Week 16 Progress

It seems like Raiyan's receptive language has gone far beyond my initial expectations and this means that Jeff and I really have to start believing that he DOES understand a lot of things that we say. This has been very helpful in trying to reason with him when he refuses to do something we tell him to. For instance this morning, he didn't want to get out of the car once we got to Kerri's house because as HE said himself, he wanted to go to school. Later on, Kerri told me that she had to give Raiyan a mini lecture as to WHY he still has to come and see her despite him wanting to go to school because it is only through her will he be able to talk better with his teachers and friends at school. And surprisingly, it seemed like he completely understood what Kerri said because as soon as he replied with a hesitant "okaayy..", he ended up being happy and motivated for the rest of the session!

At the same time, because his receptive language is so good now, we ALL have to remember not to underestimate that knowledge he has because you just might not know what he'd be able to eavesdrop in when we're having our casual conversations!

Raiyan's expressive language is also coming along really well though there is still a long way to go. The key factor is to literally get him to talk and talk and talk all the time... I guess I have to admit that in my already verbal life (whether at work or in social situations), I talk a lot already. So sometimes it does feel cumbersome to force myself to talk when all I want to do is just sit back and relax but NO.. this is just TOO important and so I will continue to not shut up ever!!

His achievements of late are:

• Pronouns: He has mastered "he" or "she" and is almost there with "they". He has also gotten "my" and "your" but still gets confused sometimes. Trying to generalise "his", "her" and "their" now;
• What, Which, Where, Who and Why questions are almost mastered except when you mix them up! That is what we're trying to practise more of now. Slowly starting on "when" questions too.
• For the "where" questions, we are encouraging him to be more descriptive and getting the language out instead of him just pointing to where the thing is. For eg, we ask "where is your nose?", instead of just pointing to it, Raiyan will say "under my eyes."
• His abstract thinking is improving. When asked "what is the same with a parrot and a macaw?" Raiyan said "they are birds, AND they fly AND they'er colourful". We are doing more of this but making it more natural and not necessarily categorising the items in categories which we know he loves to do!
• His logical thinking is great! He especially loves this set of "irregularities" flash cards where a picture clearly has something wrong in it. For eg, a picture of a books in a toaster. We then ask Raiyan what's wrong with the picture, and he says "you read a book. bread goes into toaster." And of course being the cheeky boy Raiyan is, he'll be correcting this in a "duh, that's not supposed to be that way" tone! hahaha the little corrector!
• Raiyan has no trouble initiating conversations with others too. He would ask "what is that?" or "where is she?" etc. This morning, when I was with Kerri in the living room, I can actually hear Raiyan having a chit chat with Kerri's husband in the kitchen!

In terms of Raiyan's personality, I guess I'm not all that surprised that he's being more strong headed these days. Lately, he keeps protesting to do things but instead of tantrumming he will just say "stop it. I don't want to" etc etc. One particular thing he's so against nowadays is shaking others' hands and saying bye. His argument is always because he's doing something at that very moment. This just compels me to reason with him as to why it is important to shake his elders' hands and if that doesn't work, then I would take away what it is he's preoccupied with UNTIL he agrees to shake hands and this has been working lately.

Apart from the protests, I am amused to discover that he has a really cheeky sense of humour. As I have mentioned earlier, he just LOVES to correct things. Well basically he loves it when others are wrong and he is right! To the extent that sometimes he'd be debating with J on some things and when J gets it wrong he will laugh out loud!!

More stories next week!

Who is happier?

Sometimes, especially in those 2 weeks every month some people refer to as pmsville, I seriously think there is something wrong with me.

This is the time when:

• I get infuriated at others in the house for petty things like not switching off the air-con, leaving the tap on and misplacing the car key;
  

• I really fight to stop myself from screaming my lungs out when all three kids are crying and fighting to be with me at the same time;
  

• When my mother just says in passing “mamanya inda pandai ada di rumah bah tu, iatah durang menangis*”, it stays and lingers in my head for ages (*”they’re crying for their mommy cause she hasn’t been home much”, which this week is to an extent true but justifiably our Society has been really busy with a project which insyaAllah will bring HUGE changes and benefits for the children);
  

• I get paranoid if someone so much as brush me off slightly when I’m talking to them or respond to my full smile with a half one, and then spend ages thinking back if I did anything to upset them;
  

• I get insecure about my overall competence in anything;
  

• I really have to grit my teeth when all I feel like doing is complaining and whining all day;
  

• I really have to think about what I’m going to say because it feels like there are a hundred voices in my head telling me to say “this” or “that”..;
  

• I get overwhelmed with all the responsibilities placed upon me that getting out of bed feels like such a chore;
  

• I feel so fat and yet there I am eating everything in sight with my “bottomless pit” appetite;
  

• I get extra impatient with Raiyan
  

And the list goes on.. well not too much, I’m not a COMPLETE psycho

Seeing how Raiyan being autistic lacks certain aspects of emotions, feelings and social cues, it’s not far fetched to assume that he doesn’t or wouldn’t experience half of what I have to endure in pmsville (well add the fact that he doesn’t have a uterus either!).

Unless what he wants is his obsession, he wouldn’t get irritated at petty things that at other times don’t bother him. He wouldn’t feel guilt when people who love him are crying out for him. He couldn’t care less if someone doesn’t smile back at him. He doesn’t understand statements that have double meanings or innuendos in them. His eating pattern is rigid so there is no issue of appetite roller coasters with him. He doesn’t have to worry about saying the wrong thing because others are just grateful for him to say anything.

Basically, he is saved from all the ills that sometimes social intelligence brings. So maybe being a bit autonomous is not so bad sometimes ah?...

Learning Ladders on RTB News

RTB news ran a short segment on the Friday night news on Learning Ladders Society giving a brief insight into what we do... We actually had the shoot on Friday afternoon itself and didn't realise at the time that it will be broadcasted later that night! Otherwise, I would have given advanced notice of it on my blog...

I hope a lot of people still managed to catch it (I have faith that other Bruneians watch the national news more religiously than me!) as it helped explain exactly what Learning Ladders does in terms of the type of therapy we provide and also clarified on the fact that we CONNECT parents to professionals and these are professionals who have had 20-30 years experience with autism and other related disorders.

Our hero, Kerri Wilson (she was actually named in the news so I guess I no longer need to refer to her as "K" in my blog anymore) also gave a short interview (oooh, that makes her sound like such a celebrity! hehe but she IS in our books! We are so proud of you Kerri!) explaining what ABA is about..

We're still trying to get a copy of the video and once we do, I will post it on the blog. In the meantime, check out some pictures of the day over here..

Thank you to all the parents and relatives who came on that day to show your support! We really x infinity appreciate it!

100 Days Progress!

Yes, yes I do admit to being ridiculously behind with Raiyan's progress update. FIVE weeks to be exact.

There's no special story or significant justification behind my lax in not having done so. It's basically no more than just a loss of momentum due to inducing factors like school holidays, reduced therapy sessions, increasing workload at the job front for pweshes mama including a 5 day overseas trip... but perhaps the most substantial cause was the perfectionist in me succumbed to the pressure (which I realise I've placed upon myself - siapa suruh promise to give weekly progress ?) and as a result, rebelled from updating altogether!!

So I surrender. It's no longer going to be a weekly thing, nor bi-weekly and nor monthly. Let's just say that to help avoid a "ritual", I'll just post a progress post whenever I feel like it ok!

Furthermore, all the other random stories I tell still blends in many aspects of Raiyan's progress anyway right? So I'm hardly not reporting on his progress aren't I? (Ok enough defending yourself dude, I'm sure nobody else but yourself has placed such expectations on you! - pweshes inner voice).

BUT anyway, with this being the 100th day since Raiyan started his ABA therapy, I think it is momentous day for me to list out ALL of his achievements, at least those within the walls of his therapy sessions:

Raiyan has now generalised (employs on a daily basis OR "biasa udah"):

• Answering yes or no to questions posed to him;
• Many verbs including standing, sitting, eating, clapping, sleeping, laughing etc etc
• Naming body parts
• Naming clothings
• Naming all the rooms and things in the house
• Possession (Raiyan's nose/Mama's book/Alisha's doll)
• Pretending
• Can answer basic social questions like "what is your name?", "how are you?", "how old are you?", "which school do you go to?" and more
• Imaginative play
• Opposites
• Displaying and recognising emotions such as happy, sad, angry, scared, surprised and tired
• Prepositions such as on, in, under, beside, behind, front, over etc
• Greetings. He'll bagi salam or say hi and say bye easily
• Say short sentences that start with "I want.." and "Can I have..." and "I think it's a...", "It's a ..." "I see a..." and "I have a..."
• Hold pencil properly and write the alphabet appropriately
• Can follow simple auditory instructions
• Can sequence 5 picture cards, which comes first, 2nd, 3rd, 4th and last eg. a scene of a boy eating or opening a present
• Desensitised with new sounds
• Loves to read story books and able to understand the story
• Functions of certain things like pen, cup, car, chair, plate, and will be able to answer for eg. what do you drink with? with a cup!
• Can list out simple categories such as fruits, musical instruments, transportations etc
• Can answer random where questions?
• Can answer random whose questions?

We are still working on:

• Exchanging information (conversing)
• Trying new foods
• Desentising touch of wet and dirty things
• The "l" phonetic
• "my" and "your"
• pronouns: he, she, I, you and they
• First and Last but when you mix the sequence around he still gets confused
• Why questions?
• Reciprocating more social questions
• Gender: man, woman, boy and girl

Just starting on:

• Abstract thinking, For eg, his one track mind cannot handle an apple being a fruit AND a thing that is red.. We have to teach him that it's possible for something to have more than one purpose!
• Cause and effect
• Describing things more flowingly
• More critical thinking
• Imitating gestures

Syukur Alhamdulillah, Raiyan has really come a long way the last 100 days! Looking forward to the days ahead!

Thank you all of Raiyan's beautiful readers for all your support!!

Wat U lookin' At?

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

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

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

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

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

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

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

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

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

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

What not to say

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

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

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

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

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

Raiyan being empathic

This is my then 18 month old Alisha being her bibiran self calling out for her mama when I am just there in front of her. To my surprise, for reasons I can only presume to be annoyance, Raiyan came over and said what he said!

I was even more surprised when he then changed his tune and comforted Alisha with a peck on the cheek! So sweet kan? Too bad Alisha looked so weirded out though.. hehe

Raiyan's Auditory Memory

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

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

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

Bulan Kesedaran Autisma Sedunia

Khas untuk mereka yang ingin lebih mengetahui mengenai autisma tapi mungkin mengalami sedikiti kesukaran untuk memahami apa yang dikatakan didalam blog ini memandangkan ianya didalam bahasa inggeris, silalah baca link berikut yang mengandungi maklumat yang cukup menyeluruh didalam meningkatkan lagi kesedaran untuk autisma.

Ianya bukan sahaja menjelaskan tentang tanda-tanda atau simtom autisma yang patut diperhatikan untuk membantu memastikan bahawa anak tersebut mempunyai autisma tetapi pengarangnya juga telah memberi ulasannya mengenai pertikaian berkenaan dengan vaksin MMR yang dikatakan menyebabkan autisma didalam kanak2 (satu perkara yang saya sendiri selalu pening memikirkan..).

Apa yang penting sekali adalah ibu bapa kepada Ahmad, anak yang diceritakan telah dengan segera dan tanpa sebarang tangguhan lagi memulai rawatan pendidikan untuk Ahmad, dan sepanjang itu, menerima hakikatnya dengan hati terbuka dan juga sentiasa bersikap positif.

Please read the whole article here...

Raiyan and his "Speking Speking"

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

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

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

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

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

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

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

Errrmmm.. yeeaahh… MALU!