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. 

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!

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.

Happy News!

After exactly 17 months of therapy under Kerri's supervision, I was just beyond ecstatic to be told and confirmed by Kerri that Raiyan's "basic language" is in place. This means that from a place where he was completely unable to converse and was only communicating his needs with hand leading, crying or at best, uttering 1-2 words at most, he now knows and understands the use of "basic language" that has been directly taught to him in the last 17 months, such as:

• labeling vocabulary of body parts, rooms of the house, things found in the rooms, things found in places etc etc (nouns)
• functions of people, places and things
• prepositions (on, under, behind, next to)
• what is bigger, smaller, more than, less than
• all sorts of verbs like standing, eating, clapping hands etc
• what, when, where, why, who questions
• how questions
• opposites
• attributes
• adjectives
• past, present and future tense
• pronouns-he, she, they
• you and I
• contractions (he's, she'll)

and many more!

Not only can Raiyan converse with anybody now (providing people speak slowly and wait patiently for his lagging response! This we are still working on constantly!), he can easily independently write sentence after sentence to make into a paragraph. Just this week alone, he spent much time drawing a dinasour board game, complete with instructions on how to play, an invitation card to his birthday party for his teacher and all his classmates (complete with when and where it's going to be and what's going to happen at the party) and a "comic" book story of his trip to the zoo with Adek and Fadhil (his BFFs!).

Jeff and I feel like we are constantly keeping up with him and his amazing progress lately that we realise now how much we have underestimated him all this time. Also, how much we have really forgotten what it was like with him before because it is just so easy to take for granted now how I am able to just talk to him about anything and not only would he be able to understand what I'm saying but he can actually contribute something back to the conversation.

With the language in place, Kerri tells me the next steps for us to drill in him is to use the language appropriately, especially in social settings. All of us can tell that Raiyan has been developing a conscience socially and it really seems like he wants to have friends to talk to and play with but realising that sometimes he does get ignored by them (especially during times when he goes on and on about dinasours and animals!). Nonetheless, on the whole I am very pleased with Raiyan's progress when it comes to mixing together with his classmates as I do see him interacting and having some level of a relationship with at least 3 other kids in his class, so that's very nice for me to see.

To help improve him more in this area, Kerri is planning to have more social skills groups during the summer break where Raiyan and the other children with autism can mix with typical children so as it can be "practice" time for them, and especially for Raiyan who will undoubtedly be facing more social challenges when he goes up to Year 2 next year. **Any parent who are reading this and would like to volunteer their typical child to be part of these social skills groups is MORE than welcome to contact me and we would really appreciate to have your child around. I should say however that it would be helpful if they can speak English as you know these kids are being mainly taught to speak in English.

Now with that happy reporting, I just have to find the pweshes time to upload the many pics I've taken of Raiyan's creativity and progress! Look out for the dinasour board game, the birthday invite and pics of Raiyan and his friends at school to be posted up very soon! Promise!

Reasonings

This is really, really tricky for Raiyan to say the least. His progress in this past year had us appreciate any answer he would give us, regardless if it is correct or not, because this means that he can actually respond back to us and this could hopefully be the early seeds of conversation for him to have with others.

But along the way, just getting answers from him has made him just be comfortable to give us that. NOW, we are trying to reason with him as to WHY he is giving the answer … and it has been short of a nightmare trying to get this out of him!

I really do feel for Raiyan though. There must be so many things going on his head, especially after all he has computed this past year and I am sure he thinks that the fact that he’s answering the question right is good enough already so why do we have to insist he explain why he came up with the answer? Well this is important for social situations when he has to understand what’s going on around him purely from just looking and observing and then it will be help him when he has to explain and describe the situation he’s observed.

To illustrate, we would show a picture of a girl washing the dishes and we would ask him “what is she doing”. Of course Raiyan can easily answer “she washing the dishes.” The toughie is when we go on and ask him “how can you tell that she’s washing the dishes?” See, I KNOW he KNOWS that she’s washing the dishes but I just want him to tell us HOW he knows by describing the fact that she’s at a sink, and there are soap and water and she’s scrubbing the dishes.

But what Raiyan comes up with instead:

“She washing dishes because they dirty”
“She tired from washing dishes”
“when you finish eating the dishes are dirty”

This is clearly a case where he sees the forest and not the tree because even though all of the things he is saying is true and sort of relates to what I am asking, but simply put, it is NOT directly giving me the simple answer that I am looking for.

As well this morning, I tried to do this exercise with him just through talking (no pictures) and I was telling him how baby Addin wee-wee on the bed last night. He adorably said “Uh-Oh!” (which shows that he understands it’s a “whoopsie” situation so the fact that he recognizes the context of the situation is very good!).

And then I asked him “HOW can we tell if Addin wee-wee in the bed?” Simple answer would be” Because the bed and Addin’s pants were wet” right?

But this is Raiyan:
“When Addin wee-wee, auntie nor take him out of bed and change his pants”

What do I do?!! Uwaaaaa… It’s so hard for me too because of course I appreciate the answer he is still giving… but sigh….. I guess this is something we really need to work on…

I briefly whined to Jo who quickly brushed it off and said to not worry about it and that he WILL get there. And then I remember all of the times before when I would really worry about something Raiyan can’t do and Alhamdulillah, sooner or later he DOES get it! Here’s hoping he can start reasoning sooner rather than later!

Golden Points

Jo first told me about the token system she's been doing with Raiyan and she also asked Dr. Lee during the seminar if it’s an acceptable thing to do. We were glad to hear that he did think that it is useful as a positive reinforcer for desirable behavior that we would seek from Raiyan.

Last Sunday at the bookstore, Raiyan really wanted to buy this amazing Little Einsteins Activity book, equipped with more than 1000 animal fact files and little “microfilm” pictures. Of course I was reluctant to do so since I’ve already bought him a bunch of stuff from my Singapore trip. Usually, Raiyan is actually fine with putting the book back on the shelf (this was once an actual “routine”!) but in this case he was resistant and he said “but somebody else might buy it!”. So just to be safe, we asked the cashier if there are many in stock and unfortunately the one on display is the only one left. Empathizing with Raiyan’s fear, we decided to just buy it for now but he can only have it once he has earned 50 Golden Points (similar to the token system Jo has been doing). Naturally, just hearing us planning to buy it was good enough for Raiyan so he seamlessly agreed to the plan.

So it’s been 3 days and 11 points into the plan and it’s quite good actually! Of course I didn’t hesitate to use it to entice him to finish his meals faster AND staying put at the dining table(which he did!) and I actually had it in my mind to do that at every mealtime. Raiyan thought so too until Babah stepped in and said that it’ll be too easy if we were to give it at every mealtime and there’s the risk of it becoming a routine too. Unfortunately Raiyan only found out about this change of plans AFTER he finished his dinner so when he ran to me and exclaimed “I finished my dinner! Can I get my 3 points now?” I had to break the sad fact to him and he let out a teeny sob “Aaawww..” together with a long face. I felt so sorry for him and nearly gave in but felt I didn’t want to overstep Babah so instead I asked him if he wants a banana instead and Raiyan immediately perked up and said YES and forgot all about the points he didn’t get! (We really forget how easy it is to make these kids happy sometimes!).

I keep track of his golden points by drawing stars on the whiteboard and keeping count of them with the BIG 50 at the bottom of the board. Raiyan gets so excited whenever we count how many stars he’s got, which at the moment stands at 11. But then he would ALWAYS say thereafter, “But mama, I think 50 is too much!” Heehee..

Also, apart from wanting desirable behavior, I’m also trying to use the points system to help avoid undesirable ones though I do try to keep it a minimum as I don’t like to “punish” him too much. The only thing I’m stressing on now is his articulation of “excuse me” which I know he can say but lately he has been lazy and saying “ku me” instead. I’ve been drilling this in him for the last 2 weeks now and he IS getting much better at it but just to instill it more, I warned him that if I catch him saying “ku me” I will take one point away. Oh you should have seen how sad he was when I did do that just the one time. I brought him to the whiteboard and canceled out one star and he just sat down in front of the board and cried out softly “nooo..”.. I felt so EVIL but the good thing is not only has he NOT said “ku me” ever since but he was even MORE motivated to get his points thereafter! Bless him!

Non Compliance

Having our child not following what we say or do what we tell them is indeed one of the biggest challenges us parents face in raising our children. Usually we would tend to just blame the child for being stubborn, lazy, annoying and basically non-compliant.

However with Raiyan, especially in the early years, the issue of non-compliance never cropped up simply because we never expected him to comply seeing how he wasn’t able to understand what we instructed him to do anyway. And even when he DID seem to understand what it is we wanted, the tantrums that erupted thereafter were just too scary that we would just give in and let him do whatever he wants!

But upon starting ABA with me also learning to how best to communicate our needs and not just for Raiyan to communicate his needs, I discovered that maybe its not necessarily a case of “non-compliance” but more because children generally either do not understand the instruction OR the instruction is just too BIG to follow.

For example, we always like to tell the kids to put away their toys and we get upset when they don’t do it. Then we complain about how lazy they are and we threaten them with punishment if we don’t see them clean up their toys within the next five minutes etc. But what I’ve discovered I can do instead is to tell Raiyan to just put one or two toys in the basket and see if he’s willing to do that. He usually does because it’s a simple, small and straightforward thing to do and after he has done that I load up on the praises and the verbal reinforcements (good job Raiyan! You’re SUCH a good boy for putting your toys away!!) and after that I try to push it further and ask if he wants to put away more toys by asking or rather challenging him by saying “do you think you can put away three more toys in the basket?” and after having so positively reinforced the first time, he would still be motivated to do a bit more simply because he’s already on a roll with it and also since the next task just seems so achievable anyway.

Therefore, whenever you think your child is not “complying” with what you’re telling him or her to do, try giving them the benefit of the doubt that either they don’t actually understand the instruction or if the instruction is just too big and alien-like for them. Break the task down to something they are confident they can achieve and with every little achievement we compliment them and make them feel good about themselves and pretty soon after a series of little broken down tasks, the whole instruction would have been complied with before you know it!

Give us a clue

Part of Raiyan’s programme recently was for Raiyan to tell us why something is what he thinks it is. For example, when shown a picture of a “cowboy” and if Raiyan himself thinks it is a cowboy, he has to tell us why he thinks it is a cowboy, which would be reasons like the boy being on a horse, him wearing a cowboy hat and cowboy boots and with him carrying a lasso. Raiyan slowly learnt that these things are called “clues”.

He ended up getting really keen on doing this as he just loves to get us to guess what he is holding or what it is he likes etc and if we say we don’t know, he will say “Ok I give you a clue! It is round, blue and it bounces!” (A ball!) OR “It has a mouse and cat in it and it begins with the letter T!” (Tom and Jerry!).

This has also proven to be good for reducing our prompts with him because rather than just tell him the answer straight away, we would instead give him clues and wait until he figures it out eventually. Naturally, this is really conducive towards his language development as well.

But most of all, it has proved to be really helpful during those times when we are not completely sure if he knows something but instead what he does is to pretend to know it. What this incredibly cheeky boy like to do is to trick us to telling HIM the answer by asking us to guess when in fact we are just going to feed him the answer by doing that!

For example, when we were about to visit his dear friend Fadhil at the hospital and whilst deciding on what present to buy for him, babah asked Raiyan if he knows what Fadhil likes. At first we can tell that he was just playing “hentam” because he was saying “Dinasours, animals and Tom and Jerry” which we know are the things that HE likes.

But then he said “Oh I know what it is. Come on Babah you know what it is. Guess!”

We probably made like close to 10 guesses and Raiyan kept saying “No.. come on.. you know it..” And even when we kept saying we give up and begged him to tell us the answer, he still insisted that babah knew the answer and so he’s not giving it away!

Around the 11th guess, I started to get suspicious on whether or not he actually knows the answer and perhaps what he was really doing was to trick us into telling him what Fadhil’s favourite thing is because he himself actually has no idea!

But lo and behold, I remembered the “give us a clue” trick and asked him for one and he immediately said “it begins with the letter F and we watched on TV at Adik’s house”. Only then did babah completely remembered “Fireman Sam” which he vaguely remembered Raiyan telling him about them all watching it together during one of the times they were at Adik’s house!

We really can’t ever underestimate this boy or what! :D

$Money Money Money$

We have started to get Raiyan acquainted with MONEY! Oc course following the basic principles of ABA, everything we try to instil needs to be broken down into very small and easy to follow steps so for now we are only familiarising him with 1 cents and 5 cents coins.

Just to make it interesting, we set up a pretend shop where there is a cash register and a box of fake supermarket items that Raiyan would need to purchase from us and we would ask for a certain amount of the coins that he has (which again, only consists of 1 cents and 5 cents coins). Oh and it is also worth to note that to do this, it is vital that the child has a basic knowledge of additions and at least to be able to add numbers that total to an amount not more than 10.

Just to share, this is how we are teaching him the value of money on a step by step basis:

1. First, we would just ask for either 1 cent OR 5 cent. What I tried to do is that with 1 cent coin, I taught him to identify it by it being gold coloured and having a diamond shape on one side whereas the 5 cent coin is silver and has a scorpion like shape on one side (of course it being an animal makes it all easier for Raiyan). So he can buy an apple for 1 cent and he would give me one 1 cent coin and he can buy a carton of milk for 5 cent and he would give me one 5 cent coin. This was relatively straightforward because all he had to do was remember the identity of these 2 coins separately from each other;

2. Once he has familiarised himself with what a 1 cent and a 5 cent coin look like, I tried to move by making him give more than just one coin. Again, using the simplest way, I ask him to give me 2 cents for a piece of bread to which he would give me two pieces of 1 cent coins. And then I would move on to 3 cents, 4 cents and then 5 cents where he would give me three, four and five 1 cent coins respectively.

3. Once he's familiar with that, then I started to make him do the same thing with the 5 cent coins but since we're keeping it simple, that would only make up one configuration which is two 5 cent coins to make 10 cents. This was not as straightforward as per 2. above as it took a while for him to see that ONE 5 cent coin actually makes up 5 units and not just 1. I really had to prompt him for this and in the end it did "seem" like he got the fact that TWO 5 cent coins make up the 10 cents that I asked from him. However, I am still not convinced that this is really mastered so there is definitely a need to revisit this over and over again.

4. You would think I'd stop at that point, seeing how he clearly had difficulties identifying a 5 cent coin to have 5 units as he still saw one coin to have just one unit. Noentheless, I still pushed further and tried to get him to give me 6 cents when he only have five 1 cent coins which would then compel him to give me a combination of one 5 cent coin and one 1 cent coin. OMG, this was such a STRUGGLE to do and I REALLY had to talk through every step of the way that I nearly went crazy! LOL! I would already have the 5 cent coin and the 1 cent coin on my palm and when asked he would STILL tell me that I only have 2 cents! Even after having passed 6 cents and to go on to 7 and 8 cents he was still finding it hard to grasp and his first answer was always (5+1+1) 3 cents and (5+1+1+1 )4 cents!!

I tried to get him to use his fingers by putting up five on one hand and then the 1 cent units on the other which did make it a tad easier but there is no denying that in the end, he reallly, really has to work hard on this.

I'm going to be more creative in terms of giving a better reinforcement for him to concentrate and work harder when doing this (as he kept switching off and gazing halfway through when we were doing it!).

In the bigger picture, I could tell him that it would be useful for him to understand the value of money so he can go to the bookstore and buy something himself if we give him the money beforehand? :-D But for broken down reinforcements, I really need to think of things he would really love to have so that he 'd be more motivated to learn this! With how difficult it seems to be for him, he needs all the motivation he can get!

Dinner Table Battles

I have mentioned before how difficult it is to get Raiyan to finish eating his meals and to stay at the dinner table throughout. I tried to use 30 minutes of TV as a reward for finishing his meals but after a while, its effectiveness receded as we still had to nag him every 5 seconds to put a spoonful into his mouth. Not surprisingly, this was one of the questions we had for Dr. Lee during the 20 minute private consultation we had with him.

Dr. Lee said that the best way (which is also something he sarcastically said is something mothers would just "love") is to make Raiyan know that eating can only happen at the dinner table and hence if he decides to leave, he has to understand that he will not be able to eat anything else until the next meal so he risked getting hungry during that time. Of course me as a mother immediately thought that this would naturally mean if Raiyan leaves the table after just one spoon and if he continues to do this at every meal, he will start getting malnourished! Dr. Lee assured me that from his experience, this tactic would only take up a few days at most as "surprise surprise" the kids would always end up being hungry!! The most important thing is (along with dealing with other behavioural problems) is to be consistent and to follow through.

So we've been trying that with Raiyan and we have persevered through his unremitting whines and excuses.. The usual ones he comes up with is:

R: "I miss Alisha, can I be with her ?"(in the playroom-I know I lack consistency this way as I let Alisha and Addin eat in the playroom before the TV!)
to which I answer : "You can be with Alisha for the rest of the day after you finish your lunch"
R:But why Alisha eat in playroom? I want to eat in the playroom too?"
Me: Alisha is still a baby so it's ok for her to not eat at the dinner table. But when she turns 3, she must eat at the dinner table too ok?"
R: "Okaaayy..sob sob"

So when I did what Dr. Lee advised to and told him that he can leave the dinner table if he doesn't want to eat anymore BUT he cannot eat anything until dinner time, he STILL decided against leaving because I know he wants to eat his chocolate chip cookies right after AND I also think because of this natural compliant nature, he could tell I was upset by making that threat so he just stayed for fear I might get even more upset if he DOES leave! Bless him!

In the end, he still finished his meal and he still complies to eat at the dinner table.. BUT we STILL have to continue nagging him to continue to feed himself everytime we see him switch off and gaze into mid-air! Sigh, somethings just never change BUT we really hope to overcome this one day so long as we are consistent and we persevere!! InsyaAllah Amin!

I'm Back!

Finally, things are starting to wind down and our family is beginning to go back to a "relatively" normal life after such a busy two months since the start of the year.. As for me, I have finally gone on my first work overseas trip which has afforded me with the guilt free opportunity to update this blog of mine. Again, I decided to give a new look to the blog just because fickle me got bored with the old one. Plus, apart from animals, Raiyan also really loves rainbows so I just thought it would be great to have another love of him to be the theme of the blog.

As I said, things have been really hectic lately, especially after the one week seminar we had earlier this month. I just cannot quantify into words how much I learnt from Dr. Douglas Lee that week, both during the seminar and also outside of it (when kiasu hubby and I tried to grab every opportunity to share meals with him!). All in all, what I learnt that week really reinforced what Kerri had taught me in this past year and I was so pleased and humbled to see that the basic methods of ABA has been instilled in me and is something that I can generalise quite easily if I were to compare to what it was like when I first started. However, I was also in awe at how much MORE I can do to help Raiyan and it has gotten me all fired up to start all fresh and be more organised in dealing with Raiyan's behaviour and generalising what is taught during therapy.

So hopefully, I can safely promise to blog more now and specifically I hope to be even more focused on the kind of things I am doing in trying to help Raiyan improve and improve and reach his full potential! The work never stops indeed!!

Busy Busy Busy

I have seriously been feeling so unsettled for not having updated this blog in quite a while. There has just been so many other things floating around that has caught more of my attention and just sorting through and prioritising all of these affairs took up so much of my time that I just lost focus on what to blog here!

Well let me first start on some updates on Raiyan:

1. We’ve shifted his bi-weekly sessions with Kerri from Tuesdays to Fridays now which means I can sit and watch! This is really valuable for me to have on top of being able to watch Jo every Friday afternoons because I can see more clearly how they carry out the programme and how they converse with Raiyan to elicit the appropriate responses from him. Plus it gives an added extra 15 minutes of Raiyan’s time with Kerri since before this, the last 15 minutes was the time when Kerri and I sat down to go through the bi-weekly programme together and obviously that’s not necessary anymore now that I watch the programme being carried out myself;

2. Because of the recent floodings and power cuts, Raiyan was away from school for almost a week (counting Chinese New Year on Monday). Needless to say, he was BORED, restless and was extra whiney last week. I felt really sorry for him but at the same time, he was really beginning to push our buttons with his persistent demands. After the number of times this has specifically happened in the past, I’ve grown to dread school holidays unless we use the time to take Raiyan somewhere to alleviate his boredom. But that’s just him! Other children I can imagine would probably love school holidays ( I know I did!) but with Raiyan, he becomes this cranky, stroppy brat instead! Not long after starting school last Tuesday, he’s back to his cheeky and lovable self again! Alhamdulillah!

3. Raiyan actually sat for his first ever test on Tuesday morning. It was a literacy test where he had to recount and write down a story consisting of about 6-7 sentences that was told to him beforehand and he would be tested on spelling, punctuation and the correct uses of capital (or as Raiyan calls it “catipal letters”) and small letters. I was pretty nervous about the idea of him doing an actual test and we all thought it would be useful if Ayesha (who has been up until last week shadowing him for 2 hours a day at school) be present as back up. She did prove to be handy as Raiyan at first refused to do it. As I’ve explained before, Raiyan finds trouble in following through his work not because he can’t do it but simply because he can’t be bothered to. I guess you could argue it being similar to simple laziness but as Jo explained it, if its an activity that he has already done before and does not see the point behind doing it again, he just won’t. That is quite understandable as one can imagine getting annoyed with having to do mundane things that one already knows how to do and at the same time see no purpose in doing it again. But unfortunately, that’s what the journey of learning in school is about isn’t it? He did in the end finish the paper upon some gentle coaxing from Ayesha. I was already so pleased to hear that and would be thankful to find out if he just passed but Jo actually said after scheming through the papers that she’s confident he can be in the top 3 of the class! Haha! Will confirm his “results” soon!”

4. Outside the therapy programme and apart from that 5 day no school period, Raiyan has really been a pure blessing at home these days. He obediently watches only 3*30 minutes of TV a day (which is a reward for eating his meals) and will switch the TV off everytime his 30 minute alarm on the timer rings. Now he actually needs reminders to watch his promised TV especially now that I don’t go back for lunch and without me there, it just doesn’t occur to him that he can ask the maids to switch it on (well I guess the routine is to ask me only- sigh, bless the need for routine sometimes huh!). He has easily been finishing his meals with minimum cajoling (well the TV reward was a lot of help!) . He’s been actively engaged with Alisha and Addin and looks to be genuinely in complete love with the both of them. Sure they still fight when not wanting to share things but which siblings don’t right?

But what’s best is his natural language getting better and better by the day. He still gets stuck when I ask him a specific and unfamiliar question as he finds it very difficult to answer as either he doesn’t understand my question completely OR he has this extreme fear of giving a wrong answer. Hopefully within time, he will learn that when talking about his feelings or stating an opinion, there never is a right or wrong answer right?

Anyway, to share some his adorable quips, just this morning in the car on the way to school he adorably exclaimed “Look! (Pointing to outside the car) I saw 2 dogs between the trees. Yes, I did, I did saw 2 dogs and they are between the trees” (he has this thing where he repeats everything he says at least twice. Not unlike his bibiran mana I think). Then Babah asked “Are they wet Raiyan, because of the rain?” And Raiyan replied “Yes they are. But it’s okaaayy. They just shake their faces and they will become dry again!”

Now moving on to the main reason as to why everything just seems to be all over the place at the moment. Learning Ladders Society has been closely working with the Special Education Unit of the Ministry of Education in organising a National Seminar on Behavioural Interventionand Autism to be held at the ICC NEXT WEEK on 2nd- 5th February 2009. To be honest my role hasn’t exactly been that monumental but yet I’m finding it so hard to catch a break! It’s probably due to the exasperated feel I have of not having my husband around as he is LITERALLY running all around town getting all sorts of things done. As to my role specifically, well I did appear briefly with Ms Jennie Ong of SEU, MOE on Rampai Pagi last Friday morning to promote word on the seminar (I was a last minute stand-in Linda was unable to make it due to problems related to powercuts. You can just imagine the distress of her kids right?). And for this Saturday and hopefully next Wednesday too, I will be contributing some articles on autism to Borneo Bulletin. Doesn’t seem much BUT it’s still something if you think of how I had to practise my script for the interview whilst having the cold AND how tricky and different writing a whole newspaper article is from blogging! With the blog sometimes I just allow myself to blab and ramble on but of course it doesn’t feel right to do the same in the case of the newspaper right? On that note, one of the articles is basically a summary of our family’s journey since Raiyan’s diagnosis and whilst writing it, I realised how much I’ve blocked out all of those troubling early years because it’s really just so heartbreaking. And then when I had to dig them all out for this article, I just did not expect how crushed I would feel right after. Looking back, those times were seriously a really rough period and remembering them just makes me appreciate where we are now so much more.

Oh, I digress. I was talking about the seminar and somehow it still went back to me! (hah! Maybe that’s why I’m not playing a bigger role in the whole organisation of the seminar!). Anyway, this National Seminar is going to be HUGE as we are expected to have almost 600 invited special needs teachers, teachers with autistic children and parents attending but what’s absolutely exhilarating for our society is that it’s ALL going to be about Applied Behaviour Analysis (ABA).

FINALLY, we hope others can start educating themselves on this amazing type of therapy that we do. FINALLY, we hope others can start seeing the amazing progress children on ABA can make. FINALLY, we hope others see and understand what I and the society have been yapping about all this time.

The expert consultant that will be speaking during this 4 day seminar is Dr Douglas Lee of Behavioural Solutions Inc who has a vast experience in the field of autism and behavioural intervention. He is also affiliated with British Columbia University which according to our Education Ministry is actually a very respectable university. Hence we are completely honoured and humbled that he is actually coming to Brunei to deliver various presentations during the 4 days.

During his stay, Learning Ladders parents are also each given the golden opportunity to have a 15 minute private consultation with him to ask him any question under the sun about our children and autism in general.

I will try to update as much as I can next week (I’d LOVE to do some kind of “live blogging” haha) but I can’t promise how “unbusy” I’ll be as I am manning the registration desk for the whole 4 days. But because I am absolutely excited for this golden chance of a learning experience, I hope I’d be as enthusiastic to share it here.

WATCH THIS SPACE!

PS.: Look out for the newspaper article! Hopefully it’ll be out tomorrow entitled “Our Life With Autism”

The Journey Continues

At the dawn of the New Year, I was at one point contemplating changing the direction of this blog to focus more on just the therapy, the society and our relationship with the school and not so much on personal stories about Raiyan (you know entries like “Bossy Boy” and “Chubby”). Instead I wanted to share such stories in the “Pweshes Diaries” blog which just generally talks about my children’s antics.

It was really difficult to put into words how I felt and especially doing so with an attempt to avoid offending anyone. But simply put, Raiyan is such a different boy now after one year of therapy and undoubtedly one who possesses a distinctively genuine personality that on some level, I find it unfair, for him and for others; for me to be writing about him purely in the context of his autism within this autism blog.

Don’t get me wrong, I still believe Raiyan is autistic and that will always stay with him but if I haven’t made myself clear before, I am at the point where I see Raiyan being so much more and in terms of the autism, I see it more as a gift as opposed to a burden. Though I feel like this now, I am by no means discounting or dismissing the difficulties autism has caused for Raiyan in the past; and for other children and their families who are still facing them. Alhamdulillah I am eternally grateful that our family are blessed with where we are now and to also be at a place where we have adapted to the autism by constantly making the effort to talk to Raiyan (and everyone in the house for that matter) in a certain ABA way-clear, broken down, direct and mutually understanding.

Of course there are difficulties still present, such as the lack of social cues, inability to fully express himself and the tendency towards utter egocentricity. These are admittedly ongoing challenges we have to deal with but when put into perspective with past challenges like complete lack of communication, obsessions, rigid routines, resistance to new things and of course the notorious tantrums, what our family has to deal with now is definitely not as nerve-wrecking as it was before. InsyaAllah it does seem like Raiyan is able to successfully manage these challenges seeing how they have not surfaced in a very long time. What we see now is him truly blossoming and quickly catching up with his peers that many who meet him for the first time thinks he’s indistinguishable. Now he independently comes up with the cutest quips that I, just like any other parent, loves to share on this blog just because it’s something coming out of my child as opposed to it being something related to autism.

The situation in Brunei is still very tricky in that not only is awareness on autism limited, the notion that these children can learn to overcome their autistic traits is practically unheard of. When I personally tell people that Raiyan is autistic, they immediately think they have to feel sorry for me. Though I completely do not blame them to feel this way as I know there are many other families out there who still has to constantly face the daunting side of autism in their children, I still can’t help feeling slightly cheated upon receiving the pitiful looks because if they were to really know Raiyan NOW, they would be surprised to see that we actually don’t really deserve the sympathy. This is especially so if you were to see his incredible report card of last term! But nevertheless, I accept that a lot of autism families in Brunei are still facing uphill struggles on a daily basis and urgent attention from the authorities is seriously needed. That’s why I was scared I might then be transmitting mixed messages when I’m talking about Raiyan in such an amazingly positive way.

So what do I do? Seeing how there is still much awareness needed for autism and its diagnosis, prognosis and treatment, do I want to continue to write about Raiyan that makes him seemingly “normal”? I mean it’s logical for one to conclude from reading the blog that autism is not such a big deal seeing how Raiyan is coping with it so well. I reiterate, I really do not want to discount the challenges other families that I know, who still needs to be paid more attention and as horrible it is to accept, it is easier to obtain this attention when a disturbing or depressing image is portrayed.

At the same time, I don’t want EVERYTHING Raiyan does to be construed as an autistic “thing” especially seeing how the complete attachment of that “label” has proved to be such a unnecessary nuisance for him. I mean some of the adorable things he does and say can very well be separate and independent from the autism. That’s why I thought I should share “those” stories on a non-autism blog rather than here. With this in mind, I was almost convinced that this is the way I should proceed with the blog.

However, the negative consequences of autism in Brunei still being perceived as something depressing and "not wished upon anyone" lingers on in my mind. I know of parents who insist to stay in denial about their child’s condition even though the symptoms are obvious and not getting any better. I know of parents who choose to not take their children out because they can’t bear the attention they draw when being out in public. I know of parents who doesn’t even talk about their child nor share stories about them believing it’s taboo to do so. I also know of parents who proudly talk about their child’s conditions and take him out in public even though he is still non-verbal and relatively hard to control, only to be shot patronizing looks from others. This is when I realized that if I stop talking about Raiyan as he is, I will continue to feed into this unfortunate stereotype and this I fear may lead to MORE parents choosing to be in denial about their child that they may potentially miss the boat for early intervention. Far worse, I fear this may lead to MORE parents feeling alienated from the rest of society resulting in built up resentment and frustration simply because they had to suppress or feel the need to deny something that makes up such an intrinsic part of their lives.

So I decided to maintain the blog as it is. I have to trust that others remember that autism is a spectrum and it would seem that Raiyan is on the mild end and there are others on the spectrum who still require more urgent and close attention. I also have to trust that others FULLY read this blog to see that autism IS still a big deal and Raiyan would not be where he is had he not received the appropriate treatment this past year.

I know for now Raiyan may not speak for the majority of autistic children in Brunei and I don’t expect for people to think he that he is. But that’s not going to stop me from continuing to hope to reach out to other parents on the spectrum who does feel they can relate or even aspire to want to relate. In line with my pweshes philosophy, I can only continue to hope and pray that in time, Raiyan and other children like him can not only help to inspire other families to accept the autism and work on it as early on as possible and insyaAllah along the way they too will be blessed with the opportunity to discover its beautiful side that I see today. And once you’re there, I challenge you to not want to share it too. :D

2009- Bidding adieu to troubled thoughts

This past year I have learnt so much and Alhamdulillah some lingering insecurities about my knowledge on autism and how to handle it have been replaced with a renewed confidence in my own personal beliefs in how to best raise Raiyan and help him handle his autism.

Even though admittedly I’ve always been drawn to debates like how a driver finds himself forced to look at roadkill, I’ve now pretty much abandoned the possibility of any common ground amongst the various camps in the autism community because autism is just too wide an issue comprising of thousands of nuances in severity, symptoms, reactions to treatments, sensitivities and beliefs.

But just for closure’s sake, I am going to state right here what I have learnt to accept:

1. I don’t believe vaccines cause autism but I do think that there are some children that have some kind of pre-disposed gene that may be made worse by vaccines and this may lead to more obvious autistic traits. I believe Raiyan was born autistic but because he was 7 weeks premature, his immune system was probably weaker and environmental factors may have affected him more and made his autistic traits worse.
   

2. I fully believe in the powers of early intervention and thus parents rather than continuously living in fear and denial over whether or not their child is autistic or not, should just seek help and start their research into the many types of available treatment as early on as they can.
   

3. I fully believe in the powers of ABA or any behaviour modification therapy as the basis and the mechanism to treat the child-whether it’s to treat obsessions, repetitive behaviours, speech, sensory issues, motor skills issues and social skills. I believe that Raiyan worked hard and was continuously motivated not only by the rewards he was promised but by his own successes at the end of it. Of course, the first few weeks or months or even years would be hard but we always have to picture the end goal and providing no verbal and physical abuse are involved, a parent should not have to be guilty about subjecting their child to repeated amounts of teachings and disciplining because we are only doing this to help our children in the future. Susah sekarang, senang kemudian kan..
   

4. I would prefer more energy being exerted to focus on finding appropriate treatment and fighting for governments to provide treatment both medically and educationally rather than spending resources and energy on finding a cause and cure.
   

5. Autism cannot be cured. This is in the sense that you can’t just turn an autistic individual to become “non-autistic”. The autistic way of thinking will always be present and I have always believed that’s what makes these individuals so special that if you even begin to understand it, you would be quick to think how ludicrous it is for anyone to search for a cure to exterminate it.
   

6. Autism however can be recovered and I do believe some parents who have said their child has “lost the diagnosis.” When Raiyan was diagnosed, he scored under average for simple things like knowing the purpose of objects, describing the attributes of things and recognizing basic emotionos because unlike typical children, those things did not come naturally to him. But now, he is able to do them because he has been “taught” it through the therapy. Along with constant teachings of many other things and Alhamdulillah with Raiyan being able to generalize what has been taught to him, Kerri thinks he’s on the way to losing his diagnosis and is quickly catching up with his peers! Having said that, traits like difficulty with social cognition and sticking to rules of conversation would probably always stay and would be something that Raiyan would need to work on for life. Those are the autistic aspects that will probably stay with him but that’s OKAY. Having those issues do not preclude him from leading an independent life. When I talk of Raiyan improving, progressing and even now I am more comfortable with saying, RECOVERING, I am looking towards him growing up to be able to live independently and adapting to situations whilst being able to "handle" his autism along the way. Because I know Raiyan is on the higher end of the spectrum and with how much he has succeeded in the past year alone, why shouldn’t I have such dreams?

I am not writing all this to convince others to share my points of view. More than anything, it serves as a reminder to ME as to how I really feel deep down about all this because I still find myself getting easily swayed after reading the countless amount of autism literature out there.

I need to start focusing on what I personally believe in and not waste further time deliberating about why others do this or that or say this or that. I’m also tired of fearing how others may interpret my blog because I know not all autism parents would agree with me and would still find fault with what I’m doing with Raiyan. But at least, I have tried to make clear my positions on the above contentious issues.

What I would still love to do is find other parents, even if it's just a handful, that are in the same boat as me who-

• strive to keep the picture of autism a positive one;
• accepts that these kids are hard work and require constant dedication and attention;
• understands that no parent is in any position to judge what another parent does;
• do not resort to name-calling or attacking language;
• are not guilty or insecure about their actions over their child for fear of being judged as being a bad parent;
• feel blessed with seeing their children’s progress; and
• celebrates every little achievement (that incidentally would help make it easier to put aside any negative and attacking comments as nothing more than fluff!)

Wishing all pweshes autism families out there a great and fruitful year ahead!! Amin!

It could also be a....

Raiyan’s present programme is seeing him traverse into the world of social language that requires more imagination and lateral thinking so you can imagine it’s been really challenging. So much so that Jo the great has specifically asked for help in generalizing one aspect of the programme- which is making Raiyan utilize every inch of his imagination abilities and think of what an item (particularly small items) can be apart from what it really is. Before this, I’ve always thought he was quite good at this because he always pretended a sofa cushion was a slide and a box as a house etc, but as you can see these are BIG items that he can physically do something on. But when it came to small items, Jo said he found it really difficult to see them more than what they really are.

But knowing how intelligent Raiyan is it wasn’t too long before he started to get the concept of it but it’s still something that we need to generalize more and more. InsyaAllah, this will eventually help him in social situations in the future because his mind won’t be restricted to just thinking literally all the time.

So this morning, I asked him what else this piece of paper could be. It took some hesitation that lasted 2 minutes but soon after, he was on a roll!

It could be a bird's wing..

He rolled it up to become a telescope..

It could be a bridge

It could be a little girl's hair!

He just blew me away because even I didn’t think of some of what he said! Haha! And when I gave him this block of cheese, I was FLABBERGASTED at what he came up with:

1. A piece of pizza or a cake;
2. A top;
3. A bird’s beak; and
4. A tornado

!!!!.. That’s four more than what I can think of! Maybe it’s ME that has the imagination problem!!!

Overworked

This is poor Raiyan asleep halfway through us doing the listening activity together. In all fairness to him, he just had a 2 hour ABA session with Jo in the late morning and here I was still trying to make him do more stuff.. As you can see on the drawing, he still complied and did what I told him albeit yawning away.. and then before I know it, he rested his head for a split second and he was asleep!

It's times like these that my heart just painfully melts cause I love him so so much.... Thanks for being a dream son Raiyan and I'm sooo proud of you!