自閉症孩子經過訓練，情況仍會繼續退化嗎？有人可以解答嗎？

Dr.T

My concern is both of the tests that you mentioned do not have HK norm and your child is now compared with US kids. My experience with Stanford-Binet (we don't have a Stanford-Binet HK norm) informs me that HK kids often do less satisfactory on langauge items when comparing with US kids.

[quote]
sjmama 寫道:
1. ...he used the TELD-III  to assess my son's language skill, the same tool was used by the ST one year ago
2. ...For his IQ, the Edu Psy used WPPSI-III.
quote]

sjmama

Dear Dr. T,
Thank you very much for your comments!

May I ask in my son's case (he can only speak English, though his language development is delayed), which tool will be better to assess his situation?
Should he do another assessment?

Many thanks,
sjmama

Dr.T

Dear sjmama,

Obviously I have overlooked your other responses as someone had mentioned to you about the problem of using US norm. My apology.

1. WPPSI should have a non-verbal scale and my guess is your son might do better on non-verbal items than verbal tasks. Check his report about this and if his non-verbal performance is closed to his age peers, I think it's a good sign already.

2. The purpose of further testing (if any) is to clarify the true learning potential of your son. If such kind of information can be located in his current report, then it might not be necessary for you to do that again. However, if you think that the report doesn't provide you enough information on the child except a label, then a third person's opinion might be sought.

BTW, I'm not sure which special schools you've been visited. But according to my limited knowledge English speaking special schools are rare and all (in fact we are talking about 2 only) of them are catered for kids with relatively severe learning problems.

Honestly English speaking kids with borderline/low average intelligence, not necessary mental handicap, often have a hard time finding suitable schools for them in HK. That's the problem of demand and supply...even Chinese speaking special schools have a hard time to survive nowsdays.

sjmama 寫道:
1. May I ask in my son's case (he can only speak English, though his language development is delayed), which tool will be better to assess his situation?
2. Should he do another assessment?

mrsphcheung

Dear all,
I have a hard time visiting the children assessment centre at Duchess of Kent Children's Hospital today.  The doctor whom I visit is a consultant.  She says that we can't do anything for our delayed children.  Although we have attempted various kinds of therapies, the results are beyond us.  Actually, nothing can be done to improve their learning disability!!!!  It seems that our children are destined to be the weakest minority in the society.  I feel so humilitated and helpless.  Frankly speaking, I really don't like those medical doctors from government hospitals.  Taxpayers' money is used to hire such kind of ruthless professionals!!!        :cry:  :cry:

mickeyma

Believe in yourself! Don't believe in Her! You see the progress of your son, right? You see the sucessful cases here, right? It is very very important how you think of your son. If you think he is smart, then he will be smart. If you think he is stupid, then he will be stupid. I think Dr. T would have different opinion than this so called professional in Government hospital or?

You should read books from Glenn Doman and 七田真。They could be found in librabry.

hinhinmummy

mrsphcheung

我都係在大口環度做評估, 當初個醫生話軒軒係自閉症, 還要講到好嚴重果隻, 我覺得, 佢地講的野好官腔, 依書直說, 不識轉彎, even 政府的st都係.

好似有次, 個st拿架小巴比軒軒, 問佢mug野黎? 軒軒答小巴, 你們話有無錯呀? 甘果架係小巴wor, 但佢係張form度話錯, remarks佢答小巴.

佢要的model answer係車車, 而不係小巴.

姑勿論佢地點講都好, 我們自己會知道個仔有無進展, 佢地的能力去到邊度, 我不望軒軒出人頭地, 只望佢能夠長大後融入社會, 能自力更生, 我已經好滿足!

香港的教育融合不到軒軒的話, 我會比佢去加拿大讀書.  作為一個納稅人, 我真的對政府十分之失望.  原來納稅人的錢就用作呢班不知所謂的st, 醫生, 呃綜緩的人身上, 而稅款有幾多真係用作幫助真正有需要的人身人?

思佳媽咪

Dear Mrs Cheung

I also had a bad experience in Government Assessment Centre 10 years ago.  My son was assessed as MR (IQ below 70) in the 1st assessment.  I was told that his IQ score will never change and that he need to study in special school.  Though having a harsh time in the past years, my son finally overcomes the difficulties.  He is studying happily in a normal secondary school.  He may not be a smart kid, may still have learning problems.  However, he gains confidence and feels he is a normal person.  I also doubted why private therapists always commented  he has great potentials to develop, whereas government professionals said he is hopeless!

mrsphcheung

Dear 思佳媽咪, hinhinmummy & mickeyma,
Thank you very much for your encouragement.  All of you here feel my pain.  As my child will become five by the end of March, I must work very very hard to train him, e.g. st, ot, social skill, sensory integration and private tutorials.  Whenever I know that a training course is useful, I don't mind travelling for more than one hour to attend the course.  I try to visit different professionals and seminars to get more information to help my child.  I do believe that training is important.  My hard work is worth.  My child has improved a lot indeed --- he has speech delay for 6 months right now, no significant delay in fine motor and gross motor skill.  However, he still needs to improve his social skill and attention span.  

I really hate the ruthless lady medical consultant of DKCH, just wish that I won't meet her any more.  As parents of less able children, we have to rely on ourselves but not those so-called professionals.

Wish our children making great improvement in the future.

sjmama

Dear All,

Forget about those government bureaucratic tones.  Hong Kong is at least 30 years behind western civilized countries in terms of special needs education.  This is shared by our therapists who are attending to my kid.  I am quite shocked by the ignorance of local educators, medical professionals, and government officials as to the knowledge of ASD, ADHD, etc.  Despite its cosmopolitan outlook, Hong Kong is decades behind.  Our kid's class teacher, who is a Canadian, is far more knowledgeable about autistic disorders than many of the medical professionals here.  This sounds just like common sense to her.  She has only a university degree, a humble kindergarten teacher.
We all have kids having various kinds of difficulties to various degrees.  This we all know, far better than others.  But why those government doctors not speak in more human and empathetic language?  Who knows what will happen to these kids?  They all have potentials to do better.  Why not give them more chance? Why....
Well, we all know that this is Hong Kong.

Siu_Ming
(I am using my wife's account.  Sorry! But she is right next to me.)

Dr.T

I've spent some years in UK and honestly situation is not much better than here (and I'd consider it as one of the "western civilized countries :wink: " so HK is not that bad in that sense.

I think it's the universal attitude (and problem) of people working in a bureaucratic system that makes us suffer all the time and that's why we need to learn more so that we can fight for our kids. Sorry I'm not a parent with special kids but I have been working in the field for too long...

Siu_Ming 寫道:
... Hong Kong is at least 30 years behind western civilized countries in terms of special needs education  

ALAL

Dr T,
But I believe that our education system is 30 years behind the American and European ones in accepting special children. Am I correct?

SLI

ALAL,

Our education system derived from UK and more oriented towards career training and preparation to suit the labor market , than to develop individuals in their particular potentials.

As a matter of fact, we have been paying high tax amount indirectly ( think about the living costs in buying or renting property in HK) and we should demand for some better system than this at the present . The education system only suits the normal 80% and ignore the special needs of both ends ( those fall behind or advanced ahead).

Politically the Govt. would divert resources soon to try develop gifted under pressure of surrounding areas, but for the special needs , this is not very promising in near future.

To answer to topic question that if austic kids would continue to fall behind after training , it would depend upon if the training is proper or suit the kid or not . This seems saying nothing , but according to the successful cases trained by Glenn Doman's approach in the last 50 years, the answer is NO since they have tailor-make the training program to fit individual's needs and check for their progress to make any necessary changes. For more details, pls refer to www.iahp.org .

SLI   

Dr.T

Depending on which part of the US & Europe you are talking about. My motto is 外國的月亮不一定圓 though I do admit that we are lacking behind in quite a number of areas in special education, even when comparing with Taiwan. But I think bucreaucrats are the real problem as they are the main resistants of changes. Look at our special school system- why they still exist seperately as independ schools rather than integrating into the mainstream? People will loose jobs !! so they remain, most or less the same as they were 20+ years ago.

But our discussion seems to divert from the original one propsed by sjmama already...sorry I'm one of the culprits. May be we'd better stick with that...

ALAL 寫道:
But I believe that our education system is 30 years behind the American and European ones in accepting special children. Am I correct?

pamam

I have similar experience with the govt bodies. My son's PT is very subjective and opinionated. Each time I took my son there, she would say lots of negative and discouraging things. My son was lucky enough to get into a normal school P.1, she wasn't happy about it and kept asking me how did he do at school, I told her he has some problems in the first term but he has improved a lot in the second term. You know what she said, that's impossible, your son is very 'delayed', his school may ask him to leave soon or later.

My hushand and I have decided to quit there and go private PT, anyone can give me some advice?

I agree HK's education system is years behind, one of the most important factors is the attitude of the people who runs the system(i.e. the educators, teachers, principals). If they are more sympathetic to our children, actually what I want to use is the Chinese phrase 'yao kau mo lui', they know very well that our sons shouldn't go to special schools, they should educate their students to learn how to accept other people who are different or weaker.

Most HK people are still very ignorant about Autism. Some of them still think it's the fault of parents, like we didn't stimulate them enough when they were babies, etc. We have to  face these people from time to time, I am lucky to find this forum, I felt a lot better after getting  it out of my chest. Thank you!

稚言治語

看了之前好幾段留言，有少少感受想表達。

從事兒童工作多年，我很明白幾位家長的感受。孩子有障礙已經夠辛苦了，不單要付出更多的時間心血，很多時還會遭人白眼，有時甚至連家人也不體諒。尋求專業協助郤被冷言對待，有些更一盤冷水照頭淋，心裡必定會很難過。

我想說句公道話，有很多在醫院、政府工作的專家也是很好的。他們盡心盡力工作，希望能將自己所學的回饋社會。但現時因很多行政考慮，例如在醫管局需每月"交quota"，不夠數的話會很慘:cry:﹗故此，有些同工可能因為工作太忙的關係，進修的時間少了。在多重壓力之下，有時心情也難免焦躁。當然，我不排除樹大有枯枝，但一概而論對其他人來說有欠公平。

我經常對家長說，他們自己正是孩子的專家﹗有誰會比父母更了解孩子的能力與情況呢？不過有些時候，作為專業人員，我們有責任將孩子可能出現的情況向家長說個明白。我知道對見證著孩子一日一日進步、滿懷希望的家長來說，有些說話真的很難接受。但請你們相信，很多時我們的用意也是好的。坦白說，"夾硬講衰"你的孩子，對政府/醫院工作的同工有什麼好處？(相反，可能有些私人執業的同事會借此希望家長多來"幫襯"﹗<--說笑的 )有時太高的期望對家長或孩子來說也不是好事。誠然，我也同意，他們對著孩子短短數十分鐘，怎麼可能提供最準確的預測呢？

我轉為私人執業之前也在大口環工作了四年多，我相信自己以前對家長所說的話，和現在說的不會有很大分別。真的，請你們不要因為個別不愉快事件而令自己不開心，也不要放棄作為公民的權利。香港的福利及教育制度，雖然比上不足，但其實在有限的資源下已算不錯，而且，的確有很多願意付出真心去幫助小朋友的同工﹗

mamee

mrscheung

我自己就幾認同稚言治語既見解.
用政府服務就係咁, 你(小朋友)有乜需要就排俾你, 依書直說. 至於心靈上面既安慰, 看來好難在政府服務中感受到.

看得出你真係好著緊仔仔既進度. 不過, 有件事可能你仍未接受到~就係你付出10分努力, 真係唔代表仔仔會有10分成續. 明明覺得已經努力左一整年, 點解仲未追得貼.
其實一年唔算係個好長既時間, 我一早接受左, 同仔仔要行既路, 可能要走5年, 10年, 又或者一世.

至於你話"It seems that our children are destined to be th weakest minority in the society". 我覺得真係有可能, 我地既小朋友永遠都比旁人差一些. 但咁又如何, 仔仔一樣可以活得快樂同有意義. 要為仔仔能所做到的, 感到安慰同高興. 你個小朋友其實已經幸福, 因為有你這個媽媽, 況且你仔仔亦唔係咁差, 唔好想得太灰.

mamee

kawai

Hi All,

I'm glad to have this discussing platform here to talk about our special kids.  I received a phone call from Mongkok children assessment centre last Monday after CNY holidays.  They invited my son to see their Dr. for the first time assessment on the next day (last Tuesday).  I told them I can't leave my work tomorrow and my husband was busy too.  I also asked if  it possible to change another day as you didin't give us any advanced notice for the appointment.  The lady said, I did inform you 2 weeks ago over the phone.  Then I said, you must dailled a wrong number.  She said, you've to wait for a few months if you can't come tommorow.  "I've no choice." I answered.

I don't mind to wait a few months more as my son now is changing channel from English to Chinese.  Hope he can make it.  
   


  

ALAL

I have the following experience with the government assessment centre professional in assessming my son who is global delay:

assessment by PT in  government : normal, no training needed.
a friend's friend , a PT who is retired but was in charge of hospital PT and OT dept : lag behind, need training, hospital should have this training.

assessment of OT in government : slightly lag behind, within normal range, should not have training, but because mum so nervous, then granted OT training
a friend's friend who is OT in Heep Hong: lag behind, need immediate training in many areas

assessment of CP in assessment centre: within normal range, no referral to ED needed
assessment of another CP in hospital: help me to recall the file from the assessment centre to refer to ED.

ALAL

And just for reference of parent, I hearsay a case about a special child of a headmaster of special school. The headmaster put his special kid in normal primary school for p1 but left the normal school  in p2 and switch to special school when he confirm that his kid cannot follow the teaching in normal school.

mrsphcheung

Dear ALAL,
'As a layman, and a parent of marginal special child, I feel so insecure and the world is so unreliable.'  I strongly have the same feeling as you.  The pressure of trying to be normal is very heavy indeed.  

Dear mamee,
Thank you for your sharing.  I have accepted my child's disability and have another plan for his future.  However, once he goes to a normal school, he will face a lot of problems, especially teachers who don't understand our children.  This is a challenging life-long task.  Please check PM.