The Zoo

Rayyan with his cousin :)

Last Sunday we brought Rayyan to the zoo. It was his 6th or 7th trip there and I must say that for once, I felt that he was finally 'looking' and paying attention to the animals. The last few times we came, he didn't show much interest in the animals and frequently requested to leave the animal exhibits. It seemed that he was more interested in pictures and figurines than the real animals.

This time round, he was excited, especially when he saw his favourite animals like zebras and giraffes. He was jumping around and pointing at the animals. He also didn't throw tantrums and was well-behaved. It was a fruitful and enjoyable day indeed...

I.C.E

Rayyan had attended two sessions of the ICE Programme and so far the feedback has been good. The teacher will actually work with him in her room first before encouraging him to play with those his age at the preschool centre. I couldn't send him for the sessions but I am very glad I received constant feedback from the teacher.

The first SMS I received from his teacher yesterday evening... "The session started with Rayyan crying but within 10 mins, he settled down and followed the day's activities well."

The second SMS... "He settled down within 5 mins and stayed on task in the room and 'shared' a tray of toys with 3 other children."

Will have a talk with the teacher to get the details but for now, I am really happy to hear such positive feedback :)

Copy Me!!!

'Copying' is a fundamental skill that ASD kids have to acquire. If they can 'copy', they can then move on to following instructions and do what is required of them. Whenever I work with Rayyan, I will infuse 'copy' skills... like asking him to do certain movements or follow certain patterns. He is making very good progress and I hope he will use that skill in other settings too, for example, like in my previous post, where he is required to follow movements during Music Time...

AAS

Yesterday, there was a school function and school ended at 10.25. I took this golden opportunity to pay Rayyan a visit at AAS. I managed to get feedback from the teacher regarding his progress and managed to see my dear boy 'in action'...

Yesterday was my boy's 5th session at AAS. The teacher said that he has made progress. Initially, he cried continuously during Circle Time (not surprising to me) but now he will just whine a bit and then he's alright. He is also doing well for table activities. He hates Music Time though. He used to cry non-stop but the teacher said that now, the teacher will bring a book along and he will be busy with the book and will not cry. The teacher hopes to get him used to the setting first before removing the book.

I managed to observe him through the glass. He didn't follow the routine done by the teacher but at least he didn't cry. I really hope that Rayyan will get used to the setting and routine and will soon be more involved during Music Time. And what I saw from the other kids was indeed very encouraging. Most of the them could follow the movements done by the teacher, tapping their maracas, making all the different movements, dancing along, etc... They were indeed very involved and what I saw kind of gave me renewed hope...

And there was another thing I noticed.. a group of I would call 'gung-ho' mothers, sitting at the corner of the centre. They were talking animatedly on how to help their son, what methods to use, where to go to get certain stuffs for their child, etc.. They were indeed very passionate and I noticed a camaraderie between them. Somehow I felt... rather envious... I wish I can come every week and join them and have discussions with them and share my experiences with them....

But the best part was Rayyan's reaction when he saw me... His session has ended then and he was walking to get his shoes. He saw my helper and hugged her.. I called out to him and he suddenly couldn't wait to get to me... ran over, hugged me tightly and was so excited that he started jumping and laughing! And he kept looking back to make sure that I was really there!! It was really funny I tell you... And then of course he didn't want anybody else to attend to him and was clinging on to me all the way home....

Anyway, before I end this post, let me just share this touching poem I found at the centre...

Heaven's Very Special Child ~ Author presently unknown
A meeting was held quite far from earth,
It's time again for another birth.
Said the angels to the God above;
This special child will need much love
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care,
From the folks he meets down there,
He may not laugh or jump or play,
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So lets be careful where he is sent, we want
His life to be content.
Please, God, find the good friends who
Will do a special job for you.
They will not realize it right away,
The leading role they're asked to play.
But with this child sent from above,
Comes stronger faith and richer love.
And soon they will know the privileges given,
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is Heaven's very special child.

ICE (Intervention cum Educational Programme)

I just brought Rayyan for another assessment and this time it's for a programme called ICE. ICE provides one-to-one specialised intervention for children with special needs in a mainstream preschool environment. What happens is that Rayyan will attend twice weekly sessions at Presbyterian Community Services (mainstream preschool).

Each session lasts an hour and the teacher will actually guide him while he is there. He will be encouraged to socialise with peers his age and take part in the activities. An IEP (individualised education plan) will be drawn up for him and there is also one home visit. Sadly, the whole programme consists of only 20 sessions and the whole programme costs about $1500. Yes, it is costly but if it benefits him, it is definitely worth it. Anyway, aren't all programmes for these special needs kids costly???

So Rayyan will start next week and I really hope he will learn how to behave in a school environment. I also hope he will learn to socialise and be more comfortable among his peers. This reminds me of the conversation I had with the teacher, Ms Susila, a very nice, cheerful lady. She told me that when parents are asked of the short and long term goals that they have in mind for their child who are enrolled in the programme, some parents said that they want their child to learn how to read or talk. She said that this can be pretty far-fetched as there are only 20 sessions and she also hope that parents will think more about improving the child's behaviour and life skills.

Indeed, I do agree with her. For me, I want Rayyan to acquire some play skills while he is there. This to me is fundamental. When a child knows how to play appropriately, he will feel more comfortable amongst others and this in turn, will improve his social skills. Others around him will also accept him more readily if he can play together with them. So that brings me to the next goal, I want him to learn to socialise with his peers. He doesn't have to talk to them but play alongside them and be comfortable among them. Next, I want him to learn to sit quietly in a classroom and be part of the group, learning together with his peers.

Those are my three main goals. If he is able to achieve all three, I will be very, very happy indeed. If not, even if he managed to achieve only one, I will still be thankful and pleased. I really hope he will gain something from this programme and that this programme will be a stepping stone to other achievements...

Sheer Determination

He was perspiring profusely but determined to complete the obstacle. He went from one rope to another, slowly but confidently. It might look really easy but I think it took sheer determination for him to complete the whole obstacle without whining or giving up.

His determination and resolution tugged at my heartstring. Go Rayyan! You are Mummy's star!

Out of Control

Just spent an exhausting day at work. Looking forward to peace and quiet. Looking forward to seeing my precious boy. But Rayyan was cranky. No, he wasn't just cranky, he was out of control. Kept crying and crying at the top of his lungs. We didn't know what he wanted. Tried to console him but everything seemed to be wrong. He was crying and crying, shouting and shouting...

And suddenly, all hell broke loose. Felt this immense anger consuming me. I was totally furious. And I gave him a beating. I slapped and slapped his legs. Then I walked away. He didn't stop. In fact, it got worse. He was staring at me through his tears and cried and cried and shouted and shouted. And I went over to him and gave him a second round of beating. I felt this huge, mean monster inside me, controlling me. This time round, the two maids in the house (I was at my mum's) intervened. They hugged him and sheltered him and begged me to stop. One even cried.

I then retreated to one of the rooms. Sat down on the bed. I felt numb. I felt angry with myself. I felt disappointed with myself. I felt like crying. But there were no tears. No tears at all. It was a turmoil of emotions. Rayyan wasn't the only one out of control. I was out of control too. Why did I do that? What did he know? He didn't understand...

I then calmed myself down and tried to think of all the possible reasons that made him behave in that manner. And suddenly it dawned on me that it must be the books. He wanted books. You see, Rayyan stims with books, especially books with animal pictures. He will actually look at a page in a book and get excited. He will run or jump or flap his arms. And I don't like to see him behave in that manner so I kept ALL books, both at my place and at my mum's. He was totally cut off from books. First three days after I kept all the books was all right but after that he got cranky and seemed to be looking for something. And the day this episode happened (a few days ago) was the fifth day.

And my prediction was right. When I went out of the room, I saw him opening drawer after drawer and after he finally found a book in one of the drawers, he was his usual happy self! And I then realised that he NEEDS to stim. It is a way for him to calm down, for him to let off steam. And I can't totally cut him off. That wasn't the way. I should have controlled and tried to reduce the stimming but not totally cut him off. Imagine taking away drugs from a drug addict. What do you get? Total mayhem!

We then consulted his teachers and occupational therapist at AAS about this and indeed, they also informed us that we cannot totally cut off his stimming or take away things like that. This has to be done gradually.

And till today, whenever I think of this episode, I feel ashamed. Ashamed with myself. Ashamed for not trying to understand him. Ashamed for using force on my very own son. I should have walked away, I should have retreated when I felt anger mounting in me. I should have been more rational.

And I have been asking myself this question..... Am I even fit to be his mum???

Why must the children suffer?

This post is not specifically about Rayyan, just something very general. I just need to blog about this....

This afternoon, my ex-student came to the school. He's not exactly an ex-student, in fact, he has to be in school but he has to take a break because of bone cancer.

Anyway, when I saw him, I almost cried. He lost so much weight, was really pale and as I got closer to him, I noticed a mean, long surgery scar from his knee all the way to his ankle. He was also limping and told me that he just had an operation and his bone had been replaced with a piece of metal.

By this time, more students were coming over to talk to him and I saw how hard he tried to be cheerful. It was totally heart-wrenching. I was holding back my tears all the time... To make matters worse, I felt really, really bad... I knew about his condition but didn't have the chance to see him as I was too busy. But really, no matter how busy I was, I could have spared some time to pay him a visit...

So we talked, I asked about his condition, his treatments, etc... I then treated him to a McDonald's meal and then sent him home. On the way to his place, he talked about his treatment... about how he has to be in hospital for a week and go through chemotherapy for 5 days straight everytime he is there. And each time, he has to go through 6 hours of chemotherapy... sometimes from 9pm to 3am! He talked about how fearful he is whenever he sees the chemo medicine. He talked about how he couldn't eat days after chemotherapy because he doesn't have the appetite and feels nauseous. He talked about how his first two medicines were not suitable for him and he had horrible rashes. He talked about how he misses school and friends....

And all the while, I was choking back my tears... I know that this is seriously immature but I still have to ask... WHY? Why must children suffer? What have they done wrong? Why must there be children who suffer from chronic illnesses? Why must there be children who have special needs? Why must there be children who are tortured and beaten to death? Simply, why must some children suffer so much more than others or deprived of a normal, healthy life?

I wish I have the answers because right now, life seems so dark and cruel... I know you have your reasons God. I know you have a special place for them in heaven in the afterlife but for now, please help lessen the sufferings of these children....

Psychological Assessment@KKH

Gosh... it has been eons since I updated this blog... so much has happened the past few weeks or so... I had a dialogue session with Rayyan's teachers and therapists at SPD, Rayyan had gone for his psychological assessment at KKH, Rayyan had started his first session at AAS this morning, my very first domestic helper is back with us (thank God) and I am currently teaching her how to handle Rayyan... and so much more...

I guess I will start with his psychological assessment at KKH.. His assessment was last Friday and well, it is now kind of 'official' that Rayyan is indeed in the autism spectrum. I did not expect anything different... Neither did I expect a miracle. I am more than ready to accept the fact that my son is autistic. In fact, I did not leave the place feeling sad or depressed.. But I did leave the place feeling frustrated and ANGRY! I was so angry that I did not even talk to my Hubby one whole day!

A few things contributed to that frustration and anger but first, let me just explain the procedure or rather, process that took place.. The whole assessment was done in 4 hours in a small, clinical room. The psychologist seemed rather rigid to me but well, maybe she has to be like that for the assessment to be carried out more effectively.

Apart from the cupboards and cabinets, there was a small table, two small chairs, a mat and several toys. As usual, I was bombarded with questions and told to fill up a long questionnaire. The psychologist told us that she wanted to observe Rayyan and get him to complete several tasks.

Rayyan played with the toys for several minutes and then got bored of them. He was agitated that he was locked in the small room and kept going to the door. Unfortunately, he was also super hyper that day, running and jumping around.

Rayyan was then shown pictures and asked to point at several items (animals, household items, stationery, etc) and he did that excellently. Then came inferring questions like..

What vehicle goes on water?

What do you use to cut?

Where do you go to bathe?

And as he was not exposed to such questions, he scored poorly. Each time he was given a task, he was timed too to see how fast he answered each question. He was then asked to do puzzles.. two and three-piece puzzles which are actually not a problem for him. In fact, he was really fast but after the fifth or sixth puzzle, he got bored and didn't want to do it anymore. Why do they have to give so many?

By this time, he got more agitated and bored and insisted that we open the door for him. He was then asked to 'copy' the psychologist's actions by stacking blocks. At first, he cooperated but after that, he didn't want to copy and kept bringing down the blocks that the psychologist built! And since the psychologist needed to complete the task, she kept asking him to do it. And Rayyan refused to cooperate..sigh..

The psychologist then moved on to other tasks, like asking him to point at his body parts, jump, kick a ball, etc... And the psychologist also asked us many questions regarding his ablilities.. like body language, requesting for items, etc....

And after a gruelling 4-hr session, she finally concluded the assessment. She concluded that Rayyan is indeed in the spectrum. I asked her if he is at the mild, moderate or severe end of the spectrum but she told me that they wouldn't make that conclusion at this point of time because he is still very young. She said that another assessment will be done when he is 5 to see his progress and determine which kind of school is suitable for him.

She then discussed about Rayyan's cognitive ability and said that at this point, Rayyan scored a low average because he can only label but doesn't know how to infer, he doesn't know how to use body language... basically he doesn't understand language much. She also said that much needed to be done with regards with his behaviour.. He needs to have a structured routine, he needs to learn to request for things, he needs to play meaningfully, he needs to learn to sit down and do a task, he needs to learn to write........

And how was I feeling the whole time? Like I said, not sad but angry and frustrated. I am not trying to be defensive but I didn't like the way the assessment was done right from the beginning. How can a boy be subjected to an assessment in a confined, small room for 4 hours straight? I did ask if we can have a break and let him go out for a while but she said no, the assessment must be completed on time. And when Rayyan was agitated and wouldn't cooperate, she took it that he didn't know or didn't understand. Furthermore, how can you conclude a boy's ability in just one session?

But like I said, I am not trying to be defensive. In fact, the other reason why I was angry was because, I was angry with myself! I already know what needs to be done. I agree with her regarding the fact that Rayyan needs to have a structured routine, he needs to learn how to play, he needs to learn to request for things, he needs to work on his gestures and body language,etc... I know all that but the thing is, I am too busy to teach him and that is why, I was angry!! I felt totally useless and irresponsible towards my own child!

That was why even though I disagreed on several issues, I didn't protest what the psychologist said.. I actually treat the assessment as a wake-up call.. A wake-up call that I must do more, a wake-up call that I can't be lax, a wake-up call that my son is depending on me to help him. I know my son better than anybody else in the world, certainly much better than a psychologist who only spent 4 hours with him.. I know that there is so much potential in my boy.. I just need to try my best to unleash that potential...