Handling Tantrums

This is probably the most stressful trait that autism parents have to face day in and day out. Autistic children’s tantrums are not just your “terrible two tantrums” when a child doesn’t get to buy that new toy that she so desires. Autistic children’s tantrums are extremely, painfully loud, can possibly last up to hours (if you don’t give in) and non-negotiable.

I have mentioned earlier that the most valuable advice I have received from the therapists on this is to JUST IGNORE THE TANTRUM. Firmly say “no”, put on your best “poker, I don’t give a damn” face, avoid eye contact, (my own additional tip-baca salawat banyak2) and just wait until the tantrums die down. If you have other children, especially younger ones, make them leave the room in case they can get negatively affected by the screams.

I know it’s hard because our parental instinct tells us to immediately go to our child who seems to be in such misery. But keep reminding yourself that you are doing this to help him. Treat the “tantrum” as your enemy and as if it is the “tantrum” that is taking hold of your child. That way, this lessens the guilt because you are doing what you’re doing to torture the tantrum and NOT your child. HATE THE TANTRUM!

Stay strong and committed no matter how much louder and prolonged the tantrums are. Have faith that eventually, once the child sees that his tantrum is not having any effect on us, they will stop. I have to be honest that it does take getting used to, and it is possible for the tantrums to last up to an hour and more. But listen, at the end of it, Raiyan stopped and continued on with his life like nothing happened. He wasn’t in the least upset with us for doing what we did. In fact, he was keen to start playing and interacting with us again after being away in his “tantrum world” for so long. Remember autistic children slightly lack emotions or feelings? So you don’t have to worry about feelings of abandonment of your child when you do this.

Don’t bother to negotiate or “pujuk” him. He doesn’t understand what we are saying, especially amidst the screamings, and so you are just wasting your breath and energy. Plus what you are doing is giving him the attention that he wants! Even if you pujuk him in a stern or marah way thinking that this will make him realise that what he’s doing is wrong, you are still giving him attention, even though it is negative attention, so just save it.

This goes without saying but don’t scold him, scream back at him or hit him because not only will you be wasting your breath and energy but you’d waste further time later feeling guilty for being a horrible parent. It’s not worth it.

One trick to help minimise the crying is to try averting his attention to something else but make sure that it is not something that he ALREADY likes or prefers because this will then just send the message that his tantrums leads him to get something even better! Just try to divert his attention to something new. Be creative and don’t feel the need to buy something new every time for this purpose. Sometimes, children get fascinated with the most mundane things, like a bunch of keys or scotch tape!

Another challenge is for you to explain and teach this to your family members because we all have to be consistent in treating his tantrums. If one person gives in then it makes the child realise that “ooh sometimes my tantrums do still work” so he’ll still carry on doing it. Explain all of the above to your family members. (This may take a few times by the way so don’t get upset with them if they failed the first few times).

What to do when the tantrum happens in public? Well, first of all, I’m sure being an autism parent, you have developed some level of thick skin by now so make sure you don’t let the curious stares from the general public bother you. You could first just try ignoring him depending on the intensity of the tantrum. But my best advice is to just take physical control of the child and bring him back to the car until he quietens down. I once had to carry a deliriously screaming Raiyan all the way from the colour pencil section of Hua Ho Manggis, down the lifts, pass the supermarket and to the underground car park (I wonder if there are still people who remembers that scene because I practically felt like the whole of Hua Ho was watching).

But at the end of it all, if the child seems to be in serious pain or despair (and you as the parent will be the best person to judge this) just go ahead and give in. You know best to decide when it’s worth to give in or when it’s not. You also have to realise your own limitations as a human being. If you can feel yourself brewing with rage (let’s face it, who wouldn’t go crazy hearing a child scream even after a few minutes let alone for up to an hour?), just stop yourself before you do something you will regret later. Take a breather and give in and hope the next time it will work.

Again, please remember that this is just something I would like to share because it is something that I have seen work with Raiyan. However, we all know that not all autistic children are the same so one tip is not one size for all.

Good Luck! I would love to hear any feedback!

Louder Than Words

I have a confession to make. I was inspired to write this blog right after reading Jenny McCarthy's book, below:

Some of you may remember her more for being a former playmate, a glamour model, the lunatic host of MTV Singled Out and being equally loony in the Jenny McCarthy show in the late 1990s, rather than being aware of her recent blossoming into becoming a respectable writer. I don't necessarily agree with the ways she portrays herself on TV sometimes because I am kind of a prude. But what I do admire about Jenny McCarthy is her honesty and how she lives her life with the confident disregard of being judged by others. And of course I still thought she's hilarious and absolutely beautiful at the same time.

But now, after having read her book, her beauty in my eyes has radiated a new level of gorgeousness, both inside and out. In "Louder than Words", she heartbreakingly and courageously shares the story of her pweshes 5 years old Evan who was diagnosed with autism at 2 and a half years old and how since then, with her dedication and the supportive people around her, they have managed to substantially heal him for the better (though admittedly, like a lot of other autistic children, he is still a work in progress).

I was so ecstatic to catch her and Holly Robinson Peete on the Oprah Winfrey Show last night and was so emotionally overwhelmed with how open, raw and candid they were about their journey with their autistic children. I will never forget the strong words of encouragement and hope given by them which is "There is a wall around your child, you just have to pull him out of the window". In other words, our autistic children are trapped somewhere and it is up to us to rescue them.

If you can please try to catch the repeat later this afternoon at 1:00pm on the Hallmark Channel. And get your tissues ready!

Week 2 Progress

Sorry for posting Raiyan’s week 2 progress a bit late as these entries should be done every Tuesday since he started his ABA therapy three Tuesdays ago.

Alhamdulillah, things are progressing well. I am learning to notice and value the small details as opposed to unreasonably expecting spectacular results which I have accepted are just not realistic (just shows the kind of impatient person I am!) More of Raiyan’s achievements so far:

1. His imagination in play seems to be really improving. Today he rearranged the sofa set to make it look like a playground and obstacle course and he kept saying he was going down the “slide” on the tilted sofa seat;
2. He’s also more welcoming with trying new foods (this week he tried nasi goreng ayam) and today we were surprised to see him creating his own dish. So it was bread with M&Ms but at least it’s something new and something he cooked up himself!;
3. He’s starting to ease into socialising with new people. For the last 2 late afternoons, he’s been playing with our neighbour’s boys (one of them is in another reception class in ISB so I guess Raiyan was quite familiar with him). They play chase and race each other and today, they asked him if he wanted to come over their place. They also ride their bicycles together around the block. My heart especially melts about this one. On the first day, Raiyan actually came home crying hysterically “my friend! my friend!” because he wanted to continue to play with them even though it was already late... aaww... that especially breaks my heart because it shows that he wants and likes to have friends but i's difficult for him to initiate and even sustain the "friendship".. sob sob..
4. He clearly speaks what he wants (when he knows how to say it), so he will say “I want to play computer please” instead of just crying out “computer!”;
5. He knows the prepositions “on”, “under”, “beside” very well;
6. He knows how to combine some verbs and nouns for example “kicking ball”, “drinking cup”
7. He knows how to point to things with his index finger (whereas before he really didn’t grasp the concept of pointing. If I said, “point to mama’s handbag” he will just pick up the handbag instead. Also, if he was to point to something, before he would do it with his thumb as opposed to his index finger)
8. He’s beginning to learn the concept of taking turns so if I’m playing with him and Alisha, he would understand when I say “Alisha’s turn” and he would wait quietly.
   
9. He will respond “Hello (your name)” if you say “Hello Raiyan” (just don’t say “hi” then you’ll get his usual blank looks!);
10. He can answer these social questions easily:
    a) What’s your name? Raiyan
    b) How old are you? Four
    c) How are you today? Fine, Thank you
    d) Where do you go to school? ISB
    e) Who is your teacher? Mr Holmes
    

Things that we still mainly have to work on:

1. He still has his tantrums here and there but I have to say it’s definitely not as frequent as it used to be. On average, I think he’d have one every 2 days. But unfortunately when he’s in his bad mood, then he’d start being difficult again, like he wouldn’t have his dinner or he could get slightly rough with Alisha;
   
2. He still has his tendencies to gaze into mid-air when he’s bored or seriously thinking about something (other than what he’s supposed to be thinking) when he’s having his therapy;
   
3. He’s still finds it difficult to do pretend play and even still watches TV (when he is allowed to, which is at most 2 hours a day) very passively;
   
4. He still get quickly attached to something after 2 -3 times having it so we continually have to hide things once we notice it’s becoming the “item of the week”;
   
5. His eye contact is improving but still far from good; and
   
6. Overall, continue to work with his language skills.

Syukur Alhamdulillah for another fruitful week! These ABA stuff is TRULY amazing!

Mommies have meltdowns too

Everyone close to me knows that my number one pet peeve is being ignored. I can let a lot of irritating things slide, such as rudeness, snobbishness, stinginess etc but if I’m made to feel ignored, forgotten or insignificant by someone close to me, I will get borderline psycho. The usual culprits are generally men as everyone knows that they never listen and lack women’s standard forms of expressions so for examples, whenever my phone calls get ignored even though they are supposed to be expecting it (or vice versa-they don't call when they promised to), or when I’m talking away and does not get at the very least a nod in response from them or when I feel unappreciated when I know I deserve some appreciation or acknowledgment, that is when my temper flares.

I guess you can say that an autistic child is kind of like the extreme male in the sense that they don’t listen to what the other person is saying to them (but at least in the autistic child’s case, he doesn’t UNDERSTAND what the other person is saying) and them not able to communicate their wants and feelings.

Today was again a not very good day for Raiyan and me but what’s different this time was that I was the one being difficult. I’m sure many women can understand that some days we just wake up and you just know that you’re not going to like yourself very much today. I don’t know what it was. Maybe I was too happy yesterday because Addin smiled at me for the first time so my emotions only had to go down after that. Maybe it’s because I had laksa nyonya for dinner followed by cendol durian so the carbs and sugar badly affected my blood sugar level making me moody. Maybe it’s because Jeff only stayed for lunch for 5 minutes. Maybe it’s still post partum depression after 2 months of giving birth. Maybe the fact that I’m starting work in 3 days time has dawned on me. Maybe it’s because Heath Ledger tragically died.. or most probably it’s an accumulation of all of these things and more. Altogether, I was not in a good mood today.

So there I was, reluctantly trying to do the therapy with Raiyan and am ashamed to admit that I started raising my voice after just 5 minutes. Every time he wouldn’t do what I told him to do (ie. Ignore me), I can feel myself yearning to just blow up but I just had to constantly remind myself that he's only doing it because he doesn’t understand me. I also couldn’t help feeling annoyed with the fact that some of the things I thought I have taught him well already were not coming out today (ie. I felt unappreciated for past things that I’ve done). I tried to continue but shortly after, I realise and accept the kind of person I am and gave up. I was just not up to it today.

I would have allowed myself to be guilty for missing one afternoon session with Raiyan today but at the same time, I have to remember that I also have so many other things on my plate and accept that what I am feeling is a natural thing that I shouldn’t be fighting. I know I should just take a break and again, hope that tomorrow is a better day.

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!

2 steps forward, 1 step back

Okay, perhaps I might have spoken too soon in my previous post because today has been quite a challenging day for Raiyan and me. He came back from school crying and wailing over his ABA who he saw whilst she was picking up her daughter and it went on for almost an hour with him repeatedly calling out her name. I was already feeling really tired from the morning taking care of Alisha and Addin so starting out on a bad foot with Raiyan didn’t make the rest of the day “entertaining” him very appealing.

So it variably went on like that for the rest of the day, sometimes he would follow an instruction as easily as has been in the last week but there were times when he would scream and shout for something too. I think it was partly my fault too as I was admittedly too tired to entertain him continuously (as that is what we are expected to do as autistic children get bored very easily) and the more overwhelmed I was, the more depressed I got.

So to avoid giving false impressions that everything has been going fine and dandy for the last week, I also have to be honest about the regressions that happen too. Today, he cried out for his DVD for almost an hour, he refused to share his toys with Alisha and kept shouting at her and he refused his milk in a glass before he went to bed.

I definitely have to accept that we have to take one day at a time. Here’s hoping tomorrow will be better than today.

Week 1 Progress

I am still in utter disbelief as to how much Raiyan has improved after just one week of having his ABA therapy. He also had his proper assessment done last Thursday with the child psychologist from Australia and Jeff and I learnt SO MUCH after watching the 2 hour assessment session as how to best deal with Raiyan and his unique character.

I have really worked hard in trying to do everything the child psychologist and his therapists have asked me to do and let me tell you, it is worth all the effort because what I’m seeing now in Raiyan is literally short of a miracle.

To be clear, in terms of his speech, it is still going along well but nothing spectacular has happened so I accept that that side of things will probably take its own sweet time. The improvement I am witnessing is the decrease in his autistic tendencies to have rituals and reluctance to new things. For instance, with his refusal to try new foods, armed with the child psychologist’s suggestion to use the only food he will eat as reinforcement for attempting food he will not eat (which is kinda like bribery..), I have successfully managed to make him try 6 new types of food in the last 4 days! These are foods that he has never eaten in his life! Admittedly, the first day was a complete nightmare as I think it took almost 2 hours of screaming and rolling on the floor before he voluntarily but tremblingly opened his mouth to get a taste of his grandma’s yummy chocolate orange cake! But the second day, the resistance was less and by the third day he would say “try a bit” and would easily open his mouth and try the food! Admittedly, this method that I have used may contradict typical parenting advice to not bribe your children when it comes to food as this may lead them to have unhealthy eating habits in the future, but I guess I am willing to take the risk of having a yo-yo dieter son if it means that he can eat like a normal person.

The biggest lesson of all “rupanya” is to act like you don’t care any time he has his tantrums. I wished I had known this earlier because it would have in the past, saved me so much energy trying to negotiate or reason with Raiyan to try and put a stop to his tantrums. And that doesn’t even count the times that we would just give in to his wants because we just could not his handle his screaming and crying. I don’t know why it never occurred to us before but the child psychologist explained that his tantrums is really a cry for attention and an easy way to get what he wants and every time we give in or give him attention because of it, the more he thinks he will succeed every time he does it. So since Friday, I have been practising my serious “poker” face and ignoring him each time he’s been acting like a diva on acid and lo and behold, I can honestly and proudly say that he has not thrown a tantrum in the last 2 days!

So in brief, here is a progress report of Raiyan’s achievements in the last week. I am still so amazed just listing these all out:

1. He has mastered yes and no questions;
2. When he can’t do something or something frustrates him, he asks “please help me” (instead of just screaming non stop until he gets what he wants);
3. His eye contact is very good when he is singing nursery rhymes for me because he wants to see the satisfaction in me seeing him do something good;
4. He has only asked for his animals stuff three times since I have packed them away. Today, I used his animal song book DVD as a reinforcement item and he agreed to switch it off after 10 minutes with no drama at all;
5. He has been eating at the dinner table for all 3 meals of the day for one straight week now;
6. Last night he left his slippers at his grandparents’ house so when he was supposed to wear it today to school, he didn’t cry when he found out he had to wear another pair of shoes (change of routine!)
7. He stopped eating tomato ketchup with his food;
8. He stopped drinking his milk from a bottle before he sleeps and now drinks it from a glass with a straw.

WOW! Syukur Alhamdulillah.. but seriously I never expected him to change for the better at this speed. At this rate, I really do believe in my heart that we can rid of a lot of his autistic tendencies including improving his communication and social skills. I do also accept that it is a LOT of hard work not only on the therapists’ part but also on Jeff’s and my part. But with what I have seen in the past week, the consistent dedication is really worth all the effort.

To obtain more awareness- is it ok to shock sometimes?

I just came across this article in the Brunei Times a few days ago about a relatively shocking awareness campaign in the USA for mental health problems in children including autism which uses the imagery of ransom notes saying autism has the child under captive.

Some autism mothers are obviously not very happy with the campaign because it gives the impression that autism has a criminal or “evil” element to it and is taking over the children as hostages, when in actual fact, well in my opinion at least, it’s never that bleak or tragic. Sure, it is an emotional roller coaster ride for parents to deal with autistic children, but never do we compare having an autistic child to something as terrible as our child being kidnapped. Unsurprisingly, these unhappy mothers have even started a petition to stop the campaign from continuing.

The proponents of the shocking ad campaigns however said that this is the only way we can get people’s attention to start them becoming more aware of what autism really is. I can understand this because sadly, it is human nature to be more initially attracted to or fascinated with something negative rather than the positive. I can also understand why a recent episode of Dr. Phil’s talk show only covered the lows of having an autistic child, so when people see how difficult and sometimes traumatic it is to take care of an autistic child, then perhaps people would sympathise or empathise enough to show more support in helping these autistic children. However, I do not feel this approach is fair for autistic children generally. Apart from the heartbreak and frustrations here and there, autistic children also bring so much contentment to their parents or caregivers. Us parents automatically become so involved in every aspect of our children’s lives that the self-fulfillment for being a parent is just naturally there for us. We never take anything for granted when it comes to autistic children as any achievement, even something as simple as saying “yes” to a question posed to them is worth having a celebratory dinner over.

What I have experienced in Brunei so far though, is that the only way you can reach out to another parent or person to be more aware of this disease, is ONLY if they themselves have an autistic child or they know someone else that has an autistic child. The other parents that I have spoken to unfortunately have given me the impression that: “if it’s not their problem, then they don’t need to know about it.”

I also find some parents who get very uncomfortable when I talk about Raiyan and what he’s going through, like as if I’m telling the most depressing story in the world, when me as his parent, really do not feel that way at all. As I have mentioned earlier, there are many joyful sides to having an autistic child and never have we ever felt that getting the diagnosis was like a death sentence. And yet, whilst talking positively about what Raiyan is going through, all I get from my audience is an awkward silence which leads me to inevitably feel like I have dampened the mood or spoilt the party for everyone.

Therefore, in Brunei, to spread the awareness, I don’t think it makes much difference if you shock or not shock, to tell the positive sides or focus on the negative sides. I just feel like people will only take notice if it is something that they can relate to, and of course to do that, it has to be something that they are going through themselves.

The problem is, 1 in 150 children are diagnosed to be autistic in Brunei and SMARTER quoted that last year more than 50 were newly diagnosed. Overall statistics for the whole world have also shown that numbers have more than doubled in the last decade. So please, don’t even begin to think that this is not your problem. God forbid, (naudzubillah), I am not wishing autism on anybody. I am just being realistic. With the current rising rates, without a cure or lack of proper early intervention, pretty soon, almost all of us will at least KNOW someone autistic. And then you'd be wishing that you have taken more effort to learn about it more earlier.

We as parents of autistic children are not asking for you to take care of our children, or pay for their therapy. We just want you to listen to us with an OPEN mind and help spread the awareness on early intervention because you JUST NEVER KNOW WHO would be needing your help and direction with the knowledge you have.

Bye Bye Ammaws

We sought the child psychologist’s advice on how best to deal with Raiyan’s obsession with animals as his class teacher once said that we can use it as a way to increase his communication skills. She however advised that it is best that we wean him off his obsession, otherwise he might just grow up and become a 20 year old who can’t talk about anything else but animals. Fearfully picturing Raiyan boring a girl to death on their first date with conversation filled with mammals, dinosaurs, reptiles, birds, zoo, farms, wild Africa, the outback etc etc etc, I strictly followed her advice and this morning as soon as Raiyan left for school, I rounded up all things to do with animals and packed them away in a box .

It was only once I rounded them up (and this is just half of the load as the other half is at his grandma’s place where he spends his weekly afternoons), that I realised how obsessed Raiyan was and how borderline ludicrous it was for me and Jeff to feed into his obsession. Again, to try and excuse our actions, isn’t it normal for parents to keep buying or giving their child something that he really likes? We just couldn’t resist the ecstatic look on his face every time we give him something to do with animals. I think it particularly got worse last year because with Jeff away in Singapore, he would come back with all sorts of animal things as naturally the shops in Singapore had much more to offer than Brunei. Coupled with the guilt of being away from Raiyan all that time, each monthly trip always guaranteed Raiyan at least 2-3 items to do with animals. So it’s not surprising that at the end, HALF of Raiyan’s animal collection looks like this:

One way the child psychologist suggested to put his fondness to animals into good use is if we use it as a reward (this is an element of the ABA therapy). So every time Raiyan does something good or something we ask him to do, we can allow him some play time with the animals. And simultaneously, because we are reducing his time with the animals, hopefully he will start to drift apart from them and eventually forget them. And to be honest, Jeff and I are quite sick and tired of animals anyway.

I did feel a bit sad whilst packing the things away though because I know how much it will break his heart later when he looks for them and see that they are not there. I just have to constantly remind myself that he will be ok, he will live and on the whole, we are doing this for his own good.

Besides, the child psychologist warned that it is not surprising that he may move on to another obsession, so for now I’m just going to focus not on my grief and sorrow but on my curiosity on what his next love would be, and then the next, and then the next.. But along the way, I MUST ensure that these interests DO NOT develop into obsessions by non-stop contunuing to show the many variations of things in this world... how exciting is that! Life is never boring with an autistic child!

Tomato Ketchup and Strawberries

When Raiyan first started weaning, I put my Gina Ford Contented Baby Cook Book to good use and for all of its worth. I practically tried out every recipe in it and was so satisfied and pleased with myself when Raiyan would clean his plate after every meal. And when he weighed around 10kg at 10 months, he usually did.

Then came the time when he would become fussy about a lot of things and this included his food too. Every time we keep trying to introduce him to new food he would just refuse to take it. When he refused any kind of sweets or cakes, we thought that Jeff’s secret wish for him to do so actually came true (Jeff is a dentist..). But of course now that we know it is an autistic trait, it is more because of his reluctance to open up to new things rather than his desire to maintain his dental health (following Miriam Stoppard’s advice, we didn’t introduce sugar till about the time he was 18 months).

So began his new food routine of a rotation of spaghetti Bolognese, rice with ayam kicap, rice with chicken soup and rice with kari ayam, all of these loaded with Heinz tomato ketchup and followed by a ball of fresh strawberries EVERY SINGLE MEAL TIME. Since it is our nature as parents to want to ensure that he eats something, ANYTHING, we indulged him in this fixed menu for as long as we can remember.

Most of the time this ritual is tolerable because hey! As long as he is eating, even if it is the same thing every four days, it’s ok by us. But it did become troublesome when we wanted to eat out as a family (which is probably the favourite pastime of all families in Brunei!) He wouldn’t want to eat anything else but chips. So imagine that, everytime we go dining out, all he ever has is chips. Just plain, salted and fried potatoes. Chips. That’s quite worrying right? And with the amount of tomato ketchup he was eating, god knows where the excess high fructose corn syrup was going!

His daily 2 servings of strawberries, which cost $4.80 a punnet, also started to run up the grocery bills because to satisfy his needs, we were buying 8-10 punnets a week! Again, as parents, we would never shortchange our children when it comes to food, so again, we gave in and spent almost half of our weekly grocery expenditure on this exotic fruit. Another problem was because it is exotic and therefore imported, they’re only shipped over once a week so if I don’t make it to the supermarket within a day of it being shipped (which is Thursdays at Supa Save if anyone wants to know), then I’d miss the boat and would have to wait till next week to get the next batch. This means having to handle numerous tantrums at every dessert time for the rest of that week.

Until recently, when there was a point where we kept missing the boat at Supa Save and so he was really left with no choice but to eat other fruits that we have. After the initial tantrums, they became mini-tantrums and pretty soon, he was actually asking to have other fruits! We were so amazed! We found that it is possible to stop an addiction if we persevere.. he hasn’t had a strawberry in almost 3 weeks now!(trust me, for Raiyan, that seems like an eternity).

So wish us luck for tomorrow when we’re going to make the tomato ketchup disappear too! There will be tantrums but we will see through it insyaAllah! Cause one bottle costs almost 5 bucks too and he goes through 2 bottles a week! We need more money to pay for his therapy kali ah!

More about Learning Ladders

As I have mentioned before and time and time again, it is imperative that a child who is potentially autistic or has some other developmental delay, be diagnosed as early on as 18 months so as therapy for him or her can be started early. InsyaAllah this will give them a much, much better chance to recover, become independent and ultimately be able to fend for themselves once they are older. I highly doubt that not all parents would ultimately wish this for their children. I mean you do want to have that dream honeymoon once all your children have moved out right?

Well this is basically the essence of why Learning Ladders was set up (well not exactly the honeymoon bit!), because unfortunately in Brunei, no such early diagnosis can be made. Here, it is basically quite common for a child to get diagnosed around 5 years or even much older because it is only by that time that their speech delay has gone on too long or their somewhat different character has raised cause for concerns to the parents that it then "seems obvious" that the child is autistic. The argument put forward by the medical authorities is that any earlier than that can still mean the child is normal but is developing at his own rate (again, lack of awareness!). There are some mega cautious parents who persisted before the child reached that later stage and took them overseas for a formal diagnosis, so that is another way for you worried parents to use.

And even when such a late diagnosis is made, they are usually very simple, not unlike "Diagnosis: Autism" and that's it. A proper diagnosis from a child psychologist gives a very detailed breakdown of the disorder, highlighting at what level they are at on the spectrum and discusses the strengths and weaknesses of the child so the strong points can be nurtured and the weak points can be worked on.

This is where the difference lies between Learning Ladders and SMARTER, a long established NGO in Brunei that also provides treatment for autistic children. We have a great deal of respect for SMARTER as they are taking care of many of our autistic children in Brunei and providing a sort of "safe haven" for them to go and learn skills to survive in this world. Unfortunately, many of them are of an advanced age whose chances of a major or even full recovery is lower than autistic children who starts therapy at a younger age.

Therefore with Learning Ladders, we highly advise parents to:

1. get an assessment done with the visiting child psychologist that we bring in,
2. get the early diagnosis and
3. get recommendations on treatment that caters for the individual child.

Parents can then take away those recommendations and choose to:

1. get a qualified ABA (like the one Raiyan is using now) to start a new therapy programme taking into account the diagnosis and recommendations given by the child psychologist; AND
2. EITHER get a part time therapist (there are a few that Learning Ladders can get you in touch with) to follow that programme;
3. OR you follow the programme yourself and teach your child at home (you can get grandparents, siblings, maids involved too).

If you choose option 3, another great thing about Learning Ladders is that we have a large selection of books, toys and equipment to help with the therapy that members of the society can share. (Basically, the membership funds goes into funding these things we share plus the travel arrangements of the child psychologist).

By the way, as of today, there is still one free slot for the child psychologist on next Tuesday afternoon, if anyone is interested....

I hope I have offered enough information on Learning Ladders so that you readers can spread the word on this society and it's worthy cause. Thank you so so much!

I want ORDER!

This was when Raiyan was about 2 and a half years and obviously during a time when we thought he was just anal and petty about things having to be in order. Little did we know then that the autism causes Raiyan to have the necessary desire to have everything in order.

So please forgive us nasty, bullying parents who are seemingly torturing him by re-adjusting the balls that he insist should be kept in place together. You still can't deny the fact that it was funny though!

Item of the week

Autistic children are also known to get extremely attached to things. Raiyan has never had any one single item that he loves but what he does is get attached to something for a week or so and then move on to something else the next week.

He will get so attached to the item that he’ll have it with him everywhere he goes whether it’s all around the house, visits to the grandparents’ houses, to school, to the shops and as you can see from the pictures below, even the zoo. The items can be anything, which in the past have ranged from a bag of certain colour pencils, bag of small figurines, bag of small books, book of the week (this is the most frequent), mini posters, DVD covers and many more.

Every time we leave the house we would have to make sure item of the week is already in the car to avoid him screaming out for it when we reverse out of the garage. Our Indonesian maid is compelled to memorise the names of these various things AND in the way he calls them too so that if we forget to bring it, she would know exactly what it is he wants and goes back into the house to get it for him.

When we are out and about only one parent can hold Raiyan’s hand because his other hand is busy holding the item of the week. When we are eating out, there has to be room on the table to place his item of the week. When he goes to school who do not encourage students to bring things from home, we have to get special permission from the teacher to make the exception for him because he just refuses to leave the item in the car. When we're at the playground or jungle gym, he has to manouver the slides, swings and obstacles with the item of the week firmly in one hand.

As you can imagine, it could be quite an inconvenience, especially this one week where he was loving these mega blocks that he had to bring along to the Singapore Zoo. Inda lagi alang-alang banyaknya tu! It’s not enough that we have to take care of our 3 children when we go out, we have to worry about the item of the week too!

at the zoo and in the car holding his fave items

Learning Ladders

I am so deliriously happy to be able to convey this next piece of news.

Jeff and I attended the 1^st meeting of Learning Ladders, a society for early intervention for autism and other developmental and learning disabilities, a non-profit organization whose mission is to: [this is quoted from their brochure]

Help in connecting families with qualified and experienced professionals ;

Offer assistance with the provision of Home-based Therapy using scientifically proved methodologies;

Provide information, resources and support to families affected by autism and other developmental disorders

Educate parents, carers and the general public on Autism and Other Developmental Learning Disabilities

And as you can see from the first letter of each line above, joining this society is also giving Jeff and me much hope in the road of recovery for our dear Raiyan.

After joining the society, the first step we are taking is have Raiyan get a proper and informed diagnosis from a child psychologist with the Intervention Services for Autism and Development Delay (ISAAD) who is based in Perth, Australia. When I was saying Raiyan was diagnosed recently, technically speaking, we merely got the professional opinion of the Applied Behavioural Analyst but not a formal diagnosis as this can only be done by a child psychologist who will in turn write a very detailed report breaking down the strengths and weaknesses of the individual child. Recommendations are also given to the parents on what the best treatment would be, catering specifically for that individual child.

So basically Learning Ladders has arranged for this child psychologist to come to Brunei who will be here from tomorrow for 9 days. Anyone reading this and interested to get an appointment, please do not hesitate to email me for more details and I will be MORE than happy to direct you to Sharina or Linda, the President and Vice-President of Learning Ladders.

Even within the discussions of the society this afternoon, it could not be stressed enough as to how important it is to get an early diagnosis (and a PROPER diagnosis which unfortunately you are not able to obtain in Brunei otherwise) so we are highly grateful and eternally indebted to Learning Ladders to help arrange for ISADD to come over here and provide their services. Don't worry however if you are not able to do this now as Learning Ladders are planning for ISADD to come here 3 times annually, so they will hopefully be coming back in 4 months time.

To Sharina and Linda, if you are reading this, thank you so much for pioneering this much needed group. Jeff and I were so inspired to hear the progress stories of your children and was so in awe of your dedication and highly positive outlook into the future of your children. We are also so amazed with how much information there is out there on autism that you shared with us.

Seeing you guys have only motivated me to strive harder to disseminate as much information as I can to provide more awareness on this rising epidemic.

It's all about balance

This was Raiyan at our big family gathering of about 500 plus people at ICC in late 2006 and I remember getting so angry at him for causing such a mayhem because the colour pens he had so carefully "constructed" into a long tower kept breaking off (well naturally, they're not meant to be used as legos!). Plus he was running around the place so it was even more inevitable that his pen tower will fall!

Oh and the screams... the gathering was held at the main conference room which is huge and has a high ceiling so you can imagine how magnified the volume of his screams was EVERY TIME his pen tower broke off. Afterit broke, he would put it together again and the vicious cycle goes on. It happened around 10 times before I lost my patience and decided to cut our presence short and left for home as the whole room was just staring at us and wondering why this boy kept losing his temper every 60 seconds..

This was probably when I got the most upset with Raiyan ever, because I just felt so humiliated from all the unwanted attention he drew. I just couldn't help thinking of what a "weirdo" my son was and equally felt so frustrated not knowing why something simple as his tower of pens falling over would get him so insanely upset. Well now I know that lining up things etc is an autistic trait, I can't help feeling guilty for the way I behaved. Now I know he just couldn't help himself. So since I've known, I let him indulge in his lining up things and having them break off pattern as much as he can.

Arts n Crafts improved

Just when you thought matching the colour cassettes with the colour pencils was a tad strange, Raiyan brings us a step further into his obsession with colours and fondness of lining things up. This time round, he actually inserts the pencils into the holes in the colour cassettes and places them on the matching coloured floor pads!! Fascinating huh!

Arts n Crafts

Raiyan is displaying 2 typical autistic traits here. First, this was during a point in his life when he was obsessed with colours and anything to do with colours, which was why we bought him those paper colour cassettes in the first place.

The second trait is his fondness of lining things up and in this case matching the colour cassettes perfectly with the matching colour pencils.

Aah bless him looking so proud of himself next to his handiwork...

So what did you do today Raiyan?

If you have noticed, I posted a link to this other blog that I manage (surprise, surprise!) on behalf of the children where it seems as if it is them that are telling their stories themselves. Of course you must have figured out that Raiyan has absolutely no hand in those blog entries because sadly he can't even tell ME stories!

There is not a minute every day that I don't crave to have a chat with Raiyan. Everyday he would come back from school, I would ask him what he did at school today, only to receive a blank look and at best, an answer in an incomprehensible language that I wish I have a translator for (or "nonsense" language as the ABA would call it).

He once had a school trip to the fire department and I remember seeing all the other kids animatedly telling their mommies and daddies what they saw and what they did whilst my heart was crushed sitting in silence in the car with Raiyan, who as expected was not sharing with me his experience that afternoon.

Sometimes I do worry too when I pick him up from school and he seemed more subdued than other days. At his old school, I notice this especially when his class teacher was on sick leave and he'd have a substitute teacher instead. I don't want to jump into conclusions but I have heard some of the teachers in his old school scream at some of the kids and so it's not far-fetched for me to think that Raiyan may have been in the receiving end of one of those screamings, especially since he's not able to fully understand what the teacher is telling him. What I fear more is if someone actually hurts him and he's not able to tell me what happened. I have another distant cousin who's 4 years old and also doesn't know how to talk (not diagnosed as anything to date) and his parents stopped him from going to school cause he kept coming home with bite marks and bruises but no explanations. I can only continue to pray and have faith in the goodness of people so that no harm will come Raiyan's way for he is such a sweet and delightful boy who has never intentionally harmed anyone in his life.

Perhaps the worst thing is sometimes I feel like I don't even know Raiyan myself. I don't know what he's thinking, don't know why he likes the things he does, why he hates the things he does, why he does the things he does... and when me being the mother who's with him every day and night already feels this slight estrangement, what hope do I have for other people or new people he meets, to understand him?

Nevertheless, I like to look at the bright side of things and you know what? there is actually one good thing about Raiyan's lack of story-telling skills.. he doesn't tell people embarassing stories about his parents and so Jeff and me can still live our lives without having to worry about our doings being reported to others! Hahaha!

I can stop blaming myself now

Another consquence of there being lack of awareness for autism in Brunei is that whenever people see an autistic child, they automatically assume that their behaviour is due to a fault by the parents. This is because autistic children look completely normal. I will even go as far as saying that most of the ones I have encountered are actually very blessed in the looks department! Therefore, when others see them behave erratically the way they do, in particular when they are throwing tantrums, people automatically look at the parents and make the quick judgment that it is the parents that have no control over the child. The situation is different with children who suffer from down syndrome or any other disability where they obviously look ill. In contrast, their parents would often get looks of sympathy, which again is still a form of judgment, but hey, it's better than being thought of as an irresponsible parent isn't it?

I still remember my aunt (mother of my 14 year old autistic and also verrry handsome cousin) telling me that back when my cousin was a toddler and when the awareness was probably less than zero, in her search for a diagnosis, one nurse actually had the nerve to say "anak kita ani cemani pasal ada yang kita buat bah tu..." which basically sums it all: people generally think it is the parents' actions that have somehow led to their children being autistic.

Raiyan was my first born, so apart from reading Dr. Miriam Stoppard books and babycenter.com, I did not have much knowledge on how to raise a child. Following their advice, I would try to stimulate Raiyan as young as possible by showing him brightly coloured toys, putting on classical music and basically talk to him and make everyone else talk to him as much as I can. As he got older, we exposed him to more advanced toys, including wooden puzzles and books, lots and lots of books which we were happy to see he showed much interest in. And yet, when he still wasn't talking, Jeff and I kept asking ourselves "what are we doing wrong? what are other parents doing that we aren't?". Raiyan is also very LOUD. When he cries in Gadong, you can hear him in Berakas. So when he has his tantrum, it is for the whole country to hear. And again, judge. Because of that, Jeff and I would think that maybe we spoil Raiyan even though we really believe we don't. Nevertheless, we got stricter with Raiyan and scolding him became a normal thing as early on as he was 2.

It was especially stressful because before Raiyan was diagnosed, we didn't even have a reason as to why Raiyan was like that. Everytime people approach him and then notice that he is "different" we are compelled to just sheepishly respond by saying "awu andang balum pandai becakap" or" or "andangnya ia ani pemilih/fussy sikit" blah blah blah... I don't need to be a mind reader to know what they thought of me as a parent. It doesn't help that I'm the type of mother who must dress up and wear make up everywhere I go.

So you can imagine the bittersweet relief I felt when the ABA told us that autism is mainly genetics and there is no way I should blame myself for Raiyan being the way he is. She made Jeff and me feel a million times better by further saying that without all the attention we have given Raiyan all this time, he could be in a worse position than he is now. Holding back tears from being an insecure mother for 4 years, I thanked her from the bottom of my heart for her words of assurance.

I reiterate that the earlier we go the better it is for the child. At the same time, you can also prevent further heartbreak to yourself thru forever questioning what it is you're not doing right etc. I'm sure you are already doing the best you can. The only better thing to do is to refer your child to someone who knows how to deal with him/her the way they should be dealt with.

A little history

Raiyan was born 6 and a half weeks premature on 2nd June 2003. Despite being born pre-term, syukur alhamdulillah, he was a healthy weight of 2.54kg, had no complications except for the slight jaundice and only stayed in the special care unit for half a day.

Because he was born 6 weeks earlier, we somehow automatically accepted from the start that he was going to be 6 weeks "slower" than his peers. And in a lot of ways he did. If I recall correctly, he was about 4 months when he really could hold his head up, he socially smiled and made considerable eye contact around that time too, walked at 13 months and the biggest delay of all, said his first word "turtle" at 26 months. And when we checked the "typical" milestones of other babies, apart from the talking bit, he was usually about right to be 6 weeks behind. Naturally, the speech part was very worrisome even though a lot of people just brushed it off by saying that it's normal as children develop at different rates from each other and since he was born premature, it would be logical to accept that he would be slow in talking too. We were repeatedly told to be patient, pray to the Almighty and in his own time when he is ready, Raiyan will start chatting away. Furthermore, apart from not being to able to talk, Raiyan seemed very normal otherwise. Very active, playful, was not afraid of other people, very affectionate and loved to cudle, had a very healthy appetite and generally did not look or seem any different from other babies his age.

As you know, our worries did not stop but instead just grew more. I specifically remember this one time after I was reading an article in Mother & Baby magazine about a mother finding out her son was autistic at 18 months, when he seemed perfectly "normal" before that. She described the experience as watching her son withdraw into his own separate world and in turn dissociated himself from everyone, including heartbreakingly, his own mother. One of the signals warned by the article was lack of eye contact and not responding to their name being called. Soon after putting the magazine down, I started calling Raiyan who was only 4 physical steps away. "Raiyan..", no response. Let's try again. "Raiyaaannn..." (in a sing-song tune) and yet again, na-da, no response. One more time, shall we? "Raiyannn..." (becoming slightly more impatient and panicky now) and yet, Raiyan did not turn towards me. After a few more times, I just went up to him and sat in front of him to which he finally looked up (yeah, yeah I know that doesn't count). I immediately called Jeff and sobbingly blurted out my strong suspicion that Raiyan is autistic. Since Raiyan was only 17 months at that time, and being the lovely, reassuring husband that my husband just is, he said to not worry as it is still too early to tell and we can't make assumptions just based on lack of eye contact.. Plus, maybe Raiyan was just really preoccupied with what he was doing at that moment I was calling out for him. Not knowing any better, I believed him and tried to put autism at the back of my mind. (It did linger around from time to time, mind you. The "uri" ness of women and especially mothers just entails such behaviour).

As I mentioned in my previous entry, Raiyan went to CDC for a year and sporadically a few times after that but no one ever mentioned even the possibility of him being autistic. We even brought him to a number of paeditricans who very confidently also ruled it out. This is precisely what I mean about the lack of awareness in Brunei because I think a lot of people just picture autistic people to be extremely unsociable and completely mute etc, which granted does happen in serious cases of autism. Raiyan is still a very friendly boy and he does know how to pronounce a lot of words which probably justifies the misdiagnosis. What we were not aware of and I'm sure this goes for a lot of people, is that autism spectrum disorder is a "spectrum" which means that autism ranges from the extreme worst to the mildly affected.

Another reason as to why we may have missed the signals was that we also took great comfort in Raiyan showing his intelligence in a lot of other ways and to us, this means progress. By the time he was 3 and a half, he was reading 6B of the Peter and Jane books, he could count up to 50, he had completely mastered the skills of using the computer, including playing games on the internet and searching for his favourite things on google, he could write out the whole alphabet and all the numbers and he can practically name every animal that exists or used to exist on this planet. This progress meant for us that there is improvement as time goes by and so with a little more patience (and again, with many assurances from others that he will be ok in time), we would eventually get to where we want Raiyan to be.

What is also confusing about autism is that some of its symptoms (which will be elaborated in separate entries later) can also be practised by "typical" children so it is easy and forgivable to mistake some of their traits to be mere quirky personality traits that us parents should not spend our energy worrying over. In Brunei also, we have a common term we use called "paingan" where a child would do a particular action repetitively but is generally considered harmless. Hence, it is easy to confuse repetitive behaviour, which is a common autistic trait to just be another "paingan." With Raiyan, what stood out for him was his anal and perfectionist behaviour in that he likes all things tidy, clean and organised. Because his father and grandmother are famously known for their impeccable organisational skills, we naturally mistook Raiyan's behaviour as an inheritance from them.

In the end, for reasons of:

1. calculating his milestones later than normal because he was born pre-term (perhaps a tad too late!);
2. completely relying on CDC and the paeditricians' opinions;
3. listening to naive reassurances that Raiyan will eventually start speaking normally "just like this one kid they know" and;
4. our subconscious denial about there being anything wrong with our son apart from having some harmless delay;

we regrettably diagnosed Raiyan to be autistic at four and half years old when the typical diagnosis time should be around 18 months, which ironically was how old Raiyan was when I read that Mother & Baby magazine.

I can understand that it is our culture to not cause parents unnecessary worry by telling them that there could be something wrong with their child at such a young age and uncertain time. This is also a natural thing to do as they do not have a better understanding and awareness of what autism is. But it is so important to detect autism as early on as possible as there is a better chance for them to be as normal as they can be if they started treatment earlier on. Sometimes I still feel like kicking myself for missing out 2 years of valuable therapy for Raiyan. But I didn't know any better right? That is why I hope the same mistake will not happen to any other parent who reads this. First and foremost, you as parents know your child BEST so if you have any suspicion that something seems wrong, JUST GO AND CHECK IT OUT. Read up the countless websites on autism and compare the symptoms listed with your child. You will be amazed with what you can learn. I know I was! And remember, because of the unfortunate lack of awareness of autism in Brunei, don't take others' words of reassurances wholeheartedly. They don't see your child every day so how are they supposed to make reliable conclusions right? This is realy crucial because the earlier you check it out and manage to get a proper diagnosis, then insyaAllah, your child can start his road to recovery sooner rather than later.

Introductions

Let me first declare at the outset that I am by no means an expert in autism. I am not sure what makes one autistic, I have no idea what causes it, and more importantly, I haven't a clue on what to do to make it go away (in fact, I don't actually think it can ever go away..)

All I know and would like to do is share with you "autistic" tales of my beloved and gorgeous 4 year old son, Raiyan who was recently ( and finally) diagnosed to have the autistic spectrum disorder . Since becoming an "autism parent" in this age of internet technology, I have unsurprisingly been googling bits and pieces on autism as much as I could, in particular reading up the symptoms patients with ASD have and stories shared by other parents of their special children.

From my reading, I was also astonished to discover that there is 1 in 150 children in Brunei that suffers from autism or autism related disorders and yet I knew so little of it prior to Raiyan being diagnosed. I mean I knew autism existed as I have a cousin who is autistic but apart from knowing that it caused him to not be able to speak properly and constantly walk on his toes when he was younger, I knew nothing else. Whatever the case, I doubt anyone can deny the worryingly high statistics considering our small population.

In all honesty, Jeff and I did think Raiyan was possibly autistic as he still did not speak understandable language by the time he was 18 months, so that was when we brought him to have a year of ocupational and speech therapy at the Child Development Centre in Kiarong. However, in all those times Raiyan spent at CDC, not once was he ever diagnosed as having autism so being the relieved parents that we were, we quickly (perhaps admittedly too quickly) shoved the notion under the carpet and hoped for the best.

Though we did witness some progress thereafter, in particular he managed to build a vast amount of vocabulary and was even able to read before he turned three (!!), in the end, we were still highly concerned that at 4, he still wasn't able to have a conversation and was still speaking his demands using 2-3 words at most.

For that reason, we decided to shift him to ISB where we thought the learning process will be different from his previous school which we found was only really good in helping him read and write but was absolutely useless in helping him improve his communication skills. It was Raiyan's teacher at ISB who then referred us to a mother of Raiyan's classmate who, thank our lucky stars, is an applied behavioural analyst. It was at the first consultation meeting between her and Raiyan in early December that she told us in her professional opinion that Raiyan does indeed have ASD. We then briefly discussed therapy arrangements for Raiyan, which she advised should be as intensive as possible in these early stages (she actually said it would be preferable to start therapy at 2 years old but at 4, Raiyan is still well below the possible maximum age of 6, so hopefully there is still much hope for his case). Due to the unavailability of both herself and another therapist who works alongside her in December, we then decided to start immediately in the opening of the new year.

So tomorrow, when Jeff drops off Raiyan at school on the first day of the second term, he will be receiving the ABA programme prepared for Raiyan and insyaAllah, this journey for the betterment of Raiyan will officially commence.

Through this blog, I will share not only Raiyan's tales of the past and present (some of them, I am ashamed to admit are quite amusing actually!) but more importantly, I will share Raiyan's experience with the ABA treatment he will be going through in the hopes that I can help other autism parents to see and then choose if it is the kind of treatment they will be interested in.

Wish Raiyan loads of luck!