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I hope Raiyan can help to change the stereotype perception that Brunei has on autism now which I have found to be outdated, misguided, depressing and unhelpful.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

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!"

WHHOOOPPPSSS!

Indistinguishable?

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!