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!

Thanks Pweshes Babah

Raiyan's ABA programme file suffered a wet accident last week which dented the actual file but thankfully the papers inside were managed to be saved. Mind you, even if this mishap didn't occur, I think it was high time that the file needed to be replaced cos it was getting kinda "buruk.." and if you know Jeff, you would know that these kinda thing really bothers him:

So this accident was a good reason for Jeff to give Raiyan's file a make-over and did he go all out or what! Not only does his file now has a cover with Raiyan's picture and our phone numbers for lost and found purposes, the back cover has Raiyan's weekly timetable on it and inside comes complete with this index guide! Sigh, what will I do without my pweshes babah huh..

Jo said the file seems so posh that she didn't dare write in it at first! Haha!!

Week 41 Progress

Raiyan’s programme for the past week has been really tough so whenever in the past I have ever felt comfortable with where Raiyan is at, I am constantly reminded by these difficult times that we really do have a long way to go with Raiyan. But no matter what, we are determined to get through these difficult times and again, we are always thankful for the fact that Raiyan seems to be coping with everything around him really well.

The stuff that we are working on:

1) Language extension:- the subject matter for this week is “sports” (whereas last week was on nature, which he amazingly got just like that- *snap of a finger*!). Sports isn’t something particularly familiar to him but he still seems interested nevertheless and again, it’s all about familiarizing him with things that other children would probably learn more naturally from TV, like watching tennis, golf, swimming etc. (Note:-I wish the Olympics has reruns!). Right now we are just working on Raiyan naming the various sports and the next step after that would be asking him questions about the sport like “what sport do you play with a racket?”

2) Storytelling:- With the story starter pack, we get picture cards with an animation and a few words describing it and Raiyan is expected to elaborate on the story according to his imagination. This has also been difficult for Raiyan because he always needs something visual for him to describe something or at least a familiar story that he can relate to the cards but since these cards are very new to him he would always just resort to answering “I don’t know” to everything!

3) Emotions: Last week we were working on identifying emotions from somebody’s voice where some of them he got pretty quickly, like happy, excited, angry and tired. The more specific ones like bored, worried, in trouble etc we still have to keep working on. For this week, he is given a set of pictures of people in situations where he has to guess how they are feeling. This is also hard work as Raiyan seems to only remember the basic ones like happy, angry, excited and tired.

4) Homonyms: Raiyan has to learn that a thing can have more than one word for it and a word can also have many meanings (through flashcards). This one he can do quite well and I am also trying to generalize this by introducing more malay words to him at home.

5) “Ask” and “tell” instructions: Raiyan doesn’t really know the difference between asking and telling so this is something we try and generalize at home as much as possible. He’s slowly getting this one but still gets confused at times!

6) Listening: This board game has a cd playing certain sounds in different areas of the house and Raiyan has to match the sound to the picture. Eg. Sound of a hairdryer matching a picture of someone drying her hair or a sound of vegetables being cut being matched to the right picture. This one I was very surprised to find him getting 85% of them right on the first try!

Raiyan has mastered recently (though sometimes still need a little teeny weeny prompting):

1) Syllable drilling: He can tell how many syllables there are in a word
2) Advances pronouns: He knows to appropriately use my, your, his and her
3) Language extension: He knows to label practically anything to do with nature like mountains, lakes, waterfalls and he knows to distinguish between nature and man-made. I swear he was so natural at this that we really think his calling one day is to be a tv host for the discovery channel!
4) Describing topics: He can tell you 5 things about his brother, going on an airplane, a birthday party, hari raya, going to the cinema and his mama!

Raiyan is also coping very well in his classwork according to Jo who shadows him there and he is also by far the best reader as he is now reading level 5M (!!-When the average for the rest of the class is on 3). And because he is so special in his reading skills, he gets special picks for his home reader books (ISB sends a book every single day for the child to read which will then be logged on to a register signed by the person he read the book to) AND he also gets to borrow 2 books from the library instead of just 1! I really hope he can learn a lot of things, especially social situations, from all the stories he reads too.. Anything to half the job for me!

Alhamdulillah for everything! Til next time!

Clutter Free

I decided to re-do the whole layout of this blog all over again and decided to go for a more "calmer" look and fell instantly in love with this new header picture. The right hand corner actually looks like a farm which is again apt for Raiyan since he loves animals so much.

I'm having some difficulty with placing some things in the boxes at the bottom of the page and my active meter counter is still not coming out so I still have to work on this page so be prepared for further changes! Nevertheless, I'm going to keep all the sidebars stuff at a minimum so that readers can focus more on the actual posts.

Many thanks and read on!

Faces of Autism

I discovered this absolutely beautiful blog about a week ago and immediately sent Raiyan's pic off to be included in it. It's an honour to see Raiyan featured along with some of the most adorable, gorgeous and brilliant children out there in the world. Check out the link on my top tab in my right hand column or you can see Raiyan's page here.

Now who can still say that autism is tragic???

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!

Diagnosis Assessments

For interested parents, you can actually obtain a professional diagnostic assessment for developmental delays for your child now. Please contact Linda at Learning Ladders for more details.

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!!

Autistic/Has Autism-Does it really matter?

In one past post, a commenter actually accused me of not seeing Raiyan first before the autism because I call him “autistic” and not “with autism”. I was slightly taken aback by this accusation, especially because I have used the terms “autistic” and “with autism” interchangeably. In fact, didn’t she see my blog description “Heartwarming tales of a pweshes boy with autism in Brunei”?

Can you believe there are actual debates(on top of every other endless debate on autism) over the usage of these terms? Frankly my humble opinion on it is it makes no difference which one is used. What I hate though is when a parent judges another parent based on their choice of which term they use.

The reason why some people prefer not to say “autistic” is because it gives the impression that autism defines the child and that is ALL he or she is, whereas if you say a child “has autism” then it seems clearer (I guess..) that the child is his own person who happens to have autism as part of him.

You would know from reading my pweshes philosophy that I have always thought that autism is a part of Raiyan and at times is actually a large part of him. But I still do not think that Raiyan equals autism and nothing else. And it certainly doesn’t mean that if I call him autistic, my philosophy is any different. To me it is just a different use of language where “autistic” is an adjective and “with autism” makes the autism a noun. It means the same thing!

For example, when you use an adjective to describe others such as “she is bossy” or “he is creative” or even something not nice like “she is fat”, you are not defining that person to be ONLY smart or funny or fat right? And wouldn’t it be strange to call them “a girl with bossy qualities” or “a boy with creativity” or “a girl with a heavy weight?” Doesn’t that sound weird?

So please, if the next time anyone feels the urge to tell another parent off or judge them just because they use “autistic”, please give them the benefit of the doubt that most likely than not, it is simply because it’s easier and shorter to say.

And for others, who hear a child being described as “autistic”, give the child the benefit of the doubt that that’s only an adjective to be used of his or her character at times but it does not FULLY make up who he or she is.

Nobody likes to be defined by a label anyway because every human being, disabled or not, has their own unique qualities that contributes to this beautifully diverse God given world. The only label you should always call another by is actually really straightforward-their name!