Bye Bye Tantrums

efore he was able to communicate his needs appropriately, Raiyan was infamous for his extremely loud cries. One of my girlfriends also commented how his loud voice was so unique and how it seemed to have different layers and facets too it (like a soprano layer, a bass layer, a tenor layer and a baritone layer if you care to imagine!). It was so loud that we always gave in to his needs as we just couldn’t find a way to make him quite down otherwise. If we happen to be outside and in public the only solution was to just carry him and whisk him back to the car.

Apart from the pain of having to tolerate the volume of his screams, it was far more distressing to feel helpless and not know exactly why he was throwing his fits in the first place. Often, we had to play the guessing game, the elimination game and we had gotten really good with inferences and assumptions by the end of it.

The golden lesson we learnt when he was first diagnosed and when he started his therapy was that we weren’t supposed to pay attention to the tantrums and better still, we completely ignored it. You can imagine Raiyan’s screams practically filled the house non-stop for the first two weeks or so when we employed this new trick. Alhamdulillah after persevering through, his tantrums indeed lessened within time as Raiyan soon realized that he wasn’t getting any reaction out of them. I guess it must have been strange for others to see when we did this in public since it is a natural instinct for parents to talk and console their child to try and make them feel better. As careless and evil as we looked, our faith in the technique grew more and more within time as Raiyan was seen to gradually move away from the excruciatingly loud screams to now a barely heard inside sob accompanied by whines and moans specifically telling us what it is he wants.

He’s been tantrum free for quite a while now that I think we’ve started to take it for granted. So it was a proud moment for Jeff yesterday when he was negotiating with Raiyan about something with another autism parent watching. It was during the social skills group session and Raiyan was instead too busy playing with his dinasours. This was clearly contrary to the purpose of the session so Jeff instructed Raiyan to put the dinasours away – an added challenge was the fact that he was already halfway playing with them (children with autism finds it really hard to suddenly stop something they are in the midst of doing and to shift to another activitiy. That’s why countdowns and advance warnings are very helpful for them). The other parent observed the whole time Jeff was telling Raiyan to pack up his dinasours which Raiyan eventually reluctantly complied with but not without his typical “pathetic” (as Jo and I call it! Hehe!) whines and sobs. And she straight after told Jeff of how impressed she was with Raiyan not really put ting up a protest and how there wasn’t a single shout or scream heard. Even in school, Jo often tells me how a number of teachers found it so hard to believe that Raiyan is the same boy from last year that they remember to be the one rolling around on the library floor screaming just because he couldn’t get to read his animals book.

I am so grateful for all this positive feedback not only because it reminds me of how much he has achieved as I admit, it’s quite easy to take for granted and and to actually think that he has always been like this! It’s also a wonderful thing because we are proving to others that it is possible for tantrums to be substantially reduced or even stopped. I can’t be sure if it was down to the consistent technique that we practiced or if it’s just due to Raiyan being generally obedient in nature. Nonetheless, I am so grateful and proud when I watch old home videos and clearly see what a “far cry” those chaotic tantrum moments were where we had no choice but to just give in to his needs, however irrational and inconvenient they were.

The Final Countdown

With Raiyan progressing so well with his therapy, especially in terms of his speech, sometimes I make the mistake of expecting simple daily tasks like eating, showering, changing clothes would be easy too. I mean if he is starting to already learn logical thinking, complex emotions and hand gestures, then surely I can expect him to easily take a bath and eat his meal when he's supposed to.

But sadly, this is still not as straightforward as I expect it to be. Every single mealtime or bathtime is still a power struggle, every single day. And this is when I have to remind myself that he is still very sensitive to change and will probably always be. And I have to accept that like with the tactics used to improve his speech, I have to make the constant effort of getting creative in the behavioural techniques of trying to coax him to eat his lunch and take his bath. No, merely asking him if he's hungry or telling him that he's dirty makes no difference at all.

The most valuable tip I can share to grapple with these acts of defiance is to give the child a countdown (of course providing he understands) until he needs to stop doing what he’s doing and shift to another activity.

Learning Ladders are still in the process of getting egg timers (those shaped like an egg with big numbers on them, which unfortunately you aren’t able to get in Brunei) to make it visibly easier for our children to see how much time they have left, seeing how almost ALL of us parents use the countdown tactic to change activities.

So in the meantime, without the egg timer, Raiyan has to completely trust me in counting down the minutes and he will make sure I count down in the right sequence. Hence, if the last minute I uttered was “9 minutes Raiyan”, the next one MUST be “eight minutes” even though 3 minutes have passed because I was too lalai to check the clock! Raiyan’s gotten so good with his sense of time that sometimes I would try and cheat and let only 30 seconds pass by and then say “7 minutes Raiyan” to which he’d say “no, 8 minutes!”

But Alhamdulillah, the countdown tactic has worked WONDERS with Raiyan. Before, if we were to simply just yank him from what he’s doing to bathe him, he’d be screaming in protest the WHOLE time he’s in the bath. But now, we give him the countdown and after every update of “4 more minutes or 3 more minutes Raiyan”, he will ALWAYS obediently say “Okay.” At the same time, he also realizes he doesn’t have much more time to do what he’s doing at that moment, so he really cherishes those last minutes and concentrate with all his heart with what he is doing.

Countdowns are also good with 2 way bargainings, like when Jeff and I want to watch TV too, we’d say “Raiyan, Playhouse Disney 5 minutes, then American Idol 15 minutes ok?”. Raiyan would cheekily say “No, Playhouse Disney 15 minutes, American Idol 5 minutes!”

Best of luck to all parents who wish to try!

Wat U lookin' At?

Our family plowed ourselves through the weekend traffic jam in Gadong in an attempt to enjoy some quality time together at the Mall (Yes, I can see how paradoxical that statement may sound, especially having an autistic child in tow.. Why the Mall of all places??)

Well, for starters, we haven't been there in a loooooooonnnngg time. For the obvious reason that there always seems to be some kind of computer expo or travel expo or Brunei products expo on, which foreseeably draws a ridiculously large amount of shopaholic Bruneians to fill up every inch of space available! Evidently, it's just too intimidating to have our autistic angel be immersed in that level of chaos. It hasn't stopped us in previous times however so it's not like Raiyan has never been to the Mall or any other chaotic place for that matter. It's just that with all our energy thrown into the therapy, along with taking care of a curious 21 month old and a completely dependent 5 month old, we have chosen to give such outings a back seat for now.

But yesterday, and especially after having returned from another overseas trip where such talked of crowds are considered normal, Jeff and I just had a mutual craving to be part of that crowd again. We angan-angan to take the kids to the bookstore, have some desserts and milkshakes at Swensens, browse for baby clothes at Guess and Just Kidding, pick up some bathroom essentials from the Body Shop and perhaps get a DVD or 2 from AV Heaven. At the same time, we surprisingly but perhaps foolishly even had the bravado to handle all 3 kids alone by letting the maids go off and have their leisurely afternoon at the Mall too.

Oh but it all remained an elusive dream my friends.... After only having set foot into Best Eastern, Raiyan went straight to the children's section in active search of an animal book. We let them spend about half an hour in the shop just to enjoy what they can read there (I just bought them a bunch of books from Singapore anyway, so I wasn't going to indulge them more!) and then put the books back and move on. Of course, Raiyan resisted. He had in his hand a book on how to make origami farm animals that cost $7.80.. Even if I wanted to buy him a book, this would be one of the last books I'd get! Not only are we trying to stray him away from his obsession with animals, the book didn't even have any story to tell which would have helped him with his imagination and emotions! So it was a definite NO to Raiyan!

So yes, the tears and the whining ensued..Though I have to say that it wasn't half as bad as how it used to be. There were no shouts and screams and no rolling on the floor alhamdulillah. But yet, he was still loud enough and emotionally distressed to bring attention to himself. And again, that's when I nearly lost it! I tried REALLY hard to not take it out on Raiyan because I had to constantly remind myself that his reaction now is BY FAR SO MUCH better than how his old tantrums used to be.

But it took every energy in me to not blow up at the groups of people who STILL had to stop, look and even turn around to stare at poor Raiyan.And we're not talking about just "innocent" stares emanating from pure curious concerns. These are the stop, look, still look, shake head and whisper to spouse/friend with a judgmental expression kinda stare!

I don't get it! It's a just a small child crying.. Have they never seen a child cry before? Do the children in their lives NOT cry? Are they expecting to see a psycho mother physically abuse her child in front of everyone to see? It so reminds me of the mentality where people slow down on the road just to kaypoh catch a glimpse at an accident that doesn't concern them at all. Unless it looks like a tragic one that sadly, I personally can't help looking too OR if it involves someone you know, I don't see any reason why everyone should not just look away after a second and DRIVE ON.

Which was precisely how I felt with all those equally kaypoh people staring at Raiyan. IF he was screaming out in pain or rolling around on the floor or doing whatever extraordinary things other children don't normally do, I can forgive them to feel the need to stop and stare. But he WASN"T. He was just crying out for an animal book, over and over again. No big deal. If I knew it was a big deal, I would have started charging people to watch.

Which is why I would probably need to get this t-shirt before our family ever make our way back to the Mall again:

Anyone interested, you can get this t-shirt at autismbites and you would be helping out the foundation at the same time!

A Trip Into Raiyan's Mind

Auntie Wen Wen came back from Bangkok this morning and in her traditional pweshes darling auntie ways, bought each of the babies some goodies from her shopping expedition. Even though she (and along with everyone who knows Raiyan) is fully aware that Raiyan is verrryyy fond of animals and that up until about 2 weeks into his therapy, was actually an obsession for him, he has somehow proven to us in the last few weeks that even though he still dearly adore that part of nature, it however never reached a point where we would get worried over it reverting back to being an obsession.

So it is understandable that Auntie Wen Wen (who left for Bangkok on Friday night) found this t-shirt from Jim Thompson absolutely adorable and a tad frighteningly perfect for Raiyan:

I Wove My New T-Shirt

Jeff described it perfectly when he saw it: “WOW! It’s like Raiyan’s mind vomited and landed on this t-shirt!”

Not surprisingly, Raiyan took an immediate liking to the t-shirt and wore it straight away after Auntie Wen Wen gave it to him early this morning. So excited was he to wear it that he didn’t even bother to take off the t-shirt he was already wearing and ended up wearing 2 layers but yet not perturbed by how hot it must have been.

What I failed to mention to Auntie Wen Wen whilst she was away was that on Raiyan’s first therapy session with J on Tuesday after more than a week, Raiyan had a medium intensity tantrum because J brought a box of farm animal figurines but didn’t let him play with it when it was time to move on to something else. He cried and cried for 15 minutes until he actually fell asleep (hmm... scarily feels like the old pattern coming back huh...). I was actually very surprised that that happened because in my judgment as a parent for the last ten days, I had noticed him talking more about animals but I still didn’t think it was obsessive because he was always able to tear himself away from it when I told him to. But later that night, Jeff and I couldn’t help getting a bit worried because he kept throwing mini tantrums here and there just because he wanted to do things we didn’t allow him to. Instead of letting ourselves get too down about what was happening before us, especially since we haven’t witnessed such tantrums in quite a while, we just deduced his behaviour as an extended frustration from his tantrum with J for being denied the farm animals and didn’t dwell on it further.

But it didn’t stop me this morning from thinking this t-shirt might cause similar problems too. So I called my sister from the office, voiced my fears and asked if she can try taking it off at any possible opportunity. At lunchtime I was a bit startled to see that he was STILL wearing it but was slightly relieved when sis said that she had actually forgotten to try and yank it off him. I wasn’t really up to putting up a struggle during my short lunch break so I just let it go.

BUT, come bath time in the evening; I felt like I was re-visiting a nightmare that I have not experienced in a long time. Raiyan screamed and screamed “Jungle t-shirt! Jungle t-shirt!” countlessly whilst throwing his naked self around on the floor and the couch for almost an hour. He refused to wear his pyjamas and upheld his usual protest that always gets under my skin- refusing his dinner. Following what just happened 2 days ago, I panicked and nearly went crazy myself. Old memories of previous struggles came flooding back glued with overwhelming feelings of fear that this might be the consequence of Raiyan not having therapy and school for a substantial amount of time.

Thankfully, Jeff came back home in a completely rational state and tried bargaining with him.

His tactic to Raiyan?
Babah: “Raiyan, first eat dinner, second wear jungle t-shirt for 5 minutes ok?”

But Raiyan’s reply was simply “No. No eat. I want jungle t-shirt now.”

After coaxing for quite a while along this line, Jeff had to get more creative and went one step further:
Babah: “Ok, if you wear jungle t-shirt, then you eat ok?”

Thankfully, Raiyan reluctantly muttered “okay”

And syukur Alhamdulillah, upon having the t-shirt on his body, he obediently sat at the dinner table and finished his whole dinner... sigghh.... and after he finished his dinner, I told him he can wear his t-shirt for 5 more minutes to which he agreed! And sure enough, he took the t-shirt off himself with no drama at all after that..

Jeff and I still can’t help thinking we can’t comfortably leave Raiyan with anybody else just yet because it is sad fact that for now, only Jeff and me can get through to him. What was scary tonight was that even pweshes mama felt lost and surrendered to babah’s rescue in the end. If I can still feel like that, imagine how others can feel upon seeing Raiyan have his tantrums?

At the same time, we still didn’t allow ourselves to over analyse the situation so much and to jump into conclusions about Raiyan regressing due to not having therapy for more than a week. Furthermore, we tried to be empathic thinking how perfect that t-shirt must be for him. As Jeff said, that must be what his mind looks like!

Also, we focused on the positive in that we were still in control over the animal t-shirt in that we can use it to our advantage to get what we want. Concurrently, Raiyan is also showing his intelligence by using it for HIS advantage to get what HE wants.

Aaahh, I can just see ten years from now..
Mama: “Raiyan, we go for African Safari if you get 10 As ok?” heehee

The Love Affair with the Computer

Raiyan started independently playing with the computer just 3 months short of his 3rd birthday. I initiated it by playing a number of interactive games on http://www.sesameworkshop.org/ and http://atv.disney.go.com/playhouse which he loved doing together with me. Obviously it got to a point where he was loving it too much that I started to get a bit sick and tired of playing the same games probably 10-15 times in a row! More because I wanted to give myself a break from it without having to deprive him of the entertainment he was clearly getting, I tried my luck and introduced him to the mouse so he can play the games himself. I swear to god, he mastered using the mouse within 3 minutes and he’s been off doing his own thing with the internet ever since.

After having ventured through all the interactive games, short movies and song recordings from the abovementioned sites, he managed to find newer sites to play with. At first I was obviously bewildered as to how he could have done this but I slowly discovered that he would just click on various links until he stops at something he likes. The amazing thing is that sometimes it would take him more than 5 links but every single time if he wants to re-visit that site he likes, he would remember the sequence of links to click to get to where he wants to go.

Raiyan 3 years old

He would get very proficient with computer games too. To be honest, I didn’t really spend much time doing this with him as this has been more of a favourite pastime of him with his grandma and she would always tell me how amazing he was in his ability to spot things that she couldn’t and how fast he was with his hands in terms of timing and precision. Without a doubt, he could have given some grown ups a run for their money in some of the games he was frankly, very brilliant at.

When he started getting obsessed with his animals, what he would spend hours doing was open up all his animal books and wikepedia all the animals he could find. Not surprisingly, this was probably where he learnt that a whale is a mammal and not a fish, that a polar bear doesn’t live in Antarctica but only in the Arctic, how he knew of some obscure animals like the gharial and also the many different types of crocodiles out there and how he decided that his dream destination is going on a safari in Africa (this choice even beats going to Disney World!).

After having met other parents through Learning Ladders, I discovered that Raiyan is not the only autistic child to love the computer so much. One boy managed to spot his teacher’s password (just by watching her type it) and accessed her email without her knowing at all! Another boy managed to create his own user account on the computer just by being in the same room whilst his mum was creating her account!

I used to see the computer as a serious double edged sword. I loved how Raiyan can keep himself entertained by it, how much he was learning things on it and how he can hone his skills in educational games that even some adults find trouble playing. But at the same time, he would spend such prolonged times on it that caused him to completely disconnect with the rest of the world, took him away from being interested in anything else, made his obsessions with animals worse and also was the main cause of his self talk and echolalia (he would repeat what was being said on the children websites like “to turn right, click on the red button etc etc”). And it goes without saying but the tantrums would be just terrifying everytime we wanted him to switch the computer off.

Alhamdulillah, once he started this therapy and his obsessive tendencies started to lessen in intensity, he started to be able to play with the internet a few minutes at a time and then move on to something else. (Take note that in the early stages to avoid him playing with it altogether, I had to change the home page to a site that didn’t have any search engines on it. Shortly after seeing how it wasn’t possible for him to get to a site that he liked, he just naturally gave up).

But this week, because it is his school holidays, I noticed him slowly returning to his old computer nerdy self... I guess with no school and no therapy during the day, “playing” didn’t come so naturally to him if compared to times when he would just follow up at home what he had done that morning. And when he’s at his grandparents’ house the whole day, there are less things for him to play with too since most of his toys are at home anyway. So it’s no surprises that he resorted to spending his time on the computer for most of the day over there. That didn’t worry me so much as I can understand that it might be difficult for him to entertain himself for the reasons I had told you. But what I was taken aback with was the fact that once he got home, he still insisted to play with the computer and refused to have his dinner and had a tantrum when I switched the computer off.

This has helped remind me of the fact that Raiyan is still a work in progress and that just because he seemed to have been able to freely come and go from the computer doesn't mean he won't go back to his previously obsessive ways if the circumstances around him causes him to do so.

At the same time, having re-visited the computer since he started therapy have also reminded me of all the things he's good at when he's on the computer that I just thought that perhaps I should still encourage him to continue with some of them..

At the end of the day, it's really about finding the balance of letting him enjoy the computer without it necessarily becoming an obsession. Because even though it can get quite worrying when he's stuck with it all day, sometimes I just have to give him the benefit of the doubt that he's not necessarily obsessed with it but maybe it's something that he just really enjoys, not unlike when typical children have their hobbies too. Furthermore, seeing the amazing things he can do on the computer should only just encourage me to let him carry on with what he loves doing!

Raiyan teaching Alisha some computer skills

One Wedding and A Break-Up

Raiyan, Zaty, Alisha & Zana

Jeff's nephew got married at UBD last Sunday and we managed to conjure enough courage to bring Raiyan along. The last time I went to a wedding, I just brought Alisha and everyone asked where Raiyan was and so I couldn't help feeling guilty (even though I know I shouldn't) about leaving him, the bigger sibling, at home. And since we're on a roll with introducing him to new things, we thought we'd just give it a go.

The last and only time we brought Raiyan to a big family function was in December 2006 (you can read about it here) and he was a complete nightmare. Of course at that time, we weren't aware of his condition so I ended up getting very angry with him and we just left the function abruptly. But this time round, I thought we're definitely more prepared. On our part at least, we can withstand the stares and curious looks because we already understand Raiyan to be how he is and if anybody would want to insist on asking why he's like he is, we'll simply say "he's autistic." On Raiyan's part, I made sure we don't bring anything that he is obsessed with that would give him any reason to throw his now infamous tantrums.

For the most part, it went quite well actually! He stayed with me, Alisha and his cousins Zaty and Zana most of the time. Yes, he did run up and down the hall with the sporadic shoutings but nothing so obviously different from the next child running alongside him. Towards the time of the Doa being read he started getting restless though which is understandable as by that time he's been there for almost an hour. Out of respect, Jef took him out of the hall. Raiyan then mistook this as going home time so he started shouting out for his cousin and that's when his new obsession finally dawned on us- his cousin Zaty.

All this time, he has always been more clingy to Zaty than the rest of his cousins but we just always thought that it's because she knows how to layan him. But Jeff and me would notice that Zana devotes an equal amount of attention too and yet he seems to be more fixated on Zaty. For the past year, everytime we visit the neneks' house or Zaty's house, there'll always be a mini drama when it's time to leave as naturally he doesn't want to let Zaty go. There was once even a ritual of driving him around the block with Zaty before he'd be ready to say good bye. (Don't worry, we've stopped doing that now).

But in recent weeks, his cries for her seems to have gotten worse and yet we didn't see the flashing growing obsession lights. I had an inkling the week before when Zaty actually followed Jeff and Raiyan home. So I thought the next time he sees Zaty, let's try and not give in to him and just bluntly take her away without explaining anything or trying to pujuk him.

I was right. At the car park at UBD, Jeff and me just quickly said bye to Zaty and told her to just go straight to her car and don't look back (and assured the little sweetheart that she doesn't have to feel guilty as what she's doing is HELPING him in the long run). Then Jeff, F.I.L. and me had to walk all the way to our car at the end of the car park with Raiyan screaming away "NOOO! ZATYY PWIISS (a.k.a. please..)!!!PWWIISS ZAAATTYY!!" and there was Jeff and me plainly ignoring him for the world to see. I tried a few times to avert his attention by asking him if this or that is our car but he wouldn't have any of it. He was very, very distressed. Needless to say, he cried for more than an hour after that.

It's so much harder when the obsession is a person compared to when it was just things, because it's natural to just think that he loves his cousin and just wants to spend time with her and so why should we deny him that, right? And at least he's showing loving affection to another person which is always good right? But as we know, with autistic children, obsessions and rituals can become really serious and permanent. Zaty is just blossoming into a teenager and that is an enough struggle on her part without having to worry about a young boy following her around until god knows when (inda jua cool tu!). So we're probably going to have to do this a couple of times until he can actually say bye to Zaty without crying. We also have to make this intention clear to the family to avoid them thinking that we're just trying to separate him from Zaty. We just have to make Raiyan understand that it's ok to say bye to Zaty because InsyaAllah he'll get to see her again and in the mean time he'll have his family to play with at home. I cannot stress enough on how important team effort is in this type of situation. Otherwise, we all might just have to pay extra for Zaty's honeymoon cause Raiyan wants to come along!!

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!

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!

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.