Busy Busy Busy

I have seriously been feeling so unsettled for not having updated this blog in quite a while. There has just been so many other things floating around that has caught more of my attention and just sorting through and prioritising all of these affairs took up so much of my time that I just lost focus on what to blog here!

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”

2 heads are better than 1-Part II

The Brunei Times ran an article on the Society again today, entitled "New Society Offers More Choices"briefly describing the main differences between Learning Ladders and the pioneer autism NGO in Brunei, SMARTER. I am personally not surprised that such an article was published shortly after our official launching because admittedly, this must be a query that goes through a lot of people's curious minds, especially since SMARTER has made such a large contribution to the cause in the Bruneian Community to this date through their countless fundraising activities and awareness campaigns (hence why does Brunei need another society to deal with autism?).

As explained by the article, the main difference between the two organisations is the type of therapy available for the children. Learning Ladders use ABA and SMARTER (quoting the President) use Independent Living Skills. First tip to parents: Google the 2 types of therapy and study what each type is all about.

For those who are not really in the know about autism spectrum disorder, there are many, many types of intervention strategies avaialable and specific to autism. To name a few, there are Applied Behavioural Analysis, Applied Verbal Behaviour, Eclectic Teaching Methods, TEACHH, Floortime, Speech Therapy, Music Therapy, Art Therapy, Sensory Integration Therapy, Occupational Therapy, PECS, Biomedical Intervention and many others. As you can see, parents are faced with many different options to choose from in finding what's the best method for their child. REMEMBER, autism is a spectrum so no one autistic child is similar from another so one can benefit from one type of therapy and another can benefit from another type.

I sincerely do not want to enter into a debate over this matter but simply to say that in our circumstances and in the circumstances of the other families of Learning Ladders, we have tried some other kinds of intervention but after not seeing any progress with the children, decide to seek something else. And Alhamdulillah, fortunately for us, we discovered ABA worked wonders for our children. [At the same time, we completely acknowledge the fact that it may also not work for other children].

Seeing the success with our own children, it is thus natural for us to want to share this discovery and let other parents in with the opportunity to try it if they are still seeking ways to improve their child.

Please, I appeal to all the curious minds out there, just try to understand the rationale behind the society to be JUST that. This is about the children. About providing the best chances for these children to flourish and live a fulfilling life. Let's leave all the politics to Clinton and Obama for now okay?;-)

Learning Ladders on RTB News

RTB news ran a short segment on the Friday night news on Learning Ladders Society giving a brief insight into what we do... We actually had the shoot on Friday afternoon itself and didn't realise at the time that it will be broadcasted later that night! Otherwise, I would have given advanced notice of it on my blog...

I hope a lot of people still managed to catch it (I have faith that other Bruneians watch the national news more religiously than me!) as it helped explain exactly what Learning Ladders does in terms of the type of therapy we provide and also clarified on the fact that we CONNECT parents to professionals and these are professionals who have had 20-30 years experience with autism and other related disorders.

Our hero, Kerri Wilson (she was actually named in the news so I guess I no longer need to refer to her as "K" in my blog anymore) also gave a short interview (oooh, that makes her sound like such a celebrity! hehe but she IS in our books! We are so proud of you Kerri!) explaining what ABA is about..

We're still trying to get a copy of the video and once we do, I will post it on the blog. In the meantime, check out some pictures of the day over here..

Thank you to all the parents and relatives who came on that day to show your support! We really x infinity appreciate it!

World Autism Awareness Day

As declared by the United Nations in its Third Committee Resolution approved by the General Assembly on 18th December 2007, TODAY the 2nd of April has been designated as World Autism Awareness Day and is to be observed every year beginning this year.

On this momentous day (or in some countries, starting from today and continuing throughout the whole month), member countries, including Brunei Darussalam, are urged to raise public awareness of autism and also to take measures to raise awareness throughout society, including at the family level, regarding children with autism.

Be sure to look out for special programmes on CNN, get inspired by reading news articles on what other countries are doing in carrying out their obligations under the resolution and more importantly, spread whatever knowledge you have about autism (including the mention of visiting Raiyan's blog ;) maybe? .. heehee).

Remember the key points to inform others of are:

• There is HOPE!
• Early diagnosis and intervention is very important to kickstart the child's journey towards improvement and even recovery;
• Intervention or therapy should be a programme based on what works for the individual autistic child;
• Autistic children are not in any way worse than or not good enough as typical children! Even though autistic children may lack some qualities typical children have, they also have their own unique and special qualities that society really need to start focusing on.

Also, Learning Ladders are actually planning to organise a one day awareness campaign some time this month but unfortunately, was unable to hold something today due to shortage of resources and time. I will provide more information on our special event as and when there is development on it :D.

We would really appreciate any support that we can get! But in the meantime I would be grateful if my beautiful readers can use the power of word of mouth and spread ALL the knowledge that you have on autism to anyone you know! Everybody else in the world is doing just that!!

Larry King Update

Apologies for my previous post about the timing of the Larry King Episode on Autism. Rupanya, that was following CNN USA's programming when for CNN Asia the timetable is completely different.

The next showing, following this page will be at 6:00pm later. If you go to the page, it will give the full listings of when the show will be repeated.

Happy Viewing!

Autism discussion on CNN's Larry King Live

The previously postponed episode on Autism by Larry King is now scheduled to be shown on Wednesday 9pm Eastern Time, which if I'm not mistaken, will make it Thursday Morning 9am Brunei Time.

The theme of the show is "The Heartbreak... and the Hope of Autism" and he will be interviewing teenager Jason McElwain who is living with the disorder along with the famous autism advocates/parents, Holly Robinson Peete, Doug Flutie Jr and Toni Braxton.

Hopefully, the show will help raise more awareness on autism and in particular, giving hope to parents in the positive progress of their child!

One therapy is not one size for all

I was excited to read this article this morning as it was about a case in our neighbouring Malaysia, (the google news feeds on autism usually derive from the western side of the world). I don't know why, but wouldn't you agree that somehow we always feel more interested to know more if it involves someone of a relatively similar background to us?..in this case, it's another South East Asian family.

What I'm most pleased about upon reading the article is that both Lim, the mother and Mary Ann Joseph, a seasoned therapist in KL, used behavioural modification therapy (ABA) as the main method of therapy for autism (along with a combination of others, where it is apprpriately needed, like sensory integration). It's important to remember that not one therapy can be effective for all children with autism (no one size for all), but with the number of available options out there, I can't help but agree with what Lim said, which was "“We owe it to our kids to at least try each therapy”. The article listed out behavioural modification, mediated learning, speech therapy, sensory integration, brain gym, play therapy, music therapy, biomedical intervention and diet intervention as some of the available options out there. (Though I think it's best to not try them at the same time because if you do see progress, you would only be able to pinpoint the right source if you try one therapy at a time. If treatment is mixed and your child does show progress, you can't ever be sure which particular one is contributing to the progress). Alhamdulillah, I am lucky in that I am already seeing progress in Raiyan from the first type of intervention therapy that I tried, but I can understand that this may not be the case for other families.

I admit I have yet to visit SMARTER myself to see the available therapies they have to offer there. However, I know some parents that have sent their child there but found that the therapy did not work with their children. Hence, their need to look elsewhere. As I have previously explained, the circumstances around Raiyan led us to K, his ABA therapist first which sort of precluded our need to go to SMARTER (for now). Syukur Alhamdulillah, the ABA therapy seems to be working well with Raiyan and he has made incredible progress to date so I will continue with that until if ever there is a point when Raiyan may not necessarily benefit from it anymore. If that happens, THEN it would be very helpful for me as a parent to be given other options to try, which may include those offered by SMARTER or other forms of therapy that is not already available in Brunei that Learning Ladders will try to introduce in the future.

This is another reason as to why Learning Ladders was set up. Not just to provide the means of getting an early diagnosis through ISADD as I have explained in previous posts. But to lay out more therapy options for parents out there to try. For those parents that have been sending their children to SMARTER AND have been seeing progress with their children through the therapy there, then Syukur Alhamdulillah, you have found the type of intervention therapy that works for your child. But for those parents who still have a niggling feeling that more can be done with their child by trying something different, I would personally highly recommend you just try out behavourial modification therapy. If it doesn't work for you, then at least you can strike it off the list and then move on to another available option right?

So Heartbreaking

It's happened again. Obviously we don't know the complete details from the authorities yet but since the news quoted past "similar" incidences, one can't help but assume it's another "abandoned baby" case..

I just cannot understand why anyone would do this. Yes, I know of excuses that they probably can't take care fo these babies. OR in the case of teenage pregnancies, they are ashamed to tell others they've had a baby.

BUT THERE IS ABSOLUTELY NO EXCUSE for stuffing them in a plastic bag and dumping them in an isolated place AND LEFT TO DIE.

It's just too heartbeaking beyond words, especially when you think of all the couples that would do anything to have a child but aren't able to do so.

As a parent, I completely and utterly believe that a child is the best gift that can be bestowed upon us humble beings. They are true miracles placed before our very eyes that we should never take for granted. A child not only brings us immense joy and happiness but is always in the position to teach us adults things, however small, and more often than not, we underestimate the special and precious qualities they bring into our lives.

Which can't help make me question some people (ie. "animals") who has "underestimated" to this extent and has come to this point. This has unfortunately happened quite a number of times already in the past few years.How already lucky must these people already feel that they are able to throw a miracle of life just ilke that. I just do not understand.

TV shows linked to autism?

Back in the days when I questioned all sorts of things that may have caused Raiyan’s speech delay, one thing that I grew very suspicious of was television, in particular the DVDs that he was watching from early on as 10 months: Baby Einstein.

What first brought my attention to the possibility of television causing a delay in speech was after Jeff read an article saying that it seems to be more than a coincidence that the rise in autism rates has occurred simultaneously with the introduction of cable or satellite TV and children shows easily found in hour long DVDs or VCDs. The argument is that when children watch TV for such prolonged periods, they get used to not having the need to respond when spoken to because a TV is a two dimensional being that does not expect a response or a reaction from the children. When I heard this, it kind of rang a bell and it especially struck me that Raiyan especially liked watching the Baby Einstein range where there was hardly any talking, just scenes of colourful toys etc played with classical music in the background. (This recent article I found was not encouraging either ) I must say that Raiyan was really into his Baby Einstein DVDs, so much so that I bought 75% of the whole range (and they aren’t cheap as you have to order them from Amazon) and he would watch it even at 4 years old! But after reading the article, I was more worried because the Baby Einstein shows was not interactive at all so it is very possible that that could be a cause in his speech delay.

But at the same time, I also liked what Baby Einstein DVDs was doing for Raiyan’s “intellectual” side (at least at that time, I thought that it was the DVDs that at least stimulated it) as he was able to tell which songs are Mozart or Bach or Beethoven (whereas I for the record have absolutely no idea). He was also really good with wooden puzzles and any games that involved problem solving which again, I thought was brought on by him watching Baby Einstein. Of course since I now know that autism is genetics, and some autistic children are known to be savants, he could have been into that kind of stuff even if he wasn’t exposed to the Baby Einstein range.

SO, now that I know that Raiyan is probably the way he is more than others, because of genetics and not television or Baby Einstein, I thought that they would be safe to show Alisha. Alhamdulillah, I can safely say that at 18 months, Alisha seems to be a normal girl, talking well, communicating well, playing pretend well, good eye contact etc etc. I was then surprised to discover that she has NO INTEREST whatsoever in the Baby Einstein DVDs. I’m not sure if it's because we started her at a late age but she just watches 10 seconds of it and gets bored.

So my twist to this story is: for those people that say the Baby Einstein or Baby Brainers range etc are contributing to a speech delay in kids, try considering MAYBE, just perhaps, it’s because children that are bound to have a speech delay anyway, i.e autistic children, are more attracted to watching those TV shows as opposed to “typical” children… Has anybody thought of that?

Overall, I do believe that any child or toddler shouldn’t be overexposed to television anyway. I mean it is common sense that if you put a child in front of the TV for hours and hours, he or she is going to become passive and will eventually get used to not having the need to say anything just like what he or she does when they are watching television. I think 2-3 a hours a day should be acceptable because I also believe that a lot of TV shows out there are very educational and can immensely help a child’s vocabulary and language development.

As for Raiyan, I have naturally banned him from watching anymore Baby Einstein (can you believe he would still watch it now at 4 years old if I was to put it on for Alisha??!!) and any other shows that I find are too “babyish” for him like Blue's Clues or Dora the Explorer. I’ve actually started him on cartoon network to watch TV shows that have story lines and dialogue in them to help him with his imagination and also a better understanding of emotions and feelings. I can’t believe I’m letting him watch Spongebob Squarepants which all this time I swore I’d never let him watch such rubbish!! Hey but it helps him now!