Danial, Primary school & Autism~ When in a state of confusion, who u gonna call??

Rashitah Rahmat was my classmate in STF back in 1981-1985. Kulit hitam manis and hair touched her shoulder, Shitot was one of the brightest girls in our class;always the first in class for all exams as far as i remembered, at least from form 1 till form 3 (kan shitot???). It is really a small world because though my path and Shitot's never cross after we left school in 1985, my husband knew Shitot and her husband when all of them studied in the US!

Apart from being classmates during our secondary school years, another thing me and Shitot shared in common is that we both have an autistic son. Since, recently, my concern on Danial's future primary school deepens, i could think of noone else to turn to for advise....of course it would be none other than my dear old friend...Shitot.

Here is my recent conversation with her via emails...

Me:

I nak tanya ur opinion la. My son danial kan mild autism. Most of his autistic behavior dah ilang.But he is still delayed in speech. He has another year at kindergarten. I tak yakin die can cope with the public school yang ramai2 tu. Tp nak masukkan kat kelas pendidikan khas kat skola tu cam die akan bercampur dgn bdk2 yang lagi teruk developmental problemnye. I takut if i joinkan die dlm kelas tu, die regress pulak instead of progressing. What say you?

Rashitah rahmat..
put him in the normal stream. my son tu kena assess by the PPD officers pasal I want them to see how he is - he does not qualify to be in the special class pasal borderline case. too normal to be in special class but not normal enough to be in the normal stream. he will not improve in the special class. let him try that first. he can still be transferred to special class later kalau you risau sangat but it is not reversible once you place him in the special class. you kan cikgu jugak - why worry too much. have faith in him.

Me:
not that i dont have faith in him..i takut sgt die kena buli and bdk2 ejek die.. i am sooo afraid he cannot defend himself...and in the end, die akan depress..

Rashitah rahmat:

we need to go thru this episode...my son pernah balik sekolah dgn baju dia ada kesan tapak kasut budak mana entah. i pernah witness budak tendang dia. pasal kena ejek tu nak cakap macamana lagi pasal he is different - kids are kids. my daughter used to get very upset pasal org usik adik dia plus sometimes dia rasa malu ada adik mcm tu. most parents in that school know me. ada yg brand me as mak yg tak reti jaga anak pasal they all don't understand him at all. i don't bother to explain myself to any of them. teachers pun susah - ada yg concerned, ada yg tak bother at all. we cannot shelter him or protect him all the time. he needs to know and go through the basic things in life. i don't think i am being too harsh on him by letting him go through all that. i don't set high expectations on him - after what he has gone through, i think it is a miracle that he survives five years of school so far. he is not doing well at school but at the autistic center - he is one of the "good" boys they have ever had. he was invited twice to present flowers to the queen. I once saw him on the stage in USM where he was presented as a subject of the seminar. he was in concerts in two hotels so far - invitations from companies. at least i rasa sejuk jugak - merasa jugak anak i ni naik stage and perform for a crowd. i have given talk to medical students on raising a special child. i have received calls from parents in KL to Perlis for advice on raising special children. entah sapa yg forwardkan number i but itulah kelebihan ada anak mcm ni. sometimes i just wish that he dies first so i tak rasa risau - sapa nak jaga dia bila i mati nanti....give him a chance to grow up the normal way. he may surprise you. one thing at a time.

Hai...pening kepala rasanya where to send Danial for his primary school education in 2010. Some of you might wonder...alahai, lama lagi. But not to me. I am not a last minute person and i do not like surprises be it pleasant or not. I always plan ahead of whatever i want to do. I started to look around for a suitable kindergarten for my eldest Aisyah when she was barely 2 years old! And now Danial...

One thing for sure, as of now, i plan to put Danial in the normal stream. And i guess, Danial is about the same level as Shitot's son at the time of enrolling primary school - borderline case. too normal to be in special class but not normal enough to be in the normal stream. However, i plan to enrol Danial in a private school of normal stream around Shah Alam that has a smaller number of children in a class. Also, Danial will still continue his speech therapy with his current therapist. To help him cope with his primary school work, i might approach one teacher in Ira's school who happens to be a trained teacher for special kids. What else ya? I can't think of anything else right now but i have faith that Allah will always be with me and show me the way for Danial's future. At the moment, my doa is Allah will show me or give me guidance on which school would be the most suitable for my son Danial.

INTRODUCING THE STAR OF THIS BLOG ~ AHMAD DANIAL AHMAD KUSHAIRI

BABY DANIAL BEFORE A YEAR OLD...

DANIAL SLIGHTLY ABOVE 2 YEARS OLD...

Nov 2007~Danial performing onstage at the year end concert!!

Danial's most recent pic..siap bole posing lagi and now mmg dah tak de problem with eye contact...

Danial buat naughty kat rumah orang masa raya 2008...gang up with his cousins (tremendous improvement on social and play skills)

MANJA IBU....DANIAL...

amboi...dah ok with attention span, tak leh lak amek gamba betol betol ea....

DANIAL's WALL OF FAME...

A month after kindergarten, Feb 2006

At this time, Danial's teacher still had difficulty in controlling his hyperactivity. He refused to hold his color pencil properly and color the picture within the boundary.

3 months after kindergarten

Danial forced me to draw shapes of a rectangle, a circle and a triangle over and over again...but refused to do it himself or let me hold his hand to guide him do it. This prolonged for about 2 weeks. And he would observe me very very closely to see how i did it. However, one day, he decided to pick up a pencil and drew these shapes on his own!

When i saw Danial drew the shapes, i knew Danial's cognitive ability is good. He could copy and remembered how it was done.

My observation: Memory was excellent!

Danial and me did this as a practice based on his occupational therapy's session. This exercise was meant to increase Danial's attention span and reduce his sensitivity towards touch. You see, most autistic kids are very sensitive either to loud sound or rough surface or sticky surface...At this time, Danial was still not comfortable with the glue all sticky and messy on his fingers.

The artworks below were meant to aim for the same purpose...the texture of water colors...the rough skin of the lady's finger (bendi).

I helped Danial with the butterfly. I had to hold his hand and guided him to color within the shape of the butterfly. He enjoyed this activity!
6 months after kindergarten

Notice that by now, after six months of kindergarten, Danial's attention span increased. He can now color the pictures within the boundary and could hold his pencil color properly.

DANIAL TODAY ~ TWO YEARS AFTER KINDERGARTEN!

Danial drew both pictures all by himself! Notice the happy face on the sun...He could label all the items he drew. Just look at the track ...the tunnel...the big rock...the trees, different kind of trees..there are palm trees...coconut trees...and the small sun smiling on the top right hand corner....His pictures are so detail like there are stories behind it...

When the light gets brighter and the costs gets bigger...

January 2006

Our trusted pediatrician suggested Danial enrol a kindergarten; a kindergarten for typical kids(kids with no developmental delay). According to Dr Amdan, many kids with autism or any developmental delay would adapt to the surrounding of the typical kids and would successfully show tremendous improvement. And that was exactly what happened to Danial..

April 2006 (4 months after starting kindergarten...a year after speech therapy)

THE SPEECH AND LANGUAGE REPORT

General information.
Ahmad Danial is an active boy. During the first appointment, he showed poor global skills which include preverbal skills, receptive skills, expressive skills and play skills. After intensive training is given (specific supplement prescribed by pediatrician, weekly speech therapy and entering Montessori kindergarten and other alternative therapy) he improves gradually. He plays more appropriately and in a variety way. He has more spontaneous verbalize expression.

PERFORMANCE

a) The preverbal skill

He is able to pay attention to each task given for full 15 minutes. He is able to sit down appropriately to each task given. He has spontaneous eye contact to object given and able to maintain the eye contact. He has spontaneous eye contact to name calling. He is able to request appropriately by palm raising and by expressing 'nak'. His imitation skills has grown appropriately.
b) receptive skills

He can recognize familiar items around him either in picture or real object. More than that, mother reports that he can point to the correct item asked such as family members and body parts. His skills develop through consistent task done weekly and exercise at home. He is able to perform simple basic instruction given spontaneously (eg close the door, keep the box)

c)the expressive skill

Most of the time he will use the appropriate sound with event.

Recommendation

It is recommended that Ahmad Danial to continue the existing program. A visit to an Occupational Therapist is highly suggested to assess him and to receive more opinion in order to improve his ability.

Siti Zurul Ain Abd Jabar

Speech and Language Therapist

DANIAL'S PROGRAMS

between January 2006 - May 2006

Montessori Kindergarten - 15 hours per week

Gymnastics - 1 hour per week ( to increase attention span and improve concentration)

Speech Therapy - 1 hour per week

Alternative therapy - 2x a month

Total cost = RM1000 per month

between June 2006 - December 2006

Montessori Kindergarten - 15 hours per week

Gymnastics - 1 hour per week

Speech Therapy - 1 hour per week

Alternative Therapy - 1x per month

Occupational Therapy - 1 hour per week

Total cost = RM1120 per month

O Lord! Draw my son from the evil..!!! Go..go..stay away from my son!

Dr Zainal Ariffin, my doctor at SMC (Selangor Medical Centre) suggested us brought Danial meet Dr ....(nama dirahsiakan...), the pediatric neurologist at S_MC who happened to be Dr Zainal's wife's colleague when both of them worked together at Hospital Selayang. And according to Dr Zainal, Dr 'she whose name should not be mentioned', was the only pediatric neurologist in the area. Since i have been seeing Dr Zainal for many years, i trusted his advise.

A pediatric neurologist...emmmm...the title sounded soooo professional..and there we were, my husband and me, with our hyperactive Danial, all set to meet this Dr 'she whose name should not be mentioned'. Yes...we wanted to give Danial the best right? So of course that would include bringing him to see the best doctor we could afford to right?"Ahmad Danial Ahmad Kushairi!" the doc's assistant called...Danial was still running around the waiting area while his dad ran behind him in the effort of getting hold of his hand..."alamak...eh bang, u keja la Danial, i masuk dulu clinic ea?" I told my husband.So, i entered the doc's clinic first..."mane anak!??"...asked doc 'she whose name should not be mentioned' dengan kasarnye.(aik...kasarnye doc ni...dlm ati i berkata...)"owh, die belari lari, the father is trying to catch him. They will join me in a short while..." said me trying to compose myself. Then Danial and his dad entered. As usual my husband would smile at the doc as a mean of respecting her position of course, pediatric neurologist la katakan..."ha! turun kan anak tu. Bia aje die...i will observe him while we talk..."

"a..kenapa dengan die??" asked the doc 'she whose name should not be mentioned' dengan tegasnya for what reason god knows why...(aku buat salah ke?? yang die ni defensive tak pasal2 ni nape? dlm ati i berkata lagi...)

"my family pediatrician observed Danial a few months ago and pointed out the possibility of him being autistic. We are here because we were suggested to see a pediatric neurologist to rule out any problems which...." my explaination was stopped by the ringging on the doc's handphone...

"ape?? no..no...bukan 2 sudu...satu sudu sudah! Dah..jangan tepon mama lagi! Kan mama dah bagi instruction tadi!" snapped the doc 'she whose name should not be mentioned' to the caller whom i presumed to be one of her kids. And in the effort of avoiding anymore distraction from the handphone, she abruptly switch off the phone and practically threw the phone on the desk...right in front of me! From the corner of my eyes, i could see my husband started to show his disapproving look. "i was saying that we want Danial to..." i tried to continue with my explaination..."diam!" snapped this saiko..opps...Dr 'she whose name should not be mentioned'. " i am observing him now.." ...she claimed. So diam la i ni...ye la, pediatric neurologist wanted to observe la katakan...Danial was then sitting on the floor playing with some lousy toys in the clinic...me and my hubby sat quietly...no sound made (takut juga kang doc ni jadik vampire ke ape terkam kat we all ke kan...). Danial was playing with the toys with his legs bent backwards like a 'frog' style tu..."ha!! duduk tu..haram tu duduk cara tu!"...the doc suddenly spoke...

(I was telling myself at that instant ~ ha??? haram???? O that's it!! I am not going to tolerate anymore of this for another second!) At that point..i did not listen to any thing that came out of the doc's mouth...i didn't give a damn if she was a pediatric neurologist or not...i think a 'saiko'logist would be more appropriate for what she potrayed to us. She finally stopped talking (god knows what she said...). My husband suddenly picked up Danial from the floor and without looking at the doc, told me that he and Danial will wait outside the clinic. Still trying to sound nice to this woman who was labelled as the pediatric neurologist...i requested for a reference for Danial for my record...."tengok la nanti...ha u tengok la ni, bape tebal fail2 yang i kena refer ni..so your son ni...tengok la ujung bulan ke....tp lagi 6 bulan bawak die datang lagi bole la tengok lagi development die".I just smiled and just walked out of the clinic.

To this doc 'she whose name should not be mentioned' - See you in 6 months time? Are you kidding me?? u bet this will be my last time bringing my son to you...I will not allow you set your eyes on my son ever again even if you are the last doc alive on this planet!

To parents out there:

Yes, of course we would like to give the best therapy and the best doctor or specialist for our kids. But, trust your instinct as parents. No one..and..no one in this world that know our kids more than we do. So, in the effort of wanting the best for our kids..at the end of the day...look into your heart and use your intelligent judgement to decide what would be the best for them...

6 months after therapy

Let there be light...where is the light? Let there be hope...is there any hope?

A friend of mine who has a son with a developmental delay once advised me...

"hey, you know, whatever you do, no matter how much time and effort you have invested on your son, at the end of the day try not to hope too much from it okay...just do your best by expecting not much will change okay? But if it does change...just say syukur to Allah...".I just replied " ok...insyaallah, i will".

Boy...if only it was as easy as how i replied to her on that day. It was almost 5 months then but Danial didn't show a slight improvement at all after all the therapies he engaged in. I sat at the table in the kitchen watching Danial played his lego blocks and i wondered ~ "will he ever speak? will he ever respond to his name? does he know his name? Worst of all, does he know i am his mom?". 5 months passed but Danial seemed not to respond to any of the treatments he received. My hope began to crumble...my strength weakened...With a cup of coffee in my hands...i didn't realise tears streamed down my cheeks when i silently spoke to God "o lord, please don't leave me...".

"Oh god...there is light!"

It was raining quite heavily that December afternoon in 2005. Thank god, Siti had the gate readily opened for me. I drove slowly into my car porch...in the midst of the noise from the car radio and the heavy rain...i heard a tiny voice, like a kid's voice outside the car...i stopped my punto, turned off the CD player...now the sound became louder...i thought "laaa anak sape ni ujan ujan men kat luar ke??". I opened the door to get out of my car...my heart almost stopped. There i saw my son Danial stood on the chair by the window shouted " iiiibbb bbuuuuuu...iiibbb bbuuuu....". It was 25 days before he hit his 3rd birthday and that afternoon in December 2005, was the first time Danial called me ibu. I did not get down from the car. Instead, I sat in the car for almost 30 minutes just listening to Danial repeatedly calling me ibu...i wanted to relish every moment of joy of hearing Danial called me ibu for the first time....On my prayer mat later that day, i prayed to God " o lord...thank you for not leaving me...".

At the end of December 2005, Danial's achievements were:

1. Speak one word sentence. The obvious ones ~ ibu, aba,nak, no...

2. constant spinning ~ 95% stopped
3. Completely recovered from obsession on lining up toys, books and tapes
4. Engage in spontaneous play~ play hide and seek appropriately
5. Bring to us toys for our attention
6. Climb up our bed for our attention
7. Show separation anxiety when we left the house ~ know that when ibu put on tudung means 'going out'
8. No more head banging or biting
9. Show less sensitivity to loud sound
10. More receptive towards huggings and body contacts

Treatments & Therapies..~"mirror mirror on the wall...which one is THE best of all??"

May 2005 (when Danial was 2 years n 4 months old)

My husband and i immediately educate ourselves on autism and ADHD (attention deficit hyperactivity disorder) by surfing the internet. Danial started speech therapy a month later. When Danial began his speech therapy session, he did not comply all the checklist for a one year old (he was then 2 years 4 months...). Wow! My worries deepened. I hadn't noticed how serious Danial's condition was until i saw the checklist. According to the speech therapist's observation, Danial had a very poor eye contact, very poor sense of awareness, potray some autistic behaviors but did not see too much of autism in Danial (again, this was just an opinion and not an assessment).

Danial was immediately had his ears checked by an audiologist at Sunway Medical Centre, Bandar Sunway. This is the first step to rule out Danial's speech delay was not due to hearing impairment.

At the time Danial was diagnosed for having the possibility of a developmental delay, i insisted on wanting to bring Danial meet Dr Helena. Dr Helena is an alternative treatment specialist, specialising in cupping with acupunture. When Dr Helena laid eyes on Danial, she immediately said that Danial has a problem in his head. "Some things are not connected" she claimed. She suggested cupping so as to promote better blood circulation to the brain and strengthen his muscles. Dr Helena also suggested Danial being put on flower therapy ~ a therapy using flower essence which could promote calmness and alertness in kids like Danial who was then very not focused and hyperactive.

From May 2005 - December 2005, the treatments Danial received...

1. Speech Therapy - 1 hour (abt 50mins) per week

2. Alternative Therapy with Dr Helena - every two weeks

~ flower therapy to promote calmness, concentration and response

~ cupping for muscle strength and better blood circulation to the brain

Total cost = approximately RM650 per month

My son Danial & Autism ~ the checklist

Does your two- to five-year old child..
1. not respond when you call his or her name or seem generally unresponsive?
2. not use his or her index finger to point to objects to indicate what he or she wants or to show you something?
3. have intermittent or no eye contact?
4. still not speaking?
5. not speak anymore?
6. demonstrate odd or idiosyncratic speech or language- such as endlessly repeating nursery rhymes, echoing, repeating words or phrases or making unusual sounds?
7. demonstrate odd or idiosyncratic behavior - such as hand flapping, finger flicking or constant spinning
8. experience emotional volatility and tantrums that are out of control?
9. demonstrate a regression in overall behavior - including communication, play and social skills?
10. have poor motor coordination when it comes to physical activities such as running or climbing?
11. fixate on objects such as ceiling fans or bright lights or parts of objects such as the wheels of a toy car?
12. seem highly distracted or spaced out?
13. show an inappropriate attachment to objects or frequently put objects into his or her mouth?
14. engage in obsessive, repetitive behaviors such as opening and closing doors, turning light switches on and off or lining up cars?
15. display ritualistic behaviors such as lining up books on the floor in a specific order at specific times?
16. engage in little or no spontaneous pretend play?
17. constantly play by him or himself, showing no interest in peers?
18. never bring or show you toys?
19. show no separation anxiety when you leave?
20. resist change and insist on sticking to specific routines or rituals?
21. engage in self-injurious behavior such as head banging or hand biting?
22. show no apparent fear of danger or pain?
23. not like to be hugged, cuddled or touched?
24. have unanimated facial expressions and or monotone voice?
25. demonstrate extreme over or underactivity?
26. display a lack of sensitivity or oversensitivity to sound, touch or visual stimuli (such as loud noises, rough fabrics..)
27. have unusual sleep patterns(such as trouble falling asleep or not sleeping through the night)?
28. eat only limited, specific foods?

Those nos highlighted were what Danial had when first observed by the doc and therapist when he was first diagnosed as having mild austism with ADHD (attention deficit and hyperactivity disorder). He was 2 years and 4 months old then.

Danial at the age of 2 years and 4 months old ~ at the time he was first diagnosed with mild autism with ADHD

Tatkala syawal menjelang...

A day before raya...

Kecut lak daun kelongsong ketupat ni..Tu la..beli kelongsong ketupat lambat sangat, tinggal le yang kecut kecut sikit. Kecut pon kecut le..lagi kan tak de ketupat, cam tak raya lak kang. The time showed 5.30am in the morning. I just finished my sahur. Everyone else climbed up on their beds...resumed their sleep. Sitting bersila on the kitchen floor, in the early break of the daylight, patiently i filled the kelongsong ketupat with prewashed beras...alone. At ths time, for many years,without fail, reminded me that the moment has come....in a few hours...for the next 3 days of syawal...i will be transformed...jadi la daku cinderella jadian...masak,masak, masakkkk...eeemmm....ain't different from anyone else i guess...

The last buka puasa, as always, we all will eat the ketupat, rendang, kuah kacang and kuah lodeh i prepared for 1 syawal and brought the remaining to my mom-in-law's house in KL the next day.

First hari raya day is always a gathering occasion at my in law's house from the first year i married my husband. If i am not mistaken, in the 15 years of my marriage, i only celebrated 1st syawal morning with my mom once. That also, we would rushed to KL as soon as we had breakfast after solat sunat hari raya. After that year, it was always at my in law's till this day. Of course, in the early days of my marriage, i remembered feeling sad everytime i woke up in the early dawn of syawal and heard the takbir from the nearby surau and wished i was with my family. But after awhile...i learned to accept and understood the fact that my husband would want to mohon ampun and maaf from his parents first before he does to anyone else and I thought, well..why not make it possible and easy for him. Even now when we have a bigger family and sleep over at his parents' place would be inconvenient, we would rushed to KL right after solat subuh and reached KL just in time for solat sunat raya with his brothers and in the past, with his arwah father. And this year, even when his father had passed away, was not an exception...

1st syawal...

This is my husband and his two younger brothers, Talha and Paie (alamak paie...kalau awak pegang snapang..dah cam taliban dah rupa awak dek....hahhaha) just balik from solat sunat hari raya. My husband is very close with his brothers. A bond that anyone can blindfoldedly see very strong and sturdy, a relationship i would like to inculcate in my children, an example of what family ties all about. Respect is the word. Yes...they respect each other irregardless of who is the eldest or who is the younger among them.

These are my kids! These people can never stay still even for a second...terbanyak makan vitamins i rasa..active betul. This year we decided to have the same color tone for our baju pagi raya...not identical though. Danial's baju melayu was ready made and i got it from PKNS complex but my girls' baju kurung moden as seen in these photo were my own design...

The baju kurung i wore was actually bought 2 days before raya and so did the accessories that came with it...a true definition of last minute raya shopping! Owh...with me in this photo was my darling daughter Najwa Asyikin. Ooo girl, u look so girlish this year. Najwa is very picky with her choice of baju raya or anything comes attached with it. That's why u will see no accessory of any sort on her body...hhahahaha. However, this year, she agreed to let her line of raya attires in the trust of non other than who else...me! (sebab i warned her..."Najwa, kalau awak cerewet sgt this year, smue baju awak tak berkenan...awak raya tahun ni pakai je baju skola ea??")

Nuwairah Aimi...our third girl...hmm..ni Aisyah in the making. Memang kuat bergamba and berposing. Sikit2 gamba die...tgk camera balik..eh, smue ade muka kak ira...hahhahaha.

Haaa...ni hero sape la ni...if not our only son..Danial, dengan jambul yang digelkan and di hairspraykan oleh non other than our in-house stylist~ Aisyah. Teruk la awak kakak, sian gambut adek awak keje kan...Hish...Danial, can u please stay still kejap..bia ibu amek gamba awak comel sikit..Danial looked so hensem in this baju melayu which happened to be secolor dengan abahnye. Aisyah was the one yang pilihkan color baju melayu tu and also chose the sampin for her brother. Pagi pagi raya, lepas mandi and bersiap, Aisyah was the one who siapkan her brother, siap dengan hair style skali and warned everyone not to put Danial on songkok or kupiah or ape2 yang akan rosakkan rambut adik die..hhahahahah! "Jangan pakaikan die songkokkkk...nnti jambul die rosakkkkk...".

Edit mengedit gamba macam ni rupa mmg la keje Aisyah. You guys will notice, unlike Najwa, Aisyah has all the accessories from the hair to the chain around the neck to the earings that could not be seen in the photo to macam macam la yang dia rasa boleh diletak kat her body. But i can't blame her though, look at the mom la...hahahahh. This is something me and Aisyah has in common. Now that we both can share shoes, Aisyah did not bother to shop for her raya shoes this year since she can just put on any of my pairs whichever she think that would suit her dress.

Hari Raya wishes from madam author of this blog...

This pic was taken on the third day of syawal at one of my husband's aunties house. This year, we both are 40 (baru empat puluh k..). We both are very happy to celebrate syawal this year with those we love and care unconditionally...our family members;our mothers,brothers and sisters, uncles and aunts, cousins and not forgetting anak-anak angkat yang jauh di perantauan.. NorJannah Syaqireen, Rizwanie Irmaa and Mohd Zaim Zuhuri who are all now studying in the US. Tidak dilupakan juga, this year is going to be an exciting year for us because one of the dearest couples in our family; Haziqah Zuhuri and Haniff will tie the knot on the 18th October 2008! For Haziqah and Haniff...kami berdua mendoakan kebahagiaan ke akhir hayat and remember that marriage is not all about two people, its all about family...Love not only each other but also each other's family. We are very grateful that Allah s.w.t bless upon us with beautiful and wonderful children; Nabilah Aisyah, Najwa Asyikin, Nuwairah Aimi and Ahmad Danial, whom without them...diibaratkan tiadalah makna hidup kami. Kami berdoa agar Allah s.w.t sentiasa memberkati keluarga kami ini, dimurahkan rezeki dan dikukuhkan kasih & sayang di antara kami....kasih yang sejati..kasih yang abadi...

SELAMAT HARI RAYA TO ALL. MAAF ZAHIR DAN BATIN DARI KAMI BERDUA...

My son Danial and Autism ~ Grief and acceptance

Danial started speech therapy a month later after i had come to term with Danial's problem. I remembered i couldnt sleep for a week ...i couldnt eat much...i cried most of the time. Panic...afraid...i was consumed with all sort of mixed and confused feelings. The possibility of Danial having a developmental delay came as a shock to me. A lot of questions lingered in my thoughts...How severe was it? What treatment available? Is this something that can be cured? What kind of school for such children like Danial? This might sound weird but to tell you the truth, i had never set my eyes on austistic kids. So when the therapist told me that Danial's austism was considered as mild....i could not appreciate it. Mild?? What did she mean mild? How would kids with severe austism look like then? I was totally of no clue of whatsoever what the therapist was talking about. Out of desperation of finding answers and depression of not comprehending the whole situation...i cried for days..i cried when i had my lunch...i cried while sipping my cup of coffee...i cried in the shower...Come to think of it again, i think i have never cried that much in my entire life!

One morning, while sobbing, i told my husband it was not that i blame God for Danial's condition. It was not that i could not accept Danial's condition. I knew right from the moment the doctor pointed out the possibility of Danial being autistic that never once i questioned God "why does this happen to me?". As a matter of fact, i am,to this day, very glad that that question has never come across my mind. So why did i cry u might wonder? Why was i in such grief u might ask...

I was very particular when comes to raising my children...and to many extend, i did not (and still am i think) trust my kids in the care of others. So when Aisyah and Najwa were little, u can imagine i did everything by myself with no maid to assist me. I woke up as early as 5am, cooked baby food for my baby's lunch (as i adamantly believed canned food or instant food on the shelves at Giant was not nutritious enough and i didn't trust the babysitter to cook for my baby),bathed them before sending to the babysitter's house, sent them to the babysitter and zoomed to my morning class at UiTM....At night, i slept with them, woke up three to four times at night changed their diapers...prepared milk with my eyes half closed...those were tiring moments. That did not include those sleepless night when they were ill. You see, with my older two daughters, i did everything all by myself.

Then came Siti, our super duper efficient maid. Siti came in and worked for us as a maid when Nuwairah, my third daughter was only two months old. She was trustworthy, efficient...excellent with children...Siti was a maid made in heaven...She was a true definition of a maid of every couple's dream. When Nuwairah was only eight months old, i got pregnant with Danial.

Because of my hypertension i developed the moment i delivered Danial, i didn't sleep with him at night. And because i was busy juggling my time with work and settling my 2 older girls' who were then have started schooling and catering a demanding 4 year old Nuwairah...i didn't realise i neglected Danial and left him quite totally in the care of Siti. There were many times when i walked in and left the house not realising "eh, i haven't hug Danial yet...". I didn't even realise Danial's poor eye contact and that he didn't respond to his name even at the age of two. The only obvious condition as far as i could remember was that, at the age of two, Danial still wasn't speaking yet and didn't call me or address me as 'mom' like Aisyah or 'ibu' like Najwa or 'mommy' like Ira...He didn't call me anything!

I was in grief because i blamed myself letting go most of my duty as a mother in the hands of my maid until i didn't realise or notice my son's developmental delay in speech was due to austism. I was in grief because i scolded myself for not being a caring mother like i used to be with my older two daughters...I was in grief because i was so scared there was nothing i could do to help my son and that i was too late to help him...

I did not allow myself to be in grief too long. I remembered my husband said... " you just cannot do this to yourself and most importantly, u cannot help Danial if u cannot help yourself...Danial needs you to be strong for him and if you do not have confidence in him, he will never have the confidence he needs to get through all these...yes, of course you can be sad but we cannot just sit and cry but do nothing". My husband's words gave me strength. The words of a caring and responsible father. That moment, i just knew i have to get hold of myself and stop this grief immediately. I had no time to delay. I had to lay out plans for Danial. I knew, i had to give Dr Amdan a visit. And this time, i will be ready with all the questions on austism...and i had my little note book in my hand to jot down every littlest detail of my discussion. At that moment, i looked at Danial and in my heart i silently said "Danial my son, today...ibu will hold your right hand and abah will hold your left hand walk with you and all your three sisters will be walking behind you...we will all walk with you and help you...you are in save hands".

When the rich gets richer and the poor gets poorer...

I am very tired actually. I was about to update my blog on my son Danial but i just cannot put my head on the pillow thinking of what i encountered today.

I went for a spa course somewhere in lembah kelang (rahsia la...) from 10am-5pm. I was supposed to bring with me a model for the hands on session. Initially my biras agreed to come along but somehow trbatal sb she has to make up some artists for a photography sessions. So, cuba teka sape mangsa nye....tk lain tak bukan...Aisyah la! Sukenye Aisyah kena dimanja2kan body die..hahahhaha. But Aisyah is not the main character in my blog today. Seperti biasa, saya yang memang tak boleh tak bercakap ni, akan bertegur sapa dengan the employees of the spa. One of them was Rina (bukan nama sebenar...).

Rina is an experienced spa employee and has a 3 year working experience in the spa of a local hotel in Kuala Lumpur. As i was having my training sessions with Rina, i observed that Rina is very knowledgeable and proficient in her work. Rina even gave me some tips on how to make a homemade sauna herbs and body mask! My conversation with Rina dari kids to husband to hometown...until it came to a point when Rina told me she will be quiting from the spa by the end of this month.

"eh, kan Rina baru keje sini 2 bulan kan...nape pulak nak berenti?" I asked dalam keadaan yang sangat menyebuk..

"tu la kak, sbnarnye aritu boss saya, Puan Zaleha (bukan nama sebenar...) janji nak bagi gaji rm1000 and dapat commission 30%, tp bile dah mula keje, dapat basic rm600 and commission 20% pulak...". Rina replied. " Saya actually dah dapat offer keje kat spa kat shah alam, orang tu nak bayar saya rm1000 tau tapi sebab dah trmakan janji manis Pn Zaleha ni, ni la jadinye. Mana cukup kak, anak nak sekolah lagi...saya dapat commission 20% je..saya berpengalaman ..." keluh Rina.

I was stunned and terus terdiam. Not because i was running out of things to say or comment...on the contrary, so many things ran through the chamber of my thoughts all at the same time.

To the owner of the spa, Pn Zaleha: Why? Why didn't you keep your words ?If you have promised to pay this much to this person, why didn't you do so? Isn't there any sense of guilt that because of you, the household income of this woman is affected? In today's economic situation when people are working night and day to make ends meet, how could you make profits by taking advantage on others?

Rina eventually told me that she is not planning to go back to her hometown, Kota Kinabalu, very soon or open a business as what she had told her boss the reasons she quits. Rina explained to me further she would rather not continue working for the spa feeling taken advantage of her skills and experiences. Instead, Rina plans to operate body treatment from home. Some questions immediately came to my thoughts. How much can she make in a month? Who would be her target market? Will the income she obtains from this enough to support her family?

The course ended an hour earlier and i thought, emm...why not ask Rina give me a full body massage. I wanted to feel Rina's experienced hands. I wanted to test myself how skillful is Rina in her work.

The one hour massage ended with only one thing in my thought...Rina IS very good and skillful! Why doesn't an experienced and skilled person like Rina open her own spa or salon? The obvious hurdle would definitely be the start up costs. Rina shared with me her misfortune a few years ago when she lost RM10,000 investment to a third party in the effort of opening up a spa with a friend.

"Macam nak gila saya kak, abis duit simpanan saya, duit kwsp saya keluarkan konon nak buat bisness ni, kena tipu!" sighed Rina.

RM10K to a household income of not more than RM2K per month is comparitively the same to RM100K to a monthly household income of RM15K-RM20K....I just couldn't help but felt pity for what Rina went through. But again, i couldn't escape this one question...

"eh, macamana Rina boleh kluarkan duit kwsp? Nak bukak bisness boleh kluarkan duit kwsp?" tanya la saya ni dengan penuh rasa pelik.

"tak de, kluarkan duit kwsp tu cakap nak beli rumah la." explained Rina.

"haaa hahhahaha...tu la agaknye...starting dah tak betul tu..." sambil ketawa mesra i gave comments yang tajam.

"Haahahhaha, tapi rumah tu rumah kedai. Jadik ingat bawah bukak kedai tingkat atas rumah saya la...ok la gak kan kak..." Rina defended herself.

As i got dressed and ready to go home, i advised Rina to be patient and never give up hope to strive for a better living for her and her family. In my own words to Rina...

"Tak pe ya Rina, hilang RM10K tu ada hikmahnya. Fikir yang positive la ya. Allah sayang kat Rina and keluarga. Ada rezeki lain yang lagi berkat Allah sediakan untuk Rina dan anak anak. Tuhan nak duga Rina sikit and sekejap aje tu. Pada akak, lain kali, insyaallah, kalau ada rezeki lagi, nak bukak bisness atau nak buat ape ape pun yang nak generate income untuk keluarga nak cari nafkah buat keluarga dan anak anak, jangan sesekali mulakan dengan perkara negative. Kalau nak keluarkan duit kwsp sebab nak beli rumah maka beli la rumah. Kalau nak buat pinjaman untuk mulakan bisnes maka buat la bisnes. Dalam ape perkara pon jujur is satu titik permulaan yang AMAT penting...bia la we start small but gradually ends big rather than start small but get shrunk immediately...".

For people like Pn Zaleha, yes you gain profit by engaging on a skilled and experienced employee like Rina but because of your inefficiency in managing your employees, the profit is only short-termed as an experienced and skilful employee like Rina can actually find work at any other spa. To me, to lose an employee like Rina, for a spa bisnes which is a client based, is a significant lost.

For those dalam category Pembayar Gaji, jangan lah kita terlalu taksob mengaut keuntungan sehingga hilang rasa timbang rasa dan kemanusiaan dalam sanubari kita. Jangan la kita menjadi kaya dengan keperitan orang lain. Yes, we can get richer by taking advantage on the poorer, but i believe and berpegang teguh to this one principle: Ketenangan jiwa dan keberkatan hidup tidak akan boleh dibeli dengan wang ringgit.

For others dalam category Makan Gaji, jangan lah desakan hidup kita mendorong kita kepada ketidakjujuran. I believe, though money is no doubt, is very important to ensure better living but keberkatan hidup dan ketenangan jiwa dari rezeki yang halal wajib menjadi matlamat hidup seseorang. Janganlah dengan simpanan yang sedikit yang kita ada, in the effort of wanting to get rich fast, we get poorer in a blink of an eye...

This is just my opinion...Till we meet again...Salam.

Of autism and my son Ahmad Danial: The beginning~an unpleasant surprise...

I have started writing or jotting down all these even when Danial was 3 years old, before the advent of blogs or what not...I was not a diary writer but the need to write all these down came to my mind when i found that there were instances when i desperately wanted to talk about Danial's progress or development but sadly, noone was around. It was especially frustrating when you try to talk openly about your son when noone is, sort of, genuinely interested. Why weren't they interested, you ask me? Well, i guess, having a 'special' child was a scary idea one could imagine or they were too scared to give comments; afraid if they would wrongly said things and would unintentionally hurt me. But actually, I was totally open about the whole thing. Hmm, giving them the benefit of the doubt, i would say they just wouldn't want to take the risk.

Born Ahmad Danial bin Ahmad Kushairi.
Birth weight : 3.17kg
Head circumference: 33 cm
Length : 51 cm
Birth date : 25 January 2003

Time of birth : 10:58 am

Danial was born normal in every way. It was me who was not. I instantly developed hypertension practically right after delivering Danial. Because of my condition, i was advised by doctors not to sleep with baby Danial at night. Consequently, Danial was, most of his first 18 months, being cared for by our, than, maid Siti. Danial was the only child i didn't sleep with,much due to my hypertension. Waking up in the middle of a deep sleep more than twice in a night would instantly cause headaches the next day.

Danial was a well-behaved toddler. My arwah father-in-law always referred to Danial as "baik cucu atok...diam aje..". As far as i could remember, there was nothing unusual about Danial. He crawled, he stood up, he made his first steps...all at the right time. Danial's speech delay was not noticed immediately since i always ruled out that boys are generally late in speech compared to girls. Until one day, when i brought Nuwairah to see our pedeatrician, Dr Amdan. I pointed out to Dr Amdan the fact that Danial was still not talking yet...Danial was than 2 years 4 months old."Dia suka main tayar kereta mainan tak?" Dr Amdan questioned me. "A ah, Danial ni satu prangai tau dr, suka trbalikkan vehicle toys dia and pusingkan tayar tu. And pas tu, dia suka sangat line up kan ape ape la, books ke, toys dia ke...orang lain tak leh kacau tau, ngamoknye macam kite rotan die...hahahaha" I gave a lengthy answer with a laugh."owh really..that is one of the many many symptoms of autism..." explained Dr Amdan still observing Danial from his seat. I looked straight into Dr Amdan's eyes in disbelieve. I was stunned. I was shocked. I gradually moved my eyes to Danial, observing my son in shock and disbelieve, trying to grasp what i ve just heard...to accept the unpleasant surprise....My son, my only and youngest son, Ahmad Danial had autism.