学校でのミソフォニア: 3 つの家族の物語
「ミソフォニアの学生になるのは簡単ではありません」
私たち全員がわずか5歳から経験することを奨励されている教育システムは難しいものであり、私たちは皆、幼少期を学校で過ごしたポジティブな記憶とネガティブな記憶を持っています。私たちの中には、学業、スポーツ、その他の課外活動に苦労した人もいました。私たちの中には、勉強は簡単であるかのように感じながらも、それでも他の悪魔と戦わなければならない人もいました。教育の旅は人それぞれ異なり、ミソフォニアの人も例外ではありません。と格闘した者として ミソフォニア in my school setting since the fifth grade, I can attest to the difficulty misophonia sets up for its sufferers in a class setting. Students have to deal with in-class snack times, gum-chewing, and a multitude of other repetitive sounds, all while attempting to follow along with their teacher’s instruction so they can succeed in class.
学生であることは簡単ではありません ミソフォニア.
それでも、ミソフォニアに苦しむ人が黙って苦しむ理由はありません。耳栓の使用や独立した試験スペース、その他の設備で集中力を高め、授業での成績を向上させたいと感じるミソフォンクの子どもたちのために、校内配慮が提供されます。しかし、多くの場合、こうした配慮が利用できるかどうかではなく、子どもが通う学校が特にミソフォニー(性別嫌悪)の生徒にそれを提供できるかどうかが問題です。
I interviewed three parents and their misophonic children, all of which had wildly contrasting experiences with their schools’ opinion of misophonia.
こちらが彼らの物語です。
ベサニーとローラ
“中学校の文化では、「違う」ように見えることが本当に困難になります。”
Bethany and her eighth-grade daughter, Lola, live in the Philadelphia area. Lola has dealt with misophonia for most of her life, but her sensitivity to certain sounds escalated in 2022 after her school classes transitioned back to the full-time studies that had been disrupted by the COVID-19 pandemic. The quiet atmosphere of online learning was a blessing in disguise for many misophonic students, so suddenly being thrust back into an educational environment flooded with repulsive, panic-inducing sounds had to be stressful. It certainly was for Lola, who was so distressed by her inability to concentrate in class and the return to the noisy school cafeteria that she sought out a professional evaluation for misophonia at the end of her seventh grade year.
彼女が訪れた聴覚専門医はすぐに中等度のミソフォニアと診断し、現在はミソフォニアに基づくものではありませんが、感覚過敏な子どもたちと関わることに精通したカウンセラーにかかっています。
それ以来、ローラの授業時間は依然として困難でしたが、彼女はトリガーを聞いたときに生じるフラストレーションを軽減するためにさまざまな方法を試してきました。彼女と母親は正式な配慮の要請を行っておらず、それが進めたいルートかどうかはわからない。それでも、クラスメートがローラをトリガーすると、ローラが席を変える許可を求めることがあり、ベサニーはローラが授業中に耳栓を着用できるかどうか尋ねる手紙を先生に書きました。これらの要求は両方とも認められました。それでも、ローラはミソフォニアについて助けを求めるのに苦労しています。
「中学校の文化では、『違う』ように見えることが本当に困難になっています」とベサニーは言います。
Like many many people with misophonia, Lola feels guilty about the flight-or-fight response she experiences when facing a troubling sound. When she was younger, she would often flee from whatever was triggering her misophonia, but as she has grown older, she has been fighting back more against what upsets her; worst of all, she feels as though she is in the wrong from feeling this way. This is simply not true. Those of us with misophonia can in no way control the emotions brought about by hearing our specific trigger noises but, especially in childhood, it can be hard to accept that and not blame yourself.
This guilt contributes to Lola’s nervousness to request formal accommodations. However, her mother Bethany says, “My take on her responses here is that she's struggling, but maybe not currently because of a lack of or willingness for accommodations.” The troubling truth is that there is no way to completely eliminate a student’s struggle with misophonia, though Lola’s use of small aids like ear plugs and seat-switching has helped her to some extent.
Lola says that the most bothersome times in the school day are during tests and quiet class time, when trigger noises are more conspicuous. It is these moments when she pulls out her ear buds without a second thought; her classmates treat her no differently for this, and she even feels comfortable doing so. She is also met with no resistance from her teachers when she asks to use them or switch seats, though she often does not explain why she needs these adjustments.
ベサニーはローラのミソフォニアはほとんど自分の中に隠されていると考えています。彼女の友人の何人かはそれを知っており、クラスメートや先生には隠していませんが、ミソフォニアについて明確に、正確に答えられないのが怖くて説明するのが気まずいと感じています。それでも、クラスメートたちは同級生の悩みを理解し、必要な人のための配慮があることも理解しています。学校で何度もボランティアをしたベサニーはこう語ります。「ローラが小さい頃にボランティア図書館員として働いていたとき、クラスに『今日は誰か欠席していますか?』と聞くと、子どもたちは『ああ、○○さんは今日ここにいますが、リソースルームにいます』とか『○○さんは補助員と一緒にいるので少し遅れるでしょう』と言っていました。彼らがその支えの微妙な違いをどれだけ理解していたかはわからないが、彼らは判断せずに事実として受け入れているようだった。」
母と娘の両方が、ミソフォニアに対する学校のアプローチについて何を変えるかと尋ねられたとき、ベサニーは、学校は物事をうまく処理したが、504 計画を追求するプロセスがもっと簡単であればいいのにと答えました。一方、ローラさんは、母親の言葉を借りれば、「指導カウンセラーのスペースや保健室とは別のもので、それほど『公式』だと感じなかったり、要求されたときに教師からより多くの質問をしたりするもの」に学校が関与することが有益であると述べています。ストレスを解消したり、静かにしたり、ホワイトノイズの中にいるなど、行ける空間です。これは現在、彼女の学校が持っているものではないが、教育委員会の会議で議論されている――高校に『小グループカウンセリングエリア』や『心身スタジオ』を設置する可能性などだ」と語った。
Bethany and Lola’s story is a prime example of an average school’s approach to misophonia in the classroom, but there are many schools that are unsure of what to do when faced with such a situation. Mother and daughter Chris and Hannah’s experience with their school is one such instance.
クリスとハンナ
“生徒がすべての介入に反応していないことを何度も証明しなければなりません。”
Chris and Hannah live in the Oregon area. Hannah is currently in the ninth grade, and her experience with misophonia in the classroom has fluctuated back and forth in terms of the quality of support she has been given from the past three schools she has been enrolled in.
Through fifth to eighth grade, she attended a small private school that went above and beyond attending to the needs of its students. Hannah’s class consisted of only ten or twelve students, so she could be open about her misophonia and kindly ask classmates to stop making trigger noises when she needed to. There were accommodations available for each student as well, such as the ability to move to other rooms when experiencing sensory overwhelm or simply in need of a quiet, safe environment.
Everything changed, though, when Hannah was about to begin ninth grade. Her school did not originally teach students her age but planned on doing so, which led to Chris seeking out district-funded private placement for Hannah’s ninth grade year. Hannah’s psychological state was then evaluated and, though the assessment did not mention anything regarding misophonia, Chris discussed the possibility of misophonia accommodations for her when going over the results with the school district. The school then explained that she and Hannah would have to agree to an individualized education plan (IEP) before they would even begin discussion on misophonia. They also mentioned how Hannah would likely be placed in a special education environment, as they believed her misophonia, sensory needs, and inflexibility were symptoms of autism spectrum disorder (ASD). The district was unswayed when Chris provided a specialized accommodation letter written by soQuiet’s founder, Cris Edwards, illustrating the definition and brain basis for misophonia and continued to suggest that Hannah would have to follow the IEP and special education route before accommodations would be made for her.
Chris has had previous negative experiences with school systems such as this. “My son went to an alternative school that spent the first six weeks teaching kids how to interact with people,” she says. “He didn't need that. He was just sick, being diagnosed with celiac, Hashimoto’s, and hypothyroidism. When it was time for him to leave, they begged us to stay for high school because he was a good influence. He didn't belong there, but they didn't know what else to do with him…I feel like when kids…don't fit into something school officials understand, they get penalized & tossed to special education or even alternative education.”
Chris disagreed with the school’s suspicion of ASD and decided to pursue outside testing offered by the school. She also got involved with an attorney, who unfortunately said Hannah’s needs were a “personal preference” and that the school district would not pay for her private placement. “You have to prove, over and over again, that your student doesn't respond to all of the interventions, etc,” Chris says. “ They have to go through a lot and, in my opinion, it's basically the district's decision or you can withdraw of course, if they feel they've exhausted all options and interventions, without any regard for the emotional cost to the student.
それ以来、ハンナは新しい学校にオープン入学しました。そこは一般教育の環境で、小規模なクラスと必要なときには別々の部屋が用意されていますが、ハンナは以前の学校が成功のために必要だと主張していた調停なしで素晴らしい成績を収めています。今に至るまで、彼女は特別支援教育を受けたことがなく、IEPや504プランも持っていませんが、彼女と母親は新しい学区にとても満足しています。「今の学校はトラウマに配慮し、包摂的で、良いところは言い尽くせないよ」とクリスは言う。「待機リストがあるはずだ。この地域でも一番知られていない秘密の一つだと思う。」
Unfortunately, there are many misophonic students who have had experiences like Hannah and Chris. It can be difficult for schools to misunderstand misophonia as a legitimate condition considering there is still so much more work that must be done before there are options for diagnosis readily available around the world.
Even so, there are also schools who are considerate towards misophonia and surpass expectations respecting their students. Father and daughter, Michael and Paige, in the Chicago area are part of a loving community such as this.
マイケルとペイジ
“今、これが何なのか分かりました!地元のミソフォニア専門医を探して、この問題を解決しましょう。その時、ミソフォニアの診断がもたらす泥沼に気づきました。”
Paige began having issues with misophonia at the end of seventh grade. Her and her father were unaware of misophonia’s existence at the time, so the symptoms she was exhibiting appeared to be related to an anger issue of some sorts. The problem with that diagnosis, though, was that it was unusual for Paige to act out in such a way.
マイケルは娘に何が起きているのか調べ始め、やがて「ミソフォニア」という言葉を発見しました。彼は隔離中に感受性に悩む女性が書いた記事を見つけ、それをペイジに見せた瞬間、彼女もまさに同じことを経験していることに気づきました。
ミソフォニアが実際の状態であることを明らかにすることは、多くの人々の闘争を理解する上で重要なステップです。「いいなと思いました!」とマイケルは言います。地元の「ミソフォニア」の医師を見つけて、この問題を処理しましょう。そのとき、私たちはミソフォニアの診断がもたらす泥沼に気づきました...ペイジは、現在の医師が診てもらうまで、私たち以外の誰からもミソフォニアと診断されたことはありませんでした。 最初に診察した医師の誰もそのことを聞いたことがありませんでした。」
Knowing what Paige was dealing with did not immediately fix the issues she was having at school. It wasn’t long before Michael decided to intervene and speak with the school nurse and counselor. He explained how, at home, Paige couldn’t listen to her father’s voice when he helped her with homework; she would be unable to sleep at night due to panic regarding incomplete schoolwork; she was unable to tolerate the two-minute drive from their house to the school in the morning. He emphasized how Paige was far more worried about her studies than her condition, as she was often taken to school in the middle of a misophonia-induced panic attack and was more concerned with being late rather than how she was feeling.
The school responded to Michael’s plea for help with care and understanding. There was no questioning her condition for its lack of being present in the DSM-5, and all they said Michael would have to do was give them a piece of paper explaining Paige’s misophonia to be added to her file. Michael then discovered another way to help his daughter, a signal system involving setting an index card on Paige’s desk whenever she needed to leave class for whatever reason, as a way of communicating her needs to her teachers. He planned to purchase index cards and a laminator himself but was surprised when Paige came home from school that day explaining her teacher had made her one the moment she suggested the idea.
ペイジのミソフォニアについて学校に通知され、インデックスカードが所定の位置に収容されたにもかかわらず、ペイジは学校で依然として問題を抱えていました。8年生のとき、彼女はクラスメートからのガムを噛む音に苦しんでおり、そのせいで週に数日学校に迎えに行かなければなりませんでした。彼女の知識豊富な教師たちはそれに応じて反応し、クラスでしっかりとしたガム禁止ルールを設定しましたが、生徒たちはペイジがこの新しいルールの原因であるとは知らされませんでした。残念ながら、ガムはまだ彼女のクラスにこっそりと取り入れられていました。マイケルによると、「子供たちはまだ授業中にこっそりガムを飲んだり食事をしたりしています。ペイジは1週間、5日間のうち4日間は学校を早めに下校する必要がありました。 逆に、翌週は5日間のうち4日間滞在した。 今年は合計で20回以上欠席しており、かつてのストレートAには今ではいくつかのCが散らばっています。 ペイジの欠席の授業時間にどう対処するかについての確固たる計画はまだありません。 今日から、彼らは授業中にガムを食べたり噛んだりした子供たちを拘留すると脅し始めた。 しかし、大きな発表の5秒後、ペイジは私に言いましたが、子供たちはすでに食事を隠していました。」
マイケルは娘の危機に対応した。彼はペイジの先生たち全員に、彼女が家で過ごした典型的な夜を詳しく綴るメールを書きました。以下は彼が書いた手紙の簡単な抜粋です。
「彼女は自由時間のほとんどを部屋でノイズキャンセリングヘッドホンをつけて過ごし、ホワイトノイズマシンをかけて、すべて自分を守るために過ごしている。彼女はヘッドホンをつけて一人で夕食をとります。彼女は部屋を出たり新しい部屋に入るたびに、まず「誰か食べてる?」と聞かずにはいられません。チアの練習やラクロス、CCD、教会、その他何かの場でも同じトリガーが現れます。妻がスタンドでガムを噛んでいるのを目撃したため、ラクロスの試合から離れなければならなかった。「良い夜」でも一緒にテレビを見ることも、同じ部屋にいることも、同じ車に乗ることもできません。家族で食事をとったのはもう1年以上ぶりです。映画にも、公園にも、休暇にも行き、近所を散歩したり、カードやボードゲーム、ビデオゲームを一緒にしたりもしません。ストレスを感じると、私の声に耐えられなくなります。この状況は進展し、ペイジと私は手話を学ぶことも考えるほどで、彼女が学校を休んで迷っているときに宿題を手伝えるようになった。彼女には一日のエネルギーが限られている、私たち全員がそうである。時には、寝る前に数分の会話と拳を合わせることが、私たちに期待できる最善のこともあります。そういう瞬間でさえ、ペイジが学校でトラブルが多すぎると消されるんだ。」
Michael associates Paige’s misophonia with a child wielding a lighter. When explaining his daughter’s struggles, he has his audience of teachers imagine a random student in their class coming up to them and burning their hand with the lighter, causing them to focus only on the sudden shock of pain the fire brings. The teacher’s fight or flight response would then be initiated but, even if they ran away from the child with the lighter, the student would still be there when they came back. Even worse, more students could start bringing lighters, and the teacher would have to protect themselves at all times, making it impossible to concentrate in the classroom. This, Michael says, is how Paige feels every school day.
Another way he looks at his daughter’s misophonia is relating it to a “noise allergy.” He says that, if Paige had a peanut allergy, she wouldn’t be given trail mix with only a few of the peanuts removed. The same concept applies to her misophonia; reducing only some of the gum-chewing from her class still puts her in the same position of danger she feels constantly, like the noise-equivalent of anaphylactic shock a student with a peanut allergy might experience.
In the email, Michael explains that Paige prefers to fight through her misophonic reactions, but doing so is not recommended as repeated exposure to triggers is far more harmful to people who experience misophonia than it is helpful. Worst of all, there is no amount of will-power or self-control that a person can exhibit to change their response to trigger noises. This means fighting through a reaction typically means suffering in silence and hoping the trigger ends soon.
「彼女は医師が処方した『宿題』ルーチンを毎日複数回行い、できるだけ早く就寝し、敬虔に薬を服用し、ミソフォニアを管理する過程で求められたことに何も疑問を抱かない。これらはすべて、学校にとどまるという目標を達成するためです」とマイケルは言います。「彼女の一生懸命の努力、努力のすべて、そして誰かがガムを噛むと、彼女はまだ部屋から追い出されます。それは完全に彼女のコントロールの及ばないことです。これを克服するために、彼女はこれ以上自分ではできないでしょう。ガムを噛むことをなくしてもペイジは治るわけではありませんが、ただ部屋にいられるようになります。それは彼女に、セラピーでの努力のすべてを活かし、『普通の』10代の生活を切り開く戦いの機会を与えてくれます。」
Michael’s email was met with teary responses from Paige’s teachers. The issue in Paige’s case up to this point seemed to not be with the school administration itself, but with Paige’s classmates’ lack of knowledge regarding why their teachers were placing such strange rules in class. It was then that Paige resolved to take matters into her own hands.
She decided the time had come for her to be open and honest with her classmates about her misophonia and what she goes through on a daily basis. The vice principal of her school then suggested they prepare a misophonia awareness week at the school, and Paige was determined to be as involved with it as possible.
Michael contacted soQuiet’s founder, Cris Edwards, and asked for assistance with preparations for the occasion. Together, they came up with an official misophonia color, poster designs, and a text-to-donate number, to name a few, and soon misophonia awareness week was under way. The school’s morning announcements listed facts about misophonia, and each grade level hosted misophonia-related trivia during their lunch period. Her teachers sat down with her, listened to her story, and offered to move her seats in class. All these activities led to the finishing event, in which Paige stood in front of her entire eighth grade class and revealed her misophonia diagnosis. “I was not nervous at all because I knew I was doing the right thing and helping people to become more aware of it. Most students were understanding and supportive,” Paige says.
After all of her hard work, Paige still struggles with her misophonia in a school setting, but so much positivity has been added to the world due to her actions. Not only has she become more confident, but she has given so much to the cause of misophonia awareness. She has even affected people outside of her school, including a woman who discovered Michael’s Facebook post about the fundraiser and realized she, too, had misophonia, as well the daughter of one of the school’s staff members who, after hearing all about the misophonia awareness week, decided to write a report on the condition for her college coursework. Even Paige’s mother’s coworker was affected, as she gathered the courage to reveal that she also has misophonia but has never told anyone before now.
The staff at Paige’s school, and her parents, never doubted Paige for a moment. She is considering making misophonia awareness week a recurring event for her school and also plans to pursue a science field to help people like her.
結論
Each person who has misophonia has their own story with their own unique challenges, but I believe the aforementioned three accounts of misophonia in the school setting attest to the bravery and inspiring nature of the new generation of people with this condition. For many people, many seemingly everyday activities are difficult for us, but still we persevere. We continue on, and we push through to accomplish what we desire.
ミソフォニアの研究が年月を重ねる中で、学校環境がミソフォニアの生徒にとってより安全な場所になるのを見るのが楽しみです。私は、ミソフォニアを持つすべての人が苦労せずに学べる未来が必ず訪れると心から信じています。それまでは、私たちの痛みに気づいていない人々に意識を提供し続けなければなりません。そうすれば、その未来が私たち全員のために現実となるかもしれません。