Anak Syurga

For those who don't understand Malay, "Anak Syurga" translates roughly to "Heaven Child".

I have never really referred to any of these kids as anak syurga, not even my son. But I do believe that God is great and just, and I don't even dare to meddle in the discussion whether or not these kids will go to heaven or to hell.

But this comment in one of the blogs owned by a parent, is really shallow and not well thought. My guess is that one of these kids had an encounter with Safuan's cat, and did something bad.

If Safuan had the time to watch a retarded (as he put it in his comment) kid tortured a kitten up to the effect of paralyzing it, why didn't Safuan (as an intelligent, non-retarded adult) take action and save the poor kitten? What makes Safuan think that the retarded kid knows what he or she is doing?

I don't know. I just think that Safuan should have just kept his smelly mouth shut, instead of making a fool out of himself.

In the end, anak syurga is just a term being used to refer to these kids, in a way to make the parents feel better about where their kids will end.

Some of these kids will never lead a normal life. They can't go to school, university, get work, get married, etc. so can't you just cut the parents some slack???

Talk about being selfish, huh?

- Abah

Sorry For Ignoring Your Comments

Hello there. As someone experienced in IT, I am embarrassed to tell you that I have forgotten to fill in the box below when setting up this blog. So, I did not know about the comments until I log into Blogger. My apologies.

Although there aren't many missed comments (maybe 1-2), they are valid comments sharing real matters. I still feel bad. So, going forward I will be receiving notifications for all your comments.

It doesn't mean that I will be responding immediately, as I would love to give back a thoughtful response. But at least they will not go unanswered for months!

Thanks so much for leaving them!

- Abah

The Long Road Ahead

Our son will be 5 this year. We have been contemplating whether or not to have another child (or more children for that matter) but we finally decided to try.

As with our son, it didn't take long for conception to happen. Mama is now pregnant, and as before she is experiencing pregnancy sickness. This time, it's even worse that there are times when I actually feel regret of impregnating her. It's not funny at all.

I should probably get a vasectomy.

A normal Dad with normal family might feel nothing when it comes to expecting a child. For them, they already have the experience. However, I am quite terrified. Friends in Facebook ask me why I am terrified but they can only try to understand my explanation.

Dear son has improved in being more considerate, independently creating artworks (paintings, Play-Doh modeling), eating using utensils, singing, humming, speaking, imagining, etc.

However he still has a lot to improve, and still requires a lot of attention especially since he hasn't been potty-trained and requires assistance to take a bath.

With Mama being unwell, I have to take on a lot of work and as an Aspie it's really heart-breaking to see Mama sick, and to push son away when he requires attention.

Due to the nature of my work, I can sometimes work from home although it is frowned upon by the leadership. During the day, I do what I can by squeezing time here and there to help out with house work. During the night, I still do what I can until son sleeps at around 1-2 AM, sometimes 3 AM.

Then I'll continue doing some of my work until I become too sleepy, and then wake up in the morning for another fresh but sleepy day.

The truth is when son is around he only requires simple attention like playing or listening to his story or explanation about what he sees. However when I am working in front of the computer it's really hard to focus and I end up ignoring him or simply responding with a nod.

It is heart-wrenching to do that.

I am unsure whether other parents feel the same way, or be able to still focus on work while responding to their children.

All I know is that I am trying my best to be a husband and father, and to provide as much as possible for the family I love so much.

- Abah

Sensory Hotspots

Post by Autistication.

Speech & Hearing Centre, Sunway Medical Centre

As advised by Dr. Juanita we made an appointment for a hearing test at Sunway Medical Centre since we are more familiar with the area (compared to Cheras).

The test was done at the Speech & Hearing Centre but I forgot to get the therapist's name. He was a young Indian male and he was very nice to our son. The most important thing is that he knows how to handle children well. Our son was happily following his instructions.

Centres like this has good tools to determine whether the child can hear the sounds being tested. By tools, I mean toys. During our session the therapist used marbles and instructed son to put in the marble into the structure if he hears the sound being played.

For children who can't respond I think they might have to plug in probes to look for brain activity. DO NOT take my word for this as I don't know. I only saw pictures of hearing tests that has a lot of wires to the child's head and I was really afraid they're going to do this to our son. Luckily, he is able to listen and respond.

The test was initiated with sounds playing on the speakers, but most of the tests afterwards were using headphones.

The good news? Our son's hearing is well and he passed all the tests.

If you need their service, please click on the link in the 2nd paragraph above.

- Abah

Child Specialist Visit at UKM Specialist Centre

It's been a while since I had the time to continue writing in this blog. Mainly because I had a new job, which is very challenging. Travel to work at 8.00AM and arrive back home at 9.00PM, sometimes 10.00PM. Enough about me.

We managed to secure the appointment with Prof Madya Dr. Raja Juanita Raja Lope at the UKM Specialist Centre and went there on the 26th of December 2012. Her specialty is Developmental Paediatrics.

The doctor is really nice, and we are very satisfied with the diagnosis session. She had a lot of tools among them are color coded cards, toy blocks to analyze the ability to follow instructions, and picture books to see the child's imagination. She also tested motor skills by asking son to do certain movements according to her instructions.

Before engaging our son, she collected as much information as possible from us especially in family history. Son didn't take long to get comfortable in the spacious consultation room.

The session lasted a bit more than 2 hours, and the final result is that our son does not have Asperger's and he only has some of the traits of autism. In other words, mild autism. So he was categorized under PDD-NOS.

Some developmental health professionals refer to PDD-NOS as “subthreshold autism." In other words, it’s the diagnosis they use for someone who has some but not all characteristics of autism or who has relatively mild symptoms. For instance, a person may have significant autism symptoms in one core area such as social deficits, but mild or no symptoms in another core area such as restricted, repetitive behaviors.

So we are advised to get him to therapies such as occupational therapies and speech therapy. We were also instructed to get a hearing test done.

He is also officially awarded the Orang Kelainan Upaya (OKU) status (Persons with different abilities) which will enable him to get certain benefits from the Government. We are applying for this status at JKM to be able to certify his needs and hopefully get some kind of priority for therapies and treatments when necessary.

The doctor provides us with the forms to be submitted. Officially, the main diagnosis is still Autism Spectrum Disorder. I have no official source to quote, but in 2013 Asperger's will not be categorized separately and will also be a part of ASD. The doctor also mentioned this.

Are we surprised? No we are not. But it's official. We now need to train ourselves to take care of our autistic child.

As for schooling, the doctor advises us to get him into a normal school. But we've tried and it's not possible right now due to his inability to listen to instructions and react properly to social cues. We are hoping that after therapies he will improve and he can go to school.

Asked about whether siblings will help him improve, the doctor said definitely but she also warned us now that out first child is autistic, there is an 8% probability that our next child will be autistic too.

Back then, we had to think. As the time of writing, we have decided to try for his brother or sister later this year when I'm all settled down with my job issues.

The biggest issues right now would be securing funds for the therapies, and actually getting the appointment for the therapies. They are in high demand and waiting lists are actually listed as months!

Cheers,
- Abah