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Normalizing Listening and Spoken Language in Brazil

Andre de Botton wanted his daughter Marina to speak and hear, but Brazil’s official policy was sign language. They changed that.

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By Kirsten J. Ballard

Andre de Botton remembers clearly the day he discovered his daughter Marina couldn’t hear. She was nine months old and down for a nap.

“I fell in the room and made a racket by dropping all the diving gear I was carrying,” he says. “Marina didn’t flinch. My wife looked at that and she ran into the kitchen, got a pan and a spoon, and started beating the pan right beside Marina’s head, and she didn’t flinch. She continued not to flinch. So she’s deaf. She can’t hear anything. So that’s when we knew.”

He remembers wondering if Marina was going to be able to listen to music. His family loves music and plays music all the time. “That was one of the first things that crossed my mind,” he says. “[As a parent] your world falls apart. But I’m a rational guy and I’m used to dealing with problems and bad problems, so I started concentrating on pulling things together. What do we do now? What are the next steps? How much time do we have to make choices and decide?”

Andre and his family live in Brazil and when Marina was born, the official policy for the hearing impaired was Brazilian sign language. He says the quality of information, and options, were very limited. They learned about cochlear implants as an option, but that the rehabilitation centers in Rio de Janeiro were not very good. The only surgery team doing implementation at the time was in São Paulo, 500 kilometers away. “We knew it would cost us a lot of money,” Andre says.

He and his wife, Shelley, learned about an AG Bell convention in St. Louis a few months later. They booked a flight. As part of the trip, they saw rehabilitation programs in the United States and the infrastructure in place to help children with cochlear implants thrive. He says they broke down in tears.

The first session at the conference, Andre listened to Ken Lenvinson speak. Afterwards, he walked to the pulpit to introduce himself. “I said, “Listen, you’re going to have to be my friend because I need lots of directions. And we started out a beautiful friendship. One of the things that has been so gratifying along our journey was the amount of friendships we made. We found a lot of support everywhere and it’s amazing how many people put in effort.”

When Shelley and Andre returned to Brazil, they started preparing Marina for surgery. She received one implant when she was 18 months old, bi-lateral implants were not available at the time.

“It was expensive,” Andre says. “The surgery was out of town, insurance would not cover the copay or procedures. So that’s the other thing we did, we sued the health insurance company. We got the first cochlear implant surgery that was covered by a health insurance plan in Brazil,” he says.

This set a precedent for other families and eventually, it became law.

“But it was a struggle all the time,” he says. “We didn’t have anything close to the services we saw abroad in the United States or Argentina.”

Shelley quit her job in order to focus on Marina’s rehabilitation. Over the years, Shelley and Andre have continued to attend AG Bell conferences and  traded information with his network and friends all over the world.

“We met a lot of people at AG Bell conferences. It was amazing because everyone had similar difficulties being in poorer countries with limited budgets. We had to improvise things. We got a lot of ideas and we replicated them,” he says.

One idea he got was adding tennis balls to the bottom of chairs in Marina’s classes to limit the amount of noise made.

“The funny thing is, suddenly we go to the school and all the classrooms are using tennis balls, not just her class, because it really made a difference in the environment. It was amazing, and all the parents would pitch in, bringing used tennis balls. It moved us, how many people combined efforts,” Andre says.

Andre and Shelley worked with Marina’s teachers to better accommodate the school’s first student with cochlear implants. Before Marina, teachers taught facing the blackboard instead of speaking facing the students. The de Bottons were given the curriculum in advance so they could teach Marina some subjects in advance or at the rehab center to make her life a little easier in the classroom.

He also had to put pressure on the surgery teams and Cochlear to get better access to mapping. At the time, Marina had to travel to Sao Paulo to be mapped.

“It was very costly,” Andre says. “We learned that a lot of schools in the States had a mapping facility inside the school, so the child could be mapped, go to class, test the map, and come back to adjust. That was not possible for us, Marina would be mapped in an environment totally different from the one where she would face the challenges of studying, learning and interacting with her friends.”

It took years but Andre was able to convince the surgery team in Sao Paulo to travel to Rio once every three months for a big mapping day for all of the children.

“I was always taking things to the limit,” he says.

Marina is now a 21-year-old studying to be a veterinarian.

“We raised a very independent woman. Marina enjoys life to the limit,” he says. “She always has, since she was a kid. She was always happy, always smiling. She was up for anything. Hearing loss was never a problem for her.”

Normalizar la Escucha y el Lenguaje Hablado en Brasil

Andre de Botton quería que su hija Marina hablara y oyera, pero la política oficial de Brasil era la lengua de signos. Ellos cambiaron esta situación.

Por Kirsten Ballard

Andre de Botton recuerda perfectamente el día en que descubrió que su hija Marina no oía. Tenía nueve meses y estaba durmiendo la siesta.

«Tropecé en la habitación y armé un escándalo dejando caer todo el equipo de buceo que llevaba», cuenta. «Marina ni se inmutó. Mi esposa lo vio y corrió a la cocina, agarró una cacerola y una cuchara, y empezó a dar golpes junto a la cabeza de la niña, que siguió sin inmutarse. Tenía sordera. No podía oír nada. Así es como nos enteramos.

Recuerda que se preguntaba si Marina podría escuchar música. A la familia le encanta la música y la escuchan todo el tiempo. «Fue uno de los primeros pensamientos que se me pasaron por la cabeza», dice. «[Como progenitor] se me cayó el mundo encima, pero soy una persona racional, acostumbrada a lidiar con problemas y problemas graves, así que empecé a centrarme en la manera de salir adelante. ¿Qué hacemos ahora? ¿Cuáles son los próximos pasos? ¿De cuánto tiempo disponemos para considerar las opciones y decidir?».

Andre y su familia viven en Brasil y, cuando nació Marina, la política oficial para la discapacidad auditiva era la lengua de signos brasileña. La calidad de la información y las opciones eran muy limitadas. Se enteraron de que los implantes cocleares eran una opción, pero que los centros de rehabilitación de Río de Janeiro no eran muy buenos. El único equipo quirúrgico que realizaba implantes en aquel momento se encontraba en São Paulo, a 500 kilómetros. «Sabíamos que nos costaría mucho dinero», dice Andre.

Él y su esposa, Shelley, se enteraron de que unos meses más tarde se celebraría en Saint Louis un congreso de AG Bell y reservaron un vuelo. Como parte del viaje, conocieron los programas de rehabilitación de los Estados Unidos y la infraestructura existente para ayudar a avanzar a los niños con implantes cocleares. Asegura que rompieron a llorar.

En la primera sesión del congreso, Andre escuchó la presentación de Ken Lenvinson. A continuación, se acercó al estrado para presentarse. «Le dije: va a tener que ser mi amigo porque necesito muchas indicaciones. Así comenzamos una bonita amistad. Una de las cosas más gratificantes de nuestro viaje fue la cantidad de amistades que hicimos. Encontramos mucho apoyo en todas partes y es increíble el esfuerzo que realizan tantas personas».

Cuando Shelley y Andre regresaron a Brasil, comenzaron los preparativos para la intervención quirúrgica de Marina. Recibió un implante cuando tenía 18 meses, ya que los implantes bilaterales no estaban disponibles en aquellos momentos.

«Fue caro», cuenta Andre. «La intervención se realizó fuera de la ciudad y el seguro no cubría el copago ni los procedimientos. Esta fue otra de las cosas que hicimos: demandamos a la compañía del seguro médico. Conseguimos que un seguro médico en Brasil cubriese la primera operación de un implante coclear», explica.

Sentó un precedente para otras familias y, finalmente, se convirtió en ley. «Pero fue una lucha constante», asegura. «No teníamos nada parecido a los servicios que veíamos que se ofrecían en el extranjero, en los Estados Unidos o en Argentina».

Shelley dejó su trabajo para centrarse en la rehabilitación de Marina. A lo largo de los años, Shelley y Andre han seguido asistiendo a congresos de AG Bell e intercambiando información con sus contactos y amigos de todo el mundo.

«Hemos conocido a muchas personas en los congresos de AG Bell. Lo cierto es que todos atravesábamos dificultades similares al residir en países de renta baja con presupuestos limitados. Teníamos que improvisar. Nos facilitaron muchas ideas y las pusimos en práctica», dice.

Una de las ideas fue colocar pelotas de tenis en las patas de las sillas del aula de Marina para reducir el ruido que se hacía. «Lo curioso es que, de repente, nos encontramos con que en todas las aulas de la escuela se empezaron a utilizar pelotas de tenis, no solo en su aula, porque realmente suponía una gran diferencia en la calidad del entorno. Todos los padres colaboraron trayendo pelotas de tenis usadas y nos conmovió la cantidad de gente que aunó esfuerzos», dice Andre.

Andre y Shelley trabajaron con los maestros de Marina para adaptar mejor el aula a la primera alumna con un implante coclear de la escuela. Antes de Marina, los maestros impartían las clases mirando a la pizarra, en lugar de hablar de cara a los alumnos. Andre y Shelley recibían el plan de estudios con antelación para poder enseñar a Marina algunas asignaturas ellos mismos o en el centro de rehabilitación y facilitarle la vida en el aula.

Andre tuvo también que presionar a los equipos de cirugía y a Cochlear para conseguir un mejor acceso al mapa auditivo. En aquella época, Marina tenía que viajar a Sao Paulo para que le hicieran el mapa.

«Era muy caro», cuenta Andre. «Nos enteramos de que, en muchas escuelas de los Estados Unidos, se ofrecía un servicio de mapa internamente, por lo que se le podía realizar el mapa a un niño que asistiría después a clase, el mapa se probaría y se volvería a ajustar. Esta opción no estaba disponible en nuestro caso, por lo que a Marina se le realizaba un mapa en un entorno totalmente distinto el entorno en el que se enfrentaría a los retos de estudiar, aprender e interactuar con sus amigos».

Si bien tardó unos años, André consiguió convencer al equipo de cirugía de São Paulo para que se desplazara a Río una vez cada tres meses y dedicase un día a realizar mapas auditivos a todos los niños.

«Siempre he llevado todo al límite», dice.

Marina es actualmente una joven de 21 años que estudia veterinaria.

«Marina es una mujer muy independiente que disfruta de la vida al máximo», asegura. «Siempre lo ha hecho, desde niña. Siempre está contenta, sonriente y dispuesta a todo. La pérdida auditiva nunca le ha supuesto ningún problema».

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