Week 8 Progress

I've been away on official duty since last Monday so I had to mainly rely on Pweshes Babah to update me on Raiyan's achievements via SMS this past week, some of them I have to admit, had reduced me to joyful tears upon reading about them (though I had to refrain myself when I was checking my messages whilst waiting for my luggage at the airport!!)
  1. Raiyan had a class trip to Bandar on Tuesday and since Pweshes Babah was on leave, he decided to join in and accompany him (well of course to also help control him in any potential meltdowns!). We are happy to report that Raiyan very much enjoyed the trip and was well behaved the whole time despite having to walk long distances around Bandar. Jeff was also delighted to chat with some of his classmates who THEMSELVES volunteered telling him that Raiyan is THEIR friend!! When I think of how difficult it was for Raiyan when he first started school at ISB not only because of his "disabilites" and lack of social skills but also with the added fact that he started school a month later than all the other kids who by then were already familiar with each other, I am so very very proud of what he has achieved and insyaAllah, I have higher hopes now that he will be able to form relationships with others in the future or dare I say it, even a GIRLFRIEND!
  2. Prior to going away, I "briefed" Raiyan about me having to go away for a few days similar to how I have been doing so for the past 4-5 years. Earlier on, I would either receive the typical blank looks because naturally he wouldn't understand what I was talking about but towards the time when he started understanding "some" of what we say to him, he would just cry and cry upon hearing the word "airplane." Furthermore, he would always act slightly "detached" from me everytime I return to him. But this time, I explained to him with slightly more confidence that he is understanding what I say by informing him where I'm going and why I'm going and that I will be back on Saturday etc etc to which he just sat and listened to and replied "okay!". At first I still thought that he wasn't comprehending what I was saying to him, but even after seeing my suitcase and saying bye to me (when I kept saying I'm going to the airport this morning) he really DID seem to be completely OKAY with it and did not cry EVEN once the whole time I was away! He even greeted me at the airport upon my return at 11pm whilst he was half asleep, and groggily said "hi mama" with a smile upon seeing me! :D
  3. Just to further show how OKAY he was with me being away, when Alisha was calling out "mama" and looking for me whilst I was away, Raiyan quickly reassured her by saying "Mama go on aeroplane to New Zeawand and Chiwe. It's ok Ayisha. Babah's here!"

The following adorable incident happened just this night. We have this gate to stop Alisha from climbing the stairs across it and just now, during the time when we were all supposed to go to bed, I discovered that it was broken. Raiyan who was already upstairs, upon hearing me declaring this then said:

"gate is broken?. we need to look at it. Auntie Ida, get the toolbox. we need to fix the gate"

Me: Let's fix it tomorrow Raiyan. It's time to sleep now (whilst going upstairs with Alisha).

But Raiyan carried on going down the stairs and muttering to me:

"No. I gotta look at this now. I get my toolbox."

After a few seconds, Raiyan comes back upstairs saying:

"Ok, we can sleep now. I fix the gate."

I laughingly went downstairs to check what exactly he has done to "fix it" and was so amused to find him merely placing his "engineering tool box" toy set next to the gate!!!! It was soo hilarious that I have to share this story with everyone!

Week 7 Progress

I admit to being quite behind with updating on Raiyan’s progress since it is plainly visible from the count-up counter I have put at the bottom of the page that it has been 8 weeks since Raiyan started his therapy and here I am only updating on week 7.

Nevertheless, I hope you readers have the big picture in mind instead of worrying over the small details. You can imagine how much work it takes in helping “recover” our Raiyan and at the same time, how overwhelming it has been with the amazing progress he is making that it really seems like such an impossible feat to be conveying this to everyone on a consistent basis. After having said that though, I will nonetheless still try my best to share his progress stories to an accurate tee. Why else would I be scurrying to find an internet connection now, when I am on transit at Auckland airport for 5 hours? I just HAVE to publish this NOW before I start slipping into a 2 week delay!

This past week since I have last updated have been absolutely magical! Raiyan is starting to manifest a genuine personality and his imagination has gone beyond OUR own imagination in thinking he’d ever be able to do what he does now.

Before we would be so worried about leaving him alone with his thoughts as that would be when he’ll start regressing to his autistic tendencies such as to non-stop obsess over his animals, to stare into mid-air for hours, to be verbally mute or just talk echolalia talk to himself, to never bother to be engaged with anyone else and would be fine to be a recluse in his corner of the house for the whole day, to react violently when we take something away from him, to watch a dvd on repeat over and over, to not want his dinner, to not want to take a shower etc etc etc.
I still remember how difficult it was for Jeff and me to ever really “relax” because subconsciously, we would always be concerned about leaving Raiyan alone because there is always such an inherent need to “entertain” him. This constant worry was fuelled by the fact that the rest of the day when we are at work, we had absolutely no control over what he was doing as well.

But this past week, we are starting to ease into being comfortable and confident about not having to spend every waking minute with him. Somehow this week, his imagination has somewhat “exploded” out of nowhere (so to speak!). Instead of doing what he usually does over and over again, he is starting to do new and different things all of the time AND all on his own initiative.
For example, he found this long Styrofoam thingies (which we had used to pack things with) and first made it into a bridge for his teddy bear “ted”** to walk on. Then, he took some cellotape (with the help of babah of course) and joined them up and pretended they were antler’s ears! Then, he would sit on a mattress with Ted and use the Styrofoam thingies as rowing paddles!

He would happily be doing all this different things on his own throughout the day. There was hardly a point when Jeff and I got our usual worries about not being directly engaged with him :D

He is also utterly and completely aware of his baby sister and baby brother now and is always playing together with Alisha and calling out for her to play with him. Thankfully, Alisha is ALWAYS ready and keen and so Jeff and I can further comfort ourselves in the fact that Alisha can entertain his brother when we are not so up to it! Ha ha! But they have fun and we have so much fun watching them that we end up joining in too!

Though his language still needs a LOT to be worked on, he is still showing fantastic progress as now he is starting to initiate conversation and there were a few times, when there was an actual 2 way conversation with him !Here is a clear illustration of how his understanding of language is at the moment. He was playing with this flash card which is part of his therapy tools and it got slightly dog-eared because he was carrying it everywhere.

So, I said “Raiyan, look what happened? There is a line on the card!”
Raiyan :“Uh-oh, there’s a line on the card? (this is NOT echolalia because he was repeating it whilst UNDERSTANDING what I was saying and he was saying it in a questioning tone too)
Mama: “Whose card is this?”
Raiyan: “It’s K’s card”
Mama: “Oh, K is going to be angry. Do you want K to be angry?”
Raiyan: “No” (with a “scared” tone to his voice)
Mama: “Then put it back. Where did you find it?”
Raiyan: “In the box in the yellow bag. Where’s the yellow bag?”(he still likes to ask us questions as part of the conversation even though he already knows the answer)
Mama: “You tell me. Where’s the yellow bag?”
Raiyan: “In the exercise room!”
Mama: “Yes, in the exercise room! So, can you please put back the card in the box in the yellow bag in the exercise room please?”
Raiyan: “Okay!”

And he did!!!!!!!! And considering that he was bringing the flash card everywhere he went for the past few hours, that was simply amazing!!

Till next week!
**Ted is his new companion, who we initially thought would develop into an obsession or “item of the week” but it hasn’t! He is still able to walk away from Ted when we tell him 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.

Larry King Update

Apologies for my previous post about the timing of the Larry King Episode on Autism. Rupanya, that was following CNN USA's programming when for CNN Asia the timetable is completely different.

The next showing, following this page will be at 6:00pm later. If you go to the page, it will give the full listings of when the show will be repeated.

Happy Viewing!

When Raiyan Gets Sick

Raiyan has had a fever since Monday evening. We’ve been giving him ibuprofen whenever his temperature gets above 39, which will result in the fever going down but somehow it keeps creeping back up at night.

Raiyan weighs 21kg at 4.5 years, so you can generally consider him to be at a healthy weight. Because he was breastfed for 18 months, Alhamdulillah Raiyan was rarely ill for the first 3 years of his life. But soon after his fussiness with food started, coinciding with him going to school, he then began to get the bug on average, every other month. But even then, it would usually last for only 2-3 days tops.

But around late last year, it started to worsen. The last 2 bouts in particular lasted longer than a week and with the latter, he even had to be admitted to the paediatric ward to get a drip because his fever was just not budging.

As some of you know, autistic children can be very sensitive to touch. So not only was Raiyan already crying when the doctor was checking his chest, ears and throat, he went absolutely berserk when we were trying to insert the drip into his hand. As his mother, I am the first to admit that it was a complete nightmare to watch and I pray I never have to go through that again. There were 5 different adults holding him down for about 10 minutes before the tube was actually in. Even after that, the nurse had to put rolls and rolls of bandage over his wrist and hand to avoid him pulling it off.

The minute we exited the nurses’ room, we were naturally greeted with the shocking stares and glares of others. Yes, he really is that loud. And no, that does not mean he is a spoilt brat who is constantly pampered that he can’t handle a little pain. (Yeah, I can sense what some of you think).

I’m sure I can speak for all parents that whenever possible, we would like to avoid our children getting admitted overnight in the hospital. It’s just so uncomfortable and inconvenient and we would just rather go to our home sweet home and have our child rest there. But for an autistic child, this discomfort is magnified a thousand times over. Raiyan being autistic hates change and has always strongly resisted to a new environment. So you can imagine the agony he was in. For starters he was ill and ALREADY feeling lousy. Then he had the trauma of 5 people touching him and strapping him down to put a plastic tube IN his hand, AND is STAYING in his hand. Then he had to sleep in a strange bed, with different sheets, different pillows and a different blanket. Every time a nurse even so much as breathe next to him, he’ll start having a fit. And pweshes mama couldn’t be with him as I had to go back and nurse 1 month old Addin who was feeding round the clock. Times like these we have no choice but to bring out what else but the ANIMALS!

But even the animals DVDs, books and magazine pweshes babah brought can only entertain him for so long. I think the stress Raiyan was experiencing was so clear and obvious to the doctor that he actually released Raiyan later that night but at the same time making sure Raiyan comes back at 6:00 the next morning to get his next dose of medication!

Alhamdulillah, the drip worked and his fever virtually disappeared the next day.

The reason why Raiyan had to be put on a drip was not because the flu bug was just SO STRONG that he needed the medical intervention. It’s basically just because he didn’t want to drink water. Because of Raiyan’s fussiness with food (and drink), he usually just drinks juice and hardly any water. So whenever he gets sick, his dislike for water becomes his detriment. Yes, orange juice helps but still it wasn’t enough. He still needed to drink lots of lots of water but he was probably just taking in 5% of the volume he was supposed to be drinking. It is times like these that the fussiness caused by the autism really gets in the way because more likely than not, his sickness would probably go away a lot faster if only he would drink water.

So you can understand my anxiety for the last 2 days, checking his temperature repeatedly to ensure that it’s not too high because I really hope and pray he doesn’t have to be admitted like the last time.

Alhamdulillah, it has only been coasting around 39 (whereas before it even went up to 41!) and this morning he seems to be getting his energy back. His therapy has immensely helped Raiyan and us in dealing with him being sick this time round because now we know how to “negotiate” with him to make sure he drinks his water! (Just to remind you, if we wanted to do that before, because of Raiyan’s speech delay, he would not have understood what we are saying to him). Yes, these have included bribes to watch TV, to go to the pet store, to play on the computer etc but we don’t care because it worked! Even though he would drink it from a spoon or a syringe, nevertheless we get the results we want because he would usually finish half a glass of water every time.

I am also thankful for the therapy because he has learnt to express his feelings a bit, like happy, sad, tired, sleepy etc. So for the first time ever, he actually told us that he’s feeling sick and sleepy. And when he was feeling better, he told us he was feeling happy. You don’t know how great that is for Jeff and me because ALL this time, we always just had to guess or assume what he is feeling but could never be too sure.

One of my greatest fears about Raiyan is him not being able to communicate to me if he is in pain. Over anything else, whether it is to do with not able to have a conversation with him, or whether he can ever have friends or if it’s dealing with his tantrums and obsessions etc, nothing worries me more than the possibility of him getting hurt and he is not able to tell me about it.

So what we’ve seen for the past 2 days really means a lot and can help to slowly minimise that fear of mine. Of course I am forever thankful that with just 7 weeks of therapy he is able to do this already. Alhamdulillah.

Autism discussion on CNN's Larry King Live


The previously postponed episode on Autism by Larry King is now scheduled to be shown on Wednesday 9pm Eastern Time, which if I'm not mistaken, will make it Thursday Morning 9am Brunei Time.


The theme of the show is "The Heartbreak... and the Hope of Autism" and he will be interviewing teenager Jason McElwain who is living with the disorder along with the famous autism advocates/parents, Holly Robinson Peete, Doug Flutie Jr and Toni Braxton.


Hopefully, the show will help raise more awareness on autism and in particular, giving hope to parents in the positive progress of their child!

Week 6 Progress

Here are some of the achievements I have noticed in Raiyan in the past week:

  1. Raiyan is starting to able to answer “why” questions where he would always first say “because”.. and then followed with whatever comes to mind. The best response I have received is when I asked him (when he was crying) why he is sad and he said “because I want to watch playhouse Disney”;
  2. There have been times when we thought that something he likes was becoming an obsession but surprisingly it didn’t. Times like these, we have to remember that neurotypical children also tends to like things very much so we should give in to Raiyan sometimes too because so far he has proven that he is able to really, really like something without it developing into an obsession that he has to have with him at all times;
  3. He likes to watch episodes of Mr. Bean with us and talk through what is happening (I think it helps that Mr. Bean’s show is silent). So I would ask him what Mr. Bean is doing in a particular scene, how he is feeling, where is he etc and he would answer every time because he understands what it is I’m asking him and he equally enjoys communicating back what he understands from watching the television;
  4. His library book was another story book (yay!) called “Ted and Friends”. He’s also really into the book “Goldilocks and the 3 bears” because he is learning the terms big, medium and small now so he enjoys pointing out what is big, medium and small within the book;
  5. He seems to be more interested in being engaged with what we are doing. The other day, he sat with me the whole time I was making the cupcakes, curiously watching everything I was doing the whole time. I tried to help his speech by describing what I’m doing like, I’m pouring the milk, I’m breaking the eggs and I’m putting the tray into the oven (all of these he can easily understand now!);
  6. I caught him lining up his blocks on the floor the other day but before I concluded that it was just another autistic trait, I saw that he was using the line of blocks as a track for him to race his cars on! Good pretend play!;
  7. He’s generally talking in sentences more rather than just one or two words at a time;
  8. He can colour pictures properly now as he tries to colour within the lines as opposed to just scribbling all over the page!;
  9. He took part in his class concert and he managed to stay put the whole time and even joined in the singing when it was his group’s turn to sing!;
  10. Instead of just screaming away when he doesn’t want something, he now tells us what it is he wants. For example, when it is eating time, Jeff insists he sits at the dinner table and he didn’t want to. We would usually just conclude that he didn’t want to eat but he then said “I want to eat on the couch in the family room”!

As I have said time and time again, I am continually amazed with the change and positive progress Raiyan has shown since he started his therapy. Even his aunts and uncles who probably see him once every 2 weeks can see the vast difference in him.

I just have to say, as well, through accepting Raiyan to have autism and having done the therapy with him, Jeff and I also understand him so much better and that just makes it so much easier for us in taking care of him compared to previous times. Instead of fighting him when he’s tantruming or when he insists on his ritual, we are told by his therapists the proper way to handle him, instead of getting angry at him like how we used to do. Understanding him for the way he is also makes us more prepared to handle him during all those unpredictable times.

I still cannot understand why there are some parents who are still strongly resisting the possible fact that their child may have autism. This is even when they themselves can see the clear signs. I mean I can understand to an extent, they may be doing this because of the strong stigma that exists against children with disabilities. But what these parents need to get a grasp on is that with autism, if you intervene early, we can try and reduce their “disabilities” as much as we can. I find it so depressing when I hear of parents that are “embarrassed” of their autistic children and would rather hide them from the world rather than tell people they have an autistic child.

That’s why I am so adamant to help remove this stigma by sharing Raiyan’s stories. In fact, FAR from being “embarrassed”, I am actually proud to share Raiyan’s stories and the amazing progress he is making. InsyaAllah Raiyan and other kids like him will one day prove to these ignorant people that they are far more worthy than to be hidden from everyone. Instead, they should be admired and be made role models!

When Non-Opposites Attract

Pweshes Babah XY gene + Pweshes Mama XX gene = Pweshes XYRaiyan

There are several theories proposed on the possible root(s) of autism, as I have listed some in my most recent poll. Unsurprisingly, I get confused when reading about each one of them that it is impossible to pinpoint any one as the definite cause of Raiyan being autistic. My personal conclusion is that it is probably a number of factors rather than just one. In the end, we have openly given in to the reason of “destiny” and how it is just part of God’s bigger plans for us.

Nevertheless I still find some of the arguments put forward to be very interesting and perhaps too coincidental and thus rightly deserving of further study. The theory that has caught my attention the most is Simon Baron Cohen’s opinion on assortative mating of individuals as expressed in his article entitled “When Minds Think Alike”.

I’m not sure what people’s general stance is on the term “soul-mates” but short of sounding ridiculously corny (warning: sickbag may be needed before you proceed), I have always believed that Jeff and I are “soul-mates” for the basic reason as to how similar we are in so many ways. Whether it’s the physical factor such as our facial resemblance (nya orang melayu, macam pinang di belah dua lah ah…), our height and size (ok maybe not so much now for postpartum pweshes mama but we were perfect next to each other pre-babies ok?!) and our same taste in style; or mentally, where we share the same philosophy in life, same moral standards, same sense of humour, same principles and beliefs, same taste in music, movies, books etc. AND don’t get me started on how incredibly well we get along with each other’s families. Even now, after almost 7 years of being together, I can still clearly count the number of times we have had major fights. The rest of the times of us being together alhamdulillah have been what I call effortless bliss.

Of course it’s not all a bed of roses and I do however confess to our relationship sometimes suffering as a result of its twin-like qualities. For instance, we are both such uncontrollable shopaholics and this have landed us into a few financial woes in the past (and present!). We both love to over analyze something or somebody’s actions or words that we would spend days doing so until we eventually realize or find out that we have wasted our time worrying over nothing. We both love to talk so we have to fight for the spotlight sometimes when telling stories to others. We encourage each other in our perfectionist ways to have everything in the right order (whether it’s hosting a Hari Raya open house, organizing an event at work, dressing up our children, cleaning up and arranging the house etc etc etc) to the extent that we get over-stressed on every little detail which would probably go unnoticed by others. All in all, because we are so alike, we rarely offer each other a different perspective or point of view on how to handle our problems and challenges. Not unlike the blind leading the blind…

So imagine my astonishment when I read the abovementioned article which quotes the “assortative mating theory” being a possible genetic cause for autism, where both parents share a common characteristic and have been attracted to each other because of their psychological similarity. Two particular patterns to look for in autism parents are a sense of strong systemization skills (in that everything has to be done systematically or in order) and the drive to analyze the details of a system in order to understand how it works (this is practically our hobby!). Hence, in the case of the People versus Pweshes Babah and Mama-Guilty as Charged!

Another related factor mentioned in the article was that a person in the family may have worked in the field of engineering. It’s so weird how this was pointed out because Jeff can be considered a “tooth engineer” and both his siblings are civil engineers. YIKES! Isn’t that spooky?

Another factor that may be relevant but somehow I would choose to ignore is that both parents have a more male pattern of brain activity and that the mothers of autistic children are more likely to have testosterone-linked medical conditions. I have sometimes in the past been insecure of my “gawah”, loud and unladylike self but I WILL NOT and NEVER WILL to an extent consider it as being a “male pattern” or “testosterone-linked” OKAY!

Just like in other theories such as the MMR vaccine and cable television, Mr. Baron Cohen (who you would be shocked to know is Ali G’s first cousin!) uses the fast rising rates as a back up to his theory because if we were to compare with the situation 50 years ago, there was hardly any proximity between systemizing men and women as there was a higher percentage of men in universities compared to women, whereas now the ratio of men and women studying together is almost equal. Also, now with the introduction of air travel, the mating pool is wider so an individual can mate with another from halfway across the world hence, because of the more choices laid out, the probabilities of meeting someone similar to you is higher. At the same time, Mr. Baron Cohen also highlighted that with the introduction of computers and other forms of technologies, there has been an innate need for everyone to be more systematic than they would like to be. When you think of the fast paced globalized world that we live in now, you’d be left behind if you’re not systematic in some way or another. Therefore there are altogether more systematic people now anyway.

Now before I start worrying you hopeless romantics over whether or not you should marry the person you are so convinced is the male/female version of you and especially when you are also a control freak, bear in mind that it is more likely than not that this is just one of those fluke presumptions. There are many, many other “perfect” and “meant to be” couples I know who do not have autistic children. And there are also autism parents out there who fall in the “opposites attract” circle.

Another concern about buying into Mr. Baron Cohen’s hypothesis is that if the cause is purely due to genes, then this means other children of the same parents will be autistic too, which is not necessarily the case. Yes, there is a higher chance of them being autistic too but it is definitely not definite. Alhamdulillah, my 19 month old Alisha seems neurotypical to me, talking and playing in accordance with the milestones of typical children.

Even if I was to believe Mr. Baron Cohen’s findings as true and that autistic children are only borne out of parents that are similar in nature, then the fact that they are similar should be considered a blessing as I swear, I’m only coping with Raiyan as well as I do BECAUSE I have a partner who understands me so well.

With Pweshes Babah, I am forever thankful for:
1. His consistent packing up of Raiyan’s school things the night before, which includes all the therapy stuff, spare change of clothes, show and tell items, swimming gear etc.
2. His persistence in feeding Raiyan his meals even when it seems so hopeless;
3. His open-mindedness and willingness to try things if we think it can help Raiyan;
4. Him keeping all of Raiyan’s books and toys in order so Raiyan can easily find them when he needs them
5. Him finishing off whatever I was doing with Raiyan, without me having to explain anything
6. All the times he knows when to swoop in and take over when he can see me starting to get riled up over the kids
7. Him still being able to maintain a balance in spending time with all 3 kids..
8. His active involvement with Learning Ladders
9. His equal interest to talk to K and J (Raiyan's therapists) as much as he can

and many more. ..

But most of all, I am forever thankful for the “matching” feelings, attitude and approach he has shown ever since Raiyan was diagnosed in December. It just convinces me even more how much we are meant to be together because I can’t imagine going through this journey with anyone else. Thanks Pweshes Babah! Love you loads!

One therapy is not one size for all

I was excited to read this article this morning as it was about a case in our neighbouring Malaysia, (the google news feeds on autism usually derive from the western side of the world). I don't know why, but wouldn't you agree that somehow we always feel more interested to know more if it involves someone of a relatively similar background to us?..in this case, it's another South East Asian family.

What I'm most pleased about upon reading the article is that both Lim, the mother and Mary Ann Joseph, a seasoned therapist in KL, used behavioural modification therapy (ABA) as the main method of therapy for autism (along with a combination of others, where it is apprpriately needed, like sensory integration). It's important to remember that not one therapy can be effective for all children with autism (no one size for all), but with the number of available options out there, I can't help but agree with what Lim said, which was "“We owe it to our kids to at least try each therapy”. The article listed out behavioural modification, mediated learning, speech therapy, sensory integration, brain gym, play therapy, music therapy, biomedical intervention and diet intervention as some of the available options out there. (Though I think it's best to not try them at the same time because if you do see progress, you would only be able to pinpoint the right source if you try one therapy at a time. If treatment is mixed and your child does show progress, you can't ever be sure which particular one is contributing to the progress). Alhamdulillah, I am lucky in that I am already seeing progress in Raiyan from the first type of intervention therapy that I tried, but I can understand that this may not be the case for other families.

I admit I have yet to visit SMARTER myself to see the available therapies they have to offer there. However, I know some parents that have sent their child there but found that the therapy did not work with their children. Hence, their need to look elsewhere. As I have previously explained, the circumstances around Raiyan led us to K, his ABA therapist first which sort of precluded our need to go to SMARTER (for now). Syukur Alhamdulillah, the ABA therapy seems to be working well with Raiyan and he has made incredible progress to date so I will continue with that until if ever there is a point when Raiyan may not necessarily benefit from it anymore. If that happens, THEN it would be very helpful for me as a parent to be given other options to try, which may include those offered by SMARTER or other forms of therapy that is not already available in Brunei that Learning Ladders will try to introduce in the future.

This is another reason as to why Learning Ladders was set up. Not just to provide the means of getting an early diagnosis through ISADD as I have explained in previous posts. But to lay out more therapy options for parents out there to try. For those parents that have been sending their children to SMARTER AND have been seeing progress with their children through the therapy there, then Syukur Alhamdulillah, you have found the type of intervention therapy that works for your child. But for those parents who still have a niggling feeling that more can be done with their child by trying something different, I would personally highly recommend you just try out behavourial modification therapy. If it doesn't work for you, then at least you can strike it off the list and then move on to another available option right?

So Heartbreaking

It's happened again. Obviously we don't know the complete details from the authorities yet but since the news quoted past "similar" incidences, one can't help but assume it's another "abandoned baby" case..

I just cannot understand why anyone would do this. Yes, I know of excuses that they probably can't take care fo these babies. OR in the case of teenage pregnancies, they are ashamed to tell others they've had a baby.

BUT THERE IS ABSOLUTELY NO EXCUSE for stuffing them in a plastic bag and dumping them in an isolated place AND LEFT TO DIE.

It's just too heartbeaking beyond words, especially when you think of all the couples that would do anything to have a child but aren't able to do so.

As a parent, I completely and utterly believe that a child is the best gift that can be bestowed upon us humble beings. They are true miracles placed before our very eyes that we should never take for granted. A child not only brings us immense joy and happiness but is always in the position to teach us adults things, however small, and more often than not, we underestimate the special and precious qualities they bring into our lives.

Which can't help make me question some people (ie. "animals") who has "underestimated" to this extent and has come to this point. This has unfortunately happened quite a number of times already in the past few years.How already lucky must these people already feel that they are able to throw a miracle of life just ilke that. I just do not understand.
PURPOSE:Hoping for more understanding and less judgment from all.

 To show the importances of early intervention and an evidence based treatment to help reach the full potential of the child.

 Offering other parents hope to have faith in the positive progress of their child.

Amin.
 
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