I admit to being quite behind with updating on Raiyan’s progress since it is plainly visible from the count-up counter I have put at the bottom of the page that it has been 8 weeks since Raiyan started his therapy and here I am only updating on week 7.
Nevertheless, I hope you readers have the big picture in mind instead of worrying over the small details. You can imagine how much work it takes in helping “recover” our Raiyan and at the same time, how overwhelming it has been with the amazing progress he is making that it really seems like such an impossible feat to be conveying this to everyone on a consistent basis. After having said that though, I will nonetheless still try my best to share his progress stories to an accurate tee. Why else would I be scurrying to find an internet connection now, when I am on transit at Auckland airport for 5 hours? I just HAVE to publish this NOW before I start slipping into a 2 week delay!
This past week since I have last updated have been absolutely magical! Raiyan is starting to manifest a genuine personality and his imagination has gone beyond OUR own imagination in thinking he’d ever be able to do what he does now.
Before we would be so worried about leaving him alone with his thoughts as that would be when he’ll start regressing to his autistic tendencies such as to non-stop obsess over his animals, to stare into mid-air for hours, to be verbally mute or just talk echolalia talk to himself, to never bother to be engaged with anyone else and would be fine to be a recluse in his corner of the house for the whole day, to react violently when we take something away from him, to watch a dvd on repeat over and over, to not want his dinner, to not want to take a shower etc etc etc.
I still remember how difficult it was for Jeff and me to ever really “relax” because subconsciously, we would always be concerned about leaving Raiyan alone because there is always such an inherent need to “entertain” him. This constant worry was fuelled by the fact that the rest of the day when we are at work, we had absolutely no control over what he was doing as well.
But this past week, we are starting to ease into being comfortable and confident about not having to spend every waking minute with him. Somehow this week, his imagination has somewhat “exploded” out of nowhere (so to speak!). Instead of doing what he usually does over and over again, he is starting to do new and different things all of the time AND all on his own initiative.
For example, he found this long Styrofoam thingies (which we had used to pack things with) and first made it into a bridge for his teddy bear “ted”** to walk on. Then, he took some cellotape (with the help of babah of course) and joined them up and pretended they were antler’s ears! Then, he would sit on a mattress with Ted and use the Styrofoam thingies as rowing paddles!
He would happily be doing all this different things on his own throughout the day. There was hardly a point when Jeff and I got our usual worries about not being directly engaged with him :D
He is also utterly and completely aware of his baby sister and baby brother now and is always playing together with Alisha and calling out for her to play with him. Thankfully, Alisha is ALWAYS ready and keen and so Jeff and I can further comfort ourselves in the fact that Alisha can entertain his brother when we are not so up to it! Ha ha! But they have fun and we have so much fun watching them that we end up joining in too!
Though his language still needs a LOT to be worked on, he is still showing fantastic progress as now he is starting to initiate conversation and there were a few times, when there was an actual 2 way conversation with him !Here is a clear illustration of how his understanding of language is at the moment. He was playing with this flash card which is part of his therapy tools and it got slightly dog-eared because he was carrying it everywhere.
So, I said “Raiyan, look what happened? There is a line on the card!”
Raiyan :“Uh-oh, there’s a line on the card? (this is NOT echolalia because he was repeating it whilst UNDERSTANDING what I was saying and he was saying it in a questioning tone too)
Mama: “Whose card is this?”
Raiyan: “It’s K’s card”
Mama: “Oh, K is going to be angry. Do you want K to be angry?”
Raiyan: “No” (with a “scared” tone to his voice)
Mama: “Then put it back. Where did you find it?”
Raiyan: “In the box in the yellow bag. Where’s the yellow bag?”(he still likes to ask us questions as part of the conversation even though he already knows the answer)
Mama: “You tell me. Where’s the yellow bag?”
Raiyan: “In the exercise room!”
Mama: “Yes, in the exercise room! So, can you please put back the card in the box in the yellow bag in the exercise room please?”
Raiyan: “Okay!”
And he did!!!!!!!! And considering that he was bringing the flash card everywhere he went for the past few hours, that was simply amazing!!
Till next week!
**Ted is his new companion, who we initially thought would develop into an obsession or “item of the week” but it hasn’t! He is still able to walk away from Ted when we tell him to!
14 comments:
Well done to Raiyan on his amazing progress!! Keep it up!!
I hope you will not edit or change any of the content of this reply
Response to our-unique-raiyan.blogspot.com
Dear Raiyan’s mother,
I write on behalf of the Child Development Centre, Ministry of Health Brunei Darussalam, as the Administrative Head and Lead Paediatrician. I have more than 17 years experience in Paediatrics and was the person who set up the CDC in 1999. I have a Master of Science in Community Paediatrics from The Institute of Child Health, University College of London and have worked for two years as Clinical Fellow with The Neurodisability Service at the Great Ormond Street Hospital. I am also a member of the Royal College of Paediatrics and Child Health, UK.
Your comments have caused us at the CDC great concern, such that we felt it necessary to discuss them with our Minister of Health, as well as the Deputy Minister. They have instructed me to write to you.
I would much prefer to talk to you personally, and would like to invite you for a person to person discussion. However I understand that you may not want to come to CDC again.
First of all, I would like to extend our Child Development Team’s apologies to you and to say how sorry we are that your experience with us has not been up to your expectations. I personally have not seen Raiyan because I was leaving for the UK in mid 2005 and in any case the team was liaising directly with the Paediatric Specialist from the RIPAS Hospital who referred you to the CDC. However, I have read his medical records and have also done an internal CDC inquiry with most of the professionals who have been involved in his care from the time Raiyan was referred. I have also had a discussion with the Specialist Paediatrican who referred Raiyan.
I summarise my findings as follows:
Raiyan was referred to us by the Specialist Paediatrician on 2 July 2005
He was then seen by our Clinical Psychologist, Speech and Language Therapist and Occupational Therapist on 9 July 2005 during a joint assessment session.
Our psychological assessment report showed that Raiyan scored in the mild to moderately autistic range using the Childhood Autism Rating Scale, but he did not meet the full requirement for the diagnosis of an Autistic Disorder according to the Diagnostic Statistical Manual –IV. Our Speech and Language Therapist (SLT) and Occupational Therapist (OT) also observed that he did have subtle features suggestive of Autistic Spectrum Disorder. We thus planned to review him again. A hearing assessment was done but this was initially inconclusive because Raiyan’s cooperation could not be sustained but was later shown to be normal. A psychological reassessment was planned for 6 to 12 months time.
Owing to our staff shortage, another of our SLT saw Raiyan and provided him with weekly speech and language therapy. Following this, according to the SLT’s report on 12 August 2006 and the history given then by you, he had made excellent progress, and was also doing well in academically. Thus our SLT then felt that it was appropriate to discharge him from the SLT clinic. We did not see Raiyan again at the CDC after this because he had the excellent opportunity to go with you overseas for a year. Therefore the initial plan to do the psychological reassessment could not be carried out.
When you returned to Brunei, you saw the same Specialist Paediatrician again in October 2007, this time because his teacher was concerned that Raiyan noted that he tended to speak in a loud voice. She then requested a repeat hearing test and spoke to me about her own suspicions that Raiyan may have autism, and requested that I see Raiyan in my clinic. I agreed immediately and an appointment was made for me to see Raiyan on 6 November 2007. It was most unfortunate that Raiyan could not come to this appointment. I gather it was December that you saw K at ISB who then diagnosed Raiyan to be autistic.
It is often difficult to make a diagnosis of Autistic Spectrum Disorder (ASD) in very young children, especially if the features are subtle and the child is high functioning. Many professionals in the field of child neurodevelopment would hesitate before making such a diagnosis on such young children too quickly because this is a label that these children will carry for the rest of their lives. On the other hand, it is often easier to make a diagnosis of ASD when the child is older because the available developmental history is longer, and several features will have become more apparent, thus making the diagnostic process more straightforward. Many studies have shown that quite a number of children who have been thought of as only having delayed speech and language delay initially eventually fulfill the criteria for ASD later. Even when I was working at the GOS Hospital, our team of expert and very experienced Neurodevelopmental Paediatricians, Clinical Psychologists, Speech and Language Therapists had to see some children several times in different settings including the home and school/nursery, and do various tests before committing ourselves to whether the child has ASD or not. This is because we need to gather as much evidence as possible when telling the parents of such a potentially overwhelming diagnosis. It is also important that the diagnosis be made by a team of professionals (i.e. not just one psychologist) which includes a paediatrician in order that any co-existing medical conditions be diagnosed and treated accordingly and also to exclude any conditions that may have some similar features as ASD such as Retts Syndrome, Landau-Kleffner Syndrome, severe learning disability, Tourette’s Syndrome etc.
Although your blog was very critical of the CDC, I am still grateful for your comments. Our internal inquiry into our Raiyan’s management has been useful in that a few issues came to light. Firstly, our usual Modus Operandi which is to work as a multidisciplinary team needs to be further strengthened. The second SLT ideally should have consulted the rest of the team before discharging Raiyan but unfortunately she has now left the CDC, making it difficult for us to know precisely why she did not. It would be unfair for us to criticize someone who is not available to have her say. In any case, I am not sure whether the other CDC Team members would have had an opportunity to review Raiyan, because you had to leave for the US after that. Secondly, we clearly need more professionals. Perhaps we could have reassessed Raiyan earlier, rather than wait for 12 months but the fact that we only had one Clinical Psychologist at the time did not make this possible. She was also the only Clinical Psychologist for children throughout the country because our other two psychologists were still overseas undergoing further studies.
I am not trying to make excuses for our shortcomings in managing and diagnosing Raiyan, but only to state the facts as they stand.
Our Child Development Team has diagnosed more than 200 children with ASD in recent years. In addition to being committed to making a diagnosis as early as possible, our doctors are also involved in child development screening in order to detect developmental problems as early as possible.
Another important information for parents is that the CDC’s philosophy is to provide a holistic approach in managing all the children that we see. This is why our team consists of doctors (Paediatricians and a Child Psychiatrist), Clinical Psychologists (we now have 2), SLTs, OTs, Physiotherapists, Early Development Program Teachers, Nurses and a Medical Social Worker. The therapies available for children with ASD are Speech and Language Therapy, Occupational Therapy and Sensory Integration. For the children with ASD, the therapy is one to one, because the children often do best in such an environment. We are also able to offer advice on the medical aspects, Behaviour Management, Parenting Skills and Social Support, and of course when indicated prescribe medications that some children may require. You may already know that ASD can sometimes co-exist with other conditions such as Attention Deficit Hyperactivity Disorder for example. Our goal is to be able to provide parents with the whole package of intervention and support.
We know how useful Applied Behaviour Analysis (ABA) can be for some children. However, it does not necessarily work for all of them. We are sincerely happy for you that it has been extremely successful for Raiyan. Of course, when we are able, we will be sending some of our professionals for training in ABA and the other therapies now available. We keep up to date with the recent developments in the field and are aware of our training needs.
The Ministry of Health (MOH) has always been very supportive and keen to improve the services we provide. Several strategies have been identified in order to achieve this goal. This includes increasing our professional staff and skills as well as improving our facilities.
Our Child Development Team also believes that parents should be able to decide for themselves as to how to manage their own child. This decision however, must be an informed one. It is our duty to inform parents of the support and help available in the country pertaining to their child’s needs. As you say, you are surprised that as a governmental body, we refer children with ASD to SMARTER. We do not. When we have diagnosed a child with ASD, we then inform them of what we can offer and what is available in Brunei, and until recently the most widely known NGO for ASD children and their parents is SMARTER. We have enjoyed a long and excellent relationship with SMARTER and in fact it was the CDC that got the earlier SMARTER parents together to form their organization. Being such highly motivated and dedicated parents that they are, SMARTER simply took off from there. SMARTER on the other hand respects our ability to diagnose autism and reconfirm the diagnosis where necessary.
The founding members of Learning Ladders have come to CDC to introduce their organization, and so we do know of them. We are uneasy however, that they rely only on one psychologist to diagnose ASD, without any medical input from an experienced paediatrician. It also appears that when the psychologist flies in, he/she is content to make the diagnosis based on an assessment done on the single visit to Brunei. Or does he/she fly back and forth, to reassess? What does that then mean for parents in terms of costs? And are these psychologists, speech and language pathologists etc that are offering their services here aware that in order to practice here, they need to register with the Brunei Medical Board? And have they considered getting work permits? Please be informed that these were some of the issues raised by the top executive officials of the MOH during the CDC’s discussion with them.
Lastly, however, the CDC would like to congratulate you for being such a good mother to Raiyan, and to say keep up your excellent work with him. He is so fortunate to have your dedication and commitment. Well done. We are glad that ABA worked for you. As I mentioned earlier, I would much prefer to have met you personally to discuss all of the above. So please consider the invitation to meet me and/or our Child Development Team as an open one. We will always be pleased to see you.
Wasalam,
Dr M
Dear Dr M
Thank you for your comment. Apologies for not having published your comment earlier but I have actually been out of the country on official duty for the last week and have not been able to check the blog.
My husband and I would like to accept your invitation to meet with you and/or the Child Development Team and will find a way to contact you soon to make an appointment. We would prefer to discuss Raiyan's specific clinical history at CDC personally with you as some of the points you have mentioned are surprisingly new to us.
We also wish to take the opportunity then to highlight some factual inaccuracies in the case management history of Raiyan and series of events as you have outlined.
We fully appreciate your attempts at clarifying Raiyan's case but would have preferred the clinical aspects of it to be divulged only with parental consent.
Nevertheless, we are happy to hear that you have taken measures to further improve your organisation and services.
I sincerely apologise if you have construed the contents of the blog as having been so critical of CDC. This has never been my intention. Our prime intention is to increase much needed awareness on autism and share true stories of our family's journey with Raiyan through autism with a simple message of hope.
We have had positive responses from other families of children with autism who, with parental expectations shattered upon diagnosis, much appreciate the hope that has been conveyed.
Looking forward to discussing further with you.
Wassalam.
Dear Dr. M,
I noticed that you had posted the same comment about Raiyan's case three separate times, once here in my blog and twice under two separate posts on the learning ladders blogspot. I assume you felt the need to did this to ensure everyone gets a chance to read what you and your organisation have to say and by posting it 3 times, it would probably raise the chances of that happening.
Since it seems like you are very deteremined to get as many readers as you can, I just wanted to ask if you would actually want me to publish your comment as a post on my blog because as it stands, it is still in the comments page, where not all readers necessarily click on to read. Just to be clear, I will only publish your comment and not any other comment that are also on the same page.
I have no problems at all about doing this but I would like to seek your consent first on whether or not you would be comfortable with me doing it.
Thank you and wassalam,
Riana
Bissmillah Hirrahman Nirrahim,
Assalamulaikum to all muslim readers and especially to pweshesw mama and your dedicated strong supporter
Please allow me to say a few words in this posting and if you feel it is inappropriate i can understand if you refuse to post it. Also please let me say it in bahasa Brunei supaya apa jua KEAIBAN yang terdapat didalam Negara Brunei yang hamba cintai ini inda jua luan terdedah kepada dunia luar, membari malu bah ketani orang Brunei sama-sama sendiri bertelingkah dan tunjuk menunjuk sesama sendiri inda baik bah. Ketani orang Brunei ani ada awar galatnya mengkali. Apatah lagi abiskita orang berpelajaran tinggi, Profesional, Pegawai Kerajaan yang memegang Jawatan Tinggi tapi menunjuk-menunjuk, bersalah-salahan, memalukan Orang Brunei sendiri, camana tu inda hamba faham bah. Apa-apa jua yang ketani inda puas hati atu bawa berunding, mun kan menagur atu jangan dapan orang ramai bah inda manis nya ketani orang Brunei. Apa rasanya kana tagur masa berkeraja dapan kawan dan rakan keraja ketani, malu ketani kan, Tapi mun kana tagur dalam bilik sendiri-sendiri baik jua rasanya.
Ia tah Hamba ani Yang Di Pertua Persatuan SMARTER terpaksa menyampuk dalam hal abis kita ani pasal amba dimaklumkan nama SMARTER terbawa-bawa bah. Kami ani ganya sekadar berusaha membuat apa yang mampu kami lakukan semata-mata untuk anak-anak kami saja. Hamba pun maklum bahawa dari komen-komen, semua program yang abis amba buat diSMARTER atu memang KURANG EFEKTIF atau INDA EFEKTIF dan TERLALU "SIMPLE' dan "INFERIOR" DARI PROGRAM ABISKITA.
Akan tetapi atu tah saja yang kami mampu maklum saja kami ani kumpulan orang-orang yang kurang pandai, inda berapa bepelajaran, kurang pendapatan. WE are doing what we can with what we have.
Kan halnya masa amba memulakan Persatuan SMARTER banyak pulang perkara yang kurang dan inda ada. MENANGIS TUA PULANG KU oleh nya tapi terpaksa jua hamba menerima amanah Allah SWT .
Kan disalahkan pihak-pihak tertentu nada jua hasilnya. TIMBUL DUGAL ADA, NAIK DARAH ADA, NAIK MARAH ADA, LURUH RAMBUT ADA JUA tapi anak hamba masih ada Autisma.
Jadi hamba bertekad untuk membantu pihak tertentu menampung kekurangan dengan apa jua cara yang boleh, dengan secara langsung membantiu anak amba jua.
Kami yakin dan percaya sepenuhnya kepada kemampuan Dr M, all CDC Team dan Kementerian Kesihatan dan terus membuat kesepakatan untuk berkerjasama dan bantu membantu sesama sendiri. Abis dia pun ganya dapat membuat mengikut apa yang ada pada masa atu, bukan Autism saja kan diorang tangani banyak lagi isu-isu lain yang berkaitan dengan perkembangan anak-anak diBrunei ani. To be fair they have done a good job with the limited resources and we perindungan sepatutnya bantu tah abis dia atu bukan ganya kan berharap arah kerajaan menyediakan segala-galanya apatah sumbangan kitani kenegara. J.F Kennedy said ”DON’T ASK WHAT YOUR COUNTRY CAN DO FOR YOU, INSTEAD ASK WHAT YOU CAN DO FOR YOUR COUNTRY”
Bukan diBrunei saja segala-galanya kurang diseluruh dunia pun sama jua bah. Ia tah sebagai orang tua hamba merayu arah abiskita supaya ubaya-ubaya apa yang ditulis atu walaupun sekadar bercerita jangan tah samapai menjatuhkan maruah orang ketani sendiri, Negara Brunei dan Kerajaan Kebawah Duli Yang Maha Mulia, inda bisai bah “MACAM BERLUDAH KELANGIT JATUH JUA KA MUKA SENDIRI” lain halnya kalau abiskita bukan orang Brunei.
Iatah amba minta atu pun mun abiskit dapat menerima terutama orang brunei lain yang memberi komen-komen atu ubaya-ubaya tah dunia luar meliat dan memerhatikan ketani kali ah.
Nya Peribahasa Brunei jangan pakai resam ayam bah betalur sebiji riuh sekampung. Kami diSMARTER ganya kan membuat keraja kami mengasuh membimbing anak-anak kami dan memberi kesedaran arah orang ramai diBrunei saja supaya mereka lebih faham dan dapat menerima anak-anak kami.
Jadi hamba dengan rendah diri memohon dari abiskita semua supaya jagatah nama Baik Negara Brunei Darussalam yang ketani sama-sama cintai ani. Hamba jua memohon agar jangan tah SMARTER dibawa-bawa dalam blog abiskita, “Just leave us alone to do our bit which is simplistic, ineffective, inferior and substandard compare to your miraculous program”.
SMARTER Brunei existence is to compliment, cooperate, and support the government to enhance services for Autism Spectrum Disorder. This can only be achieve if we focus our joint effort on building a united front. WE FOCUS ON WHAT WE CAN DO TOGETHER AND NOT WHAT SHOULD HAVE BEEN DONE, WE JUST WANT TO MOVE FORWARD. Apa-apa yang terjadi ani ada sebabnya, kitani mesti menerima dengan rela dan redha.
Akhirnya hamba menyusun sepuluh jari memohon maaf kepada pweshesw mama and your dedicated strong supporter jika ada kata-kata yang menyingung perasaan, terkasar bahasa sama ada disenghaja atau tidak senghaja. Tahniah kepada pweshesw mama diatas kejayaan menangani Autisma Raiyan anak abiskita hamba berdoa agar kejayaan itu berterusan dan mencapai ketahap yang abiskita harap-harapkan.
Hamba jua sedar ada jua karang kana bari komen-komen yang negative terhadap pandangan ani tapi hamba menerima dengan ikhlas dan hati terbuka mudah-mudahan abiskita mendapat rahmat dan ganjaran dari Allah SWT, Amin.
Kepada your dedicated strong supporter ingat ketani anak Brunei jaga nama baik Brunei terutama dalam era Internet ani. Sekali lagi hamba memohon maaf arah semua jika ada yang kurang sopan dari hamba.
Sekian Terima kaseh
Malai Hj Abdullah Hj Malai Othman
Dear Dr. M,
I am Raiyan’s grand father. Please allow me to respond to your comment.
With the benefit of hindsight it is now obvious that opportunity to diagnose Raiyan’s autism spectrum disorder was missed when Raiyan was two years old. Unfortunately time is irreversible. In our view if someone had shown serious concern on Raiyan’s future rather than opting to wait for time to tell, a huge difference could have been made. A programme could have been introduced then into Raiyan’s learning curve which by now may make him more able in coping with his daily life. One can only say it is very sad indeed to allow things to happen this way.
You said this is because “many professionals in the field of child neurodevelopment would hesitate before making such a diagnosis on such young children too quickly because this is a label that these children will carry for the rest of their lives”.
I find this very difficult to comprehend. You put weight more on fear towards misdiagnosis of any conditions that may have similar features to ASD such as Retts Syndrome, Landau-Kleffner Syndrome, severe learning disability, Tourette’s Syndrome etc. Even if this is the case then the parents ought to be made to understand what the consequence of making such misdiagnosis to the child would be. Is the damage going to be greater than the damage in failing to start treatment at an early age? As you very well know a child’s brain development is crucial within the first five years from birth. If the first five years are missed simply to be assured in making an accurate decision then the person who will lose is the child.
You argued that “it is often easier to make a diagnosis of ASD when the child is older because the available developmental history is longer, and several features will have become more apparent, thus making the diagnostic process more straightforward. Many studies have shown that quite a number of children who have been thought of as only having delayed speech and language delay initially eventually fulfill the criteria for ASD later”. Yes I do agree with you if time is irrelevant but time don’t wait. By then it can be or in many cases such diagnosis are already too late.
You said: her blog was very critical of the CDC,
Is this true? What is she critical about? Is narrating her own experience amounting to making unfair criticism? Even if she did make a direct or indirect criticism, does that make her a bad person? Is making open criticism a taboo in nation building? You said you are grateful but at the same time perturbed to the point of bringing the criticism to the attention of your Minister and D Minister.
In your opinion you said ‘perhaps you could have reassessed Raiyan earlier, rather than wait for 12 months but the fact that we only had one Clinical Psychologist at the time did not make this possible’. This is not a question of “perhaps”. This is a classic error of judgment in the decision making process when deciding the future of a two year old boy. Of course it was not obvious then but the consequence of that decision has an impact on Raiyan for the rest of his life.
Following this tragic experience that is why my daughter feels very strongly THAT AWARENESS AMONG PARENTS REGARDING ASD IS VERY IMPORTANT BECAUSE DECISION ON MAKING DIAGNOSIS SHOULD NOT BE THE MONOPOLY OF ONE TEAM OF EXPERTS. THEIR MULTIPLICITY MAY BE GOOD IN PRODUCING ACCURATE DIAGNOSIS BUT IF THAT DIAGNOSIS IS DELAYED BY ONE OR TWO YEARS THE EFFECTIVENESS OF THAT DIAGNOSIS IS QUESTIONABLE.
You said you are “not trying to make excuses for our shortcomings in managing and diagnosing Raiyan, but only to state the facts as they stand”.
Yes, you rightly said so. Shortcomings do happens everywhere. But it is very important that such shortcomings are recognized. Thus it is equally important that misdiagnosis at the very crucial age of two can be avoided for the sake of the future of any potential ASD child.
We are not disputing your philosophy in providing a holistic approach in managing all the children that you see in which you have a “team consists of doctors (Paediatricians and a Child Psychiatrist), Clinical Psychologists (we now have 2), SLTs, OTs, Physiotherapists, Early Development Program Teachers, Nurses and a Medical Social Worker. The therapies available for children with ASD are Speech and Language Therapy, Occupational Therapy and Sensory Integration”.
This is a very highly respectable effort in dealing with ASD children. Please do carry on. BUT at the same time there should also be options openly available. The responsibility of handling this problem must not rest on one agency alone. Second, third or more opinions must be openly available for the sake of these children. Decision making must not rest on one team of experts only. When my daughter shared her experience in going for other options in particular the ABA approach, she had no intention to offend those who are already entrenched in your holistic approach. The availability of options take place in products and services we purchases. Parents of children with ASD are from different walks of life. Their skills and professional background are likely to be different and so each of them may have different perceptions and understanding of ASD and thus their own approaches in handling their ASD children are expected to be different. Since CDC and SMARTER have been around all these years it is their services being heavily depended upon. Everyone should be grateful for that. This however should not mean that an emergence of another group with a different approach to dealing with the same problem be seen as a rival or competitor. No one is competing for market share. My daughter is not marketing a competitive brand but merely at her own time sincerely wanting to share her new experience in handling Raiyan. She had no intention what so ever to cause offence to anyone. She never said any one approach is superior to another. She merely says that the approach she adopted through ABA is highly effective for Raiyan. It is in her view that if it works for Raiyan may be there are other parents out there interested with this approach. If they do they should have the right to exercise the option to choose this approach. If this approach is disapproved by some it is also fine as no one is being coerced into taking this option.
Even you yourself said that you “know how useful Applied Behaviour Analysis (ABA) can be for some children. However, it does not necessarily work for all of them. We are sincerely happy for you that it has been extremely successful for Raiyan”.
YES, ABA is very useful but no one can ever claim that it works for all children. To deny any child from ABA or to predetermine that it does not work for a child would be a willful act of uncaring. Would a parent of ASD child with knowledge or exposure to ABA be so unkind and uncaring?
In conclusion please do understand that my daughter’s blog is simply a narrative of her own experience. Her blog is never prescriptive. Please look at the issue of handling ASD children objectively for their benefit in general. Her emergence and the emergence of her choice of approach in handling her ASD child should not be viewed with suspicion. There is a potential for a large number of parents with ASD children in the years to come that could benefit from her experience. If she succeeds in instilling this awareness then she has done a really good job. CDC and SMARTER each have their own strength and followings. This is not an issue of her trying to take their “market share” of parents with ASD children as she and what she did is not in the business of profit making. The crucial factor for those who would be an ASD child is the speed of diagnosis. Who ever can make a diagnosis at an earlier age irrespective of what philosophy or approach is adopted is the one who will “save” the said child from potential long term impairment in brain development.
HAJI AJI
11 March 2008
Bissmillah Hirrahman Nirrahim,
Assalamulaikum Yang Di Pertua Persatuan SMARTER,
For your information, pada zaman moden dan teknologi canggih ini, ramai orang di dunia luar sudah boleh berbahasa Melayu samada bangsa Cina, India, Eropah, Amerika dan Latin Amerika.
Setelah di teliti semua isi kandungan Posting Pweshes Mama, saya dapati hanya puji-pujian diberi kepada Persatuan SMARTER.
Pweshes Mama juga tidak pernah membanding-bandingkan program ABA yang digunakannya dengan program-program yang terdapat di SMARTER. Dia juga tidak ada mengatakan yang program digunakan SMARTER adalah INFERIOR.
Alhamdulillah, negara Brunei mempunyai rakyat dan juga ibu bapa yang berpendidikan tinggi yang boleh menggunakan ilmu pengetahuan mereka untuk sama-sama membangun negara Bunei. Maka tidak sia-sia lah wang yang dikeluarkan oleh kerajaan dan ibu bapa mereka untuk membiayai pelajaran mereka.
Ibu-bapa sebeginilah patut di sokong kerana mereka dapat memberikan "kritikan yang membangun" Brunei. Mereka bukanlah "menunjuk-nunjuk, bersalah-salahan atau memalukan Orang Brunei sendiri" tetapi bukankah lebih bagus anak bangsa sendiri yang memberi teguran daripada dunia luar.
JF Kennedy berkata,"DON'T ASK WHAT YOUR COUNTRY CAN DO FOR YOU, BUT WHAT YOU CAN DO FOR YOUR COUNTRY"
JF Kennedy membuat ucapan ini kepada askar-askar Amerika semasa perang Vietnam. Adakah ini bermakna kita harus berperang?
Sudah tentunya negara Brunei telah menyediakan berbagai bentuk kemudahan untuk memajukan dan membantu rakyatnya. Tetapi, jika kemudahan yang disediakan tidak dijalankan dengan betul oleh mereka yang di AMANAHkan untuk menjalankannya, maka hanya rakyat Brunei sendiri yang dapat memberi "teguran yang membangun".
Hal ini adalah lebih mustahak jika ia berhubung kait dengan kesihatan dan pendidikan kanak-kanak terutama sekali kanak-kanak Autisma dan yang berkeperluan khas.
Kanak-kanak inilah "Brunei's Future".
Jika sebuah negara kecil seperti Qatar dapat mengeluarkan resolusi "World Autism Awareness Day" semasa di UN untuk membantu kanak-kanak Autisma, sudah tentu negara kecil seperti Brunei juga boleh melakukan yang lebih bagus atau setandingnya.
Perkara terakhir sekali, kepada Dr M, jangan lah sewenang-wenangnya menyalahkan orang lain keatas kesilapan kamu sendiri. Seperti yang saya baca di blog organisasi Learning Ladders, "You must be responsible for your staffs actions" bahkan anda sendiri telah melakukan satu "MISCONDUCT" iaitu mengeluarkan dan memaparkan "CONFIDENTIAL PATIENT REPORT" terutama sekali "of a minor without parental CONSENT".Dan juga anda telah mengeluarkan satu "threat" bila anda menulis "Please do not remove this or else we have to take more drastic action"
Adakah ini caranya seorang Pegawai Tinggi Kerajaan "conduct herself"?
Pweshes Mama dan mereka yang sealiran minda dengannya cuma mahu "create Awareness on Autism", supaya apa pun kekurangan yang ada di Brunei akan dapat di tambah dan diperbaiki.
But it does not mean that you can "threaten" them into keeping quiet. Is this to be a trend?
This is only one parent.....how many parents have you misguided over the years?
I urge the relevant authorities or whichever Ministry look deeply into this matter.
Help Parents like Pweshes Mama get the message across.
Just look at your closest neighbor Singapore or Malaysia where Early Diagnosis and Early Intervention is no longer an issue. It is already implemented or have been running for a few years now.
Time is ticking for these children.
Wassalam,
World Autism Observer
it is unfortunate that a well intentioned movement to create more awareness about autism has turned into a 'pass the buck' exercise. I don't believe pweshes mama had any intention to create waves or controversy but rather just to share her day to day experiences with Raiyan. if the authorities are feeling the heat, there must be a reason for it,yes?
a friend.
an observer.
Dear bloggers,
It is unfortunate that what has been written on this blog has been misconstrued and taken out of context and blown out of proportion by several parties.
This blog is about a mother’s personal journey with her son who has autism. It is about the heartache and joys that families living with autism experience. It was never intended to offend anybody or polarize society by making them die-hard supporters of x or y.
More importantly, that with the devastating diagnosis of Autism there is HOPE.
THERE IS HOPE
BUT TIME IS OF THE ESSENCE
However, parents of children affected with autism needs encouragement, help and support. Raising a child with autism can be a HERCULEAN task and one that is stressful emotionally and financially.
Unnecessary threats, criticism and derogatory remarks towards these parents only add to that stress. My heart goes out to you pweshesw mum. Be strong!
This unfortunate, sorry affair should have never happened.
Let us not forget these beautiful children because they hold on to every promise even the uncertain, so let us all
…………improve what needs to be improved
…………provide what needs to be provided
An African proverb said:
It takes a whole village to raise a child
Well it’s gonna take a whole nation to raise a special needs child.
I hope that in the future more societies will be set up to cater to the needs of all children with various disability or disorder.
A child is...
A butterfly in the wind,
Some can fly higher than others;
but each one flies the best it can.
Each one is different!
Each one is special!
Each one is beautiful!
anonymous
Yours sincerely,
Sharina Yunus
Obviously comments and opinions expressed will not cure autism. They were never posted as remedies.
The blog is intended TO INCREASE AWARENESS REGARDING AUTISM IN PARTICULAR AMONG PARENTS OF CHILDREN WITH ASD. We simply want them to be aware and conscious of the fact the if they have a child with ASD it is NOT A HOPELESS situation. They can still do something to help children with ASD to be as near normal as possible. The success rate in doing this Insya Allah is likely to be much better if diagnosis is made much earlier like about the age of two. This line of thinking is in contrast with those who are of the opinion that if a child is with ASD there is nothing that can be done about it irrespective whether diagnosis is done at an early age or not. They do not feel strongly about making early diagnosis. If this is their choice it is fine but “Allah melarang kita dari berputus asa dari rahmatnya”
It is recognised and understood that CDC have a team of experts and have done all what they could. However the team requires a prolong period to conduct their investigation. What is being called for is to bring awareness of the availability of other options for those parents of children with ASD who are very particular about seeking early diagnosis.
If all parents are AWARE of this, then the objective of this blog is achieved.
Raiyan's Grand Father
Dear scrapper holic, thanks for your support!! Will keep up the good work!! :D
Dear Dr M, Administrative Head and Lead Paediatrician, information of patients should be made confidential.
As a member of the Royal College of Paediatrics you should know better than to breach confidentiality. I shall be forwarding this to the Royal College.
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