Indistinguishable?

Okay, now that I've gotten that confessional side of me out of the way, I shall just dive in and inform all of you on how Raiyan is doing.

Raiyan is doing absolutely great!! Jeff and I attended a parent-teacher meeting thingy about 3 weeks back and after our initial apprehension of being on the receiving end of continuous complaints of Raiyan's autonomousity (is there even such a word?) or more specifically his tendency to not listen to others, we were more than pleasantly surprised that though he still does that at times, it is in no way at a worrying state, AND his competence in learning far outweighs that particular fault of his. Jeff and I thoroughly enjoyed every minute of our 2 hour consultation with all of Raiyan's teachers. And I'm not exaggerating here folks, BUT at least 2 teachers particularly said the controversial word: That Raiyan is now "indistinguishable".

I know ABA gets a lot of flack from the autism acceptance community because it apparently strives to make the autistic child ultimately look "normal" and therefore you could argue, "indistinguishable" from his peers. Now, if you have been an ardent follower of this blog from when it first started in January 2008, you would know that I never had such intentions when Raiyan first embarked on his ABA journey. All I ever dreamt of for my baby boy was for him to be able to communicate with others and to form meaningful relationships. Though we were committed to work on his behaviour (tantrums, stims, no eye contact, lack of social skills), they were hardly a priority for us as all I ever really wanted was to be able to have a conversation with him.

Now, we know Raiyan has gone beyond that point when Kerri informed us some months back that all his basic language are in place and what is left is for him to utilise them appropriately, together with acquiring appropriate behavioural and social skills.

So how did I feel when the teachers mentioned the word "indistinguishable?"

• For starters, I felt relief because I have always been worried about Raiyan bringing too much attention to himself to the point that the teacher might single him out for whatever reason and he may need to be reprimanded. There have been times in the past where Raiyan was attracting such negative attention that there were points where we felt we were being cornered out of the school! So to know that the teachers were not more worried about him than the next child is indeed a major relief; 
• Disbelief. I still constantly worry about Raiyan. Admittedly, not as much as I did 18 months ago but I am still worried about him not being able to progress and attain the next level he is expected to. I guess being a parent, and not just a special needs parent, will always cause me to have that little "uri" (worry in malay) voice at the back of my head. So even if I kept hearing the teacher saying Raiyan is indistinguishable, I think at this point I am still choosing to not believe it so much only because I don't ever want to get complacent about it all. 
• Proud. I know for a fact but cannot possibly describe into words how hard Raiyan and his therapists have worked this past 22 months. So I believe the compliment of being called "indistinguishable" is a testament to the extraordinary efforts that have been put on by all of us as a team but especially Raiyan, Kerri and Jo to get him to where he is now. 
• Confused (?!) and I think this is what relates most to my long hiatus in blogging- HOW am I supposed to write about Raiyan and his autism when apparently, he is behaving not much different than the next boy in his class? 

In the end, all I can take away is an "opinion" of his teachers and technically and strictly speaking this by no way means that Raiyan is no longer autistic. The fact that remains is that he is still going for his 4* a week ABA therapy, we are still constantly working on his social skills, we are still working on him expressing his emotions better, we are still needing to take double or even triple the time to explain him something new, which typical children can understand straight away.... and for the most logical reason, his autism spectrum disorder diagnosis dated 8th January 2008 still stands and the only way to once and for all "undo" that diagnosis (IF he is indeed indistinguishable) is to have him re-diagnosed which we still don't feel quite ready to do just yet. (We are however planning for one sometime next year). 

The point is, I have loooonnnnnngggg accepted Raiyan to have autism and what's more than that, I have loooonnnggg been grateful that he has it because as cliche as it sounds, our family's lives have simply been so much richer and more meaningful ever since it touched us and entered our lives. So YES,  everyone who meets Raiyan for the first time would most probably have NO CLUE that he is autistic. And so, it would be easy for us to hide it and act that Raiyan is a typical boy. 

But I just can't do that. Raiyan is where he is now with autism playing a part along the way. It HAS OBVIOUSLY been a part of him all these years. I don't know how much it's a part of him now but I don't doubt it's still there. At the same time, I am not at all certain how much it will be a part of him in the future. All I am saying is it doesn't matter. Raiyan is Raiyan and I welcome you to continue reading about him in whatever way you want to view him. 

What did you do in school today Raiyan?

Finally, Raiyan is starting to be able to tell us what he does in the school day. All this time, it was soooo difficult to elicit any type of response whenever I asked him simply "what did you do in school today Raiyan?". I soon realised that my question was too big, too vague and Raiyan just did not know how to answer it and not so much he did not know what the answer was. This was similar to us always asking him who he played with in school. At first, we just could not understand what was so hard for him to give us the names of the children he played with because we know for a fact (from Jo who sits in with him in school) that he does play with other children. What we discovered we had to do was to specifically ask something and to do it on a step by step basis.

So first we ask: Did you play with friends today? [Yes]

Next: How many friends did you play with? [Stuck - because he still thinks this is too big and it will take time for him to count all the friends he had played with]

Try again: Did you play with friends during breaktime today? [Yes]

Next try: How many friends did you play with during breaktime? [2]

Next and finally ask: Who are the friends you played with during breaktime? [ "him" and "him"!]

We can then also further ask if he played with other friends in the classroom or during any other time during the day and he would answer different friend. All of these just goes to show how important it is to ask "leading questions" whenever necessary to get him to what we expect him to answer and then once he's in that place, it's then easier to ask him other related questions!

So when it comes to what he did in school, we are using this similar pattern of questioning too by starting with something simple like asking the "subjects" he had sat in which he can do as they are more or less the same subjects he sat in Year 1 so he is already familiar with them. So I would ask him my favourite question of the day and he would just list the class timetable of the day in the order he sat through them - literacy, snacktime, numeracy, ICT, music and swimming. After that, I could be more specific and ask him what he did in ICT and he'd say he clicked on the computer to open a folder and he did some colouring etc But now he can even volunteer to say more like just now, he told me how he clicked his folder and then it was empty and Mr. Want was telling him something he didn't understand!

We are also really happy to hear that Mrs R, his class teacher has been nothing less than great. She seems to be really interested to know and learn the ways to communicate with Raiyan and to get him to follow her instructions. I've also witnessed myself her communicating something with Raiyan in a systematic way just on the second day of school! When Raiyan was checking with her if there is ICT today, I saw her tell Raiyan "Yes, but we have assembly, then numeracy and then snacktime and then library and then we have ICT" :D

Looking forward to hearing more about Raiyan's days in schools from now on!

Countdown to school

Raiyan is starting Year 2 (!!) in a few days time and similar to what we did last year, with it being a whole new classroom and a new teacher, we brought him round to school about a week earlier to do an advanced going around to familiarise himself with his new surroundings.

As some of you may remember, Raiyan's start to Year 1 last year did not run smoothly. Though the change in environment he already accepted because we had already done the early rounds, he was still disturbed by the change in timetable, change in classmates and most of all the change in "rules". For example, in Reception (the year before Year 1), he had to take his shoes off outside the class and also when he's about to go into the sandpit but somehow for Year 1, he didn't have to! There were also different rules about going to the toilet along with so many others that you can't help but just put down to some of the teachers' individual preferences. So to put a long story short, the rocky start to Raiyan's Year 1 really struck a chord with all of us caregivers and therapists that we are trying very hard to not let it happen again.

So we've brought him round to school twice already. the first time was just to know where his new class was, to take a look around the inside of his new class and also to meet his lovely new teacher for Year 2. We are especially grateful to the school for allowing Raiyan to do this and especially to Mrs R, the teacher for taking the time out of a very busy schedule I'm sure, to spend some time with Raiyan in the class. The second time, Kerri advised we take him in wearing his school uniform complete with his school bag and snack bag and this time, we even sat down to have a snack (which incidentally IS different as in Year 1, they had their snacks outside the class but now in Year 2, they eat inside!).

We are so happy to report that Raiyan was fantastic with all the change. He has really come to a point now that as long as we warn him earlier of what is coming, he really takes in changes and new environments in stride. Of course it is admittedly an added effort on our part to every time have a long drawn talk with him before we leave the house to say EXACTLY where we are going to go (and also repeating it again and again every time he asks along the way in the car! WHICH, if he sees us using a different route than he's used to, he will INCESSANTLY do until he's really convinced we are going to the same place!).

Mrs R has been really excellent so far as well and already we can see how well she is able to converse with him and she is quickly catching on stuff we have to constantly work on with Raiyan which is, keeping his voice low, not interrupting people when they are talking, looking in the eye of the person he is talking to and sharing his toys. Because we have been consistently encouraging all of this at home, it's really vital that it be the same in school too.

So school starts this Wednesday and we are taking him to school one more time on Tuesday like how we did this week. All of us are still awfully nervous though we are feeling slightly more positive after the good early runs so far...

Wish Raiyan lots and lots of luck! Will keep you all posted!!

Being Social

As some of my followers would know by now, one of my biggest worries is the idea of Raiyan not mixing in well in class or when being around other kids in general. This concern was especially heightened when he had such a rocky start to the school year with there being complaints of his loud voice and his resistance to turn taking and sharing.

So it is no surprise that ever since then, we have been going on overdrive trying to instill in him one social skill rule after another. Every time he does something that I would perceive as rude or socially unacceptable, I would drill it in him to not do that again and if he doesn’t do something that he should be doing, like not responding to others’ questions, I would incessantly remind him to look at the person and then answer the question.

All of us around him, including Kerri and Jo gets kinda edgy over this that you can practically see the nerves on our faces every time somebody new asks Raiyan a question as we are just waiting with utter anxiousness for his response! Which is why I still laugh at one moment during our Hari Raya open house when Jeff’s boss was asking Raiyan his name, and there was Kerri and Jo on the other side of the room stopping cold in the middle of eating, anticipating Raiyan’s response and as soon as he said “Raiyan” they BOTH just exclaimed “good boy!” LOL!

However, I was recently reading up on social skills in the “Work in Progress” book and learnt that the best way for these children to pick up natural social language and incidentally social “rules” is through mixing in with their peers and not so much learning it from adults. It’s because children do have this innate desire to please their friends much more than their parents or teachers. Furthermore, the “natural” social language amongst kids are clearly so different from the “natural” social language of adults.

And then it hit me that it may not be such a good idea for me to go TOO overdrive with teaching him social language and rote teaching social rules because at the end of the day, being social is a spontaneous and natural thing and as soon as it looks planned, it ends up looking contrived and NOBODY likes fake people right?

And in terms of his language, the systematic way that he is taught inevitably leads him to sound very “prim and proper” when he talks which is completely fine with me as I am just content to have him talk. But the thing is sometimes he does end up sounding like a middle aged English professor! So lately, instead of forever correcting his broken English and making him speak in longer sentences, I’ve also taken a step back in that because I realize that I personally do not know any 5 year old who speak in a grammatically accurate 6-7 word sentence anyway!

Raiyan is at a point now where his personality is shining through and though I do accept that his language is not completely there and he still tends to talk on and on about his interests without really attuning to his audience, I have to accept that he’s still a kid, he will eventually learn all these so called rules slowly but through experiencing them and not just by being told about them but most of all, I have to be confident that despite all the shortcomings that I only see because I’m so stressed out over them, other children are also children, who are not cynical and who will be able to just see Raiyan for the sweet and delightful boy that he is. InsyaAllah he will get through this and at least for now, I’ve taught myself to not be so worried about it anymore. :D

School Update

It’s the end of the school term and we are happy to report that the rapport we have with the school is still very encouraging. Raiyan’s school report was very good (I will post excerpts from that in the next post) and so after the quite rocky start to the school year, our family are now more optimistic about seeing him continuing on in school with no major difficulty, insyaAllah.

Of course, the arrangement that we had with the school as explained in this post had to be reviewed and as seen clearly from Raiyan’s report, one can deduce that it did help. However, what we didn’t want the administration to misinterpret was the fact that Raiyan needed the in class support to “coax” him into doing the work and NOT to “teach” him doing the work. Or more specifically, the in class support was there to address his behavioural issues rather than the academic side. Because we know for a fact that his school work is actually extended by Jo and so he is actually far ahead from some of his classmates, we know that Raiyan wasn’t having any problems in actually achieving the academic standards expected of him in class. His problem is when and if left alone, he gets bored and then there is the risk of him either switching off and withdrawing into his autism world OR he becomes disruptive by shouting in his loud voice to get everybody else’s attention. That is when unfortunately he won’t do his work in class even though he KNOWS how to. And THAT is when the in class support becomes useful.

However, his class teacher reported that there hasn’t been any disruptive behaviour for a very long time and she and the assistant teacher are now able to communicate and interact with Raiyan better after having spent some time getting to know him this term. Thankfully, they share the same objective with Jeff and I for Raiyan to start working towards independence. It seems that most of the time, Raiyan IS able to cope independently in class but there are still the odd times when he doesn’t and those are when it helps to have the in class support around. We are just slightly concerned because financially, this may mean that we are paying someone to be around as “back up” where most of the time she would just be sitting in the background in case Raiyan misbehaves. At the same time, we also don’t want her to be hovering above Raiyan at all times because that will delay his independence even more.

So we had a meeting with the Primary Principal, Raiyan’s class teacher and Jo and extensively discussed all of the above. Everyone agreed that Raiyan is more than fine academically already so even if he was to fall back a bit next term due to a change in the arrangement, he will still be at an acceptable position. Alhamdulillah, Jeff and I were so pleased to see that everyone was on the same boat in wanting to see Raiyan start moving towards independence so cutting back on the support will be essential.

In conclusion, we all agreed that Raiyan will only have full support for the first week of term and then this will be halved for the next 2 weeks and after that he will be getting no more support in class and this will be on a trial basis which we all be monitoring closely.

Of course, Jeff and I were plenty elated after that because we were really expecting the school to insist we keep the support because we had assumed that they will argue that it was because of the support that Raiyan had such a good term report. But thankfully, we are blessed with a really supportive, dedicated and understanding class teacher who is now willing to have Raiyan be independent in class- just like any other child. Believe me, from some of the comments I had from the school when Raiyan first started this term, this is very reassuring and comforting for me as Raiyan’s parent to know.

Of course it’s not going to be easy and naturally we are very apprehensive and not completely confident that he will pass the trial with flying colours but the very fact that he’s been given the opportunity to do this already means so much to our family and all of us will work extremely hard to prove that Raiyan can do this! Will keep you all posted!

But for now, enjoy the holidays!! I know Raiyan is! :D

Week 45 Progress

Raiyan’s progress has been coming along really well. What we have been working on the past 2 weeks:

1. Auditory Memory: Here we are training Raiyan to really listen to what we are saying that then later on ask questions to see if he can recall what he heard. A few months ago, we checked his auditory memory by making him remember a sequence of things so this is definitely a vast improvement from then because he actually understands a story we tell him and getting him to remember. An example of a short story would be “Meg goes to the grocery store. She buys apples and bananas and pays for them at the cashier.” Then we ask Raiyan “Who went to the grocery store” or “Where did Meg go?” and “what did Meg buy?” and “who does she pay to?”, all of which Raiyan can answer!

2. Opposites: This one we are merely revising because he has been sporadically doing opposites all of these months so it’s a matter of consolidating all the previous ones he has learnt and to make his knowledge of them solid, which they are! He even knows “distinct” and “blurred”!

3. Following directions conditionally: On top of making Raiyan listen carefully to instructions, we are also making it one step harder by making him do a follow up action if what we are saying is correct. For example, we tell him “Raiyan, if you are wearing a blue shirt, rub your nose”. Of course, if he is wearing blue, it would be correct for him to touch his nose. But he didn’t quite get this so easily because even when he was wearing red, he still touched his nose! Well you can’t really blame him because all this time all we’ve done is tell him to do something! Hehe.. but he’s gotten the hang of this already and in fact, he’s started to tell US conditional instructions too!!

4. Imitates peers: Jo would bring a fellow classmate to accompany Raiyan during some therapy sessions and make him do or say certain things that Raiyan has to follow. So far, Raiyan can easily follow gross motor movements and actions but is still working on following verbal responses.

5. Comprehension: This is a follow on from item 1 above, because we would make Raiyan hear a story with a corresponding cartoon illustration and then follow instructions we tell him with regards to the picture. Eg. We use a picture of 3 factory workers in a car factory assembly line so after making him recall things from the short story we tell him, we go on to tell him to do things like “draw a line next to the chains holding the door” and “draw a circle around the man holding the paint can”. Notice they are very specific instructions that REALLY need tests his listening skills and auditory memory skills.

6. Visual Discrimination :We use this brilliant book called “1001 Wizard Things to Spot” which is kinda like Wally because they contain very detailed and crowded pictures and you have to spot and count a number of things within the pictures. It’s really good for proposition languages too because when Raiyan can’t immediately spot something, I can say, it’s on top of the shelf, under the bottle, next to the book”.

7. Listening to others’ conversations: Of course we are constantly working hard with the social aspects too so Jeff and I have been making Raiyan sit in and listen to our conversations and then we ask him “what are we talking about?” and ask more detailed questions about our conversations. Raiyan tends to then go off and talks about himself so we have to try to prevent that and make sure he listens to US and talks about US first before he starts talking about himself!

Behaviourally, he’s been really good for quite a while now where most of the time, he complies with what we say but not without some negotiations first. Lately, he has been stimming by putting his fingers in his mouth. I notice he does this as soon as he gets nervous or excited. We don’t really have a big problem with stims so long as they are controlled but with this one, we can’t help worrying about the fact that his hands are usually not clean when he’s sucking away on them. We told Jo and she said that next week, she’ll try and get a book on “germs” and hopefully we can teach him something from that book.

He has also improved with trying new foods and this morning, he finished a egg mayo and tomato ketchup sandwich with no drama at all!

Alhamdulillah for the progress! Till next time!

Things can only get better

It’s no secret that Raiyan has had a quite rough start to the school year. And I have been quite honest with my own feelings in handling this difficult time in a few of my previous posts. Sometimes I do feel like I should just be thankful that Raiyan IS in school and so I should just continue to feel highly indebted to ISB for still accepting him despite the mayhem he seems to be causing. But on the other side of the coin, I sometimes still can’t help feeling like Raiyan is totally manageable if one is to take the time and learn to handle him the right way and so I can’t help thinking that all this drama is actually unnecessary and preventable.

To classify dealing with these battling emotions on an almost day to day basis as being highly nerve-racking is not exactly an exaggeration. This on top of being completely insecure and uncertain of Raiyan’s future in a school we are unsure favours his presence or not.

Our feelings were therefore muddled upon receiving a letter from the school last weekend requesting a meeting to address Raiyan and his issues in class. On one hand, we were pleased that finally some level of communication between the parents, the teachers and the administration can be established so we can start avoiding the convoluted messages we’ve been getting before this (you know where we are told everything is fine but then we hear something else from Kerri or Jo). But on the other, we were tremendously apprehensive about finally confronting the issue head on for fear that this may be the opportunity for the school to once and for all, inform us of their inability to continue with Raiyan and so we gotta start packing... or at the very least, we were suspecting that the school wanted to ask for full time support for Raiyan in class which would obviously mean added expenses on our part.

Alhamdulillah the meeting went well and better than we expected and it goes far to show how important good communication is. Instead of reasons of not being able to cope, Raiyan’s teacher had requested more in class support for Raiyan because she feels Raiyan, being incredibly bright, has the potential to go far with the right support and she fears that he will be short changed if the support is not there. And instead of needing FULL time support, she merely asked that he get the support during the crucial times of the day when presently, Jo is only around during times that Raiyan may be able to cope independently.

We discussed lengthily many options to try like:
-shifting the timetable of Jo’s presence in class
- using one of Kerri’s trainee as additional support but at a lower cost
-reducing his ABA hours and increasing in class support hours and
-picking Raiyan up earlier from school

all whilst maintaining the amount of subsidised school fees we have been paying this term AND the costs of his ABA therapies to a certain cap.

So this morning Jeff managed to narrow down 2 options to propose to Kerri and Jo and hopefully we can start either one after Hari Raya. The school has also agreed to review the whole issue again at the end of the term which may mean that if Raiyan is settling in better, there may be less need for in class support and then we can start increasing his ABA hours again. Hence we are happy to see that the school is not expecting Raiyan to have support permanently.

But best of all, the meeting has really helped put Jeff and me more at ease about the school’s impression of Raiyan and how he is perceived by them every day. Sure he is hard work but Alhamdulillah, his teacher genuinely does look like she has Raiyan’s best interest at heart. Plus the fact that she thinks he is incredibly bright and he can go really far is always comforting for a special needs parents to hear as another person other than us has managed to see Raiyan past his label for who he really is. Something we hope more of others will be able to do. This has surely helped me in this “peaceful” journey of ours and hopefully things can only get better after this..