By Meta Hsu
translated by Anita Huang from November 26, 2020, CommonWealth Education https://www.parenting.com.tw/article/5088072
What is selective mutism (SM)? What can parents do to help? Twelve years ago, when her child was diagnosed with SM, Anita could find little information on the web. She decided to look to the world for resources. This erstwhile helpless parent is now the translator of two books on SM, spreads awareness of SM in schools, and invites more people to listen to the stories of children with SM.
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| Demure and attention-averse, Anita advocates firmly for children with selective mutism. During the interview, she recalled how her journey has led her to see a different world (Photo by Yang, Huan-Shih). |
The chairperson of the Selective Mutism Association of Taiwan (SMAT), Anita used Oscar Wilde’s “The Happy Prince” to start her seminar.
The Happy Prince was a statue that could not talk, but he observed with his eyes and felt with his heart. One day, a swallow flew by and saw tears in the Prince’s eyes. It, and only it, knew the Prince had a tender heart. In the end, the statue was torn down, and everyone had forgotten the Prince.
Anita said, “If only people could hear the Happy Prince’s voice, maybe they would see the beautiful world inside his heart.”
Anita’s son was diagnosed with selective mutism (SM) in grade two. She recalled when the teacher suggested her son see a doctor, she wondered if he had a fever. It never occurred to her that a child she perceived as vivacious could be seen as withdrawn, nonvocal, and possibly autistic at school.
According to the SMAT’s website, SM is classified under anxiety disorders in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Individuals with SM speak freely under certain circumstances, but in other situations, are unable to utter a word due to intense fear. Some may be expressionless or even physically frozen. Although called “selective,” silence is not a choice made by them. The typical example is a child who is talkative at home but completely mute at school.
Soft-spoken and camera-shy, Anita was previously in the civil service, leading an uneventful life. However since the diagnosis of her son, she has embarked on an uncertain journey. Today, she is the translator of two books on SM, a public speaker spreading awareness of SM, and an advocate for the needs of children with SM. She has learned all she could to help her son, and has tried to let more people see the inner world of the silent “Happy Prince.”
Looking to the world for resources
Looking back, Anita could find very little information about SM twelve years ago. She did not know any other SM sufferers. “At the outset, it felt like my son was the only one in the world suffering from this condition,” she said. Majoring in foreign languages in university, Anita looked to the world for resources. As she was learning, she translated, took notes and posted them on her blog. Over the years, she has posted hundreds of articles and videos, and translated two books, The Selective Mutism Resource Manual and Selective Mutism In Our Own Words. She used what she learned along the way to help her son.
For example, Anita adopted the “small steps” approach. Her son first sent recordings of himself to his best friend to get used to the idea of being heard. After her son became comfortable doing this, he started listening together with the friend when the friend visited. Then Anita spoke with her son in the presence of the friend so that he could hear her son’s voice faintly. Anita said, “Because most people just need to open their mouths to speak, they find it difficult to imagine that my son needs to break it up into one hundred steps in the least pressured way possible and at his own pace.”
In 2017, Anita, other parents of SM children, teachers and therapists together launched the SMAT to advocate more strongly for people with SM. The next year, they invited Ruth Perednik, who had specialized in the treatment of SM for over 25 years, to speak in Taiwan. More than 600 people attended, including officials from the Ministry of Education and the Ministry of Health and Welfare. The issue of SM received unprecedented attention in Taiwan.
Anita is pleased to see resources for SM increase steadily in Taiwan. “In the past, even if you wanted to help, you didn’t know what to do. Now there are books, articles and videos on the Internet. It’s like creating oases in the desert.” she said.
Breaking free from restraints
When asked why she stepped forward to advocate for people with SM, Anita said, “My support is not enough. My child crucially needed help from the surrounding environment.”
The school environment is the most difficult for children with SM. They are timid and mute in school but a very different person at home. Without a proper understanding, teachers may take it personally or may suspect abuse at home. Anita said the needs of children with SM may seem counterintuitive to teachers. For example, teachers might think they need “more practice” and so demand them to speak up more often. Anita’s son had been withheld from recess until he finished reading aloud. These experiences actually make their anxiety worse.
Bonny Lin is a counseling psychologist at Seeing Counseling Center, whose specialties include treating selective mutism. She used to work at municipal student counseling centers. She suggested teachers consider alternative ways of communication. For example, when students are not yet able to say good-bye, they may nod, wave their hand, write notes, or gradually progress to lip sync. She added that the pressure to talk only intensifies anxiety. When teachers understand that their inability to speak is an automatic physiological mechanism, they can better help students.
The education system as a whole has yet to better accommodate SM students. Anita was worried that the lack of understanding at school might cause his son to associate learning with fear. Therefore, she decided to homeschool her son, starting from grade three until grade twelve. The current experimental education and special education laws both stipulate schools are obligated to provide resources to students with special needs. But Anita recalled at that time her son was the first homeschooled student to make a request to the local education board for the use of special education resources in school.
She remembered thinking, “Certainly there are no regulations allowing my son to do that, but there are no regulations saying he can’t either.” When the present system did not provide what her son needed, Anita would not give up advocating. Another instance occurred during the entrance exam to high school. Anita’s son would become frozen and unable to write at the unfamiliar test site. She negotiated with the authorities to let her son take the test at an accustomed site.
Anita has had much feedback along the way. She encountered psychiatrists saying they had never treated any SM patients during thirty years of practice and government officials admitting they had had little knowledge about SM. Anita said with a tint of sadness, “It seems that people who bear the brunt of SM need to be at the forefront, telling others what we need, what the difficulties are, and to create resources on our own.”
A slight adjustment can be empowering
In fact, the founding of the SMAT and Ruth Perednik’s seminar happened just when Anita was going through a deep abyss in life. “I will always remember the day my son became completely mute.” The end of 2015 is as clear as yesterday for Anita. She lost the privilege of hearing her son’s voice. One year later, her son started whispering but only when alone with Anita at home. All previous hard work had come to naught.
Unexpectedly, Ruth brought a turning point for Anita’s son. She taught him how to break up the process of uttering a sound into tiny steps. Gradually Anita’s son regained his voice. Ruth then encouraged him to make videos talking about his learning, while also regularly discussing with him like a life mentor.
Anita said initially entering university was not the objective of her son’s homeschooling. After all, at each transition between education levels, difficulties are expected and no accommodations are assured. Therefore, her son just followed his own passion. For example, he is interested in math, programming and language, so he took online courses and took notes. He also logged on to Duolingo on a daily basis, and would practice speaking into computer before he became completely mute.
Taking advice from fellow homeschoolers, Anita’s son applied for university through a special admission program for outstanding students. Although he had not participated in any competitions and could not speak in interviews, the universities assessed his online course certificates, hundreds of pages of notes, and home-made videos, as well as adjusting their interviewing process. These accommodations gave him unprecedented opportunities. Finally, he was accepted by four universities.
Having accompanied her son through the process, Anita wrote in her blog, “Even a slight adjustment has unimaginable and far-reaching power.”
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| Six young people designed postcards to raise funds for the Selective Mutism Association of Taiwan. On the postcards are their own drawings and words, such as “Just because you don’t see it doesn’t mean it doesn’t exist. Some voices cannot be heard with ears. You have to listen with your heart” and “Do you hear what I cannot say?” (Photo by Yang, Huan-Shih). |
Listen to SM people with your heart
During the interview, Anita said “thanks” repeatedly: thanks to the pioneers who made homeschooling possible, thanks to those making exam adjustments, thanks to schools and departments for offering help, etc. However, in the eyes of Bonny, who is also a SMAT colleague, Anita has inspired many people. She often answers questions raised in online forums late into the night. She is also creative and visionary, tirelessly thinking about what the SMAT can do.
Another phrase Anita often said in the interview is “what choice do I have except to press ahead?” She said she did not intend to push for any action in the beginning. Mired in difficulties and without resources, she was merely trying her best to help her son. However having walked such a long, lonely and hard path, she can’t help but hope children in the future will not suffer as much.
Whenever Anita shares her son’s story, she asks her son first. Her son sometimes comments that the story is from a mother’s perspective. She said, “I guess his own perspective is probably more hilarious.” Perhaps mother and son have different versions of the story, but in one of her son’s videos, he seems to echo Anita by saying, “What I went through isn’t anybody’s fault. But I hope in the future children will be better understood and given more opportunities.”
On a Saturday in early November, Anita spoke about SM for about two hours at a seminar in Taipei. Among the audience were teachers who had travelled a long way here by train and parents of SM children. They took lots of notes and fervently exchanged ideas and experiences.
On one of the postcards designed by the young people is written, “Just because you don’t see it doesn’t mean it doesn’t exist. Some voices cannot be heard with ears. You have to listen with your heart.” Anita’s journey continues after all these years. She will lead more people to listen to the stories of SM people.
