What did you do in school today Raiyan?

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

So first we ask: Did you play with friends today? [Yes]

Next: How many friends did you play with? [Stuck - because he still thinks this is too big and it will take time for him to count all the friends he had played with]

Try again: Did you play with friends during breaktime today? [Yes]

Next try: How many friends did you play with during breaktime? [2]

Next and finally ask: Who are the friends you played with during breaktime? [ "him" and "him"!]

We can then also further ask if he played with other friends in the classroom or during any other time during the day and he would answer different friend. All of these just goes to show how important it is to ask "leading questions" whenever necessary to get him to what we expect him to answer and then once he's in that place, it's then easier to ask him other related questions!

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

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

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

Good Idea Raiyan!

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

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.

Can't Argue With Raiyan

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

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

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

Jo: What’s that?

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

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

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

HOW CAN YOU ARGUE WITH THAT?! LOL!

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!

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!

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

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

Chubby!

This is Raiyan doing "chubby" boy - it's something that I taught him which an old darling friend taught me back in college hehe.. Kakak Shayeen, if you're reading this, it's especially for you! Thanks for teaching me this cute thang.. everybody loves to watch Raiyan doing this!

Bossy boy

Raiyan has always been so demanding and if he wants something, he’ll always insist to have it there and then and until he gets whatever it is he wants, he will continue to repeat his demands over and over and over again until it’s met.. regardless of how busy the people around him are.

Now that his language development is going really great, we are more comfortable and confident to tell him more things and believe he would understand them.

So recently we began to tell him that he is very bossy and that’s not necessarily a good thing. We explained to him what bossy meant and sometimes it does affect him and he actually stops his incessant requests because he knows being bossy is not very likeable.

But at the same time, he has also “embraced” this character of his and to make us laugh when we’re being annoyed with his bibiran demands, he’d say “I’m a bossy boy hehehe”

He seems to kind of accepted himself to be this bossy boy that last night, out of nowhere he started to sing to himself in the tune of “are you sleeping”:

Where is bossy? Where is bossy?
Here I am , Here I am,
I’m a bossy boy, I’m a bossy boy,
Bossy boy, bossy boy

Hahahahaahaa!!!!

Locked In

In our old house, it was a habit to never hang the door key on the door for fear that Raiyan may lock himself in the room but is unable to unlock it back. Our door style both in the old house and the new house has the lock looking like this:

So it's the type that you can easily lock but once the key is a bit out of place, it would be hard for a child to get it back into the right position to unlock it back.

Which was precisely what happened to Raiyan this morning! Unfortunately, since we moved to our new house, we had forgotten about this previous rule and had the bathroom door key hanging there all this time. We haven't had such an incident in the 4 months that we've been here so I was quite horrified when Nur told me that Raiyan has locked himself in and was crying away not being able to get out.

Alhamdulillah, we managed to calm him down and told him to take the key out and then hand it to us under the door which he understood after a few times Babah tried to tell him. As soon as we opened the door, you can literally see the utter relief on his face and the poor thing said "I was scared I couldn't unlock the door".. Let's hope he's learnt his lesson and won't be trying that again anytime soon!

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!!!

Week 45 Progress

Raiyan’s progress has been coming along really well. What we have been working on the past 2 weeks:

1. Auditory Memory: Here we are training Raiyan to really listen to what we are saying that then later on ask questions to see if he can recall what he heard. A few months ago, we checked his auditory memory by making him remember a sequence of things so this is definitely a vast improvement from then because he actually understands a story we tell him and getting him to remember. An example of a short story would be “Meg goes to the grocery store. She buys apples and bananas and pays for them at the cashier.” Then we ask Raiyan “Who went to the grocery store” or “Where did Meg go?” and “what did Meg buy?” and “who does she pay to?”, all of which Raiyan can answer!

2. Opposites: This one we are merely revising because he has been sporadically doing opposites all of these months so it’s a matter of consolidating all the previous ones he has learnt and to make his knowledge of them solid, which they are! He even knows “distinct” and “blurred”!

3. Following directions conditionally: On top of making Raiyan listen carefully to instructions, we are also making it one step harder by making him do a follow up action if what we are saying is correct. For example, we tell him “Raiyan, if you are wearing a blue shirt, rub your nose”. Of course, if he is wearing blue, it would be correct for him to touch his nose. But he didn’t quite get this so easily because even when he was wearing red, he still touched his nose! Well you can’t really blame him because all this time all we’ve done is tell him to do something! Hehe.. but he’s gotten the hang of this already and in fact, he’s started to tell US conditional instructions too!!

4. Imitates peers: Jo would bring a fellow classmate to accompany Raiyan during some therapy sessions and make him do or say certain things that Raiyan has to follow. So far, Raiyan can easily follow gross motor movements and actions but is still working on following verbal responses.

5. Comprehension: This is a follow on from item 1 above, because we would make Raiyan hear a story with a corresponding cartoon illustration and then follow instructions we tell him with regards to the picture. Eg. We use a picture of 3 factory workers in a car factory assembly line so after making him recall things from the short story we tell him, we go on to tell him to do things like “draw a line next to the chains holding the door” and “draw a circle around the man holding the paint can”. Notice they are very specific instructions that REALLY need tests his listening skills and auditory memory skills.

6. Visual Discrimination :We use this brilliant book called “1001 Wizard Things to Spot” which is kinda like Wally because they contain very detailed and crowded pictures and you have to spot and count a number of things within the pictures. It’s really good for proposition languages too because when Raiyan can’t immediately spot something, I can say, it’s on top of the shelf, under the bottle, next to the book”.

7. Listening to others’ conversations: Of course we are constantly working hard with the social aspects too so Jeff and I have been making Raiyan sit in and listen to our conversations and then we ask him “what are we talking about?” and ask more detailed questions about our conversations. Raiyan tends to then go off and talks about himself so we have to try to prevent that and make sure he listens to US and talks about US first before he starts talking about himself!

Behaviourally, he’s been really good for quite a while now where most of the time, he complies with what we say but not without some negotiations first. Lately, he has been stimming by putting his fingers in his mouth. I notice he does this as soon as he gets nervous or excited. We don’t really have a big problem with stims so long as they are controlled but with this one, we can’t help worrying about the fact that his hands are usually not clean when he’s sucking away on them. We told Jo and she said that next week, she’ll try and get a book on “germs” and hopefully we can teach him something from that book.

He has also improved with trying new foods and this morning, he finished a egg mayo and tomato ketchup sandwich with no drama at all!

Alhamdulillah for the progress! Till next time!

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!

Speech and general major milestones – after 40 weeks

I actually can confidently tell people that Raiyan is talking now. 10 months after not knowing what to answer to something as simple as how are you or what do you want, Raiyan is at a point when he can actually have conversations with others. Of course, the length of this conversation depends on who he’s having it with. If it’s with me or Jeff or Kerri or Jo or Tracy who spends the most time with him, we would know exactly the kind of words and use of language that Raiyan would understand and we would know how to be creative in asking him something with a more confident expectation that he would be able to answer. For example, when I ask him what he did in school, it is still difficult for him to answer when I ask “what did you do in school?”. This is because it’s not specific enough and he just wouldn’t know where to start. So his answer to that is always something as general as “I’m in Mrs Want’s class” or “I get golden time” or “I play with friends” (which is still excellent by the way!). So to get specific answers I have started to ask him systematically like “Raiyan, after you said bye to me, what did you do?”. Then he can easily say “I play with Fadhil and we make a cake with playdoh” or “ I play with Haziqah and make animal jungle”..That’s how far as it goes for now but it’s a start! :D Remember this post-how far he has come and how far have I come from then huh!

I can even have actual phone conversations with him now which makes me sooo happy! Before this year, he wouldn’t even go near the phone or at best he’ll just sit there holding it and wait until he’s dismissed! When he started talking earlier this year, he would just talk away to himself without paying any attention to what I have to say on the other line. But now, this is my conversation with him just 2 days ago:

(The one day I didn’t go back for lunch because I went beraya to my colleague’s house)
Me: Hi Raiyan!
Raiyan:Hi Mama! Where are you? I think Alisha and Addin are waiting for you. Alisha she’s crying because she waiting for you. You don’t leave us mama.
Me: Oh sorry, I have to go somewhere today but I’ll come back later.
Raiyan: Ooh-kay. But Alisha and Addin she wait for you come back...
Me: Sorry. But only Alisha and Addin? Not you?
Raiyan: Yees, me toooo!
Me: What did you do this afternoon? Before I call you?
Raiyan: I was playing with the computer.
Me: Were you playing with animals?
Raiyan: Whoops! Sorrryyy.. hehe (giggles)
Me: Do you know what I’m going to say?
Raiyan: Too much animals... hehehe..sorrryyyy..

Oh and speaking of animals, I have the most hilarious story about Raiyan and his animals conscience. Jo was telling me that in IT class the other day, she left Raiyan alone with the computer whilst she was accompanying someone to go to the toilet and when she came back, she saw he quickly minimised a box that was open on the screen. And when Jo came closer he kept wanting to cover the screen and tried to distract her by asking her “Jo, do you want to go to toilet again?” and “Erm, I think Fadhil need your help.”(!!HAHA!!). Of course Jo just ignored him and insisted to open the window on the screen and of course it was none other than animals. But the pweshes thing was Raiyan totally pretended to be shocked and said “Hah! Who put that there?!!”

Can you imagine the cheekiness?!!! All this time, I really thought that autistic children can’t lie but look at what Raiyan has achieved! I say achieved because even though I instinctively got worried and thought “omg my son despite the autism is still a liar!”, Jo said that the thought process that goes behind it is a lot for an autistic child so really this is actually a massive improvement for Raiyan. Plus she assured me that typical kids do this kind of things all the time too (little white lies), so I relaxed and took the positive side of it-Raiyan is clever enough to lie! Hahaha!

I have never on this journey wanted or even expected for Raiyan to turn out “normal” and I’m not saying that he is actually typical now but I have to say, none of us expected for him to improve so much within the last 10 months. Maybe it’s just Raiyan, maybe it’s the ABA, maybe it’s both. But nobody can deny the benefits of the hard work and perseverance of everyone around him, especially his pweshes therapists that have led Raiyan on this wonderful journey all the way to this wonderful point. Sure he still has his challenges in the social aspects and his language is not 100% there, but I swear when we went around for Hari Raya in the last 2 weeks, either no one suspected he was any different because they don’t know him or for those who know him, they just couldn’t believe to see how much he has improved.

We still have stuff to work on and I don’t expect that these things will go away forever. For a whole day filled with going to 8 houses for hari raya, I still had to tell him at the beginning and talked the whole day through to him. He still needs to be coaxed to finish his meals or try out new things. He still has difficulty confronting large crowds of people. He still wails when others touch his toys. He's still needing full support in class. But to me, the biggest hurdle has been crossed because at least he understands us when we explain to him why this or that needs to be done. And at least now he’s able to tell us his feelings so we don’t have to second guess him anymore.

I know it seems like Raiyan’s journey is too good to be true and even when I read back this blog and think back to how he was like before his diagnosis, I just think it’s so unbelievably amazing how much he has progressed. But I also know that other children within our society have improved too, all in their own individual and equally wonderful distances.

I just really really want to assure any worried parents out there that there is still so so so so much hope after receiving that diagnosis. Learning Ladders are working really hard to make more available and more accessible the therapy that we are providing our children because it just breaks our hearts when we hear of other children with such familiar stories and still not being able to communicate after 3, 4, 5 and even 6 years old.. It frustrates us because we know now that something can be done and these children can improve. Maybe not to the extent of the speed of Raiyan’s improvement but at least some improvement and within time, lots of improvement and that’s something worth trying for at least right? I pray for the day that no parent in Brunei needs to be terrified or be in constant denial about getting that autism diagnosis anymore. It’s vital that everyone understands that the earlier a proper diagnosis is made and the earlier an effective intervention strategy that uniquely caters for the child is started, insyaAllah the chances of this child to be able to lead an independent life in the future will be good. And these children with their amazing abilities can actually be given the opportunity to extend valuable contributions to Society and to Brunei as a whole- I think it just might be possible for Raiyan to open Brunei’s first zoo one day! Amin!

Raiyan the Author!

Raiyan has recently started to learn to make up his own stories. It began with him being able to tell a few things about a certain topic, which he can easily do now. So when it naturally evolved into making up his own story (which is not only good for his expressive language but also for his imagination and creativity), Jo the Great went one step further and made him write the story down too. Now before I have left you amazed with your mouth open, that's not exactly what happens. What happens is Raiyan would first tell the story to Jo and then Jo will write it down. She will then read it back to Raiyan (without showing him) and he has to write it all out. And as a reward, he can draw something in the end.

Oh and it's no surprise that all of his stories below involve animals!

"Once upon a time there was a chicken who laid an egg. The egg fell in the grass and broke and the chick was talking to the mummy. The baby chick said Im hungry mummy. Mummy gave her some bread and turkey."

"If I had a wish, I would make a wish to live in the jungle. I would sleep in the lions den. I would eat meat and bananas and corn. I could swing through the trees with the monkeys and swim and stomp with the elephants. The end."

"One day there were 2 cars . They were raceing. They passed the farm and the zoo. One car crossed the finish line and the other one didnt because it had a flat tyre."

Brilliant!!

Too Much Animals!

Raiyan still really loves his animals but far from being obsessive about it, we see his love for it more as a hobby and as something he can do to really make him happy. I mean everyone is entitled to have that right? I myself find so much comfort in browsing through US politics news at the moment that I could literally spend hours and hours reading up on Obama V McCain so of course I would feel like a hypocrite if I stop Raiyan from doing the same thing with his animals. The key point is to control the quantity of it so that it doesn’t take him away from other things he needs to do.

But with him being able to understand what we tell him now, Jeff and I have begun to tell him “too much animals Raiyan” when we genuinely feel like it’s getting a tad excessive. And the funny thing is Raiyan seems to totally get our complaints because we have noticed that he’s developed a conscience on this.

Take last Friday when he was playing some animal game on the computer and so I told him to play something else apart from animals. He giggled and said “okay.. too much animals..” (like “ I know, I know I’ve been playing too much animals when I’m not supposed to”). And then later on in the day (after having a 2 hour ABA session) he went back to the computer but this time, I sat next to him from the start (without any intention to check up on him at all mind you!). He nervously turned to me and said “Mama, can you get out of the room please?” Of course it immediately clicked to me that he wanted me out because he wanted to continue playing his animal game! Lol! But I’m so happy to see that he realised he wasn’t supposed to be playing with it after what I told him earlier! Seeing how he worked so hard during his 2 hour session and since I know he himself realises that he needs to reduce his animal playtime, I let him play with it anyway. :D (but for just 15 minutes..)

But that’s not all folks. Anybody that knows Raiyan would know that you don’t get off that easily with him as sometimes he has his own arguments up his sleeve to throw back at us. Yesterday, Jeff told me when he picked Raiyan up from school and Jo was there, Raiyan was telling Jo “Jo, Babah said too much animals..” and then Jo said “well I think it’s not really your fault since you’re constantly surrounded by animals anyway”(it’s true though isn’t it, and this is especially so if you are a child because in his classroom alone, there are at least 20 different types of animal “thing” to see). Upon hearing Jo’s response, Raiyan cheekily turned to Jeff and said “see!” and gave a POUT on top of that too- all to prove the point that it’s not entirely his fault that there are “too much animals!”

And to add weight on to his point even more, when we were at my sis-in-law’s place, he was given a pillow that had animals print on it to which he called out to Jeff “Babah, SEE, this has animals toooooo...” (Again, to prove his point that too much animals is NOT necessarily his fault!) Ain’t that the cuuuteesst thing?? Ha ha ha