母子合譜星星知我心 唐竹賢
我的童年是在一種沒有關愛,嚴酷的家庭中渡過。在年僅六歲時,一個無知的過錯,我的母親就變得很不喜歡我。也許是因為家中孩子很多的緣故,我又夾在中間,自那時起,她就對我十分冷漠,動則得咎,任何我對她情感的表達,都得不到回應。彷彿她棄絕了對我的愛,這段童年對我影響很深遠。一直到我成年,無論是親情、友情、愛情這些情感的表達都是生疏而僵化。原本以為在我建構自己的家園之後,能讓我脫蛹而出,體驗家庭的愛和關懷,釋放累積在我內心的感情,然而事與願違,在結婚六年之後,我的命運再度讓我接受到幼年時期同樣的考驗。不同的是我曾暗自發誓,無論在任何情況之下,我絕不放棄我的家人,我的孩子,我珍惜我擁有的親情。
埋在我內心深處的情感,有執著的一面,有溫柔和脆弱的一面。我全心的付出,下意識中,我要彌補我生命中曾失落的真情和關懷,我視家人為無價至寶,我要他們分享我無條件的愛。
婚後的第四年,在祖孫三代同堂的家庭中生活,外子常常面臨許多的無奈,我因體諒他介於妻子及與父母不同管教子女方式的難處,就盡可能的配合夫家的規矩。直到次子及幼女的陸續出世,並相繼的發現兩個孩子都有學習上的障礙/自閉症的問題,外子開始顯示出他對未來感到絕望,他,終於選擇了放棄孩子,來逃避現實的折磨。這對我來說,像是個晴天霹靂,我不但從來沒有過這種念頭,也絕對不能接受,身為人母, 我怎能放棄我的骨肉。
我能體諒外子內心的煎熬,他是一位非常傑出的電腦工程師,有高等的學歷,也有許多值得驕傲的地方。所以他是完全無法接受這個事實,不相信這麼倒楣的事會發生在他的身上。為了維護這個家,保護我們的孩子,我放下尊嚴, 委屈求全,寫了一封信給外子,將我無法面對他用語言表達的想法,以文字表示出我真心的請求和期望。坐在電腦前打完信後,瀏覽一遍,平靜的按下送出的按鍵,輕輕的嘆了口氣,也許,是沉積已久的傷痛,憤怒和煎熬,早已達到我所能承受的臨界點。為了保有一個完美的家,為了保護我的孩子,我選擇放下我的強烈的自尊心,懇求外子接受一個他視為絕症的自閉症孩子,施捨一點他的愛心、同情心給我和孩子,不要一再的加諸給我們更多壓力和折磨,孩子雖然不能正常的學習,但他能感受到,他比一般正常孩子更需要關愛。
每當遭受到外子無情言語的傷害,這不堪回首的往事又再次歷歷的呈現在眼前。
次子是在倆老的期許下出世,次子的出世讓倆老視之為瑰寶,集寵愛於一身,倆老照顧的無微不至,所以次子漸漸長大所發生的問題,講不聽、說不懂、教不會,經常鬧脾氣,用頭撞牆和撞地,不守規矩,破壞長子的心愛物品,我們夫妻總是相信,是因為倆佬過度的寵愛所造成,而絲毫沒有想到孩子會有學習障礙的問題,更別說是我們完全沒有接觸過的〝自閉症〝。
1992年,次子經學區評估出學習障礙的問題,必須接受特殊教育的幫助,二老並不以為然,認為是我們和學校的老師小題大做,吹毛求疵,然而,次子在上大班的頭三個月,老師覺得和他說話就像是對牆壁說話一樣,他對任何人或任何的活動都不理會,沒有反應。次子的學習一直見不到進步和改善。
1993年,學校老師通知我們開會討論次子的教育計劃(Individual Education Program)時失望的告訴我,如果沒有家長的合作,次子的學習進步是不容易的。當時我只能含淚坦白承認,家人對學習障礙兒童的不了解,祖父母不但不幫忙教導次子,反而百般的阻撓我對他的管教。
熱心的老師了解情況之後,利用週末到家裏來拜訪外子,耐心的把次子的情況詳細的解釋給外子明白,次子如果有大家的幫助,他是有希望進步的。一席語重心長的話,外子才真正的面對現實,接受次子是有問題的孩子。
二老仍堅持要自己帶孫子,我努力的嘗試教導次子讀書,生活做息和糾正次子異常的行為。但一直得不到二老的支持和配合,外子終於出面阻止二老對我的限制。我們夫妻花了一年半的時間,才爭取到次子的管教權力,期間造成家裏的紛爭,層出不窮。婆婆也曾為此離家出走,並認為兒子被媳婦帶壞了。一個月之後因仍惦記著孫子才回家來。
我們原本以為只要專心教育次子,就會看到成果,沒想到,看到次子連放在眼前的任何的圖片都不能辨識,和次子說話,有如和外星人講話,講不通、聽不懂、數與量之間的關係更無法了解,僅管我們用盡了千方百計,次子的進步仍然非常有限。他不是聾子、啞子、也不是瞎子,可是就不知道你要他做什麼,每當看著次子無奈且茫然的眼神,我的心就會碎一次。面臨許多教育他的瓶頸,經常是得不到解決的方法,但如果我不堅強,不努力,次子的未來將會是更渺茫。
每當我嘗試教他一個單字,有時須要教他三,四百次才能記住,但三天之後就忘的一乾二淨。更何況一篇故事,恐怕花上一年的努力,他也跟本就不可能體會,我越是深入了解自閉症,我越感覺膽戰心驚。
為了解有關自閉症,我在1996年參加了特殊兒童支持的組織得到了無數的資料,終於恍然大悟,原來到目前為止還沒有任何解決的方法,吃藥、打針、開刀都沒得救。孩子的成長學習,是要靠各種適合他心理程度的教學,教材和方法來教育他,引導他,行為的矯正要有特殊的方法訓練他,語言溝通也要有專業的訓練。我們是無法依一個正常孩子的教導方式來要求他。
1998年,次子10歲的那一年,有一位老師推薦我帶次子去做些技藝訓練,他告訴我那將對次子有很大的幫助,我毫不猶豫,在同時為他安排了鋼琴、心算、繪畫、團體活動、游泳、功夫、語言矯正和中文學校等課程。在這階段,長時間的刺激和訓練,確實增進了他學習的能力及知識。
一年當中的變化,他能使用幾個字表達需求,及回答問題,他能稍微遵從幾個步驟的指令。只要陪在他身旁不離開,他能按步就班的寫功課,時間雖然花的長些,但是總是有一些許的收獲,今天看不到成果,但十天半個月的,他總會有些驚訝的表現,我很滿意他的成績,這一些許的進步,一直是支撐我生命的原動力。
然而好景不長,才見到次子逐漸的進步,在1999年次子11歲半進入青春期,突然之間,他所有的技藝訓練能力完全停止,而且出現暴力傾向,我嘗試各種不同的方法教導他,制止他以暴力行為去傷害嬌小的妹妹,但一直無法克服他突如其來的暴力舉動,直到 2000年朋友建議我一種 用藥物及飲食控制來減低對環境及食物的過敏原的治療法,次子接受了食物控制療法後,才暫時的抑制住他的不穩定情緒。
對於食物控制療法所帶給我的壓力是難以形容的。我白天工作,但時時仍需提心吊膽的注意他每天保持不可以中斷的藥物及針劑,如果中斷或弄錯任何一種藥劑,飯後兩小時他就開始煩躁不安,終止對外界的任何溝通能力,必須等到重新使用藥劑之後,才能恢復正常的坐息。在這期間很明顯的問題是,我只要有一點疏忽,沒按時給他針劑和督促他學習,在一週之內就立即可以看到他在學習方面的退步。
有好長一段時間,我掙扎於工作,家庭及教育孩子們的問題,時間、精神、金錢和體力,使得我精疲力盡,心力交瘁,但我仍然不鬆懈,不斷的祈求上天,賜給我智慧、勇氣及力量來幫助我的孩子,或是憐憫我的苦心,賜給我一種治療的方式來幫助我的孩子恢復正常。
2000年,在我最受煎熬的時候,外子對自閉症有了更多的了解和體認,知道他將面對的是對次子永無止境的付出但毫無希望的未來,他決定了放棄次子,並苛責我因不顧一切的教育次子,而疏忽了照顧其他的家人。他以他的忍耐已經到達極限為理由,要求我也要放棄次子。當時我是這樣回答他的,我永遠不會離棄我的孩子。
次子從十二歲到十六歲,他的理解能力和語言能力,一直停留在五歲的階段,這四年來,我絞盡腦汁也想不出任何有效的法子來突破這困境。
上天聽到我不斷的懇求,2004年的一個特殊兒童支持團體的母親聚會,我一如往常的在閒談時間請教其他母親,是否有新的資訊,或新的方法能幫助孩子改善學習狀況,其中一位母親和我提起有關她剛接觸一種新的治療方式〝優質大腦計劃〝。她熱心的和我分享她的經驗和簡單的介紹〝優質大腦計劃〝的一些概念。
〝優質大腦計劃〝,是以增進腦神經系統統合的功能的方式來改善孩子的學習功能,聽到她說的那一剎那,我心頭一跳,無法相信多年來我只有想像,尋找,但卻一直不得其門而入的方法,竟在此談話之中得知,我不加思索的在2004年7月參加了初步改善的計劃,僅僅兩次的治療經歷,次子的世界在一夕之間似乎豁然開朗。我由衷的感謝這位母親,她再度的點燃我和孩子重生的希望。
自此,次子不再需以食物療法來控制他的情緒及學習功能,他可以到任何地方,吃任何的東西,一點也不受影響,這對我來說,原本緊繃的情緒,漫漫無止境的路,終於可以畫下一道休止符。
他的暴力行為自此不再發生,更不會亂發脾氣。他關心他的兄妹,體量我的辛苦,在接受優質大腦計劃兩個月之中的變化,就像一齣戲劇,也像一場夢,似乎來的太快,卻足足讓我等了十幾個年頭。夢中驚醒,醒來時已飄滿了一頭花白的頭髮,但我無怨無悔,心中充滿感激和喜悅。
他變得擁有幽默感,他看到男孩子誤闖到女孩子的更衣室,他會覺得很好笑。他在陳述這事時,他表現的洋洋得意,我總是不忘給他無限的讚美和鼓勵他的表達能力。
這階段,他對事物理解能力提高,我不須要花太多的時間和精力重覆的教他同樣的課程。他的言談比較合理性。他也能接受我給他我們臨時必須改變行程的理由,而不再固執於一成不變的模式。這讓我看到了次子無限的潛力正蓄勢待發。
次子現今的改變,是我從來不敢奢望的,但眼見這默默待放的花蕾,正在陽光下掙扎的打開它緊包著的花瓣,我立即決定將次子由〝優質大腦計劃〝的改善計劃轉為密集式的計劃來幫助孩子。在進行優質大腦計劃密集式的治療之後的日子,我的心境有如大起大落的風浪。
次子的社交語言,從完全沒有能力發展到三歲的階段,他的閱讀理解能力,從五歲跳躍到六歲的階段,他像一個超齡的大孩子,天真無邪,他發問的問題也許偶爾讓我啞口無言,但是當我反問他的答案時,這才讓我恍然大悟,我們常把世上的事複雜化了,他必竟還是一個沉睡已久,初醒來單純的孩子啊!
他變的非常的敏感,不再希望別人以異樣的態度對待他,因此我們的言談舉止必須適當的調整,對待他,必須要和對待一位正常的孩子一般的合理,凡事必須要和他商量,因為他也有自己的主見來處理自己想做的事,雖然他的心智年齡比生理年齡小很多,因此如何拿捏對待他的態度和方式,成了我的一門新課程。
現在他有了自己的想法和努的目標,他告我要像哥哥一樣上大學,要獨立生活。他努力的想辦法突破自己學習的困難,在我的協助之下,他認真的做功課,讀書學習。
不到半年之間,次子能不須要我提醒和暗示任何用字和方式,和我侃侃而談學校發生的事和生活見聞,雖然我們偶爾因意見不同而爭吵,但我吵的很開心,說的很快樂,因為他能運用他的思考,給我很牽強的理由,這個從無言到有語的過程,我等了足足有十個年頭,我非常的珍惜它。雖然,我深信如果次子能早幾年就接受這治療,他就不須要走過這許多坎坷的路,但我仍然感謝上蒼聽到我不斷的祈求,給了我無價的禮物。
次子突破式的成長,並沒有讓外子回心轉意的意念改變太多,但我可以感受到,家裏火藥氣息似乎逐漸降低,外子偶爾會主動和次子開玩笑,或戲弄他,次子也能接受並回以適當的反應。
父子之間的默契漸漸產生,外子柔和的笑容,偶爾不經意的浮上臉孔,我內心的喜悅,無以倫比。我永不停止對上蒼默默祈求的恩賜,期望外子有一天張開他的膀臂,雙手擁抱我們一家人。
坐在客廳的沙發上,我手上捧著為次子從小就做整理的詳細治療及訓練的資料。已經是厚厚的一大疊了。也許有一天,次子能成為正常的年青人時,他自己可以珍藏這些記錄回憶已往迷失的生命路程。因為他每一步路走的比別人辛苦,我要他為自己感到驕傲。
朋友,你認為我這十多年的努力和犧牲值得嗎?
或許次子在他的生命輪迴之中找到了我,如同我找到了他,在別人的家庭,也許他將永遠沉淪,而我的一生,都在誠心的接受上蒼賜給我生命的焠煉,我愛我的家人,我愛我的孩子,我永遠會用我的生命來保護支持他們,直到我生命終止的那一刻。
本文資料來自於 http://exceptionalgallery.com/theraphies_sharing.html
A Mother's Wish by Jwu-Shyan Tarng
My childhood was tough. While growing up there was little love and considerable, severe discipline. When I was only six years old my mother came to dislike me. I don't know why. Perhaps she disliked me because there were too many children in the family and I was the middle child. For some reason she was totally indifferent to me. Whatever I did was always wrong and I could never please her. It seemed she just abandoned me and stopped loving me altogether. This sad childhood affected me profoundly. Now, fully grown, I have problems handling emotions. It is difficult and frustrating for me to express my feelings with and to my family and friends.
When I got married I thought I would escape this lonely cocoon and experience the love and concerns of an ordinary family. However, after six years of marriage, I had to begin a journey through another severe personal test. This voyage had to do with my children. And this ordeal would be different for them than it was for me when I was growing up. I swore to myself I would never give up my children and would always treasure them regardless of the situation.
In the deepest part of my heart I have a persevering, gentle and frail side, just like everyone else. I give all my heart to my family. This is partly, no doubt, to compensate for the family love I never had as a child. I treat my family as a priceless treasure. I want them to feel my unconditional love.
After four years of marriage my husband's parents, brothers and sisters moved in with us. My husband encountered many difficulties. I understand the dilemma between his family and his wife and I tried my best to follow the rules of his family.
Then my second son and daughter came into the world and we found both of them have learning disabilities and autism. My husband felt very disappointed. To him the future was bleak. He chose to give up the autistic child. He wanted to escape the torture of the reality of autism. For me his decision to abandon this child, so much in need, was a great shock. Not for an instant did I have such an idea. As a mother how could I possibly give up my children? I absolutely refuse the notion.
Although I cannot accept his decision I can understand my husband's pain. He is an excellent computer engineer with a Master's degree and has many proud achievements. But he cannot accept this problem and cannot believe how such an unfortunate thing as this could have happened to him! For my family and to protect our children I gave up my pride and wrote him a letter to express my heart's desire. I wrote that I wished for those things I need and want so badly but cannot tell him when we talk face to face. After finishing this delicate and difficult letter I read it again, sighed gently, and pressed the "send" key.
Maybe the accumulated pain, anger and mental torture had exceeded my tolerance. In order to make a complete family and to protect my needy child I chose to give up my pride and dignity and to beg my husband to accept an incurable autistic child. To please give a little love and compassion to me and the child. To please not give us more pressure and torture. Although this autistic child cannot talk or learn like a normal child, he can feel, and he needs love from other people. In fact he needs more love than a normal child. And especially from his father.
Many times I suffered from my husband's cruel speech. When that happened the undiminished painful past appeared in front of me again!
The second son was born with great anticipation of the grandparents. He was treated as a treasure with all the love and care they could give him. As he grew up, he had various problems: not listening, not understanding, temper tantrums, using his head to hit the wall and floor, destroying his brother's cherished items and generally not behaving. My husband and I believed that his behavior was caused by the grandparents spoiling him. We never thought about a learning disability, not mention autism. We had not encountered either before.
In 1992 the boy was evaluated as having learning disability problems and had to take special education. The grandparents did not believe the diagnosis and thought that the school and we were just picky. However, during the first three months at school, the teachers reported that dealing with the boy was like talking to a wall. He had no reaction to anyone or anything and he did not show any improvement.
In 1993, during an IEP meeting, the teachers said they were disappointed in his progress and told me that without the parent's cooperation the boy would never make much improvement. I could only confess that the family did not understand about learning disabilities and would not accept that this is the case with the child. And the grandparents not only did not help teach the boy but actually interfered with me in every step when I tried to teach him.
After understanding the situation at home, a warm-hearted teacher visited our house to explain the boy's situation to my husband. She told him that the boy would have hope only if he could get everyone's help. With this long educational talk my husband finally understood that his son had a big problem and agreed to help the boy.
The grandparents still insisted on taking care of the child. All of my efforts to teach the boy how to study and teach him life skills and behavior corrections encountered continuous interference and resistance from the grandparents. Finally my husband asked the grandparents to stop interfering. The response he got was a scolding from them. My husband and I went through one and a half years of struggle and turmoil with the grandparents before finally getting the "right" to educate the second son. During this period there was a constant battle between the grandparents and us. The grandparents believed that their son was bad because the daughter-in-law was bad. The grandmother even left home for one month. She came back because she missed the grandchildren too much.
Originally we thought there was a good chance we could have a normal boy back if we could educate him properly. We could not imagine that he could never talk or understand anything. Although I used every method I knew to teach him there was very little improvement. He is neither mute nor blind but he could not understand what we wanted him to do. We were, of course, heart broken. I tried and tried and could not figure out a solution on how to make a better life for him. I knew I had to be strong and could not give up. If I gave up, the boy would have no future at all.
Trying to teach him was extremely difficult and frustrating. When I tried to teach him just a single word, I had to try three or four hundred times before he would memorize it. Three days later he would forget everything. As for any kind of story or fairy tale, it was impossible for him to understand it at all. When I learned and understood more about autism, I felt more fear.
In order to learn more about autism I joined a special children's organization in 1996 where I got considerable precious information. I finally realized that there is no cure for autism. It requires suitable educational methods and materials that match the child's mental level in order for an autistic child to learn. And it requires professional speech therapists to teach him to talk. Standard methods of teaching normal children cannot be used to educate autistic children.
When the boy was ten years old, his teacher recommended that I bring him to special classes for skill therapies because he would get a big benefit from such classes. I immediately arranged for art, piano, mental math, play group, play date, swimming, martial arts, speech therapy and Chinese classes. During this stage of the long term stimulation and training sessions, he really showed improvements in learning capabilities and his knowledge base grew.
During that year he learned how to use several words that allowed him to express what he needed. He could answer simple questions and follow several steps of orders given to him. As long as I stayed with him he could do his homework. It was tedious and arduous work and we might not see the fruit of the work today but we could see the results in a month. Even though there was not much improvement, I was very happy for any gains at all. My son's improvements were the source for me to keep plowing.
Unfortunately he entered puberty when he was eleven and half years old. Suddenly all the improvements he had acquired from the skill therapies stopped and he developed a violent tendency. I tried various methods to prevent his violent behavior from hurting his little sister. All was in vain until I used a diet therapy that was recommended by friends. With shots, medicines and diet control his aggressive emotions became temporarily under control.
With the diet therapy and skill therapies continuing on a daily basis, the stress on me was unbelievable. I had to work during the day, do skill therapies at home and keep track of all the medicines and shots. If I missed even one dosage he would stop communicating with the outside world and became violent within two hours of a meal. If I did not make him do skill therapies he would lose all progress in a week.
After years of struggling with the family, the children's problems and work I was both mentally and physically exhausted. But I could not give up. I prayed for God to bestow on me the wisdom, bravery and strength to help my children and show me a way to help my son to become a normal child.
In 2000, during a most difficult time, my husband decided to give up the boy. He realized there was no cure for autism and there was nothing but never-ending work with no hope of a future for the boy. He accused me of neglecting the rest of the family members so I could put my full attention on the boy. His patience had reached the limit. And he requested me to give the boy up too. My answer was that I would never give up my child.
Between 12 and 16 years old the boy's ability in comprehension had stayed at the 5 year old stage. During these four years I could not find or figure out any method to break this bottleneck.
In 2004, during a gathering of a special children's support group, a mother introduced me a new method. It is called the "Brain Enhancement Program" (BEP). She told me of the concept of BEP and shared with me her experience with BEP and her autistic child.
The Brain Enhancement Program (BEP) improves a child's learning capabilities by improving the integrated functions of the brain nerve systems. When I learned of this method I believed that it may be able to help my son. He joined the improvement program of BEP in July, 2004.
Since then my son has not needed diet control, medicines or shots. He can go any place and eat any food with no side effects whatsoever. This is a God send for me. It vastly reduces my stress level.
His violent behavior no longer occurs. He has no temper tantrums and he cares about every member of the family. After two months in the BEP improvement program, the boy showed such considerable improvement that, to me, it was like a drama in a dream¡Kthe improvement came very quickly. But actually I had waited for twelve years and sprouted a lot of gray hair before something came along that helped my son. I have absolutely no regrets and my heart is full of gratitude and joy.
Now he can even understand humor, which is a subtle brain activity. Once he saw a boy accidentally go in the girl's restroom. He laughed and told me the story. I always give him compliments and encouragement for his oral description of the day's events.
In this stage his abilities and comprehension had increased substantially which reduced the time and energy I expended to teach him. I did not have to use a repetitive method to teach. His speech was easier to understand and he was less stubborn, probably because he was less frustrated. This situation showed that the boy might have infinite potential.
The change he made is what I never dared to hope was possible. Because he was like a flower bud that starts blooming slowly under the sun I made the decision to switch him from the BEP improvement program to the BEP intensive program. While under the BEP intensive program I felt as if I went through some sort of storm created by his turbulent and tumultuous changes.
My son's social language improved from nothing to the 3 year old stage. His reading comprehension ability improved from the 5 year to 6 the year old level. He is like an over-grown toddler. Sometimes his questions surprise me. When I cross-check his questions and answers I understand the confusion he has. His questions and answers are at the 6 year old level and do not match with his actual 17 year age level.
Nevertheless, he is just a newly awakened child from a long sleep.
He has become very sensitive. He does not like people treating him like a special child any more. So, we have to adjust our language and behavior to treat him as a normal and reasonable child. We need to discuss everything with him because he likes to make his own decisions but his mental age is far below his physical age. How to deal with him becomes my homework.
He has his own thoughts and targets. He told me that he wants to go to college and live independently like his older brother. He tries desperately to break his own learning bottleneck. Under my guidance he studies very hard.
Half a year after the BEP treatment he is able to talk to me about school and daily life with no reminders or hints. We might have arguments but I am happy because he can think and give me reasons. Sometimes the reasons are weird but the point is that he is thinking. I treasure his reasoning because I have been waiting over 10 years for him to talk with reason and logic. I believe that the family would not have had to go through such a difficult path if the BEP treatment had been available several years earlier. But I still thank God for this priceless gift.
His breakthrough did not change much in his father's attitude. But, at least, the explosive atmosphere at home is softening some. Sometimes his father might tease him or make fun of him. Happily the boy can accept his father's actions and have a positive response. The connection between father and son is gradually developing. His father's smile occasionally shows at home. I enjoy that small concession and thank God for all the help. I wish that his father will accept us someday.
Sitting on the sofa I looked at many documents related to his diagnosis, treatment and training since he was very young. I reminisced these records represent his growth and our struggles. Maybe someday when he becomes a normal adult he can use them as the recollection of his life's path. He will always work hard because each of his steps is so much harder than those of normal people. I want him to succeed and be proud of himself.
Friends, do you think it worth over a decade hardship and sacrifice?
Maybe my son found me as I found him during the life cycles. In some other family he might have slept forever.
I have been accepting life as a very tough test my whole life. And now, because of the success with my son, maybe my life will be better and a little easier.
I love my family, I love my children. I will always protect and support them until the end of my life.