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