We Are Looking For A New Country To Call Home

After learning that #1 is autistic, I have been actively looking for support within the country. It is really difficult to get affordable therapies in the country, and the government is treating autism as another disability.

Each and every disability has its own limits, different ways to deal with it, and different kinds of education requirements. What is the use of mixing every kind of children marked as "OKU" (person with disabilities) in one class? It's catastrophic and the teacher can't handle them especially teachers who were never given intensive training!

Teachers try hard to make it work, but some of them were only given 3 days training? What's up with that?

In the end, one teacher has to handle 7-10 children and spent the time mopping the floor or bringing the children to the toilet in turn. It's just insane, I don't know what the people in the ministry is doing.

We have made a few acquaintances along the way, and we have actual people who are currently living in the UK and in the Netherlands telling us how these special needs kids are handled in those country. I pay my tax at an effective rate of 20% here but I receive zero benefit from it. My money is used to buy expensive cars for the Road Transport Department, and to make the politicians fatter.

I am willing to pay 35%-45% in the Netherlands if I can receive all the help I can from the Government.

Also, even if I can afford to pay for the best therapies in Malaysia, the opportunity for inclusive classes will be very minimal.

In the UK:

A friend of mine who also possess autistic #1 is moving to Nottingham this month. I am so happy for them, and at the same time my wish to move away is growing stronger. More than ever before.

I am also trying to see whether I can go to further my studies and work from there, since I work remotely anyway. I can work from anywhere.

Yesterday, a person who is very active in the autism community (and an autism parent too) who I respect so much, happened to post this status on Facebook.

"Interview semalam amat menyeramkan. Bikin saya berfikir panjang tentang pendidikan di negara kita dan juga kemenjadian guru."

Means, "Yesterday's interview was scary. It made me think long about education in our country and also teacherhood".

One of her current responsibility is interviewing teachers for a new project.

Coming from her, it was like a huge confirmation to what I have been feeling for the last few years. We need to get out of this country. This country can't provide us what we need.

Hey, before you start typing that comment I just want you to know that I love this incredibly beautiful land called Malaysia. I hate the administration, the defunct royalty, and the education system. I don't have any hope of it becoming any better soon and time is running out for my son.

So, anyone in UK or Netherlands need an experienced Linux Engineer or a research assistant?

- Abah

Jumper Cable

We had a follow up appointment with the immunologist at Gleneagles medical center in KL on Thursday. For #2.

Foreseeing that there will no vacant car park at the parking building, I drop Mama and the kids at the clinical building lobby and parked the car.

The appointment went on as usual, and we are to return in a month.

Since there is no easy way for me to get the car back to the lobby we had to walk to the car in the hot sun. I should've brought along an umbrella.

#1 was insisting to go into the pharmacy where there are junk food, but I said no and he was sulking all the way to the car park. I felt terrible and frustrated as usual as he doesn't understand that we need to go quickly.

The car park payment machine did not accept my bank notes, so I had to go to the counter which was fortunately located just next to the machine.

All of a sudden, an old man with white hair greeted me and said, "Dik, saya ada masalah nak mintak tolong. Kereta tak boleh start, jumper cable ada". Translated, that means, "Bro, I have a problem and I need your help. I can't get my car to start and I have jumper cables".

I was already in a frustrated and stressed situation because

1. It was scorching hot
2. #1 is sulking and refused to hold my hand to the car (it's dangerous and he is oblivious to danger, remember?) 
3. #2 has just recovered from his terrible eczema and infection so it's far from good being held so long in the hot sun

It was really amazing (annoying?) since I was already wearing my stressed and angry face before he even said anything to me. Most probably because he saw that I am Malay. I've seen so many other people passed by before that. Well, at least that's what I think since it's really hard for me to look around while trying to get #1 to cooperate and let me lead him to walk safely.

I looked at Mama and she said, "We're already running late". That's it and I hope the "bro" get it. I didn't even say a word.

The thing is if I was alone, I would have helped. The heat doesn't really bother me that much. I was hungry because I didn't have breakfast and hadn't had lunch yet at almost 4pm, but I would still have helped him. It's my family that I care so much about, I don't want them to starve while waiting for me to help someone I don't know.

I am not sure why but I kept on thinking that the "bro" can't see, or just don't care that I have two little boys in the scorching heat, coming out from a hospital? Can't he start his question asking whether we are in a hurry.

Mama's theory is that the bro never really had any experience with kids, like most fathers of the old times where the mother handles everything.

I don't know.

Just don't judge me. I had to work late at night, wake up hungry and do stuff for my kids. That's just who I am. Also I think I don't have to explain my difficulties to someone random on the street, just because I can't help them.

Come to think of it every time my car battery dies I just called auto assist and they send me a new battery. I have a few close friends living nearby, just that I don't want to trouble them. That doesn't mean that I wouldn't help if they ask. That's just me.

Next visit, I think I will pick up the car myself and drive towards the main entrance to pick up the family at the lobby. That's a good plan.

- Abah

God Doesn't Give You More Than You Can Handle!

The title of this post.

I just read an article from Autism Daddy written in June 2011, and he have just re-shared it on Facebook.

God doesn't give more than you can handle!

I have heard this oh so many times. As a Muslim, I have to believe in this statement and be peace with it.

Yes, I really want to believe in it although I am not sure whether it's entirely true especially seeing so many daddies run away after they had a child with autism. Leaving the mother to take care of the child on her own. It is heartless. Half of the genetic code comes from you, jerk!

In a playground earlier today, I overheard an elderly man talking about something but I captured a phrase quite clearly, "we're human too", while puffing a kretek cigarette at the playground 3-meters from children playing there. I hate people who does this.

As humans, we sometimes yell to #1. Especially me.

We realize we're humans. Reading about it and hearing about it from other people that they sometimes yell to their autistic kid somehow makes it feel better, just for a while.

Why, because we know sometimes he can't help doing he does. We know he doesn't understand the basic concepts of life. We know he doesn't understand action and consequences. We know he doesn't understand why what he is doing annoys us, or what actually annoys us.

Because #1 is not severe, we forget all the time that he is autistic and as parents we expect him to be better. We forget, son. Not that we don't love you. We're just human. We're sorry.

The guilt sometimes consumes me. I feel guilty yelling, I feel guilty taking a break by watching movies with your mom, I feel guilty not being able to respond to you while I am working at home and you have no clue what I am doing.

We aren't superhuman and we aren't perfect. What we are doing is try to take care of you and provide the best for you as much as we can.

Do I know why God gives this to us to handle? We don't. All we know that God always has God's own reasons...

- Abah

International Seminar on Autism 2014

I attended the seminar that was held in April for two days. The seminar's main objective was to raise awareness to autism, with the slogan "autism is not a tragedy, ignorance is"

It was an effort by the prime minister's wife who is also in charge of the Permata project. Being international there are participants from other countries as well as delegates from First Ladies who are wives of presidents and prime ministers. 

It was a commendable effort. However as a parent I don't feel that the event reached its main objective.

Take the example of an autistic child asked to leave the exhibition area because he was making noises. Mind that he was not in the seminar hall. Security was not aware of autism. Awareness was not achieved.

The best action was to let him be, so that people who has never know what autism is can experience and see with their own eyes, what autism is all about. Of course, each child would be different but having a real life experience is very beneficial.

For parents, most information are still vague and are the things that we are already aware of. It's even more depressing that most of the therapies and facilities discussed are not even available in Malaysia and I doubt they will be implemented anytime soon. Our kids are running out of time as we can't put them on stasis until those facilities are available in this country.

For rehabilitation centers and businesses, it's actually a good place for them to promote their service. A woman from a center actually talked to much, telling what her center offered, during the question and answer session. It's sad and selfish of her to rant about her center.

The sessions provided are mostly studies by academicians and parents are still left without better options.

What next?

On the positive side, we saw a school headmaster who came to learn more as a section for special needs has been placed in her school and she was extremely worried that teachers have not been given ample training.

Permata Kurnia, which is the autism arm of the Permata project will only serve kids in a certain age range... it looks like another money magnet to suck in our tax ringgits.

I have no idea what the government is doing, but it's not enough.

- Abah

Look for Second Opinion

We have been waiting and waiting for appointments with the orthoptist and eye specialist but they are very vague in providing us the next steps. It is as if they are not sure themselves on what to do next. They kept on mentioning corrective surgery.

It has been more than a year and the last time we saw the orthoptist the improvement was negligible and it was suggested that we extend the patch therapy to 5 hours a day.

In a way, we felt really confused as to what to do next or who to see next as it was all very vague.

Long story short, when #2 was born we had his eyes checked and the doctor saw that #1 was wearing spectacles. He introduced us to an excellent consultant optometrist who have excellent experience not only with eyes but with autism.

#2's eyes are good.

We continued to see the optometrist in Subang Jaya progressively and continued the patching therapy while forcing #1 to do eye exercises on paper. At first finding letters with bigger font size and gradually making them smaller from session to session.

During the first session we had to order a new pair of spectacles. The 2 or 3 sessions after that were free.

At the last session we had in July the optometrist confirmed that he no longer needs his patching therapy. Alhamdulillah.

Now, his eyes are fine in the sense that they are working together. He still is long sighted and has to wear his spectacles but it's improving. Next month we'll have another session with the optometrist and it's time for new spectacles.

In the meantime we still force him to look for specific numbers in a piece of paper. He hates the exercise... but thankfully Mama is trying hard to make him do it!

I am not sure how far we would have progressed if we waited for the original eye specialist and orthoptist. He might even have to go to surgery in the end...

As for the optometrist, I am not sure how she accepts her patients (since she work by appointment) but if you need to contact her please ask me via our email in the contact page. I value people's privacy. Hers and yours. I have, however included the clinic's phone number in Doctors/Specialist page.

As a conclusion, we learned that it is best to get second or third opinions especially if the office you're visiting looks like Dixon Hill's office. Go ahead, look it up :-)

- Abah

Therapies at Sunway Medical Centre

I saw this post in draft mode, dated September 2013 so I decided to finish it.

I have just noticed that after last mentioning about the Speech & Hearing Centre in this post I have never actually provided more information or review about their services

Speech Therapy

ST is professionally executed, and the therapist is good at providing exercises and handling a child in the sessions.

However, the therapist who was assigned to us was quite young and is not patient enough to handle an autistic child. The therapist would be angry if our son started to lose his interest or begin to do something else.

As parents, we know this isn't healthy and that's not how it's supposed to be.

Occupational Therapy

OT on the other hand is excellent and to our satisfaction. This is probably because OT is usually related to some kind of disability, not only speech trouble.

Conclusion

When choosing a speech therapist, or if you're in a medical center, look for/ask for someone who is experienced in handling similar cases. Like for our case, we should have asked for someone who have experience in handling autistic children and is very patient.

Because we paid for packages, we ended up forfeiting a few sessions because we felt that the speech therapist is not helping. I can't seem to remember the total cost for each package, and I have lost my organizational skills so I am unsure where the receipts are. If I find them I will update.

- Abah

There Are Four of Us Now

It's been a while. I just do not have the time to write, because of my busy life. Trying to be on top of everything is very difficult.

So, there are four of us now. Our latest family member is a healthy boy, born during the first quarter of 2014. It is not supposed to be easy, and it really isn't easy.

Now that we have more members, it's time distinguish the boys. Let's call our first son who is autistic, #1 and our newborn, #2.

We consider ourselves very very very lucky that #1 is a loving person by nature. He loves his little brother so much, and at all times are trying to play with him (even when he's not supposed to). After reading a lot of horror stories of how autistic children treat their siblings, I was very worried.

Yes, #1 was asking for a little brother but I assumed that he can never guess or imagine what it would be like with all the attention being taken away from him.

But Mama and Abah are lucky.

#1 is, however, not very lucky. He got a little brother but as expected we can't keep up with him as well as we could before. We have less time to spend with him. He voiced it once in a while, but I am thankful that he does not show any jealousy or hostile attitude towards his little brother.

The guilt is, however, hard to ignore.

We are trying our best son #1, and we love you both oh so much.

- Abah

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

My Aspergers Child: The Extraordinary Demands Placed On Parents Raisin...

My Aspergers Child: The Extraordinary Demands Placed On Parents Raisin...: Moms and dads of kids with Asperger’s Syndrome (AS) and High-Functioning Autism (HFA) play multiple roles. Often, they are the first adul...

This is a very good article. It is a summary of how I currently feel. It's all normal but it's really hard.

- Abah

Our Patches From Patch Pizazz Has Arrived

We received a surprise in the mail on Saturday, when we were just about to go out to buy birthday presents for a birthday party on Sunday. The eye patches that we ordered has arrived.

When I looked at the declaration sticker I was amused when I saw "eye patch and confectionary", but it's true; they were nice enough to include lollipops inside. It worked to provide a little distraction. As usual there was resistance from our dear son.

We tried the one with the "racing car" design first. The material is soft and comfortable, and it fit perfectly on the spectacles. The leather material inside is black so it should cut off a lot of light and prevent peeking. This, is another reason for resistance as it's very hard to see with the lazy eye.

Being an Aspie, son has always been hard to try on new things but after some time he'll comply. We hope he'll like these better since the patches with adhesive does prove bad to his skin.

- Abah

My Aspergers Child: Preparing Family Members for Your Aspergers Child'...

My Aspergers Child: Preparing Family Members for Your Aspergers Child'...: The following is a letter (or email) that you can send to relatives and hosts of holiday gatherings who might need a crash course in what t...

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I think this is a great letter to those who are willing to learn, understand, and accept.

- Abah

More on Eye Patches

So the eye patches with adhesive didn't work so great after all. They irritate the skin, and are uncomfortable. The frustration from not being able to see clearly with the lazy eye is already bad enough.

Son has been very cooperative after some reassuring from us, but he does expresses his frustration a lot.

So Mama found this online shop in New Zealand that sells the nice patches that can be attached to the spectacles. They look comfortable. We ordered 2 pieces and have yet to receive them. Hopefully soon. Malaysian Customs can be a pain.

- Abah

Emotional Mastery for Adults with Aspergers - Practical Techniques to work through anger, anxiety and depression

This book in free on Amazon (Kindle Edition) for a couple of days. Although the link below is a referral link, I doubt I will get anything from the purchase while it's free.

 

- Abah

Eye Patch Therapy

We picked up son's spectacles on Saturday, and he has been wearing them during waking hours. There were minimal resistance, and we were pleased.

It was time to start his eye patch therapy. We started on Sunday, without initial resistance. The prescription is set to a maximum of 3 hours per day. However due to the hot and moist climate, his eyes became itchy and watery so at most we get so far is 1.5 hours.

There were a lot of frustration too, since he can't really see very well with his right eye. He kept on saying that he can't see, and cries which made it worst since the tears will disrupt the good eye under the patch.

The spectacles was pretty much an attempt to correct his right eye's vision and the prescribed power was +200, a lot less than the tested average of +500.

So we tried to calm him down and offer him rewards if he manages to wear the patch as long as he can.

In less than 2 weeks we should be seeing the ophthalmologist again to check on his progress.

I recently found an article in the Internet: Amblyopia treatment – Eye patching alone is no longer the standard of care, which made we wonder whether a different approach could be made or a different kind of therapy could be done.

"While the research shows that a child’s visual brain will show improvement in their amblyopic eye sight with a patching regimen, this “old school” approach (when used alone) can be very difficult and disruptive for the developing child to handle. It creates visual disorientation and confusion in spatial judgements. This in turn creates frustration and often emotional upset in the patient."

I have to agree with the quote above, about the frustration and emotional upset.

"Therefore today’s “best practices” approach for the treatment of amblyopia involves a combination of monocular and binocular training of the visual brain through office-based vision therapy. This is done with a vision therapist under the direct supervision of a Doctor of Optometry along with prescribed home-oriented visual activities to complement the weekly or bi-weekly in-office procedures."

Is there anyone here that can help us and provide a second opinion?

- Abah

My Aspergers Child: Reducing Hostility in the Aspergers Child

My Aspergers Child: Reducing Hostility in the Aspergers Child: Hostility for many kids and teens with Aspergers or High-Functioning Autism stems from the difficulty they have in communicating their need...