the floor alhamdulillah. But yet, he was still loud enough and emotionally distressed to bring attention to himself. And again, that's when I nearly lost it! I tried REALLY hard to not take it out on Raiyan because I had to constantly remind myself that his reaction now is BY FAR SO MUCH better than how his old tantrums used to be.

But it took every energy in me to not blow up at the groups of people who STILL had to stop, look and even turn around to stare at poor Raiyan.And we're not talking about just "innocent" stares emanating from pure curious concerns. These are the stop, look, still look, shake head and whisper to spouse/friend with a judgmental expression kinda stare!

I don't get it! It's a just a small child crying.. Have they never seen a child cry before? Do the children in their lives NOT cry? Are they expecting to see a psycho mother physically abuse her child in front of everyone to see? It so reminds me of the mentality where people slow down on the road just to kaypoh catch a glimpse at an accident that doesn't concern them at all. Unless it looks like a tragic one that sadly, I personally can't help looking too OR if it involves someone you know, I don't see any reason why everyone should not just look away after a second and DRIVE ON.

Which was precisely how I felt with all those equally kaypoh people staring at Raiyan. IF he was screaming out in pain or rolling around on the floor or doing whatever extraordinary things other children don't normally do, I can forgive them to feel the need to stop and stare. But he WASN"T. He was just crying out for an animal book, over and over again. No big deal. If I knew it was a big deal, I would have started charging people to watch.

Which is why I would probably need to get this t-shirt before our family ever make our way back to the Mall again:

Anyone interested, you can get this t-shirt at autismbites and you would be helping out the foundation at the same time!

What not to say

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

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

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

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

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

Raiyan and his "Speking Speking"

There is no hiding the fact that Raiyan’s therapy sessions are completely conducted in English. And as you can see from the progress stories that I tell, all of his speech improvements are manifested only in the English language. To be completely honest, he probably knows at most 4 malay words/terms that he often uses, which are “tukar baju”, “mandi”, “susu” and “jalan”. Clearly, these 4 words are the MOST frequently used throughout him growing up which probably explains how they have become the rare words that Raiyan got on his own even before he started therapy. So instilled are these words in him that he STILL uses them mixed with English words like “I want mandi”or “time to jalan” and of course he’ll say these malay words in an orang puteh accent..

But apart from these words, Raiyan’s vocabulary is completely in English. And hence if we want any level of communication with Raiyan, we have to do it in the way that he understands and for now, it is only through speaking in English (yes, yes, apart from bath time, changing clothes time, milk time and time to go out!).

So please don’t be offended if you happen to ask Raiyan “apa namamu lai?” or “berapa umurmu?”, (which are clearly such basic questions you would think any child above the age of 2 will be able to answer), and he will either look at you blankly or just plainly ignore you. Instead, I suggest you try “what’s your name?” and “how old are you?”- THEN he’ll be able to tell you uniformly “Raiyan” and “4”.

And please don’t pass judgment when you see me in Supa Save for instance, clearly dressed as a Malay woman which I am, but only talking to Raiyan in English AND in a heightened voice (to help get his attention). I’m sure I seem “lacis-lacis” to some people who don’t know any better and I wouldn’t be surprised if they think I’m belabih or mengada-mengada when they hear me (or incidentally any of his caregivers) say things like “Raiyan, do you want the chocolate milk or the banana milk?”; “How many bottles do you want?”; “We have to wait for our turn Raiyan”; “First we pay then you can drink your milk okay”; and the most famous phrase ABA promotes, “Good Job Raiyan!”

This brings us to a really funny incident last week when we brought Raiyan to see the paeditrician. While waiting outside, Raiyan was playing at the play area where there was also another [malay] girl playing, who was probably a year older than Raiyan at most. Raiyan actually has always been a friendly person. The problem is that he is not able to sustain the interest of other children for long since he’s not able to converse with them properly. With the successes of the therapy, he has started to be able to do so with his ISB classmates since they generally speak in English at school.

So there was Raiyan trying to strike up an interplay with the girl at the play area by telling her to go down the slide whilst he was waiting for his turn “Come on, go, you can do it, go down the slide…” and whilst requesting her to join him at the see saw “Come on, first you go down the slide, then you sit here in front of me, okay?”. Naturally, I was so elated to be seeing and hearing what was happening before me despite the girl not going over to do what Raiyan told her to do which I just concluded as typical shyness or stubbornness normally acted out by children that age.

Until the point when the girl’s mother came and sat next to me to inform me that her daughter actually doesn’t understand what Raiyan was saying. She then asked if Raiyan only speaks English to which I sheepishly confirmed. Then she asked if his father was a foreigner (since I was already speaking to her in Brunei Malay) to which I didn’t have a choice but say no since Jeff was right next to me complete in his army attire! Looking confused she just said “so kamu dua melayu tapi kamu cakap sama anak kamu dalam inggeris saja?”

Errrmmm.. yeeaahh… MALU!

Author's Note

Due to a sudden influx of negative accusations of me on a personal level that are completely irrelevant to the primary objective of this blog, I have chosen to not approve comments of such character, not because I cannot handle the criticism but it's just too heartbreaking to have such horrible words shared on the same page as the stories of my beautiful son.

This blog was mainly created to share Raiyan's stories, past, present and insyaAllah a better future so that we can give the message out to other autism parents that there is hope out there for their children. I admit that along the way, telling his story has required me to also share some factual events that have happened which has caused Raiyan to be where he is now. I completely apologise if persons that are affected by my sharing of these factual events feel like they have been unfairly criticized by me. Please believe me that it was never my intention to undermine you and your organisation and if you care to read my post entries more closely, I can safely say that you can see I tried very hard to be professional in all of the 5 (out of 42) posts where you and your organisation are mentioned. If you still think otherwise, then I duly invite you to highlight to me exactly where I have shown such lack of discreetness so that I know what exactly I need to work on.

As I said, this blog is about Raiyan's journey with autism and it is my dream that one day he is able to read it and look back and see how far he has come from. With that I seek your understanding as to why it is too important for me as his mother, to preserve the records of his journey in the most positive light and more importantly to not let it be tarnished by side discussions on patriotism and politics that have nothing to do with Raiyan's condition and progress.

It has greatly saddened me that this sudden influx of negative and irrelevant comments now runs the risk of diverting precious attention away from reading heartwarming stories of our Raiyan.

I still more than welcome comments but I request that even if it is on a negative point, please keep it on a professional level and most of all make sure they are constructive comments that will ultimately help Raiyan in his journey.

I am grateful to my dear sister for reminding me of essentially why I keep this blog and the fact that even though I do want to give everyone their fair chance to say something, I nevertheless am still in control as to what should be displayed in maintaining the basic principle of what this blog is about. I recommend you read her most eloquent ways in explaining and arguably to some, justifying, this need to do so at this post of hers.

Thank you and Wassalam.

Update: It has come to light (man sometimes I really am that slow!) that the attack towards me and Learning Ladders was not necessarily because I personally have provoked the issue in my posts and comments but more because I had allowed one provocative comment to pass through, specifically the comment made by EG M from Newcastle, which I have now deleted. I understand now how the comment have angered so many and I sincerely apologise for the momentary lapse of judgment on my part to still have published that post despite the negativity it was brewing up. To EG M, we really did appreciate some of the points made in your comment about the inadequacies that exist in Brunei when dealing with autism. Nevertheless I have to stay true to my point in not allowing extreme negativities in this blog about Raiyan and whilst admittedly you made some valid points worthy of further investigation by the appropriate authorities, I only wished you delivered them in a manner that didn't provoke so many and opened this floodgate of angry rants on irrelevant things that I really needed to put a stop to.

Raising Awareness v Anonymity

A very interesting debate I had in my comments box that I think it's worth for everyone to read if they haven't had the chance to...

Dr V said...

Firstly, I have to applaud you for being brave and honest about your son’s condition. Being a psychologist from Cardiff, I’ve met a lot of mothers like you. Most of them even suggested that autism is not unusual. I agree that you need to vent out your frustrations in order to cope with likelihood of depression and leveling how you really feel. Nevertheless, have you thoroughly considered the repercussion of your actions, which is remaining anonymous at least for the sake of your son.

After reading many of your posts, I would say this is a ‘classic bereavement and denial stage’ and there appears to be a lot of anger and pent up frustrations on your part especially having to deal with such huge diagnosis such as autism and limited resources in your country. Have you ever considered attending therapy yourself to help you cope better with the overwhelming situation. In my opinion, his anonymity is vital in his case, to protect him from future social prejudice and labeling, which could be fatal to your son’s personal progress in the future.

If nothing else, this should teach you patience with what you have no control on and cannot change.All the best to Raiyan.
February 26, 2008 11:27 AM

Pweshes Mama said...
Hi and thank you for your comment.

I am sorry to hear that after reading my posts, you find me to be a mother in classic bereavement and denial stage.

Yes, there are times I may sound frustrated but it has NEVER been because of my son's diagnosis. I'm not sure what your view is on autism, but like a lot of the mothers you have met, I do not view it as something "unusual" and to be shielded from. It is something that has rapidly increased in occurrence in recent years and without a known cause and cure, will only continue to increase. But unfortunately in my small country of Brunei (where almost everyone knows each other anyway), there is still much ignorance of it, whether it's from the public, the medical authorities and the education authorities which unfortunately leads to these autistic children being shunned, ignored and judged upon.

I would have thought that by proudly sharing stories of my son will help change the mindset of these ignorant people and help society to start viewing autistic children in a positive manner.

I cannot prevent social prejudice and labeling against my child in any case but at the very least what I can do is try and stop being labeled "autistic" as a bad thing.
February 26, 2008 12:54 PM

autismx2 said...

Dear Dr V,

As the mother of 2 autistic boys, I am proud to say that Pweshes Mama is very brave in writing about her experience as the mother of an autistic boy.

Have you ever been to Brunei? We are a tiny nation where "everybody knows everybody else!"

I am ashamed to say that our society has a very "closed" mindset. Any form of disability is to be "brushed under the carpet" and any disabled child or adult must be hidden away like a "dirty secret".

I am not a psychologist, just another mother who understands what she is going through.I have met mothers who are in "classic bereavment and denial". They do not and are not able to accept their children's condition and as a result their kids( we are talking about kids more than 7 yrs old) being kept at home! I have also met parents who have more than 1 autistic child who go out without bringing their kids out until peoiple actually forget that they have kids!

Pweshes Mama is actually accepting her son's condition and actually helping her son by using the limited resources we have here in Brunei and spending Thousands of dollars every month and all coming out of their own pockets and not even from insurance!!!( Again, AUTISM is not recognised here so insurance DO NOT cover any treatment for Autistic child here).

You as a psychologist should be helping to create MORE Awareness for Autism. Why hide it? Autism is fast rising.....a hidden epidemic.... it SHOULD NOT be HIDDEN anymore.It is people like you who should change your mindset into thinking about ANONYMITY OF AUTISM. Even here in Brunei now whomever I meet they have kids with some form of disability.

Should all these people just keep quite and hide the fact that their kids are disabled?And why should we hide it? Should a visually impaired person hide their blindness? Should a hearing impaired person hide their disability? Should a Downs' syndrome be kept hidden?Every parent should be proud of their children no matter what condition they have.

You should look up Dr Temple Grandin, Steven Spielberg and even Bill Gates. All these people are on the Autism Spectrum. Was their condition FATAL to their personal progress?

With knowledge and awareness comes understanding, acceptance and tolerance.

Keep your sympathies and ignorance to yourself!

We mums of autistic children who write of our experinces and of our autistic children in blogs are PROUD of our children.

Why shouldn't we when diagnosis proves that our kids are SMARTER than you and ten adults put together!!!!
February 26, 2008 5:40 PM

Tiwin said...

Dear Dr V,

Thank you for your comments. With the countless support my sister has been receiving from this blog, it's certainly interesting to read a different perspective on her actions.

I understand the point you are trying to make. Having witnessed everything my sister has been through with Raiyan recently, I never once saw her break down about it. Admittedly, I was worried about how she was handling it too. It IS a big deal to have your child diagnosed with autism, but she never showed any signs of bitterness, of resentment. Yes, she has shown frustration at the limited resources in Brunei, but which person in her position wouldn't? She never played the part of the victim, nor has she ever placed Raiyan as a victim. All she has been dedicated to doing, is making Raiyan better.

I suppose it must be hard to imagine how someone can stay strong and persevere throughout these challenges without it taking a toll on themselves emotionally. But that's my sister for you. She could have felt bad for herself for having a child with autism, but instead she found the positive side of the situation, and embraced the fact that she had been presented with an opportunity to be a better parent. Having Raiyan taught her to be more patient, taught her to be more hands on with her children, taught her to be more appreciative of what her children's achievements and much more.

I have watched her grow so much over the years and what I see now is an incredibly strong and selfless woman, who is completely in love with her son and is doing everything she can to ensure a bright future for him. Her wonderful husband is as equally dedicated as she is, and she has a good support system around her.

As for your belief that exposing Raiyan could potentially harm him, we are of the other school of thought, who believe that we are educating the public by putting his stories out there. Our mission is to change the perception of what children with autism are like.

Raiyan is a ridiculously adorable and lovable little boy, and I believe that having people know Raiyan, putting a face to the issue, makes it more personal to people. And people are more inclined to offer their support and get involved when it's personal. I don't believe this blog would get as much response, had there been no face to the stories.

So thank you for your concerns. But I hope what I've said has shown you that there are some people in this world who can still march on with their head held high, even though the tide seems to be against them. You may call it denial, but we call it hope.
February 26, 2008 8:27 PM

Nisa said...
Dear Dr V,

It's quite interesting the way you would make your diagnosis merely based on reading one's blog site without even having met the person.

I don't feel the need to further endorse Pweshes Mama, simply because she doesn't need it as she is, as I've said before, a very inspirational mother.If you've had the privilege of being a mother yourself, I'm sure you would realise that all mothers are prone to occasional breakdowns. So what should mothers do then in your professional opinion when this happens? It is silly to condemn a mother for expressing her feelings and coping so well with her autistic child.

So as far as Pweshes Mama having 'classic bereavement and denial', I would say that she can readily flick that off now as a logical fallacy made by a doctor - who made that diagnosis based on an illogical relationship. But hey, maybe you can diagnose me based on this post? Further strengthen your credibility, perhaps?

Regards,Nisa
February 26, 2008 9:44 PM

Anonymous said...

Dear,

I agreed with Dr V, as a psychologist myself from Australia, although i am not a child psychologist but i do have background on child psychology as well, i really think your son's anonymity is vital. Think of his future as now people know about him and this would have a bad impact on him. Apart from that, i think you are a brave mother and i must say you have done good. Do keep up the good work, but always remember to look after yourself as well.
February 28, 2008 10:02 PM

Pweshes Mama said...
Dear Anonymous,

As I've mentioned before (and had kindly been backed up by autismx2 and tiwin) I do not see any reason to hide my son simply because I do not view autism in any negative way.

That's why I have been wasting much of my precious time going in circles trying to think of the exact reason why Dr V and you are so adamant to not have people know about him because you think it will have a "bad" impact on him. Can you be more specific please? What kind of "social prejudice" are you talking about? and please, I am dying to know what kind of "bad impact" will he and his progress encounter?

To make things clear, I AM NOT making my son undergo therapy because I expect it will make his "autism" completely go away and turn him into a typical child one day. I am merely trying to help him as much as I can in the difficulties caused by the autism and to raise the chances of him being able to live independently in the future.

Nevertheless, he will ALWAYS have the autism, no matter where he goes and no matter who he meets and that is something I cannot and will not deny, nor will I let him deny it and I will most certainly not let others including those like you, deny it. He is who he is and I accept that autism is a big part of who he is. And I expect others to not only accept that but also understand it.

Not only can't I understand WHY I should hide his identity and the fact that he has autism but also for logical reasons, HOW am I supposed to?? so I don't tell who he is here and so when people first meet him, they MAY not know he is autistic. BUT I can bet that after just a few minutes of meeting him, they will still detect something different about him. Like when he doesn't look at the person when he says hello. Or when he is asked something he may not answer because he doesn't understand the question. Or when he is running from one end of the shop to another repeatedly and doesn't seem to at all tire from it. Or when he rejects someone giving him foods that he is not familiar with.. etc etc

Rather than have these people form their own "judgments" as to why his character may be a bit strange, that's WHY I would want them to KNOW that he has autism. It is important for people to know and understand that he is the way he is because of the autism and NOT because he is spoilt or strange or rude. THOSE are kind of social labeling that I do not want associated with my son because he is simply NOTHING like that. He is an absolutely delightful and amazing little boy who has given everyone who knows him nothing put pure joy and unconditional happiness. Yes I do admit to him being difficult and challenging sometmes but then again, which child isn't?

Furthermore, working on the difficulties is mainly to help HIM! It is NOT in any way just to benefit me or his caregivers and CERTAINLY it is not done so as to spare other people from having to "deal" with him, being a child with autism.

Autism is real, it is alive and without a known cause or cure, is only going to happen more and more. It is high time for people to not only LOOK at it instead of avoiding it and treating it as some kind of plague but more importantly, people really need to start learning and understanding the condition more and not only do I intend to do this through Raiyan and his stories but I shall do it in the most positive way possible as this accurately reflects my true feelings about autism anyway.

As autismx2 said, only through knowledge comes understanding, acceptance and tolerance. So please, Dr V, anonymous supporter of Dr V and if there are any other Dr V supporters out there, before you once again try to make me feel defeated in my quest to spread this knowledge and understanding,enlighten me as to why it is still important for Raiyan to stay hidden when there seems to be so many valid reasons for him to instead, stand up tall and be proud for who he is.
February 29, 2008 9:09 AM

autismx2 said...
Yay! Pweshes Mama.....Well said!!!!

A question to Dr V and "supporter"...do you have an autistic child(s)? Have you ever spend at least a whole day with an autistic child(s)? Have you really studied deeply into AUTISM and Other PDDs?

My 7 yr old autistic son looks very "normal", but he would go out in public or school with one leg of his pants rolled up high just because it is scratchy or slightly wet or stained. No amount of explaining, negotiations or bribery would make him roll down his pants. If I force it on him he would even take off his pants in public and walk around in his undies!

He would not care what anyone would think..... he would not even think that his behaviour would cause stares from other people.....but what is worse is when some passers by or schoolmate would actually say "Haha that child looks silly....so retarded!"

Now that is a labelling that I certainly do not want on my son....EVER!

He is a very high functioning kid who understands every word anyone says but due to his social impairment he would not be able to understand any emotional cues.And also because of this he gets constant bullying in school.

So should I just keep quiet about his "Autism" because I am afraid of the "SOCIAL REPERCUSSIONS" ORWhen I do talk to the school, should I try to keep it ANONYMOUS as to who the "strange child" is that I am telling them about?

Well what do we mothers of autists know.....we'll just listen to EXPERTS like YOU..... and sit back and watch while our children gets bullied, called freak/retarded/alien/stupid by IGNORANT (of AUTISM) people because we are AFRAID of exposing their condition for the sake of their future!!!!

So TELL ME what is their future like if ALL their lives IGNORANT people treat them this way?Think about it Oh! Ye "NORMAL" people!!!

March 1, 2008 9:59 AM

So what else can I along with autismx2, tiwin and nisa have to say?

To people like Dr V and this anonymous supporter, please try and understand our point of view first before you prematurely lay out your advice that you disguise as something constructive or caring.

To obtain more awareness- is it ok to shock sometimes?

I just came across this article in the Brunei Times a few days ago about a relatively shocking awareness campaign in the USA for mental health problems in children including autism which uses the imagery of ransom notes saying autism has the child under captive.

Some autism mothers are obviously not very happy with the campaign because it gives the impression that autism has a criminal or “evil” element to it and is taking over the children as hostages, when in actual fact, well in my opinion at least, it’s never that bleak or tragic. Sure, it is an emotional roller coaster ride for parents to deal with autistic children, but never do we compare having an autistic child to something as terrible as our child being kidnapped. Unsurprisingly, these unhappy mothers have even started a petition to stop the campaign from continuing.

The proponents of the shocking ad campaigns however said that this is the only way we can get people’s attention to start them becoming more aware of what autism really is. I can understand this because sadly, it is human nature to be more initially attracted to or fascinated with something negative rather than the positive. I can also understand why a recent episode of Dr. Phil’s talk show only covered the lows of having an autistic child, so when people see how difficult and sometimes traumatic it is to take care of an autistic child, then perhaps people would sympathise or empathise enough to show more support in helping these autistic children. However, I do not feel this approach is fair for autistic children generally. Apart from the heartbreak and frustrations here and there, autistic children also bring so much contentment to their parents or caregivers. Us parents automatically become so involved in every aspect of our children’s lives that the self-fulfillment for being a parent is just naturally there for us. We never take anything for granted when it comes to autistic children as any achievement, even something as simple as saying “yes” to a question posed to them is worth having a celebratory dinner over.

What I have experienced in Brunei so far though, is that the only way you can reach out to another parent or person to be more aware of this disease, is ONLY if they themselves have an autistic child or they know someone else that has an autistic child. The other parents that I have spoken to unfortunately have given me the impression that: “if it’s not their problem, then they don’t need to know about it.”

I also find some parents who get very uncomfortable when I talk about Raiyan and what he’s going through, like as if I’m telling the most depressing story in the world, when me as his parent, really do not feel that way at all. As I have mentioned earlier, there are many joyful sides to having an autistic child and never have we ever felt that getting the diagnosis was like a death sentence. And yet, whilst talking positively about what Raiyan is going through, all I get from my audience is an awkward silence which leads me to inevitably feel like I have dampened the mood or spoilt the party for everyone.

Therefore, in Brunei, to spread the awareness, I don’t think it makes much difference if you shock or not shock, to tell the positive sides or focus on the negative sides. I just feel like people will only take notice if it is something that they can relate to, and of course to do that, it has to be something that they are going through themselves.

The problem is, 1 in 150 children are diagnosed to be autistic in Brunei and SMARTER quoted that last year more than 50 were newly diagnosed. Overall statistics for the whole world have also shown that numbers have more than doubled in the last decade. So please, don’t even begin to think that this is not your problem. God forbid, (naudzubillah), I am not wishing autism on anybody. I am just being realistic. With the current rising rates, without a cure or lack of proper early intervention, pretty soon, almost all of us will at least KNOW someone autistic. And then you'd be wishing that you have taken more effort to learn about it more earlier.

We as parents of autistic children are not asking for you to take care of our children, or pay for their therapy. We just want you to listen to us with an OPEN mind and help spread the awareness on early intervention because you JUST NEVER KNOW WHO would be needing your help and direction with the knowledge you have.