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!

Countdown to school

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

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

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

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

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

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

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

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!

$Money Money Money$

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

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

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

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

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

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

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

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

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

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

Dinner Table Battles

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

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

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

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

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

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

Overworked

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

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

School Update

It’s the end of the school term and we are happy to report that the rapport we have with the school is still very encouraging. Raiyan’s school report was very good (I will post excerpts from that in the next post) and so after the quite rocky start to the school year, our family are now more optimistic about seeing him continuing on in school with no major difficulty, insyaAllah.

Of course, the arrangement that we had with the school as explained in this post had to be reviewed and as seen clearly from Raiyan’s report, one can deduce that it did help. However, what we didn’t want the administration to misinterpret was the fact that Raiyan needed the in class support to “coax” him into doing the work and NOT to “teach” him doing the work. Or more specifically, the in class support was there to address his behavioural issues rather than the academic side. Because we know for a fact that his school work is actually extended by Jo and so he is actually far ahead from some of his classmates, we know that Raiyan wasn’t having any problems in actually achieving the academic standards expected of him in class. His problem is when and if left alone, he gets bored and then there is the risk of him either switching off and withdrawing into his autism world OR he becomes disruptive by shouting in his loud voice to get everybody else’s attention. That is when unfortunately he won’t do his work in class even though he KNOWS how to. And THAT is when the in class support becomes useful.

However, his class teacher reported that there hasn’t been any disruptive behaviour for a very long time and she and the assistant teacher are now able to communicate and interact with Raiyan better after having spent some time getting to know him this term. Thankfully, they share the same objective with Jeff and I for Raiyan to start working towards independence. It seems that most of the time, Raiyan IS able to cope independently in class but there are still the odd times when he doesn’t and those are when it helps to have the in class support around. We are just slightly concerned because financially, this may mean that we are paying someone to be around as “back up” where most of the time she would just be sitting in the background in case Raiyan misbehaves. At the same time, we also don’t want her to be hovering above Raiyan at all times because that will delay his independence even more.

So we had a meeting with the Primary Principal, Raiyan’s class teacher and Jo and extensively discussed all of the above. Everyone agreed that Raiyan is more than fine academically already so even if he was to fall back a bit next term due to a change in the arrangement, he will still be at an acceptable position. Alhamdulillah, Jeff and I were so pleased to see that everyone was on the same boat in wanting to see Raiyan start moving towards independence so cutting back on the support will be essential.

In conclusion, we all agreed that Raiyan will only have full support for the first week of term and then this will be halved for the next 2 weeks and after that he will be getting no more support in class and this will be on a trial basis which we all be monitoring closely.

Of course, Jeff and I were plenty elated after that because we were really expecting the school to insist we keep the support because we had assumed that they will argue that it was because of the support that Raiyan had such a good term report. But thankfully, we are blessed with a really supportive, dedicated and understanding class teacher who is now willing to have Raiyan be independent in class- just like any other child. Believe me, from some of the comments I had from the school when Raiyan first started this term, this is very reassuring and comforting for me as Raiyan’s parent to know.

Of course it’s not going to be easy and naturally we are very apprehensive and not completely confident that he will pass the trial with flying colours but the very fact that he’s been given the opportunity to do this already means so much to our family and all of us will work extremely hard to prove that Raiyan can do this! Will keep you all posted!

But for now, enjoy the holidays!! I know Raiyan is! :D

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.

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!!

Raiyan's Climbing Skills

Raiyan's gross motor skills has improved a lot that he can now easily and verrryy quickly go up this playhill at the playground! And he's sooooo confident at it too!



He's also really good and fast on this balancing beams.. He keeps saying "I am balancing!" at the same time too!

Play Doh Farmer

This is Raiyan's farmer which he independently made with his playdoh birthday present. Since he has mixed all of the colours in the set to make a rainbow, the result of all those mixed colours is now this mucky green.. which to me makes this farmer a tad freaky looking.. I thought it looked more like a scarecrow, but Raiyan was quick to correct me (the corrector that he is) and still insisted that it is a farmer!

Oh and the horse and the cow next to the farmer is from the counting animals book that babah bought him for his birthday present!

Learning to be Independent

Raiyan helping himself to his favourite glass of cold chocolate milk, diluted with fresh milk.. Well Done Raiyan!

YUMMMMMEEE!!!!