ATM Makan Duit

Tadi aku ke Bank Islam nak keluarkan duit.. masa tunggu duit keluar lambat sangat plak mesin tu proses. Last-last kad je keluar.. duitnya yelek.  So aku pegi mesin sebelah dan keluarkan amount yang sama. Masuk kereta, aku pun cek la online.. cikaro betul.. duit masa 1st transaction tu dah kena tolak pulak. So aku pun call bank.. bla bla bla.. orang bank kata dia akan buat report dan refund akan dapat dalam 10 hari bekerja biasanya. Hampeh punya ATM! Seumur hidup ini first time benda macam ni happen. Kad kena telan pernah merasa sekali dua, ATM proses lama lepas tekan jumlah duit pun pernah tapi duit tak tolak. Ini kali la kena scam.. bukan orang atau bank je scam orang ye.. mesin pun pandai scam orang rupanya. Dah la sesak.. tetiba duit kena ambik bank.. mana hati tak sakit. 

Life After The Diagnosis Part 3

Sebagai parents, aku rasa part treatment ni yang paling ibu bapa nak tahu dan concern so aku akan share untuk pembacaan diri sendiri terutamanya next time. Tapi all this treatment ada criteria untuk syorkan based on gred A, B dan C. Aku just note untuk pengetahuan umum je without zooming into target grade yang disyorkan untuk receive the treatment. Antara treatment yang disyorkan dalam Clinical Parctice Guide – Management Of Autisme Spectrum Disorder In Child And Adolescent by MaHTAS, KKM adalah tanpa ubat dan dengan ubat. Aku Cuma nak sentuh pasal treatment tanpa ubat antaranya 

1. Applied Behaviour Analysis (ABA) 

Ada beberapa kaedah ABA tapi yang paling famous kaedah Loovas. Dalam buku The Autism Sourcebook by Karen Siff Exkorn, beliau memilih kaedah ABA sebagai foundation untuk terapi anak beliau selain OT dan speech teraphy. Ikut pengalaman penulis, sesi ABA ni panjang dalam 40 hours per week dan menggunakan konsep reward.  

2. Speech, Language and Communication Interventions

a.    Naturalistic Approach

                                               i.     Responsive Education and Prelinguistic Milieu Teaching (RPMT) – improve social communication and language learning

                                              ii.     Reciprocal Imitation Training (RIT) - improves elicited and spontaneous imitation of object and gestures

b.     Augmentative and alternative Communication (AAC)

                                               i.     Unaided - nonverbal natural communication guna gestures and mimic muka

                                              ii.     Aided - guna external support macam communication board dengan grafik visual guna gambar, lukisan, printed words macam Picture Exchange Communication System (PECS)

c.      Video Modelling – guna video 

3. Occupational Teraphy (OT) 

        a) Social Skills and Self-help Skills – untuk imporvve social skills & self-help

        b) Sensory Integration Therapy (SIT) – improve sensory

        c) Joint Attention Intervention – improve attention

        d) Perceptual Motor Training – improve eye hand coordination

4. Other Interventions / Programmes

So    a) Social Stories

        b) Developmental, Individual-Difference, Relationship-Based (DIR) /Floortime

        c) Music Teraphy

5. Parent Education and Support

6. Cognitive Behaviour Therapy (CBT)

7. Treatment and Education of Autistic and Related Communication Handicapped Children (TEACCH)

8. Diet

Untuk adik kalau berdasarkan appointment yang dapat, dia ada appointment OT dan speech. Ada satu lagi kaedah, Early Intervention Program (EIP) tapi aku tak sampai lagi ke maklumat EIP ni guna approach mana.

Life After The Diagnosis Part 2

Hari tu aku bagitau aku ada baca Clinical Parctice Guide – Management Of Autisme Spectrum Disorder In Child And Adolescent by MaHTAS, KKM. Guideline ni aku panggil CPG, dikeluarkan pada 2014 dan akan revise pada 2018 katanya tapi so far aku takde jumpa lagi la new version. Maybe dah tak di kongsi kepada umum aku tak sure. Aku cuma baca untuk personal knowledge mengikut pemamahan aku sendiri dan khas untuk pemahaman sendiri.

MaHTAS tu siapa? Through their website mentioned “The Malaysian Health Technology Assessment Section or known as MaHTAS was established in August 1995 under the Medical Programme, Ministry of Health (MOH) in keeping with the Ministry’s policy of ensuring that safe, effective and cost-effective technology is being used in the MOH facilities”. Nak lebih info boleh la ke website MaHTAS sendiri.

Apa yang dinyatakan dalam CPG tersebut?

1. Pengenalan

Dalam CPG ni explain “Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder charaterised by impairment in communication, behaviour and social function beginning of the childhood”. Secara kasarnya, autism a.k.a ASD ni adalah satu jenis gangguan sebab tu dia dipanggil disorder, bukan disease a.k.a penyakit. Autism bukan penyakit. ASD ni adalah gangguan kepada perkembangan neurological yang menyebabkan gangguan dalam komunikasi, tingkah laku dan fungsi sosial pada permulaan zaman kanak-kanak.  

Kalau dengar neuro, yang aku bayangkan adalah berkaitan otak dan saraf. Mengikut pembacaan aku WHO kata “Neurological disorders are diseases of the central and peripheral nervous system. In other words, the brain, spinal cord, cranial nerves, peripheral nerves, nerve roots, autonomic nervous system, neuromuscular junction, and muscles”. Central nervous system (CNS) tu merujuk kepada otak dan spinal chords manakal pheriperal nervous pula merujuk kepada saraf-saraf yang connect seluruh badan dengan CNS. Fungsi utama nerves dalam badan kita ni untuk transmit signal. Nerves yang transmit signals dari otak dipanggil motor nerve & transmit information dari body to the CNS pula dipanggil sensory nerves. Sebab tu kalau cakap dengan doctor, “sensory & motor” adalah dua perkataan yang kita akan kerap dengar when dealing with autism.

Dalam tu ada la explain few things abot autism,  apa itu autism, siapa yang ada risk untuk dapat anak autism, macamana proses screening, assessment & diagnose, treatment dll la. Tapi kena ingat, garis panduan ni tak target parents biasa like me as this is more kepada professional use yang terlibat macam doctor, psychiatrists, care providers, therapists, audiologists, nurses, pharmacists, policy maker, educators.. not us,  so kena baca with our own discretion.

2.  Faktor Risiko

Dalam CPG KKM ni juga ada mention apa faktor risiko yang mungkin boleh menyumbang kepada anak ada autism contohnya umur parents, baby premature, kesan dari baby yang lahir tak cukup oksigen, genetic risk, pregnancy supplement, vaccinaction. Untuk vaksin tu dorang refer pada vaksin MMR tapi based on study katanya tiada link antara vaksin dan autism. 

3.  Screening

Part ni bincang siapa yang disarankan untuk buat screening autism contohnya anak yang emaknya umur lebih 40 tahun macam aku, or bapa umur 50 tahun or umur ibu lebih 35 tahun masa dapat anak first, bayi premature dll. Macamana proses screening ini dibuat? Doktor akan guna tools macam checklist on Modified Checklist for Autism in Toddlers (MCHAT), atau questionnaire macam Social Communication Questionnaire (formerly known as Autism Screening Questionnaire) atau SCQ, dan lain-lain screening tools macam General / broadband developmental screening tools (CBCL, ITC, PEDS) dan Screening tools specific for ASD (CHAT, CHAT23, GARS, SRS, ASSQ, ASDS). Tools yang digunakan bukan hanya untuk di negara kita tapi the develop untuk kegunaan international. Apa barang la semua short form tu? Yang tu kena la khatam baca CPG tu..

Masa sesi interview dengan doctor hari tu, doktor memang tanya macam-macam soalan such as habit adik, rutin, apa yang dia suka dan tak suka, how pembawaan diri dia, our family history ada tak yang ada autism dan maklumat all ahli keluarga such as berapa bilangan adik beradik ibu bapa. Then kena isi MCHAT.
 
4. Assessment and Diagnostic
Doktor akan asses dan diagnose based using criteria from the Diagnostic and Statistical Manual of Mental Disorders [DSM-IV-TR, 2000 (Appendix 4) and DSM-5, 2013 (Appendix 5)] or 10th-Revision of International Classification of Diseases [ICD-10] (Appendix 6). Ini standard tools yang digunakan all over the world untuk proses asses dan diagnose. Apa benda dalam dokumen tu aku pun tak sure sebab this is more to technical. Cukup lah setakat tahu sebab DSM-iv dan DSM-5 ni mungkin kita akan jumpa masa baca buku-buku yang related to autism. 
 
Selain treatment, aku percaya parents juga curious about apa level autism anak mereka. Based kon DSM-5, severity levels for autism spectrum disorder  terbahagi kepada 3 level yang dibezakan dari segi social communication dan behaviours.
 
5. Comorbidities and Other Difficulties

CPG ni juga ada mention tentang  komorbid a.k.a istilah perubatan yang merujuk kepada individu yang menghidap dua atau lebih penyakit yang tidak berkaitan secara serentak dan kesukaran-kesukaran lain yang turut dihadapi oleh kanak-kanak autism macam intellectual disability, ADHD, masalah tidur, sawan, gastrointestinal problem, motor coordination dll. Maksudnya di sini, anak autism ni tak semestinya ada komorbid lain. 

6. Investigation

Investigation ni contohnya audiology evaluation. Kebanyakan kanak-kanak dengan ASD juga ada masalah speech dan language delay. Macam adik, antara appointment yang adik kena attend adalah audiology. Buat masa ni aku belum dapat explain sebab appointment adik bulan depan. 

7. Treatment
Sebagai parents, aku rasa part treatment ni yang paling ibu bapa nak tahu dan concern so aku akan share untuk pembacaan diri sendiri terutamanya, in my next post. Tapi all this treatment ada criteria untuk syorkan based on gred A, B dan C. Aku just note untuk pengetahuan umum je without zooming into target grade yang disyorkan untuk receive the treatment.

Life After The Diagnosis Part 1

As parents yang just recently anaknya didiagnose autism, aku tambah aktiviti membaca buku dan google pasal autism di internet to gain some knowledge here and there. Aku belum lagi join any support group as of now.. hari tu try nak join this one grup dalam FB skali kena reject daaa… maybe tak comply group guideline kot. It is best kalau dapat berkomunikasi dan berkongsi dengan parents yang juga ada anak autism but I should bear in mind sebelum join any.. tak semua kes anak-anak autism ni adalah sama dari segi severity, handling dan treatment. Take all the info you needed but don’t stress yourself out and overwhelmed by all the information.. this is a self-reminder.

I might not able to see the whole picture yet tapi as of now aku rasa apart from seeking for professional opinion.. parents support group is good. Selain tu kena juga rajin membaca be it a book atau di internet. Sekarang ni aku sedang baca satu buku and hoping to finish it soon. Lepas belajar, seingat aku lah aku tak de lagi  khatam hatta sebuah buku walaupun aku ada banyak gila buku.. hahah. All I do is beli buku dan baca first few pages or flip and skip here and there sampai last page.. oops! Hahahaha

Back to the book, it tell a story from a mother point of view dan quite informative tittle “The Autism Sourcebook”. The author Karen Siff Exkorn claimed the book is from mother whose child recovered. Dia pun ada anak autism, a boy yang didiagnose pada usia 2 tahun and he is fully functional now. Walaupun buku dia ni merujuk kepada personal experience dan how it is di negara dia.. tapi aku suka sebab penulisan dia structured covering from diagnose, treatment, coping and healing. This is a good book untuk parents macam aku yang terlalu banyak perkara yang perlu diproses dan difahami selepas anak didiagnose autism, dan at the moment cuma nak tahu secara overall picture terlebih dahulu before digging deeper about what is autism, how to deal with your kids, your own emotion dan seek for information in term of treatment option etc. This is the book for me at this level. I am yet to go into technical and all the detail. All I need is the “picture” secara general. Next dalam pembacaan aku maybe a bit technical, Clinical Parctice Guide – Management Of Autisme Spectrum Disorder In Child And Adolescent by MaHTAS, Kementerian Kesihatan Malaysia (KKM) just to get some knowledge on pengurusan autism oleh profesional di negara kita dari segi how the diagnose is made, how they handle the case and treatment yang available.

Life After The Diagnosis..

What was the reason we seek for professional opinion on adik? I do not remember since bila tapi my instinct rasa macam something. Tak tahu nak explain perasaan tu macamana actually. Bukan la rasa macam something is not right or not normal tp “something”. It started to alarm me bila panggil his name dia tak ada respond, not totally takde respond sebab sometimes bila panggil tu dia toleh juga. Tapi takde la rasa macam off” sangat sebab kakak dia dulu pun macam tu that she did not respond to name calling, average eye contact, did not address us as mamme and adih, did not say a word but cried instead every time she wanted susu. For adik, bila dia lambat berjalan dan meniti berjengket, belum pandai bercakap or panggil us or approach us kalau nak sesuatu.. instead dia cuma nangis dan hentak kepala, suka pusing tayar and bila pandai sikit lay on his stomach main kereta which is a must kalau main kereta, attach dengan selimut dia to the extend menangis kalau selimut takde.. masa tu aku makin rasa something is off. Kalau compare perkembangan dia dengan kakak dia, lebih kurang sama except for the part lambat berjalan, suka benda berpusing dan head banging which kakak dia xde buat. 

Apa expectation aku masa jumpa doktor? Frankly speaking.. it was a 50/50 for me. 50 for all the delay on his motor skill, communication and head banging and another 50 sebab he look fine for a one year++ boy except for that 50 i mentioned earlier. People say boys blossom later than girl, right?! 

How do i feel masa doktor pakar terus confirm he is autistic even on the first time seeing him on a session that did not last even 10 minutes and all based on our interview with her sub-ordinate? To be frank, tak de la terkejut dengan diagnose tu tapi terkejut dengan how he was been diagnosed tu, yes. The younger doktor mula2 bagitau based on her assessment adik needs more further assesment and some therapy session to confirm wether he is really autistic although through her assessment adik did show some of the autistic charater. Then she consult and explain tu her pakar, after not even 10 minutes with minimal talking to us.. the pakar asked me what was our concern bringing adik for the assesment. I said my concern and she told me what she saw is adik meet the autistic criteria and she said she can confirm it, right now, as we spoke. She then proceed to tell us that adik need OKU card and will proceed to set an appointment with Children Developement Centre CDC for OT and speech teraphy.

How do i feel about the doctor? I dont know.. maybe her approach on conveying the news to us was like that because of my cool and understanding reaction to hearing adik was diagnosed as autstic, that i did not cry my heart out and show her i was extremely in denial about the news.. maybe? 

But i think she could do better and add in more human touch. Maybe she could just told us that she was sorry that the news was shocking to us… especially when the diagnose was  made when adik was only 1year and 9th month.. not even after his two years. Maybe she could just explain and say something that sooth our aching heart instead of saying “yes,i just confirmed it now” after i asked her why was the diagnosed confirm when adik is not even 2 years old.  Maybe she did not have to mention about the OKU card first, instead of last on her news breaking. I really dont know how to process the situation and it still ache my heart to recall the moment.. or maybe it was not how the doctor handle the situation that time that hurt me, but i was because i was frustrated with the diagnose instead.. i really dont know…

Does Adik Has Autism?

Dekat jam 8.30 baru kami sampai dekat Hospital Pakar Kanak-kanak UKM untuk appointment adik. Dekat sini banyak parking so no worries. Sebelum daftar di Klinik Pakar, kena register dekat Bahagian Pendaftaran dan Hasil terlebih dahulu. Lepas tu baru ke klinik pakar. 

Today's appointment intended to review adik's current development as he previously was still unable to walk unassisted at 18 month. Thank god he started walking at month 19 but we still have concerns as he still did not achieve certain milestone such as talking, pointing fingers, play properly etc. So here we are. All of us went including kakak as we were informed earlier to bring the whole family for the session. 

The doctor did some interview with all of us. She told us this session will take quite some time, maybe around one hour as this is a new case. After the interview ended,  at first the doctor said that she cannot confirm adik has autism but she concluded adik did have the characteristics of an autistic person indeed. But after talking to her specialist, the diagnose is confirmed that adik has autism. How do i feel? Frankly speaking, we came prepared for the worst. Although i was hoping to hear the opposite, considering adik current development i believe the chances are 50/50. Sometimes adik look fine and normal but the other time we worried for him especially his head banging episodes evertime he wanted something or when he is angry and hungry.

So the next move is adik will be referred to audiologist to check if he has hearing problem and adik case will be handled by The CDC aka Child Development Centre after this so the centre will contact as through SMS for the appointment and at the same time we were advised to enroll adik into speach teraphy session with private centre while waiting for his appointment.