Sunday, November 16, 2008




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)


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


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 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)
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
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.
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
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..." 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?? 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 la, pediatric neurologist wanted to observe la katakan...Danial was then sitting on the floor playing with some lousy toys in the and my hubby sat 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 your son ni...tengok la ujung bulan 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 in this world that know our kids more than we do. So, in the effort of wanting the best for our the end of the day...look into your heart and use your intelligent judgement to decide what would be the best for them...

Saturday, November 15, 2008

6 months after therapy

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

Friday, November 14, 2008

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