Misofonía en la escuela: tres historias familiares
"No es fácil ser estudiante con misofonía"
El sistema educativo por el que todos somos alentados a pasar desde los cinco años es complicado, y todos tenemos nuestros recuerdos positivos y negativos de pasar nuestra infancia en una escuela. Algunos de nosotros luchamos con lo académico, los deportes y otras actividades extracurriculares; Algunos de nosotros sentimos que estudiar era muy fácil, pero aún así teníamos que luchar contra otros demonios. El viaje educativo de cada persona es diferente, y las personas con misofonía no son una excepción. Como alguien que luchó con misofonía 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.
No es fácil ser estudiante con misofonía.
Aun así, no hay ninguna razón por la que una persona que lucha contra la misofonía deba sufrir en silencio. Se pueden proporcionar adaptaciones en la escuela para niños misofónicos que sienten que el uso de tapones para los oídos, espacios de prueba separados y otras comodidades les permitiría concentrarse y desempeñarse mejor en clase. Sin embargo, la pregunta a menudo no es si hay adaptaciones como estas disponibles, sino si la escuela a la que asiste el niño está dispuesta a proporcionarlas a estudiantes misofónicos en particular.
I interviewed three parents and their misophonic children, all of which had wildly contrasting experiences with their schools’ opinion of misophonia.
Aquí están sus historias.
Bethany y Lola
“La cultura de la escuela intermedia hace que parecer "diferente" sea realmente un desafío,”
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.
El audiólogo al que acudió pronto le diagnosticó misofonía moderada, y ahora ve a un consejero que, aunque no se basa en la misofonía, está bien versado en el trabajo con niños que tienen sensibilidades sensoriales.
Desde entonces, el tiempo de clase para Lola sigue siendo difícil, pero ha probado diferentes métodos para disminuir la frustración que conlleva escuchar sus desencadenantes. Ella y su madre no han hecho una solicitud formal de adaptaciones y no están seguras de si esa es una ruta que les gustaría seguir. Aun así, ocasionalmente le han pedido permiso a Lola para cambiar de asiento cuando sus compañeros de clase la están provocando, y Bethany le escribió una carta a su maestra preguntando si Lola puede usar tapones para los oídos en clase. Ambas solicitudes fueron concedidas. Aun así, Lola lucha por pedir ayuda sobre su misofonía.
"La cultura de la escuela intermedia hace que parecer 'diferente' sea realmente un desafío", dice Bethany.
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.
Bethany cree que la misofonía de Lola es, en su mayor parte, reservada para sí misma. Varios de sus amigos lo saben, y ella no se lo oculta a ningún compañero de clase o maestro, pero se siente incómoda explicando su misofonía por temor a no poder hablar con claridad o responder con precisión preguntas al respecto. Aun así, sus compañeros de clase son comprensivos con los problemas de sus compañeros y son conscientes de que hay adaptaciones disponibles para quienes las necesitan. Bethany, quien se ha ofrecido como voluntaria en la escuela varias veces, dice: "Trabajando como bibliotecaria voluntaria cuando Lola era más joven, recuerdo que a veces preguntaba a una clase cuando llegaban: '¿Alguien está ausente hoy?' y los niños a menudo decían: 'Oh, fulano de tal está aquí hoy, pero está en la sala de recursos' o 'Fulano de tal va a llegar un poco tarde porque está con su ayudante'. No sé cuánto entendieron los matices de esos apoyos, pero simplemente parecían aceptarlos como hechos, sin juzgar".
Cuando se les preguntó a la madre y a la hija qué cambiarían sobre el enfoque de su escuela sobre la misofonía, Bethany respondió que la escuela manejó bien las cosas, pero que desearía que el proceso de seguir un plan 504 fuera más sencillo. Lola, por otro lado, dice que sería beneficioso para su escuela involucrarse, en palabras de su madre, con "algo que estuviera separado del espacio del consejero o la oficina de la enfermera y que no se sintiera tan 'oficial' o creara más preguntas de los maestros cuando se lo solicitaran. Un espacio al que uno podría ir para descomprimir/estar tranquilo/estar en ruido blanco, etc. Esto no es algo que su escuela tenga actualmente, aunque se ha discutido en las reuniones de la Junta de Educación: la idea de 'áreas de asesoramiento para grupos pequeños' o un posible 'estudio de mente y cuerpo' en la escuela secundaria".
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.
Chris y Hannah
“Tienes que demostrar, una y otra vez, que tu estudiante no responde a todas las intervenciones.”
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.
Desde entonces, Hannah se ha inscrito en una nueva escuela. Es un entorno de educación general con clases pequeñas y salas separadas disponibles para los estudiantes cuando las necesitan, y Hannah lo está haciendo increíble sin ninguna de las mediaciones que su antigua escuela afirmó que necesitaba para tener éxito. Hasta el día de hoy, nunca ha estado en educación especial ni ha tenido un IEP o un plan 504, y ella y su madre están bastante satisfechas con el nuevo distrito. "La escuela actual está informada sobre el trauma, es inclusiva, no puedo decir suficientes cosas buenas al respecto", dice Chris. "Debería tener una lista de espera. Creo que es uno de los secretos mejor guardados de la zona".
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.
Michael y Paige
“¡Sabemos lo que es esto ahora! Busquemos al médico local de misofonía y solucionemos esto. Fue entonces cuando nos dimos cuenta del atolladero que trae un diagnóstico de misofonía.”
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.
Michael comenzó a investigar lo que podría estar pasando con su hija, y pronto descubrió el término "misofonía". Encontró un artículo escrito por una mujer que luchaba con la sensibilidad durante la cuarentena, y en el momento en que se lo mostró a Paige, ella se dio cuenta de que estaba experimentando lo mismo.
El descubrimiento de la misofonía como una condición real es un paso crítico para comprender las luchas de muchas personas. "Pensé, ¡genial!", dice Michael, "¡Sabemos lo que es esto ahora! Busquemos al médico local de 'misofonía' y atendámonos de esto. Fue entonces cuando nos dimos cuenta del atolladero que trae un diagnóstico de misofonía... Paige nunca fue diagnosticada con misofonía por nadie más que por nosotros mismos hasta su médico actual. Ninguno de nuestros médicos que vimos al principio había oído hablar de él".
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.
Incluso con la escuela siendo notificada sobre la misofonía de Paige y la adaptación de su tarjeta de índice en su lugar, Paige todavía tenía problemas en la escuela. En octavo grado, estaba luchando con el sonido de masticar chicle de sus compañeros de clase y tuvo que ser recogida de la escuela varios días a la semana debido a eso. Sus maestros informados reaccionaron en consecuencia y establecieron una regla firme de no chicle en sus clases, aunque a los estudiantes no se les dijo que Paige era la causa de esta nueva regla. Desafortunadamente, el chicle todavía se coló en sus clases. Según Michael, "Los niños todavía están tomando chicle y comiendo en clase, y una semana Paige tuvo que salir temprano de la escuela cuatro de los cinco días. Por el contrario, la semana siguiente se quedó cuatro de los cinco días. En total, tiene más de veinte ausencias este año, y sus A anteriores ahora están llenas de algunas C. Todavía no hay un plan firme sobre cómo manejar el tiempo de clase perdido de Paige. A partir de hoy, comenzaron a amenazar a los niños con detenciones por comer / masticar chicle en clase. Sin embargo, Paige me dijo cinco segundos después del gran anuncio, los niños ya estaban ocultando su comida".
Michael respondió a la crisis de su hija en consecuencia. Escribió un correo electrónico a todos los maestros de Paige detallando una noche típica para ella en su hogar. El siguiente es un breve extracto de la misma carta que escribió:
"Pasa la mayor parte de su tiempo libre en su habitación con auriculares con cancelación de ruido, con máquinas de ruido blanco sonando, todo para 'protegerse'. Cena sola con los auriculares puestos. No saldrá de su habitación ni entrará en una nueva habitación sin antes preguntar "¿Alguien está comiendo?" Cuando está en la práctica de porristas, o lacrosse, o CCD, iglesia o cualquier otra cosa, surgen los mismos desencadenantes. Tuvo que retirarse de un juego de lacrosse porque vio a mi esposa, en las gradas, masticando chicle. Incluso en una "buena" noche no podemos ver la televisión juntos, no podemos estar juntos en la misma habitación, no podemos estar juntos en el mismo coche. No hemos comido una comida familiar juntos en más de un año. No vamos al cine, a los parques, a las vacaciones, a los paseos alrededor de la cuadra, no jugamos a las cartas, a los juegos de mesa o a los videojuegos juntos. Cuando está estresada, no puede soportar el sonido de mi voz. Esto progresó hasta el punto en que Paige y yo consideramos aprender lenguaje de señas para que al menos pudiera ayudarla con la tarea cuando faltara días a la escuela y se sintiera perdida. Ella tiene un suministro finito de energía por día, como todos nosotros. A veces, lo mejor que podemos esperar son unos minutos de conversación y un choque de puños antes de acostarnos. Incluso esos momentos se eliminan cuando Paige tiene demasiados incidentes en la escuela".
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.
"Realiza múltiples sesiones de rutinas de 'tarea' prescritas por el médico todos los días, se acuesta lo más temprano posible, toma medicamentos religiosamente y nunca cuestiona nada de lo que se le pide que haga en el curso del manejo de su misofonía. Todo esto es para lograr el objetivo de permanecer en la escuela", dice Michael. "Todo su arduo trabajo, todo su esfuerzo, y todavía se ve obligada a salir de la habitación cuando alguien mastica chicle, una cosa completamente fuera de su control. No puede hacer más por sí sola para superar esto. Eliminar la masticación de chicle no va a curar a Paige, pero le permitirá simplemente quedarse en la habitación. Le da la oportunidad de luchar para poner en práctica todo su arduo trabajo en terapia y forjar una vida adolescente 'normal'".
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.
Conclusión
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.
A medida que pasan los años de investigación sobre la misofonía, me emociona ver que el entorno escolar se convierte en un lugar más seguro para los estudiantes misofónicos; Realmente creo que algún día habrá un futuro en el que todas las personas con misofonía puedan aprender sin lucha. Hasta entonces, debemos continuar brindando conciencia a aquellos que no son conscientes de nuestro dolor, por lo que tal vez ese futuro se convierta en una realidad para el mejoramiento de todos nosotros.