Saturday, December 5, 2009

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...