The Discovery...

I have promised in my previous post ("Autism... In My Family") that I will share my experiences we had with our twin boys who had been diagnosed with autism. In fact, I'll be more than happy to share. I don't see any point hiding or keeping them to myself anyway. I would love to hear from any parents who have dealt or are currently dealing with such issue with their child / children. I want to know... I want to learn... I want to help my children to be better...

Year 2009. The boys were almost 2 then. They were a pair of bubbly, cheerful, and active kids. Memang tidak pernah pun terlintas di dalam kepala bahawa the twins akan jadi seperti ini - menghidap  autisme. Never. Not a slightest idea. We've always visited their paedi regularly, as per the schedule required for vaccinations and routine check-ups since their birth. We never missed. Mereka pun tak pernah sakit teruk. Demam-deman biasa tu, ada lah. But they were never seriously ill.

One morning, I was at my OBGYN's office, waiting for my regular appointment. I was reading a magazine. Hubby was outside the office attending to calls on his mobile phone. As I was flipping through the pages, I came across an article on autism. A very short, one page article. If I remember it right, the title was "Autism and Its Symptoms". I was drawn to read it, I had no idea why. But I read it. ALL, word by word. My heart almost stopped. I had to read the article over and over again, just to be sure that I read it right. I waved to hubby, signalling him to come and sit next to me. He came, and I showed the article to him. I didn't say a word. He stared at it. (I supposed he was reading). Then he turned to me and looked me right in the eyes, and said, "Let's get them properly checked". I whispered, "I think they are", and nodded my head at the same time.

At the boys' next check-up, I asked the paedi if he was also of the same opinion about the boys. He didn't immediately say yes, nor was he denying it. He suggested that we bring the boys to see a child developmental specialist, Dr. Rajini, who was attached to another private hospital. He gave us a referral letter, but I left the letter in the drawer at home and only took it out months later.

Why did I do that, you asked? Firstly, it was not on purpose. I somehow left the letter in the drawer and had forgotten about it. When I did remember, both hubby and I were tight up with work. And when I did remember (again...), I had this chill down my spine thinking about all the possibilities of the diagnosis. That they might have it. Somehow one day in late October, I found the courage to call Dr. Rajini's office to fix an appointment. We met her in August 2010. By the time we met Dr. Rajini, we have already enrolled the boys into a kindy nearby our house. Now... Getting them to be accepted into a school (kindy) was another different story... I'll save that for next time.

So, back to our meeting with Dr. Rajini. She met the boys. She talked and played with them. Asked us all sorts of questions (which we didn't mind really, whatever that could help her to help us). After about one and a half hours with her, came the diagnosis. She confirmed that the boys within the austism spectrum disorder. Asyraff was diagnosed as 'moderate', and Aimar as 'mild'. Rasa nak tercabut nyawa. Bagi yang tidak mengalaminya mungkin tidak akan faham perasaan saya dan suami ketika itu. We were both speechless. I cried right in front of her. My worst nightmare came true, eventually...

She comforted us as best she could. She strongly recommended for the boys not to be institutionalised because their case were not severe. She gave a list of centres for us to explore to send the boys for their occupational and speech therapy. I was still crying. Then I asked her, "Are we too late?". She answered, "Let's not think about it - whether we're late or early or just in time. We just work towards getting them better..", and smiled. Well, her warm smile managed to calm me down a bit though... After finalising all the bills, we left Dr. Rajini's office with one aim in our minds - GET THEM BETTER... And since then we have never looked back. it. Until today. We are still working on it....

Salam AidilAdha (Happy Eid-ul Adha)

First and foremost, salam AidilAdha buat semua. Somehow AidilAdha this year feels slightly different than previous years for me. No idea why. The weather is different. The feel is different. Hampir every single aspects of my life rasa lain this year. I have been having this urge to wear hijab for months now. Well, not that I don't want to, but am scared. I'm scared because I don't know if I can live up to the expectation.

You see, to me, when one wears a hijab, full time that is, she has to be really sincere in wearing it. She has to be really sure about it. Personally to me, wearing a hijab is no funny matter. Saya sedia maklum bahawa memakai tudung /hijab adalah dituntut dalam Islam. Dan sebagai seorang 'convert' saya secara peribadi memandangkan serius tentang perkara ini. Memang saya teringin untuk bertudung tapi saya risau dengan pandangan orang terhadap saya. Dan saya risau... Saya risau niat saya itu, keinginan saya itu hanya sementara. Bagi saya, once you've decided to wear a hijab, it should be so until you 'pass' this life.

Many of my friends advised me to start with wearing a selendang (shawl) to work. I am happy that they are very positive about it. I like the idea. Tapi saya risau laa pulak, if I do that, people will say something else pulak! "Gaya Siti", they might say... *sigh* Kalau betul pun, salah ka? At least she wears one, no? Haaa... If I say that, I might 'invite' the comments from the so-called experts pulak later... Pening... Pening!

Anyway, putting the issue on hijab to the side for a while, other things that I would like to focus on more this year are: (1) My commitment to pray more;  (2) Concentrate as much as I can on the development of my children -- all the 3 of them!  (3) Find opportunities to start something on my own. Insyaallah, I hope to achieve these objectives as soon as possible...

Don't get me wrong though... I do love my job. I like what I'm doing now, the company I work at, the people I work with. They're all amazing people. I would love to stick around longer. But at the same time I have to think about my children, about their lives, their needs, especially my twin boys. I have to know and set what my priorities are. Climbing the corporate ladder is every woman's dream. In fact, I suppose it's everyone's dream... But there are times where we will have to make a choice -- to continue climbing the corporate ladder, or to focus on something else of equal importance. I am like that now. I am in that situation now. I am at that crossroad now... At times, I cry thinking about the choice I have to make. It is just so hard. The passion I have for my current work is so strong. But at the same time, my desire to work on my children's needs are also as strong.

A friend recently advised me to find something that I can do from home. She said that as parents, this is the time to spend as much time as we can with our kids -- see them grow right in front of our eyes, be their best friends, because she said, when they grow older, they'll need lesser of us... Her words struck me right in the heart... She has a valid point though... Time can never be turned back. When it is gone, it is gone... All we have after that are only memories... She's right. Absolutely right. Thank you, Salina W, for the reminder...   

I have very limited time now to make up my mind. Hubby gave me a year to decide. I will... I will decide. I will make the choice, and I shall pray to Allah to guide me through it...

To all Muslim friends and readers, salam AidilAdha from me. Happy Eid-ul Adha... To the non-Muslims, enjoy the long weekend! :)

Salam...

Autism is OKU (Handicapped/Disabled)?? Really??

I am feeling rather down today... So many issues are playing in my head. Ney mok pikir pasal skolah anak2, especially my twin boys. Ney mok mikir hal kerja gik...

Just last night, hubby mentioned to me about this school he went to check out during the day. He spoke to one of the teachers. He explained to them that my boys are autistic. They gave  a reason that most of their 'specialised' teachers are leaving. (I wonder why...). He went on telling me the whole conversation he had with the school about the boys. I was quiet. Not that I didn't hear what he said, but my heart was breaking inside. The sound of my heart breaking was louder than his words. I was speechless.

I am clueless as to how or where to send the boys for their primary education. We initially thought of enrolling them into a special class /education at a normal school. Problem is, I was told I need to get the boys registered as OKU (disabled/handicapped person) with the government first, then I can enroll them. I was like WHAT??? DISABLED??? They are not deaf, or mute, or cacat ka apa. Delayed in speech only! I cried when I heard that. They were only diagnosed autistic within the range moderately to mildly autistic. Not severely autistic. I would understand if they are severely affected but they are clearly NOT.

Since then, we've been scouting for various education institutions / schools to send them to. I just want them to able to grow like other children. I do not wish to institutionalise them, because I know it is not necessary. They can be guided. Thay can be helped. I need help. We... Need help. I am not ashamed to admit so. I love the boys. I love my children. They are... My HEART and SOUL. I live and die for them... 

I am clueless. As at this very moment, I don't know how or what to do next... I don't... :'(

Autism... In My Family (1)

I have been silent for quite a while now. Been really busy with work and matters of the  home. Have always wanted to jot down some of the updates and happenings around me but time clearly envy me… To catch a decent 40 winks is also hard some times. But I guess that is life, kan?

So, this time I wish to share about the one thing that has been in mine and hub's minds -- autism and our kids. Yes, autism. A.U.T.I.S.M. Cara nyebutnya, O-TEE-ZEM. Many of you may already know its meaning. Some may not. In fact, some of mine and hub's family members do not really understand what it is. When they hear the word 'autism', some have this picture in their minds -- the image of a mentally retarded person. Well, close, but not close and true enough.

Autism is a complex developmental disability that affects the way children communicate and relate to the world around them. (Chewahh… That's me trying to sound like an expert, when in fact it is just an excerpt I saw in one of the many books that I read! Haha..). I got that definition from a book "How to Help Your Autistic Spectrum Child", by Jackie Brealy and Beverly Davies. It is clearly shorter and much easier to understand compared to others that I have read.

Now… What is the deal with autism and my family? BIG deal. You see, both of my twin boys have been diagnosed with autism. Yes, my two wonderful charming princes -- Ryan Asyraff and Ryan Aimar -- are both autistic. Based on the scale the experts gave, Asyraff is moderate, Aimar is mild. So what, you may say… Well, to people who are not in the shoe of people like me who have a child or children diagnosed with autism, no big deal. But for people like me, parents who have a child or children diagnosed as one, BIG DEAL. Yes, it is. I will start by telling you the history of us and autism… NEXT… :) Stay tuned...

Actions vs. Words

"Actions speaks louder than words," they say... Well, very true indeed. It is proven, to me, again, for the gazillionth time today. Not that I don't believe the saying, I do! It's just that sometimes I choose to ignore it, especially when it involve some negativity, because I just hate negative feelings. Negative feelings pull me down, and I don't like being pulled down. But then again, sometimes you just can't get away from it. From having that bad feelings...

I am not naive, if that's what you're thinking.. No. I am NOT. It's just that sometimes I would rather choose (or at least try) to be nice to people, and not be judgemental. I do that because I would like for people to treat me like that too. But unfortunately, more often than not, people take me as being too nice, and that I can be easily taken for granted. Now, that crosses me! Being nice doesn't mean people can take us for granted. Being nice doesn't mean we are weak. No.

I have just discovered recently, that we can never trust no one. Sometimes people are just too 'kiasu'. You take them under your wings; but be careful, for you will never know that one day they can just change and stab you from behind. I just had that experience. I still couldn't believe that it happened. After all that I have done - the guidance I gave, the knowledge I shared, the skills I showed - I found out that later I had to put my guard up because things are not going as well as I thought it would be. That I can get burned if I go on do what I do - nurturing.

As a sister, I thought I was showing the way. As a mother, I thought I was sharing the experience. As a friend, I thought I was giving the right guide. I was wrong. I mean, I did the right thing but to the wrong crowd... How did I know about this? Well, the above phrase clearly states so. Plus, I have my trusted observers.

So, again, ACTIONS SPEAK LOUDER THAN WORDS. Therefore, be careful. Be mindful. And on top of all, be bold... Because when things like this happen, it can cut you deep and the last thing you will want to do is fall down and crumble. You will need that BOLDNESS, all that STRENGTH you can get to get back up again and fight back!

May God bless us all... Ameen. :)