And So The Story Begins

I don’t know for how many times and for how long more I’ll be keeping this entry as draft. Because I need to keep typing… editing… retyping and it’s going on because every time I try to continue… the day and time has passed. As well as another events have taken places changing the original story to the bit different one. I usually either interrupted in the middle of blogging or the time for blogging is up. I really hope I can publish this today. Because I have lots more things to say that should be in other entries. Right at this moment I’m feeling a bit blank on where should I start.
Some might wonder what I have been up to lately. A few already knew because I told them or they asked me. A few might know but choose to keep wondering, afraid to ask maybe. But I’m sure many have known indirectly through the social channels. Still, most people still doesn’t know for sure. Well, not that I care though. This is not the thing to be announced widely. Tiada keperluan untuk berbuat begitu. But I’m not hiding either. There’s nothing to hide for sure. That’s why I still think by blogging about it can be a good medium for me to pour out what I’m feeling rather than letting it bottling inside. Besides, this could be a good help for others who might need information and reference in the future because I myself lots of times found blogs as my savior when I was really in need. Lat but not least I hope… if it’s not much would educate other people about what I’m going to talk about.
Now… how’s the right way to start? I don’t want everything to get mixed up. So I think maybe I should follow the chronology a bit. This is all actually about my second son, Ahmad Izzul Ihsan. Ihsan Alhamdulillah was born normally, perfect and healthy. In fact he is still now. Although he is the second, yet he is the first baby in the house because his elder brother had long gone. So suffice to say that we parents, had the first child raising experience with Ihsan. We didn’t have experience before that. Hence we have to always be alert with his milestone by referring to the newsletters and other children of the same age. I dare to say that we actually doing a pretty a good job for not being ignorant. As of today, Ihsan is 2 years and 8 months old. We have witnessed and experienced a lot. And I believe there will be a lot more to see and there is an adventurous world waiting to together be explored with him. He as well as us have a lot more to learn. Everyday there will be an interesting surprises waiting 🙂
Ihsan was diagnosed as having mild ASD (Autism Spectrum Disorder) on Friday, 13th April 2012 by a psychologist at NASOM (National Autism Society Malaysia) Setapak. So it hasn’t even reached a months yet since we got the news that surely will turn our life 360 degree. Now we have a new direction and path of life to follow which is definitely not the the same yet not totally different from the previous one. Before I go further, let me rewind back to the much earlier circumstances. We believed Ihsan developed well just like any other baby since the day he was born. We kept monitoring his milestones and development. As time goes by, I realized Ihsan a bit delay in speech. But I kept waiting and doing whatever I thought I should do to encourage him to start talking. Alhamdulillah, slowly he is improving and his vocab is growing. But as he entered toddler hood, I started to feel that his speech is still a little bit behind. I searched for more info and started to worry. I discussed with hubby, families and we even got specialists opinion. We decided to wait and see again and in the meantime put more efforts on him to make him improve. We decided to send him to kindergarten to see how is he doing. We already decided once Ihsan passed 2 years and a half and if the problem still persist, we should raise the red flag.
But as time goes by, not much improvement that we could see. In fact through more information that I got, I noticed a few other things on Ihsan that I should be concern with. This time… I’m not only worried about speech delay, but also social interaction. I know something is going on with my son. I started to feel worry and hopeless for I felt like I didn’t know what else to do. I shared my concerned with a few friends. A few comforted me by saying perhaps Ihsan just one of the late starters. Unfortunately a few judged me as a mother who likes to worry unnecessarily, a mother who likes to push and doesn’t know how to enjoy and be grateful for each little progress that Ihsan made, a mother who is selfish and impatient, a mother who likes to focus on Ihsan’s incapability instead of his success and last but not least a mother who likes to talk just the negative things about Ihsan as if praying for that thing to happen (sebab apa yang seorang ibu tu cakap akan jadi doa untuk anaknya). Sigh. Well… kata2 yang cuba menyedapkan hati I cakap jangan risau maybe Ihsan lambat sket and the likes tu, I memang appreciate sgt. Kalau I pun mesti akan cakap kat kawan kata2 yang positif dan tak membimbangkan dia. Tapi kalau kata2 yang lebih kepada tuduhan like the last accusation tu is of course the most unacceptable. Tak pernah terlintas I nak doakan perkara buruk kat anak. In fact I mula risau pun sebab memang dah nampak masalah pada anak! Starting from that day, I chose to be more careful in choosing the person whom I could share my problems with. Hence, I started to turn to other moms who I thought could be of a help and Alhamdulillah they really show me some lights. Thanks to you know who you are. Now I’m glad that luckily I have been a very observant mother and I can act fast to help him. No slightest regret at all 🙂 
On early April, Ihsan was admitted to KPJ Kajang for 4 days and 3 nights because of diarrhea. He was so dehydrated because he refused to take any fluid and food. So we didn’t have choice except to get him on drip. During our stay, The general pediatrician, Dr. Asmunni handled Ihsan’s case. After a few rounds to the wards visiting Ihsan, on his third visit if I’m not mistaken he said that Ihsan might have the sign of mild Autism. I directly told him that I actually have that concern. Before this we thought he only has speech delay but we started to notice a few more signs. I informed him we decided to bring Ihsan for assessment some times soon. The Dr. told me that I can already go and don’t need to wait anymore. He suspected Ihsan having that condition because: 1) Ihsan although not always but most of the times still talking gibberish, 2) Ihsan rarely respond whenever the Dr. tried to talk to him, 3) He has very minimal focus and eye contact, 4) He seems being in his own world, 5) He is more interested to explore his world, like the environment instead of noticing the people around him, thus he seems a bit active 6) He rarely respond to his name, 7) He rarely obey simple instructions etc.
I immediately told hubby about the Dr. comment. After Ihsan was discharged I spent 1 week with hubby discussing on what should we do. I made an appointment with NASOM Setapak because the waiting line is usually not that long compared to other places. Alhamdulillah we just had to wait 1 week before our turn arrived. During the time right after Ihsan was discharged and towards the appointment day, I spent the 2 weeks times to do a lot of thinking. I was truly at the lowest point of my life and I was so vulnerable. I cried on and off day and night. I was miserable of course. The thing that kept boggling my mind were 1) My vision and hope for Ihsan’s future became blur and I didn’t know what to do because I’m not familiar with the situation, and 2) I’m so scared that I might not have the strongest on-going strength and patience to go through all this. With ‘Abid, I lost him and I was deeply distraught once but I could get back on my knees. But this time with Ihsan I don’t know how many times I have to fall on my knees and find the strength to get up again. Somehow, Alhamdulillah I managed to overcome my mental, emotional, and spiritual turbulence just within that 2 weeks time. A few days before the assessment day, I as if got the strength and calmness blown into me. I becoming more rational and composed. And Alhamdulillah eventually I feel so REDHA accepting the fact with open heart.
After all it’s not a fault for anyone receiving the most expecting and shocking news to feel bothered about it. As a normal human being I too needed to go on the stage of processing, adapting and finally accepting the fact. So when the assessment day arrived, we just went there with prepared mind. We arrived there in the morning at 8.30am. The whole process of assessing Ihsan took about more or less 3 hours. The psychologist just interviewed me with so many questions. I told her as much as I could. I even studied back on Ihsan’s developments since baby and brought along my notes on that day because I didn’t want to miss out anything important. The psychologist then went to play with Ihsan in the playing room while I was left with a few sets of questionnaires. Then I was asked to play with Ihsan while she observing us. Finally the time for result is arrived and she confirmed that Ihsan has mild ASD.  She found out that Ihsan main difficulties are in 1) Social-Communication Development, and 2) Speech and Language Development. The clinical impression as written by the psychologist, “Ahmad Izzul Ihsan exhibits characteristics that meet the criteria for a diagnosis of Autism Spectrum Disorder. He shows speech and language delayed. The speech is not usually used to communicate. He has poor eye contact. He rarely shows repetitive behavior but might engage with a toy for a period”.
Among other comments that she said when she played with Ihsan were, 1) She saw Ihsan lining up the cars although not obsessively but he was actually trying to line up the cars, 2) He doesn’t like to share, 3) He doesn’t really do cooperative play and symbolic play, 4) He just plays with one thing at a time until he feels boring and during that time he doesn’t care anymore about others, 5) He rarely responds to his name and acts deaf, 6) He rarely try to understand and obey to an instruction, 7) He rarely can accept the flow of things or how things work, thus feeling temper, 8) Even in the middle of doing things he interested with, he tends to suddenly lost into his own world, 9) He uses gesture when he wants something instead of trying to say it out etc. I asked her whether she thinks Ihsan has other problems like nerve and sensory problem, hyperactive and etc. She said that Ihsan is not hyperactive but because his focus is weak so that’s why he looked like a bit active because he has a lot of things in mind that he wants to do. She also said that she doesn’t think Ihsan has any other problem because Ihsan is still small and it’s common for kids his age still can’t do many things by his own. So Ihsan has lots more room to improve. Still at this age Ihsan already knew a lot of things. Even if he has nerve or sensory issue it could be very very mild that doesn’t really affects Ihsan’s life. Furthermore Ihsan doesn’t have obvious repetitive behavior. So the obvious thing now is Ihsan already delayed in speech. He is a bit behind his peer of the same age. But not really left behind, just a little bit.
Because of this, she said Ihsan ASD condition is mild. She suggested Ihsan for early intervention program and focus on social-communication and learning. So the most important thing for me to do for Ihsan is to start bringing Ihsan for speech therapy session. She believes if Ihsan can improve his speech, all other problems will eventually improve too. Because communication skill is very important that it interrelated to the developments of other skills. But this is depends to the parents efforts and the child himself. If given optimum help, Ihsan can be corrected and he can be just like any typical kid. Since Ihsan is still very young, it is much easier to correct him. After a few years if Ihsan progresses well and if he comes for a re-diagnosis, Ihsan might be announced typical and free of ASD (although actually ASD can’t be healed because the kid is already born like that, but it can be corrected). So that’s it. We listened and accepted the result at piece. Maybe because we already reminded ourselves to accept whatever the outcome would be. We kinda already knew how Ihsan condition was only that we just needed to be confirmed. So it was true. The result were the same as we expected although of course we were hoping a miracle to happen and the result would be totally better. Somehow, standing on reality made it easier for us to face the day. We went home right after hubby done with Jumaat prayer. Our focus since then was more on learning how to live with the fact and most importantly work out whatever is necessary for Ihsan benefit.
Alhamdulillah we parents and the whole families are accepting well and putting efforts together to understand and help Ihsan in all ways possible. I am so open about this and I don’t feel ashamed about it. I don’t look at my son as someone with disabilities. But I look at him as just a set of human being born a bit different from us. Yes… he is just a bit different. But since the world is running and conquered by mostly another set of human being called typical, thus made people like Ihsan called special. No matter how mild Ihsan is. His ASD could merely be 0.01% in him… still that made him special and no one can change the fact. Allah gave him that specialty. Thus we are chosen to take and carry this responsibility with full dedication. It’s not easy. But I don’t want this to be difficult to us. Allah knows best and there are reasons behind everything. Somehow on second thought, I think I should be grateful for this special gift to us. He is also our asset in the Hereafter, besides ‘Abid. I think that’s all for now. I will continue later in next entries to share more on what is Autism, ASD, how are we coping with the new fact, what are my thoughts, worries and hopes, what are Ihsan capabilities and his difficulties, as well as Ihsan specialties (ASD kids usually have own specialty that typical kids don’t usually have) and lots more. This blog is going to be my journal on Ihsan’s journey of life, my records, notes, reminder, references etc etc etc.
Last but not least. I need sorry the least. So please don’t feel sorry or whatever the like for us. I don’t need sympathy LOL! 😛 Although I admit it sometimes Ihsan does testing my sanity to the limit especially during communication breakdown that left me with either Ihsan’s temper tantrum or much worst Ihsan’s meltdown (because he is too frustrated with the situation). But some times he can be very adorable and angelic too. Just like other kids his age… banyak akal 😀 I am proud of my son because he is so clever and if he is typical he would be very smart 😀 But please… be understanding… be supportive… do pray for us. Pray for Ihsan goodness whenever you suddenly remember of him and feel like it 🙂 Thanks!

8 Replies to “And So The Story Begins”

  1. i’ll always pray for u dari jauh..take good care of yourself too Ina..don’t stressed out too much 🙂

  2. ina…all the best, eh aku dah deactivate fb, sementara jer, nak fokus study,papehal contact aku kt email worries, if u fall on your knees, we’ll catch u and make u sure u stand tall and proud:)

  3. May Allah give strength to you and hubby for Ihsan..

    Emm tapi ina macam nk tny la… delay speech tu cenggana ek dan mcmana Ihsan bile die masuk kindergarten.. sbb aku kkdg macam ada keraguan jugak bila tengok simptom2 Ihsan.. macam refuse to share (aku anggap mungkin sebab die takde adik or selama ni die duduk dgn bbsitter), minimal focus tu… pun mcm ada.. die cepat boring.. ada la here and there yang simptom mcm Ihsan. speech pulak mmg agak pelat.. but still aku macam refuse to see the autism simptom :p

  4. Yatie,
    Thanks Yatie. InsyaAllah will try to take good care of myself too. Yatie pun pregnant kan? Congrats kalau betul! 😀

    Tq Shu for always being a good listener. Laa yeke dh deactivate fb. Susah la nk instantly contact ko hihi. Ok study rajin2 ye 🙂

    Tq Aina. Ihsan kt skool xberkwn sgt dia prefer buat hal sndiri. Ihsan boleh berckp macam2 n byk vocab but dia xboleh nk guna utk communicate and thus bersocial. Dia xboleh bgtau dia lapar, sakit etc. He doesn’t know how to develop his own language. Language dia adalah apa yg dia selalu dgr, baca, dan yg diajar. He just copy and apply. To some kids even to mutter a word pun adalah susah. Autism ni ada mcm2 n each type vary from mild to severe. Each kid berbeza xde yg sama but behavior symptoms tu lbh krg lah for all kinds of autism. Sometimes certain kids mmg lambat or perangai dia begitu etc tp dia mmg xde autism pun. Certain kids plak yg mmg ada autism d symptoms too mild smpi kita xterlepas pandang. I suggest u not to be too worried but at d same time observe her constantly. If it happens that she needs help, you have to act fast. After all it’s not that bad kalau tau awal boleh corrected rather than much later lg susah nk tackle. To me I better be safe than sorry. After all it’s our kids yg suffer if we choose to ignore. Tp kalau check xde apa2 Alhamdulillah xrugi apa pun. Btw Arissa umur berapa? Dia mcm mana kt skool? Dia dah boleh cakap dan buat apa?

  5. kalau berdasarkan apa yang ina cakap tuh… mungkin tak kut. Sebab die blh express herself well.. can adapting the montessori style at school, but still early to tell..baru masuk 3 minggu sekolah. cuma teacher die cakap la bile blaja tu ada la die tak fokus sebab tak paham english ke, ke bosan blaja ker..still observing lagi nih..

    bab communicate tu yang confuse sket. klu bawak jalan2, asal nmpk budak baya die or tua dua tiga tahun, dibantainye marah budak tu. aku still tgh process kenapa die buat macam tuh. sharing tu mungkin sebab die takde adik lagi kut. tapi witness kejadian malam tadi, bile sepupu dia datang, memula je tak nak share lepas tu jadi macam show off toys die plak..mungkin tak kut. ntahla

    but thank you for the advice.. mmg kena monitor jugak nih.

  6. Aina,
    Mcm Ihsan dia kalau buat benda yg dia minat cthnya baca buku, puzzles etc dia mmg concentrate. Tp kalau benda dia xminat mmg sng hilang focus and attention. Sometimes kids mmg take time nk adapt with new environment and learn new things etc. InsyaAllah xde pape la tu. Based on ur comment aku pn rasa xde pape kot. Perangai budak2 umur mcm ni mmg slalu mcm tu kan. But later if u still have concern better seek for specialist advise. Sbb cthnya kids yg Asperger syndrome (also a type of autism) xde masalah communication. Kids yg PDD-NOS susah communicate tp sgt ramah berkwn. A few kids the signs can be seen much later. Ko rajin2la bwk dia berkwn n ajar dia benda2 dia xfamiliar lagi. Nnt okla tu 🙂

  7. Ina,
    semoga Allah berikan jalan pemudah utk kalian.besar pahala bg stp yg diuji,insyaAllah…

    fith sndr sehingga skrg masih byk monitor milestone anak2,mgkn nampak normal tang sini,but who knows ada yg tak kena tang sana raziqh,quite active jugak,so need lots of observation too.masih in process mengenali dia,sbb tu hantar school awal,nak share milestones dia with someone expert.hopefully everything is just fine.ihsan juga,hopefully just a very2 mild situation so that in no time he will be just like other kids too,insyaAllah.

    take care ina!

  8. Fith,
    Thanks Fith. Susah pun dugaan senang pun dugaan. InsyaAllah kalau pandai handle akan nampak banyak hikmahnya. Yg penting semoga ada kekuatan dan kesabaran selalu 🙂 InsyaAllah based on cerita2 Fith kat blog anak2 Fith okay je. Budak2 kan mcm2 kerenah sementara nak besar tu yang parents kadang pening and risau macam2 hihi. But it’s good to always observe them rather than be ignorant kan. Fith pun take care!

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