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(de Primavera 2006 Ver/Oír)

English version of this article (Versión Inglesa)

Por Mary Sue Welch, Miembro del Directorio de la TSBVI, Dallas, TX

Resumen: Un Miembro del Directorio de la TSBVI comparte sus recuerdos de esta escuela y reflexiona sobre la forma en que ellos han tenido influencia en la persona que ella es hoy día.

Palabras Clave: familia, ciegos, discapacidades visuales, experiencia personal, Historia de la TSBVI.

Nota del Editor: El siguiente es un extracto de la contribución de Mary Sue a la página dedicada a los Recuerdos del Sesquicentenario en el sitio web de la TSBVI. Lo invitamos a leer por completo su fascinante artículo en http:www.tsbvi.edu/school/sesq/memories.htm. ¿Tiene alguna anécdota divertida sobre la escuela? ¿Se encariñó con alguno de los profesores que tuvo aquí? Por favor, contribuya con su propia historia o con una historia sobre sus amigos o familiares que pudieran haber asistido a esta escuela.


Mi vida no siempre ha sido un cuento de hadas como es hoy. Actualmente, vivo en el piso número 23 de un edificio muy alto en el centro de Dallas con una maravillosa vista de la ciudad. Mi esposo (que también es ciego) tiene un buen trabajo y compró un automóvil Mercury Monterrey nuevo, de color negro, que es conducido por un maravilloso joven. Este joven me lleva de compras y facilita nuestras vidas de muchas maneras. No, no siempre he tenido una vida así.

Fui la hija ciega de una familia blanca, vidente, de clase media de Huntsville. Sí, mi madre, mi padre, mi hermano Walter Charles, mi medio hermano Tommy y mi media hermana Marie eran todos videntes. Tenían otros problemas, pero ninguno era ciego. Mi madre dice que mi nacimiento fue tormentoso y que ella experimentó grandes dolores físicos. Muy a mi pesar, ella nunca me describió como un bebé hermoso. En realidad, me dijeron que tenía una tez azulada y que nunca tuve los ojos abiertos cuando me llevaban a mi madre en el hospital.

Mi madre simplemente pensó que estaba dormida todo el tiempo, pero mi padre se preocupó. El día que llegué a casa, mi padre me llevó al dormitorio y me alumbró en los ojos con una linterna. Mi ojo derecho respondió, pero el izquierdo no hizo absolutamente nada. Después de compartir sus preocupaciones con mi madre, ellos se separaron. Cuando tenía seis semanas de edad, comenzamos las visitas a los oftalmólogos que duraron hasta que tenía tres años, cuando un médico de Austin le dijo a mis padres que no se podía hacer nada respecto a mi visión. Les recomendó que planificaran enviarme a la Escuela para los Ciegos de Texas y que me preparara para mi vida como una persona ciega. Realmente, creo que las cosas fueron más fáciles para mis padres en ese momento porque sabían qué esperar.

Me fui de casa para asistir a la Escuela para los Ciegos de Texas el 26 de septiembre de 1954, el día después de cumplir seis años. Temprano ese domingo en la mañana, mi abuela materna tuvo un derrame cerebral. Mi madre estaba desolada, pensando que perdía a su madre y a su niña. A pesar de eso, mis padres me pusieron a mí y a mi equipaje en el automóvil y me llevaron a Austin. Fue un acto muy generoso que les agradezco hasta hoy.

Les dijeron que no podrían visitarme ni llamarme durante tres semanas. Les explicaron que yo necesitaría ese tiempo para aclimatarme a mi nuevo entorno. Me dejaron jugando en los balancines con mi primer amigo en la escuela. Todo estuvo bien hasta la noche, pero entonces comencé a extrañar mi casa. Los padres de turno en la residencia no eran muy cariñosos, así que lloré hasta que pude quedarme dormida sin recibir consuelo de nadie. No se permitía que los niños salieran de la cama, pero ellos habrían ido a consolarme si hubieran podido. Los padres de la residencia pensaron que sería mejor que aprendiera por medio del sufrimiento y así lo hice.

A la mañana siguiente, realmente comencé mi entrenamiento para adquirir independencia ya que aprendí a hacer mi cama. Me imagino que fue un desastre, pero ahora puedo hacerla bastante bien.

Mi profesora de primer grado tenía una voz muy hermosa. Ella era tranquila y amable y la quise mucho. Comenzó a trabajar conmigo en Braille de inmediato. Me encantó y aprendí rápido. Todavía me gusta el Braille y estoy tomando un curso para ser transcriptora de Braille certificada ahora que ya soy vieja.

Recuerdo mi primera visita a la biblioteca de la escuela como un hecho que marcó mi vida. Estaba fascinada con tantos libros en un solo lugar. Con el transcurso de los años, pasé gran parte de mi tiempo estudiando y leyendo en la biblioteca. Los libros han seguido siendo una verdadera fuente de placer para mí durante toda mi vida. Agradezco a nuestra maravillosa bibliotecaria por incentivar mi amor por la lectura y mi deseo por saber más sobre los demás. Probablemente ella estaría un poco desilusionada si supiera que los libros que más me gustan son las novelas de misterio y las con tramas legales. Creo que ella habría querido que me gustaran los clásicos.

Aunque nunca fui buena en música, tomé lecciones de piano durante 7 años. Mi profesora de piano siempre me incentivó. Me decía que aunque nunca pudiera tocar bien, aprendería mucho sobre la confianza en mí misma y la serenidad gracias a mi entrenamiento musical. Pienso que fue a partir de esos días que desarrollé el gusto por hablar en público. Mi música también logró mi aceptación como una adolescente en mi grupo de Rainbow Girls. Yo era músico y eso era mucho para las niñas que no podían tocar ningún instrumento. A propósito, ingresé a las Rainbows con la ayuda de mi profesora de cocina en la escuela. Le mencioné que estaba interesada y ella me presentó a sus amigas que me auspiciaron.

Me gradué de la Escuela para los Ciegos de Texas en 1966. Asistí a la escuela durante unos años muy interesantes. Más que las grandes aceras que dividen el campus en la mitad, separando el lado de las niñas del de los niños. Incluso dentro del edificio principal, había escaleras y fuentes de agua separadas para los niños y las niñas. Y por supuesto, nos sentábamos en lados separados en el auditorio. Hasta que tuve 16 años, tenía miedo de beber de la fuente de agua de los niños por temor a quedar embarazada. Debíamos tener mucho cuidado de tomarnos las manos en el pasillo porque si el director nos veía hacer eso, la pareja daría mucho que hablar. Teníamos una calificación en conducta y una vez tuve una C simplemente porque bebí de la fuente de agua equivocada. ¿O fue porque me sorprendieron besándome en la fuente? Fue una de las dos. De todas maneras, tuve problemas en casa y en la escuela.

Cuando pienso en mis días en la Escuela para los Ciegos de Texas, recuerdo todo tipo de sonidos y aromas. Aún percibo algunos de ellos cuando visito la escuela. El edificio principal aún huele a libros – no sólo a libros – a libros en Braille. El timbre no es exactamente el mismo que cuando yo era estudiante, pero me encanta oírlo sonar. Aunque sé que puedo usar cualquiera de las escaleras, sigo usando la “escalera de las niñas”. ¡Sólo esa es la correcta!

Recuerdo especialmente las mañanas de invierno. Usábamos radiadores de vapor para calefaccionar nuestros dormitorios. Muy temprano en la mañana me despertaba el sonido de esos radiadores mientras se calentaban. Sonaban con un ruido estrepitoso y luego silbaban y me encantaba oír todo ese ruido. Me sentía segura. Me aferraba a uno de mis libros en Braille y leía hasta que sonaba el timbre para despertarnos.

La primavera era casi tan buena. Teníamos reuniones los lunes, miércoles y viernes en el auditorio de la escuela. Los miércoles eran nuestros favoritos. Casi siempre teníamos recitales de estudiantes ese día. Las ventanas del auditorio estaban abiertas. Los pájaros cantaban y nuestros amigos hacían sus presentaciones. Eran momentos maravillosos para todos nosotros.

Como una pequeña niña en la escuela, me encantaban los días de lluvia. A veces los padres de la residencia nos preparaban dulces de chocolate o palomitas de maíz. Escuchábamos historias en la radio o simplemente jugábamos adentro. Teníamos pequeñas sillas en el dormitorio justo de nuestro tamaño. Aún podía ver un poco entonces y recuerdo que estaban pintadas de color rojo, azul, verde y amarillo. Reuníamos todas las sillas en la parte de atrás del dormitorio y construíamos un bote – al menos lo que percibíamos como un bote.

Los sábados asoleados, a menudo íbamos a patinar afuera o jugábamos juegos como Red Rover, Red Rover. Esto sólo podía suceder después de que terminábamos nuestras tareas domésticas. Siempre teníamos que hacer nuestras camas, sacudir los muebles, limpiar el piso y limpiar los radiadores. No nos desagradaban esos trabajos. Nos daba la sensación de estar a cargo de nuestros dormitorios. Al menos eso era lo que yo sentía. Aprendíamos responsabilidad y cómo cuidarnos nosotros mismos y nuestros hogares.

En mi último año en la escuela tuvimos a un nuevo superintendente. Bill Allen había sido el superintendente por 40 años y jubiló el año en que nuestra escuela fue integrada. El nuevo superintendente tenía a sus propios niños y las cosas en el campus cambiaron enormemente. La integración se realizó sin dificultades, al menos yo no supe que hubiera dificultades hasta hace poco, cuando leí la historia publicada aquí por Gene Brooks. Simplemente estábamos felices por conocer a algunos chicos nuevos. Por primera vez tuvimos un Consejo de Estudiantes y votaron por mí como presidente. También tuvimos por primera vez un anuario y yo fui co-editora de The Wildcat. También gané el prestigioso premio Crisco por mis habilidades para cocinar y para coser.

La graduación fue triste y emocionante, como lo es para todos los jóvenes alrededor del mundo. Planeaba ir al college, pero estaba terriblemente asustada de que nunca pudiera aprender a movilizarme por el campus. Aunque había sido miembro de la Sociedad de Honor Nacional, no tenía mucha confianza en mi habilidad de aprender sin el apoyo de la escuela. Además, estaba enamorada, así que cuando tuve la oportunidad, opté por el amor y me casé poco después de cumplir 18 años.

Tengo la fortuna de participar en el Directorio de la TSBVI. Me da un gran placer compensar en algo a la escuela que me enseñó independencia y confianza en mí misma. Aquellos viejos edificios me refugiaron y creo que muchos de nuestros profesores realmente nos amaban. Este lugar, esos tiempos, me ayudaron a ser lo que soy hoy día.

¡Esa es la pregunta! ¿Quién soy? Soy una profesional, una esposa, una madre y una persona ciega. ¡Soy yo! Y eso me hace muy feliz.

(Originally published in Spring 2006 SEE/HEAR Newsletter)

Versión Español de este artículo (Spanish Version)

By Mary Sue Welch, TSBVI Board Member, Dallas, TX

Abstract: A TSBVI Board Member shares her memories of TSBVI and reflects on how they had an influence on who she is today.

Key words: family, blind, visually impaired, personal experience, TSBVI History


Mine has not always been the fairy tale life I now enjoy. Now I live on the 23rd floor of a high-rise in downtown Dallas with a marvelous view of the city. My husband (who is also blind) actually has a job and provides us with a new Mercury Monterey van—black in color—with a wonderful young man to drive it. This young man takes me shopping and makes our lives easier in a number of ways. No, it hasn't always been this way for me.

I was born the blind child of a middle-class, sighted, white family in Huntsville. Yes, my mother, my father, my brother Walter Charles, my half brother Tommy and my half sister Marie were all sighted. They had other problems, but being blind was not among them. Mother said my birth was tumultuous with great physical pain for her. Much to my dismay, she never described me as a beautiful newborn. Rather, I was told that my hue was bluish and my eyes were never opened when I was brought to her in the hospital.

Mother just thought I was sleepy all the time, but my father was worried. On the day of my arrival home, Daddy took me into the bedroom and shined a flashlight in my eyes. My right eye responded, but the left did nothing at all. Upon sharing his concerns with my mother, she fell apart. When I was six weeks old, we began the round of eye doctors lasting until I was age three when a doctor in Austin told my parents that nothing could be done about my vision. He advised them to plan to send me to The Texas School for the Blind when I was six and to prepare for my life as a blind person. I actually think that things became easier for my parents then because they knew what to expect.

I left home to attend the Texas School for the Blind on September 26th, 1954, the day after I turned six. Early on that Sunday morning, my grandmother on my mother's side had a stroke. My mother was devastated, feeling that she was losing both her mother and her baby. In spite of that, my parents loaded me and my stuff into the car and took me to Austin. It was a very unselfish act and I am grateful to them even today.

They were told that they could not come to see me or call me for three weeks. It was explained that I needed this time to become acclimated to my new surroundings. They left me at the swings playing with my first friend at school. I was okay until nighttime, but then the homesickness swept over me. The houseparent on duty was not the loving type, so I cried myself to sleep without comfort from anyone. The kids were not allowed out of bed, but they would have comforted me if they could. The houseparent felt I would do better to tough it out. That's what I did.

The next morning, my training in independence truly took off as I learned to make my bed. I bet it was a sight, but I can whip one together pretty well now.

My first grade teacher had the most beautiful voice. She was quiet and kind and I loved her dearly. She started working with me on Braille right away. I loved it and learned fast. I still love Braille and am taking a course to be a certified Braille transcriber now at my old age.

I remember my first trip to the school library as a real turning point in my life. I was fascinated with all those books in one place. As the years went by, I spent much of my time studying and reading in the library. Books have remained a true source of pleasure for me all my life. I credit our wonderful librarian with encouraging my love of reading and my desire to know more about others. She would probably be a bit disappointed to learn that I love mystery and legal thrillers best. I think she would have wanted me to like the classics.

Though I was never a good musician, I took piano lessons for 7 years. My piano teacher was always encouraging. She told me that even if I never played very well, I would learn much about self-confidence and poise from my musical training. I think it was from those days of performing that I developed a love of public speaking. My music also gained acceptance for me as a teenager in my Rainbow Girls assembly. I was a musician and that was a big deal to most of those girls who couldn't play at all. By the way, I got into Rainbows through the help of my cooking teacher at school. I mentioned that I was interested, and she introduced me to friends of hers who sponsored me.

I graduated from the Texas School for the Blind in 1966. I attended the school during some very interesting years. More than the big sidewalk split the campus in half separating the girl's side from the boy's side. Even inside the main building, there were separate water fountains and stairs for the girls and boys. And of course we sat on separate sides in the auditorium. Until I was about 16, I was afraid to drink from the boy's water fountain for fear of becoming pregnant. We had to be very careful about holding hands in the hallway because if the principal saw us doing that, the couple was in for a long talking to. We got grades in deportment, and once I got a C simply because I drank from the wrong water fountain. Or was it that I was caught kissing at the fountain? It was one or the other. Anyway, I was in trouble at home and at school.

When I think about my days at The Texas School for the Blind, I remember all kinds of sounds and smells. Some of them are still there when I return to visit. The main building still smells like books—not just any books—Braille books. The bell is not exactly the same as it was when I was a student, but I love hearing it ring. Although I know I am welcome to use any stairway I want, I still use the "girl's stairs". It's only right!

I remember winter mornings especially well. Our dorms were heated by steam radiators. In the very early morning I would awaken to the sound of those radiators heating up. They would bang and clang and hiss and I loved hearing all that noise. I felt safe. I would grab one of my Braille library books and read until the wake-up bell rang.

Spring was just as good. We had assemblies on Mondays, Wednesdays, and Fridays in the school auditorium. Wednesdays were our favorites. We would almost always have student recitals that day. The windows in the auditorium would be open. Birds would be singing and our friends would be performing. It was a wonderful time for all of us.

As a small child at school, I loved rainy days. Sometimes our houseparents would make fudge or popcorn for us. We would listen to stories on the radio or just play inside. We had little chairs in the dorms just our size. I could still see a little bit then and I remember that they were painted red, blue, green and yellow. We would gather all the chairs in the back of the dorm and build a boat—at least our view of a boat.

On sunny Saturdays, we often roller skated outside or played games like Red Rover, Red Rover. This could only happen after we finished our chores. We were always required to make our beds, dust our furniture, dust mop our floors, and clean the radiators. We didn't dislike these chores. It gave us a feeling of being in charge of our rooms. At least that's how I felt. We were learning responsibility, and how to care for ourselves and for our homes.

My senior year, we had a new superintendent. Bill Allen had been the superintendent for 40 years and he retired the year our school was integrated. The new superintendent had kids of his own, and things changed dramatically on campus. The integration went off without a hitch that I ever knew about until recently when I read the story posted here by Gene Brooks. We were simply pleased to have some new kids to get to know. We had a Student Council for the first time and I was voted president. We also had a yearbook for the first time and I was co-editor of The Wildcat. I also won the prestigious Crisco award for my cooking and sewing abilities.

Graduation was exciting and sad, as it is for young people all over the world. I planned to go to college, but I was terribly afraid that I would never learn my way around the campus. Although I had been a member of the National Honor Society, I didn't have much confidence in my ability to learn without all the support from school. I was in love as well, so when the chance came, I opted for love and married shortly after my 18th birthday.

I am fortunate enough to serve on the School Board for TSBVI. It gives me great pleasure to give something back to the school that taught me independence and self-confidence. Those old buildings sheltered me, and I believe that many of our teachers actually loved us. This place, those times helped me become who I am today.

That's the question! Who am I? I'm a career person, a wife, a mother, and a blind person. I'm me! And very glad about that.

English version of this article

Por el Dr. Phil Hatlen, Superintendente de Texas School for the Blind & Visually Impaired


Hace poco tuve el privilegio y el placer de dirigirme a un grupo de padres de niños ciegos y discapacitados visuales en un congreso en la ciudad de Galveston, Texas. Uno de los temas más populares entre los padres fue cómo se decide qué medio de enseñanza se va a usar. En otras palabras,¿cuáles de los niños deben ser lectores principalmente de braille y cuáles principalmente de la palabra impresa? Tuve la oportunidad de hablar de este tema un sábado por la tarde. Defasortunadamente, percibí que algunos de mis comentarios no fueron del todo claros y que algunos de los padres se fueron de la reunión con una impresión errónea o incompleta de mi opinión acerca de este asunto. Por lo tanto, escribo este artículo con la esperanza de que los padres que no me hayan comprendido tengan una mejor comprensión de mis convicciones acerca de la enseñanza con palabra impresa y/o braille.

La mayoría de los niños ciegos o visualmente discapacitados entran en cuatro categorías en relación con los medios de enseñanza. Algunos con toda seguridad podrán leer la palabra impresa, ya que la vista que poseen les permite leer en forma rápida y acertada, usando bien letra normal o letra grande o dispositivos ópticos. Para ellos la lectura no es difícil y conseguirán la rapidez de lectura y el grado de comprensión que suplen las necesidades tanto de la lectura educativa como de la lectura de placer.

Otros estudiantes leerán y escribirán en braille. Con frecuencia tales niños o son totalmente ciegos o bien poseen tan sólo la percepción de la luz. Al contrario de los mitos que han existido durante años en lo que concierne el braille, este medio de alfabetización no es ni torpe, ni lento, ni difícil de encontrar. El braille es un medio excelente para la lectura y la escritura y no es un sistema de segunda clase en relación con la palabra impresa.

Existe un tercer grupo de estudiantes a quienes les costará tanto la palabra impresa como el braille. Por lo general, tales estudiantes tienen otras dificultades en el aprendizaje aparte de la limitación visual. Estos estudiantes harán uso de otros medios de alfabetización. Uno de ellos es el aprendizaje auditivo. Otro método podría consistir en símbolos táctiles y cajas-calendario. Siempre existe un medio de algún tipo mediante el cual cada niño ciego o con discapacidad visual puede ser alfabetizado. Tal es el propósito de todo esfuerzo educativo.

Acerca del cuarto grupo existe cierta confusión y falta de comprensión. Este grupo consiste en los niños que tienen discapacidad visual y que tienen vista suficiente como para llevar a cabo algunas tareas y actividades de forma visual. Algunos padres y profesionales desean que tales niños aprendan braille. Otros defienden el uso completo de la vista existente, inclusive para la escritura y la lectura.

La confusión acerca de este cuarto grupo surge cuando no tomamos en cuenta que el braille y la palabra impresa son métodos equivalentes para la lectura y la escritura. Si pensamos que uno es superior al otro, corremos el riesgo de cometer graves errores en la educación de los niños. El Estado de Texas ha reconocido este problema y se han presentado proyectos de ley para colocar al braille y a la palabra impresa al mismo nivel, requiriendo que se complete una Evaluación de Medios de Aprendizaje con tales niños. Los resultados de tal evaluación pueden servir de guía excelente para las decisiones que deberán tomar los padres y maestros.

Lo que a veces complica la decisión basada en la evaluación de medios de aprendizaje es que los niños que van a aprender cómo leer la palabra impresa pueden recibir instrucción fácilmente en una clase común y corriente. Los chicos para los cuales se ha indicado el braille deberán contar con los servicios de un docente habilitado para la instrucción de niños con discapcidad visual. Los maestros de las clases comunes no están habilitados para enseñar la lectura y la escritura braille, como tampoco lo están los docentes adjuntos. En el caso de los niños que deben aprender braille, el docente habilitado deberá estar a disposición en la escuela todos los días. Los datos más actualizados indican que, para que los niños aprendan braille exitosamente, el docente para discapacitados visuales deberá poder enseñar lectura un mínimo de una hora por día.

A raíz de la falta de maestros para los niños con limitación visual en Texas así como en todo el país, a veces resulta difícil o bien imposible conseguir un docente habilitado para cada estudiante por el tiempo necesario de una hora por día. Si el docente habilitado tiene un exceso de estudiantes o bien un área geográfica excesiva por la cual es responsable, no estará disponible todo el tiempo que el estudiante lo necesita. Este es un problema gravísimo en el esfuerzo de proveer la capacitación de lectura más correcta y útil a este grupo de estudiantes. A veces, en algunos casos en los que no se presenta otra alternativa, el docente para discapacitados visuales puede consentir en que un niño aprenda a leer la palabra impresa aunque sería preferible que aprenda braille.

Lo que dije en Galveston fue lo siguiente: si su hijo tiene marcas de lápiz en la nariz cuando termina de escribir o si lee letras de una pulgada (2,54 cm) en un CCTV a razón de menos de 20 palabras por minuto, sospecho que está usando el medio de lectura equivocado. Si su hijo no puede leer una palabra entera a simple vista, es posible que no esté utilizando el medio de lectura que más le conviene. Existen varias pruebas para determinar el medio más adecuado para la lectura, sin embargo, el que más satisface tanto a los padres como a los docentes es el Learning Media Assessment (Evaluación de Medios de Aprendizaje), cuya administración a todo estudiante ciego y con discapacidad visual es requerida por el Código Educativo de Texas.

Padres: si no han visto los resultados de la Evaluación de Medios de Aprendizaje de sus hijos, les sugiero lo hagan. Si creen que tendría un mejor aprovechamiento utilizando otro medio de lectura, deben hablar con el docente especializado en discapacidades visuales de su hijo. Si el niño no está recibiendo instrucción de lectura y escritura con la frecuencia y duración que se aceptó en la reunión de la ARD, hable con el docente especializado de su hijo.

Los estudiantes ciegos y aquéllos con discapacidad visual tienen la buena fortuna de disponer de una variedad de medios para llegar a leer y escribir. Si los padres y maestros usan bien las opciones, cada niño en Texas podrá alcanzar una capacitación en la lectura y escritura que llegue al máximo, utilizando el mejor medio posible. Depende de los padres saber lo que necesitan sus hijos, trabajar conjuntamente con las escuelas para asegurar que estén de acuerdo sobre los servicios educativos ofrecidos y cooperar con el docente especializado en la discapacidad visual para que se asegure la mejor educación posible para los hijos.

(Originally published in Summer 2004 SEE/HEAR Newsletter)

By Virginia H. Owen, Retired Teacher of Students with Visual Impairments and Jacob's Grandmother, Houston, TX

Abstract: A grandparent relates her family's adventure of keeping up with her grandson's eyeglasses.

Key Words: blind, family, personal experience, eyeglasses, organizational skills/p>

Jacob, a 5th grader, had misplaced his glasses again. His parents were not thrilled at the prospect of having to buy another pair. He is a responsible student by nature, but he has a characteristic of being forgetful.

Being in the stage of preadolescence, it is very important to look like the other students. As he sees it, wearing glasses sets him apart from his classmates. Jacob knows that he has a serious visual limitation, but would rather keep the glasses off than to wear them for school work. In Middle School, it is very important to a student to appear "cool."

As instructed by his parents, he did a search of all the places at school where they might be. The glasses did not turn up. His mother went to the school and did a search herself—to his locker, to the Lost & Found, to the classrooms, to the Band Room. She did not find them. Things became tense at home.

Then Jacob had a light bulb moment. "I think I know where they are! They're in my trombone case!" He raced to the room where he liked to practice trombone, and there were the glasses, safely tucked away in the case. That saved the day, and Jacob was out of hot water.

Since I am his grandmother, and not the authority figure in his life, I can do a little teasing with him, while still trying to make a point. "Jacob, your glasses should be on your face, not in the trombone case," I told him. He grinned at me in a sheepish way, which made me know that he was listening to me. His parents and I hope so.

By Gloria Rodriguez-Gil, M.Ed., California Deaf-Blind Services Educational Specialist

Reprinted from reSources, Spring 2004, Volume 11, Number 2 with permission from California Deaf-Blind Services <http://www.cadbs.org/>

Abstract: This article is about how the sense of smell works and how this powerful sense may impact programming in the field of deafblindness.

Key Words: programming, deafblind, smell, senses

Several years ago I was shopping at Macy’s in New York when suddenly I smelled something familiar, and I immediately thought of my childhood doll Lucy. You see, I had not thought about Lucy for years, much less that Lucy had been my favorite doll back when I was growing up in Spain. Looking around, I realized that I was in the store’s toy section and that I was very close to a stand of dolls. Out of curiosity, I reached out for one of the dolls. On the doll’s box it said: “Made in Spain.”

This experience was incredible to me—that something so far back in my memory could be brought to the present by something so fleeting as one smell! Years later I recalled this incident when I learned that the part of the brain responsible for our sense of smell—the limbic system—is related to feelings and memory.

In order to make sense of what smell is and how we can think of using it in our work, let’s first explore how the sense of smell is put together.

How the sense of smell works

The sense of smell, just like the sense of taste, is a chemical sense. They are called chemical senses because they detect chemicals in the environment, with the difference being that smell works at dramatically larger distances than that of taste. The process of smelling goes more or less like this:

  1. Vaporized odor molecules (chemicals) floating in the air reach the nostrils and dissolve in the mucus (which is on the roof of each nostril).
  2. Underneath the mucus, in the olfactory epithelium, specialized receptor cells called olfactory receptor neurons detect the odor. These neurons are capable of detecting thousands of different odors.
  3. The olfactory receptor neurons transmit the information to the olfactory bulbs, which are located at the back of the nose.
  4. The olfactory bulbs has sensory receptors that are actually part of the brain which send messages directly to:
    • The most primitive brain centers where they influence emotions and memories (limbic system structures), and
    • “Higher” centers where they modify conscious thought (neo-cortex).
  5. These brain centers perceive odors and access memories to remind us about people, places, or events associated with these olfactory sensations.

 

SectionThroughNose

 

It is important to add that “Our sense of smell is 10,000 times more sensitive than any other of our senses and recognition of smell is immediate. Other senses like touch and taste must travel through the body via neurons and the spinal cord before reaching the brain whereas the olfactory response is immediate, extending directly to the brain. This is the only place where our central nervous system is directly exposed to the environment.” (von Have, Serene Aromatherapy)

The Sense of Smell and the Limbic System

The olfactory bulb is one of the structures of the limbic system and a very ancient part of the brain. As mentioned in the previous description of the olfactory process, the information captured by the sense of smell goes from the olfactory bulb to other structures of the limbic system.

The limbic system is a network of connected structures near the middle of the brain linked within the central nervous system. These structures “work together to affect a wide range of behaviors including emotions, motivation, and memory” (Athabasca University-Advance Biological Psychology Tutorials). This system deals with instinctive or automatic behaviors, and has little, if anything, to do with conscious thought or will.

The limbic system is also concerned with translating sensory data from the neo-cortex (the thinking brain) into motivational forces for behavior. The limbic system is centrally involved in the mediation between a person’s recognition of an event, their perception of it as stressful, and the resulting physiological reaction to it, mediated via the endocrine system: Stimuli are processed conceptually in the cortex, and passed to the limbic system where they are evaluated and a motivational response is formulated.

 

LocationOfMajorLimbic

 

What does this has to do with our field?

In the field of deaf-blindness, we have always known that many children who are deaf-blind have a very sensitive sense of smell to compensate for their limited use of vision and hearing. Consequently, we have always said that the sense of smell plays a key role in this population for identifying people, places, objects and activities.

The following statements are heard frequently in this field: avoid wearing strong fragrances because they can elicit seizures in some children; use the sense of smell to provide additional information (olfactory cues) to the child about what is about to happen to the child, e.g., bringing a bar of soap close to the child’s nose before taking a bath to tell him that soon he will be taking a bath; or to wear the same soft scent every time you work with a particular child so he can recognize who you are by this smell. All of this is very valuable information. The sense of smell is a strong sense for identification purposes and can have a strong impact in your brain because it is such an integral part of it (to the point that strong chemical smells can definitely elicit seizures).

But what about the role the sense of smell plays in relation with children’s moods, levels of arousal, emotions, memories and physical reactions? Now we know that they are connected.

Many times we are with a child and we can’t understand what is going on with him. He can’t tell us in a formal way. Maybe he is fussy or crying or smiling and we don’t know why. Why is he having these behaviors? Could it be about something he smells? We don’t know. We definitely know we should be paying more attention to this environmental factor to see if and how this is affecting the child.

I still have some questions in relation to the impact of the sense of smell in children who are deaf-blind and whether we can use this sense for our advantage, e.g., the use of consistent olfactory cues that might provide information a child could use to better understand what is happening, or eliciting a specific response from a child using a specific scent.

    • Are children who are deaf-blind more impacted by the sense of smell than children who have normal vision or hearing?
    • Are children who are deaf-blind with neo-cortex lesions more strongly impacted by the sense of smell because they might depend more on the information processed by the limbic system?
    • Can we help a child become more alert or less overexcited using a particular scent?
    • Can we calm a child using oils that have a calming or soothing scent?

Conclusions

Even though we don’t know exactly how children who are deaf-blind are impacted through their sense of smell, we know this sense is very strong and basic. When interacting with a child who is deaf-blind we should be aware of the environmental odors that might be affecting the child’s behavior. Ideally we should be pairing an odor with its source so the child can make the connection between what he is experiencing and its concrete referent.

As an educational specialist in the area of deaf-blindness, it would be interesting to work with a team that includes a neuroscientist and an aroma-therapist to find ways to use the sense of smell to the benefit of children who are deaf-blind.

The emotional connections and the memories attached to a smell seem to be very personal; it seems to be intrinsically enmeshed with the individual experience. I am certain that if another person had been walking with me that day several years ago at Macy’s, he or she would not have noticed the doll’s smell. And on perceiving the smell, he or she would not have thought of my doll Lucy or felt the same feelings I had with this experience. But strong memories can be encoded and be accessible through the natural workings of the sense of smell. It may be possible to create these links to help open another avenue for communication with children who are deaf-blind.

Related Links

Utilizing the Sense of Smell in Children and Youth with Deaf-Blindness PDF document http://www.sfsu.edu/%7Ecadbs/34UtilizingSmell.pdf

California Deaf-Blind Services Fact Sheet by David Brown, CDBS Education Specialist. Visit the following link to see the CDBS list of Fact Sheets with some topics available in Chinese, Laotian, Spanish, and Vietnamese: http://www.sfsu.edu/%7Ecadbs/factst.html; email or call 800-822-7884

The Limbic System http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2917081/

Smell and the Olfactory System) http://web.sfn.org/content/Publications/BrainBriefings/smell.html Society for Neuroscience - Brain Briefings, 1995.

Limbic System http://psych.athabascau.ca/html/Psych402/Biotutorials/18/intro.shtml Athabasca University-Advance Biological Psychology Tutorials

Olfaction http://www.cf.ac.uk/biosi/staff/jacob/teaching/sensory/olfact1.html Cardiff University-A Tutorial on the Sense of Smell

The Olfactory Response http://www.serene-aromatherapy.de/aromaolfactory.html von Have, Serene Aromatherapy

Our Chemical Senses: Olfaction http://faculty.washington.edu/chudler/chems.html Murray; Neuroscience for Kids Staff

(Originally published in Summer 2005 SEE/HEAR Newsletter)

By Kate Moss (Hurst), Education Specialist, Texas Deafblind Outreach

Abstract: This article is about the importance of investigating the correctable problem of earwax buildup in visually impaired and multiply impaired children so that functional use of their hearing is maximized.

Key Words: Programming, ear wax, ENT

There are a variety of problems that can result in hearing loss. Deformities in the outer part of the ear or in the middle part of the ear can result in a conductive type of hearing loss. Fluid in the middle ear or an obstruction in the ear canal may also cause this type of hearing loss, which is typically mild to moderate and can typically be easily corrected. A mild to moderate hearing loss during critical periods of language development can greatly impact the child’s speech and language development. When the child is also visually impaired, having a mild to moderate hearing loss that goes uncorrected is a big deal.

Any child with visual impairments, but especially those with multiple disabilities needs to make good use of their hearing to learn many of the things they need to know in life and to accommodate for their reduced visual capacity. Children who are blind or visually impaired have only one reliable distance sense and that is their hearing. The development of good auditory skills is critical to learning in general and especially important for literacy. Orientation and mobility skills depend in part on using auditory cues and landmarks to know where you are in space. Special care should be taken with visually impaired or blind students to make sure there are no problems with hearing.

One problem that is often not considered, especially in a child with multiple disabilities, is a problem with earwax build up. Everyone’s ears produce earwax or cerumen. This yellowish wax is produced by glands in the ear canal and helps to keep the ear canal clean and healthy. The movement of the mouth and jaw help the wax to move out of the canal naturally, carrying with it dust, dirt, and dead skin cells. Sometimes, however, the wax becomes very hard and gets packed into the canal. When this happens, the effect is like putting in earplugs. Water may also become trapped behind the wax and create more problems. Because sound cannot get into the ear efficiently the person may experience a mild to moderate hearing loss. This may also cause a feeling of fullness in the ears, dizziness or even tinnitus (a ringing in their ears).

Some people naturally generate a great deal of earwax and some people are inclined to have wax impaction problems. But many people create wax impaction problems by pushing the wax into the ear canal as they attempt to clean it out of their ears with cotton swabs, pins and the like. Attempting to clean out earwax in this way can also result in eardrum perforations, infections in the ear canal, and/or dry, itchy ears. It is good rule to simply clean out the ears using your finger and a washcloth.

Children should be checked periodically for earwax build up. This can be done with an otoscope by the child’s pediatrician or ENT and may often be done as part of a regular physical. If there is a wax build up, the doctor may prescribe or suggest an over-the-counter drop to help remove the wax. If necessary he may need to remove the wax with warm water and a syringe, scrap it out with a curette, or use a device to suction it out.

Take note of how your child seems to use hearing, especially if he/she is visually impaired. Do there seem to be problems in certain situations? If so, make sure the doctor checks for problems with earwax buildup or other concerns. It is probably a good idea to have regular and periodic hearing tests done, even on your child with multiple disabilities. Hearing is too important a sense to allow correctable problems with hearing to go uncorrected.

by Linda Hagood, Education Specialist, TSBVI Outreach Department
with help from Kate Moss (Hurst), Family Training Coordinator

Editor’s Note: In April of this year Region 20 Education Service Center and TSBVI Deaf-Blind Outreach Project sponsored a workshop presented by Dr. Jan van Dijk of the Netherlands. Dr. van Dijk has long been known for his work in developing educational programming for individuals with deaf-blindness. His work is the basis for much of the programming that occurs in this country for children with deaf-blindness. Linda Hagood, who has recently joined the staff of the Deaf-Blind Project in the Outreach department of TSBVI, has put together the following article as a result of the information she received during this workshop and her years of experience in working with children who have deaf-blindness. I think you will find this article helpful in thinking about communication for your child with deaf-blindness. If you have questions about the information presented you may contact Linda at (512) 454-8631, ext. 188. (Update 4/2015 Linda no longer works for TSBVI, but you may contact Kate Hurst with any questions you may have at )

In his recent presentation in San Antonio, Dr. Jan van Dijk stated that the goal in programming for individuals who are deaf-blind is "bringing the person to conversation." In my work as a communication specialist with children who are deaf-blind or visually impaired, I have become increasingly interested in this concept of "conversation" as it applies to children with limited language skills.

WHAT IS CONVERSATION FOR THE CHILD WITH LIMITED LANGUAGE SKILLS?

Conversation is often what we really want when we say that we’d like to improve "communication" or "language" skills of children with disabilities. Conversation can be defined as a dialogue between two partners consisting of multiple turns which are balanced between partners around a topic of shared interest. Most often we think of using words to fill our turns in a conversation, but we also can use actions, objects, facial expressions, and movements as our response during a conversation. Think of the times you shrug your shoulders, hand someone an object, or wave your arms in response to a comment or a question. Conversation differs from other types of communicative interactions because the focus is on interaction around a shared topic, rather than communicating concrete needs or wants, instructing, or following instructions.

Conversational interactions with children who have limited language skills should involve:

  • a short turn-taking format in which the adult and child alternately engage in actions with or without objects;
  • following the child’s lead in terms of interest or joint attention to objects;
  • a playful atmosphere, in which both adult and child are enjoying the time spent together;
  • modeling communication for the purpose of "commenting," "describing," or "requesting information."

While watching Dr. van Dijk evaluate a little boy named Tabor, I was struck by the undemanding, conversational nature of his interactions. We have often unintentionally taught our children to expect that all interactions consist of "adult prompts" followed by "child requests" or "child responses." I feel this occurs in part because we are not sure what "a conversation" looks like when the child has limited language. Let’s look at a "conversation" Dr. van Dijk had with Tabor.

Dr. van Dijk began by having Tabor and his mother sit beside him on the floor. Working through his mother initially, Dr. van Dijk instructed her to give Tabor a favorite object, "his" sock. After having some time to play with it, a second sock made of a different material was introduced by offering it to him or laying it on part of his body. Tabor would place "his" sock to his right, explore the second sock in the same way as the favored sock, then dropped it to search for "his" sock. This sequence of introducing other socks, letting Tabor examine the new sock, drop it and return to his sock was continued. Sometimes Tabor would be offered several socks at once and he would choose the one he wanted to explore. Dr. van Dijk gradually increased his involvement in this interaction until he was the person primarily interacting with Tabor. As Tabor caught on to this game, Dr. van Dijk began to alter the socks by tying a knot in the middle of it, tying two different socks together or placing an object inside it.

Before this interaction Dr. van Dijk had visited with Tabor and his parents and had learned several things about Tabor:

  1. Tabor had been diagnosed as having cerebral palsy and retinopathy of prematurity with retinal detachment in the left eye. He may have some light perception. Tabor had a moderate hearing loss resulting from complications of a shunt malfunction at the age of about four. He wears two ear-level hearing aids. He responds to voices and seems to discriminate between familiar and unfamiliar voices. However, he does not consistently search for sound sources or associate sounds with meaning.
  2. Tabor’s favorite toy was one of his socks. He would put the sock in his mouth, slip his hand down inside the sock, or stretch the sock with his hand while he held it between his teeth. He would also move through the house on his own and search through the clothes pile to find his sock.
  3. Tabor enjoyed playing movement games with his mother. In these games Tabor’s mom would co-actively clap his hands, or touch parts of his body, or rock him while singing songs.

Dr. van Dijk drew on this basic knowledge of Tabor to offer "topics" around which he and Tabor could have a conversation. He also used Tabor’s mom to "make an introduction" in order to enhance Tabor’s comfort level in interacting with him. All the elements of conversation were present in their interaction.

Turn-taking: Dr. van Dijk presented the sock, Tabor manipulated it. Dr. van Dijk presented another sock, etc.

Following the child’s lead: Dr. van Dijk focus on the object Tabor was most interested in and didn’t push him to explore the object in ways that were different from the ways he typically interacted with the object.

Playful atmosphere: The pace was slow and relaxed, no demands were made on Tabor to perform. His mother with whom he was most comfortable was involved in the interaction.

Commenting, describing, requesting information: Tabor’s actions said "I like this sock best. It is my sock. This sock is like my sock, I can do some of the same things with it, but it is also different. I like the way this one stretches. I don’t like the way this one feels." Dr. van Dijk’s action’s said: "I know you like that sock best, but I can put these two socks together for you. Your sock and the other sock will both hold this ball inside them. Some socks stretch more than others, you like to make them stretch, etc."

WHY IS CONVERSATION IMPORTANT FOR THE CHILD WITH LIMITED LANGUAGE?

I feel we should consider conversation as an essential component of communication and include it as an important aspect of programming for all of our students. As Dr. van Dijk noted, conversation "can occur at all levels" even with individuals who have little or no formal signed or spoken language.

Parents and teachers often tell me that they’d like to be able to have "conversations" with children who do not use or understand sign language or spoken words. I have unintentionally discounted this priority at times. I felt that it was more "functional" to focus first on teaching children ways to communicate their immediate, concrete needs and wants and to make choices between activities. I have made the mistake of suggesting that we save "conversation" for later, when the child has established a larger vocabulary or more formal communication system.

I found, however, that even after a child learned to ask for seconds at lunch, to choose between bowling and restaurant trips, or to follow teacher’s instructions he may continue to interact very infrequently with others. When I attempted to teach social interactive skills the focus was often isolated greetings or other social rituals. These did not necessarily make sense to the child, but they helped him to "fit in" to more normalized settings.

Focusing our communication teaching exclusively on "functional skills," such as requesting, choice-making and social rituals does not necessarily lead the child to engage in longer interactions or improve the quality of relationships with peers or adults. Children need to learn that sometimes we interact for the purpose of having fun together which is the "reward" for communicative behavior. These conversation interactions may naturally lead the child to more "functional" communication such as requesting, choosing or commenting.

FOUR PROBLEMS IN TEACHING CONVERSATIONAL SKILLS AND SOME SOLUTIONS

Some of the specific problems and solutions we’ve encountered at Texas School for the Blind and Visually Impaired in teaching conversation skills to people who are deaf-blind or blind multihandicapped are discussed in the remainder of this article. The emphasis will be on having conversations with children who have little or no formal language.

Problem 1: The child has limited exposure to conversational situations.

Idea: Set aside special times for having conversations.

Having a conversation with anyone takes a willingness to make time for that interaction to occur. We have conversations by phone, over a cup of coffee, around the dinner table, while riding in the car, etc. We take time to focus on the other individual(s) and devote ourselves to that interaction regardless of the environment in which the conversation occurs. Target some specific times of day or specific activities to have a conversation with your child. It might be just before bedtime, before you fix lunch, or before you begin a special activity together. Consciously targeting some special times to "chat" with your child makes these interactions more likely to happen.

Idea: Modify "functional" activities to focus on conversation skills development such as learning to select a topic, participate in turn-taking, and initiate, maintain, or end an interaction.

Conversations which occur during an ongoing activity frequently involve shared focus or playful interaction. Often these familiar activities help a child learn the art of conversation better than the situations which we set up to elicit requesting or choice-making.

An example of ways to incorporate both functional skills and conversation into a typical bath time are shown below. These are appropriate for a child who does not use formal signed or spoken language.

"Functional" skills that are worked on:

  • scrubbing body parts when touched
  • removing clothing
  • choosing favorite bath toys

"Conversational" skills that are worked on:

  • maintaining interaction by filling five (5) consecutive turns
  • initiating familiar play activity
  • choosing and/or changing the focus of the interaction

"Conversation" Activities (determined by the interest of the child):

  • Tickle games: "This Little Piggy" or "Gotcha" At first, the child may fill his turn by smiling during pauses, later by extending foot, or by ducking when adult says "I gotcha;"
  • Blowing bubbles through a straw on various body parts in predictable sequence.
  • Scrubbing each others' arms (take turns with adult or sibling);
  • Using squirt guns to squirt water in the same place on the child’s body using consistent vocal and touch cue to build anticipation;
  • Playing with water balloons. The adult fills balloons, some with air and some with water then ties them. Take turns playing with them by squashing them comparing full and empty or air-filled and water-filled balloons .

Idea: Use routines or familiar repetitive activities to develop patterns of expectancy and anticipation which can be built upon to provide the child a way to talk about the present, past, and future.

Children without formal language may have trouble understanding conversations about something which has happened in the past or will happen in the future. In order to develop this time sense it is important to begin with conversations which are closely tied in time to the actual experience. As the child learns to converse about familiar, repeating events in his "present" you can provide ways to help him begin to converse about activities in the past or future using calendars, memory boxes, and reference books. Dr. van Dijk discussed the importance of "announcing the event, discussing it." He stated that it is "essential for human beings" to have a past, a present and a future.

Dr. van Dijk stressed the importance of developing patterns of expectancy and anticipation through the use of routines or familiar repeated activities such as the "sock game." When an activity is announced or begun, it is important to watch the child for signs of anticipation and recognition. Some signals of anticipation may include:

  • a change in affect (become excited or nervous);
  • appropriate use of objects (e.g. begins to try to push the shopping cart, brings toothbrush to mouth);
  • moving toward the area where activity usually occurs (going to door when mother removes keys from purse).

The moment in which a child anticipates or expects something to happen is often the time they will communicate and our conversations will be most effective and meaningful. At the point of anticipation, pause for a brief conversation with the child before continuing with the routine.

For example, a child may initially anticipate a trip to the grocery store when her hands are placed on the grocery cart outside of the door to the grocery cart. For this child, the "conversation" could involve exploring the cart together; choosing whether to sit in the front or the back; buckling the belt and unbuckling it; showing the child a wrapper for candy they will buy later in the store. Another child may anticipate this trip to the store earlier in the routine. When his mother makes a list in the kitchen or collects bottles to be returned to the store the child may anticipate where they are going. For this child, the "conversation" about going to the store could involve helping to make a shopping list by drawing or placing pictures or labels on a list. He might help collect the return bottles or be given money for the merry-go-round or gum machine outside the store.

A "discussion box" provides a way to announce and discuss an event that is about to take place. The discussion box (usually a plastic basket or other container) contains a number of objects that a child may use during an activity. A breakfast discussion box might include a toaster, plate, cup, napkin and knife. When the child sits at the breakfast table, she can remove the items one at a time exploring the objects on her own. (She may show some anticipation of the sequence or function of the objects by the way she explores them.) Dad or mom can help her "pantomime" the use of the objects as they are removed, e.g. pushing button down on a toaster or drinking from a cup. In this way, the child can be exposed to a "conversation" which is only slightly removed from the activity, at a time in which she is anticipating a familiar routine.

When a child demonstrates anticipation of a variety of activities with cues presented just before beginning activities, he or she is ready to use a concrete calendar system. Calendar systems provide a concrete way of scheduling events that are important for a child. The events can be represented in a number of ways using objects, pictures, tactile symbols, or written or Brailled words depending on the child's preferred communication form and abilities. These symbols can be placed in a cubby box or on a more traditional wall calendar. Time frames reflected on the calendar may range from two activities occurring within a short period of time to activities or events encompassing an entire month or a year.

Having a conversation about the event which will occur can take place naturally during calendar time. However, even though it is important to talk about an activity after it is completed, I’ve found that children and adults are most interested in talking about novel aspects of past events. For example, instead of drinking the coke at the restaurant, it spilled. We filled balloons with water today instead of popping them. The conversation might incorporate pantomime or drawing pictures of these new and interesting aspects of the activity.

Problem 2: Children do not understand roles and rituals involved in conversation which allow them to: maintain, initiate, and end interactions, or change the topic.

The child with sensory impairments may not receive the visual or spoken cues which typically occur in conversations. Learning to take turns, initiating, maintaining, and stopping interactions or changing topics of conversation are skills that often need to be taught. They may need explicit instruction and concrete cues to learn the expected behaviors in both nonverbal and verbal conversations.

Maintaining Interactions Through Turn-Taking

Idea: Use social games to teach a child how to sustain an interaction.

Ritualized social games, such as "Peek-a-Boo, " "This Little Piggy," and "Pat-a-Cake" play an important role in teaching all children, even those without disabilities, how to sustain an interaction for multiple turns. These games have features which make them good for teaching children to take turns in conversations:

  1. Simple repetitive structure
  2. Playful atmosphere
  3. Clearly marked cues for child response
  4. Multiple opportunities for child response
  5. Reversible roles

When adapting these games for your child, think about how deafness or blindness might impact these features. For instance, the child without vision will need tactile and auditory "surprises," rather than visual ones to understand "Peek-a-Boo." The typical visual cues (hiding the face) are not available.

The social game features should also be considered when inventing new games for your child. Songs which involve "whole body" contact with the parent and incorporate movement provide a good structure for learning to keep an interaction going by signaling for continuation of movement during pauses, maintaining joint attention, laughing or other affective responses. Dr. van Dijk suggested movement activities with a predictable, consistent pattern provide an important basis for learning conversation.

Dr. van Dijk developed a social game with Tabor around sound play, which had been previously identified as a "self-stimulating behavior." He began by singing a brief melody in Tabor's ear, then paused to allow his mother to sing another melody. They continued to take turns singing the song until Tabor began to understand the structure of the interaction, then modified the tune, the loudness, and the rates of their singing to help maintain his interest. Tabor showed them that he understood and enjoyed the game by leaning toward the next "singer" during pauses in the interaction, and by smiling or laughing when the songs changed. In these subtle ways, he filled his turn and was able to maintain the interaction for about 15 minutes.

Idea: Multiple step functional activities with clearly defined, predictable roles can also provide children with a way to maintain an interaction.

Most activities can be broken down to multiple steps which can provide an opportunity for maintaining turns. For example, in washing the dishes the sequence might occur as follows:

  • Adult: turns on hot water
  • Child: turns on cold water
  • Adult: hands child dish soap
  • Child: squeezes soap into the sink
  • Adult: puts the dishes into sink
  • Child: rubs the dishes with a rag and hands them to the adult one at a time
  • Adult: helps the child pull the plug out

While the child may need some help initially to perform his parts of this activity, it is important that the turn-taking format is presented, so that the child learns that this activity is structured with consistent roles. A second adult may be needed to help the child fill his turn so as not to confuse this turn-taking structure. However, it is important not to structure all of the child’s activities this way or you will run the risk making the child too reliant on the adult’s prompts.

Dr. van Dijk also stressed the importance of consistency in the way that activities are structured for a child who is deaf-blind. Greatly altering the structure of the activity (e.g. asking child to "wash dishes by himself" with support provided by an adult as needed) may cause the child to conceive of the activity in a very different way, and may cause confusion about what we want from him.

Idea: Your main priority should be a focus on keeping the interaction going for more turns.

Children who begin to develop some language skills will inevitably be asked questions by adults. It is important to avoid overloading the child with questions, since these are usually not the best way to keep an interaction going. Even when children are successful in answering questions, we have found that questions often lead to "dead end " interactions consisting of a single adult initiation and a single child response. More helpful ways of keeping a conversation going include:

  • following the child’s lead by acting on an object mentioned by the child or providing language to describe what the child is doing or attending to at the time.
  • expanding what the child says (imitating his action and adding an action of your own)
  • responding to the child in some fashion even if you do not understand the intent of his communication.

Initiating Interactions

Children with deaf-blindness are often passive in their interactions, always waiting for an adult to initiate the interaction. Dr. van Dijk emphasized the difference between the child who will "wait and see," and the child who is in a more ready state of "anticipation," in which he is ready to learn. Some helpful strategies for stimulating the child to initiate might include:

Idea: Interpret non-communicative behaviors as "conversation starters".

When the child moves to an area and begins to search for a familiar object or toy, the adult can respond as if this is an attempt to interact and converse. For example, a child always goes to sit in his favorite rocking chair when he gets home from school. The adult always follows him, helps to remove his shoes and socks, and then rocks him gently. Periodically the adult pauses to allow him opportunities to continue the "conversation" by signaling for continuation.

The child learns that his actions can impact other people, and that people in his environment respond to his intentional behavior. He can start conversations as well as responding to others’ input. It is important to be sensitive to the level of intrusiveness which is acceptable to the child during this type of interaction. For example, if the child clearly does not want to share an interaction (i.e., turns away from the adult or clutches his chair more tightly when approached by the adult) this should be interpreted as "no" to the adults question "Do you want to rock with me?" It is important to respect this communication and his need for time alone.

Idea: Make slight changes in familiar routines.

When the child shows through anticipatory behavior that he knows what is to happen next, you may be able to stimulate him to initiate a "conversation" by throwing him a curve. Adding novelty to a routine, may cause him to try to initiate the predicted action or ask for an object needed to begin the activity. For example, instead of providing the wooden spoon to stir the juice at snack time, substitute a plastic spoon. Wait for the child to respond; he may search for the "correct" spoon or ask for the adult to help. This lets you know he is aware of what usually happens and allows you to have a conversation about the different utensils which can stir, the similarities and differences between the spoons, etc.

Idea: Help the child locate a partner for conversation.

It is important for the child with vision and hearing problems to know where to locate a familiar person if they want to initiate or maintain an interaction. For example, parents should try to sit in the same seat, close to the child at dinner. While playing at the sandbox, let him know where you are positioned. It is helpful to "touch base" with your child frequently when he is playing outside or in his room, by using physical contact and voice and by positioning yourself within his visual field. These momentary interactions may provide the child with important reminders that you are available if he would like to start a conversation.

Ending Interactions and Shifting Topics

We all employ "conversation ending" tactics ("I need to talk to someone over there.") and topic shifts ("That reminds me something I’ve been wanting to ask you.") to control our interactions with another person. When the child who is deaf-blind gives you a cue that he is not enjoying the interaction it is critical that you either change the topic or end the interaction.

Idea: Observe the child’s attention and interest level to determine when to shift topics or end the interaction.

It is important to respond to changes in attention and interest level as a child’s way to end a "conversation." Dr. van Dijk noticed after a period of time that Tabor was taking all of the socks and putting them to his right. Dr. van Dijk seemed to interpret this as meaning, "Give me something new." He moved to a new topic, the "singing game", to keep Tabor engaged. A child may fuss, turn his head, disengage, or demonstrate some other behavior to indicate his need to change the topic or end the conversation. Being a good observer of the child’s responses is key to having a conversation.

 Idea: Teach more conventional ways to end an interaction.

Some children may not have good strategies for ending an interaction. It may be helpful to teach the child to reject or end an activity by pushing objects away gently or by using a calendar "finished" basket. Both of these strategies can be taught in non-stressful situations. For example, the child pushes away the non-preferred item in choice-making activities; or he pushes his plate away gently as the final step in a dinner activity. One child we know threw away balloon pieces as a way to end the balloon activity. He was able to generalize this final step in the routine as a way to tell us, "I don’t want to play this game now." It was very important for us to respect his request to end an activity. We generally gave him some time alone before attempting another interaction.

Problem 3: Children may not have enough to talk about (limited topics).

Topics are the "subjects" of conversations; a conversation with a friend might include topics such as marriage, work, children. Our selection of topics reflects what we know about the world and where our interests lie. The child with sensory impairments needs us to bring the world to him, to find the things that are valuable and interesting. He will also need help to be able to share them with us. Help him expand topics for conversation by considering these guide lines:

Idea: Build topics for conversation by developing and expanding activities that the child engages in every day.

First look at the things that the child does already, such as brushing teeth, bathing, eating. Look for parts of those activities which could be turned into "conversations." For example, a "conversation box or bag" with a toothbrush, cup, and comb previews the activity with the child just before brushing teeth in the morning. Items can be added to the bag to expand on the topic, including hand lotion, lip balm, hair clips. During eating, a "conversation" can be set up by taking turns tasting juice or food items as they are added to the child’s plate. Try to develop a list of activities in which these brief conversational encounters can be incorporated without changing the child’s schedule. Think of these as "topics" for conversation .

Idea: Expand the variety of topics by looking at what is interesting to the child about favorite objects or activities.

Children often have favorite objects which they hold and manipulate. Instead of always considering these as "self-stimulating" objects which should be discouraged or worked around, it is sometimes helpful to look at the features of the object which make it interesting for the child and to try to build on these.

For example, one child we knew loved playing with a vibrator. He could remember the location of a vibrator wherever it was placed in the building. He liked to place the vibrator on his ear or neck, and tended to withdraw from interactions while engaged in play with his vibrator. We decided to introduce other objects that vibrated, to try to build interactive turn-taking activities around them. We were careful to introduce the new objects in interactive, not solitary, situations. We did this because we knew that if he began to play alone with them, he may not be as willing to share them with conversational partners.

Conversational topics which were developed around his preference included:

  • Foot massage with a foot bath, in which he and a partner took turns activating the foot bath with a switch, drying each others' feet, and rubbing each others' feet.
  • Making juice with an electric juicer. He and a partner took turns pushing the orange halves down on the top of the juice machine. They cued each other by passing the bowl of oranges when their orange was squeezed.
  • Play with a vibrating pillow and a switch with a timer. One partner holding the pillow while the other one turned it on with a switch.

The original vibrator never became a "conversational topic" because he used it only for solitary play and would not willingly share it with others. However, by looking at this child’s interest in vibration, we were able to build four interactive topics for "conversation." It was important to distinguish between interactive and solitary activities for him, because any of these activities could have easily become solitary activities rather than conversational activities.

Idea: Provide a format for displaying or making vocabulary concrete and accessible.

For children who understand object symbols, display objects on boards or hang them on the child’s door in shoe bags or boxes so that the child can access them. Children who understand pictures or tactile symbols can use storage books or boards which the children and adults can use to develop conversation. Organize these displays by categories (people, places, objects, actions), or by activity.

Idea: Associate specific people, places, actions, times, and objects with familiar routines to help him enrich his concept of a specific topic and to develop building blocks for more formal language usage.

Language grows out of children’s non-verbal knowledge of objects, people, places, actions, times, and feelings. All children have to develop organizational systems to take the chaos of random "experiences" and find meaning in it. Without some way to label an experience, it is impossible to share that experience with someone else. We organize these experiences in different ways making categories of a sort: things, actions, people, etc. which helps us retain and retrieve these experiences. These categories help us to interpret new experiences and expand our knowledge. For example, we associate the actions of pushing a cart, walking down aisles filled with food supplies, and selecting food with a grocery store. We do not associate petting a dog or riding a motorcycle with this place. The actions associated with the grocery store experience define the concept for us even though there are many types of grocery stores that we experience.

It is important to highlight specific aspects of an activity even if we aren’t using words or signs to describe them yet. This will help the child to develop these "categories" where his experiences can be stored. Later, when the language is introduced, the child will have the conceptual underpinnings needed to make sense of the sign or spoken word. The example in Chart 1 shows concepts or early vocabulary that could be highlighted in two different conversational topics that were the focus of the interaction between Tabor and Dr. van Dijk.

Problem 4: The child has limited partners for conversation.

Children with deaf-blindness often communicate to only a limited number of partners. Often, we see that the child bonds and develops trusting relationships slowly. Their conversations are often very context-dependent--only a few people know how to keep an interaction going with them, and only a few people can understand the child's signals or "home-made signs."

Idea: Expose the child to a greater variety of people by providing guided interactions with peers and others unfamiliar with the child’s specific conversational style.

Because of their unique communication systems, children with deaf-blindness are most often involved in one-to-one interactions with parents or other adults, and may not have many opportunities to engage in interactions with peers. It is important to provide guided interactions with others in order to support them in becoming friends with the person who is deaf-blind.

It may be helpful to observe the natural interactions which occur with peers, brothers and sisters, and use these interactions as conversational forms, instead of trying to train peers to use forms selected by a teacher. Children may come up with their own personal ways of communicating and interacting if we do not interfere with the process. However, we should be available to guide the interactions when needed and to demonstrate nonverbal ways to communicate.

When communicating within activities, peers and co-workers may need help learning to use touch cues, to play physical non-verbal games ("high-5," "cats in the cradle", etc.), and to respond to the child's signals. When communicating about non-present events, we have sometimes found that new people feel most comfortable in communicating if they have a communication book with concrete pictures or symbols to represent important activities (bathroom, car, eating).

CONCLUSION

Although Dr. van Dijk described conversation as "the goal" for the deaf-blind child, I think he would also agree that the types of non-verbal conversations we’ve been describing are also the foundation for learning language and a variety of other skills. As children spend more time interacting with other people, they naturally have more opportunities to learn from them. If conversation and interaction are priorities, the child will have many opportunities to learn new words, signs, symbols and / or functional living skills.

I hope that I have given you some ideas about how to improve conversations with children who are deaf-blind. To summarize:

  1. set up opportunities and situations in which conversations can occur;
  2. teach conversational structure (starting conversations, keeping them going, ending or shifting topics);
  3. expand topics by making the world more interesting and accessible;
  4. provide more varied partners; and
  5. follow the child’s lead and interests in order to engage him in conversation.

Better conversational skills can lead to better overall communication skills which are critical to leading a quality life for individuals with deaf-blindness.

READINGS AND RESOURCES:

MacDonald, J. and Gillette. Y (1986) Communicating with persons with severe handicaps: roles of parents and professionals, JASH, Vol. 11, 255-265.

MacDonald, J. and Gillette. Y (1985) Taking turns: teaching communication to your child, Exceptional Parent, September, 49-51.

Manolson, A. (1984) It Takes Two to Talk: A Hanen Early Language Guide Book. Toronto, Canada: Hanen Early Language Resource Center.

Stillman, R. and Battle, C. (1984) Developing prelanguage communication in the severely handicapped: an interpretation of the van Dijk method, Seminars in Speech and Language, Vol. 5, No. 3, 159-169.

van Dijk, J. (1985) An educational curriculum for deaf-blind multi-handicapped persons, Sensory Impairments in Mentally Handicapped People, D. Ellis (ed.) San Diego: College Hill Press.

van Dijk, J. (1965) The first steps of the deaf-blind child towards language, Proceeding of the Conference on the Deaf-Blind, Refsnes, Denmark. Boston: Perkins School for the Blind.

Watkins, Susan, Ed.D, Editor (1989) Communication program, INSITE Model: A Model of Home Intervention for Infant, Toddler, and Preschool Aged Multihandicapped Sensory Impaired Children (117-298). Hyrum, Utah: HOPE, Inc. Downs Printing.

Writer, J. (1987) A movement-based activity approach to the education of students who are sensory impaired/multihandicapped, Innovative Program Design for Individuals with Dual Sensory Impairments, L. Goetz, D. Guess, K. Stremel-Campbell (eds.) (191-224) Baltimore: Paul Brookes.


Chart 1 - Topic expansion for a child with limited language based on two sample conversational interactions between Tabor and Dr. van Dijk as discussed in "Conversations without Language: Building Quality Interactions with Children Who are Deaf-Blind" by Linda Hagood, TSBVI Outreach.

TOPIC & ACTIVITY: SOCKS

Tabor’s mother and Dr. van Dijk began by offering Tabor his favorite sock, letting him explore it in familiar ways, then offering other types of socks. As the game progressed the socks might be presented together so he could choose, with an object placed inside, or tied together. Tabor anticipated what would come next in the activity and would place "his" sock on the floor to his right so he could explore the sock that was being offered next. When he tired of the exploration of the new sock he would drop it and search for "his" sock.

VOCABULARY CATEGORY

  • Objects - (foundation for nouns)
  • Actions - (foundation for verbs)
  • Places - (foundation for names of locations, prepositions, adverbs)
  • People - (foundation for the names of specific people)

NON-VERBAL WAYS TO HIGHLIGHT SPECIFIC CONCEPTS AND VOCABULARY

During the interaction Dr. van Dijk exposed Tabor to various types of socks (footlets, baby socks, sweat socks, nylon socks, slipper-socks). This type of experience can help Tabor understand that the category of "socks" includes a variety of different objects which share common features--they are stretchy and have an opening in the top.

Tabor currently likes to find socks, stretch socks,hold them in hands, and hold them in his mouth. The number of actions he does with socks can be expanded by gradually showing him to put on socks, put things into socks, tie and untie socks. Performing these new actions with socks will help him again to develop a richer concept of "sock" and will provide a foundation for learning verbs.

Tabor first discovered that he could find socks in a specific place, the laundry pile. Expand his understanding of sock locations by helping him to find socks in the dryer, in different dresser drawers, in his bedroom, etc. He also showed he has specific places where he puts socks based on whether he wants to play with it (in front of him), or he wants to store it (discards it by placing it in a pile beside him).

Although Tabor’s sock game is currently a solitary activity if he is not resistant to "letting people in", it might be nice to build some associations between specific sock games and specific people. Mama always plays put-the-sock-on-the -hand games, Daddy always plays hides-the-block-in-the-sock.

TOPIC & ACTIVITY: SONGS

Tabor’s mother and Dr. van Dijk took turns singing in Tabor's ears. Dr. van Dijk was positioned to his left and Tabor's mother was positioned to his right. Tabor showed he anticipated the next turns by smiling and orienting toward the next person during pauses. He also showed a preference for his mother's voice by generally shifting his body orientation toward her during the activity.

VOCABULARY CATEGORY

  • Objects - (foundation for nouns)
  • Quality - (foundation for adjectives)
  • People - (foundation for the names of specific people)
  • Time - (foundation for time concepts, adverbs)

NON-VERBAL WAYS TO HIGHLIGHT SPECIFIC CONCEPTS AND VOCABULARY

Dr. van Dijk expanded the sound play by blowing up balloons and singing into them to change the sound of his voice. Other objects could also be incorporated into the sound play activity, such as kazoo, tubes, microphone.

Dr. van Dijk and Tabor's mother changed the rate, loudness, pitch, and tune of the singing presented to Tabor. This seemed to maintain interest for both Tabor and the adults involved. It also provides a basis for Tabor's later development of preferences and vocabulary related to sound quality.

Tabor demonstrated an acceptance of a new partner (Dr. van Dijk) and a preference for his mother's voice. This might be an activity which Tabor could later learn to share with peers or other adults and make associations. Ed sings the Popeye song, Mommy sings the Barbra Ann song.

The activity could be presented at a consistent time each day, e.g. always right before bed or just after breakfast. Later, when trying to teach concept words like morning or night, he may be able to associate this concrete activity with those more abstract time concepts as represented in a concrete calendar system.

By Craig Axelrod, Teacher Trainer, TSBVI, Texas Deafblind Outreach

Abstract: Educators can have more positive, responsive and reciprocal interactions with their students who are deafblind by learning how to modify their own interactive behaviors and adapt the interactive context. High quality interactions contribute to improved educational outcomes for students with deafblindness.

Key Words: programming, deafblindness, Jan van Dijk, research-based, interaction, behavior, communication, educator-oriented intervention, instructional strategies, video analysis

Part One of this article, which first appeared in the Fall 2004 edition of SEE/HEAR, summarizes research-based conclusions about the importance of high quality interactions with students who are deafblind. From that research, and other resources, Kim Conlin, Tish Smith (communication specialists at TSBVI) and I designed a two-day training for TSBVI educational staff. In Part Two, this educator-oriented training process is described. When it was originally published, in the Winter 2005 edition of SEE/HEAR, four trainings had been facilitated, with four participants in each training. At the time of this revision (February, 2008), seven trainings have been facilitated at TSBVI, and regional trainings in two other Texas cities have also been held.

 

The Interaction Training Process at TSBVI

When determining who will be invited to participate in interaction training, we consider interested staff who are teaching students with deafblindness and understand the basics of good programming, such as structuring a routine and using a calendar system. They have interactive challenges with their students that we want to address. Staff may also be teaching newer students we want to better understand. The students represent a variety of abilities and needs.

 

Introduction to the training model:

The educator-oriented learning goals of interaction training are to:

  • Understand the role of high quality interactions in early development
  • Understand the challenges to high quality interactions with children who are deafblind
  • Identify student-specific factors that impact interactions
  • Recognize the components of interaction
  • Analyze the interactions between adults and students who are deafblind
  • Identify and implement intervention strategies that improve the quality of those interactions

 

Several weeks before interaction training, participants are asked to notice and think about the interactions they have with their students, then bring those observations and questions to the first day of training. As the training progresses, and more is understood about the unique characteristics of deafblind children, interactions with deafblind children in general, and with their students in particular, concerns, goals and possible intervention strategies for improving the quality of those interactions become more refined and specific.

On the first morning of training, after introductions and clarification of the learning goals, information is presented about interaction problems and possibilities of students who are deafblind (as described in Part One). To help exemplify these ideas, participants view and discuss the videotaped interactions between a student and three adults. The three interactions are clearly very different, and the student's abilities also seem to differ. An Interaction Data form is introduced as a tool to help graphically represent those differences.

 

Interaction data

The Interaction Data form codes these components of an interaction:

    • Description of Turns: Each interactive turn is briefly described. This enables the people coding to quickly match information seen on the video to its corresponding location on the Interaction Data form.
    • Interactive Turns: Each turn is assigned a letter, A-F, based on the six observational categories identified by Rick van Dijk and his colleagues.
      1. Student Initiates: the student's action is directed at the adult in order to influence the adult's behavior
      2. Student Responds: the student responds to the adult
      3. Student Acts Independently or No Response: the student acts without an intent to influence the adult's behavior, or does not respond to the adult
      4. Adult Initiates: the adult's action is directed at the student in order to influence the student's behavior
      5. Adult Responds: the adult responds to the student
      6. Adult Acts Independently or No Response: the adult acts without an intent to influence the student's behavior, or does not respond to the student
    • Connecting Consecutive Turns: Arrows are drawn between "related" consecutive turns, reflecting the duration of an interaction on a particular topic.
    • Interactive Behaviors: Each turn of the student or adult is then assigned one or more numbers, 1-8, corresponding to behaviors that describe the turn's interactive qualities. These interactive behaviors are adapted from the eight core categories of behavior as defined by Marleen Janssen and her colleagues.
      1. Initiatives: starting an interaction or bringing up something new as part of an answer
      2. Confirmation: clear acknowledgement that a partner's action has been noticed and recognized
      3. Answers: a positive or negative response to the partner
      4. Turn Taking: becoming the actor
      5. Turn Giving: allowing or encouraging the partner to become the actor
      6. Attention: focusing on the partner, the content of the interaction, or the individuals and/or objects within the interactive context
      7. Regulation of Intensity of the Interaction: for the student – appropriate or inappropriate interaction; for the educator – waiting while the student regulates intensity, or regulating behaviors that influence the student's intensity (such as proximity to the student [e.g., nearer, further away], pacing [e.g., faster, slower], animation [e.g., facial expression, size of movement], voice [e.g., inflection, volume] and amount or type of touch [e.g., frequency, degree of forcefulness])
      8. Affective Involvement: sharing positive emotions with the partner

    (If during an interactive turn, the student or adult "acts independently or gives "no response," C or F, no interactive behaviors are credited.)

     

    Interaction Data Form

 


Interaction1


B is 19 years old and has microcephaly secondary to an encephalocele (a congenital protrusion of the brain through a cranial fissure). He's legally blind with a cortical visual impairment, is suspected of having a hearing loss, and has multiple disabilities that include mental retardation and cerebral palsy.

Coded video fragments from B's three interactions are analyzed, to identify and compare components of the interactions that reflect their different characteristics and result in his varying degrees of interactive competence. This activity also familiarizes participants with the Interaction Data form. Later in the training, they will use the form to code and analyze video fragments of their own interactions.


interaction2


 

B and the teacher - stretching on the therapy ball: The teacher talks to B twice in this fragment, but acts independently during the other turns. He prepares to move B, positions him on the therapy ball and stretches parts of his body with no interactive behaviors, no expectation for B to take a turn and no connected turns.


 interaction3


B and the teacher aide - eating lunch: The aide is attentive to B, and waits until he's ready before offering a bite of food. B responds once by accepting the spoon (answering "Yes") and once by rejecting it (answering "No"). When he refuses the food, she confirms his response by putting down the spoon and getting the milk cup. Turns in both of these sequences are connected. She acts independently by wiping his mouth. There is no observed enjoyment (affective involvement) of the interaction.


 

 

By Christi Ambramsky, Parent, Rockwall, TX, and Harry L. Fullwood, Ph.D., Coordinator of Special Education Programs, Texas A&M University - Commerce

Abstract: The authors share a selection of things to keep in mind regarding the life and family of a child with special needs.

Keywords: personal experiences, family, parenting, special needs, professional service providers.

Editor’s Note: Christi came to the ESC 10 Baby’s Luncheon with an amazing variety of “active learning” items that she had created for her son, Eli. Eli is two years old now and his main diagnosis is agenesis of the corpus callosum. He also has cortical vision impairment, unilateral moderate hearing impairment, delayed development, and a number of other medical issues. Christi has developed a sense of what works with children with sensory loss and is eager to share it with both parents and teachers. She can be contacted by email at <>.

 

Recently, I returned to college after working for many years as a computer programmer, my chosen field as a young college student. Although still enamored with computers and technology, I recognize now that people are often guided by lifetime events and circumstances that change career direction. After our fourth son was born with special needs, computer programming did not fulfill me as it had at one time. After dealing with a great deal of fear and reluctance, I quit my job in order to go back to school. In a few semesters, I will graduate with a degree in special education, enabling me to help children like my own and allowing me to teach in a field desperate for qualified educators. After some persuasion, I recently volunteered to speak to one of the special education classes in which I was enrolled. The course, “Introduction to Special Education," is designed as comprehensive review of pertinent information regarding all aspects of special need learners including terminology, classification, characteristics, litigation, inclusion and parenting. When we began the chapter regarding families, I volunteered to speak to my class about parenting a special child. Although I often talked to many individuals casually about my son’s unique needs, I had never formally addressed a group about the subject. I found the talk to be very therapeutic and suspect that my classmates gained more from my personal experiences than the textbook chapter could deliver. As a result of the preparation and introspection required for this public dialog, it occurred to me that there are a number of things I wish every person that we interact with knew. So, to doctors, nurses, therapists, friends, educators, acquaintances and family: I offer this list of “Things to Know!” Without the personal experience of parenting an exceptional child, these items were hard lessons, but soon learned along life’s journey with my beautiful son.

 

1. There is no reason for you to be sorry. It seems to me that the first number reaction people offer when they find out that we have a child with special needs is “I am sorry!" People are being kind when relaying sorrow that something so difficult has happened to us but, in fact, it is not necessary. We are not sorry! Our child is a gift and we embrace him – all of him and all of the things that come with the territory. His disabilities, his 12 doctors, his 5 therapists, all of the love and joy, all of the wonderful lessons that he had taught and the empathy for differences that he will teach our other children. There is no reason for you to be sorry, we aren’t.

 

2. We might need a little extra support. Before we had our son, I could have never imagined the amount of time one child can occupy. We currently have at least four appointments a week, not including the large list of doctors that monitor him or the therapies that he needs each day. This practice is common for families with a special needs child and occupies a majority of my time. My friends may find I don’t call as much as I used to, or, when I do, I may sound irritated and frazzled. Please understand that I still love you and need you in my life. In fact, I may need you more than I used to but am simply overwhelmingly busy and tired. Please, keep calling and keep offering your love and support.

 

3. I really do care. This is kind of an extension of the point above, but something that I would like to make very clear. There are times when I am so tired that I have a hard time concentrating on what others say. Additionally, I may be so worried about something going on that I cannot concentrate on others in my life. Understand that I really do care about what you are saying. Doctors and therapists, please help me by writing down the important things that I must know and feel free to call and remind me if possible. Teachers please forgive me and help me stay on top of obligations regarding my other children. I try so hard to keep everything organized, but lots of things slip by. If you think that I am not listening to you, please try to understand it is not because I don’t care.

 

4. My other children might need some extra support and attention. It is so important to realize that the whole family is affected by major change. I try to help my kids with some of the obvious feelings that they have, but I know that there are a lot of things they would never tell me. Feel free to offer them support. Invite them over to do homework with your child – this activity would offer them support, attention, and be of great help to me.

 

Especially for teachers and caregivers: 

5. Above all else, love my child. I appreciate everything that you do, I truly do. I also understand that sometimes we might disagree. Remember that in the end, the love that you have for my child matters to me most.

 

Especially for doctors:

6. Be consistent! An obvious statement, I know. However, my experience suggests that a doctor may optimistically offer a great deal of hope in the office for my child only to find just the opposite has occurred in a written report to another colleague. For example, my pediatrician gives me all written reports, because she feels it is my right to have them (I agree). The number of specialists that do not send us written reports astonishes me. Consider offering a summary report to your consumers regarding pertinent findings and be sure you are saying the same thing in those written reports as you do with the family.

 

7. Try to be positive. I think that some people will see the last point and this one as opposite. I do not agree. I think that the doctor whom I spoke of above truly thought that he was just being positive. However, being positive involves pointing out the good things, not saying something that you don’t believe.

 

8. Please understand you are not the only specialist we have. Most children often attend only a single specialist. The particular problem he/she may be experiencing is probably a huge issue for the family of that youngster. However, when you have a child with multiple health needs, that is not the case. Please try to keep this in mind. We literally have a pediatrician and 11 specialists to juggle. Consider this before you send us for another test.

 

9. Consider the guilt factor. Parents of children with special needs are often dealing with a great amount of guilt. The causes of many disabilities remain unknown. This parent questions everything that happened during that pregnancy, any issues that may appear as causation and listens to everyone who has an opinion—and there are many. Please consider this when you are dealing with a child with special needs. Are you about to report something that will add to that guilt? Maybe you should make that phone call instead of your nurse. Could there be another explanation that could help alleviate that guilt? If so, take the time to tell this family.

 

Everyone:

10. Try to see beyond my child’s disability. There is so much more to my son than his disabilities. He loves to laugh. He obviously loves his brothers. Try to see these things, and know that he adds so much to all of our lives. Try to see what he can add to yours. Trust me, it will be worth the effort!

 

Footnote: I hope that other parents can use this list. Maybe your list is a little different, but I have found that many of us share similar feelings. I hope that instead of letting things bother and hurt us, we can find a way to educate others about our beautiful children and how they change our lives.

By Thomas Fields-Meyer and Frances Dinkelspiel

Reprinted from the December 11, 2000 issue of People Weekly Magazine by special permission; © 2000, Time Inc.

In her bedroom at her family's Benicia, California, home, Dionne Quan keeps on video dozens of Disney movies that she has watched over and over, dreaming of one day performing in the kind of films that have captured her imagination since she was a child. But she watches them in her own unique way, pressing her face right up to the picture tube. "My nose is right next to the TV so I can see whatever I can see," says Quan, 22. "Whatever I can't see, I manage to figure out."

Visually impaired since birth, Quan has never let her disability stop her from pursuing her dreams. Now with a voice-over role as Kimi, an energetic Japanese toddler in Rugrats in Paris, the latest animated feature based on the Nickelodeon hit series, she's living them. "She's an incredibly talented kid," says the film's voice director Charlie Adler, 44. "There was no doubt when she came in. She wanted this. She had the ability to do this."

And do it well. Producers had to make some minor adjustments to accommodate Quan's disability while they recorded, repositioning the microphone so it wouldn't pick up the sound of her fingers on her braille script; they also avoided last minute dialogue changes. But before long, any difference between Quan and her castmates melted away. "She gives a fresh immediacy to all of her lines," says her voice teacher Mike Matthews. " I forget she's not sighted. She actually sees more, if you will, than most of us do."

That insight has developed through hard work and dedication - both from Dionne and her parents, Daryl, 46, and Lori, 44, who run a sewing machine and vacuum store in nearby Vallejo. The older of their two children (brother Daryl is 20), Dionne seemed healthy at birth. But four months later Lori noticed that her daughter's eyes weren't following the mobile twirling above her crib. A CAT scan showed she had some brain irregularities, and at 6 months she was diagnosed with hypoplasia - or underdevelopment - of the optic nerve. The unusual condition left her with extremely limited sight, allowing her to make out only some colors and vague shapes.

Determined to help her daughter succeed, Lori rearranged her life to focus on Dionne, speaking to her all day and describing everything she did and saw to orient the child. "I wanted to help her as much as I could so she could achieve her dreams," say Lori, who told her daughter: "You want to act, go act. You want to play ball, go play ball."

Quan didn't take long to choose. Drawn to reading, having learned braille at age 7, she liked to act out the characters in her storybooks. At 10, she enrolled in an after-school program at a San Francisco drama school, where she learned how to make her way around a stage. "Obviously things like pantomiming didn't work so well," she says, "because I couldn't imagine something in my hand when it really wasn't there."

Then, when Quan was 12, her father heard voice-over teacher Samantha Paris on a radio talk show and took Dionne to study with her. "It just opened up a whole new world," Dionne says, because I didn't have to worry about gesturing." In fact, her impaired vision may have heightened her other senses. "She has an incredible ear," says Paris. "To hear this girl sing makes you cry."

Having found her niche, Quan flourished, landing her first commercial job at 14 in an ad for a health maintenance organization. Voice-overs for such projects as jelly bean ads and children's cartoons, including Nickelodeon's The Wild Thornberries, followed. By the time she auditioned for Rugrats, Quan was a pro. "It was a challenge to find a voice that would meld with the ensemble and have the same youth, the innocence, the vitality," says talent director Barbara Wright, who chose Quan from 200 hopefuls. "Dionne had a unique, very dear quality."

So dear, in fact, that she was promptly offered - and accepted - a recurring role on the Rugrats television show. Early next year Quan plans to move out of her parents' home and into one she will share with brother Daryl, a UCLA student, in Los Angeles, which presents its own challenges. "It's going to be a good experience," she says. "But in a way it's scary." To prepare, she got special training in programs that teach blind people basic skills. And for the first time, she learned to write in conventional script - for the express purpose, she says, of signing autographs.