Literal Mind

Raiyan wanted me to put on his new Transformers DVD (which has now taken over Dinasours as his new interest) into my laptop. I was ONLY trying to impress him with my new Macbook Pro which has a CD slot where you just put the DVD in and it automatically sucks it up (instead of the conventional way of you pushing the DVD in). But still I forget sometimes of Raiyan's literal way of thinking cause as soon as I said "watch my computer eat up the DVD Raiyan", he let out this loud wail and started crying! So I asked him why and he said "Now my DVD has broken up in little pieces because the computer eat it up!"



Okay, now that I've gotten that confessional side of me out of the way, I shall just dive in and inform all of you on how Raiyan is doing.

Raiyan is doing absolutely great!! Jeff and I attended a parent-teacher meeting thingy about 3 weeks back and after our initial apprehension of being on the receiving end of continuous complaints of Raiyan's autonomousity (is there even such a word?) or more specifically his tendency to not listen to others, we were more than pleasantly surprised that though he still does that at times, it is in no way at a worrying state, AND his competence in learning far outweighs that particular fault of his. Jeff and I thoroughly enjoyed every minute of our 2 hour consultation with all of Raiyan's teachers. And I'm not exaggerating here folks, BUT at least 2 teachers particularly said the controversial word: That Raiyan is now "indistinguishable".

I know ABA gets a lot of flack from the autism acceptance community because it apparently strives to make the autistic child ultimately look "normal" and therefore you could argue, "indistinguishable" from his peers. Now, if you have been an ardent follower of this blog from when it first started in January 2008, you would know that I never had such intentions when Raiyan first embarked on his ABA journey. All I ever dreamt of for my baby boy was for him to be able to communicate with others and to form meaningful relationships. Though we were committed to work on his behaviour (tantrums, stims, no eye contact, lack of social skills), they were hardly a priority for us as all I ever really wanted was to be able to have a conversation with him.

Now, we know Raiyan has gone beyond that point when Kerri informed us some months back that all his basic language are in place and what is left is for him to utilise them appropriately, together with acquiring appropriate behavioural and social skills.

So how did I feel when the teachers mentioned the word "indistinguishable?"

  • For starters, I felt relief because I have always been worried about Raiyan bringing too much attention to himself to the point that the teacher might single him out for whatever reason and he may need to be reprimanded. There have been times in the past where Raiyan was attracting such negative attention that there were points where we felt we were being cornered out of the school! So to know that the teachers were not more worried about him than the next child is indeed a major relief; 
  • Disbelief. I still constantly worry about Raiyan. Admittedly, not as much as I did 18 months ago but I am still worried about him not being able to progress and attain the next level he is expected to. I guess being a parent, and not just a special needs parent, will always cause me to have that little "uri" (worry in malay) voice at the back of my head. So even if I kept hearing the teacher saying Raiyan is indistinguishable, I think at this point I am still choosing to not believe it so much only because I don't ever want to get complacent about it all. 
  • Proud. I know for a fact but cannot possibly describe into words how hard Raiyan and his therapists have worked this past 22 months. So I believe the compliment of being called "indistinguishable" is a testament to the extraordinary efforts that have been put on by all of us as a team but especially Raiyan, Kerri and Jo to get him to where he is now. 
  • Confused (?!) and I think this is what relates most to my long hiatus in blogging- HOW am I supposed to write about Raiyan and his autism when apparently, he is behaving not much different than the next boy in his class? 
In the end, all I can take away is an "opinion" of his teachers and technically and strictly speaking this by no way means that Raiyan is no longer autistic. The fact that remains is that he is still going for his 4* a week ABA therapy, we are still constantly working on his social skills, we are still working on him expressing his emotions better, we are still needing to take double or even triple the time to explain him something new, which typical children can understand straight away.... and for the most logical reason, his autism spectrum disorder diagnosis dated 8th January 2008 still stands and the only way to once and for all "undo" that diagnosis (IF he is indeed indistinguishable) is to have him re-diagnosed which we still don't feel quite ready to do just yet. (We are however planning for one sometime next year). 

The point is, I have loooonnnnnngggg accepted Raiyan to have autism and what's more than that, I have loooonnnggg been grateful that he has it because as cliche as it sounds, our family's lives have simply been so much richer and more meaningful ever since it touched us and entered our lives. So YES,  everyone who meets Raiyan for the first time would most probably have NO CLUE that he is autistic. And so, it would be easy for us to hide it and act that Raiyan is a typical boy. 

But I just can't do that. Raiyan is where he is now with autism playing a part along the way. It HAS OBVIOUSLY been a part of him all these years. I don't know how much it's a part of him now but I don't doubt it's still there. At the same time, I am not at all certain how much it will be a part of him in the future. All I am saying is it doesn't matter. Raiyan is Raiyan and I welcome you to continue reading about him in whatever way you want to view him. 

Why I have not written more

I just don't understand why it is so difficult for me to update this blog more frequently. Sometimes I aspire to write a post much like how I used to write them a long time ago - a post that specifically focuses on one topic but of course with much depth. But I think I soon realised that I have to concede to such dreams as:

1. Raiyan's progress lately has not been as much of a big leap compared to how it was like before so there is not much to write in one post about one particular progress. For example, I can't exactly write a whole long post about him now being able to acquire new words for emotions in one week. I mean I could  but...

2. Okay it's more due to my own fault in not really taking the time out and being more introspective into it all. What else can I say but it's hard! Now that Alisha has started playschool, she is talking more and she fights for my attention as much as Raiyan. And don't even start on Addin! The boy is constantly jumping and leaping and rolling about literally just to get my attention!

Suffice to say, I have abandoned my need to maintain a certain quality in my writing if it means I can be more frequent with my simple but informative updates about Raiyan's progress! THIS ironically coming at a time when Raiyan's grandmother (and my mother) had just recently won the prestigious South East Asian Writer's Award for Brunei Darussalam! I apologise in advance to my mother in the slight decrease in "thought" placed behind my writing but at this point, I really have to place more emphasis on specifically Raiyan's progress rather than the "pretty" way I write about it.

I don't even know why I felt the need to let you all know about this but I feel better that I have. Plus at least now there is a new post! Hahah!

Listening and looking... again.. and again...

Time flies so fast these days and I really can't believe I haven't posted about Raiyan for almost a month! This post is definitely long overdue so I thought I'd just sit myself down finally and update all my readers about Raiyan's progress.

Overall, Raiyan has been doing well. In school, he still has Jo support him in some of his classes and though he is coping well with the work, the main problem with him as conveyed to us by his teacher is still his tendency to switch off, tune out and not listen to what she is saying. This, along with him not looking at the person he is talking to so has clearly been a problem for his class teacher to handle. Another difficulty in class is also his need to be prompted to finish his task and how he needs constant remindings to carry on doing his work until he's finished. As usual, what Raiyan tends to do is to start on some, then switch off and start turning to something else he's interested in. I have to stress that this is not a huge problem but it is part of the work in progress that we have to do with him so that he is able to keep up with the rest of the class well.

Outside school, Raiyan is still having ABA sessions with Kerri once every 2 weeks and Jo 3 times a week and the things we are concentrating on are (well apart from constantly making him look and listen):

1. Continuing on with verbalising clues: He is getting much better with this and he is coming up with some very good independent answers. Of course with his special mind, some of the answers that he comes up with can be bizarre but the things is, they are not necessarily wrong! They are just things that doesn't occur to us immediately. And at the same time, things that seem natural to us, Raiyan simply doesn't get! It just shows how deeply analytical his mind can be and he would rather see the more difficult point rather than the straightforward one.

2. Maths: Of course this is to help supplement what he is doing in school. Though Raiyan can do simple sums with his fingers and in his head, we are trying to go further and make him understand the use of the numbers and not just simply count and memorise. For example, we want him to know instantly that 2 + 5 is the same as 5 + 2. Raiyan was also having difficulties with the different descriptions used such as plus, add on, more than, minus, subtract, take away etc etc. He is fairly familiar with them all now but he still gets confused and that delays the instantaneous answers we sometimes seek from him.

3. Money: Hand in hand with maths (or so we think), we are trying to familiarise him with coins (which was something I had tried to start with a while ago but it was just too difficult at that point so we gave it up for a while). We decide to pick it up again since it is something that he is doing in school (who makes it more confusing by making the children learn BRITISH coins on top of Bruneian coins!). So far, we have started with 1 cent, 5 cent, 10 cent to make up 20 cent or 50 cent coins. This was very challenging for Raiyan again at the start because he just couldn't get the concept of a single 5 cent coin making up 5 one cent coins (with him being so visual he needs to SEE the five separate coins for him to think it is 5). There was even a point when he looked at the DATE on the coin and thought THAT was the value of the coin! Of course we were like "nooooo.. don't make it more complicated than it already is!"

4. Emotions: This is another thing that we haven't done in a while, so lately he has gone back to the basic emotions of happy, angry and sad only whenever asked how somebody feels. We need him to learn a much wider range for him to help him with his comprehension and composition work. Kerri gave a box of emotion picture cards for us to work on and I'm also keen to use the "moods" application on my iPhone which has a wide range of smiley faces characters displaying many different types of emotions. Already in the car just now, he reacquainted himself with "annoyed", "irritated" and "disappointed" which are all the types of feelings he feels when Addin takes his toys away!

So these are the work areas that Raiyan is focusing right now along with being constantly reminded to listen and look when someone is talking to him and when he is talking to someone. When I think he wasn't listening, I would ask him "what did I just say?" and make him repeat what I just said. Also, if I know he's not listening, I'll just stop talking abruptly and then there will be an awkward silence and then he will realise that something went wrong and that's why I stopped talking.

To improve on his looking, we also keep playing the "looking game" where he has to look at my "face" (because looking in the eye is difficult for them) for as long as he can. His record at the moment stands at FORTY seconds, with his eyes not leaving my face at all! What he does instead is look at my eye, then move a bit to my nose or my mouth and then look back at my eye and to me that's really good already!

As for independence skills, he can go to the toilet and wash himself already, he can take a shower and change his clothes by himself to, he eats at the dinner table at all times and the best news of all (well for me anyway) is that he has finally stopped stroking my elbow when he is about to go to sleep!!

Syukur alhalmdulillah for all the progress Raiyan has made this past 20 months! Will keep everyone posted, promise!

What did you do in school today Raiyan?

Finally, Raiyan is starting to be able to tell us what he does in the school day. All this time, it was soooo difficult to elicit any type of response whenever I asked him simply "what did you do in school today Raiyan?". I soon realised that my question was too big, too vague and Raiyan just did not know how to answer it and not so much he did not know what the answer was. This was similar to us always asking him who he played with in school. At first, we just could not understand what was so hard for him to give us the names of the children he played with because we know for a fact (from Jo who sits in with him in school) that he does play with other children. What we discovered we had to do was to specifically ask something and to do it on a step by step basis.

So first we ask: Did you play with friends today? [Yes]
Next: How many friends did you play with? [Stuck - because he still thinks this is too big and it will take time for him to count all the friends he had played with]
Try again: Did you play with friends during breaktime today? [Yes]
Next try: How many friends did you play with during breaktime? [2]
Next and finally ask: Who are the friends you played with during breaktime? [ "him" and "him"!]
We can then also further ask if he played with other friends in the classroom or during any other time during the day and he would answer different friend. All of these just goes to show how important it is to ask "leading questions" whenever necessary to get him to what we expect him to answer and then once he's in that place, it's then easier to ask him other related questions!

So when it comes to what he did in school, we are using this similar pattern of questioning too by starting with something simple like asking the "subjects" he had sat in which he can do as they are more or less the same subjects he sat in Year 1 so he is already familiar with them. So I would ask him my favourite question of the day and he would just list the class timetable of the day in the order he sat through them - literacy, snacktime, numeracy, ICT, music and swimming. After that, I could be more specific and ask him what he did in ICT and he'd say he clicked on the computer to open a folder and he did some colouring etc But now he can even volunteer to say more like just now, he told me how he clicked his folder and then it was empty and Mr. Want was telling him something he didn't understand!

We are also really happy to hear that Mrs R, his class teacher has been nothing less than great. She seems to be really interested to know and learn the ways to communicate with Raiyan and to get him to follow her instructions. I've also witnessed myself her communicating something with Raiyan in a systematic way just on the second day of school! When Raiyan was checking with her if there is ICT today, I saw her tell Raiyan "Yes, but we have assembly, then numeracy and then snacktime and then library and then we have ICT" :D

Looking forward to hearing more about Raiyan's days in schools from now on!

Good Idea Raiyan!

Raiyan has begun to notice the roadkills we often see on the road and is getting especially worried about having to see quite a few in just one week. So yesterday, he turned around and asked me,"Is there no traffic lights for animals? Like for people to cross the streets?" Of course I said, unfortunately there isn't any for animals and traffic lights are around only for cars and for people. Then he asks "but why not? otherwise the cars will knock them when they cross the street!" I didn't know what else to say but "I guess no one has thought about building traffic lights for animals!' to which Raiyan then said "well, when I'm bigger and have more money, I will build traffic lights for animals too!"

Fake Raiyan?

Over the holidays, we have been trying to widen Raiyan's interests beyond just his obsessions with dinasours and animals, as we kept telling him that not everyone are into those things as much as he does and if he wants to keep a conversation with other children, he needs to be able to talk about other things too. We have tried to make him watch "Ben 10" (which I believe would be the "in" thing with boys nowadays?) and I have to commend him for trying but somehow after a couple of tries, he still couldn't get into it.

But the one "cool" thing that my sister did manage to sustain his interest in was "Transformers" and she actually made him sit down with him through the whole DVD playing of the movie. Admittedly, he was a slightly hesitant in the beginning but after a while, and especially since there was some form of correlation with dinasours with them transforming into something that looks like them, he really did seem to enjoy the whole movie and he even acquainted himself with some of the characters' names. However, between that time and this week when he started school, it still wasn't something that we saw he reeeaalllyy liked as once he got home, he still got back to his dinos and animals stuffs.

But Jo told us that on the first day of school this week, Raiyan was striking a conversation with the boy sitting next to him and I guess he figured that dinosaurs was not a common interest so instead, he actually started using the talking points on transformers that my sister shared with him while they were watching the movie! And then, there they were, actually having a "real" conversation about transformers! :-)

It was so funny cause Jo was just listening in the corner thinking "oh my, these are all lies! lies! hahaha!" Well of course they are not "completely" lies but we do know that he doesn't love transformers as much as he sounded! We can't help but be so proud of him as he really did work hard during all the social skills sessions Kerri organised over the holidays. And we're so grateful that he is able to recognise it when another child is bored or disinterested in what he is saying and not only is he okay with that but he actually is beginning to handle the situation better by adjusting his actions - something we hardly imagined he can do! It seems so contradictory in nature for Raiyan to have autism and at the same time have this innate need to please people (which is not at all surprising with both his parents having that same nature!) but I think it could act as a double edge sword. On one hand, it is helping his social skills at a faster rate than we expected and we are truly surprised that he has reached a point of knowing to be "fake" to please the person he is talking to, which is undeniably a basic and common difficulty for individuals with autism. But at the same time, I do get worried since I know how difficult it is for him to do this, that he might get too guilty for not being able to please everyone. I already see this happening when he gets really upset if I tell him off for something or when a friend ignores him. I think I really need to be conscious to not make him feel like he needs to please people all the time - which I'm sure is an alien thing with him since ALL he has been doing for the past 20 months is pleasing us with all his achievements! I guess this is another chapter in our journey of balancing autism and the world that we have to be aware of.

In the meantime, can anyone suggest what other "cool" topics Raiyan can talk to his friends and be "fake" about? heehee...

Countdown to school

Raiyan is starting Year 2 (!!) in a few days time and similar to what we did last year, with it being a whole new classroom and a new teacher, we brought him round to school about a week earlier to do an advanced going around to familiarise himself with his new surroundings.

As some of you may remember, Raiyan's start to Year 1 last year did not run smoothly. Though the change in environment he already accepted because we had already done the early rounds, he was still disturbed by the change in timetable, change in classmates and most of all the change in "rules". For example, in Reception (the year before Year 1), he had to take his shoes off outside the class and also when he's about to go into the sandpit but somehow for Year 1, he didn't have to! There were also different rules about going to the toilet along with so many others that you can't help but just put down to some of the teachers' individual preferences. So to put a long story short, the rocky start to Raiyan's Year 1 really struck a chord with all of us caregivers and therapists that we are trying very hard to not let it happen again.

So we've brought him round to school twice already. the first time was just to know where his new class was, to take a look around the inside of his new class and also to meet his lovely new teacher for Year 2. We are especially grateful to the school for allowing Raiyan to do this and especially to Mrs R, the teacher for taking the time out of a very busy schedule I'm sure, to spend some time with Raiyan in the class. The second time, Kerri advised we take him in wearing his school uniform complete with his school bag and snack bag and this time, we even sat down to have a snack (which incidentally IS different as in Year 1, they had their snacks outside the class but now in Year 2, they eat inside!).

We are so happy to report that Raiyan was fantastic with all the change. He has really come to a point now that as long as we warn him earlier of what is coming, he really takes in changes and new environments in stride. Of course it is admittedly an added effort on our part to every time have a long drawn talk with him before we leave the house to say EXACTLY where we are going to go (and also repeating it again and again every time he asks along the way in the car! WHICH, if he sees us using a different route than he's used to, he will INCESSANTLY do until he's really convinced we are going to the same place!).

Mrs R has been really excellent so far as well and already we can see how well she is able to converse with him and she is quickly catching on stuff we have to constantly work on with Raiyan which is, keeping his voice low, not interrupting people when they are talking, looking in the eye of the person he is talking to and sharing his toys. Because we have been consistently encouraging all of this at home, it's really vital that it be the same in school too.

So school starts this Wednesday and we are taking him to school one more time on Tuesday like how we did this week. All of us are still awfully nervous though we are feeling slightly more positive after the good early runs so far...

Wish Raiyan lots and lots of luck! Will keep you all posted!!

Updates, after what felt like an eternity!

I've been whisked away to the other side of the world for work purposes, yet again, for the past five weeks and naturally have not been closely following Raiyan's ABA programme, which I feel so very guilty about. As guilty as I am about having neglected this blog for more than a month. So this post is indeed long overdue and yet again, here I am promising more frequent updates from now as hopefully I will be staying put for at least 2 months!

Of course, I'm not going to kid myself and write a long post about Raiyan's development for the last 5 weeks because apart from the mini notes courtesy of Jo, I really have no idea. I do know however from his ABA file the areas that Raiyan has been working on (some of them are actually those carried over from the last session I had sat on which I'm happy to see as at least I'm familiar with them). As I might have mentioned in a previous post, Raiyan's basic language is in place, so the focus now is to expand his descriptive language, his vocabulary and his imagination and in turn his understanding and general knowledge of things around him. His current programme consists of the following:

  1. Comprehending and verbalising visual clues - We still have many copies of this activity to go through where we ask Raiyan various questions about a picture and make him explain his answer. Eg. if there is a picture of a girl picking flowers, we can ask Raiyan "Have the girls picked the flowers?" (which of course Raiyan would simply say "yes" to), then we ask "How do you know?" which hopefully Raiyan will answer "because the flowers are in her hands". It may be simple to you and me but this was very tricky for Raiyan in the beginning. Alhamdulillah, he has improved on this so much and he is applying this more in a natural scenario too;
  2. Phonics - Using the Jolly Phonics book, Raiyan has managed to learn all the actions and exact sounds to make according to all the phonics. As we know, Raiyan was an early reader with him reading up to level 6 of the Peter and Jane books at 3 years old. But he did this through his extraordinary memory rather than knowing to the exact pronounication of the words or letters he sees. That is why when it came to writing independently, he would often ask us how to spell the words he hasn't managed to memorise yet and would not even attempt to spell it using the sounds the words make. So hopefully once he knows what letters and combination of letters make what sounds, he will be more confident to spell words independently;
  3. Time - so far, he can tell time on the hour and on the half hour. Now we are working on 1/4 past the hour and 1/4 to the hour;
  4. General knowledge - now he is learning what things are made of and this has extended to things around him and more than those that are listed in the activity sheets;
  5. Story writing - we brainstorm short stories together and then eventually, Raiyan will write them down. After that, we can match the writings up with pictures and decorations and make it look like a proper book. Actually, Raiyan already did something like this over the Easter holidays but with a lot of support from Jo. I will try to post pictures of that book very soon!
Okay, that is all I can personally share for now. Tomorrow I'll get to see Kerri myself since Raiyan is having a social skills session at her place in the afternoon so hopefully I can get more detailed information straight from her on how Raiyan is doing! I will update again soon I promise!

Bye Bye Tantrums

efore he was able to communicate his needs appropriately, Raiyan was infamous for his extremely loud cries. One of my girlfriends also commented how his loud voice was so unique and how it seemed to have different layers and facets too it (like a soprano layer, a bass layer, a tenor layer and a baritone layer if you care to imagine!). It was so loud that we always gave in to his needs as we just couldn’t find a way to make him quite down otherwise. If we happen to be outside and in public the only solution was to just carry him and whisk him back to the car.
Apart from the pain of having to tolerate the volume of his screams, it was far more distressing to feel helpless and not know exactly why he was throwing his fits in the first place. Often, we had to play the guessing game, the elimination game and we had gotten really good with inferences and assumptions by the end of it.
The golden lesson we learnt when he was first diagnosed and when he started his therapy was that we weren’t supposed to pay attention to the tantrums and better still, we completely ignored it. You can imagine Raiyan’s screams practically filled the house non-stop for the first two weeks or so when we employed this new trick. Alhamdulillah after persevering through, his tantrums indeed lessened within time as Raiyan soon realized that he wasn’t getting any reaction out of them. I guess it must have been strange for others to see when we did this in public since it is a natural instinct for parents to talk and console their child to try and make them feel better. As careless and evil as we looked, our faith in the technique grew more and more within time as Raiyan was seen to gradually move away from the excruciatingly loud screams to now a barely heard inside sob accompanied by whines and moans specifically telling us what it is he wants.
He’s been tantrum free for quite a while now that I think we’ve started to take it for granted. So it was a proud moment for Jeff yesterday when he was negotiating with Raiyan about something with another autism parent watching. It was during the social skills group session and Raiyan was instead too busy playing with his dinasours. This was clearly contrary to the purpose of the session so Jeff instructed Raiyan to put the dinasours away – an added challenge was the fact that he was already halfway playing with them (children with autism finds it really hard to suddenly stop something they are in the midst of doing and to shift to another activitiy. That’s why countdowns and advance warnings are very helpful for them). The other parent observed the whole time Jeff was telling Raiyan to pack up his dinasours which Raiyan eventually reluctantly complied with but not without his typical “pathetic” (as Jo and I call it! Hehe!) whines and sobs. And she straight after told Jeff of how impressed she was with Raiyan not really put ting up a protest and how there wasn’t a single shout or scream heard. Even in school, Jo often tells me how a number of teachers found it so hard to believe that Raiyan is the same boy from last year that they remember to be the one rolling around on the library floor screaming just because he couldn’t get to read his animals book.
I am so grateful for all this positive feedback not only because it reminds me of how much he has achieved as I admit, it’s quite easy to take for granted and and to actually think that he has always been like this! It’s also a wonderful thing because we are proving to others that it is possible for tantrums to be substantially reduced or even stopped. I can’t be sure if it was down to the consistent technique that we practiced or if it’s just due to Raiyan being generally obedient in nature. Nonetheless, I am so grateful and proud when I watch old home videos and clearly see what a “far cry” those chaotic tantrum moments were where we had no choice but to just give in to his needs, however irrational and inconvenient they were.

Raiyan and friends

Raiyan just loves to be around friends. It doesn’t even matter if they are children that he’s familiar with. It’s enough that he sees boys or girls that are around his age and he will attempt to strike up some kind of interplay with them. He usually succeeds in the past year when he does this at the beach or the park as the only games he and the kids would end up playing would be running, chasing and basically games that does not necessarily require verbally conversing maintaining a conversation.

However, it’s not quite the same situation in school and amongst his classmates and he is beginning to realize the increasing challenge of sustaining their interests in him when they choose to not engage in running and chasing and instead are scrummed together chatting and having actual conversations with each other. The sad part is that Raiyan doesn’t quite understand why exactly he’s getting ignored and instead he takes it personally and thinks that the other kids simply don’t like him.

What we try to tell him again and again is that sometimes other children may not want to play running and chasing games or they don’t want to hear him talk about dinasours repeatedly and that’s okay because they simply want to do their own thing just like how he only wants to do his own thing all the time. We try to prove our point further by reminding him that when we tell him to play with the children in whatever they are doing, he in turn says he doesn’t want to because it doesn’t interest him.

He’s getting more and more sensitive about this as just the other day, Jo was telling us about him playing hide and seek with a bunch of boys at school and somehow they forgot to find him and so he was still in hiding until he realized they’ve all left. So he went to Jo and asked “where are my friends?” and Jo pointed them out to be over there and told Raiyan to join them. But Raiyan poutily said “no. I don’t want to. They left me.” (Fortunately on this occasion, one of the boys came over soon after and said “there you are Raiyan! We are waiting for you! Come!” And Raiyan was all smiles again and continued playing with them. Sadly, there are other times which I’ve witnessed myself that Raiyan just gets completely ignored by his friends when he tries to engage them, especially when he starts going on and on about his dinasours and animals).

Hearing of Raiyan’s emotional reaction of being rejected is just too heartbreaking and yet we are also happy that he is finally capable of feeling such emotions. From being somebody who was oblivious to other children and couldn’t care less if there was anybody next to him to play and interact with, to become somebody who clearly possesses a strong desire to be part of the group is utterly and completely bittersweet. When we have to explain his friends’ actions in the simplest terms to him, we can’t help but say things like “but sometimes they just don’t want to play with you or they don’t want to hear about your dinasours and that’s why they are ignoring you” etc which to anyone I’m sure is very hurtful to hear. Having to then sit and watch him crying over what we told him is truly so painful but we just have to remember that this is a good stepping stone for him as it is only through realizing this feeling would he hopefully try and improve on his social skills seeing how important it is for him to have friends.

Kerri has lent me the Social Skills Picture Book (which I have placed in my sidebar) and I’m so overwhelmed with the abundance of social rules that need to be taught. Simple conversation skills that we take for granted and that comes naturally to us really have to be taught step by step in the clearest manner to children with autism. With Raiyan going up into Year 2 soon, there would certainly be more conversational interaction between the children that requires him to listen and respond appropriately at all times so it is indeed timely for us to begin systematically instilling these rules.

As a basic start, I’ve been drilling rules of talking to someone which is:

- To make eye contact

- To have quiet hand and feet

- And to not talk and interrupt while the other person is talking.

Alhamdulillah it is working so far with him making better efforts at doing all of these because he knows that if he does otherwise, this may lead to friends not wanting to play with him. At the same time, I also remind him that when others don’t want to be with him (which at times include me!), he doesn’t have to feel terribly sad about it because it may just mean that they can’t be with him right at that time because they are doing something else and if he just patiently wait and do something else first, they might just come back to him.

I admit that in the past, I was more pressured to carry out pressing on all these social rules for the benefit of others and shamefully I further admit, for myself. It was derived more from my needs for others to not view Raiyan strangely and my dreams of seeing my child accepted and belonging to a group. But I realize when those were my exclusive motives, I always struggled with my own guilt for feeling like as if I’m not happy with who my child is just because he’s not accepted by others. And within time, I stopped relentlessly drilling in him these rules day in and day out and I just decided to leave it to nature and see Raiyan traverse naturally into it according to his own needs and not others. For a while he has been getting away with it well, playing with a new friend at the beach and having a best friend from another class. We can therefore deduce that it was probably during all that time that Raiyan learnt the value of friends which has then culminated in him becoming more insightful with his friends’ actions. But I think we (including Raiyan) have all realized that what he has been doing before this is not enough to sustain the interest of six or seven year olds which would in turn justify the need to relentlessly drill some of the social rules because it really is that necessary if Raiyan really does want to maintain playing together with his friends.

Hopefully with this awareness in Raiyan now, teaching and guiding him in all of the social and behavioural rules will be somewhat easier because Raiyan can now understand why he needs to do them and he would be motivated by his own needs rather than just doing it for the sake of complying with what we tell him to do. And on my part, I am definitely more relaxed in my own so called “needs” because not only am I confident that Raiyan will insyaAllah be able to work through and master the skills we teach him, but I am also positive that friends would actually love to be his friend once they discover what an honest, loyal, gentle, loving, funny and incredibly interesting boy he is!

Can't Argue With Raiyan

Raiyan was expected to bring an “artifact” to school the other day but it slipped poor babah’s mind as he had to be a single parent again this week with me being away in Singapore. On one of the nights that I was away, babah typically brought the kids out to Hua Ho to spend some quality time together and of course for him to sporadically indulge in solely spoiling them without me putting the strict brakes on.

With Raiyan being all into dinasours now, it was no surprise that he went home with a new bucket of dinasour figurines (to add to his gazillion collections already). The next day, he very casually asked babah if he can take his dinasours to school for “show and tell” . We as his parents are somewhat aware that his class has “show and tell” sessions but weren’t completely sure on what day it was. Impressed with Raiyan’s initiative, babah gave the green light and Raiyan happily lugged his bucket of dinasour figurines to school.

The afterschool report we had received from Jo was just short of hilarious! Apparently, Raiyan had already sensed some level of guilt for talking and breathing dinasours a bit too much before Jo (as I think because Jo would see it more with her spending more time with him in school). So Jo told us of his immediate “uh-oh” look when he saw Jo come into class without a chance of him hiding his dinasours.

Jo: What’s that?

Raiyan: It’s my artifact because we are supposed to bring artifacts to class!

Jo: But Raiyan, that is not at artifact! Artifacts are old things that have been around for a very long time.

Raiyan: But DUH Jo, dinasours are artifacts because they are a million years old!!


Raiyan's first visit to the dentist

I had a dentist appointment today so babah and I thought that it's high time that Raiyan starts getting his teeth checked too since he's very closely approaching the big boy age of six!

Obviously before the therapy we couldn't imagine bringing him near one- this coming from the fact that he was terrified of new situations, sensitive to be touched (he used to scream endlessly while getting his hair cut) and also sensitive to certain loud noises (just last weekend he spent half of of the time watching Night at the museum 2 covering his ears). Actually brushing his teeth was quite a challenge too as he would never open his mouth wide enough so we always ended up blindly brushing his teeth as we couldn't exactly see his teeth with his mouth closed shut over the toothbrush stick!

For this first time we thought we'd just make him sit on the chair to get a feel of it and to only get his teeth checked. Which lo and behold we are proud to inform that he was completely fine with! Well we did give out loads of information beforehand to prepare him of course.

Look at him happily sitting on the dentist chair ready for his check up!

Do I look cool in these sunglasses mama?

Waiting for the chair to recline back which at first he still got quite nervous about!

Open wide Raiyan! We were surprised to find out that he got 3 permanent molars already! The dentist said that it's quite early since he's not even 6 yet.

Seeing how he seemed fine with just getting his teeth checked out, the dentist thought that he could try going one step further to scale and polish his teeth! Though there was a bit of hesitation at first, but alhamdulillah soon after he was sitting quietly with his teeth scaled away! Look closely! His teeth is actually being scaled- yikers! He's braver than me!

He really didn't like the taste of the polish so of all things that he chose to refuse just now was to rinse his mouth with the mouthwash cause he was scared it would taste the same as the tooth polish. So we gave him water instead but the poor thing has no idea how to spit the water back out! He just did the spitting 'action' with nothing coming out as he's swallowed the water already! It was sad (that he still doesn't know how to spit) and funny at the same time!

So I guess some of you may be amazed at how brave Raiyan was. Altogether I'd have to say that he really did surpass my expectations with how brave he was. But at this juncture I have to confess to there being one catch- the dentist was none other than pweshes babah himself! Hehe! I'm sure that factor helped a lot! :-)

But overall Congratulations Raiyan!

-- Post From My iPhone

Raiyan the Explorer

This was Raiyan as a dinasour explorer during his school's annual storybook day when students dress up as their favourite book characters. ( Remember last year he came as Mucky Ducky?)

For this year we sort of found out about the day in the last minute so babah didn't really have the time to be laborious about it as he was with the duck costume. So at first we really hoped that Raiyan would just wear the readymade Buzz Lightyear costume his grandma got him all the way from EuroDisney. But unfortunately because of his issue in not wanting to look too different from what he's comfortable with (I guess his love for animals made the mucky ducky costume bearable), he absolutely refused to wear it. Naturally we were disappointed and slightly panicking of what else he could come as. At the same time, babah and I ourselves just felt it to be wrong anyway since he wasn't really into Toy Story and the Buzz character so we felt untrue to Raiyan to make him wear something he's not exactly a fan of..

Thankfully our creative juices started flowing when we realised the usefulness of the explorer set I just got for Raiyan from ELC! Coupled them with grandpa's safari hat from Australia and a dinosaur tshirt from NY's Natural History Museum and taaadaaaa!

Not only was it free (in the sense we didnt hv to buy anything new or particularly costumey which he would probably wear only once or twice at most), it is completely authentic to Raiyan's self and he LOVED wearing it!

And here is Raiyan happily sharing his stuff with his friends. When Anna asked if she can borrow his binoculars, Raiyan sweetly said 'of course you can!'

Sigh.. It's just so lovely to see him so happy like this!!

-- Post From My iPhone

Dinasour Board Game

This is Raiyan's board game that he made himself! I especially love the part where you move back spaces when you're near T-Rex and move forward when you're near the baby dinasour. When I asked him why Raiyan said 'because the baby dino is cute!'

Oh and of course I was just amazed with the instructions he prepared too! His imagination has really come a long way Alhamdulillah!

The actual board game with circles as spaces! I asked what to use as markers he said to just use a pen and jot through the spaces!

-- Post From My iPhone

Breaking an autism myth

When I first started learning about autism, one of the things I had read was that autistic persons are not able to profess their love to others in words. Surprisingly, I had accepted that “fact” because at that point I was just content to have Raiyan just talk anyway, so the need for him to tell me he loves me was hardly necessary! Also, I was already comforted with Raiyan’s constant hugs and needs to hold me when he’s about to sleep as signs that he indeed does love his mama.

So I never had any expectations for Raiyan to say on his own initiative the actual words “I love you mama”. All I expected was for him to just reciprocate when I was the one telling him that I love him. Even this was a challenge in itself as in the early days, he would almost always say back “I love you Raiyan” (because of the echolalia) and it took constant remindings for him to eventually respond correctively by saying “I love you mama.”

Now, as you can tell from my recent posts, Raiyan is at such a good place right now and he is constantly amazing all of us with what is going on in that special little head of his. It’s like as if all of the things that he has learnt in the last 17 months are slowly falling into the right places and he seems to have a much clearer understanding of using what has been taught, not only in how he himself uses it but also in how others are using it too.

And yet, I still never expected him to independently say “ I love you” simply because that was one of the “facts” that I have accepted from the start as being a trait of autism.

Until two weeks ago when he has started to say this to me, out of nowhere, just out of the blue, without me initiating it.. the special words “I love you mama” came out of his mouth completely independently. And I really feel and believe he’s saying it because he really means it. My instinct tells me that he probably said this because he’s missing me more lately because I’ve been spending more time at the gym after work but at the same time I also really think because of this “everything falling into place” phenomena that he is going through, Raiyan has finally understood what it means to say “I Love You.”

He’s only ever said it four times in the last 2 weeks which convinces me even more that it is a genuine statement rather than it being a favourite phrase of the week! And I notice that when he says it, along with holding on to a part of my body very tightly, it’s also in this really loving and heartwarming tone that I do not doubt the love that he feels for me. He even had Jo sent me a text message saying “I love you mama, B-) Raiyan” last week!

So for any parent who thinks it’s not possible for their child to say “I Love You” think again! That’s actually just another myth as opposed to a fact in this complex world of autism!
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.

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