Or in Raiyan's words- Tee-La!
After much deliberations and undergoing many trial and errors, I think I have finally decided on this new layout. Raiyan's fave colour is green so the nuances of green within it is perfect. I couldn't let go of this artwork by celso junior cause it just has such a special sentimental hold on me. And lastly, I love how there are so many sections for me to put in al the side things!
It's still far from complete though. I would go on but it is already 1:30 in the morning and I have to get up in 5 hours time to go to the gym! Hah
Whoooppsss!
Sorry, I've kind of messed up the blog whilst trying to change the layout and am going through some technical problem now in trying to fix it. Hopefully it will all be resolved by the weekend and Raiyan's blog will look brand new insyaAllah!
Feeding the Kangaroos!
What was so cute was when he kept saying "Haha the kangaroo tickles the hand! haha!"
Well done Raiyan!!
Random updates...
A lot has happened since I last posted. The biggest thing was our family minus Addin going on a 6 day holiday to Singapore. Somehow the planning stages already felt different and better for Jeff and I. For the first time we weren't so worried about bringing an abundance of things with us in case at any point Raiyan may insist on having something, anything- remember items of the week? The thought of introducing Raiyan to new things was also not as intimidating. The idea of changing plans at the last minute was also not as daunting as before. Instead, we really just wanted to focus on having a good time.
And indeed, syukur alhamdulillah, Raiyan had a blast and not a single tantrum surfaced throughout the 6 days! In our very tight schedule we managed to go to Singapore Zoo, Night Safari, Botanical Gardens and the Museum (not that that was his interest!). Even when we were at shops, we always managed to give him (and Alisha) a break by letting them run wild at the toy store or the indoor playgrounds many of the shopping malls thankfully have in place. The best part was he was always communicating his feelings and wants properly and appropriately instead of just screaming for what he wants like what he used to do. If he was feeling tired from all the walking, he would tell his babah "Babah, I am tired". And he would always ask us "where are we going?" when we haven't told him yet. And of course he did not stop yapping away at the zoo!!! But funnily, when we ask him if he wants to go to the zoo again, he said "Nooo! We went already... that's too much zoo!"
Raiyan is also much much more social now and he will always approach other children and try to start playing with them. At one of the playgrounds, he was definitely playing together with another girl for almost half an hour! And only after that long did Jeff spill the beans about his condition to the girl's father and he said he really had no idea!
Another big thing happening since my last post was Raiyan's 5 year old check up at the clinic. Luckily he was able to understand our early warnings about the injection so we didn't endure a complete nightmare when he was getting the jab. The great part was that the nurse whilst checking his development thought that he is completely ok but probably just a little shy!
Now the meeting with the doctor was a different story... see, there was this bunch of letter blocks on the doctor's table so unsurprisingly, he was verrrryyyy distracted and engrossed in looking through all the letters on the blocks that he failed to really listen to what the doctor was saying to him. Nonetheless, the doctor said overall, he does seem fine but he DID think Raiyan may be mildly autistic because of the part where Raiyan was ignoring him. (I guess our medical authorities really only start paying attention to a child's development at 5 huh?) Soon before we resorted to being slightly disappointed with the fact that Raiyan didn't talk much with the doctor (stupid blocks!) out of nowhere he just said "Babah! The "C" is missing because I can't spell cat!"
Meaning (which we hope the doctor noticed) he was distracted with the blocks because he wanted to make sure that ALL the alphabet were there!! Some things never change huh!!!
School's starting in 9 days time and Raiyan is going to be in year 1! Will keep everyone updated about that then but in the meantime, we are enjoying the rest of Raiyan's holiday! So sorry I'm not able to blog much this month!
And indeed, syukur alhamdulillah, Raiyan had a blast and not a single tantrum surfaced throughout the 6 days! In our very tight schedule we managed to go to Singapore Zoo, Night Safari, Botanical Gardens and the Museum (not that that was his interest!). Even when we were at shops, we always managed to give him (and Alisha) a break by letting them run wild at the toy store or the indoor playgrounds many of the shopping malls thankfully have in place. The best part was he was always communicating his feelings and wants properly and appropriately instead of just screaming for what he wants like what he used to do. If he was feeling tired from all the walking, he would tell his babah "Babah, I am tired". And he would always ask us "where are we going?" when we haven't told him yet. And of course he did not stop yapping away at the zoo!!! But funnily, when we ask him if he wants to go to the zoo again, he said "Nooo! We went already... that's too much zoo!"
Raiyan is also much much more social now and he will always approach other children and try to start playing with them. At one of the playgrounds, he was definitely playing together with another girl for almost half an hour! And only after that long did Jeff spill the beans about his condition to the girl's father and he said he really had no idea!
Another big thing happening since my last post was Raiyan's 5 year old check up at the clinic. Luckily he was able to understand our early warnings about the injection so we didn't endure a complete nightmare when he was getting the jab. The great part was that the nurse whilst checking his development thought that he is completely ok but probably just a little shy!
Now the meeting with the doctor was a different story... see, there was this bunch of letter blocks on the doctor's table so unsurprisingly, he was verrrryyyy distracted and engrossed in looking through all the letters on the blocks that he failed to really listen to what the doctor was saying to him. Nonetheless, the doctor said overall, he does seem fine but he DID think Raiyan may be mildly autistic because of the part where Raiyan was ignoring him. (I guess our medical authorities really only start paying attention to a child's development at 5 huh?) Soon before we resorted to being slightly disappointed with the fact that Raiyan didn't talk much with the doctor (stupid blocks!) out of nowhere he just said "Babah! The "C" is missing because I can't spell cat!"
Meaning (which we hope the doctor noticed) he was distracted with the blocks because he wanted to make sure that ALL the alphabet were there!! Some things never change huh!!!
School's starting in 9 days time and Raiyan is going to be in year 1! Will keep everyone updated about that then but in the meantime, we are enjoying the rest of Raiyan's holiday! So sorry I'm not able to blog much this month!
Making Peace with Autism
I have decided to change the title of this blog from "A Personal Journey with Autism in Brunei" to "A Peaceful Journey with Autism".
This really derived from an epiphany I have been having lately through dealing with Raiyan's autism. I have been slowly moving away from being that parent who is incessantly endeavouring to improve and better my child, along with always trying to ante the therapy as much and as often as I could, without having taken a moment's break to see who my child is and to see the world from his point of view.
My objective when I started the blog was to mainly chart Raiyan's progress with his new therapy programme and to share it with others, especially in Brunei where autism is still very much hidden and misunderstood. And since I was opening ourselves up for the world, of course it felt personal and it was apt to call the blog "a personal journey with autism in Brunei."
But I have been so absorbed with seeing progress, expecting certain responses and behaviours, (with the somewhat careless notion and confidence that he, as a mere 5 year old will be able to handle it), that at the same time I have neglected to actually get to know the real Raiyan. And that means understanding the reasons behind those times when he blankly refuses to talk to me who is constantly insisting he responds to everything I say. That's when I realised that it makes sense for me to want to ignore someone asking me uninterrupted questions on something I have no interest in right? This is what my gut feeling is telling me now as to why Raiyan may be behaving this way lately. He might be more aware of his personality that now he has more confidence to decide when he should respond and when he shouldn't.
The other day Jo told me that even though his therapy sessions are going brilliantly, she suspects he may not respond as well outside of the sessions because the therapy already takes up so much of his energy and concentration. So much so that he still needs to resort to his own world once in a while. A few months ago, this would have been unheard of for me because we thought to allow him to retreat back will mean regression, and the stoppage of making further headway.
But lately he has been resilient in going back to his old ways, albeit still controllable and in much smaller quantities. Compared to how he was in the last months, he's been throwing himself on the sofa more, he's been shouting more, he's been demanding body contact when sleeping more, he's been ignoring others more, he's been self-talking more AND he's beginning to rekindle his previous obsession with animals (to be fair on him, this may be because he knows we're taking him to Singapore Zoo next week).
But the surprising thing is, despite what may seem to us paranoid parents as regression, he is still successfully completing his ABA programmes at the right pace and when following the programme strictly, he CAN continously talk throughout the 2 hour session.
Which have now led me to think that I should start to relax a bit more and be less controlling over the outcomes of his therapy and let nature takes it course. I've realised that it has been a farce for me to think that his therapy has "changed" him to be a different boy and that the future will "definitely" be much brighter from now. I do not deny that the therapy has worked immensely well but I have been so naive to think that we've crossed the biggest hurdle. We may have when it comes to his communication skills with those close to him, but there is long road ahead in so many other aspects of his life.
But rather than confront these challenges in an aggressive way as I may have done so lately, I am now choosing to handle things in a more "peaceful" and more importantly, in a less stressful way that is free from disturbing thoughts or emotions. Instead of getting either perturbed or in denial about the "lows" (like for eg yesterday a boy from his old class who happens to also be a neighbour avoided him and told Jeff that he doesn't like Raiyan- luckily Raiyan didn't realise but Jeff and I couldn't help getting saddened by it), I shall just embrace it and accept that all of this is part of the bigger picture and overall, they are a part of LIFE that no one but Allah has any control over. There is absolutely no point in getting angry or being militant in getting results when in the end, you know that things don't always go as you plan. We just have to keep the faith that no matter what happens, insyaAllah it will always work out in the end.
PS. The title of this post comes from the book by Susan Senator that I am reading (and of course influenced by) at the moment. And funnily enough, the new title of the blog I actually got from Mom to Max who somehow linked me as this new title even though at the time it was wrong! So it's thanks to her really!
Enough with the fighting!
I have read through many many blogs on autism since I've started Raiyan's. Initially, being trailed by insecurity, naivety and credulity, I was easily influenced by the varied opinions expressed by these bloggers, who mainly comprised of parents of autistic children and autistic adults.
I think it's quite natural for parents upon receiving the diagnosis (especialy in Brunei when denial against autism is still quite prevalent) to want to "cure" the child or rid him or her from whatever that is causing him to be different. Different not only from our own expectations of how he or she should be but also (however shameful it is to admit) from other people's perceptions of how your child should be.
So, we naturally sought whatever available therapies for Raiyan and grabbed whatever we could find. Of course Jeff and I have never stopped being thankful for having Kerri and Jo enter our lives. They not only have taught Raiyan the ABA way but they have completely and utterly done so with the constant belief that each and every aspect of the programme caters specifically to Raiyan's personality and being, and which always considers both his potentials and limitations. I know ABA in its most general terminology can sometimes be viewed as bad by some neurodiversity supporters because it is said that its objectives are to "normalise" the child and make them "indistinguishable" (even though those are often false dreams aspired by newly diagnosed autism parents..) and even worse are those accounts of the earliest Lovaas methods that use excessive force to the point of abuse on the child to be part of the therapy. Learning Ladders Blogspot has very effectively described the "kind" of ABA that we use and to add on that, all of us parents (and Kerri and Jo for that matter) do not employ or let alone, do not agree with the philosophy and techniques the type of ABA therapy that those negative views are placed on.
Anyway, back to the point of this post. After reading the many opposing opinions on autism, mainly surrounding the need to cure and how that is considered offensive to the neurodiversity group and also the more widespread one these days which is whether or not vaccines causes autism, my thoughts have probably leaped from one understanding to another as frequently as Raiyan's hyperactive need to constantly run from one end of the room to another.
Though at first I was appalled at the comments made by the ND group ridiculing us parents who wanted to "cure" our child, now I'm thinking perhaps I was too quick to place myself on the side of those who indeed yearns for their child to cured or recovered. This is because I have learnt that those on this side of the debate seek to one day have their child to not have autism anymore. After just a month or so after the diagnosis, I soon began to realise that this is not what I hope for at all. My main worry about the autism is how it is affecting Raiyan's communication. The other aspects of his autism, like his repetitive behaviours and reluctance to try new things, though we are trying to improve as much as we can for now, are actually tolerable and to us, and are a completely acceptable part of him (It's society that takes issue with them more). I think it's just a matter for us parents to control its timings and frequencies as opposed to eradicating them altogether (just like how typical children are disciplined and prevented from behaving a certain undesired way too). After understanding Raiyan more, I clearly see that him doing the things he does makes him so blissfully happy. And if the worst thing that happens from him hugging some random child is for others to regard him as strange then I don't mind so much that he does it. Rather, I would more think those persons are the ones with the problem!
One thing that puzzles me is this one overlap that seems to run its themes across all these autism mommy blogs and these are pictures and pictures of how happy the child is, regardless of which autism camp the mommies belong to. For those in the camp that wants to cure their child, pictures of their child going down the slide are usually elaborated with stories of how before the therapy, he wasn't able to even go near the playground and now LOOK! Another step towards recovery. What you would read under a similar picture in a neurodiversity mom blog would then be something along the lines of this is my autistic child and how happy he is going down the slide. Basically, they are more portrayed as being able to do that kind of thing anyway.
I didn't plan for this post to be a long one so I'm just going to abruptly cut it short here though there are many other thoughts going through my head now. It's just that I am really really getting tired of reading about all this in-fighting when to me it seems clear that all the parents want is to see their child happy. Maybe one side may think the other side is doing it the wrong way and in the end, may risk doing more damage to the child-but that is for them to find out themselves rather than being told or dictated on what to do.
Like me, I managed to slowly turn around... With a more open mind than before, I am beginning to really grasp now what the ND group is trying to say, despite all the hostilities and harsh words sometimes used. In turn, I have also discovered some unpleasant comments made by the side that wants to cure that I'm as equally appalled with them as how I was previously appalled with the neurodiversity group.
I don't actually promise that I'll stick with this opinion forever. My journey with Raiyan, insyaAllah, is only just beginning and I have a whole lifetime to look forward to discovering Raiyan, understanding Raiyan and also to learn more about autism. The thing is at the moment, I kinda need both sides to learn from as I really honestly feel there are pros to each side's story. I only wish I can continue learning without having to play witness to people being so nasty and hateful to each other.
Raiyan will always be my "baby"?
Raiyan has been looking a lot older these days... Maybe it's due to his hair being cut shorter than usual, or because there's less baby fat overall and so he's looking much slimmer these days ..and he's so TALL. Or I'd like to think it's also because he's communicating with us more now. Whatever the cause may be, he just seems older.
I know it's probably a bit premature for me to feel like this but in the past few days I have been feeling more nervous and apprehensive at the thought of my pweshes baby growing up. I'm sure this is something all parents go through with their children as parenting has to be the most difficult full time job in the world. Especially in this day and age of globalisation, where outside influences like TV, internet, mobile phones etc etc introduces a wide range of things to children at a click of a button when compared to when we parents were children, there just seems to be so much more difficulty in trying to raise a well balanced, healthy, respectful, honest, diligent and altogether "good" child now that we have so many things around them to be minded of, take control over and to protect them from.
I am of course especially more worried about raising an autistic child notwithstanding the fact that I have learnt countless numbers of things since Raiyan's diagnosis. My personal journey with Raiyan has seen me experiencing all sorts of conflicting feelings such as denial and relief, embarassment and pride, weakness and empowerment, isolation and unity, helplessness and enthusiasm and sometimes these are still ongoing and which of the two I feel really depends on a lot of things. I do happily report that the latter of the two feelings described is more prevalent these days than the former alhamdulillah.
Except perhaps for anxiety and confidence. Where I thought my confidence was more forceful, lately my eyes and mind are warily opening up more in the anticipation of Raiyan growing up. One noticeable fact with him getting older is that with him looking less like a "baby", his erratic behaviours that used to be written off as adorable now just makes him look more obviously different.
He is getting a lot stronger so pulling him up the stairs to take a bath or calming his tantrums are naturally more grueling and wearying..Having his 23kg body jump on your back to be funny is not so funny on hubby's aging spine (though piggy backs are still tolerable). Some, though not all, people may be perturbed with his desires to say hello or even to go up and hug every child he sees even though it's not reciprocal. These are just some of the minor concerns that I have that insyaAllah are quite tolerable.
But what I'm more worried about is the thought of him rebelling against us (yes, I did say I might be overreacting a bit..)! It just seems that with the therapy, we keep telling him to stop doing a lot of things he wants to do. Of course, I completely understand the need to do so because with him, it's really important for him to try different things so I can't just let him eat the same foods or wear the same clothes over and over again. And I completely understand the need to reduce his inappropriate behaviours like making the "P" phonetic sound repetitively (that makes him look like spit's coming out of his mouth) or playing with my elbow when he wants to be comforted as to leave him to it may mean he'll get stuck doing those things for a long time to come. And I know how important it is to control his intake of internet and TV for fear that he may start getting obsessive with them again.
But there has to be a point when Raiyan has a limit to how many "don't"s and "stop it"s we tell him right? And I can't help feeling so awful after finding myself saying those words at least 20 times a day. I mean who likes to be a nag? Jeff and I certainly don't.
I've also been reading more writings by autistic persons such as Temple Grandin, Donna Williams and recently this blog which have really taught me in a BIG way in trying to understand how Raiyan may think (granted I don't take everything wholeheartedly and literally since not all autistic persons are the same-but generally everything I read seems logical and makes lots of sense). I love reading what they go through and have went through, especially in reasoning out their behaviours and their needs to do so. Above all, it just reminds me that Raiyan is his own person with his own personality and even though sometimes I want him to act a certain way or talk a certain talk, I cannot deny and prevent him from just being himself.
That is the struggle that I find I'm going through a lot more these days. As having completely accepted Raiyan to be autistic, I have managed to do away with all those dreams of making him "normal" and "indistinguishable" despite having seen some news of such occurrences with other [ex?] autistic children. But I do not deny that I still have much bigger dreams for him than where he is now. I would love for him to be able to converse freely with everyone else. I would love for him to build deep and meaningful relationships with others. I would love to see him graduate from university and get a job. I pray for the day I can be confident with the idea of leaving him in this world when it's time for Jeff and me to go.
But at what costs do we have to take in trying to achieve the above dreams? Is it bad for me to hope for such things if along the way, there will constantly be at least a thousand don'ts and stop-its thrown at him?
Raiyan's Climbing Skills
Raiyan's gross motor skills has improved a lot that he can now easily and verrryy quickly go up this playhill at the playground! And he's sooooo confident at it too!
He's also really good and fast on this balancing beams.. He keeps saying "I am balancing!" at the same time too!
He's also really good and fast on this balancing beams.. He keeps saying "I am balancing!" at the same time too!
The Benefit of Hindsight
Whenever I meet other parents of autistic children, I always find that the best way for us to connect with each other is by exchanging stories of how and when we began to be suspicious of our children's behaviours.
From this experience, I have found there to be a spectrum on these stories. On one end, there are those that have noticed something different from the day the child is born and on the other end are those who say their child developed normally until about a year old (usually when the MMR shot was given) and that is when they notice their child starting to withdraw and change into a different person.
Raiyan was our firstborn and furthermore, he was the only baby in our family at that time so Jeff and I never had anybody else to compare him to. When he was growing up, we weren't particularly alarmed with anything apart from his speech delay and anything he did, even when highlighted by others to be slightly unconventional, we would merely conclude that the behaviour was part of his unique personality (it didn’t help that I have always been the type of person that shuns conformity and always strive to stand out from others!). So for example, I would take pride when others comment on his incessant need to line up paper cups to be on the same level with each other (when served during a family function) or how amazing it is that he never scribbled on the walls, both of these behaviours you wouldn’t normally find in typical children. Jeff and I, more often than not chose to view his “difference” positively and never negatively. On the good side, this shows how openly accepting we were of our child’s personality and character and disregarded the need for him to conform to expectations of others. Unfortunately it also meant that we were turning a blind eye to symptoms we should have alerted ourselves with.
So needless to say, after Raiyan's diagnosis, Jeff and I have gone on overdrive in educating ourselves about autism by reading many books, articles and blogs particularly those shared by other autism parents. Symptoms and signs have always been an interesting subject because that is the first question others always ask. So much so that Learning Ladders published and distributed a booklet on signs and symptoms during our official launching event. I find this need to learn more important as I have always intended to have many children (I’m thinking at least five...) so this way I can learn to spot the signs as early on as possible. In fact, I am already on high alert with pweshes Addin (who happen to look exactly like a mini Raiyan), constantly observing his actions, and keeping in check with all the milestones expected of him. As I have mentioned before, Alisha at 2 years old, seems to be a typical child. She is talking and communicating easily with others and is constantly in an attention seeking mode (sometimes a tad too much-ngalih pulang melayan!)
With the benefit of hindsight, I am remembering more and more signs Raiyan displayed in his early years (and not due to him being born premature) which are clearly distinguishable from what I saw with Alisha and her early development. I am quite ashamed to admit that there are times when I am anxiously and nervously on the lookout with Addin for any of the symptoms that Raiyan had displayed in his early years so as to reassure me that Addin does not possess those symptoms and so there is a likely chance that he is not autistic. (Though we would be redha if that happens anyway).
Just to share, my earliest memories of Raiyan's symptoms which I didn’t see in Alisha and am not seeing in Addin so far (and also some I was amused to discover were shared by other autism parents too) are:
1) He had poor eye contact as early on as 4 months old. My sister Tiwin only met him for the first time at that age having been away when he was born. At their first meeting, Tiwin couldn’t help noticing that Raiyan only looked at him from the corner of his eye and when she looked back at him he would look away! There is some resemblance between my sister and I so I can’t help thinking that he was interested in looking at her face but at the same time was not able to handle it when she would look back at him;
2) His first tantrum was when he was 7 months old and it was on our trip to Sydney. After spending a whole morning out and about shopping, he suddenly started screaming at the top of his lungs for no apparent reason (we assumed he was just hot) and we weren't able to quieten his screams for more than an hour. We tried almost everything but he just refused to stop crying until after about 20 mins of being in the hotel room;
3) He never crawled nor raised his knees and body up but instead had a strange combat movement of shuffling his torso across the floor to move around. Therefore, he leaped from having this strange combat movement to straight away walking alongside things he can hold on to;
4) He was fascinated with the spinning fan on the ceiling as early on as 2 months and would just stare and stare at it;
5) He never knew how to hold his bottle properly that we had to buy bottles with handles and he used it all the way until he was 4 years old;
6) He was always such a deep sleeper. Though this may be contrary to some parents’ accounts of their children having sleep problems, Raiyan’s deep sleeping pattern was still peculiar in that, we would be watching TV on full blast volume with him sleeping in his cot in the same room or Jeff would be pushing him sleeping in his stroller in high speed across Manhattan along the bumpy blocks and streets and he wouldn’t budge at all and still be sound asleep;
7) He never babbled until he was probably about 18 months old. Instead he just screams "EEEHHH" or "AAAGGHH";
8) He was never fussy or “pemilih” with people. In hindsight, this was probably because he was indifferent as to who was with him anyway!
9) He was terrified of small enclosed places that he would uniformly cry at one of our aunties’ house during makan2 because there were too many people in a small room. After a point, I’m sure my auntie was jaded with our repeated excuse of “ia kan tidur/ia baru bangun tidur”;
10) There is this video of him laughing away (at 7 months old) after finding Tiwin sneezing absolutely hilarious. From there, we could have concluded that he was a social baby after all, being able to joke around with others. But again, with the benefit of hindsight, I am learning that his way of laughing or “socialising” was still different because he was only laughing at the act of being “shocked” by her sneezes and not even once when he was laughing was he looking at Tiwin. Hence, that precludes that incident from being a “social” connection. In addition, Raiyan can always, like at the switch of a button, be made to laugh hilariously by being “shocked” or kena kajutkan. He loves this game so much that even at 5 years old, it is a sure fire way to draw out his infamous elmer fudd cackles. Clearly, this means that jokes or laughing matters are still in a big way subject to his terms and we have to work on introducing him to other ways and especially, more social ways to laugh with others. (which he is-but unfortunately it’s to do with laughing at others’ mistakes!)
11) He never liked to watch mainstream TV until he was about 4 years old. Instead, he would just watch his DVDs again and again (and even those, he would always hide in the corner of the room watching the new ones until he’s comfortable with them). I think this is because of his need of predictability and with mainstream TV, he wouldn’t know what would come next.
From this experience, I have found there to be a spectrum on these stories. On one end, there are those that have noticed something different from the day the child is born and on the other end are those who say their child developed normally until about a year old (usually when the MMR shot was given) and that is when they notice their child starting to withdraw and change into a different person.
Raiyan was our firstborn and furthermore, he was the only baby in our family at that time so Jeff and I never had anybody else to compare him to. When he was growing up, we weren't particularly alarmed with anything apart from his speech delay and anything he did, even when highlighted by others to be slightly unconventional, we would merely conclude that the behaviour was part of his unique personality (it didn’t help that I have always been the type of person that shuns conformity and always strive to stand out from others!). So for example, I would take pride when others comment on his incessant need to line up paper cups to be on the same level with each other (when served during a family function) or how amazing it is that he never scribbled on the walls, both of these behaviours you wouldn’t normally find in typical children. Jeff and I, more often than not chose to view his “difference” positively and never negatively. On the good side, this shows how openly accepting we were of our child’s personality and character and disregarded the need for him to conform to expectations of others. Unfortunately it also meant that we were turning a blind eye to symptoms we should have alerted ourselves with.
So needless to say, after Raiyan's diagnosis, Jeff and I have gone on overdrive in educating ourselves about autism by reading many books, articles and blogs particularly those shared by other autism parents. Symptoms and signs have always been an interesting subject because that is the first question others always ask. So much so that Learning Ladders published and distributed a booklet on signs and symptoms during our official launching event. I find this need to learn more important as I have always intended to have many children (I’m thinking at least five...) so this way I can learn to spot the signs as early on as possible. In fact, I am already on high alert with pweshes Addin (who happen to look exactly like a mini Raiyan), constantly observing his actions, and keeping in check with all the milestones expected of him. As I have mentioned before, Alisha at 2 years old, seems to be a typical child. She is talking and communicating easily with others and is constantly in an attention seeking mode (sometimes a tad too much-ngalih pulang melayan!)
With the benefit of hindsight, I am remembering more and more signs Raiyan displayed in his early years (and not due to him being born premature) which are clearly distinguishable from what I saw with Alisha and her early development. I am quite ashamed to admit that there are times when I am anxiously and nervously on the lookout with Addin for any of the symptoms that Raiyan had displayed in his early years so as to reassure me that Addin does not possess those symptoms and so there is a likely chance that he is not autistic. (Though we would be redha if that happens anyway).
Just to share, my earliest memories of Raiyan's symptoms which I didn’t see in Alisha and am not seeing in Addin so far (and also some I was amused to discover were shared by other autism parents too) are:
1) He had poor eye contact as early on as 4 months old. My sister Tiwin only met him for the first time at that age having been away when he was born. At their first meeting, Tiwin couldn’t help noticing that Raiyan only looked at him from the corner of his eye and when she looked back at him he would look away! There is some resemblance between my sister and I so I can’t help thinking that he was interested in looking at her face but at the same time was not able to handle it when she would look back at him;
2) His first tantrum was when he was 7 months old and it was on our trip to Sydney. After spending a whole morning out and about shopping, he suddenly started screaming at the top of his lungs for no apparent reason (we assumed he was just hot) and we weren't able to quieten his screams for more than an hour. We tried almost everything but he just refused to stop crying until after about 20 mins of being in the hotel room;
3) He never crawled nor raised his knees and body up but instead had a strange combat movement of shuffling his torso across the floor to move around. Therefore, he leaped from having this strange combat movement to straight away walking alongside things he can hold on to;
4) He was fascinated with the spinning fan on the ceiling as early on as 2 months and would just stare and stare at it;
5) He never knew how to hold his bottle properly that we had to buy bottles with handles and he used it all the way until he was 4 years old;
6) He was always such a deep sleeper. Though this may be contrary to some parents’ accounts of their children having sleep problems, Raiyan’s deep sleeping pattern was still peculiar in that, we would be watching TV on full blast volume with him sleeping in his cot in the same room or Jeff would be pushing him sleeping in his stroller in high speed across Manhattan along the bumpy blocks and streets and he wouldn’t budge at all and still be sound asleep;
7) He never babbled until he was probably about 18 months old. Instead he just screams "EEEHHH" or "AAAGGHH";
8) He was never fussy or “pemilih” with people. In hindsight, this was probably because he was indifferent as to who was with him anyway!
9) He was terrified of small enclosed places that he would uniformly cry at one of our aunties’ house during makan2 because there were too many people in a small room. After a point, I’m sure my auntie was jaded with our repeated excuse of “ia kan tidur/ia baru bangun tidur”;
10) There is this video of him laughing away (at 7 months old) after finding Tiwin sneezing absolutely hilarious. From there, we could have concluded that he was a social baby after all, being able to joke around with others. But again, with the benefit of hindsight, I am learning that his way of laughing or “socialising” was still different because he was only laughing at the act of being “shocked” by her sneezes and not even once when he was laughing was he looking at Tiwin. Hence, that precludes that incident from being a “social” connection. In addition, Raiyan can always, like at the switch of a button, be made to laugh hilariously by being “shocked” or kena kajutkan. He loves this game so much that even at 5 years old, it is a sure fire way to draw out his infamous elmer fudd cackles. Clearly, this means that jokes or laughing matters are still in a big way subject to his terms and we have to work on introducing him to other ways and especially, more social ways to laugh with others. (which he is-but unfortunately it’s to do with laughing at others’ mistakes!)
11) He never liked to watch mainstream TV until he was about 4 years old. Instead, he would just watch his DVDs again and again (and even those, he would always hide in the corner of the room watching the new ones until he’s comfortable with them). I think this is because of his need of predictability and with mainstream TV, he wouldn’t know what would come next.
These are only some of the things I remember and I have yet to dig up old home videos that I haven’t watched yet in case I have missed others. Please don’t be overly concerned if after reading the symptoms I have listed above, you notice they are inherent in your typical children. Remember that there will always be an overlap with the behaviours of typical and autistic children. But what is striking with autistic children is that their different behaviours happen more frequently and intensely and when combined with typical behaviours, the majority would always consist of the strange ones.
As I have said, I do find it helpful for me to single out these early signs of Raiyan because the earlier we spot the signs the earlier we can intervene with our other babies if we feel there is a need to do so.
Apart from that, making the list also enables me to exchange more lively stories with other parents on such a mutually fascinating subject. Any of you readers identify with any of the symptoms that I shared?
Catching the Ball!
Because one autistic trait is difficulty in recognising depth perception, this may affect their ability to catch a ball thrown at them, something others may take for granted as something easy to do right...
I am so grateful for the motor skills programme that Raiyan goes for at ISB every Friday as that was where his buddies really played throwing and catching balls with him until Raiyan finally knew how to catch a ball with his own two hands.
The above video is great to demonstrate as you can see how he used to attempt to catch a ball (as seen on the first try) and then you can see him succeed on the second try! Alhamdulillah!
