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