自閉兒爸爸的分享

ctyccs

I am new to BK.
My daughter has been diagnosed to be Asperger syn. since age of 7. She was odd and has great difficulty in school work. IQ test few years ago showed that her IQ was around 70-80. After these years, we have accepted her and has made some special plan for her and our emotion has recovered slowly. We could manage to live our life happily and normally with our daughter then.
However, we found that she has deteriorated in recent 1 year since she has been promoted to P6. I thought she has emotional problem and was unhappy in school as she could not understand what the teacher was talking about (I think you would agree with me that the P6 syllabus is very difficult even for normal kids!). We saw our doctor and he advised to have another IQ test done. Out of our expectation, her IQ has deteriorated from 70-80 to 55-60!     
My wife and I could not accept this fact! My wife cried and I wanted to cry too (but I didn't).
We have already accepted our daughter has low IQ and is a difficult child. Howcome her IQ deteriorate further and fell into the category of mild grade mentally retard!!! Our feeling was just like someone has stab our healed wound and put some salt onto it!     

Does anyone has similar experience? Please share with us.

生生爸爸

ctyccs,

我明白你與太太的感受, 有時醫生的評估結果會令一而再跌倒心靈的谷底, 子女的將來就因為短短的60分鐘觀察及測試變得絕望!

但兒女的未來就一定要靠我們為他們爭取回來, 你由否問過學校社工意見, 可否轉介去特殊小學去重讀, 待她能力去到基本程度才返回主流學校, 一切安排最緊要令女兒快d進步及學習愉快!

生生爸爸

今天生生與太太一起去買花, 經過學校附近公園, 他看到同班3位同學於公園玩耍, 太太給他玩5分鐘, 於是他很高興地走向同學處, 但同學說: 生生來! 我們走! (意思唔想同佢玩), 但生生沒有離開, 反而追住其中一位他經常說"很老友的同學", 生生希望可以與"老友同學"一起玩, 但"老友同學"不單沒有與他玩, 甚至推他跌在地上!

回家後, 生生好唔開心, 甚至唔想去街玩! 但我放工後問他發生生甚麼事, 他只是"老友同學"打他!

於是, 太太將件事完完本本向生生講一次, 使他嘗試明白怎樣描述今日發生的事. 為此事, 我與太太當然唔開心及有d心酸, 點解生生會被同學排斥及欺負呢!

從此事, 使我與太太更明白:

1) 要教曉生生怎樣表達情緒, 當他給"老友同學"打時要表達憤怒;
2) 要令他明白怎樣處理給人欺負, 不要單單話給老師或大人聽同學打他, 更要學職在沒有大人在場時保護自己- 給人打, 先要離開, 然後再表達不滿, 甚至有需要保護自己時捉住人家的手!

為了令他明白以上2點, 我與生生特別做角色扮演, 模擬今日所發生的情景, 讓他嘗試做出應該的反應及行動!

作父母要認真面對一個事實, 當孩子越來越大, 他四周的人和事會越來越複雜, 我們不要過份他們, 令他失去保護自己的能力!
我想生生明年上小學會要面對更大的挑戰, 老師要照顧40位學生, 所以不會像幼稚園老師般可以更密看顧生生, 我與太太會把握7個月時間, 令生生在目光接觸及社交進步!







    

mrsphcheung

Dear Ctyccs,
Emotional barrier may be the most important factor leading to your daughter's deteriorating learning ability.  Try to consult some professionals to help her to express herself.  Don't think too much about mainstream school or special school.  Just think about a place which is suitable to your kid.  [I also adopt this attidude about the choice of school for my son.]   

sjmama

Dear ctyccs,

I would suggest you to ask Dr. T, though he's leaving. Maybe you can PM him, see if he will answer your PM. If not, pls let me know. I can give you his email address.

ctyccs

Dear 生生爸爸, mrsphcheung & sjmama,

Thank you all for your message. I feel much better now. Actually I have planned to send my daughter to special school next year. I think and I hope the condition will be much better then.
I am sorry for using English here. Actually I prefer to use Chinese to communicate with you all but my Chinese typing is poor and slow.

nausica

Dear ctyccs,
School performance is not all that matters.  More important is how to lead children to live a happy life.  Focus more on their emotional development and care about their feelings and let them be happy.  This is a great challenge to both children and us.

生生爸爸

新年前, 我們教生生如何向別人"bye"年!他於初一時, 可以運用翻出來!

年初二至初三在爺爺家裡留宿, 與細姑姐及細叔玩! 真是多謝的接納及實際行動支持!
在年初四, 我與太太為細仔歷歷舉行了3歲生日會, 但大部份出席的小朋友都與生生年齡差不多, 生生玩得很投入, 完左生日會後都有講自己係細仔生日會很開心, 而且更說自己生日時亦要攪生日會!

前日生生於公園玩, 有一位小朋友叫他一切玩捉迷藏, 他曉得話好及與小朋友追來追去,玩得好開心! 返到屋企, 心情好, 胃口又好, 仲潻飯! 看見他的進步及突破, 我與太太都好興奮!

katyfok

生生爸爸,
I spent almost 30 minutes to read thru all 7 pages. It's amazing to see how you overcome all the opstical and maintain optimistic.
Our daugther is now 23 months... and she was assessed back Dec and diagnosed with mild Autistic and mild ADD.
It was a shocking news... becuase the only reason for us to see the Specialist was that she has no word yet. not even papa or Mama....
She has good eye contact, love to huge and kiss me or strangers, smile to strangers a lot... no self desructive action... no specific rountine... she even spent almost 3 months crowling before she knew how to walk...., the only thing is that she seldom answer my calling, and she is' really active... I mean active in a sense that she can't stop moving around and shift toys easily... I took it as she was justa impatient baby..... to be very honest with you, i am still at the stage of denaiel.  I still cannot believe she's autisim....
She started play group since she was 10 months and even the teacher was suprised with the result.
No matter what, we have started speech therapy,and occupational therapy at heep hong this week.
I'm frustrated and sad at the same time... we are expecting 2nd baby this month... and this makes helping her more difficult... If I had known about this earlier, i would not even consider having another baby.
But like many said, if this is destine to happened, must have a reason. we have to try our best to help ...
just that I'm so tired all the time... and the pregnancy is making me very impatient.....
Well, enough venting.... life must go on.

生生爸爸

katyfok,

多謝用了30分鐘去閱讀我的分享, 面對生生的問題及表現, 夜深人靜的時候, 自己都會容易想到消極處, 但現實是只有我與太太正面面對, 尋找適當的方法, 生生才能會有機會進步, 甚至將來自己獨立開心地生活!

有時會想過咩野都唔理, 等生生大過d算, 只少我與太太現在可以輕鬆d, 唔洗成日就安排他這裡做SI, 那裡做言語訓練, 社交訓練, 但, 我會記起身邊有一位朋友的弟弟的故事, 來提醒自己, 這位朋友的弟弟現在20多歲, 細個時, 他的媽媽知他有自閉症, 但, 媽媽採取面對的方法是保護他, 他在小學給同學欺負, 媽媽就不給他返學幾年, 在家自己教他, 這位媽媽實在很疼他, 但是, 兒子就不能學識怎樣與人相處, 中三未完, 他就沒有再讀書, 在一間餐廳廚房做洗碗, 有時會給同事欺負, 但因為他覺得適合自己, 一做7年, 最後, 因為與同事相處真係好唔開心, 於是無做, 現在日係家裡自己間房等日子過!

我與太太都一致認為, 現在辛苦, 好過一世辛苦, 甚至當我們不在時, 辛苦其他人照顧生生, 所以, 唯有現在有幾多就做幾多, 正如聖經所說: 多種多收, 少種少收! 生生有幾多進步, 不是除了身邊不同人幫忙外, 最緊要自己每日都要放時間給他訓練!

katyfok, 像我們的情況, 細仔出世後, 雖然我們的張力會更大, 但他給哥哥生生的互動及刺激, 令生生進步更大! 所以天父對我們照顧好奇妙! 像你最初的想法, 太太都是有了細仔, 才知道醫生對生生的判斷, 如果一早知, 就不會有細仔, 生生亦可能不會有咁好的改變!  

希望你們一家開心地迎接健康小寶寶的出世!

生生爸爸及媽媽

katyfok

生生爸爸,
I really admire your courage and determination.
It's also comforting to know that a younger brother helped  生生. I guess, this is what I 've hoping too....
we, of course will not give  up on my girl... but sometimes, I can't help but ask WHY??
Actaully, did you ever ask the Dr. why? Is it Genetic??
or ramdom.. or something I did during pregnancY???

hinhinmummy

katyfok

不要問原因, 到目前為止, 醫生都吾知點解, even軒軒見埋遺傳科醫生, 抽血, 做埋磁力共震check腦, 都無原因

我記得曾經有個家長講過, 有個牧師傳道時講過, 不要問天父, 點解是我, 應該問, 點解吾是我

momo

我也問過dr.這問題, answer亦是"不知道".....
也問過神, why.....

記得牧師曾經講過, "信仰是要來盛載生命, 不是要來解釋生命."
聽罷, 我都感到很有意思.

YRaymond

Hi,

I agreed 多種多收, 少種少收!
As a working 爸爸, what will you do / play with your son or daughter at night or holiday? What kinds of games are suggested.
Thanks a lots.   :

Dr.T

抱歉現在才看到你的困擾...

你囡囡智商減少的最大的可能性是她的言語理解/表達能力沒有隨著她長大而增強,在此消彼長的情況下便有分數每況愈下的現象.由於沒有她的分數分佈在手,所以我只是猜測有此可能.

如果我的估計是正確的話,那不是她的腦部出現問題導致退化,而是一直以來的學習及訓練似乎沒有令她的思維方法有所改變-坦白說香港一般學校的課程是重量不重質!

根據大師皮亞杰的理論,小朋友與成人的智能表現的分別不是在於量的改變,而是質(思維模式)的進步.

所以外國有課程是針對學生的思維方法去訓練而增強他們的智能表現,例如Feuerstein 的 Instrumental Enrichment.

ctyccs 寫道:
...We saw our doctor and he advised to have another IQ test done. Out of our expectation, her IQ has deteriorated from 70-80 to 55-60! ...

gigi2

Dr. T,

Can you advise which schools in Kln & NT sides will develop children in this direction?  Better will be local schools no matter they are private, DSS or gov’t.  In respect of international schools, should all be suitable?  My girl is currently K2 and we will apply P.1 this coming Fall.

I would like to get some ideas from you.  Many thanks.
  

Dr.T

不介意的話請先brief一下我小朋友的大概情況,相信你有可能話過我知...

實情掛羊頭賣狗肉,說一套做一套的學校實在太多...我等一會pm一些家長普遍有信心的給你吧.

gigi2 寫道:
...Can you advise which schools in Kln & NT sides will develop children in this direction?  Better will be local schools no matter they are private, DSS or gov’t.  In respect of international schools, should all be suitable?

gigi2

Dr T,

My girl is now 4.5 yrs old and is studying at K2 in a normal local Chinese kindergarten.

When she was 2.5, she was diagnosed as autistic features by a paediatrician from Shatin Yan On hospital but recommended her to receive EETC only.  Today, she has shown much improvement both from Heep Hong and comments from her kindergarten teachers.  Her expression is not too bad with good memory but communication is weak as she prefers communicate with adults rather same age children.  From recent discussion at school, her teacher told me that she would be no worry about her ability with the school curriculum but just concerned about her social skills in future primary school life.  Her discipline will be sometimes good but sometimes bad in class.  Fortunately the class teachers are very patient and supportive to her.  The class ratio is 1:5.  

From Heep Hong, she just now receives training in the areas of early education, speech, social skills and gross motor.  Her fine motor is very good so that she never is required to attend OT class.  Her gross motor has not got big problem anyway.

Last June in 2005, my girl gone through the assessment again by a doctor from Ha Kwai Chung Gov clinic and the result was that my girl was not autistic features (actually I don’t care anymore but just treat it as a bonus to me).  After the 2.5 hours assessment, the doctor told me that my girl was anxious in social skills – not precisely but something like that.   Again, my girl does not need to get I-seat or special seat from kindergarten.  This coming June, we need to go through assessment again at Ha Kwai Chung before her K3 starts.

Actually, I feel more relax than before at the time of knowing her problem.  She has no big problem to describe a lot of things but still weak in expressing her own feelings and 2-way communication with others.  So far, she can concentrate well with her homework everyday without problem.

Thank you for your advice.

cwong140

Sang Sang Daddy

I completed understood what you and your wife's feeling since I am also have the same feeling with you.  But I also remind myself we need to try our best and find whatever methods you can see to help our children.  Time is easy to go out and we need to catch up every chance to help them.  I am a Christian too, thanks God.  If I am not, I don't know what will be today.  You can see this website, you are not lonely and so many similar cases like you but they are very strong to face to and try to overcome this.  We are sure God give us the most valuable thing to us like our children.  先苦後甜, that is God promise to us so work more hard on our children then you can see a bright road.  You need to work hard on 2 children but I am sure yr 2nd son will help more on the 1st one - this is the road God prepared for you.  Add Oil!!!!

Dr.T

我記得小朋友啦...高興見到她有進步,轉眼又一年

pm了一些學校名給你...

gigi2 寫道:
... So far, she can concentrate well with her homework everyday without problem.