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

Things can only get better

It’s no secret that Raiyan has had a quite rough start to the school year. And I have been quite honest with my own feelings in handling this difficult time in a few of my previous posts. Sometimes I do feel like I should just be thankful that Raiyan IS in school and so I should just continue to feel highly indebted to ISB for still accepting him despite the mayhem he seems to be causing. But on the other side of the coin, I sometimes still can’t help feeling like Raiyan is totally manageable if one is to take the time and learn to handle him the right way and so I can’t help thinking that all this drama is actually unnecessary and preventable.

To classify dealing with these battling emotions on an almost day to day basis as being highly nerve-racking is not exactly an exaggeration. This on top of being completely insecure and uncertain of Raiyan’s future in a school we are unsure favours his presence or not.

Our feelings were therefore muddled upon receiving a letter from the school last weekend requesting a meeting to address Raiyan and his issues in class. On one hand, we were pleased that finally some level of communication between the parents, the teachers and the administration can be established so we can start avoiding the convoluted messages we’ve been getting before this (you know where we are told everything is fine but then we hear something else from Kerri or Jo). But on the other, we were tremendously apprehensive about finally confronting the issue head on for fear that this may be the opportunity for the school to once and for all, inform us of their inability to continue with Raiyan and so we gotta start packing... or at the very least, we were suspecting that the school wanted to ask for full time support for Raiyan in class which would obviously mean added expenses on our part.

Alhamdulillah the meeting went well and better than we expected and it goes far to show how important good communication is. Instead of reasons of not being able to cope, Raiyan’s teacher had requested more in class support for Raiyan because she feels Raiyan, being incredibly bright, has the potential to go far with the right support and she fears that he will be short changed if the support is not there. And instead of needing FULL time support, she merely asked that he get the support during the crucial times of the day when presently, Jo is only around during times that Raiyan may be able to cope independently.

We discussed lengthily many options to try like:
-shifting the timetable of Jo’s presence in class
- using one of Kerri’s trainee as additional support but at a lower cost
-reducing his ABA hours and increasing in class support hours and
-picking Raiyan up earlier from school

all whilst maintaining the amount of subsidised school fees we have been paying this term AND the costs of his ABA therapies to a certain cap.

So this morning Jeff managed to narrow down 2 options to propose to Kerri and Jo and hopefully we can start either one after Hari Raya. The school has also agreed to review the whole issue again at the end of the term which may mean that if Raiyan is settling in better, there may be less need for in class support and then we can start increasing his ABA hours again. Hence we are happy to see that the school is not expecting Raiyan to have support permanently.

But best of all, the meeting has really helped put Jeff and me more at ease about the school’s impression of Raiyan and how he is perceived by them every day. Sure he is hard work but Alhamdulillah, his teacher genuinely does look like she has Raiyan’s best interest at heart. Plus the fact that she thinks he is incredibly bright and he can go really far is always comforting for a special needs parents to hear as another person other than us has managed to see Raiyan past his label for who he really is. Something we hope more of others will be able to do. This has surely helped me in this “peaceful” journey of ours and hopefully things can only get better after this..

Week 36 Progress

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

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

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

Things that Raiyan was doing with Jo yesterday:

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

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

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

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

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

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

Alhamdulillah again for all the progress. Til next time!

Look what I unwrapped this morning!

Feeling all blue and dreadful for the start of my intense full 4 days meeting (starting from today), I was completely uplifted this morning by this award given by a fellow mommy blogger, Viviana from Malaysia which completely cheered me up! Thank you Viviana for both the award and your kind words.. :D

I got the rules of the award from Viviana's blog:
Rules of the award:
1. The winner may put the logo on her blog;
2.Put a link to the person you got the award from;
3. Nominate 5 blogs;
4. Put links to the blogs;
5. Leave a message for your nominees.

The blogs I nominate are:
1. Julie and Daniel- Delightful stories of a gorgeous boy with autism and his amazing mommy, which includes homeschooling, visits, tips and many many things other mommies can aspire to!
2. Nisa and Hafidz- My beautiful cousins Nisa and hubby Hafidz who writes about their life together in UK and who never fails to remind me of how sweet and precious true love is that I constantly look forward to read about theirs every day!
3. Pieces of Me-this super lady just may be the funniest person I read on the blogsphere.. this ultra fit babe has a non-nonsense attitude to life that all of us can learn from. I know I have!

I know I have 2 more blogs to link and I shall do that later after further consideration as I have to get back to my reading for my meetings now!

Happy reading to all and thanks again Viviana!

New Year,New Buddies

Learning Ladders Society has been running this joint programme with ISB since last year where we have the IB (6th form equivalent) students as part of their community service programme, take care of our kids for about an hour at the adventure playground at the school. The students that were in the programme last year, many of them were STARS of our Learning Ladders Society Launching Video =), are now in upper IB which means they have to start concentrating more time on their studies. Which means that the lower IB students have to take over this year.

So yesterday was the handing out/takeover session from the old to the new. And what a great turnout it was! :D. A bunch of new parents also came over and it is always nice to meet new faces and share new stories. It was also nice to be reunited with all the other usuals after not seeing each other during the summer breaks!

To the new parents, I can anticipate that you may be initially wondering what are the benefits of this programme. And let me assure you, the improvements I see are not just with Raiyan but also with other kids:- their confidence really soars.. Not only their confidence to try new gross motor skills such as climbing, hanging, running, rolling, catching ball but it's their improved social confidence that has amazed us parents. From initially being either terrified or completely oblivious to the existence of these "buddies" (what we call the IB students) and to the other children, after a while, these kids actually start to ask for their buddies by name, are obviously happy when they see the buddies and all the other kids and generally look so excited and thrilled everytime they arrive to the playground.

I also see the increased confidence in the mommies and daddies who bring their kids because from initially being worried about every little step their child takes, they are now chatting away with each other without a care in the world about their child for just that one hour. From all the daily stresses we parents get in taking care of our child, don't you crave for that one assured hour when you don't have to worry about your child AND know that they are enjoying themselves at the same time?

Plus this programme is absolutely FREE so long as you are a member of the Society.

Another great thing about the programme is how much we have spread positive awareness of autism to the buddies themselves. From not knowing what on earth autism is, these teenagers now can actually converse and communicate with our kids AND I'm sure it must be so fulfilling for them to be able to do so considering how hopeless the situation must have been when they first started! And they can spread the positive awareness to others and so on and so on.. Even they are amazed to see the improvements in these kids:D

As you can see, there are many many advantages to this joint programme so we would like to invite more and more parents to come! Just contact Learning Ladders Society for further info ok!

Great Motor Skills Raiyan!

Oh and siblings are welcomed to join along too!

Post Demolished Zoo

Ermm, just ignore that Academy Awards Book!

This is Raiyan's much improved zoo which he created from scratch after I demolished the one before it (read the previous post as to why I had to do that).

The good thing is after having to do it again, Raiyan grabbed the opportnity to be even more creative! Now his zoo has a hill with a lion's den at the side, an amphitheatre at the side to watch the penguins and the dolphins (and notice that the penguins are on polar-like white legos and the dolphins are on ocean-like blue legos) and lastly, the zoo also has a tree with a monkey and bananas on it! Apart from a little help from me to make the lion's den (hey I had to do something after I demolished it!), Raiyan did ALL the rest on his own. I am so proud and happy with how far he has come with his imagination play. But I am more happy of the fact that he doesn't throw a freak out fit if others demolish his things let alone touch them! AND he can easily proceed and make a new one! Amin!

A Tidal Wave Amidst the Peace

WARNING: FRUSTRATED MAMA RANT AHEAD.

Today has been a pretty low day for me.

Just to update, Raiyan has been having a few “social” problems whilst adapting and settling into Year 1, so much so that we had to shift him to another class so that he can be together with Fadhil which means that Jo (who also shadows Fadhil) can eye them together instead of separately if they are in different classes.

Things seem to be going well this week. Every day when I pick Raiyan up from school, the teacher kept reassuring me that everything was okay and he was doing relatively well. I do know however that Raiyan still has problems with his loud voice, in particular when he shouts out in class, either to get attention or worse, when he’s frustrated about something. Nevertheless, every day of the week I was reassured that everything was ok, so I was grateful, relieved and was beginning to feel confident again about his future in the school after a rather tumultuous start to the year.

But today, I suddenly get news about Raiyan’s teacher receiving “complaints” from other parents about Raiyan’s shoutings. I don't want to go into detail about what I heard for I don't want to put anyone in a difficult position, but simply put, a lot of troubling thoughts and questions were running through my head the whole day. Venting to my fellow Learning Ladders Ladies was helpful but unfortunately was not helpful enough. To say I was enraged is an understatement.

I accept Raiyan to be autistic but in this country where there is a 99% level of ZERO understanding of what autism is, sometimes and especially lately with him having improved so much, the label of autism has only proven to be a nuisance for Raiyan for it has at times led others to have the worst but unnecessary preconceived notions about him. Some people really have absolutely no idea that autism is a spectrum and that not all autistic individuals are alike. Some people are completely ignorant of the fact that autism is treatable. Some people either dont’ know or just forget that Raiyan IS able to read, IS able to write, IS able to mildly socialise with others, IS able to communicate a lot of things, IS able to be calmed down when he is upset, IS able to be told what to do and IS able to try new things. But what happens instead is the MINUTE he does ANYTHING remotely different, people think of the autism and SHUTS THEIR MIND AND ACT HELPLESS.

It would be so easy for me to just throw in the towel because we have seriously been working so hard on Raiyan’s social skills lately. There is not a day when we are not reminding him about not interrupting others when they talk, about the need to learn sharing with others, about the need to keep his voice low (this has been going on for months! If there is some surgery where I can permanently lower the volume of his voice, I would take it but what can we do? He is BORN with those vocal chords!), about the need to wait for his turn and about the need to raise his hand if he wants to say something. And along the way, I’ve been doing it with a heavy heart because I can’t help feeling like he is being overloaded with all these new rules every single day ON TOP of his school work and his therapy. And what still happens? A shout or two still led to make us feel that Raiyan is not good enough to be in the class, despite him improving in everything else. Who wouldn’t feel frustrated? I mean I know I said I wanted to deal with Raiyan's autism journey "peacefully" and I really try to not ignite touchy debates through my posts, but I really feel the need to voice out the reality of what we autism parents have to face when it comes to our attempts in wanting to educate our children in Brunei. Let me break the news, handling others' prejudices and narrow mindedness makes up such a big chunk of it all. With the law providing for inclusive education, ALL schools are obligated to accept special needs students. Hence, by right, us autism parents should never be made to feel like our children are not good enough or do not belong in this or that school. But the sad fact is that either our children are made to feel that way OR they just end up being neglected simply because others do not know how to handle them.

This is why I am NOT going to give up. Because to give up would mean taking him out of school and letting him stay home and therefore denying him a possible independent future. And to give up would mean further instilling the current typecast Brunei has on autism when I know for a fact from reading so many stories of improvement and even recovery that there is so much more hope for these children than the extent of what those in Brunei thinks.

I accept this challenge wholeheartedly and tonight I went a step higher in trying to get through to Raiyan about handling his frustrations better by way of modelling instead of just telling him. When I tried to explain that it is not good to take things away from Alisha, I purposely demolished his lego zoo to which of course he got incredibly distressed. I immediately took that opportunity to tell him that how he is feeling there and then is how others feel when he takes something away from them or when he doesn’t want to share things with them. And lo and behold, he immediately stopped crying and really looked like he understood what I was saying and vowed to try and not do those things again. Of course I expect to reinforce this more later on but this occasion really did feel like a breakthrough compared to previous times.

So what happened today is probably a stronger kick in the butt for me to work even harder with Raiyan and to remind me that this journey is NEVER going to be easy. Then it occurred to me that life is NEVER going to be easy anyway, so I am just preparing my child to cope and handle this ugly world as early on as I can. AND after today’s incident, I am sorry to say that after witnessing such intolerance by others towards anything slightly different together with constantly seeing what seems to be people’s increasing needs to strive for superficial perfection, the world’s just going to get uglier.

But the beauty with Raiyan and all autistic individuals is that they are completely oblivious to all these superficial crap. It's just me that has to learn to not let all this crap affect me so much :-P

Never Stop Playing!

Here are some pics of imagination play Raiyan got up to recently.

This is something he saw in that children's show Hi-5. Upon seeing these hoola hoops he insisted on copying what Nathan did with it in the show-which is to make it look like a bicycle. He did get a little help from babah on this:

Raiyan still really loves to play with these wooden blocks expecially making houses of them:

This is Alisha's baby Emma having a picnic under a tent, courtesy of Raiyan also (oh and thanks to Alisha too for lending her toys!)

And of course the ultimate favourite is anything to do with animals and this is something Raiyan created just last night, which I can only assume to modeled on what he saw in Singapore Zoo:

Notice the penguins on the side (from the rest of the animals), some of the animals in their cages and two lil people (who he says to be him and Alisha) on the tram going round the zoo! How cute!