( 阮文明的母親是 法學組 唐竹賢)
在購物中心休息區，有位穿著整齊的青少年跟在母親的身旁，口裡喃喃自語很開心，有時會高叫兩聲．走在我身邊的同學嚇了一跳，告訴我：“他是傻瓜，還是有神經病？”，我走過去和那青少年寒暄後，回過頭告訴我同學：“他不是傻瓜，也不是神經病．可能是有自閉症．”同學不解，“你怎麼知道？”，“我弟弟有自閉症狀，他曾經有些行為也和這年輕人一樣．”．“你說的是打電話給你，要你買東西給他的那個嗎？”，“對，我弟弟不是傻瓜，也不是神經病．”
猶記我年幼時，常有小朋友笑話我，“他弟弟是傻瓜”，當時我只會逃避，膽怯面對，回家和母親訴苦．然而母親的態度永遠一樣，“他們不懂你弟弟，他和別人不一樣，需要更多的關心和幫助．你是他哥哥，你和我一起幫他好嗎？”
在我們祖孫三代同堂的家庭，共同生活是一個很大的挑戰，管教子女方式，總會和上一代有衝突．我的祖父母在我三歲時才從越南移民來美國，而我母親是從台灣來的中國人，語言的溝通，生活習性造成家庭很多的不便和困擾．我成為他們的翻譯員．對於祖父母對待母親的言語和態度，讓我十分的憤怒並為她打抱不平．由於祖父母期望能自己一手帶大孫子，才算享有含飴弄孫的幸福．弟弟就在這期許下出世．祖父母將他捧在手裡親自養育，驕縱溺愛．造成他有很多壞行為，每當我母親有意見時，我父親勸阻我母親，不要干涉祖父母的教養方式．
弟弟入學後，老師告訴我父母，他有嚴重的學習問題，需要家庭一起教育他，我的母親才慎重的要求家中二老，爭取對自己子女的管教權．祖父母認為是我母親不孝，而我母親認為是祖父母過度的溺愛弟弟造成他的驕縱怪異，母親見弟弟聽不懂，教不會，喃喃自語，用頭去撞牆，成天只坐在祖母懷裡看電視．當時全家只有母親一個人為爭取弟弟未來的前途而努力．
教育自閉症的孩子，需要付出很多的耐心，金錢，精力和時間．母親白天上班，傍晚回到家後立刻教導弟弟，我經常也需要坐在他們身旁陪讀．由于效果太低, 我父親決定放棄弟弟, 他不支持我母親為弟弟的任何努力, 反而抱怨她花費太多的精力在無救的弟弟身上.
有一年夏天，母親教弟弟英文字母，從A 到Z，她準備一張張的白紙，要求他一遍遍的寫，不記得了，再重教一次，再寫一次．整整一個夏天，只為他能認得字母，懂得發音．他不識圖畫所描述的物品，母親就準備實質的物品教他說，讓他感覺，讓他體會．這一年夏天，我們看到弟弟除了認識了字母，也懂得倒水到水杯而不會滿出來．生活的點點滴滴，不是和一般小孩學習的過程一樣，那是一遍遍，週而復始，不斷重覆訓練出來的結果．
小妹是在這艱難期間，母親為考量未來能多有一個子女能分擔照顧弟弟而出世．然而天不從人願，小妹小時候身體不好，從一歲到三歲，不願出門，怕見人，在四歲入學後才發現她的學習能力低落，被學區評估為輕度自閉症，開始接受特殊教育的輔導．家中增加了一個不同症狀的自閉症孩子，母親的責任更加的繁重．她犧牲工作升遷的機會，讓自己有彈性的上下班，奔波於工作和教育三個子女間，但從未放棄自己的子女．
1996年，母親帶著我們兄妹參加了“華人兒童之友會”，她除了希望在這團體中能為我弟妹找到一個可以被接受的人群中活動，學習，和尋到更多的協助之外，更重要的，她也要我在此學習如何面對我的弟妹，及處理不瞭解的人給予我的難堪．在我不到十三歲的年紀，母親鼓勵我和這團體的義工兄姐，接受訓練和輔導．自此，我非常的釋懷，我和我母親也參加了義工的行列，輔導其他的朋友，幫忙學習上有缺陷的孩子學習及參與活動．母親提供了很多她個人教育弟妹成功的經驗，並以文章分享給更多有需要的家庭，提供給他們參考，鼓勵其他的父母親，每一分的努力都將會有收穫．
小妹由於母親及早的發現及努力教育下，終於在她十歲時脫離了自閉症．目前她的表現非常傑出，展現出心算，繪畫的成就和舞蹈的天份．活潑的個性，非常討人喜愛．曾經老師以為的“不可能”，父親以為的“無藥可救”，今天，她能和我辯論是非，心算比賽優秀講狀陳列家中，我為她感到驕傲．
弟弟目前已經是個二十歲的青少年，在他十歲時母親為了他手眼協調問題， 特別請求畫畫老師接受他，在初學畫時，大弟只能勾畫幾筆粗糙的線條，五年後，他筆觸才稍微比較成熟些．從素描，寫生，到創作．鉛筆，水彩，到目前的油畫，隨著他心智年齡的增長和不同的矯正，治療的結合，展現在他粗中帶細的畫，能告訴你他的世界其時色彩奔放，毫無約束，似乎能讓你進入他的世界，解開他心中的密碼．
我敬愛的母親，沒有妳的持續不斷的努力，付出和鼓勵，我也許淪落於心態的墮落與埋怨，弟弟和妹妹怎麼能有今日的成就？今天我能挺直腰桿子告訴所有的人，我的弟弟不是傻瓜！
Love endures if you are willing
Minh V. Nguyen
In the shopping mall, a young man, dressed nicely with his mother, was happily babbling, and made loud noise occasionally. My classmate was shocked by it and said “Is he dumb or crazy?” I talked to the young man and told my classmate, “He is not dumb or crazy, he might be autistic.” My classmate asked, “How do you know?”, “I have a brother, he has autistic syndromes, he acted like this too.” “Did you mean the one who called you for stuff?”, “Yes, my brother is neither dumb nor crazy.”
When I was young, I was often teased by many children cruelly; for example, “His brother is stupid; so he is stupid too, and his family is strange and weird.” As though we did not belong anywhere, I felt so ashamed and often complained to my mother. However, her attitude then and still is now always the same, “They don’t understand your brother. He is different from the others, and needs a lot of consideration and help. You are his brother. Can you work with me to help him?”
Three generations of my family live in the same house. By tradition, this is considered a great honor, but for me, it also proved a great challenge. There are a lot of different expectations and internal conflicts. My grandparents emigrated from Vietnam when I was three years old, and my mother is a Chinese. The communication and life style caused a lot of conflicts and inconveniences, and I became an interpreter and sometimes the focus of many conflicts within the family. Caught between both worlds where I was neither accepted because of my mixed heritage, thus I did not have many friends. I had to learn many things on my own and I was often left alone to deal with my feelings. But I was not alone, because my mother also experienced the same sense of loneliness because she was a Chinese mother in a Vietnamese household, which did not treat her well when I was growing up.
Grandparents always want grandchildren who would listen to them and make them proud, and unfortunately they also tend to spoil them. I learned for myself to not allow myself to be spoiled because I already knew who I wanted to be and balance between what was expected of me and what I expected of myself. But for my younger brother who never had a chance for his own self-awareness, he was at the mercy of forces he could not control. My grandparents took direct control in his upbringing and spoiled him badly which caused him to have many bad behaviors. He was out of control but my mother had no say in the matter because by Asian tradition, you have to respect your elders and conform to their decision, even if they are wrong. Whenever my mother complained, my father stopped her.
After my brother was at school, his teacher told my parents that he had a severe learning disability, and needed family’s support. Therefore, my mother requested the education rights from my grandparents. My grandparents thought my mother was bad and did not respect them, while my mother believed that my brother’s bad behavior was caused by my grandparents’ poor judgment. My brother did not understand anything, he babbled all the time, hit his head against the wall when he did not get what he wished for, or sat watching TV all the time. Do not misunderstand me that I do not love my grandparents; I do love them, but they are not infallible. There was no one except for my mother who fought for my brother’s future.
It takes tremendous patience, money, energy, and time to educate an autistic child. My mother works and still works day and night to teach my brother. Often I was needed there to help with my mother. Even though my mother worked so hard to teach him, the results could not reach most people’s harsh and sometimes unfair expectations, and finally my father gave up on my brother. My father no longer supports my mother to help my brother, and often complains that she spends too much effort on what he calls “her worthless child.”
One summer vacation, mother taught my brother the alphabet, where she had a notebook for him to practice it repetitively. If he could not remember the letters, she would teach him again and asked him to redo them again until he got them memorized. When he had no concept for objects from any picture, she needed to find real objects to show him, and asked him to touch and feel it till he got the ideas.
Right now, we could see his tremendous progress from then. He can read and write, he can communicate his own feelings and thoughts to others, he can understand other people’s feelings, he can help the family with grocery shopping, and he can help navigate when you are driving if he knows the area and knows where you want to go. From a spoiled child who could not do anything to a person who loves to help others, that is real progress that I cannot iterate any more clearly and what anyone should be proud of. All these progresses were through a lot of efforts with repeated training and persistence, which is not like how a normal child would learn.
My younger sister was born in this tough period, and my mother thought to have another child to share the load in taking care of my brother in the future. However, my sister was born with a delicate health, and my mom was not allowed to take her out of the house. When she was the age from one to three years old, she refused to leave the house, and was afraid to see strangers. After she went to preschool, her teacher found out that she had a learning difficulty and the diagnosis was minor autism at age 4 and my mother started her special education program. My mother’s responsibilities were heavier; she sacrificed her promotion to choose more flexible working hours. Working between an important job and three children, she still never gives up on any of us for a single day.
In 1996, we joined the “Friends of Children with Special Needs” which is a special family support group, a place for my siblings to join their activities and learn. She hoped to find more resources to help them, and helped me to understand them as well as taking care of my own issues. At age 12, I was encouraged to join the volunteer’s work; they taught me how I can help my sibling and other children with disabilities, and gave me some measure of peace and acceptance. My mother shared her experience with other families, who offered many programs for my siblings to get significant improvements. She submitted many articles to the FCSN newsletter for sharing what she went through, and encourages families to put efforts on their children (as my mother says “they [parents] will see the fruits, no matter how small it is”), and not to give up hopes and their children.
Because of my mother’s early intervention, my younger sister was fully recovered from autism at 10 years old. She is 13 years old now, outstanding in mental math, painting and dancing with a lovely and sometimes typically teenager personality. Before both her teacher and our father felt frustrated and could not help her in her math disability, now she is marked as talented child in math. She currently has some of my old teachers and tells me updates on her school life, and likes to annoy and joke around with her peers and superiors, which has caused her some notoriety – what can I say? “Like brother, like sister.” I am proud of her.
My brother is a 20-year old young man now. When he was ten years old, my mother persuaded art teacher to accept him for his eye-hand fine motor coordination problem. At the beginning, he could only draw very rough simple lines. After five years training, his art skills were recognizable. From sketch, still life sketch to creativity painting, and from panicle drawing, water color painting to oil painting recently, the mental improvements through various trainings and therapies show in his paintings which are wild with details. They can tell you his colorful infinitive world without constrain, and lead you to his world to decode his secrets.
My dearest and loving mother, without your everlasting hard working, encouragement and unconditional love, we could not have achieved what we have now without you. Though we did not grow up as most typical families, we do not regret that because we are unique and have our own personalities, which have been an occasional grievance for you time to time – but we are proud of whom we are because of you. I cannot fathom the despair and loneliness you felt, and my biggest regret is that I wished I could have done more. When I have a family of my own, I hope and pray I could be as strong, loving, and committed as you.
本文作者是 阮文明, 法學組 唐竹賢 的大兒子 數年前寫的
文明以母親為傲, 我們也以文明年少而知母恩為慰, 竹賢加油!!!------LHThanks for sharing and encouraging of this touching story! It almost can be filmed as a movie!
In the beginning, I was impressed about the chinese language ability of 竹賢 的大兒子; toward the end, I realized it was a translated article! Still, it is impressive enough!
Again, this column shows its true value, to help others, and to those who need to be helped.
Yes, we are so proud of 竹賢! Her life mission is fully achieved! She was testified; yet, she achieved it so well. Take care of yourself, 竹賢! I am really proud of you! ------Swallow
Thank you very much for your encouragement and support!
I am still trying to do my mission. It is a challenge, but I have to... I have to... -----竹賢
Dear 竹賢
It is toward the end of 2011, if we need to vote Person of the Year,
we would definitely Vote for You! ---- Swallow
沒有留言:
張貼留言
注意：只有此網誌的成員可以留言。