2019公益講座~選擇性緘默症的天籟之音

希望全天下的選緘孩子,能在校園裡更無憂無慮地學習,這是我最深切的期盼!」劉雅真老師在甫出版的《不說話的女孩:雖然我們有選擇性緘默症,但是有話想說》寫道。
劉老師曾幫助三年在校從不開口的學生重拾聲音,又創立「選擇性緘默症者&家長&老師的討論區」FB社團,也是台灣選擇性緘默症協會創始人之一。
這場台南的免費講座,將由劉老師主講多年來幫助選緘孩子的實務經驗,還有選緘大孩子親身分享,以及有獎徵答活動,絕不能錯過!
名額有限,立刻報名👉
※若您是台南市老師,有研習時數2小時,請另至學習護照報名(研習代號:227605)。
※承辦人:吳承蒲 電話:(06)2620024#203 Email: tnallen5@tn.edu.tw
👉劉雅真老師「給老師的一封信」📭
劉老師演講節錄~

給老師的一封信


💓劉雅真老師即將於2019年7月3日下午2-4點在台南龍崗國小演講「選擇性緘默症的天籟之音」,絕不能錯過👉http://selectivemutismtw.blogspot.com/2019/06/2019.html


Dear○○老師好:

今天之所以鼓起勇氣寫信給您,是這樣的~

在台灣有一群孩子與家長非常需要協助,而且人數還不少!(老師,不是要您捐錢喔!怕您誤會了。😁

他們在家很活潑,會唱歌也會跟家人吵架,一旦到了學校卻因為焦慮而聲音幾乎卡在喉嚨出不來,有些孩子甚至三年在學校完全沒有說過一句話。18年前的我就是遇到這樣特別的孩子。

因為心疼他一個人獨來獨往,我以社工背景努力想了許多輔導技巧幫助他,孩子竟然在一年內走出緘默:在教室背唐詩,拿麥克風幫我叫同學的名字,這讓我深感驚訝!這孩子現在已經約30歲,出社會工作了,我們仍舊保持聯繫。

這樣特別的病名稱之為:「選擇性緘默症」。但其實,這並不是孩子們自己的選擇⋯⋯而是他們只要到某些環境會有嚴重焦慮導致無法言語,最常發生在孩子每天要去的校園。

我將輔導孩子的過程po在部落格,希望透過部落格可以幫助其他遇到選緘孩子的老師。後來在臉書社團成立了「選擇性緘默症&家長&老師的討論區」目前人數2000多人,成員除了台灣之外,也有部份來自韓國、香港、澳洲、中國的家長和選緘者,另外也有心理師、老師、輔導系學生、醫生等專業人士。

今年8月「台灣選擇性緘默症協會」終於成立了,我也參與其中。成員幾乎皆來自臉書社團。

許多家長們對於此症完全不知道所以焦慮,更多的孩子在學校被誤解,被說是啞巴。人際關係出問題之外,有些孩子甚至身體僵化無法上廁所導致尿在褲子;有些因為無法發出聲音唱歌被扣分,英語課、語文課完全無法朗讀。上課下課獨來獨往,沒有朋友又被師長誤解⋯⋯最後有些只好自學,無法自學的孩子有些中輟,當然,更嚴重的還有自傷的行為。

然而,學校老師對於此症幾乎不了解,所以無法有效幫助孩子,甚至有些錯誤思維與做法讓孩子們更陷深淵。孩子就醫時,部份醫師也完全不了解。

家長們被誤會太過寵溺導致孩子如此,孩子們被誤會對師長不禮貌,當然,被言語霸凌者也為數不少⋯⋯種種的現象只因太多老師和孩子不知道這是「選擇性緘默症」。

開學是這些孩子們與家長們最焦慮的時刻。有個孩子至今每天失眠到天亮,有的孩子一直咬著手指頭。

○○老師,我很想幫助這些家長與孩子們,這些孩子人數比我想像的多更多,我想拜託老師可否幫忙轉貼分享關於此症的訊息?讓老師們認識「選擇性緘默症」,進而幫助他們適應校園?

所以我思考了一個月,很冒昧提出拜託老師幫忙臉書貼分享的想法。老師若您不方便也沒關係呦!請原諒我的冒昧請求,非常非常感謝老師您聽完這些故事!
協會理事/教師 劉雅真 2017年12月

《不說話的女孩》贈書活動

《不說話的女孩:雖然我們有選擇性緘默症,但是有話想說》贈書活動,本周日(6/23)中午12:00截止!
台灣選緘者第一本自述書,讓隱形的一群人開始被了解,感動了很多人!善心企業提供經費,將本書捐贈給各級學校、公共圖書館、醫院圖書館等單位。邀請您共襄盛舉,填寫表單,本書將優先送達您指定的單位!
立刻填寫👉shorturl.at/fDOUV

Parents of Students with Selective Mutism Wrote a Letter to Universities, Hoping for Flexibility in Admission

By Xiaoyun Lin, Liberty Times
Taipei Taiwan, May 11, 2019

One in 140 children suffers from selective mutism. The Selective Mutism Association of Taiwan (SMAT) wrote an open letter to universities. They explained that many students with selective mutism cannot take face-to-face oral exams and that some may even be unable to take written exams in unfamiliar settings. The SMAT hopes that universities in Taiwan will become aware of this group of students and offer the flexibility needed for their participation in the admission process.

The SMAT issued the letter on the eve of Mother’s Day amidst the recent controversies surrounding the changes in the nation-wide university admission process. They hope that students with special needs including those with selective mutism are not overlooked during the policy overhaul aimed at providing more diversified access to university. For example, programs have been offered for students who are disadvantaged in standardized exams or economically challenged.

While selective mutism is not rare, it is rarely understood. People with selective mutism behave normally when relaxed but become mute and frozen or even panicking once anxiety kicks in. The typical example is a child who is talkative at home but completely mute at school. The earlier a child with selective mutism gets help, the easier it is for him to overcome this condition. However, due to a lack of awareness and resources, many of them are left untreated and develop school phobia, social anxiety or depression when they become teenagers or adults.

In 2017, a student with selective mutism, instead of going to a centralized site, was allowed at the last minute to take the entrance exam to high school at the exact same location he was used to in his original school. He was thus spared panic and scored well. This marks the first such example in Taiwan’s special education history. In the recently published We Have Selective Mutism, But We Have Something to Say, the first book written by selective mutism sufferers in Taiwan, Rochelle states that had she taken the entrance exams to university she would have failed to show any of her potential. She would not have been able to take oral exams and would have frozen and panicked during written exams. Fortunately, she entered her dream department through a special admission program based on past school records.

Anita Huang, chairperson of the SMAT, said, “Amidst the protests launched by parents regarding university admission, we mothers of special needs children have a very different focus. While others worry about whether their children do well in the exams, we worry about whether our children are able to take exams at all. The universities have been rightly increasing access for students with less resources as they often need to strive harder to achieve the same exam score. This supports universities' mission to encourage social mobility. We hope special needs students are considered in the same light to enable them to pursue their dreams.”

Anita Huang quoted from the aforementioned book, “What entering university means is that one gets an opportunity, through his own efforts, to choose how he wants to live his life. The support of the educational system means that everyone is treated equally and empowered to explore the world. Even a slight adjustment has unimaginable power. Please give an opportunity to special needs people. Their feeling of ‘I can do it’ is fire and a friendly environment is coal. When they meet, they can light up hope in the darkness of the night.”

The SMAT proposed that, according to the Selective Mutism Resource Manual, in principle selective mutism students should be allowed modes of examination that have worked in their past experience. Actual measures may differ for each student, including extended time, writing or typing instead of speaking in oral exams, voice or video recording at home (or other locations where the student is at ease) instead of oral exams, oral exams conducted by a teacher whom the student is already able to speak to, parental assistance during oral exams, and alternative sites for written exams. For example in the UK, students with selective mutism and social phobia can take exams at home or in a public location.

Photo source: Selective Mutism Information & Research Association, UK (SMiRA)
Link to the original news https://news.ltn.com.tw/news/life/breakingnews/2786923

Photo source: SMiRA

在大考爭議中,我們是選緘者的母親……

正值大考爭議、會考季節,又逢第一本台灣選緘者自述書的出版,今天是母親節,我們是選緘者的母親,希望各界在討論多元入學管道時,不要漏掉包括選緘症的特殊考生。例如特殊選才照顧一般考試中不易發揮的考生,以及各大學針對弱勢考生的招生計畫(目前主要是經濟弱勢),希望也能考慮特殊需求。
選擇性緘默症並不少見,卻極少人了解。選緘者自在時很正常,但一焦慮就當機、有口難言,身體凍住、僵住,甚至陷入恐慌。常見的典型是在家多話在校不語,判若兩人。每140位孩童便有一位選緘[1],愈早幫助愈易痊癒,但卻常因不了解、忽略,而延續至青少年、成人,衍生懼學、社交焦慮、憂鬱等。
2017年會考,患有選擇性緘默症的小皮,得以在原校模擬考位置應考,創下台灣特教史首例,否則恐將科科零分。甫出版的台灣選緘者自述第一本書《不說話的女孩:雖然我們有選擇性緘默症,但是有話想說》[2]提到,作者無法口試、筆試亦會凍住、暈眩,幸而以繁星考上夢寐以求的科系。
選擇性緘默症考生面對大學入學考試,口試幾乎一定無法參加,輕者還勉強可參與筆試,嚴重者連筆試都可能無法參加 ,我們寫給大學特招中心一封信,希望藉此簡短說明,讓大學知悉有這麼一群孩子,期盼在招生時為他們保留彈性和參與的可能(附件一)。
在大學考招制度的爭議中,特殊孩子的媽媽擔心的不是「考得好不好」或「有沒有鑑別度」的問題,而是「能不能考」、「考上後能不能念」的問題。其實,資源稀少不只發生於偏鄉,特殊孩子學習之路也很坎坷,因此考出同樣的分數,背後的意義卻不同。如同肢障、視障等,隱形的情緒障礙同樣需要考試和上課方式的調整,才有機會求學、圓夢
升學「意味著透過自身的努力選擇自己喜歡的生活」,而制度的支持意味著「仁愛灌溉著每一位對世界感到好奇的孩子」。「即使是簡單的制度微調、特殊措施,都有超乎想像的力量,請給特殊需求的人們一點機會,發覺自己也能夠做到的欣喜是火苗,感受到環境的友善是炭,可以點燃暗夜中的希望之光。」
「我們都一樣,不論可不可以說話,不論有什麼樣的生命課題,都可以愛人與被愛,這是生而為人的天賦。」期盼在台灣,不管任何表達方式,書面、口語或輔具,每個人都有機會展現才華、貢獻社會。誠心期盼大學在促進社會多元、階級流動的努力中,也考慮到長期受到忽略的選擇性緘默症孩子。
《不說話的女孩:雖然我們有選擇性緘默症,但是有話想說》關於大學考招的段落
最後祝福天下辛苦的媽媽們,母親節快樂!


[1] 資料來源:《選擇性緘默症資源手冊》第二版(Johnson & Wintgens, The Selective Mutism Resource Manual, 2016)。
[2] 本文之引用除另外註明均來自:《不說話的女孩:雖然我們有選擇性緘默症,但是有話想說》(Rochelle & Ayaha, 釀出版, 2019)。

選緘考生家長致大學特招中心的一封信

○○大學招生策略中心,您們好!
感謝貴中心致力於多元選才,讓現行入學方式中處於不利的學生,也能有機會。我們是臺灣選擇性緘默症協會,由於選緘的患者從小孩到大人都有,會影響入學、就學及在校學習,而且目前台灣對此症的認識尚不普及(今年三月我們舉辦大型國際演講[1],衛福部心理及口腔健康司諶立中司長表示,他當精神科醫師30年,從沒看過選緘患者,但根據德國的經驗,選緘比自閉症患者多34[2]),因此我們希望能向您們說明選緘學生的處境。
選擇性緘默症在《精神疾病診斷與統計手冊》(DSM-V)歸於焦慮類,經常合併社交恐懼症、幽閉(或廣場)恐懼症。主要特徵是在某些特定場域中無法說話(並非不願意說話),即使受傷、甚至危及生命,也無法出聲求救。這些特定場域通常是學校(但不限於學校)。有些患者只是不能說話,其他功能不受影響。但較嚴重者可能身體無法動彈、面無表情,腦筋一片空白。但在不受選擇性緘默症影響的場域,則是完全正常的,包括說話。
選緘學生大多在學校不是被忽略,就是過得很辛苦,容易成為霸凌的對象,也常常無法繼續就學。他們大多學業上沒有問題,甚至很有才華(他們屬於高度敏感氣質,往往觀察力敏銳、注意細節),即使因選緘失去許多機會,仍然在逆境中靠著自學等方式努力求學。然而面對大學入學考試,口試幾乎一定無法參加,輕者還勉強可參與筆試,嚴重者連筆試都可能無法參加[3]。因此,我們希望藉此簡短說明,讓貴中心知悉有這麼一群孩子,期盼在招生時為他們保留彈性和參與的可能。
在此想與您們分享《選擇性緘默資源手冊》中,有關選緘學生考試的調整。以允許學生過去紀錄中可行的方式為原則,實際的做法因個案而異,可能包括:(1)延長時間;(2)以筆談或打字代替口試;(3)以在家(或其他自在的空間)錄音或錄影,代替口試;(4)由學生已能面對說話的老師進行口試;(5)由一位家長陪同進行口試;(6)在替代性地點筆試。[4]以英國為例,選擇性緘默合併社交焦慮者[5],可於家裡或公共場所應考[6]
非常感謝您們耐心聆聽!如需更了解選擇性緘默症,請與我們聯絡。
台灣選擇性緘默症協會 敬上


[4] 《選擇性緘默症資源手冊》第二版(Johnson & Wintgens, The Selective Mutism Resource Manual, 2016)。
[5] Sutton, C. and Forrester C. (2016) Selective Mutism in Our Own Words. London: Jessica Kingsley Publishers, p. 203.
[6] 見於英國資格認證聯合委員會(Joint Council for Qualifications)公布之《試務安排準則》(Instructions for Conducting Examinations5.15節「替代性地點」(alternative site)。