Bidding goodbye to 2009.....

The new year is approaching.... as 2009 makes its way out, I do wish 2010 will be a much better year for us. I hope to see improvement in Rayyan, I hope that he will start talking, I hope that I can be a better mum. Is that too far-fetched? I hope not. Just that and I will be happy.

As I read my past posts, I detect so much pessimism and sadness. I hope that will change. I want to be more positive. If I think that life is cruel to me, there're others who suffer more. A dear friend just told me that she recently talked to a lady who has two ASD kids and one with cerebral palsy. How does she cope??? So yes, I have a lot to be thankful for.... I have a good job, nice house, supportive family, wonderful husband and the sweetest child... Thank you, God.

No doubt, I worry about my son's future. No doubt, he has many challenges ahead of him. That is why I am here, to help him. It is my job as his mother to help him to my utmost ability. Maybe I am born for that task.

And my son is indeed special in lots of ways, he has the sweetest smile, he is affectionate and he has his own strengths. Yes, I should focus on his strengths. I anticipate many challenging waves in 2010 but I hope to ride each wave with optimism. Challenges make us stronger. Challenges make life more meaningful.

So 2010... Bring it on!!!!!

My sweet, messy boy at 10 months.

This photo never fails to bring a smile to my face :)

Cruel Fate

This morning I went to a prestigious all boys school to register for my nephew who is holidaying in NZ at this moment. He will be starting his secondary education soon and we are all so proud of him for getting into the school. While I waited for my turn, I looked around me and noticed the boys immaculately dressed in their uniforms. They looked smart, handling the registration and ushering parents and students around.

Will my boy ever has a chance to do this? Will he gain admission into a mainstream school or gain independence? Will he have lots of friends? Will he gain employment? Will he find love? I know I am looking too far ahead into his future but I can't help it. I feel an immense pain in my heart every time I think of this. I am so afraid that he will miss out on all these...

I recalled yesterday's events.... I felt so suffocated yesterday... After the frustrating speech therapy session in the morning, Rayyan had his ABA session in the afternoon. He cried for the whole of the first 30 mins. I am pretty much used to his crying and have somehow toughened up but yesterday, I was worried and frustrated that after two months, he is still crying every time his therapist comes.

Then it was dinner time and he began to throw a tantrum, refusing to sit in his high chair to have his dinner. He insisted on sitting in front of the television and watch his favourite show. I didn't want to accede to his request and he didn't want to accede to mine. It was like a game of tug of war. He was hungry but adamant to have his ways. He would creep up quietly to the dinner table and tried to scoop the food. I quickly put the food away and he started to cry. I tried to force him into the high chair and he started kicking his legs and flailing his arms. Then I brought him down again and refused to give him his food unless he behave and sit quietly in his high chair. This happened several times and finally, after close to 45 mins, he relented and ate his dinner quietly in his high chair.

By that time, I felt really suffocated and just needed to get out. When Hubby came back, I told him to take care of him and got out of the house. Went to a shopping centre nearby and that helped to calm me down a bit...

But while I was walking back, I started to cry. It just seems so hard at times. I am still grappling with everything that is happening in our lives. Right now, life just seems so unfair and cruel. Why must this happen to my son? Why? What has he done wrong? Why is fate so cruel to him?

My questions were never answered and I know they will never be.....

Right Choice?

I just brought Rayyan to one of the 'speech therapy' sessions appointed by the hospital. It was a complete waste of time and cab fares! Worse, it made me realise even more how feeble and lackadaisical our infrastructure is when it comes to special needs.

I thought that they would do some interesting stuffs to get him to make sounds (of coz I didn't expect Rayyan to talk!) or at least, teach me the techniques on how to get him to talk but no, it was an assessment. Assessment for what?! I was told it was the protocol, they need to assess his level of understanding, his hearing, his attention span, etc, etc....

Rayyan was made to point at different things, was given a few things to play with and was made to hear different sounds. While he was doing the different tasks, the therapist went through the checklist and recorded his actions. I saw a couple of ticks and many crosses and I got frustrated! I am not defending my boy here. I know Rayyan has poor eye contact, I know that his auditory comprehension is weak, I know that he has limited play but there were a couple of things that the therapist asked him to do that were above his capacity. I think that he simply didn't respond because the therapist's voice was too soft and her diction was poor. Even a normal kid would have difficulty comprehending her instructions. On top of that, I think the therapist is inexperienced because she kept referring to the notes in front of her as a guide.

What infuriated me I guess was the fact that all these notes would be in his record, would be with him all his life. When I first went to see the doctor, I was told that he will be assessed at about 3 years old and then if he needs help, he will go for EIPIC. Then he will be assessed again at about 6 years old to see if he is suitable for mainstream schools. So I know that all these nitty gritty stuffs will go into his record. And he deserves to have a fair and accurate assessment of his abilities, even though the assessment is somewhat an informal one. Is it fair for him to have his future 'stamped' by an inexperienced therapist?

I have heard of parents who refused to go to the government hospitals because they don't want their children to be labelled and discriminated against. Some would rather spend money to have their children assessed privately and then go on helping their children on their own. Now I understand why. I have heard of parents who would rather send their children to international schools which have better support for children with special needs. Now I understand why.

Apart from the EIPIC (which I am still queueing for), the other sessions I go to so far are fruitless. After the check-up at the hospital, I was given three slots for Occupational Therapy (OT) and two slots for Speech Therapy (ST). The OT sessions were so far apart from each other that I didn't think it was beneficial at all. In fact, the therapist was on MC during the last session and I was told to book another slot which would be about two months later!! I told them to just cancel the session as he is already going to SPD in January. Then the ST are not really therapy sessions but assessments!! Gosh!

When I first went to a polyclinic to have his development checked, I was keen on helping my son. That was my main concern. I was also thinking that by going there, it would somehow help financially. Now I wonder if I made the right choice...

Hide and Seek

When I picked Rayyan up this morning from his childcare centre, I asked the teacher if he threw any tantrums in the morning. I was so glad when she said that he behaved well today. This wasn't the case past two occasions..

First occasion, the teacher told me that he usually can't keep toys away. When the teacher told the kids to keep their toys and prepare for lunch, he refused to do so and when one of his peers took away the animal that he was holding, he threw a huge tantrum. The teacher then passed the animal back to him but he was too angry and threw the animal away!! Attitude!

Second occasion, the teacher said that he didn't like the show that was being played on television and insisted that the show be replaced with another. How did the teacher know that he didn't like the show? Well, he tugged the teacher's hand and led her to the front where the television was and kept jumping and crying. Stopped crying as soon as the show was changed!! Attitude!

Told the therapist about this and she said that this behaviour of his needs to be shaped. He always wants things his way. This will be a hindrance to his learning and development if not shaped from now. When I think back, I guess this is partly our fault. We always play a game of hide and seek because the thing with him is that if he doesn't see it, he doesn't make a fuss. At home, we will tidy up his playroom after he has gone to bed. At my sis' place, the maid will clear the toys after he has left. Once, the maid actually kept the toys in front of him and when he saw the maid keeping the toys, he threw a big tantrum! The maid was shocked and gave him back the toys. So he knows that by crying, he gets his way!

So the past few days, I made him keep his toys. As predicted, he made a big fuss but we followed through with the process. Now, after about a week, he will still whine and cry but not as loud as before. In fact, even though he is whining and crying, his hands will be taking the toys and putting them in the box. Yesterday, I made him keep the toys at my sis' place. This is a bigger challenge because the maid and grandma are there and they will always give him his way to avoid the tantrums. He cried but he helped keep the toys away. Not too bad..

Yes, we have to conquer his problems and not avoid them. We have been doing this all this time and it's not doing him any good. For example, he has been crying every morning when his Daddy prepare him for school because I am around and he wants to be with me. So I have been hiding in the toilet every morning!! If he doesn't see me, he won't make a fuss. But my therapist said nope, just let him cry. We are not doing him any good.

So yesterday, I did not seek refuge in the toilet. Before he left, I kissed him, told him to be a good boy and that I will pick him up later. He seemed to understand. Cried a bit but not as loud as before! Phew! I was so so glad... So we really have to stop this game of hide and seek...

Consistency is the Key

Rayyan's therapist resumed her sessions with Rayyan yesterday after a two-week break. Rayyan was at the door when he heard the sound of the lift and he checked out the person coming out of the lift. When he saw his therapist, he ran towards me and started whining and crying. He knew it was time for him to be 'strapped' down and do the tasks given. As I predicted, he cried 75% of the time.

Even though he is enthusiastic when I am the one doing the therapy with him, he doesn't like to do it with others. But he must get used to it, I can't be the one teaching him all the time, he will meet all sorts of teachers and therapists so he must get used to working with people outside his comfort zone.

And yes, consistency is very important, crucial in fact. Since I have been the only one doing therapy with him, he doesn't want anyone else. There is no consistency here and this resulted in tantrums when the therapist came.

And it is also very important to follow-up on the skills taught or else, he would lose it. I remember last month when I was down with official duties for about a week, I didn't have time to follow-up on what the therapist did. I did not emphasise on eye contact. He was at my sis' place most of the time where the maid was taking care of him and there was no emphasis there for eye contact also. I actually asked the maid to work on his pointing and she got excited every time he pointed at something and forgot about eye contact!

Then when I sit in with him for therapy the following week, his pointing improved but his eye contact was off!!! And to think that we had worked so hard for eye contact earlier on. So we had to start all over again and all the money I spent on the therapy sessions earlier literally went down the drain!!

Now that I have been working on his skills and spending time with him for the past two weeks, he has shown improvement. Better eye contact, pointing is very good and less jumping and stimming... But I have to start work soon and he will be on his own again... I can teach the maid but she lacks the skills and techniques. Furthermore, she has other chores to complete.

I am so afraid that all the things that we have worked so hard for will go down the drain again. Arggghhh!! I have been discussing this with hubby and we are trying to work something out. I really hope we find a solution soon. Consistency must be there. Follow-up must be there. Period.

On a more positive note, since I have been consistently letting him eat on his own since last week, he is somewhat enjoying it and his eating skills have improved too. Here is Rayyan eating dinner on his own. He is doing some spelling too while eating :)

Social Skills

When Rayyan was about 1 year old, we sent him for Gymboree classes. He participated in the different activities, sat quietly during circle time... No doubt, sometimes he was cranky and didn't want to do certain activities during his 'off' days but generally, the classes were pretty fun. But due to distance, we dropped him from Gymboree, a decision we regretted till now.

Rayyan having fun at one of the Gymboree classes back then..

When Rayyan was about 2+ years old, we went for a trial class at MyGym. It was a HARROWING experience... At first, he was excited when he saw the different obstacles.. he was climbing up the ladder, going down the slides, playing in the ball pool...

Then it was Circle Time and it was complete mayhem! He was trying to run away from the circle, tugging our hands and crying at the top of his lungs!! We coaxed him, even brought him to a corner, gave him his favourite toy but nothing worked.. He cried and cried! We didn't know what to do. He tugged us towards the door and as soon as we stepped out, he stopped crying!

We were totally vexed! And we knew that it was going to be the same every week. Actually, we didn't mind going through the sessions with Rayyan crying, we could take it but we just felt so guilty because his loud crying and tantrums disrupted the session. I was sure the other parents wouldn't be happy if it happened every week so we apologised to the kind lady in-charge and never stepped into the place again...

Till now, Rayyan seems 'traumatised' by Circle Time. But knowing the importance of social skills, I rounded up a good friend of mine, Sherie, and we started our own sessions two weeks ago. Sherie has two boys, Amirul who is about 3.5 years old and Saif, 2.5 years old. Saif is also under the red flag for autism and Sherie is as worried about Saif's social skills as I am about Rayyan's. So we decided to try and get the boys together and help them. Even though we are not trained to do these sessions, I am sure we can brush up on our skills. Furthermore, we can save up a lot because these sessions cost a bomb outside and the most important thing is, we understand the boys' conditions. So if Saif or Rayyan throws a big tantrum, we do not get embarrased and just coaxed the boys into joining the group.

First session was held at Sherie's place. When we came, we let the boys play together. As usual, Rayyan played alongside but never with them. Then we took out a mat and attempted to sit in a circle. And that was when Rayyan started to cry at the top of his lungs. The Daddy coaxed him and tried to make him sit but nothing worked. He just cried and cried!! Finally, we decided that maybe it was too soon to do this. Since the boys were not really familiar with each other, why not let them play on their own first and get used to each other.. So we did that and they were happily playing on their own again. Then Sherie's hubby tried to get Amirul and Rayyan to be involved in his drum-beating session. He managed to get Rayyan's attention and when asked to beat the drums together, Rayyan complied. We were pretty happy... No doubt we didn't get to do the circle time but well, that's a start...

Second session was held at my place. After the previous session, I decided not to do Circle Time yet. The most important thing is to get them to socialise, Circle Time can come later. So the kids played on the slide and went through a tunnel. Rayyan didn't seem happy. Maybe he didn't like the company, maybe he didn't like the fact that others were playing with his stuffs. He was pretty cranky but he did play with the slide and tunnel.

Then the kids played Play-Doh together. Rayyan was pretty excited, he started 'tearing' the Play-Doh. I was surprised because he usually squeeze and make different shapes with the Play-Doh but this time round, he just wanted to 'tear' them. Arrggh!! But I will handle that later. I was more anxious of the fact that the kids were playing on their own, no communication between them. That was when I made Rayyan pass things to Amirul and I gave him reinforcers to encourage him to do that. He did that a couple of times. Not too bad...

Next, we played with bubbles. This was the last activity. Again, Rayyan was pretty cranky. Didn't want to play with the bubbles but after a while, he warmed up and started chasing the bubbles. But again, no communication between them.

After going through two sessions, I feel that we must really think of activities that will make them play together. But on a more positive note, this is a good start. Let's hope Rayyan and Saif will show improvement as we go along.... U go boys!

HOPE

This is the old photo of this blog, I first chose this photo because to me, it just depicts... autism.. something that is just a part of Rayyan.

But I have decided to change it... The new photo at the top was captured while Rayyan was watching Hi-5 from my laptop. I love the hint of a smile, I love the sparkle in his eyes (never mind if it's from the laptop!), I love the way he locks his hands together.. To me it is simply a picture of HOPE... HOPE that he will pull through this... HOPE that he will get better... HOPE for a better future...

While we try various kinds of interventions, there is one that we can't rule out... DIVINE INTERVENTION... I for one believe in miracles...

Today is a pretty good day

In the morning, I picked Rayyan up from the childcare centre. His teacher said that he didn't throw a tantrum today, that must be because his favourite teacher was around. Before we left, he gave Mdm Teo a hug, waved goodbye and even gave her a 'flying kiss'. He held my hand and we walked together to the bus stop, with him carrying his Mickey bag.

We took the bus and I took him to Century Square. I was apprehensive at first because his Daddy wasn't around. Although he can walk on his own, he sometimes has his mood swings and would want to be carried all the time. And he is sure not light! But he behaved, held my hand, we took the escalator together and he did not run away on his own...

We had our favourite chicken rice. Then I brought him to Kiddy Palace and he looked excitedly at the toys. Nothing usually holds his attention long but at least he shows some interest. And the good thing is (or bad, depending on how you look at it), he never asked to buy anything. It's either he doesn't know how to, not interested or because he has a room full of toys.

He slept in the cab all the way back and at home, he slept in my arms. When he woke up, I let him watch tv for a while and then we had 2 hours of therapy. He complied and did the tasks given, although nearing to the end, he got bored and began to stare into space once in while.

We ate dinner together. He ate his rice spaghetti on his own. The spaghetti was all over his t-shirt but he enjoyed them. He ate like a one-year old but it's not his fault. All this time, we had been feeding him but now, we are more aware of the importance of letting him gain independence. So it really doesn't matter that I had to clean up after that, I'm proud of him.

He did throw a tantrum a while after that because I brought him out to throw rubbish and he thought that I was bringing him out for a walk or something. He was angry and disappointed but his tantrum was manageable. He had another therapy session with his Daddy after that and we brought him to the supermarket.

Now, he is sleeping soundly and indeed, today is a pretty good day. It feels so good to be able to be with him all the time, to watch him and guide him. To give him a kiss and a hug every now and then. To tell him I love him. I wish I can do this everyday...

Dream Holiday

Last Sunday, we sent one of our dear friends off at the airport.. The airport was jam-packed, everybody seemed to be going somewhere...

It's been a while since we (Hubby and I) travelled outside Singapore and Malaysia. The last time was years ago, just before I conceived Rayyan. I think it was a trip to Bangkok. I miss sunny Australia, exotic Bali, magnificent Europe, enchanting India.... After Rayyan was born, I became the over-anxious parent, afraid that he couldn't take the long journey, afraid that he would fall sick, etc, etc... Now that he is a toddler and pretty much ready to see the world, a couple of factors stopped us from leaving on the jetplane...

One of them is that Hubby doesn't have anymore leave because most went to bringing Rayyan to see the doctors, being around for the various therapy sessions, going for assessments, etc. Another reason is that after spending money on therapies, childcare centre, food, other miscellaneous, etc... we don't have much left. In fact, before the holidays, I already made up my mind not to go anywhere this holiday but concentrate on building his resources, reading books on autism, preparing time-table and menu for the new year, look for a suitable learning centre and simply to just spend quality time with him.

So it's ok that we don't get to travel now... Hopefully one day we will.. In fact, I have been thinking of this place I went for volunteer work back in 2003. It's Sikkim, India. It's just next to Nepal and the mountains there are truly gorgeous. Back then, after completing our mission there, we actually went trekking up the mountains but I didn't get to reach the peak because one of my friends got sick and I decided to accompany her down back to the village. But I remember that as I was going down, I told myself that one day, I am going up the mountains again, this time with my husband and children.

Well, I really hope that dream will come true one day. I hope I will have the opportunity to trek up the mountains with Hubby and Rayyan. We will go through the challenges together, help one another and finally at the peak, we will sit side by side and enjoy each other's company while watching the gorgeous sunset across the mountains, basking in nature's glory.... One day my dear boy, one day...

Parent-Teacher Dialogue

Yesterday was the first formal parent-teacher dialogue I had with the teachers from his childcare centre. Before I went, I was feeling kind of anxious and apprehensive. As a teacher, I am usually the one giving the feedback, informing parents of the academic results and behaviour of their children but today I am the one at the receiving end. What will the teachers say? Will they say that my boy is beyond hope? That they couldn't handle him? Or is he the 'bad one' in the class? The one who never fails to irritate the teachers and make teachers feel angry and frustrated? I know I was so full of pessimism but I just couldn't help it.

Before I went, I prepared a list of questions in my head... These were some of them..

How often does he throw a tantrum?

What makes him throw a tantrum?

Is he violent or has he hurt anybody?

Does he mix with the other kids?

Does he have a friend?

Does he jump and flap his hands in school?

As you can see, I am not concerned about his learning but rather, his behaviour.

So first I had a session with the teacher Rayyan is closest to, Mdm Teo. She takes care of the kids for the first half of the day and since Rayyan is there for half a day, he is usually taken care of by Mdm Teo. I must say that I am touched that she is so concerned about Rayyan. I can feel the pride when she spoke of Rayyan's improvements. She said that at first, she didn't know how to handle Rayyan because he would throw a tantrum every now and then and she didn't know what he wanted back then. But slowly as he grew closer to her, she began to understand him.

These are the improvements she sees in him (I have also included pics given by the centre)..

1) He doesn't cry anymore when he comes to the centre in the morning. Before, he would cry at the top of his lungs when he reach the centre and would lie down on the floor and kick his legs.

2) This I have mentioned before. He has learnt to eat by himself and can sit through his lunch. Before he refused to join the other kids at the table and would throw a huge tantrum when he was made to sit with them. Now, he can even go and wash his hands by himself before lunch!

3) He can now follow simple instructions given by Mdm Teo, like taking his shoes for outdoor activities or following and holding Mdm Teo's hands when Mdm Teo called out for him. Before, he would ignore her totally.

4) He can sit down and do some art and craft, like pasting small coloured pieces of paper under the instructions and guidance of Mdm Teo. Before, he would avoid all activities and go to the 'library corner' to read on his own.

Rayyan's art piece! Isn't it gorgeous??!

5) He doesn't throw a tantrum anymore when made to sit in small groups to do activities like playing with blocks or read books. He doesn't communicate with the other kids but at least, he doesn't throw a tantrum and walk away from them. Before, he didn't want to join anybody and just wanted to be alone.

These were Mdm Teo's concerns..

1) Until now, he doesn't want to mix with the other kids. So far, he has NEVER joined them at the playground. He will just go to the side or a corner and play on his own. I have mentioned this before but I didn't know that he has never even once, joined his friends. When the teachers actually tried to force him to join the others, he will throw a tantrum.

2) During lessons, he also doesn't want to join the others and doesn't want to sit quietly. He will wander off or go to his favourite library corner. Mdm Teo tried putting him by her side but he will only last less than five minutes there, then he will start wandering and do his own thing. Again, he will throw a tantrum if forced to join the others.

3) He is clingy.. He only wants those who are close to him to attend to him, like Mdm Teo and the other teacher, Ms Cynthia. When these teachers have to shower the other children and pass him over to the other teachers, he will cry. He doesn't want to follow any other teachers.

4) Mdm Teo is also concerned because he likes to play with water/liquids in a very unusual manner. Whenever he sees a pool of water/liquids, he will spread the water around using his fingers. He will do this with his mucus and saliva too.

I know that he will do this to water and his own mucus (we freak out everytime he does this) but I have never witnessed him doing this to his own saliva. Anyway, we have found out that his actions are due to his sensory impairment/needs and we are trying to address this behaviour.

Through Mdm Teo, I also found out that he doesn't really throw a tantrum in the centre... only when he is forced to join his friends or when the teachers shower the other kids. Rayyan is also not violent and has never hurt anybody (Thank God!). And he does jump and flap his arms when he is excited.

Anyway, I really thanked Mdm Teo for her patience and her love and concern for Rayyan truly touched me. She said that she is really fond of him now and Rayyan will even give her a hug and kiss her once in a while.

Next, I met Ms Cynthia. She takes care of Rayyan only once in a while so she is not that close to him. My meeting with her was less than 5 minutes and sadly, she did not mention anything positive. Apart from what Mdm Teo had already informed me, she added that Rayyan doesn't like to paint or do printing. He would walk away whenever there's a painting activity.

I have mixed feelings after the session. Part of me was glad that Rayyan has shown improvement but part of me was sad... and I guess the saddest part was when the teachers informed me that he doesn't want to mix with the other kids at all. I know that he doesn't talk but at least, I thought he would play with them. The image of him all alone, not wanting to be in the company of friends, not smiling or laughing along with them, really, really saddens me... I really hope that Rayyan will overcome this one day...

I must say that the session really opened my eyes and I've learnt two important things...

1) The importance of being more involved in Rayyan's school life. I felt really guilty for not being more involved in his school life. Because of work, I don't send or pick him up from the centre but I should have gotten regular feedback from the teachers and also, tell the teachers more about Rayyan's behaviour or his likes and dislikes. This way, the teachers would understand him and would be able to handle him better. Now that I think back, I realise that the reason that I wasn't really involved in his school life was not only because I was busy with work... It was also because I was afraid to hear the negativities from the teachers, I was afraid to hear all the bad things about my boy.... This will definitely have to change..

2) As a teacher, I realise even more now the importance of understanding and loving your students. The school counsellor has always informed the teachers that whenever they deal with difficult students, teachers should find out more about the students and try and find out what's bothering them. More often than not, students become defiant or rude because they have problems or something is bothering them. We teachers should find out the underlying reason and not lash out at them non-stop. Indeed, I can see the importance of understanding and loving the students. Like Mdm Teo, once she had understood Rayyan, she began to care for him and love him. And Rayyan, on the other hand, began to warm up to Mdm Teo because he knows that Mdm Teo cares for him.

Through this experience, I really hope I will be a better mum for my Rayyan and a better teacher for my students. I hope that the challenges that I face make me a stronger person....

Precious Time

When the social worker called us and told us to choose a centre for Rayyan's EIPIC (Early Intervention Programme for Infants and Children), we looked at the list and narrowed it down to 3 choices (based on distance).

AAS Autism Children's Centre (Simei)

Metta Preschool (Simei)

Spastic Children's Association of Singapore (Pasir Ris)

I asked around regarding the programmes and finally decided on AAS. It is simply because AAS incorporates ABA into their programmes (which is in line with what we are doing for him) and also because they are more focused on autism. The other centres have other children with different special needs. No doubt the waiting queue is long (9-12months) but I am willing to wait because I want the best for him. If I had chosen the other two centres, he would be enrolled this Jan 2010.

Anyway, I remember that when I informed the social worker of my choice, she wasn't too happy because she felt that I am short-changing Rayyan's future by delaying another year. She also added that she just wanted to make sure that I do not call her and complain later of the long wait. Well, that was when I got slightly pissed and told her that I went to KKH a year ago, if he was placed on the list then, he would have gotten a place now!!

Well, that's the problem... there's too little support given by the government where special needs are concerned... I remember that I went to a polyclinic to get a referral to KKH in Dec 08. I got an appointment to see a doctor at KKH in Mar 09 (3 months wait). At that point of time, I also called a private centre who does assessments and the doctor/psychiatrist there informed me that they will do the assessment but since Rayyan is still very young (just turned two), the assessment might not be conclusive and he might have to go through another assessment later. I decided to wait then because the assessments don't come cheap ($1500-$1800).

When I met the doctor at KKH in Mar 09, she informed me that while there are worrying signs, there are also positive signs and wanted me to put him in a school first. She asked us to 'wait and see' for another 6 months or so and gave me an appointment in Oct 09. I thought that ok, maybe she's right. Rayyan needs to be in a school setting. I can wait for another 6 months for his assessment.

So in 6 months time, we went to see her again... No changes in Rayyan and there are more worrying signs. I thought that we can finally get the assessment but you know what, it was just another review, his assessment will only be in May 2010!! Arrghhhh!! The only good thing is that they want him to be placed in EIPIC as soon as possible but since we chose AAS, that will be another long wait......

Wait, wait, wait... looking back, I should have followed my maternal instincts then (when I first realised that something was not right)..... and I should have gone for the private assessment.... and I should have gotten help for him then. It would have made a lot of difference to my boy...

But what's done is done, the important thing now is to learn from my mistakes. I shouldn't blame myself too much.. I didn't know much about autism then. I was afraid and was somewhat still in a denial mode.

So I don't want to waste anymore time now... which was why I got an ABA therapist for Rayyan. I am also doing home therapy with him on my own. Apart from that, I am also reading more about 'floortime' and just started doing 'floortime' with him. I am also finding out more about GFCF diet. We are trying out different GF products with Rayyan and I hope to come up with a menu soon. Eliminating gluten is not really much of a problem but the casein part is pretty much a headache because Rayyan loves his milk! But I hope to wean him off his milk soon and go on a full GFCF diet by Jan 2010.

And regarding EIPIC... While waiting for AAS, we decided to go for a non-govt aided centre for him. We have gone to SPD (Society for Physically Disabled) at Tampines which does EIPIC also and we liked the place and the people who will be working with Rayyan. They have offered us a place and if we accept the offer, Rayyan will be starting there in Jan 2010. We still have a few days to decide and if we don't find anything better and more feasible, that's where he is going...

So yes, I am trying to do what I can for my Rayyan. Indeed, many times, I feel that I am not doing enough for him. I have heard and read stories of children receiving 40 hours of professional therapy a week and going through different kinds of therapies too.. Well, I wish I can do that for Rayyan but I simply can't afford that. I am doing what I can within my means. We are taking baby steps but baby steps are better than no steps. Like they say, 'slowly but surely'.

'Time waits for no man' and it sure doesn't wait for my Rayyan. I have indeed learnt once again how precious time is.... so...

NO MORE 'WAIT AND SEE'!!!!

Looking into his education...

As the new year approaches, we are now looking into his education or rather, places that we can enrol him to build on his social and interaction skills. Currently, he is still going for half day child care but we will be pulling him out of the centre at the end of the year. He has been there for half a year and we don't think the place is beneficial for him. He doesn't enjoy it at all. No doubt, he doesn't cry anymore when we bring him there. I think he knows that even if he cries, he still has to go there. But we know that he hates going to the centre.

His Daddy is the one who brings him to the centre every morning so whenever I am at home in the morning (on Saturdays or during the hols) he doesn't want to follow his Daddy and will run away, something that he doesn't usually do because he adores his Daddy. Also, during weekends, when we are driving, he will usually cry when we are on the road leading to his childcare centre. He even memorises the route!

Actually we enrolled him there with the hope that he will mingle with the other kids and since the curriculum is not so rigid, it will be good for him. But I remember once my sister told me that when she went there to pick him up earlier than normal, the children were at the playground. All the kids were playing happily there and my sis couldn't spot him among them... And then my sis saw him... alone.. at the side of the playground, playing with leaves..... When my sis told me that, the image of him just tugged my heart. I felt like calling the teachers and scolding them for not encouraging him to play with the others, for letting him be like that but I decided not to make a big fuss.

I know that there are other kids there and the teachers need to look out for them. I guess that since Rayyan was not in any danger, the teachers let him be. That's the problem... as long as he is quiet and not in danger, the teachers let him be but really, that is not doing him any good.

The thing with child care centres is that their main priority is to teach the children independence but I don't think Rayyan is ready for that yet. But looking at the bright side, there is one thing that he learned there... to sit quietly and eat his lunch. My sis has spotted him several times eating with the other kids. The teachers said that initially, he would cry and wouldn't want to join the other children at the table but now he can sit quietly and concentrates on finishing his lunch. My sis even took a photo and I was so proud of him when I saw the photo!

Meanwhile... the search continues to find the suitable learning centre for him...

The Airport

The airport is one of Rayyan's favourite haunts. He loves running around the huge terminals and boy, he sure can run!! We definitely have a difficult time running after him because whenever he's there, he will get excited and he will run and run, without a care in the world, ignoring our repeated calls (another autism trait).

I remember last week, we were at T2, waiting for the skytrain to take us to T3. Our helper was with us and while we were busy reading something, he ran straight for the carriage heading to T1. My helper got a shock of her life because she was not fast enough to stop him and luckily the doors did not close on him or after him!

Anyway, we sometimes use the airport as our 'training ground'. We will let him roam at the terminals and since there's a huge running space and we do not have to worry about him getting lost as we have a good view of him, we will just take a leisurely walk and if he runs, we will call out for him and get him to come back to us. He is beginning to follow our instructions and as time goes by, I hope he will be more compliant. We also take the opportunity of the huge space to bond with him by racing with him or 'galloping' with him, something he loves to do.

Here's the Daddy galloping with him..

And last week, after the skytrain scare, we brought Rayyan to a little playground which was temporarily set up at T3. The little playground was packed with kids and I was pleasantly surprised that he wanted to play there. He climbed up the ladder and waited for his turn to go down the slide. No doubt, he did not communicate nor play with the other kids around him but at least he wanted to play there, something that he sometimes avoid at all costs.

So really, at the end of the day, nothing beats seeing the huge smile on your child's face or hearing his happy laughter :)

To give in or not to give in?

Yesterday, as usual, I did therapy with Rayyan. We always use animal figurines as reinforcers or rewards as he is 'obsessed' with animals. Bring him to a room full of toys and chances are, he will go to where the animals are. So since he loves them so much, we keep most of his animal figurines and only use them during therapy so that the reinforcers will be strong and he will be more motivated to do the tasks given. And usually, after the therapy, we will let him play with all the animals that he 'earned' as a reward.

So yesterday, while playing with the animals, he started to stim.... meaning, he jumped around while looking at the animals and flapped his arms. I started to observe him and Hubby kept telling him to stop, which he did not of coz.... Suddenly, I got frustrated and snapped! I got up, took the animals away, closed the box and kept the box! Rayyan wailed at the top of his lungs and threw a huge tantrum! I then went to his room and pretended to sleep. Outside, he cried and cried, throwing himself at Hubby and even hitting him! He was reprimanded of coz and he cried louder...

Even though I pretended to sleep, I was a total wreck inside.. I knew that I was wrong in a way because I did not give him any feedback regarding his behaviour, I just took the animals away but I don't know why, I was just consumed with this huge anger and frustration. Looking at my son stimming away, I felt like this huge monster called 'Autism' was swallowing him and he was going deeper and deeper into his own world, away from me. And I felt this strong need to bring him back, to get him back...

Rayyan then came to the room, still crying... He cried for a solid 30 mins or so... He cried till his voice was hoarse.. Still I pretended to sleep.. I knew that I couldn't give in. If I did, it will give him the message that crying works, that by crying, he can get what he wants. So I persevered. He was still crying but it got softer and softer and suddenly I heard him whimper like a broken puppy and that was when my tears started flowing.... My heart just broke into pieces when I heard him whimper like that.

And as soon as he stopped crying, I picked him up, held him tightly and brought him to the balcony. I sang for him and told him why I acted that way. He seemed angry with me but he hugged me tightly. If this is called 'tough love' then I really don't know how long I can stay tough, I really don't know how long I can stay strong for all this...