4.佳文共賞, a.家長分享

小又的早療之路

圖/自閉症教養努力試實作團體,透過家長團體相互分享教養自閉症孩童方法。(106/4/13攝)

文/小又媽 106年

小又(8歲4個月),一歲八個月在台大評估發展遲緩和疑似自閉症,當時,沒有語言不會表達,剛學會跌倒自己站起來,只會拉大人的手去他想拿的物品前面,然後一直注視他想要的物品並推大人的手,表示要拿。這時,也開始了我們的早療之路。在三歲一個月的時候確診為”典型自閉症”。

這一切的診斷療育的過程,是由發現眼神的異常而開始,在小又一歲前,兩個半月就會翻身,七個月會坐,8個月會牙牙發聲,9個月會爬,一切都是那麼自然,但又有那麼一點怪,怪在哪???後來發現叫他的時候只會頭抬起來看一下,不愛看人的臉,到後來會發的音不見了,才警覺的買書、上網查資料、掛號,還記得買的第一本書”這樣算是自閉症嗎?”心裡充滿的是滿滿的問號,自閉症怎麼辦?沒有語言怎麼辦?怎麼教才好?看著他可愛的臉,喜歡撒嬌的靠在我的肩膀上,怎麼能忍心不為他多做甚麼。

在確診的頭兩年,除了買書、上網查資料,還會找講座找課程不斷的聽講座聽課程,這兩年上網查了很多的資料,看了論文、看了其他家長的分享,看了特教老師的文章,聽了不少講座也上了不少課,補充了很多的自閉症相關的”知識”,真的只是”知識”,我還是無法有效的將知識轉為方法,陸續的接觸到董媛卿老師、努力試課程、瑾心老師、曾意清老師…,才放慢腳步不再一直往外求取,改為將這些知識轉換成自己的方法,過程不是那麼順利,起頭不難難的是要怎麼跨出第二步第三步,要面對的不是只有孩子,還有自己,人都有”我”,”老我”也需要教育需要改變,因為很多時候問題不見得是出在孩子反而是在大人;再重新安排療育時間和內容,讓時間用在合適的地方,安排在家的課程,按著孩子的狀況給予適合的課程,也延續在治療室的療育,雖然進步緩慢,卻是一直持續進步,孩子的進步也是我繼續前進的動力。

小又從幼幼班就進了幼兒園,到中班的時候因為一些因素讓他處於一個非常混亂的環境,在幼兒園老師的評論是他沒有任何的能力,無法融合,無法學習,無法生活自理,在我沮喪到不能自己的時候,瑾心老師給了我幾句當頭棒喝的話,大意是你以為未來孩子在小學會有多有善的環境,在自己的能力培養起來之前,不會有人時時在孩子身邊噓寒問暖關心,唯有培養好能力才是最重要的,怨天尤人是沒用的,沒有人有義務要幫你,除了你自己。這些話我一直記得,除了再次的跟學校老師溝通(老師的難處我們都了解),跟陪讀老師溝通 (這樣的孩子需要幫忙的是”讓他做”而不是”幫他做”,他已習得的能力會因為太過的協助而喪失);自己教,孩子需要反覆的練習,在治療室的時間顯然是不夠的,而且不只是桌上教學,生活上任何情境都是一種學習;我們也跟著潘師學習,從基本的圖片認知開始,到現在認識國字,學習思考,練習聽覺記憶,一點一點的累積,也許比別人慢很多很多,但我們也一直堅持的努力著。

小又面對到的狀況稍為複雜,生理上有體內重金屬值偏高、自體的代謝系統出狀況,鋅銅比例失調,神經發展上的問題和過敏。小又比其他的特殊兒還要躁動、衝動,我們也還再找方法,不是那麼順利,但是有做有機會,堅持下去,即便我們也會軟弱也會失望也會有情緒。感謝支持我們的師(家)長,醫生、治療師和小朋友,未來的路還很長,真的感謝有您們的陪伴和鼓勵。

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