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?
He's also really good and fast on this balancing beams.. He keeps saying "I am balancing!" at the same time too!
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?
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!
This is Raiyan talking to his cousin Zaty's cats! Sometimes I do wonder if he has some secret communication with animals! Haha!
- You can try and say Hi Raiyan first but if he doesn't say hi back, go up to him, squat down, get down to his level and try and get his attention first and say it again. You don't have to be loud (he's not deaf) and you don't have to speak slowly (he would know what Hi Raiyan means hehe);
- Introduce yourself by saying "My name is ____ "
- You can ask simple social questions like "how old are you?", "where do you go to school?"
- You can ask simple questions such as "what are you holding?" (and with Raiyan's track record, he's always seen holding something!). When you want to pursue more questions, keep it simple with only WHAT, WHO, WHERE and maybe WHY questions to do with that item. And do ask one question at a time. It takes him a while to process just one question let alone a series of them. Be prepared for him to not answer straight away. If after 8-10 seconds he still doesn't answer, you can try and ask the same question again.
- If he answers in a fast mumble, you can try and say that you don't understand and ask if he can say it again slowly. More often than not, he would repeat what he said but in a cheeky "know it all" tone and saying each word a tad too slowly and clearly!
- If you definitely want him to talk to you, be prepared to get into a conversation about animals-so you can ask him about his visits to the zoo, what animals live in the sea, what animals live in Africa etc
- Do prepare for Raiyan to go off on a completely different tangent whilst talking about something-this may be because he has seen something else that caught his interest. You know it's really difficult to sustain his attention for too long right?
- On that note, be prepared for Raiyan to just suddenly run off to the other end of the room as well. He usually does come back!
- If Raiyan gets too loud, you can do the sshh gesture and tell him "not so loud Raiyan"
- Be open minded and don't get caught up thinking too much of the "disability" or the "difference". Just remember that Raiyan is still a healthy, energetic and lovable young boy whose only shortcoming is not being able to communicate to others the "normal" way. That still doesn't mean that he doesn't understand what is happening around him and it certainly doesn't mean that he doesn't understand everything you are saying.
- Please don't get offended when he doesn't look at you when you are speaking to him. Even though you may think he's not hearing or listening to you speaking when he's looking somewhere else, have the initial confidence that he is hearing/listening nevertheless and wait patiently for a response.
- On that note, please do not talk about him to me or anyone else in front of him about things we shouldn't be discussing thinking he doesn't understand-more often than not and we may actually never know to what extent, he actually understands what we are saying and it's just naturally not a nice thing to do.
- Don't get offended and judgmental when you find out he doesn't speak in Malay. We are working on him to talk in any language and for now it has to be just English since his therapists teach him in that language;
- When talking to him, don't ask too many questions at one time. He will get too confused as to which question he is supposed to answer. Remember how much effort it takes for an autistic child to speak by computing all the words involved in this brain. So just imagine him trying to process just one question and then having to compose his response lagi!
- Don't talk to him in too long sentences and keep it in the positive. Try to avoid sentences like "do you not want to eat Raiyan" OR "don't you think this should go there Raiyan?". Instead, it should be "do you want to eat?" OR "where do you think this should go?"
- Don't be nervous and think that you won't be able to handle him at all. You can always try first with how you would talk to a typical child and you may be pleasantly surprised with how Raiyan may respond!
- You know how sometimes we want a kid to do something cute over and over again-don't expect for that to come easy with Raiyan. Depending on his mood, we can never get a guaranteed response from Raiyan everytime-however cute he is when he says "CORR BLIMEY!"
And just laugh and have fun! Raiyan is such a happy, cheeky boy who loves people (contrary to myths about autistic children-he just finds it more difficult to connect to other people but that doesn't mean he doesn't like them) and especially loves to be the centre of attention! He is such a pure and absolutely lovely boy and I challenge anyone who says otherwise!
- Raiyan has been promoted to Year 1! Jeff and I were actually agreeable for him to be retained in reception actually for fear that he may not be able to cope with year 1 seeing how his speech development is not all there. BUT, his teachers and therapists insisted that he does go up and that we'd be cheating him if he doesn't! It is not going to be easy I must say as the syllabuse in year 1 is quite a big leap from reception, especially in the amount of writings they do. And Raiyan absolutely HATES writing. I think it's mainly because of the endless amount of writings he had to do in his old school where he would write words that he has no comprehension of. But Jo said that he is getting better nowadays and we basically have to be more creative and show him the incentives in writing by making him write his own words or lines of stories that he is familiar with.
- His storytelling and recalling skills is really good now. You know how I've always dreamt of him telling me what he did in school. And now he's beginning to do that, though in very short sentences and he doesn't actually tell me everything he does (I would still need to double check with Jo and Kerri if what he told me was correct too!). Now we are starting to make it more specific by making him do something eg. locking the door and then 10 minutes later and half an hour later and then a day later, we ask him "Raiyan, what did you do at the door just now/yesterday?" and he would remember and say "I locked the door"
- His past tense is really good and he even knows a bunch of irregular verbs such as flew, blew, hung etc;
- His knowledge of obscure opposites is literally so advanced! He knows by heart a whole box of opposite lottos which consist of "monotone/multicoloured, witch/fairy, stationary/mobile;
- He is starting to learn to talk in proper conversations by asking questions and pausing to wait for the other person to answer;
- He has de-sensitised himself from the touch of glue and rain water. He is also a lot better with new sounds now (though I did mention that he is de-sensitised of new sounds in an earlier post, there are still times when he gets anxious though);
- He is more open to trying new foods now;
- He is so friendly (sometimes too friendly I must say) and waves and says hi to any random person he sees!
Some things we are working on more now is:
- Because he's been doing the phonetic sounds with Jo, we are finding him making the "P" sound a lot, sometimes to the extent that he'll spray when saying it to another person. I'm thinking it's a form of a stim because he tends to do this when he's bored or sometimes distressed with something. I've told him today that he has 5 more chances to do this and if I catch him doing it more than 5 times, then he's not going to Singapore Zoo (yes, a trip is imminent sometime this month!)
- He has been watching more TV than usual (well to excuse myself a bit, I was away when the increase started). So we have been cutting TV down a lot this week and found improvement in him being engaged with others since we've done that.
After this newly gained connection, can you believe that I'm leaving again for 9 days tomorrow? sob sob.. hopefully there's internet connection in Edinburgh! And I'm going to miss my babies so much!!