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!

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!

Bye Bye Tantrums

efore he was able to communicate his needs appropriately, Raiyan was infamous for his extremely loud cries. One of my girlfriends also commented how his loud voice was so unique and how it seemed to have different layers and facets too it (like a soprano layer, a bass layer, a tenor layer and a baritone layer if you care to imagine!). It was so loud that we always gave in to his needs as we just couldn’t find a way to make him quite down otherwise. If we happen to be outside and in public the only solution was to just carry him and whisk him back to the car.

Apart from the pain of having to tolerate the volume of his screams, it was far more distressing to feel helpless and not know exactly why he was throwing his fits in the first place. Often, we had to play the guessing game, the elimination game and we had gotten really good with inferences and assumptions by the end of it.

The golden lesson we learnt when he was first diagnosed and when he started his therapy was that we weren’t supposed to pay attention to the tantrums and better still, we completely ignored it. You can imagine Raiyan’s screams practically filled the house non-stop for the first two weeks or so when we employed this new trick. Alhamdulillah after persevering through, his tantrums indeed lessened within time as Raiyan soon realized that he wasn’t getting any reaction out of them. I guess it must have been strange for others to see when we did this in public since it is a natural instinct for parents to talk and console their child to try and make them feel better. As careless and evil as we looked, our faith in the technique grew more and more within time as Raiyan was seen to gradually move away from the excruciatingly loud screams to now a barely heard inside sob accompanied by whines and moans specifically telling us what it is he wants.

He’s been tantrum free for quite a while now that I think we’ve started to take it for granted. So it was a proud moment for Jeff yesterday when he was negotiating with Raiyan about something with another autism parent watching. It was during the social skills group session and Raiyan was instead too busy playing with his dinasours. This was clearly contrary to the purpose of the session so Jeff instructed Raiyan to put the dinasours away – an added challenge was the fact that he was already halfway playing with them (children with autism finds it really hard to suddenly stop something they are in the midst of doing and to shift to another activitiy. That’s why countdowns and advance warnings are very helpful for them). The other parent observed the whole time Jeff was telling Raiyan to pack up his dinasours which Raiyan eventually reluctantly complied with but not without his typical “pathetic” (as Jo and I call it! Hehe!) whines and sobs. And she straight after told Jeff of how impressed she was with Raiyan not really put ting up a protest and how there wasn’t a single shout or scream heard. Even in school, Jo often tells me how a number of teachers found it so hard to believe that Raiyan is the same boy from last year that they remember to be the one rolling around on the library floor screaming just because he couldn’t get to read his animals book.

I am so grateful for all this positive feedback not only because it reminds me of how much he has achieved as I admit, it’s quite easy to take for granted and and to actually think that he has always been like this! It’s also a wonderful thing because we are proving to others that it is possible for tantrums to be substantially reduced or even stopped. I can’t be sure if it was down to the consistent technique that we practiced or if it’s just due to Raiyan being generally obedient in nature. Nonetheless, I am so grateful and proud when I watch old home videos and clearly see what a “far cry” those chaotic tantrum moments were where we had no choice but to just give in to his needs, however irrational and inconvenient they were.

Raiyan and friends

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

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

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

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

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

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

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

- To make eye contact

- To have quiet hand and feet

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

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

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

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

Breaking an autism myth

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

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

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

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

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

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

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

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!

Birthday Parties

I used to really dread birthday parties. We started going to them when Raiyan was around 2 and a half years and these were parties of my friends’ children meaning Raiyan wouldn’t be particularly be familiar with the birthday kid (as opposed to a cousin or a classmate from school).

Even at that early age when I wasn’t supposed to be overly worrying about his development, I remember still detecting some differences in Raiyan already. I couldn’t help noticing his obvious disinterest in all of the other children, how he blatantly ignored others greeting him and trying to strike up conversations with him, how he was terrified of the birthday cake and would just look at it from afar and how he would run and hide when it was time for everyone to crowd around the birthday kid as the idea of too many people at one place just daunted him. However, even with those concerns in mind, I always managed to convince myself that he was behaving the way he did because he simply felt estranged with everybody in the room and it was just like him to be uncomfortable with new people he meets.

When he was at Stella Kindy, we started to receive birthday party invites which luckily were held at the school so in that sense we thought it wouldn’t be too much of a new environment for Raiyan since it’s held in an environment he is already familiar with. I completely accepted from the start the fact that Raiyan was oblivious to all of the invitations (and for all I know even the birthday parties too since I wasn’t physically there to see) because on every occasion that we got one, it was always me fishing it out of his bag as opposed to him giving it to me. I would also always go out to choose a birthday present without bothering to get any input from Raiyan on what I should get. I did this because I KNOW Raiyan was completely oblivious to the existence of his classmates anyway and I KNOW he did not understand the basic concept of what a birthday party is too.

During his first term at ISB (and a month before his diagnosis), he attended a birthday party at Jungle Gym which we were keen to let him go to since we knew he enjoyed going to the place. Unfortunately pweshes babah and I could not go so we asked my brother to go instead. I remembered curiously asking my brother upon their return if Raiyan played together with any of the other kids as at this stage I was beginning to feel really conscious about his lack of friends. Of course my brother replied no to but at the same time comforted me by saying that it was probably because he was too busy making full use of the playground equipment there. Ironically, Kerri Wilson was also that party (who I did not know of then) and it was then and there that (as she later on informed me) she quickly noticed there was something not quite right about Raiyan.

Naturally then I had begun to feel really anxious about birthday parties and would try to avoid going and just have pweshes babah go instead. As Raiyan got older, I realize other children got older too so birthday parties now wouldn’t just be a case of showing your face and eating cake. Especially since the birthday parties are attended by children belonging from the same class, it is expected that they will do things together and hence it will just be that much more obvious when Raiyan is on his own separated from the rest.

BUT you’ll be glad to read ahead of how things have changed so much for the better now. It was admittedly a gradual transition throughout the year that I didn’t personally play witness to since it was pweshes babah who had accompanied him to all of the birthday parties in this last year, so any developments are those that have been relayed by him to me. But nonetheless, Raiyan has definitely blossomed.

Last Saturday was Raiyan’s classmate Nadiya’s 6th birthday party held at her house and this was no ordinary party! In fact, it consisted of a series of structured games emceed by none other than our celebrity deejay of Brunei, Jenny Malai Ali! And it was then that it really hit pweshes babah (as what he told me after the party) of how far Raiyan has come. Not only was Raiyan mixing in and talking with all his friends, he really tried his best to follow the instructions given during the series of games. Even at times when he didn’t seem to understand, instead of avoiding the situation like he previously would, he instinctively followed or copied whatever his peers were doing! Apart from one activity where he had to suck marbles using a straw (which he naturally has difficulties with because of his dyspraxia/weak jaw motor skills), Raiyan was proud to report to me that he did well in all of the other games and managed to get 3 prizes!

Alhamdulillah upon hearing that and also together with all the happy social stories fed to me by Jo from school, I am more confident that Raiyan will further improve in this sticky area and I am also more re-assured that other children would probably give him that chance to prove himself despite thinking him to be so different when they first meet him.

So confident am I that I’ve already started planning the massive birthday party celebration for Raiyan’s upcoming birthday in June! Contrary to before, I have already asked for Raiyan’s input on what the theme should be (surprisingly Dinasours and not animals!) and who he wanted to invite (so far he has independently told me Fadhil, Haziqah, Jian Rong and David who I’ve noticed have been the 4 consistent close friends he’s had for a while now. Ps.: something amusing happened with his “relationship” with Anna which I will elaborate in a future post!).

Our family is of course mighty excited for this event because not only will we able to SEE how much Raiyan has improved socially but it will also be the best opportunity for us all to celebrate all of Raiyan’s achievements this past year – nobody can deny that Raiyan deserves the party of a lifetime!

Visit to the Fish Market

Raiyan came along to the Jerudong wet market this morning (and Alisha too! hehe nothing like menyakaikan drg awal2!) and not only was Raiyan really good for getting over his fear of walking on wet surfaces, he thoroughly enjoyed himself going round the stalls and identifying the types of fishes he recognises from his animal books!

Of course I couldn't help being conscious of his labeling being only in English and the people manning the stores are telling him what they are called in Malay (Raiyan: "Tangeeree?") but at the same time maybe I was more conscious of myself as I was clueless of what half of the fishes are called anyway!

Apparently, these long fishes in the basket are "pikes"...

The most pweshes part was Raiyan singing out loudly to himself (while we were waiting for our fishes to be cleaned),

"1,2,3,4,5.. once I caught a fish alive..
6,7,8,9,10 then I let him go again..
why did you let him go.. because he bit my finger so..
which finger did it bite.. the little finger on the right!

We just couldn't help giggling listening to him and couldn't help but notice others were smiling too! So Cute!!:-D

Out of the Box

A known trait of autism is the relative lack of imagination and this rang true with Raiyan, as everything he knows and thereupon communicates are derived only from things he himself has seen, observed and learnt and not from what he has thought of himself. The rigidity trait would often worsen this lack of imagination as even if we try to "teach" him to imagine and free himself from what he is only familiar with, his resistance to change would always get in the way of him even attempting to think of a different picture, let alone an "imaginary" one.

Raiyan is also a very visual person which is why flash cards have worked wonders for him and his language but once you take away the flash cards, then it becomes a whole new battle altogether!

But slowly over the last year, we have seen Raiyan beginning to overcome the need to stick to things "as they are" and also we've seen his imagination starting to flourish, such as:

- During our Singapore trip and right after visiting the zoo, he himself changed the lyrics to "Old MacDonald" to go "Raiyan went to Singapore Zoo, e-i-e-i-o. And on that zoo, he saw an elephant, e-i-e-io. With a trunk trunk here and a trunk trunk there, here trunk, there trunk, everywhere trunk trunk... etc";

-Instead of just thinking and articulating just one verb connected to one noun, such as kick the ball, sit on chair, he can now easily say other verbs such as, bounce/throw the ball and move/sleep on chair. This is also in line with my earlier post on how we gave him a small item and he has to think of different ways to interpret it;

-He's correcting us less when we steer away from the usual course of a familiar story whereas before he would just NOT be able to accept it and he would insist we tell the story as how he's used to hearing it;

-We've been going through flash cards with simple pictures and a "speech bubble" on it and he is supposed to think of what is being said. For example, there is a picture of a barber and a girl with really long hair and Raiyan is supposed to "imagine" what is being said. His visual and literal mind would immediately just say "the barber says "I'm going to cut your hair" and the girl says "Please cut my hair." (zzzz boring right?). But NOW, (and because he just finished reading Rapunzel) he actually said with a giggle "the barber says "Hey! You look like Rapunzel!"

-Instead of just piling up building blocks on top of another, he has started to actually make them into functional shapes, such as a rowboat, a helicopter, an airplane, a car- and all of these independently too! Look at him proudly showing them off!

I accept the possibiliy of some parents reading this and wondering what's the big deal with all the instances I have described but trust me, it means a whole LOT to us. We really feel that it is important for Raiyan in this early stage to train himself to start thinking outside the box (as they say!) and hopefully open himself up to new and endless possibilities!

Which is why I'm feeling exhilarated with what happened this morning. See, we were doing this colouring activity last night and even with this one below, he kept asking me in the beginning, what colour is a diplodocus and what colour a torosaurus was etc. He even wanted to look for a dinasour book for reference! But I told him that it's okay, there is no right and wrong colour- just use your imagination and colour them with whatever colour you want! Which he did! How cute is the pink and green ankylosaurus btw?!

So I left him to finish that off last night along with more activities at the back of the page (for him to get 2 golden points!). But this morning in the car and on the way to school, I saw that he didn't do the last part:

Of course Raiyan just said "I don't know how to do it!". Clearly, being the visual person that he is, this was something that I needed to coach him on. At first even I wasn't so sure if he was able to do this. But I tried and asked him to close his eyes and imagine all the scenarios above and tell me what colours he sees. And he answered:

a rain storm: Grey

a beautiful sunset: Pink

a flower garden: Green for the grass and multicoloured for the flowers

a forest fire: Orange

your favourite ice cream sundae: chocolate brown

your favourite holiday: multicoloured. (I wanted him to be more specific and asked him what is his favourite holiday which of course is the ZOO so of course there are many colours in the zoo!)

a walk in the woods in the autumn: Orange

a farm: at this point, he was being more descriptive than just "multicoloured" and he answered red for barn, black and white for cow, pink for pig, green for grass and white for sheep!

a jungle: brown for trees, green for leaves and green for grass

a parade: red, blue and yellow just like in a circus!

Here's hoping for more progress in the future! Amin!

Being Social

As some of my followers would know by now, one of my biggest worries is the idea of Raiyan not mixing in well in class or when being around other kids in general. This concern was especially heightened when he had such a rocky start to the school year with there being complaints of his loud voice and his resistance to turn taking and sharing.

So it is no surprise that ever since then, we have been going on overdrive trying to instill in him one social skill rule after another. Every time he does something that I would perceive as rude or socially unacceptable, I would drill it in him to not do that again and if he doesn’t do something that he should be doing, like not responding to others’ questions, I would incessantly remind him to look at the person and then answer the question.

All of us around him, including Kerri and Jo gets kinda edgy over this that you can practically see the nerves on our faces every time somebody new asks Raiyan a question as we are just waiting with utter anxiousness for his response! Which is why I still laugh at one moment during our Hari Raya open house when Jeff’s boss was asking Raiyan his name, and there was Kerri and Jo on the other side of the room stopping cold in the middle of eating, anticipating Raiyan’s response and as soon as he said “Raiyan” they BOTH just exclaimed “good boy!” LOL!

However, I was recently reading up on social skills in the “Work in Progress” book and learnt that the best way for these children to pick up natural social language and incidentally social “rules” is through mixing in with their peers and not so much learning it from adults. It’s because children do have this innate desire to please their friends much more than their parents or teachers. Furthermore, the “natural” social language amongst kids are clearly so different from the “natural” social language of adults.

And then it hit me that it may not be such a good idea for me to go TOO overdrive with teaching him social language and rote teaching social rules because at the end of the day, being social is a spontaneous and natural thing and as soon as it looks planned, it ends up looking contrived and NOBODY likes fake people right?

And in terms of his language, the systematic way that he is taught inevitably leads him to sound very “prim and proper” when he talks which is completely fine with me as I am just content to have him talk. But the thing is sometimes he does end up sounding like a middle aged English professor! So lately, instead of forever correcting his broken English and making him speak in longer sentences, I’ve also taken a step back in that because I realize that I personally do not know any 5 year old who speak in a grammatically accurate 6-7 word sentence anyway!

Raiyan is at a point now where his personality is shining through and though I do accept that his language is not completely there and he still tends to talk on and on about his interests without really attuning to his audience, I have to accept that he’s still a kid, he will eventually learn all these so called rules slowly but through experiencing them and not just by being told about them but most of all, I have to be confident that despite all the shortcomings that I only see because I’m so stressed out over them, other children are also children, who are not cynical and who will be able to just see Raiyan for the sweet and delightful boy that he is. InsyaAllah he will get through this and at least for now, I’ve taught myself to not be so worried about it anymore. :D

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!

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!

What's YOUR autistic thing?

As I think I might have mentioned on here or on pweshes diaries, my one "thing" that you could call bordering on an autistic trait because it's something that uniquely bothers me and not so much others, is hating to see different play-doh colours being mixed up.

I think that's probably why growing up I didn't play with play doh much if compared to other children because this "thing" of mine must have restricted me from being able to play with the play-doh as extensively as other kids.

I think it has to do with the fact that once they're mixed, that's IT. You can't go back to the original colour and you're left with the mucky colour that is the unfortunate product of your mixing experiment. Just like Raiyan's green farmer he once made.

And also, knowing how much the kids love to play with play doh, we end up just buying new sets of play doh everytime we go to the shop. Which would affect another trait which I can say is probably a typical trait a lot of other parents share- spending more money!!

So thankfully I discovered from the grand internet a way to make your own play doh! Admittedly, they are not as perfect as the store bought one but the kids didn’t seem to notice any difference (even Raiyan!!- or I think his polite conscience has been shining through more lately!) and I could finally sit and happily watch them play the play doh and not worry about all the colours getting mixed up and ALSO about them drying up etc etc because once that happens, we can just make some more! Yay!

the mixed colours don't bother me anymore!

A few funny things about this story that I want to share:

• When I was telling Raiyan that we only had red, yellow, blue, green and pink colouring so those are the only play-doh colours we can make, Raiyan cheekily said “But mama, we can mix the colours to make other colours!” DUH mama;
• I actually bought the wrong kind of salt as the texture would have been better had the salt been finer. I however didn’t expect Raiyan to REPORT it to Jo the next day (who always makes fun of my very frequent “DUH” moments”): “But um sorry Jo, Mama bought the wrong salt!”

Anyway, you can see the process of us making the play doh here. It’s a really good get together activity too you know!

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!!!

Personality or Trait

After all these months of ABA therapy, we see Raiyan’s personality shine through more and more every day. His temper tantrums are long gone and he now expresses his disappointment by just crying in a tolerable volume and he would always stop after some efforts at negotiations to make him feel better. He is definitely not as fussy as he used to be and really doesn’t mind when things don’t go exactly as planned and he is also more welcoming to trying out new things. He is also very imaginative with his playing now. Just this morning, he was scooping out “vanilla, banana, chocolate and strawberry ice-cream” for everyone using his play-doh set. I point these characteristics out because how Raiyan was before the therapy in these areas are well known to be traits of autism so I guess we proved science right that through the therapy he has been getting, he has come out a more open minded person after overcoming the need for routine and the rigid resistance to change.

In his earlier years and especially since we were oblivious to any suspected disorders, we had always just accepted that it was his personality that made his behavior seem to border OCD! He would insist to change his clothes even if there is a tiny spill on it. When being called over, he would always first put back his toys on the shelf and arrange them neatly before his mind could rest and come to us. He would only eat his meals using the same set of bowls and cutlery. He would insist to have all buttons buttoned up, whether they’re his or others. He would freak out if you change the lyrics to a song he knows. But now, I can honestly say that none of these things bother him anymore. Apart from the constantly messy playroom, of course we are happy to see this happen! It’s such a relief to not have to constantly worry about his strict rules and we are definitely altogether more relaxed generally when compared to before.

There are still some things that others can easily construe as the autism, such as the ego-centricity in that everything has to revolve around him and he doesn’t really get the concept of others around him needing to do the same things as he. There’s still the nonchalant stubbornness that if he decides to not want to do something, he just simply WON’T and there’s hardly any other way around it. Loyal readers of this blog would know that there is still the obsession with the animals and how not a day goes by without animals playing a big role in his life. And much to our astonishment, he has retained much of his amazing memory skills! Just last week, he told Jeff how he wants to go to Jungle Gym and play in the ball pool and on that note, he also told Jeff that the ball pool has 7 different colours altogether in it. Though I don’t remember exactly what the colours were, I can tell you that they were completely random colours (in case you think he just copied off colours from the rainbow) and Jeff checked and Raiyan was basically right about them! Isn’t that bizarre? I’m sure one would still think THAT as an autism trait.

I guess with everyone knowing Raiyan to be autistic, that stereotype will always stick on him, despite everyone close to him being more inclined to think of it as just being HIM and not necessarily the autism. At the same time, with more therapy do I risk him losing more of these so-called “traits” as how he has lost the earlier ones I mentioned?
It really is a fine line between trying to help Raiyan flourish in this world independently but at the same time to not take away the very essence of him. Of course I see how terrible it is for anyone to be told to change the very essence of him or her. As how the neurodiversity group has time and time again advocated, it is like others telling you that you’re not good enough for this world as you are and that you have to change for it by possibly sacrificing your own personality.

I still think that no one can ever know where that line lies and no one can ever really be sure as to when it is a trait that you want to try and remove and when is it really a personality that cannot and should not be touched.

All I know is even within myself there are some flaws of me that I’ve always tried to battle and improve and yet have found it to still be stubbornly there. And I do find myself getting slightly mentally disturbed when I am pressured to get rid of it. But that’s not to say that I’m just going to carry on having my flaws and seeing other people get hurt by it. I’m still trying to overcome it as much as I can but at the same time remind myself that God has made me like this and I shouldn’t beat myself up too much about it.

And that is where I try and draw some lessons from to guide me with Raiyan too. Of course I can never be too sure what is an autistic trait and what is really his personality. But so far, with whatever aspects of him that the therapy has worked on, all that matters for me to see is that I have never, in all his life, seen him happier than he is now. At least that much I’m sure of.

Ongoing Battle.. Will it ever stop?

Lately, Raiyan has been difficult during mealtimes again. There was actually a period of time when we relatively didn’t have any problems with getting him to come to the dinner table and eat his meals. Admittedly, the condition of the TV being on is a pre-requisite on our side for him to happily clean his plate.

Feeding him are times when I get confused as to which road to go. Because if I were to follow his pattern growing up, the main reason why Raiyan always refuses to eat is because he doesn’t want to stop whatever he is doing and move to the dinner table. Even the act of chewing his food seems to take up such an incredible amount of effort by him. But I know this to be the reason because every time we successfully coax him to finally eat, he would always clean his plate.

Simultaneously, there are times however when he does look genuinely full and so there have been occasions when even after successful coaxes, he is not able to finish his meal.

So that’s why his latest act has really thrown me off and has made me feel completely unsure as to what to do next. NOW, whenever we ask him to eat, he would say

“But I don’t want to eat, because I am full. My stomach feels funny and otherwise I get stomach ache. Look at my stomach. It’s full!”

The thing is I know that half of what he’s saying, he got it from me cause he heard me saying it just last week when I suffered my bout of diarrhea. So I can’t help thinking he’s just using it to get out of eating not because he’s really full but because it’s due to his usual reason of not wanting to shift from his present activity. I also think that he can’t be full since he hasn’t eaten anything for the last 2 hours.

BUT, on the other hand, I also think that maybe he really IS full even though he hasn’t eaten for 2 hours and I shouldn’t compare a little boy’s stomach to mine. I’m so confused!!

And one last thing, I have no idea how to really describe what a stomach ache feels like because for now, I don’t believe that he really does have a stomach ache. I think I might just run through the Boy who cried wolf story with him later!

Sorry this post had me going round in circles! It’s just me venting my frustrations with Raiyan and his meals that has been going on for the past week.. I hope it will pass soon!

Week 36 Progress

It's been a while since I posted about Raiyan's progress with the therapy. Alhamdulillah, Kerri, Jo and Tracy have all said that he is doing very well with the programme. In fact, what is more important for him to focus on more these days is (surprise surprise) his social skills and his behaviour in class so we are now even considering reducing the ABA hours and instead adding on more hours for him to be supported in class.

With Raiyan’s basic language in place, his ABA programme has been geared into more logical thinking exercises that are compelling him to think more for answers rather than just being rotely told what to say. And from what I observed with his session with Jo yesterday, he is coming up with the most adorable answers ever!

Unfortunately, I have to admit that I have been slightly out of date with his ABA programme lately but now that I will be staying put in Brunei for at least 7 weeks before my next trip, I’m really hoping to get back into gear and start generalising his programme more (plus we are also newly energised with Raiyan’s new therapy room in our new home).

Things that Raiyan was doing with Jo yesterday:

1) Odd one out: Raiyan lays out five different objects that belong to a same family (like animals, fruits, transportations) and he asks Jo a question which would single out one item out of the 5 and then 4 etc until all are eliminated. So for example, in a family of animals, he asked “which one has a snout?” or “which one has a mane on its neck?” and Jo would (easily :D) guess which one he is speaking of. And remember this is ALL voluntary language on Raiyan’s part and not rotely taught at all!

2) Pragmatics cards: More hypothetical situations are set up for Raiyan in these cards and Raiyan is expected to answer what he would do in such a situation. Though some answers (especially in situations where he may not be familiar with) are given through the cards but one such as “What makes you angry?”, he answered himself with “When Alisha scribble my drawings”.. so cute! (But poor Alisha.. Jo said she’s blamed for a lot of things that upsets Raiyan..!)

3) Describing things: Raiyan will be given an object that he needs to describe with 2 or more descriptions. This is really good in encouraging his natural language to come out and also will help familiarise him with everyday situations when he needs to describe things to others to get others to understand what he means.

4) I/you/my/you/his/her: I HAVE NO IDEA HOW JO AND TRACY MANAGED TO GET THIS THROUGH INTO RAIYAN but they did! Raiyan always gets his pronouns mixed up so a good way for him to familiarise this is by doing things such as making him touch Jo’s nose and ask him what is he doing (“I am touching your nose”) or making him ask us what we are doing when we are holding Alisha’s hand (“You are holding her hand”) etc etc. He will almost always get it right IF he concentrates but at least we know he is capable of doing so :D

Raiyan is also doing better in class. His reading is very good and he is up to 4B stage now which we are told by his teacher to be the highest stage for his year now :D. He is also acceptable to do more writing and is actually doing more on his own at home (his current favourite now is writing birthday cards for his best friend Adek).

Of course his behaviour, especially in terms of his “loudness” still needs to be worked on. At the moment, Raiyan actually has a slight sore throat and is losing his voice a bit so hopefully from here, we will try and train him to get used to talking in a lower voice.

Alhamdulillah again for all the progress. Til next time!