A Trip Into Raiyan's Mind

Auntie Wen Wen came back from Bangkok this morning and in her traditional pweshes darling auntie ways, bought each of the babies some goodies from her shopping expedition. Even though she (and along with everyone who knows Raiyan) is fully aware that Raiyan is verrryyy fond of animals and that up until about 2 weeks into his therapy, was actually an obsession for him, he has somehow proven to us in the last few weeks that even though he still dearly adore that part of nature, it however never reached a point where we would get worried over it reverting back to being an obsession.

So it is understandable that Auntie Wen Wen (who left for Bangkok on Friday night) found this t-shirt from Jim Thompson absolutely adorable and a tad frighteningly perfect for Raiyan:

I Wove My New T-Shirt

Jeff described it perfectly when he saw it: “WOW! It’s like Raiyan’s mind vomited and landed on this t-shirt!”

Not surprisingly, Raiyan took an immediate liking to the t-shirt and wore it straight away after Auntie Wen Wen gave it to him early this morning. So excited was he to wear it that he didn’t even bother to take off the t-shirt he was already wearing and ended up wearing 2 layers but yet not perturbed by how hot it must have been.

What I failed to mention to Auntie Wen Wen whilst she was away was that on Raiyan’s first therapy session with J on Tuesday after more than a week, Raiyan had a medium intensity tantrum because J brought a box of farm animal figurines but didn’t let him play with it when it was time to move on to something else. He cried and cried for 15 minutes until he actually fell asleep (hmm... scarily feels like the old pattern coming back huh...). I was actually very surprised that that happened because in my judgment as a parent for the last ten days, I had noticed him talking more about animals but I still didn’t think it was obsessive because he was always able to tear himself away from it when I told him to. But later that night, Jeff and I couldn’t help getting a bit worried because he kept throwing mini tantrums here and there just because he wanted to do things we didn’t allow him to. Instead of letting ourselves get too down about what was happening before us, especially since we haven’t witnessed such tantrums in quite a while, we just deduced his behaviour as an extended frustration from his tantrum with J for being denied the farm animals and didn’t dwell on it further.

But it didn’t stop me this morning from thinking this t-shirt might cause similar problems too. So I called my sister from the office, voiced my fears and asked if she can try taking it off at any possible opportunity. At lunchtime I was a bit startled to see that he was STILL wearing it but was slightly relieved when sis said that she had actually forgotten to try and yank it off him. I wasn’t really up to putting up a struggle during my short lunch break so I just let it go.

BUT, come bath time in the evening; I felt like I was re-visiting a nightmare that I have not experienced in a long time. Raiyan screamed and screamed “Jungle t-shirt! Jungle t-shirt!” countlessly whilst throwing his naked self around on the floor and the couch for almost an hour. He refused to wear his pyjamas and upheld his usual protest that always gets under my skin- refusing his dinner. Following what just happened 2 days ago, I panicked and nearly went crazy myself. Old memories of previous struggles came flooding back glued with overwhelming feelings of fear that this might be the consequence of Raiyan not having therapy and school for a substantial amount of time.

Thankfully, Jeff came back home in a completely rational state and tried bargaining with him.

His tactic to Raiyan?
Babah: “Raiyan, first eat dinner, second wear jungle t-shirt for 5 minutes ok?”

But Raiyan’s reply was simply “No. No eat. I want jungle t-shirt now.”

After coaxing for quite a while along this line, Jeff had to get more creative and went one step further:
Babah: “Ok, if you wear jungle t-shirt, then you eat ok?”

Thankfully, Raiyan reluctantly muttered “okay”

And syukur Alhamdulillah, upon having the t-shirt on his body, he obediently sat at the dinner table and finished his whole dinner... sigghh.... and after he finished his dinner, I told him he can wear his t-shirt for 5 more minutes to which he agreed! And sure enough, he took the t-shirt off himself with no drama at all after that..

Jeff and I still can’t help thinking we can’t comfortably leave Raiyan with anybody else just yet because it is sad fact that for now, only Jeff and me can get through to him. What was scary tonight was that even pweshes mama felt lost and surrendered to babah’s rescue in the end. If I can still feel like that, imagine how others can feel upon seeing Raiyan have his tantrums?

At the same time, we still didn’t allow ourselves to over analyse the situation so much and to jump into conclusions about Raiyan regressing due to not having therapy for more than a week. Furthermore, we tried to be empathic thinking how perfect that t-shirt must be for him. As Jeff said, that must be what his mind looks like!

Also, we focused on the positive in that we were still in control over the animal t-shirt in that we can use it to our advantage to get what we want. Concurrently, Raiyan is also showing his intelligence by using it for HIS advantage to get what HE wants.

Aaahh, I can just see ten years from now..
Mama: “Raiyan, we go for African Safari if you get 10 As ok?” heehee

The Love Affair with the Computer

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

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

Raiyan 3 years old

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

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

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

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

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

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

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

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

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

Raiyan teaching Alisha some computer skills

Building Blocks

I tried hard searching for an old picture of Raiyan stacking up his legos or blocks just like how I remember him to have loved doing so much, but unfortunately after scouring through all the burnt CDs containing his pictures since he celebrated his first birthday, I couldn't find even one single picture of him doing so! I can still remember picturing him carefully constructing his tall towers.. and how he would repeatedly get so frustrated every time his tower would get just too tall to withstand gravity and would inevitably break down.. Then he'd start stacking it all over again.. and the vicious cycle continues until we are forced to just pack the blocks away..

But on a happy note, especially lately since he has his newfound imagination, he is more keen to be more creative with his blocks with the help of his babah. These blocks he's playing with were actually given to him for his first birthday and finally it has been put to good and its proper use!

Raiyan was first excited to build what he called his castle:

Thinking these blocks aren't enough (and they're obviously not since probably the other 75% are all over the house), he pulled out these baby blocks and decided to build an extension to his castle:

And here he is putting in his finishing touches to the front door of his extended castle!

Whatta beautiful castle Raiyan! Good Job!

Another great thing was Alisha accidentally broke it down twice and naturally he cried, but alhamdulillah it wasn't a tantrum! And as soon as I started helping him re-construct it back, he stopped! But not before muttering to himself "I don't like Alisha.. I don't like Alisha now.." Heehe.. I know I shouldn't be encouraging him thinking such things about his sister but I still can't help thinking how cute he was for saying that!

Week 9 Progress

• I have noticed that Raiyan is starting to get more aware of his surroundings now which has resulted him to be at times kinda “sakai” with a lot of things... like today this was how he looked like when his class teacher was reading the class book out loud. Not only was he so fascinated, he stayed put like that THROUGHOUT the book was read!!

Wow...

• His attention for things around him now is so good that he hardly sits back in the car.. He’s always sitting upright and keen to see things outside the car that he can call out for!
• He is beginning to learn things by himself that was never taught by K. For example, he always bagi salam when he enters the house and when we give salam, he knows how to balas by saying “walaikumsalam” instead of just repeating “assalamualaikum”;
  
• He was able to tell me the other FOR THE FIRST TIME EVER what he did earlier that day with J. The conversation went like:
  
  Mama: Did you see Mrs J today?
  R: Yes
  M: What did you do?
  R: Animals!
  M (thinking “how typical”) further asked: Where were the animals?
  R: In the computer..
  M (“hmm, maybe we’re going somewhere here..): You just look at animals in the computer?
  R: Aaahh.. magnifying glass
  M: You looked through a magnifying glass?
  R: Yes! I look at animal footprints!
  M: What animal footprints?
  R: Aah.. a leopard, an elephant, a cat, a dog
  
  Ok so before I got too excited, I called Mrs J and asked if there was a computer, magnifying glass and animal footprints during his session today and she simply said “yes!” He was looking at animal footprints on the computer using a magnifying glass!!!!!! Yahoooo!!
  
• He is keen to baca Al-Fatehah with me every night before he sleeps. I could never get his interest to do this before..Alhamdulillah for this achievement..
  
• He is my helpful assistant when buying gas for the car (which he would say “Car thirsty. Car needs a drink”!) by giving the gas attendant the money when it’s time to pay!
  
• He is constantly playing with something now that involves his imagination which has naturally caused him to spend so much less time on the computer and the TV!
  
• He has an absolutely endearingly beautiful relationship with Alisha now.. They always play together.. They sing “rehab” together with Raiyan saying “we need to try and rehab and I said” and then Alisha says “no, no, no” hahaha I know I’m sure you’re appalled at me for teaching such stupid things.. but it’s funny!! Anyway, witness their obvious love for each other at this post;
  
• He’s developing his own natural sense of humour now by laughing at genuinely funny things on TV and joking around with me over really silly things. For example, he just loves to take pictures of me when I tell him not to and he would laugh hysterically when he still catches me when I’m trying so hard to avoid him!
  
• He still has big difficulties with his “L” pronounciation so there are still many words that he says that we don’t understand. Before he would get so frustrated and tantrummy when we don’t understand what he’s saying but now he just laughs at himself when I just don’t know what word he’s saying heehee;
  
• His arts and crafts now are clearly showing how much his imagination has developed. He came back with this the other day, which was supposed to be a T-Rex. He was so proudly carrying it over the place and we were all complimenting him even though none of us thought it looked anything like a t-rex! It was only later that I asked him specifically what it is and he said “dinasour bones” and then it occurred to me how that made more sense because the sculpture he brought was white and had lines on them!! DUH mama!!

Another amazing week huh?!! Alhamdulillah for everything!!! Till next week!

Playing Dress-Up

Like all parents I’m sure, we love dressing up our children, especially when there is a particular reason to; special dress yellow/black/white day for national day, dress in a costume for an end of year concert, dressing them up in national costume for hari raya etc etc. We just love to do it to see how ridiculously adorable they look. Pweshes babah loves it more if he believes that his child’s costume is the best out of the lot (over-achieving parents reading this can relate right?)

This was why when Raiyan’s old school had a come to school in black, white and yellow day, in conjunction with His Majesty’s 60th birthday and whoever had the best costume wins a prize (!), Jef went out of his way to create a costume for Raiyan. This during the time when Alisha was probably just a week old AND when he was incredibly busy being the Secretariat for the Brunei National Tattoo which was starting around the same time. Yet his determination prevailed and he managed to stay up sewing and concocting his creation with the best hopes that his son will win the coveted prize.

Of course with knowing how sensitive Raiyan is to change and things that are obviously strange to him, we were very apprehensive on whether or not he would wear it. Sadly, even after being offered a giant bag of Doritos, he absolutely refused to wear it and went ballistic in wanting to take it off, as you can see below. It was so traumatic for him that he went straight to sleep and ended up not going to school. And the costume still hangs, unworn, in the closet till this day.

Take it off!!

AAAGGHH!!!

Fast forward to now, when we have already started to notice him trying to play dress up on his own and understanding the concept of the purpose of it which is to “pretend” to be the person/thing he is dressing up as.

This week at ISB was book week so the whole week was filled with many activities involving books, including book sales, parents reading to students, students reading to parents, decorating classrooms following the theme of the book and many more. Jef volunteered to read “Ducky Dives In” to Raiyan’s class on his last day of leave last Monday and managed to get everyone engaged by quacking and flapping their arms whilst going through the story. Thinking how the children are familiar with that character, he decided Raiyan should come as Mucky Ducky the main character of the book to today’s “dress up as your favourite book character” day.

Recycling and modifying an old costume that I had worn for a costume party we attended 7 years ago, Jef spent the whole of Wednesday night making Raiyan’s ducky costume complete with the eyes, beak, wings and bushy tail. And yes, he was overly anxious the whole time he was doing it knowing he is again running the risk of Raiyan not wanting to wear it like the last time, but was nonetheless determined we give it a try.

I am happy to report that it was a success!!! In fact, it was beyond our expectations because he continued to wear it throughout school, throughout the afternoon and until he fell asleep at night! Alhamdulillah!! What an AMAZING progress!!!!

doesn't he look JUST like mucky ducky above?

Well Done Raiyan!!!

Pweshes Philosophy On Autism

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

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

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

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

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

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

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

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

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

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

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.

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.