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

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

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

Newspaper Article in Berita Harian, 30th October 2012 - Penghidap Sindrom Asperger berupaya cemerlang

An article in Berita Harian (Malay newspaper) on 30th October.

- Abah

Newspaper Article in Star 2, 24th October 2012

An inspiring newspaper article I read today. Talented Reese.

Good that the community is becoming aware of Asperger's syndrome.

This article can also be downloaded as PDF here: https://www.dropbox.com/s/thtdjjrnfvganay/The%20Star%20Article%2020121024.pdf

Sorry about the quality, but the article is readable.

- Abah

Asperger Diet

Children (and adults) with Asperger are very picky eaters.

I found a page discussing diets for ADHD kids, but might be useful for Asperger as well.

http://www.althealth.co.uk/help-and-advice/diets/asperger-syndrome/

Yesterday, we tried to limit his sugar intake from snacks and junk food. We only gave him around 2 cups of his favorite isotonic drink, 100PLUS. He has always refused to take plain water, and as worried parents (maybe a little bit dumb) we allowed him to drink the isotonic drink. We weren't very worried about sugar since the sugar content is much lower than soda.

His favorite snack of all time are chocolates, cheese slices and frankfurters. We need to cut down on the chocolate intake but cheese is actually good for him. We are also considering to cut down processed meats like franks and burgers.

His favorite meals are KFC whipped potato, spaghetti bolognese (with extra mushroom), mac & cheese, and chicken soup¹ with potato and carrots. All of them are home-cooked by Mama except for the whipped potato from KFC.

While we also read that we should try gluten-free food, it's very difficult for now.

So yesterday he ate approximately 2 servings of mac & cheese and 2 cups of 100PLUS. I also saw him sneak some chocolate balls into his mouth, but decided to take it easy as it's his first day.

He also asked for tea, but I made him a cup of chamomile with honey instead. He didn't like it and I ended up finishing the drink.

Oh yes, we also limited his TV time to 1 hour. I am usually very tired in the evenings² and we sometimes let him watch TV to kill time. So instead of watching TV, Mama printed some blank outlines of his favorite things like tractor, airplane, dump truck, and bus for him to color using pastel. I joined in to color the dump truck with him.

The Result

Although it has only been 1 day, we observed something different when he actually fell asleep at around 1.00 a.m. and was a lot more cooperative than the usual.

Will post updates.

- Abah

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¹ Malaysian chicken soup is actually chicken broth with additional spices.
² As an Aspie myself, I have trouble sleeping and even with 8 hours of sleep, I am still tired.

Why it is Important to Know

It is undoubtedly scary to learn that you are suffering from something that is different from the rest of the world, but it certainly does aleviate a lot stress and answers a lot of questions.

During the entire course of my life I have always wondered why I have have been different. After our son was born my wife and I were both stressed out by the level of energy he had. We also felt like we weren't good parents since we are not able to control our son, understand him, and be like everyone else.

We felt like we failed as parents.

Personally, Asperger has answered why I always felt different from the normal society:

• inability to accurately detect body language and facial expressions
• the way of thinking about social norms
• inability to correctly remember telephone numbers
• chaotic sleeping patterns
• obsession towards certain things (for me it's about data organization such as papers/files, computers, smart phones, etc.)
• elevated sense of concentration and detail when doing work (up to the level that progress is so slow and personal projects never finishes)
• unconventional ways of solving problems
• physical clumsiness
• feeling of anxiety in unfamiliar social settings
• not a good conversation starter
• likes to change how real words sound

As for our son:

• repeating words from the television
• repetitively moving his body such as spinning or other acrobatic positions
• physical clumsiness
• never idle
• intense concentration when doing things such as building his LEGO blocks, watching YouTube, playing with his other toys
• restlessness and stressed out at social gathering like weddings or parties
• misinterpretation of what people say to him
• chaotic sleeping patterns

The lists above are far from complete. They are from the top of my head at this moment.

It does feel as if we are blaming it all on Asperger syndrome, but at least we have a reason now and don't feel so stressed like before.

However, Asperger syndrome certainly is not an excuse to behave in different way than the normal society. Adults will be able to think and improve where they need to.

We may not be geniuses but most people Asperger syndrome function normally and live normally. It's just how we feel inside that makes us different.

- Abah

How It Began

This is a summary of events that leads to the discovery of Asperger syndrome and amblyopia, so not all of the symptoms are related.

Our Son will be four in December 2012. For the past year or so he has been suffering from regular nose bleeds.

Although family and friends said that it's normal, being the paranoid parents we are we set up an appointment with an ENT specialist.

Even our pediatrician said that there is nothing an ENT specialist can do for nose bleeding problems.

The nose bleed was normal, caused by dryness of the nose and damaged capillary. However, the ENT noticed something different with his eyes. The eyes are not moving normally and he suggested that we visit an ophthalmologist (eye specialist) to have a checkup.

So we did.

Our son was diagnosed with amblyopia (lazy eye) and the vision in his right eye is terrible. He will be needing spectacles and eye patch therapy. We were thankful to learn that eye development stops at 8 and we can still try therapy to help his eye develop normally and achieve perfect vision.

We also feel appalled that there are actually mandatory eye checkups that are done in developed countries but not in Malaysia!

On Thursday we had the final eye checkup and the optometrist and eye doctor issued a prescription for spectacles.

They also provided a referral letter to see an orthoptists.

During checkup, the optometrist noticed that he kept repeating what she said so she also advises us to meet with a child psychiatrist as that's a symptom of Asperger syndrome.

Back home we did some research and everything that has ever happened makes sense now. We even did some online tests and quizzes and we are likely to be Aspies ourselves. Reading through a lot of materials from the Internet, we are convinced that our son is Aspie.

We are currently trying to get an appointment with the best doctor we can get, to get a real diagnosis and advice. However, from what we heard, waiting time is very long because there aren't many specialist here in Malaysia. We'll see who we can find.

This is our journey and it is going to be interesting. It's not going to be easy but we will go through this as a family.

- Abah