Well let me first start on some updates on Raiyan:
1. We’ve shifted his bi-weekly sessions with Kerri from Tuesdays to Fridays now which means I can sit and watch! This is really valuable for me to have on top of being able to watch Jo every Friday afternoons because I can see more clearly how they carry out the programme and how they converse with Raiyan to elicit the appropriate responses from him. Plus it gives an added extra 15 minutes of Raiyan’s time with Kerri since before this, the last 15 minutes was the time when Kerri and I sat down to go through the bi-weekly programme together and obviously that’s not necessary anymore now that I watch the programme being carried out myself;
2. Because of the recent floodings and power cuts, Raiyan was away from school for almost a week (counting Chinese New Year on Monday). Needless to say, he was BORED, restless and was extra whiney last week. I felt really sorry for him but at the same time, he was really beginning to push our buttons with his persistent demands. After the number of times this has specifically happened in the past, I’ve grown to dread school holidays unless we use the time to take Raiyan somewhere to alleviate his boredom. But that’s just him! Other children I can imagine would probably love school holidays ( I know I did!) but with Raiyan, he becomes this cranky, stroppy brat instead! Not long after starting school last Tuesday, he’s back to his cheeky and lovable self again! Alhamdulillah!
3. Raiyan actually sat for his first ever test on Tuesday morning. It was a literacy test where he had to recount and write down a story consisting of about 6-7 sentences that was told to him beforehand and he would be tested on spelling, punctuation and the correct uses of capital (or as Raiyan calls it “catipal letters”) and small letters. I was pretty nervous about the idea of him doing an actual test and we all thought it would be useful if Ayesha (who has been up until last week shadowing him for 2 hours a day at school) be present as back up. She did prove to be handy as Raiyan at first refused to do it. As I’ve explained before, Raiyan finds trouble in following through his work not because he can’t do it but simply because he can’t be bothered to. I guess you could argue it being similar to simple laziness but as Jo explained it, if its an activity that he has already done before and does not see the point behind doing it again, he just won’t. That is quite understandable as one can imagine getting annoyed with having to do mundane things that one already knows how to do and at the same time see no purpose in doing it again. But unfortunately, that’s what the journey of learning in school is about isn’t it? He did in the end finish the paper upon some gentle coaxing from Ayesha. I was already so pleased to hear that and would be thankful to find out if he just passed but Jo actually said after scheming through the papers that she’s confident he can be in the top 3 of the class! Haha! Will confirm his “results” soon!”
4. Outside the therapy programme and apart from that 5 day no school period, Raiyan has really been a pure blessing at home these days. He obediently watches only 3*30 minutes of TV a day (which is a reward for eating his meals) and will switch the TV off everytime his 30 minute alarm on the timer rings. Now he actually needs reminders to watch his promised TV especially now that I don’t go back for lunch and without me there, it just doesn’t occur to him that he can ask the maids to switch it on (well I guess the routine is to ask me only- sigh, bless the need for routine sometimes huh!). He has easily been finishing his meals with minimum cajoling (well the TV reward was a lot of help!) . He’s been actively engaged with Alisha and Addin and looks to be genuinely in complete love with the both of them. Sure they still fight when not wanting to share things but which siblings don’t right?
But what’s best is his natural language getting better and better by the day. He still gets stuck when I ask him a specific and unfamiliar question as he finds it very difficult to answer as either he doesn’t understand my question completely OR he has this extreme fear of giving a wrong answer. Hopefully within time, he will learn that when talking about his feelings or stating an opinion, there never is a right or wrong answer right?
Anyway, to share some his adorable quips, just this morning in the car on the way to school he adorably exclaimed “Look! (Pointing to outside the car) I saw 2 dogs between the trees. Yes, I did, I did saw 2 dogs and they are between the trees” (he has this thing where he repeats everything he says at least twice. Not unlike his bibiran mana I think). Then Babah asked “Are they wet Raiyan, because of the rain?” And Raiyan replied “Yes they are. But it’s okaaayy. They just shake their faces and they will become dry again!”
Now moving on to the main reason as to why everything just seems to be all over the place at the moment. Learning Ladders Society has been closely working with the Special Education Unit of the Ministry of Education in organising a National Seminar on Behavioural Interventionand Autism to be held at the ICC NEXT WEEK on 2nd- 5th February 2009. To be honest my role hasn’t exactly been that monumental but yet I’m finding it so hard to catch a break! It’s probably due to the exasperated feel I have of not having my husband around as he is LITERALLY running all around town getting all sorts of things done. As to my role specifically, well I did appear briefly with Ms Jennie Ong of SEU, MOE on Rampai Pagi last Friday morning to promote word on the seminar (I was a last minute stand-in Linda was unable to make it due to problems related to powercuts. You can just imagine the distress of her kids right?). And for this Saturday and hopefully next Wednesday too, I will be contributing some articles on autism to Borneo Bulletin. Doesn’t seem much BUT it’s still something if you think of how I had to practise my script for the interview whilst having the cold AND how tricky and different writing a whole newspaper article is from blogging! With the blog sometimes I just allow myself to blab and ramble on but of course it doesn’t feel right to do the same in the case of the newspaper right? On that note, one of the articles is basically a summary of our family’s journey since Raiyan’s diagnosis and whilst writing it, I realised how much I’ve blocked out all of those troubling early years because it’s really just so heartbreaking. And then when I had to dig them all out for this article, I just did not expect how crushed I would feel right after. Looking back, those times were seriously a really rough period and remembering them just makes me appreciate where we are now so much more.
Oh, I digress. I was talking about the seminar and somehow it still went back to me! (hah! Maybe that’s why I’m not playing a bigger role in the whole organisation of the seminar!). Anyway, this National Seminar is going to be HUGE as we are expected to have almost 600 invited special needs teachers, teachers with autistic children and parents attending but what’s absolutely exhilarating for our society is that it’s ALL going to be about Applied Behaviour Analysis (ABA).
FINALLY, we hope others can start educating themselves on this amazing type of therapy that we do. FINALLY, we hope others can start seeing the amazing progress children on ABA can make. FINALLY, we hope others see and understand what I and the society have been yapping about all this time.
The expert consultant that will be speaking during this 4 day seminar is Dr Douglas Lee of Behavioural Solutions Inc who has a vast experience in the field of autism and behavioural intervention. He is also affiliated with British Columbia University which according to our Education Ministry is actually a very respectable university. Hence we are completely honoured and humbled that he is actually coming to Brunei to deliver various presentations during the 4 days.
During his stay, Learning Ladders parents are also each given the golden opportunity to have a 15 minute private consultation with him to ask him any question under the sun about our children and autism in general.
I will try to update as much as I can next week (I’d LOVE to do some kind of “live blogging” haha) but I can’t promise how “unbusy” I’ll be as I am manning the registration desk for the whole 4 days. But because I am absolutely excited for this golden chance of a learning experience, I hope I’d be as enthusiastic to share it here.
WATCH THIS SPACE!
PS.: Look out for the newspaper article! Hopefully it’ll be out tomorrow entitled “Our Life With Autism”
Anyway, I did want to share something Jo told me yesterday that I’m beginning to be more convinced of as opposed to before- Raiyan actually having genuine “typical” friends that not only he seeks to play with but seeks to play with him too! All this time, I guess I really underestimated both Raiyan and “typical” 5 year old children because I just keep thinking of how others would not being able to accept the “difference” in him- I mean how could other people not find him ignoring them rude, or what about the fact that he strays off into his own topic conversation unilaterally without being attuned to his audience..
So that’s why I was just OVER THE MOON yesterday when Jo insisted (cause I was still pretty hard to convince!) that Raiyan has this one boy pal in another class (who incidentally was from his reception class last year) named Jian Rong who he looks out for every break time AND Jian Rong looks out for him too :D:D:D:D She didn’t tell me exactly what they do but the idea that the 2 of them loyally looks out for one another at every break time is just too much of an *uhuks* moment for me to handle!
So later on at dinner I asked him about his friend and of course the first people he always names are all his Learning Ladders friends. But when I kept asking about somebody else, he hesitated and didn’t know who I was talking about. So I clued in the fact that he is in year 1B and his name beginning with the letter “J”. He still didn’t quite get it until I said “Jian” and he let out the BIGGEST smile and squealed “OOOOHHH JIAN ROONGG- He’s not in 1B, he’s in 1I! YESS He's my friend..”. BLESS!!
So YES, he CONFIRMED that Jian Rong was his friend and they play chase together at breaktime and other games too. From then, it was easier for me to ask him who else are his friends as he already understands what angle I’m coming from. Before, I would ask him who are his friends in class/school and he JUST DID NOT get the concept of what I was talking about. But NOW that we’re talking about Jian Rong, he knew exactly what I was asking and it wasn’t too hard to get out of him 2 other friends that he likes to play with- Anna and Adam!!! (Who incidentally Jo also told me likes to play with Raiyan too!) Alhamdulillah!! Isn’t it great! PLUS Anna is BEAUTIFUL! (Girlfriend potential maybe? Hahaha astaghfirullah….)
It was really difficult to put into words how I felt and especially doing so with an attempt to avoid offending anyone. But simply put, Raiyan is such a different boy now after one year of therapy and undoubtedly one who possesses a distinctively genuine personality that on some level, I find it unfair, for him and for others; for me to be writing about him purely in the context of his autism within this autism blog.
Don’t get me wrong, I still believe Raiyan is autistic and that will always stay with him but if I haven’t made myself clear before, I am at the point where I see Raiyan being so much more and in terms of the autism, I see it more as a gift as opposed to a burden. Though I feel like this now, I am by no means discounting or dismissing the difficulties autism has caused for Raiyan in the past; and for other children and their families who are still facing them. Alhamdulillah I am eternally grateful that our family are blessed with where we are now and to also be at a place where we have adapted to the autism by constantly making the effort to talk to Raiyan (and everyone in the house for that matter) in a certain ABA way-clear, broken down, direct and mutually understanding.
Of course there are difficulties still present, such as the lack of social cues, inability to fully express himself and the tendency towards utter egocentricity. These are admittedly ongoing challenges we have to deal with but when put into perspective with past challenges like complete lack of communication, obsessions, rigid routines, resistance to new things and of course the notorious tantrums, what our family has to deal with now is definitely not as nerve-wrecking as it was before. InsyaAllah it does seem like Raiyan is able to successfully manage these challenges seeing how they have not surfaced in a very long time. What we see now is him truly blossoming and quickly catching up with his peers that many who meet him for the first time thinks he’s indistinguishable. Now he independently comes up with the cutest quips that I, just like any other parent, loves to share on this blog just because it’s something coming out of my child as opposed to it being something related to autism.
The situation in Brunei is still very tricky in that not only is awareness on autism limited, the notion that these children can learn to overcome their autistic traits is practically unheard of. When I personally tell people that Raiyan is autistic, they immediately think they have to feel sorry for me. Though I completely do not blame them to feel this way as I know there are many other families out there who still has to constantly face the daunting side of autism in their children, I still can’t help feeling slightly cheated upon receiving the pitiful looks because if they were to really know Raiyan NOW, they would be surprised to see that we actually don’t really deserve the sympathy. This is especially so if you were to see his incredible report card of last term! But nevertheless, I accept that a lot of autism families in Brunei are still facing uphill struggles on a daily basis and urgent attention from the authorities is seriously needed. That’s why I was scared I might then be transmitting mixed messages when I’m talking about Raiyan in such an amazingly positive way.
So what do I do? Seeing how there is still much awareness needed for autism and its diagnosis, prognosis and treatment, do I want to continue to write about Raiyan that makes him seemingly “normal”? I mean it’s logical for one to conclude from reading the blog that autism is not such a big deal seeing how Raiyan is coping with it so well. I reiterate, I really do not want to discount the challenges other families that I know, who still needs to be paid more attention and as horrible it is to accept, it is easier to obtain this attention when a disturbing or depressing image is portrayed.
At the same time, I don’t want EVERYTHING Raiyan does to be construed as an autistic “thing” especially seeing how the complete attachment of that “label” has proved to be such a unnecessary nuisance for him. I mean some of the adorable things he does and say can very well be separate and independent from the autism. That’s why I thought I should share “those” stories on a non-autism blog rather than here. With this in mind, I was almost convinced that this is the way I should proceed with the blog.
However, the negative consequences of autism in Brunei still being perceived as something depressing and "not wished upon anyone" lingers on in my mind. I know of parents who insist to stay in denial about their child’s condition even though the symptoms are obvious and not getting any better. I know of parents who choose to not take their children out because they can’t bear the attention they draw when being out in public. I know of parents who doesn’t even talk about their child nor share stories about them believing it’s taboo to do so. I also know of parents who proudly talk about their child’s conditions and take him out in public even though he is still non-verbal and relatively hard to control, only to be shot patronizing looks from others. This is when I realized that if I stop talking about Raiyan as he is, I will continue to feed into this unfortunate stereotype and this I fear may lead to MORE parents choosing to be in denial about their child that they may potentially miss the boat for early intervention. Far worse, I fear this may lead to MORE parents feeling alienated from the rest of society resulting in built up resentment and frustration simply because they had to suppress or feel the need to deny something that makes up such an intrinsic part of their lives.
So I decided to maintain the blog as it is. I have to trust that others remember that autism is a spectrum and it would seem that Raiyan is on the mild end and there are others on the spectrum who still require more urgent and close attention. I also have to trust that others FULLY read this blog to see that autism IS still a big deal and Raiyan would not be where he is had he not received the appropriate treatment this past year.
I know for now Raiyan may not speak for the majority of autistic children in Brunei and I don’t expect for people to think he that he is. But that’s not going to stop me from continuing to hope to reach out to other parents on the spectrum who does feel they can relate or even aspire to want to relate. In line with my pweshes philosophy, I can only continue to hope and pray that in time, Raiyan and other children like him can not only help to inspire other families to accept the autism and work on it as early on as possible and insyaAllah along the way they too will be blessed with the opportunity to discover its beautiful side that I see today. And once you’re there, I challenge you to not want to share it too. :D
Pweshes Mimel hard at work- she was manning the booth all afternoon yesterday! Well done Mel!
Again, hope to see you there! Come and support us please! Thanks!
Funny story was that we ONLY just got the goodies this morning so we were actually planning to cancel our booth! Luckily Mimel intercepted Linda almost canceling at the very last minute and thankfully with it being a Friday Mimel, Linda and Dino and of course my dear Hubby too quickly whipped something and alhamdulillah it looks great!!
I'm posting this from my iPhone so I can't put any pics but I shall put them up as soon as I get home - cause I'm manning the booth now!
Please come and show ur support and buy our goodies ok-they were chosen by us! Hopefully you will find them in good taste heehee
Just to share, the funds will help towards renovating and decorating our learning center and of course they will always be useful for resources for the therapy and also to help top up our family in need fund.
Thanks and hope to see u there!
[Posted with iBlogger from my iPhone]
This past year I have learnt so much and Alhamdulillah some lingering insecurities about my knowledge on autism and how to handle it have been replaced with a renewed confidence in my own personal beliefs in how to best raise Raiyan and help him handle his autism.
Even though admittedly I’ve always been drawn to debates like how a driver finds himself forced to look at roadkill, I’ve now pretty much abandoned the possibility of any common ground amongst the various camps in the autism community because autism is just too wide an issue comprising of thousands of nuances in severity, symptoms, reactions to treatments, sensitivities and beliefs.
But just for closure’s sake, I am going to state right here what I have learnt to accept:
- I don’t believe vaccines cause autism but I do think that there are some children that have some kind of pre-disposed gene that may be made worse by vaccines and this may lead to more obvious autistic traits. I believe Raiyan was born autistic but because he was 7 weeks premature, his immune system was probably weaker and environmental factors may have affected him more and made his autistic traits worse.
- I fully believe in the powers of early intervention and thus parents rather than continuously living in fear and denial over whether or not their child is autistic or not, should just seek help and start their research into the many types of available treatment as early on as they can.
- I fully believe in the powers of ABA or any behaviour modification therapy as the basis and the mechanism to treat the child-whether it’s to treat obsessions, repetitive behaviours, speech, sensory issues, motor skills issues and social skills. I believe that Raiyan worked hard and was continuously motivated not only by the rewards he was promised but by his own successes at the end of it. Of course, the first few weeks or months or even years would be hard but we always have to picture the end goal and providing no verbal and physical abuse are involved, a parent should not have to be guilty about subjecting their child to repeated amounts of teachings and disciplining because we are only doing this to help our children in the future. Susah sekarang, senang kemudian kan..
- I would prefer more energy being exerted to focus on finding appropriate treatment and fighting for governments to provide treatment both medically and educationally rather than spending resources and energy on finding a cause and cure.
- Autism cannot be cured. This is in the sense that you can’t just turn an autistic individual to become “non-autistic”. The autistic way of thinking will always be present and I have always believed that’s what makes these individuals so special that if you even begin to understand it, you would be quick to think how ludicrous it is for anyone to search for a cure to exterminate it.
- Autism however can be recovered and I do believe some parents who have said their child has “lost the diagnosis.” When Raiyan was diagnosed, he scored under average for simple things like knowing the purpose of objects, describing the attributes of things and recognizing basic emotionos because unlike typical children, those things did not come naturally to him. But now, he is able to do them because he has been “taught” it through the therapy. Along with constant teachings of many other things and Alhamdulillah with Raiyan being able to generalize what has been taught to him, Kerri thinks he’s on the way to losing his diagnosis and is quickly catching up with his peers! Having said that, traits like difficulty with social cognition and sticking to rules of conversation would probably always stay and would be something that Raiyan would need to work on for life. Those are the autistic aspects that will probably stay with him but that’s OKAY. Having those issues do not preclude him from leading an independent life. When I talk of Raiyan improving, progressing and even now I am more comfortable with saying, RECOVERING, I am looking towards him growing up to be able to live independently and adapting to situations whilst being able to "handle" his autism along the way. Because I know Raiyan is on the higher end of the spectrum and with how much he has succeeded in the past year alone, why shouldn’t I have such dreams?
I am not writing all this to convince others to share my points of view. More than anything, it serves as a reminder to ME as to how I really feel deep down about all this because I still find myself getting easily swayed after reading the countless amount of autism literature out there.
I need to start focusing on what I personally believe in and not waste further time deliberating about why others do this or that or say this or that. I’m also tired of fearing how others may interpret my blog because I know not all autism parents would agree with me and would still find fault with what I’m doing with Raiyan. But at least, I have tried to make clear my positions on the above contentious issues.
What I would still love to do is find other parents, even if it's just a handful, that are in the same boat as me who-
- strive to keep the picture of autism a positive one;
- accepts that these kids are hard work and require constant dedication and attention;
- understands that no parent is in any position to judge what another parent does;
- do not resort to name-calling or attacking language;
- are not guilty or insecure about their actions over their child for fear of being judged as being a bad parent;
- feel blessed with seeing their children’s progress; and
- celebrates every little achievement (that incidentally would help make it easier to put aside any negative and attacking comments as nothing more than fluff!)
Wishing all pweshes autism families out there a great and fruitful year ahead!! Amin!