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from the Winter 98 issue
Versión Español de este artículo (Spanish Version)

by Sharon Nichols, Technology Specialist, TSBVI Outreach

More and more people are accessing the phenomena known as the World Wide Web, which tends to be referred to interchangeably as the Internet. Conversely, more and more businesses, individuals, organizations and universities are posting information in various forms onto the World Wide Web. This prospect can make finding specific information on the World Wide Web an enormous task. With this in mind I have compiled some interesting websites for teachers, parents and students who are visually impaired. These sites offer an incredible amount of information, fun, and links to many other sites on the World Wide Web. These sites are family oriented and mostly educational, although there are two sites dedicated to games.

http://www.viguide.com - A Parent's Guide to Resources about Visual Impairments - Don't let the name fool you, this site has a lot of information for teachers and parents alike. The main headings are: What's New, Organizations, Magazines, Bookstore, Legal, Networking, Medical, Assistive Technology, Education, and Assistive Products. This site also contains a searchable on-line encyclopedia.

http://www.4kids.org/coolspots   Coolspots 4 Kids - This is one site which is packed with so much information and so many links that at times it can be overwhelming. By the way, this site is for kids, parents, and teachers. The resources include: newsletter (this one is for kids), Ask Amy (kids advice column), 4kids Detectives (weekly clues and solutions), Creatures (animal information and links), Arts (excellent ideas for projects, publishing site, on-line art gallery for kids 0-17, and on-line illustrated children's books), Brainsweat (virtual surgeon, bubbles, Cyber Ed Truck, Channel One, Dr. Math, eating healthy, history, and exploration), Fun and Games (Alice in "World Wide" Wonderland, athletes in snow, build your own submarine, on-line coloring, Girlsworld, and interactive games), Be a Hero (kids working to make a difference, a hero is more than a sandwich, and Recycle), Fantastic Voyages (African art, ancient ones, castles, giant squid, museums, and Explore the Heart on-line).

http://www.kididdles.com - Index of All Songs - This site contains the words to over 300 kid's songs. Some samples are All Together Now, The Animal Fair, and There's a Hole in the Bucket. This site also contains a searchable database, e-mail, and related links (musical and family oriented).

http://www.seedlings.org - Seedlings - On-line shopping for high quality braille books for children. Categories include Preschool, Beginning Readers, Independent Readers, and Kids of all ages (braille shirts, tote bags).

http://www.tsbvi.edu - Of course, we think our website at TSBVI ranks as one of the most interesting around.

by Laura Nutt, Grand Prairie, TX

Editor's Note: Thank you, Laura, for agreeing to share your poetry with us. Laura is a 13 year old who attends school at Truman Middle School in Grand Prairie. Laura, her brother, and her father recently received their first degree black belts in karate. Both Laura and her brother, William, have cone-rod degeneration. Although her vision is somewhat better than his, she has only about 30 degree visual fields and can not see past 10 feet. She and William study karate at the Grand Prairie Karate Academy under the guidance of Brax Boyd. Another interest of Laura's is writing. Laura and her brother are working on a book this summer about learning karate. Laura met Patrick Houck, who is from Ashdown, Arkansas, at the "Visions for the Future" workshop in Texarkana, TX. When her teacher gave her the assignment of writing a poem about someone who inspired her, she chose to write about Patrick, a young man who inspires many people with his talent and determination. Thanks Jane Houck for sending this poem to me.


Glass Eyed Inspiration

by Laura Nutt, Grand Prairie, TX

As I sit in a cold hard chair
I wonder where this man is
This man they say is so divine
This man they say is blind
I kick the leg of this metal chair
A bit frustrated as I stare
At a blank white wall
The others around begin to shout and play
And I think how can they be so bold and
How can they be so jumpy
To me I am in a cave filled with crazy noisy play
I know I should stay and listen
But this urge to run to Mom is growing
And just about when I've had enough
The crowd hushes
I hear footsteps and a voice giving directions
My interest grows
My ears strain to listen
I squint at a man in white
I wonder
Is this the man they speak of
Could this man possibly be the one amusing thing today
He speaks and I am excited
He tells of a gun shot to the head
His sudden blindness
The glass eyes he has to wear
In replace of his own ruined by a bullet
He starts the demonstration
A kata
Some sparing
The whole time I am awed by his performance
The agility of his kicks
The power of his punches
The way he finds his opponent
A loud crack and a one-inch board is broken
Then two
I can hardly believe the truth
This man with no real eyes renders the audience speechless
With his amazing talent
He calls me up
I am shown a kick
My legs placed in the right position
I hardly remember the incident
Just the feelings running through me
When the man is gone I beg my Mom
Let me take karate
She refuses
But I persist

A year later I stand in gomamt
In a dojo
In front of my sensei
All because of one man with glass eyes

from Sumer 1997 issue

by Kris Cué, Austin, TX

Helen Keller once said, "Life is a daring adventure or it is nothing." In August 1994, I discovered I was legally blind as a result of the natural progression of retinitis pigmentosa (RP). I have since learned this is part of a bigger picture known as Ushers Syndrome, which is a genetic disorder involving RP and hearing loss.

My personal feelings that emerged after this discovery were overwhelming. I was totally clueless as to what to do or who to talk to about this. At the advice and strong encouragement of my dear sister-in-law, Julia Cué, I very reluctantly contacted the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) , where she had worked. Julia felt this contact would provide the support and assistance I desperately needed both at home and at work.

This led to my initial contact with Randy Feille, Supervisor of Deaf-Blind Services at the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) . After services had begun, Randy and I got together with a couple of other individuals with Ushers to discuss the possibility of beginning an Ushers Syndrome Support Group in Austin. The idea to begin a group came largely from four Statewide Ushers Syndrome Conferences and encouragement from individuals like Dorothy Stiefel, Executive Director of the Texas Association for Retinitis Pigmentosa (TARP).

Since this early meeting, the group, with much help from Deaf-Blind Specialist Jack Earwood, became known as US TOO! (because it is predominately comprised of individuals with Usher Syndrome Type II). Monthly meetings have consisted of guest speakers such as Psychologist Linda Eldridge and Psychotherapist Beth Dennis, both of whom spoke on relationships, and Rehabilitation Teacher Pam Scott who spoke about "living in a sighted world." Potlucks and ordering pizza have also made their way onto our agendas!

Future endeavors include a group scrapbook, more pizza, and a summertime social scheduled for June 27th in conjunction with Helen Keller's birthday. In tandem with this, information on available services, adaptive equipment, Deafblind culture, and public awareness will be shared at future meetings.

We are hoping to expand our horizons by helping other cities to begin support groups. Already, a support group has begun in San Antonio and plans are being made for a support group in Houston. We are open to new members and new ideas. If you would like more information about any of these groups, please contact me through Randy Feille's office at (512) 459-2575.

Editor's Note: Kris Cué was born and raised in Austin. Though she was diagnosed with a hearing impairment at the age of 4, it was only in her third year of college that she learned she had Ushers Syndrome (Type II). However, this did not stop her from completing a degree in Deaf Education, although she later made the decision not to teach.

Kris worked for seventeen years at Texas Rehabilitation Commission as a Disability Examiner for SSI. When it became difficult for her to keep up with the volume of reading required by this job, she left TRC. After looking at other work and experiencing doors being closed to her, she was feeling that her options had disappeared. Ironically, her sister-in-law invited her to a Tupperware party hosted by a women who was blind. As Kris put it, "I figured if she could do it so could I." So Kris is currently a Tupperware and Partylite Consultant.

I asked Kris how her parents felt when they learned about her having Ushers Syndrome. Even though Kris was much older and quite independent, it was still devastating news to her Mom. (Her Dad had passed away before she was diagnosed.) Kris says her mom still worries about her ability to handle things on her own. Kris' advise to parents of children with Ushers Syndrome is to get support early on for yourselves and your child.

Kris is very willing to be a resource to parents or individuals who are dealing with Usher Syndrome. You may contact her by phone at 251-2550 (voice).

You may also be interested in these Websites if you are an Internet user:

DB-LINK http://nationaldb.org/
A Deafblindness Web Resource - http://www.deafblind.co.uk/

You might also enjoy getting on these listservs. There are many interesting people to meet out there in cyberspace:

Ushers Syndrome Mailing List -
Deaf-Blind Mailing List -

This technology offers an additional avenue of support to individuals with Ushers Syndrome and their families both in terms of information about the syndrome and connections with others who are dealing with these unique issues.

Por Linda Hagood, Especialista Educativa, Departmento Outreach TSBVI
con la ayuda de Kate Moss, Coordinadora de Capacitación Familiar

Nota del Editor: En abril de este año la Región 20 del Centro de Servicio Educativo y el Proyect TSBVI Outreach de sordoceguera, patrocinaron un taller presentado por el Dr. Jan van Dijk de Holanda. El Dr. van Dijk ha sido reconocido desde hace mucho por su trabajo en el desarrollo de programación educativa para individuos con sordoceguera. Su trabajo está en la base de la mayoría de la programación que tiene lugar en este país para los infantes con sordoceguera. Linda Hagood, quien de manera reciente se ha incorporado al equipo del Proyecto de Sordoceguera en el departamento Outreach de TSBVI, ha creado el siguiente artículo como resultado de la información que recibió durante este taller y sus años de experiencia al trabajar con infantes que tienen sordoceguera. Pienso que ustedes encontrarán útil este artículo al preocuparse de Ia comunicación para su hijo(a) con sordoceguera. Si tiene cualquier pregunta sobre la información aquí presentada, comuníquese con Linda al (512)454-8631, ext. 188.

Durante su presentación más reciente en San Antonio, el Dr. Jan van Dijk afirmó que la meta de la programación para individuos con sordoceguera es "incluir a la persona en la conversación." En mi trabajo como especialista en comunicación con niños sordoinvidentes o incapacitados visuales, me ha interesado de manera creciente el concepto de "conversación" cuando se aplica a los niños con capacidades limitadas de lenguaje.

¿QUÉ ES LA CONVERSACIÓN PARA LOS INFANTES CON CAPACIDADES DE LENGUAJE LIMITADAS?

La conversación es lo que frecuentemente queremos cuando decimos que queremos mejorar las habilidades de "comunicación" o de "lenguaje" de los niños con discapacidades. A la conversación la podemos definir con un diálogo entre dos personas que consiste en múltiples intercambios, los cuales se equilibran entre los dos hablantes alrededor de un tema de interés compartido. Con mayor frecuencia pensamos usar palabras para realizar nuestros intercambios en una conversación, pero también podemos utilizar acciones, objetos, expresiones faciales y movimientos como nuestra respuesta durante una conversación. Piense en las veces en que usted encoge sus hombros, le da un objeto a alguien o mueve los brazos como respuesta a un comentario o a una pregunta. La conversación difiere de otros tipos de interacciones comunicativas debido a que el centro de nuestra interacción se encuentra alrededor de un tema común, más que en comunicar necesidades o deseos concretos, o en proporcionar o seguir instrucciones.

Las interacciones conversacionales con los infantes con capacidades de lenguaje limitadas, deben incluir:

  • un formato de intercambio breve en el cual el adulto y el(a) niño(a) se involucran de manera alternativa en acciones con o sin objetos;
  • seguir la iniciativa del(a) niño(a) en términos de interés o atención compartida hacia objetos;
  • una atmósfera lúdica, en que tanto el adulto como el(a) niño(a) disfrutan el tiempo que pasan juntos;
  • dirigir la comunicación con el propósito de "comentar", "describir" o "pedir información."

Mientras observaba al Dr. van Dijk al evaluar a un niño pequeño llamado Tabor, me sorprendió la naturaleza de conversación tan poco exigente y la forma de conversación de sus interacciones. Con frecuencia hemos enseñado sin querer a nuestros hijos a esperar que todas las interacciones consistan en "respuestas de los adultos" seguidas de las "solicitudes de los niños" o "respuestas de los menores". Siento que eso sucede en parte debido a que no estamos seguros de la forma en la que se percibe "una conversación" cuando el(a) infante posee un lenguaje limitado. Veamos una "conversación" que el Dr. van Dijk tuvo con Tabor.

El Dr. van Dijk empezó por sentar a Tabor y a su madre junto a él sobre el piso. Trabajando al principio por medio de su madre, el Dr. van Dijk le dio instrucciones para que le diera a Tabor su objeto favorito, "su" calcetín. Después de que estuvo un momento jugando con él, se introdujo un segundo calcetín fabricado de un material distinto, ofreciéndoselo o colocándoselo sobre alguna parte de su cuerpo.

Tabor colocaría "su" calcetín a su derecha, exploraría el segundo calcetín de la misma manera en que lo hacía con su favorito, y luego lo soltaría para buscar "su" calcetín. Esta secuencia de introducir otros calcetines, al permitir a Tabor examinar el nuevo calcetín, soltarlo y volver sobre su calcetín, continuó. Algunas veces Tabor ofrecería varios calcetines a la vez y entonces escogía el que quería inspeccionar. El Dr. van Dijk incrementó de manera gradual su participación con esta interacción hasta que se convirtió en la persona principal en la interacción con Tabor. Como Tabor cayó en la cuenta de este juego, el Dr. van Dijk comenzó a alterar los calcetines amarrando un nudo a la mitad, amarrando dos calcetines juntos o colocando un objeto dentro de uno de ellos. Antes de esta interacción, el Dr. van Dijk había visitado a Tabor y a sus padres y había aprendido varias cosas acercas del mismo Tabor:

  1. A Tabor se le había diagnosticado parálisis cerebral y retinopatía por nacimiento prematuro con desprendimiento de retina en el ojo izquierdo. Es probable que perciba algo de luz. Tabor tuvo pérdida moderada del oído como resultado de complicaciones de una disfunción a la edad de cuatro años. Usa dos aparatos de audición al nivel de la oreja. Responde a las voces y es capaz de discernir entre las voces que le son familiares y las desconocidas. Sin embargo, no busca de manera constante las fuentes de los sonidos ni los asocia con significados.
  2. El juguete favorito de Tabor era uno de sus calcetines. Ponía el calcetín en su boca, deslizaba su mano dentro del mismo, o lo jalaba con su mano mientras lo sostenía con sus dientes. También se desplazaba por la casa por sí mismo y hurgaba entre el montón de ropa para encontrar su calcetín.
  3. Tabor disfrutaba los juegos de movimientos con su madre. En estos juegos la mamá de Tabor le ayudaba a aplaudir con sus manos o tocaba algunas partes de su cuerpo o lo mecía mientras le cantaba canciones.

El Dr. van Dijk aprovechó este conocimiento básico para ofrecer "temas" sobre los cuales él y Tabor podían sostener una conversación. También utilizó a la mamá de Tabor para "hacer una introducción" con el objeto de mejorar el nivel de comodidad de Tabor para interactuar con él. Todos los elementos de la conversación estuvieron presentes durante su interacción.

Intercambio de turnos: el Dr. van Dijk presentaba el calcetín, Tabor lo manipulaba. El Dr. van Dijk presentaba otro, etc.

Siguiendo la iniciativa del niño: el Dr. van Dijk se centraba en el objeto. Tabor estaba muy interesado y no lo presionó para que inspeccionara el objeto de alguna forma distinta a las que él utiliza comúnmente para interactuar con el objeto.

Atmósfera de juego: El paso fue lento y relajado, no se le pidió a Tabor que hiciera nada. Su madre, con quien estaba más confortable, estaba incluida en la interacción.

Comentar, describir, solicitar información: las acciones de Tabor decían "Me gusta más este calcetín. Es mi calcetín. Este calcetín es como mi calcetín, puedo hacer las mismas cosas con él, pero también es distinto. Me gusta la manera en que se estira. No me gusta la forma en que se siente éste otro." Las acciones del Dr. van Dijk decían: "Sé que te gusta más ese calcetín, pero puedo poner estos dos calcetines juntos para ti. Tu calcetín y el otro calcetín sostendrán esta bola en su interior. Algunos calcetines se estiran más que otros, a ti te gusta estirarlos, etc."

¿POR QUÉ ES IMPORTANTE LA CONVERSACIÓN PARA EL(A) INFANTE CON LENGUAJE LIMITADO?

Siento que debemos concebir a la conversación como un componente esencial de la comunicación e incluirlo como un aspecto importante de la programación para todos nuestros alumnos. Como lo señaló el Dr. van Dijk, la conversación "puede ocurrir en todos los niveles", incluso con personas que tienen desarrollado poco o de ninguna manera el lenguaje formal de señas o el hablado.

Los padres y maestros me dicen seguido que les gustaría ser capaces de tener "conversaciones" con sus hijos que no utilizan o no entienden ni el lenguaje de señas o las palabras habladas. Sin proponérmelo, he desalentado en ocasiones esta prioridad. Sentía que era más "funcional" centrarse primero en eseñar a los niños formas de comunicar sus necesidades y deseos inmediatos, concretos, y escoger entre diversas actividades. He cometido el error de sugerir que aguardemos la "conversación" para más adelante, cuando el(a) niño(a) haya conseguido establecer un vocabulario mayor o un sistema de comunicación más formal.

Encuentro, sin embargo, que incluso depués de que un(a) niño(a) ha aprendido a pedir otra ración en el almuerzo, a escoger entre viajes al boliche o al restaurante, o a seguir las indicaciones del(a) maestro(a), rara vez puede interactuar con otros. Cuando intenté enseñar habilidades de interacción social, el foco de atención era, frecuentemente, saludos aislados u otros ritos sociales. Estos no eran entendidos necesariamente por el(a) niño(a), pero lo(a) ayudaban a "encajar" en ambientes más normales.

Centrar nuestra enseñanza de comunicación exclusivamente en "habilidades funcionales," tales como pedir, escoger alternativas o participar en ritos sociales, no conduce necesariamente al(a) niño(a) a establecer en interacciones más largas o a mejorar la calidad de sus relaciones con sus compañeros o adultos. Los niños necesitan aprender que en ocasiones interactuamos con el propósito de divertirnos juntos, lo que es una "recompensa" hacia nuestro comportamiento comunicativo. Estas interacciones de conversación pueden llevar de manera natural al(a) infante a una comunicación más "funcional" tal como a pedir, escoger o comentar.

CUATRO PROBLEMAS EN LA ENSEÑANZA DE HABILIDADES DE CONVERSACIÓN Y ALGUNAS SOLUCIONES

Algunos de los problemas específicos que hemos encontrado en la Escuela Texas para los Invidentes e Impedidos Visuales (Texas School for the Blind and Visually Impaired) al enseñar habilidades de conversación a la gente con sordoceguera o invidente con discapacidades múltiples, se presentan en la parte siguiente de este artículo. Se hará énfasis en conversar con niños(as) que tienen poco o ningún lenguaje formal.

Problema 1: El(a) infante tiene una exposición limitada a las situaciones de conversación.

Idea: Destine momentos especiales para conversar.

Conversar con cualquiera implica disposición para apartar tiempo para que ocurra la interacción. Tenemos conversaciones por teléfono, al tomar una taza de café, alrededor de la mesa del comedor, mientras vamos en automóvil, etc. Nos tomamos el tiempo para concentrarnos en otra(s) persona(s) y nos dedicamos a la interacción sin importar el ambiente en que ocurre la conversación. Destine momentos específicos del día o actividades particulares para conversar con su hijo(a). Puede ser justo antes de irse a dormir, antes de preparle el almuerzo o antes de comenzar una actividad especial que harán juntos. Destinar de manera consciente momentos especiales para "platicar" con su hijo(a) provoca que sea más factible que estas interacciones ocurran.

Idea: Modifique las actividades " funcionales para concentrarse en el desarrollo de habilidades de conversación, tales como aprender a seleccionar un tema, participar en la interacción e iniciar, mantener o terminar con alguna interacción.

Las conversaciones que ocurren durante una actividad rutinaria, incluyen, de manera frecuente, interacción compartida o de juego. En ocasiones estas actividades familiares ayudarán al(a) infante a aprender el arte de la conversación de mejor manera que las situaciones que se establecen para provocar solicitudes o toma de decisiones.

Se muestra a continuación un ejemplo de la manera en la que se pueden incorporar tanto las habilidades funcionales como la conversación durante la hora normal del baño. Tales consejos resultan apropiados para un(a) niño(a) que no utiliza el lenguaje formal de señas ni tampoco el hablado.

Las habilidades "funcionales" sobre las que se trabaja son:

  • frotar las partes del cuerpo cada vez que se toquen
  • quitar la ropa
  • escoger jueguetes favoritos para el baño

Las habilidades "de conversación" sobre las que se trabaja son:

  • mantener la interacción al completar cinco (5) turnos consecutivos
  • iniciar la actividad familiar de juego
  • escoger y/o cambiar el centro de la interacción

Las actividades "de conversación " (determinadas por el interés del(a) infante):

  • Juegos de cosquillas: "Este puerquito" o "¡te caché!" Al principio, el(a) infante puede completar su turno al sonreír durante las pausas, después al extender su pie o al hundir la cabeza cuando el adulta diga "¡te caché!;"
  • Hacer burbujas mediante un popote sobre varias partes del cuerpo en una secuencia predecible;
  • Frotarse los brazos mutuamente (por turnos con el adulto o hermano(a) );
  • Utilizar pistolas de agua para mojar la misma parte del cuerpo del(a) niño(a) usando señas vocales y tactiles para que pueda anticipar los chorros;
  • Jugar con globos de agua. El adulto llena los globos, algunos con aire y otros con agua y los amarra juntos. Intercambian turnos para jugar con ellos apretándolos para comparar los llenos con los vacíos o los llenos con aire con los llenos con agua.

Idea: Utilizar rutinas o actividades familiares repetitivas para desarrollar patrones de espera y anticipación que puedan establecerse para proporcionar al(a) infante una manera de hablar sobre el presente, el pasado y el futuro.

Los niños sin lenguaje formal pueden tener problemas para entender las conversaciones sobre algo que ha sucedido en el pasado o que ocurrirá en el futuro. Para desarrollar este sentido del tiempo es importante empezar con conversaciones que estén relacionadas temporalmente con la experiencia actual. Conforme el(a) niño(a) aprenda a conversar sobre eventos familiares repetitivos en su "presente" usted podrá proporcionarle formas para ayudarlo(a) a empezar a conversar acerca de actividades en el pasado o en el futuro utilizando calendarios, cajas de memoria y libros de referencia. El Dr. van Dijk explicó la importancia de "anunciar el evento, discutirlo". Afirmó que es "esencial para los seres humanos" tener un pasado, un presente y un futuro.

El Dr. van Dijk enfatizó la importancia de desarrollar patrones de expetativas y anticipación por medio de la utilización de rutinas o actividades familiares repetitivas tales como el "juego del calcetín". Cuando se anuncia o se empieza una actividad, es importante observar los signos de anticipación y de reconocimiento del(a) niño(a). Algunas señales de anticipación pueden incluir:

  • un cambio de ánimo (ponerse excitado o nervioso);
  • uso apropiado de objetos (p. ej. empezar a tratar de empujar el carro del supermercado, colocar el cepillo de dientes en la boca);
  • moverse hacia el área donde generalmente ocurre la actividad (ir hacia la puerta cuando la madre saca las llaves del bolso).

El momento en que un(a) niño(a) anticipa o espera que algo suceda es a veces el momento en que se comunicarán y nuestras conversaciones pueden ser entonces más efectivas y significativas. En el punto de la anticipación, deténgase un momento para tener una conversación con el(a) niño(a) antes de continuar con la rutina.

Por ejemplo, un(a) niño(a) podría anticipar incialmente un viaje a la tienda de comestibles cuando sus manos se colocan sobre el carrito en la puerta de entrada de la tienda. Para este(a) niño(a), la "conversación" puede incluir explorar el carrito, escoger dónde sentarse, al frente o atrás, abrocharse y desabrocharse el cinturón, mostrarle la envoltura de dulces que se comprarán más tarde en la tienda. Otro(a) niño(a) puede anticipar este viaje a la tienda más temprano en la rutina. Cuando su madre hace una lista en la cocina o junta las botellas para regresarlas a la tienda, el(a) niño(a) puede prever a dónde se dirigen. Para este(a) niño(a), la "conversación" sobre el viaje a la tienda podría incluir ayudar a hacer la lista de las compras dibujando o colocando imágenes o etiquetas en la misma. Podría juntar las botellas a regresar o darle dinero para subirse al carrusel o comprar goma de mascar en una máquina fuera de la tienda.

Una "caja de discusión" proporciona una manera de anunciar y de discutir un evento que está a punto de ocurrir. La caja de discusión (por lo general una canasta de plástico u otro recipiente) contiene varios objetos que el(a) niño(a) puede utilizar durante alguna actividad. Una caja de discusión sobre el desayuno puede incluir un tostador, un plato, una taza, una servilleta y un cuchillo. Cuando el(a) niño(a) se siente a la mesa a desayunar, puede sacar los artículos uno por uno a la vez e inspeccionarlos por sí mismo(a). (Puede mostrar alguna anticipación de la secuencia o función de los objetos por la forma en que los inspeccione.) Papá o mamá pueden ayudarle a "imitar" la manera en que se usan los objetos mientras los extrae (p. ej. presionar el botón de encendido del tostador, beber de una taza). De esta manera, el(a) niño(a) puede ser expuesto(a) a una "conversación" que únicamente se desvía someramente de la actividad, en un momento en que él o ella está esperando una rutina familiar.

Cuando un(a) niño(a) demuestra anticiparse a una serie de actividades con pistas presentadas justo antes de empezar las mismas, él o ella estará listo(a) para utilizar un sistema concreto de calendario. Los sistemas de calendario proporcionan una manera de programar eventos que son importantes para un(a) infante. Los eventos pueden representarse de varias formas, utilizando objetos, imágenes, símbolos tactiles o palabras escritas en Braille, dependiendo de la forma y habilidades de comunicación preferidas del niño(a). Estos símbolos pueden colocarse en una caja o sobre un calendario de pared más tradicional. Los cuadros de tiempo reflejados en el calendario pueden ir desde dos actividades que ocurrirán en el transcurso de un periodo breve hast actividades o eventos que abarquen un mes entero o incluso un año.

Tener una conversación sobre el evento que ocurrirá puede hacerse de manera natural durante el tiempo del calendario. Sin embargo, aunque es importante hablar sobre una actividad después de haberse realizado, me he percatado de que los niños y los adultos demuestran mayor interés en hablar sobre los nuevos aspectos de los eventos pasados. Por ejemplo, en lugar de beber coca-cola en un restautante, se derramó. Llenamos los globos con agua ahora en lugar de hacerlos estallar. La conversación podría incluir pantomima o dibujos de tales aspectos nuevos e interesantes de la actividad.

Problema 2: Los niños no entienden los roles ni los rituales involucrados en la conversación que les permite: mantener, iniciar y finalizar interacciones, o cambiar de tema.

El(a) niño(a) con impedimentos sensoriales podría no estar recibiendo las señales visuales o habladas que se dan por lo general durante las conversaciones. Aprender a tomar su turno, iniciar, mantener y detener interacciones o cambiar temas de conversación son habilidades que es necesario enseñar a veces. Pueden requerir instrucción explícita y señales concretas para aprender los comportamientos esperados tanto en conversaciones verbales como en las no verbales.

Mantener Interacciones por Turnos

Idea: Use juegos sociales para enseñar al(a) niño(a) cómo sostener una interacción

Los juegos sociales ritualizados, como el del "Susto", el "Cochinito" o el de los "Hermanos deditos", juegan un papel importante en la enseñanza de todos los niños, incluso en la de aquellos con discapacidades, de cómo sostener una interacción con múltiples turnos. Estos juegos tienen características que los hacen adecuados para enseñarles a los niños a tomar su turno en las conversaciones:

  1. Estructura simple y repetitiva
  2. Atmósfera de juego
  3. Señales claramente marcadas para la respuesta del(a) niño(a)
  4. Múltiples oportunidades para la respuesta del(a) niño(a)
  5. Roles reversibles

Al adaptar estos juegos para su hijo(a), piense en la manera en que la sordera o la ceguera podrían impactar a tales características. Por ejemplo, el(a) niño(a) sin visión necesitará "sorpresas" tactiles y auditivas, antes que visuales para entender lo que es un "Susto." Las señales visuales acostumbradas (esconder la cara) no están disponibles.

Las características de los juegos sociales también deben tenerse en cuenta cuando se inventen nuevos juegos para su niño(a). Las canciones que incluyen el contacto de "todo el cuerpo" con el padre y que utilizan movimiento, proporcionan una buena estructura para aprender a mantener en curso la interacción, al indicar cómo continuar el movimiento durante las pausas, a mantener la atención conjunta, la risa u otras respuestas afectivas. El Dr. van Dijk sugirió actividades motrices con un patrón predecible y consistente para proporcionar una base importante para el aprendizaje de la conversación.

El Dr. van Dijk desarrolló un juego social con Tabor alrededor del juego con sonido, que había sido identificado previamente como un "comportamiento auto-estimulante." Empezó a cantar una breve melodía en el oído de Tabor, después se detuvo para permitir que su madre le cantara otra tonada. Continuaron turnándose en la canción hasta que Tabor empezó a entender la estructura de la interacción; luego modificó el tono, la intensidad y las frecuencias de sus cantos para contribuir a mantener su interés. Tabor les demostró que entendía y disfrutó el juego inclinándose hacia el siguiente "cantante" durante las pausas de la interacción, y al sonreír o reírse cuando cambiaban las canciones. De estas formas sutiles, completó su turno y era capaz de mantener la interacción por cerca de 15 minutos.

Idea: Las actividades funcionales de múltiples pasos con roles claramente definidos y predecibles, también pueden ofrecer a los niños una manera de sostener una interacción.

La mayoría de las actividades pueden separarse en pasos múltiples que pueden proporcionar la oportunidad de conservar los turnos. Por ejemplo, al lavar los trastes la secuencia puede ocurrir de la manera siguiente:

  • Adulto: abre la llave del agua caliente
  • Niño(a): abre la llave del agua fría
  • Adulto: le da al niño(a) jabón para trastes
  • Niño(a): exprime el jabón en el fregadero
  • Adulto: pone los platos en el fregadero
  • Niño(a): frota los platos con una toalla y se los da al adulto uno por uno
  • Adulto: ayuda al(a) niño(a) a sacar el tapón del fregadero

Aunque el niño(a) necesita alguna ayuda inicialmente para realizar su parte en esta actividad, es importante que esté presente el formato del cambio de turnos, para que el(a) niño(a) aprenda que dicha actividad está estructurada mediante el uso de roles consistentes. Podría necesitarse la intervención de un segundo adulto para ayudar al(a) niño(a) a cumplir su turno, para no confundir esta estrategia de cambio de turnos. Sin embargo, es importante no estructurar todas las actividades de esta manera o usted correrá el riesgo de hacer al(a) niño(a) demasiado responsivo a las solicitudes del adulto.

El Dr. van Dijk también hizo énfasis en la importancia de la consistencia en la manera en que se estructuran las actividades para un niño que sea sordoinvidente. Alterar de manera significativa la estructura de alguna actividad (p. ej. pedir al(a) niño(a) "que lave por sí mismo(a) los trastes" con la ayuda de un adulto) podría ocasionar que el(a) niño(a) concibiera a dicha actividad de una manera muy diferente, y le podría provocar confusión acerca de lo que se espera de él o de ella.

Idea: Su principal prioridad debería ser centrarse en mantener la interacción durante más turnos.

Los niños que empiezan a desarrollar algunas habilidades de lenguaje serán, inevitablemente, cuestionados por algunos adultos. Es importante evitar sobrecargar al(a) niño(a) con preguntas, ya que éstas no son, por lo general, la mejor manera de conservar el curso de la interacción. Aun cuando los niños tienen éxito al contestar preguntas, hemos encontrado que las preguntas en ocasiones conducen a las interacciones a un "callejón sin salida", que consisten en una iniciación única de parte de un adulto y una respuesta única de un(a) niño(a). Entre las estrategias más útiles para mantener el curso de un conversación podemos mencionar:

  • seguir la iniciativa del(a) niño(a) al actuar sobre un objeto mencionado por él o ella, o proporcionar el lenguaje para describir lo que el(a) niño(a) esté haciendo o en lo que esté participando en ese momento.
  • ampliar lo que dice el(a) niño(a) (imitar lo que hace y añadir acción propia).
  • responder al niño(a) de alguna manera, incluso si usted no entiende el intento de su comunicación.

Iniciar Interacciones

Los niños con sordoceguera son pasivos con frecuencia en sus interacciones, esperando siempre que sea el adulto quien inicie la interacción. El Dr. van Dijk enfatizó la diferencia entre el(a) niño(a) que "espera y ve", y el(a) niño(a) que se encuentra en un estado de "anticipación," en el que está listo(a) para aprender. Algunas estrategias útiles para estimular al(a) niño(a) para ser el(a) de la iniciativa incluyen:

Idea: Interprete los comportamientos no comunicativos como "iniciadores de conversación". Cuando el(a) niño(a) se mueva a un área y comience a buscar un objeto familiar o un juguete, el adulto puede responder como si fuera un intento para interactuar y conversar. Por ejemplo, un(a) niño(a) siempre va a sentarse en su mecedora favorita cuando llega a casa después de la escuela. El adulto lo sigue, le ayuda a quitarse los zapatos y los calcetines, y después lo mece gentilmente. De manera periódica, el adulto se detiene para permitirle expresar oportunidades para continuar la "conversación" e indicar que continúe.

El(a) infante aprende que sus acciones pueden impactar a otras personas, y que esas personas en su ambiente responden a su comportamiento intencional. Puede empezar conversaciones al igual que responder a lo que hacen los otros. Es importante ser sensible al nivel de molestia que es aceptable al(a) niño(a) durante este tipo de interacción. Por ejemplo, si el(a) infante no quiere compartir una interacción (p. ej. se voltea hacia el otro lado, lejos del adulto o sostiene con mayor firmeza su silla cuando se acerca el mismo) esto deberá interpretarse como un "no" a la pregunta de los adultos: "¿Quieres mecerte conmigo?" Es importante respetar su comunicación y su necesidad de estar solo durante algún tiempo.

Idea: Haga ligeros cambios en las rutinas familiares.

Cuando el(a) niño(a) demuestre, por medio de comportamiento anticipatorio que sabe qué es lo que sucederá a continuación, usted podrá estimularlo(a) para iniciar una "conversación" al aventarle una bola curva. Añadir alguna novedad a la rutina, podría provocarle que inicie la acción predicha o solicite un objeto necesario para comenzar la actividad. Por ejemplo, en lugar de propocionarle la cuchara de madera para agitar el jugo durante la hora del refrigerio, sustitúyala por una de plástico. Espere a que él o ella responda; puede buscar la cuchara "correcta" o pedirle ayuda al adulto. Esto le permitirá saber a usted si el(a) niño(a) está consciente de lo que pasa regularmente y también le permitirá tener una conversación acerca de los diferentes utensilios que pueden servir como agitadores, las similitudes y diferencias entre cucharas, etc.

Idea: Ayude al(a) niño(a) a localizar un compañero para la conversación.

Es importante para él o para ella con problemas de visión y auditivos, saber dónde localizar a alguna persona familiar si quieren iniciar o mantener una interacción. Por ejemplo, los padres deberían tratar de sentarse en el mismo sillón, cerca del(a) niño(a) durante la cena. Mientras juega en el arenero, permítale saber dónde se encuentra usted. Es útil "tocar base" frecuentemente con su hijo(a) cuando esté jugando fuera o dentro de su cuarto, utilizando contacto físico y la voz al colocarse dentro de su campo visual. Estas interacciones momentáneas pueden ofrecer al(a) niño(a) importantes recordatorios de que usted está disponible en caso de que él o ella quiera iniciar una conversación.

Terminar Interacciones y Cambio de Temas

Todos empleamos tácticas para "finalizar conversaciones" ("Necesito hablarle a alguien allá afuera.") y cambios de temas ("Eso me recuerda algo que he querido preguntarte.") para controlar nuestras interacciones con otra persona. Cuando el(a) niño(a) que es sordoinvidente le dé una señal de que no está disfrutando la interacción, es fundamental que usted cambie el tema o bien termine con la interacción.

Idea: Observe la atención del(a) niño(a) y su nivel de interés para determinar cuándo cambiar los temas o finalizar con la interacción.

Es importante responder a los cambios de atención y a los niveles de interés como una manera que tiene él o ella de terminar una "conversación". El Dr. van Dijk se dio cuenta después de un tiempo que Tabor estaba tomando todos los calcetines y los estaba poniendo a su derecha. El Dr. van Dijk pareció interpretar esto con el significado: "Dénme algo nuevo". Él doctor cambió a un tema nuevo, el "juego de canciones", para mantener a Tabor atento. Un(a) niño(a) puede alborotar, voltear su cabeza, soltarse o mostrar algún otro comportamiento para indicar su necesidad de cambiar el tema o finalizar la conversación. Ser un buen observador de las respuestas del(a) niño(a) es clave para tener una conversación.

Idea: Enseñe maneras más convencionales de finalizar una interacción.

Algunos niños pueden carecer de estrategias adecuadas para terminar una interacción. Podría resultar útil enseñar al(a) niño(a) a rechazar o a terminar una actividad al hacer a un lado objetos gentilmente o al utilizar una canasta de calendario "terminada". Ambas estrategias pueden enseñarse en situaciones sin estrés. Por ejemplo, el(a) niño(a) hace a un lado el artículo que no desea en actividades de selección; o mueve a un lado su plato como el paso final en una actividad de cena. Un niño que conocemos aventó pedazos de globo como una forma de terminar una actividad con globos. Él era capaz de generalizar este paso final en la rutina como una forma de decirnos: "No quiero jugar este juego ahora." Era muy importante para nosotros respetar su solicitud de finalizar una actividad. Generalmente le damos un tiempo a solas antes de intentar otra interacción.

Problema 3: Los niños podrían no tener suficiente materia de que hablar (temas limitados).

Los temas son las "materias" de las conversaciones; una conversación con un amigo puede incluir temas como el matrimonio, el trabajo, los niños. Nuestra selección de temas refleja lo que sabemos acerca del mundo y en dónde radican nuestros intereses. El(a) niño(a) con impedimentos sensoriales necesita de nosotros para traerle el mundo, para encontrar las cosas que son valiosas e interesantes. Él o ella también necesitará ayuda para compartirlas con nosotros. Ayúdelo(a) a ampliar sus temas de conversación, teniendo en cuenta estos lineamientos:

Idea: Construya temas de conversación desarrollando y ampliando actividades en las que participe el(a) niño(a) de manera cotidiana.

Primero fíjese en las cosas que ya hace el(a) infante, como cepillar sus dientes, bañarse, comer. Distinga aquellas partes de tales actividades que podrían convertirse en "conversaciones". Por ejemplo, una "caja o bolsa de conversación" con un cepillo de dientes, una taza y un peine previene la actividad con el(a) niño(a) justo antes de cepillarse los dientes por la mañana. Se pueden agregar artículos a la bolsa para ampliar el tema, incluyendo una loción de manos, bálsamo para labios, prendedores para el pelo. Durante los alimentos, una "conversación" puede establecerse intercambiando turnos para probar el jugo o la comida conforme se añada al plato del(a) niño(a). Trate de desarrollar una lista de actividades en las cuales estos breves encuentros conversacionales puedan incorporarse sin cambiar el programa del(a) niño(a). Piense en ellos como "temas" de conversación.

Idea: Amplíe la variedad de temas al fijarse en lo que le interesa al(a) infante sobre sus actividades u objetos favoritos que sostiene o manipula. En lugar de considerar siempre a estos como objetos "auto-estimulantes" que debieran desecharse o alejarse de su alcance, a veces resulta útil fijarse en las características del objeto que lo hacen atractivos para el(a) niño(a) y tratar de elaborar algo a partir de ellos.

Por ejemplo, un niño que conocemos, adora jugar con un vibrador. Podía recordar el lugar del vibrador donde quiera que era colocado en el edificio. Le gustaba colocar el vibrador en su oído o en su cuello, y tendía a retirarse de las interacciones mientras estaba ocupado jugando con su vibrador. Decidimos introducir otros objetos vibradores, para tratar de elaborar actividades por turnos a partir de ellos. Tuvimos cuidado en introducir los nuevos objetos en situaciones interactivas, no solitarias. Lo hicimos así porque sabíamos que si él empezaba a jugar a solas con ellos, podría negarse a compartirlos con sus compañeros de conversación.

Los temas de conversación que se desarrollaron a partir de su preferencia, incluyeron:

  • Masaje de pies con baño, en el que él y un compañero se turnaban para activar el baño con un apagador, secando los pies del otro y frotando los pies del otro.
  • Hacer jugo con un exprimidor eléctrico. Él y su compañero se turnaban para colocar las mitades de naranja sobre el exprimidor. Se dieron señales uno al otro al pasar el tazón de naranjas cuando su naranja estaba exprimida.
  • Jugar con una almohada vibradora y un apagador con un reloj. Un compañero sostenía la almohada mientras el otro la encendía o apagaba con el apagador.

El vibrador original nunca se convirtió en un "tema de conversación" debido a que él únicamente lo utilizó para jugar sólo y no estaba dispuesto a compartirlo con otros. Sin embargo, al fijarnos en el interés de su hijo en la vibración, fuimos capaces de establecer cuatro temas interactivos de "conversación". Resultó importante para él distinguir entre actividades interactivas y solitarias, porque cualquiera de estas actividades podría haberse convertido en una actividad solitaria en lugar de una de conversación.

Idea: Proporcione un formato para desplegar o hacer el vocabulario concreto y accesible.

Para los niños que comprenden símbolos de objeto, despliegue los objetos sobre tableros o cuélguelos sobre la puerta del(a) niño(a) en bolsas o cajas de zapatos, para que él o ella pueda tomarlos. Los niños que entienden símbolos de imágenes tactiles, pueden utilizar tableros o libros que niños y adultos usan para desarrollar conversaciones. Organice tales muestras por categorías (gente, lugares, objetos, acciones), o por actividad.

Idea: Asocie gente, lugares, acciones, momentos y objetos específicos con rutinas familiares para ayudarlo(a) a enriquecer su concepto de un tema en particular para desarrollar más la utilización del lenguaje formal.

El lenguaje se acrecienta a partir del conocimiento no verbal de los niños sobre objetos, gente, lugares acciones, momentos y sentimientos. Todos los niños tienen que desarrollar sistemas de organización para salir del caos de "experiencias" azarosas y para encontrarles significado. Sin alguna manera de etiquetar a la experiencia, es imposible compartirla con alguien más. Nosotros organizamos estas experiencias de diferentes maneras, al hacer categorías para ordenarlas: cosas, acciones, gente, etc., lo que nos ayuda a retener y recordar tales experiencias. Estas categorías nos ayudan a interpretar nuevas experiencias y a ampliar nuestro conocimiento. Por ejemplo, asociamos las acciones de empujar un carrito, caminar por los pasillos llenos de comestibles y seleccionar la comida, con una tienda de provisiones. No asociamos acariciar a un perro o montar una motocicleta con este lugar. Las acciones asociadas con la experiencia de la tienda de comestibles definen el concepto para nosotros aunque haya muchos tipos de dichas tiendas a las que acudimos.

Es importante resaltar aspectos específicos de una actividad aunque todavía no utilicemos palabras o signos para describirlas. Esto ayudará al(a) niño(a) a desarrollar tales "categorías" en las que podrá almacenarse sus experiencias. Más adelante, cuando se introduzca el lenguaje, el(a) niño(a) tendrá la estructura conceptual necesaria para comprender el signo o la palabra hablada. El ejemplo en la Tabla 1 muestra conceptos o vocabulario tempranos que podrían destacarse en dos temas de conversación diferentes que fueron centro de atención de la interacción entre Tabor y el Dr. van Dijk.

Problema 4: El(a) niño(a) tiene pocos compañeros para conversar.

Los niños con sordoceguera se comunican con frecuencia solamente con un número limitado de compañeros. Frecuentemente vemos que el(a) niño(a) establece y desarrolla relaciones de confianza lentamente. Sus conversaciones dependen muy seguido del contexto -sólo pocas personas saben cómo mantener el curso de una interacción con ellos, y solamente algunas de ellas pueden entender las señales del(a) niño(a) o "señales hechas en casa."

Idea: Exponga al(a) niño(a) a una variedad más amplia de personas al ofrecerle interacciones guiadas con compañeros y con otros que no estén familiarizados con su estilo específico de conversar.

Debido a sus sistemas de comunicación únicos, los niños con sordoceguera están involucrados la mayoría de las veces en interacciones uno-a-uno con sus padres o con otros adultos, y pudiera ser que no tuvieran muchas oportunidades de establecer interacciones con sus compañeros. Es importante proporcionarles interacciones guiadas con otros para apoyarlos en su intento de hacer amistad con personas sordoinvidentes.

Podría resultar útil observar las interacciones naturales que ocurren con sus condiscípulos, hermanos y hermanas, y utilizar tales interacciones como formas de conversación, en lugar de tratar de capacitar a los compañeros en el uso de formas seleccionadas por el(a) maestro(a). Los niños pueden establecer formas personales de comunicación e interacción si no interferimos con el proceso. Sin embargo, deberíamos estar dispuestos a guiar las interacciones cuando sea necesario y a demostrar formas no verbales para comunicarse.

Cuando nos comunicamos con actividades, los condiscípulos y compañeros de trabajo podrían necesitar ayuda para aprender a utilizar señales tactiles, para jugar juegos no verbales ("el juego del 5", "gatos en el tejado", etc.), y para responder a las señales de los niños. Cuando nos comunicamos sobre eventos que no son del presente, a veces encontramos que la gente nueva se siente más confortable al comunicarse si tienen un libro de comunicación con imágenes concretas o con símbolos que representen actividades importantes (cuarto de baño, un carro, comer).

CONCLUSIÓN

Aunque el Dr. van Dijk describió a la conversación como "la meta" para el(a) niño(a) sordoinvidente, pienso que también estaría de acuerdo en que los tipos de conversaciones no verbales que hemos descrito sirven asimismo como base para aprender el lenguaje y otras habilidades. Conforme los niños pasen mayor tiempo interactuando con otras personas, tendrán, como es natural, más oportunidades para aprender de ellas. Si la conversación y la interacción son prioritarias, el(a) niño(a) tendrá más oportunidades para aprender nuevas palabras, signos, símbolos y/o habilidades funcionales para la vida. Espero haberles ofrecido algunas ideas de cómo mejorar las conversaciones con niños que son sordoinvidentes. Para resumir:

  1. establezca oportunidades y situaciones en que puedan ocurrir conversaciones;
  2. enseñe estructura de conversación (cómo iniciar conversaciones, cómo sostenerlas, terminarlas o cambiar de tema
  3. amplíe temas al hacer el mundo más interesante y accessible;
  4. proporcione más y diferentes compañeros; y
  5. siga la iniciativa del(a) niño(a) y sus intereses para involucrarlo en la conversación

Poseer mejores habilidades de conversación puede derivar en mejores habilidades de comunicación general que son fundamentales para incrementar la calidad de vida para las personas con sordoceguera.

LECTURAS Y RECURSOS:

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

MacDonald, J. y 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. y 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.


Tabla 1 - Ampliación de un tema para un(a) niño(a) con lenguaje limitado, basado en dos ejemplos de interacciones de conversación entre Tabor y el Dr. van Dijk, como se describe en: "Conversaciones sin Lenguaje: Cómo Establecer Interacciones de Calidad con Niños Sordo-invidentes " de Linda Hagood, Outreach TSBVI.

TEMA Y ACTIVIDAD: CALCETINES

La mamá de Tabor y el Dr. van Dijk empezaron por ofrecerle a Tabor su calcetín favorito, permitiéndole inspeccionarlo como acostumbraba; depués le ofrecieron calcetines de otros tipos. Conforme avanzaba el juego, los calcetines podrían haberse presentado juntos para que él pudiera escoger, con un objeto en su interior, o amarrados juntos. Tabor anticipaba lo que vendría después en la actividad y colocaba "su" calcetín en el piso a su derecha para poder inspeccionar el calcetín que se le siendo ofrecía en seguida. Cuando se cansaba de la inspección del nuevo calcetín, lo aventaba y buscaba el "suyo".

CATEGORIZACIÓN DE VOCABULARIO

  • Objetos - (base para sustantivos)
  • Acciones - (base para verbos)
  • Lugares - (base para nombres de lugares, preposiciones, adverbios)
  • Gente - (base para los nombres de gente específica)

FORMAS NO-VERBALES PARA DESTACAR CONCEPTOS ESPECÍFICOS Y VOCABULARIO

Durante la interacción, el Dr. van Dijk expuso a Tabor a varios tipos de calcetines (tines, calcetines de bébe, de nylon). Este tipo de experiencia puede ayudar a Tabor a entender que la categoría "calcetines" incluye una variedad de objetos distintos que comparten ciertas características -son angostos y tienen una abertura superior.

A Tabor ahora le gusta encontrar calcetines, estirarlos, sostenerlos en sus manos y colocárselos en la boca. El número de acciones que él hace con calcetines puede ampliarse al mostrarle gradualmente cómo ponerse los calcetines, cómo poner cosas dentro de los calcetines, amarrar y desamarrar calcetines. Realizar estas acciones nuevas con los calcetines le ayudará a desarrollar de nuevo un concepto más rico de lo que es un "calcetín" y le proporcionará una base para aprender verbos.

Tabor primero descubrió que podía encontrar calcetines en un lugar específico, el montón de ropa para lavar. Amplíe su entendimiento de los lugares de los calcetines ayudándolo a encontrar calcetines en la secadora, en diferentes cajones del vestidor, en su habitación, etc. También demostró que tiene lugares específicos donde coloca los calcetines de acuerdo a si quiere jugar con él (en frente de sí mismo), o si quiere almacenarlos (los desecha al hacerlos a un lado sobre una pila).

Aunque el juego del calcetín de Tabor es a la fecha una actividad solitaria si no se resiste a "dejar participar a la gente", podría resultar agradable establecer algunas asociaciones entre juegos de calcetín específicos y gente en particular. Mamá siempre juega a ponerse los calcetines en la mano; papá siempre juega a esconder el dado en el calcetín.

TEMA Y ACTIVIDAD: CANCIONES

La mamá de Tabor y el Dr. van Dijk se turnaban para cantar al oído de Tabor. El Dr. van Dijk estaba a su izquierda y la mamá de Tabor a su derecha. Tabor demostró que se anticipaba a los turnos al sonreír y moverse hacia la siguiente persona durante las pausas. También mostró una preferencia hacia la voz de su mamá al cambiar por lo regular la orientación de su cuerpo hacia ella durante la actividad.

CATEGORIZACIÓN DE VOCABULARIO

  • Objetos - (base para sustantivos)
  • Cualidad - (base para adjetivos)
  • Gente - (base para los nombres de gente específica)
  • Tiempo - (base para conceptos temporales y adverbios)

FORMAS NO-VERBALES PARA DESTACAR CONCEPTOS ESPECÍFICOS Y VOCABULARIO

El Dr. van Dijk amplió el juego del sonido al inflar globos y cantar con ellos para cambiar el sonido de su voz. También pueden incorporarse otros objetos en la actividad del juego con sonido, como micrófonos o tubos.

El Dr. van Dijk y la mamá de Tabor cambiaron la frecuencia, la intensidad, el tono y la tonada de los cantos hacia Tabor. Esto parecía mantener el interés tanto de Tabor como de los adultos involucrados. También proporcionó una base para el desarrollo posterior de preferencias de Tabor y de su vocabulario relacionado con la cualidad del sonido.

Tabor demonstró aceptar a un nuevo compañero (el Dr. van Dijk) así como la preferencia por la voz de su mamá. Ésta podría haber sido una actividad que Tabor hubiera podido aprender a compartir más tarde con sus compañeros o con otros adultos y hacer asociaciones. Ed canta la canción de Popeye; mami canta la canción de Barbra Ann

La actividad podría presentarse de manera constante en un mismo momento de cada día, p. ej. siempre antes de irse a dormir o después del desayuno. Más tarde, al tratar de enseñarle palabras sobre conceptos como mañana o noche, él también podría asociar esta actividad concreta con aquellos conceptos temporales más abstractos representados en un sistema concreto de calendario.


from January 1995 edition of P. S. NEWS!!!

by Kate Moss, TSBVI Deaf-Blind Outreach Family Training Specialist and Linda Hagood, TSBVI Deaf-Blind Outreach Education Specialist

Children with deaf-blindness have unique educational needs. Although they are deaf the adaptations needed for their learning style will differ from the child who only has deafness. Although they are blind the adaptations needed for their learning style will differ from the child who only has blindness.

In order to understand what this means we can examine a variety of issues that might be addressed for three different children with disabilities in a regular preschool class: one born with a severe hearing loss, one born with visual impairment resulting in acuities of 20/600, and one born with a combined severe hearing loss and visual impairment resulting in acuities of 20/600.

It is important to note these are not actual children and that instruction for any child with a disability must accommodate his/her individual needs. Our intent is to demonstrate some of the basic differences in educational approaches to address each of these disabilities. It is also important to note that the additional disabilities experienced by the majority of children with deaf-blindness further complicates program development.

Imagine each child is in a preschool classroom structured around play centers such as the House Center, Art Center, Block Center, Library Center, and Science Center. There is a morning welcome, a story time, and films which occur in a large group. Small group activities are conducted around a theme or unit such as Families, Animals, etc. The play centers have materials which require some explanation or direction from an adult. For example, the teacher must demonstrate or have examples to help the children make animal puppets from socks. Recess occurs in a large group and the child may choose an area of recreational activity, i.e., swings, slide, tricycles, wagons, or the sandbox. All the children eat together in the cafeteria. Using the example of a unit on farm animals, we can look at the difference in teaching strategies and content modifications that might be made for each of these three children.

Teaching Strategies and Content Modifications

The Child with Hearing Impairment

Most of the same teaching strategies used to instruct children who do not have a disability would be appropriate for the child with a hearing impairment. This child will learn from what he sees and what he does (action). He learns a great deal incidentally by watching others. Instruction in a large group can be very beneficial for this child because he can prepare for his response while waiting for his turn.

Adaptations for teaching communication and auditory training goals include small group or individual instruction. Real experiences should be the basis of units that are taught, however this child would probably be able to relate story books, role play, and discussion to the real experience. The teacher may also rely on print, pictures, gestures, and movements to support or give instruction.

Issues for the child with hearing impairment include difficulty with English language structure which can effect the development of reading and critical thinking skills. Special attention should be given to teaching such structures as "why", past tense verbs, complex sentences, etc. He may also need additional practice in using language to explain and make predictions such as, "Why didn't the brick house fall down?" or "What will happen if you don't take a nap?"

The child with hearing impairment would probably have an experiential base about animals before he began to study the unit on farm animals. He might have a pet at home, has probably seen birds and squirrels in his yard, or has watched animal stories on television. He will understand stories about farm animals if it is signed and he can see the pictures. He might play with plastic farm animals and farm figures in the sandbox. He might color pictures of farm animals in the Art Center and sort zoo and farm animal figures in the Science Center. At recess he could pretend to be a horse that pulls a wagon outside. During auditory training he might try to discriminate between the sound a pig and a cow makes or point to the appropriate picture of each animal in the Old MacDonald song. Speech or speechreading might focus around the names of farm animals. At the end of the week his class may visit a working farm which would build on his week-long study of farm animals.

The Child with Visual Impairment

Some of the same instruction strategies could be used with the child who has a visual impairment. However, his learning will take place primarily through his own actions/experiences and information he receives auditorily. He can learn many things through group instruction with minimal support. Unlike the child with hearing impairment, this child will need more instruction that occurs through real experience. Imaginary play may be difficult for him, reducing the effectiveness of role play as an instructional tool. Language instruction for this child should be paired with ongoing activities. The use of pictures and print would be of limited value.

Using the example of a unit on farm animals, the child with visual impairments would likely have less knowledge of animals to begin with than the child who is deaf. He would not have seen the television programs or watched animals playing in his yard. He might have a pet and perhaps has some knowledge about caring for an animal. This unit may be most meaningful for him if the visit to the farm was scheduled before beginning classroom instruction.

Although he might be able to sort the animals in the Science Center using visual cues of color and shape, he may or may not relate them to the real animals. A more appropriate activity might be telling a classmate or teacher whether the animal lives in the zoo or on the farm after they name the animal or make the animal sound. Then he could put the animal in the proper area. Instead of coloring animal pictures he might use modeling clay to make an animal figure or scraps of fur to make tactile pictures. He could interact with other children in the wagon while working on the concepts of "left", "right", "fast", "slow", "stop" and "go" pretending to drive the horse. These concepts might be taught and practiced individually within orientation and mobility training. New textures can be introduced at the sandtable. Working on listening skills during story time may also be somewhat effective, especially after the child visited the farm. He could be encouraged to explore his environment to search out the sound of a mooing cow.

The Child with Deaf-Blindness

The child with deaf-blindness requires considerable modifications to teaching content and different teaching strategies. He cannot learn from what he sees like the deaf child does. He can not learn from listening like the blind child does. He learns only by what he does. This means that no learning is taking place for him while waiting for others to take their turn. For this reason small group or individual instruction becomes more critical. Large group instruction is only valuable if he can be consistently active (e.g. playground activities).

This child also may have problems experiencing new things. Encountering the world without benefit of vision and hearing requires a great deal of trust. Bonding with the child is critical for the instructor, therefore it is important to evaluate the child's response to an individual when determining who will be the primary provider of instruction. He may be withdrawn or passive, content to stay in one place and let the world come to him. Remember for him he will learn only through doing.

Things often magically appear and disappear before him. Cause and effect are elusive. People do things to him but not necessarily with him. There is little explanation of events before they occur. For this reason it is important to make interactions balanced (my turn, your turn) to encourage him to be responsive. Instruction that is always directive requires no response from him.

Safety is also of critical importance to this child. Not only must the environment be made safe for him, but he must feel safe in order to move around on his own. If he does not, he is likely to stay glued to one spot resisting interaction with his environment and the people in it. Instruction and support from an orientation and mobility specialist is very important. She may need to help staff evaluate the environment for hazards and develop travel routes for the child to use. She may work directly with him to orient him to that environment, and provide training on travel techniques and travel equipment.

The curriculum focus for the child with deaf-blindness will differ from that of the child with only a single sensory impairment. The deaf education focus may be primarily on using language to code existing concepts. The curriculum focus for a child with visual impairment may be more oriented toward building concepts and experiences which can provide a firm cognitive foundation for language. The curriculum focus for a child with deaf-blindness should be on bonding and developing interactions and routines for expanding the frequency and functions of communication. This child will not learn about objects or actions incidentally. He cannot tie together the fragmented input he receives without interpretation and instruction from others. He must be taught to use and accept this instruction.

Developing a communication foundation for learning is a priority. Typically communication is tactile in nature using signals, objects, gestures and later on sign language or tactile symbols or some combination of forms. Language is developed through the use of routines, calendar systems, discussion boxes, etc. Because of the degree of vision impairment and his inexperience with real events in the world, the use of print, pictures, and demonstration will be of little or no value to this child. He may not understand pretend or role-play as an event that relates to some real experience. The child with deaf-blindness may first need to be moved co-actively through an activity to know what is expected of him. After he understands what is expected, this support would be faded to avoid building prompt dependence.

Because concepts develop so slowly for this child, there should be a focus on making learning functional. Great care needs to be given to developing clear goals and objectives for this child. Typically these objectives need to be limited in number since this child will need many opportunities to practice skills before he is able to generalize the concept to other situations.

This child would have a very limited knowledge of animals because he can not observe them or hear them. He has not seen television shows about animals. He may have a pet at home, but might only encounter it if the pet is placed in his lap or brought to him. His experience with that animal would be primarily tactile. He may not be able to distinguish his long-hair cat from his long-hair dog if he only pets the animal. Or he may experience the animal as a thing that licks or smells a certain way.

For this reason vocabulary (concepts) which are taught should be more broad in nature. Careful consideration should be given to concepts which can be applied to other units throughout the year and across a variety of settings. For example, the farm animal unit might focus on action concepts such as feed, pat, rub, pull, walk, open, close, pour. These same concepts should be applied to other units or in different environments. For example, "pull the leaf", "pull the wagon", "pull the drawer", "pull off the lid" and so forth. This child may have a "pull" unit throughout the year that is embedded in the various units the other students will study. If this child has a pet at home, another approach to instruction could focus on things this child can learn to do with his pet. For example, he might learn to feed his pet, walk it, pet it, brush it, etc. Units could be developed around things that can be fed, walked, brushed, etc.

The child with deaf-blindness could meaningfully participate in the play centers but his goals would be different from the other children. For example, while the other children pretend to be animals, the child could "rub" or "pat" them as if he was the farmer they come to for attention. In the Art Center he could "pat" and "pull" modeling clay to help a classmate form an animal shape. At recess he could direct the other children to "pull" him in the wagon or practice pulling them with help from a classmate. The teacher for the hearing impaired or other staff could help him to learn to vocalize to get the other children's attention before he signs "stop" or "go". In the Science Center he could use his vision to find objects in the sandbox. Then he could "open" and "close" the door to the toy barn, "pour" sand on the toy animals, "pull" the shovel out of the sand, etc.

When he visits the farm with the other children he would experience the differing size, textures and smells of the animals, but his goal might be to use his cane or sighted-guide technique in unfamiliar environments. If field trips are regular events, he might also learn a field trip routine. Unless he actually lives on a farm, learning about the animals and what they do will be of little value to him even though it may be a very pleasurable event.

Obviously this child will require a great deal of individual support. Initially this may need to be provided by the teaching staff. However, if good interaction and communication skills are modeled for the other students and an effort is made to draw them into successful play situations together, they may be able to provide instructional support for some activities.

Conclusion

The educational needs of a child with deaf-blindness are unique. Teachers without specific training in the area of deaf-blindness may be unable to appropriately program to meet these needs without specialized training and support. Few school districts have even one teacher with this kind of specialized knowledge. In addressing the child's education from birth - 21 a large number of teachers and support staff as well as community members and human service staff must work with the child. However, if his unique learning style is not addressed, the child with deaf-blindness is at risk for being excluded from the classroom, the family and the community.

This article originally appeared in the January 1995 edition of P. S. NEWS!!! published by the Texas School for the Blind & Visually Impaired Deaf-Blind Project.

Kate Moss & Robbie Blaha

This document was developed in November 1993 by parents, educators, and human service representatives at a meeting in Lubbock, Texas on the use of Interveners for students with deaf-blindness sponsored by the Texas Deaf-Blind Project. The final revision was completed 12/94.

Individuals with deaf-blindness have unique life-long support needs that must be addressed in order for them to function in a world driven by sight and sound. Consistent with this, they have unique needs within the educational system. The information which follows outlines some of these needs and discusses existing services in Texas which impact quality education for students with deaf-blindness.

There are 532 school-age children widely distributed across the 1100 school districts in the state of Texas who meet the federal criteria for deaf-blindness. Because deaf-blindness is a low inci-dence disability, these students are generally unique among the population of students with developmental disabilities in a given geographical area. Most districts understandably build programs and hire staff to target the majority of children with disabilities in their particular area.

From the beginning, the school system often finds its resources in deaf-blindness to be inadequate. Assessing the skills of these children can be difficult since assessment instruments are generally not normed for this population. It is often impossible to adapt these materials to test children with deaf-blindness without negating the test's validity.

Another problem in assessing skills and providing instruction to children with deaf-blindness is the difficulty in engaging them and drawing them outside of themselves. The need to feel safe in a world that alternately "comes at you" or "disappears in thin air" often sends these children inside themselves. They may be unresponsive during testing unless they are working with someone with whom they have bonded.

Instruction for students with the single disability of visual impairments relies heavily on information received through auditory and tactile channels. For example, a child with visual impairments learns to associate a sound with the blurry, red, rectangle across the room to determine if it is a radio or the telephone. However, the child who also has a hearing loss can not use this technique to compensate for his vision problems. For this reason he has a greatly reduced ability to identify things or even be aware of things that are beyond arm's reach.

In contrast, instruction for a child with only a hearing impairment relies heavily on the use of his vision to compensate for his hearing deficit. Language development and instruction for hearing impaired students can include sign language, fingerspelling, speechreading, and/or spoken language. Most of this instruction is dependent on the child's ability to clearly see the hands that sign and the face that speaks. Even a child with mild visual impairments faces great difficulty in mastering and utilizing these skills.

The ability to orient and travel independently is deeply affected by deaf-blindness. For example, a student with the single disability of a vision impairment is trained to use his hearing to determine where he is or what area he is approaching (orienting). This technique may not necessarily be safe or effective if a child has even a mild hearing loss. Alternate ways must be developed to teach the child to use other environmental cues.

Without the enticement of sights and sounds, the child with deaf-blindness may also be less likely to explore and interact with the world around him. This has great impact on cognitive and social development as well as language development.

Generally children with deaf-blindness use a variety of adaptive assistive devices. Knowing how to use this equipment and how to keep it in working order is no small accomplishment. For example, a child may have both a personal hearing aid and an FM auditory trainer, glasses, a monocular, and a cane. They may need to use a vibrating alarm to wake up in the morning. They may rely on a communication book for much of their communication. The child and all of the people working with him have to be trained to use all these devices.

Throughout these children's lives, their eyes and ears either distort or altogether omit incoming information. They only experience fragments of any experience. Children with deaf-blindness have difficulty learning through observation or independent exploration. As a result, the child with deaf-blindness has an experiential and conceptual base that differs significantly from children with any other disability(ies). They must be given the opportunity to recoup information which has been consistently denied to them by their sensory losses. They will require additional time with carefully engineered "hands on" activities to access information that other children pick up incidentally.

Communication is one of the main areas which is critically affected by deaf-blindness and is usually the highest priority in their educational programming. These children's communication systems typically contain a variety of forms which can include signals, tactile sign language, object symbols, tactile symbol systems, Braille, as well as a variety of other options. Each child's system must be individually designed for him and used with a high degree of consistency across the day. Developing a communication system for these students frequently requires technical assistance for the staff since few have had preservice training regarding this population.

The constant stress and frustration these children experience often results in behavior that is either withdrawn and passive or volatile and aggressive. To address the underlying cause of these behaviors, one must have an understanding of the ongoing effects of sensory deprivation and an ability to modify the child's instruction to offset these effects.

Many children with deaf-blindness suffer additional disabilities. This further complicates the situation. Many of these children dislike being touched. They may have disrupted sleeping patterns, poor overall health, and /or feeding difficulties. They may have ongoing medical problems that escalate the degree of vision or hearing loss.

Children with deaf-blindness learn best when information is presented in a consistent and repetitive fashion. This places some additional burdens on the staff working with the child. Staff must work closely together to provide consistency and to coordinate support imperative in educating a child with deaf-blindness. Planning time as a group is critical. Additionally, information and input from the family is vital to a well coordinated program.

The staff who typically would serve a child with deaf-blindness include: teacher of the visually impaired, teacher of the hearing impaired, orientation and mobility instructor, general classroom teacher (regular education and special education) and instructional aide, behavior specialist, diagnostician, and often occupational and physical therapists as well as other related service staff such as a speech/ language therapist and audiologist. Often finding adequate time for the staff and the family to meet together, share information, and plan is quite difficult. This frequently results in communication breakdowns, not only between staff and family, but also between the various staff members. To further complicate a difficult situation, each year new staff may become involved with the child.

Educational staff seldom have specific training in the area of deaf-blindness. It is also rare to have a teacher certified or explicitly trained in the area of deaf-blindness within a local school district. There are currently no specialists in deaf-blindness at any of the twenty Education Service Centers. There is only one university program in Texas which is providing specific training in the area of deaf-blindness, producing approximately 4-6 graduates each year. There is no recognized certification or endorsement through Texas Education Agency in the area of deaf-blindness. Furthermore, there are few jobs being created specifically in the area of deaf-blindness. Consequently, the state's ability to utilize these graduates as well as recruit individuals trained in deaf-blindness from other states is greatly reduced.

Often districts can not meet the unique learning needs of a child with deaf-blindness without inservice training to make appropriate program modification. In order to design and provide the necessary modifications and supports, most school districts look to outside consultants on deaf-blindness to provide training to their staff through an inservice model. Some districts may contract with private consultants. However, most districts obtain support through Deaf-Blind Outreach from Texas School for the Blind and Visually Impaired. These consultants work as part of a technical assistance program funded by a Federal IDEA 307.11 grant on deaf-blindness.

Although children with deaf-blindness present unique challenges to those who are charged with providing them appropriate education, it is important to state that these children CAN LEARN. If these children and the educators working with them are given the proper supports, they can make terrific strides. It is important as Congress moves towards the reauthorization of the Individuals with Disabilities Education Act that these children with unique educational needs are not deprived of the funds which support their inclusion in the classroom and in the community.

by Robbie Blaha, Education Specialist and Kate Moss, Family Training Specialist - Texas Deaf-Blind Outreach

Students with deaf-blindness frequently require modifications regarding the delivery of instructional services. Without appropriate modifications, the child with deaf-blindness may be unable to access information from the instructional environment. These modifications are generated through the assessment process and are reflected in the reports submitted to the ARD committee. In a number of school districts around the state, the modification sheet is being used to summarize and document some of these specific modifications. We have developed a modification sheet which lists typical modifications for the student with deaf-blindness. We will be sharing this information with school sites around the state during the next year. We hope to get feedback on the effectiveness of its design and its value in facilitating better information about the student's need for the staff working with him/her.

The design of this form is based on the sample modification form developed by Texas Education Agency. Listing information on a single form serves a number of purposes:

  • It compiles and highlights sensory modifications that have been recommended in a variety of reports (e.g. the functional vision evaluation, the audiological, the technology assessment, the communication assessment, and the learning medium assessment). This is especially critical when various recommendations impact each other. For example, the speech pathologist recommends the child see the speaker's face to support speechreading, but the vision report indicates the child can not distinguish facial features at a distance greater than 12 inches.
  • It presents modifications for deaf-blindness which are not typically considered in other reports (e.g. tactile signing).
  • It helps eliminate the recurring problem of "I thought it was somewhere in the ARD notes" or "Since we did that last year, I just assumed they would continue it."

Many of the modifications we have included on the sheet are unique to deaf-blindness. Some of the modifications may be unfamiliar to staff who are not trained in the area of deaf-blindness. Modifications for students with deaf-blindness are not typically covered in preservice programs which train teachers of the visually impaired or teachers of the deaf or hard of hearing. The need for particular modifications is based upon a number of factors which include etiology, age of onset of the disabilities, degree and type of vision and hearing impairments, the presence of other disabling conditions, and most importantly the combined effects of the vision and hearing loss.

The modification sheet proposed by TEA has five sections and list specific modifications. The five sections included are: alter assignments, adapt instruction, adapt materials, manage behavior, and required equipment/assistive technology. Although many of the modifications listed might be needed for a student with deaf-blindness, many typical modifications for this population are not listed. Using these headings, we have included a list of modifications common to deaf-blindness. A sample form will be available soon. The information that follows gives more information about each of these modifications and why they might be needed.

Section 1 - ALTER ASSIGNMENTS

This first section of our form remains the same as the TEA form and does not require explanation. The modifications included under this section include:

  • Reduced assignments
  • Taped assignments
  • Extra time for completing assignments
  • Opportunity to respond orally
  • Emphasis on major points
  • Task analysis of assignments
  • Special projects in lieu of assignments

These modifications may be necessary modifications for some students with deaf-blindness.

Section 2 - ADAPT INSTRUCTION

Providing a high degree of consistency in presenting new information. A child with deaf-blindness receives fragments of any experience because their eyes and ears omit or distort incoming information. When presenting new information staff must provide information in a consistent way so that the child can more readily grasp the information being taught. For example, when learning new signs tactually or through coactive signing, some children are confused by the variation in the way three different staff members form the same sign. The child may take longer to learn the sign or be unable to learn signs at all because of this variation. The number of people using new vocabulary with the child needs to be limited at first to insure a greater degree of consistency.

Providing experience-based instruction to supplement or introduce group instruction. Children with deaf-blindness have difficulty learning through observation or independent exploration. This results in an experiential and conceptual base that differs significantly from children with any other disability (ies). They must be given the opportunity to recoup information which has been consistently denied to them by their sensory losses. Current thought suggests that this type of educational approach is beneficial to all learners. However, for the child with deaf-blindness this may be the only approach that proves effective.

Providing additional time to locate & attend to referent. Because of their hearing loss a child with deaf-blindness may have difficulty localizing sounds, identifying speakers, etc. The same child's visual impairment creates difficulty when focusing with a change in distance, lighting, or background. If his visual fields are constricted or broken, locating something visually becomes much more complicated. The child with deaf-blindness must have extra time to shift his gaze from the teacher who asks the questions to the student who responds. In other instances, the student may need to have additional time to locate the object or situation under discussion so they can understand the comments.

Providing frequent comprehension checks. You cannot assume the child with deaf-blindness is getting the information at the same rate and in the same manner as the other students. It is critical to check frequently during instruction for comprehension.

Providing one-on-one instructional support. Some children with deaf-blindness have a current need for one-on-one support for all or part of the day in order to benefit from instruction. This may be necessary because the child's vision or hearing limits his ability to access the learning environment independently. This need may exist in one situation, but not in others. For example, some children with deaf-blindness only need one-on-one support in group situations to be able to keep track of the discussion or demonstration, to participate in a hands-on experience, or to interact with their peers. Depending on the child and the activity, a one-to-one ratio can be provided by a variety of people (e.g., peer, teacher of the visually impaired, the third-grade teacher).

Providing intervenor aide. An intervenor is an instructional aide who has specific training in deaf-blindness. Her training would include the information needed to implement the IEP objectives and individual modifications for a child with deaf-blindness. Intervenors are specifically designated to work with a child with deaf-blindness for all or part of the instructional day based on the current need of the child.

Providing an interpreter and/or modifying interpreting services: individual, small group, platform, visual description, and/or oral interpretation. Depending on the degree and type of visual and hearing impairment, the specific situation, and the communication form used by the child, different types of interpreting services may be required. For example, a student with slightly restricted fields and good acuities may be able to use a platform interpreter, or he may require small group interpretation. A child with severely restricted fields and 20/200 vision may need individual interpreting services, visual descriptions, and in some situations sighted guide assistance. A child who relies on speechreading may require the support of an oral interpreter. It is important to consider the type of interpreter support needed to accommodate the child's visual abilities and communication form.

Providing interpreter-tutor aide. An interpreter-tutor differs from an interpreter in that they not only provide direct interpretation, but also provides additional explanation and instruction when it is needed. Some students with needs in developing language, vocabulary and concepts may require this type of support.

Adapting manual communication form by: substituting fingerspelling or alternative signs, tactual signs, (hand) tracking, or coactive signing. There are a variety of manual communication forms used by students with deaf-blindness. Adaptations to these communicative forms are based on the child's cognitive, motoric and visual abilities. Some of these adaptations are specific to deaf-blindness:

  • tactual signs allows the person with deaf-blindness to receive information by placing his/her hands on the signer in order to read signs and fingerspelling by touch.
  • (hand)tracking occurs when the person with deaf-blindness places his/her hand(s) on the wrist area of the signer. This helps him direct his gaze and may provide additional information about a specific sign.
  • coactive signing occurs when the teacher takes the student's hand(s) and helps the student form the sign correctly.

Presenting signs and fingerspelling in appropriate field as noted in functional vision evaluation. Many children have visual impairments which may cause some type of field loss. It is critical to present visual information to them in a location where they can see it most readily. Some signs may need to be adapted to a smaller sign space. This technique could be used in conjunction with the adaptations to manual forms mentioned above. The functional vision evaluation should note any field losses that the child is experiencing.

Altering signing distance as noted in functional vision evaluation. When a child has an acuity problem or a field loss, signing distance is affected. Some children may require signs to be presented within 12 inches of their face to be able to see them. Other children who have restricted field loss with no acuity problems may occasionally need to have the signer at a greater distance from them than may be typical in some situations in order to get the hand and body movements inside of their field of vision.

Varying rate of signing and fingerspelling when presenting complex or novel information. Visual impairments may cause problems in receptive communication, especially if the information is new to the child. The child may not be able to keep up with the rate of signing or fingerspelling used for other students in their class.

Providing specific visual adaptations to instructional environment. The functional vision evaluation, the eye exam, the clinical low vision assessment and the learning media assessment contain pertinent recommendations which should be highlighted on the modification sheet. These might include such things as: allowing child to use eccentric viewing positions, providing additional lighting, etc. (Some recommendations may also be reflected in Section 3 - Adapt Materials and Section 5 - Required Equipment/Assistive Technology.)

Providing specific auditory adaptations to instructional environment. The audiological, the communication assessment, and in some instances the technology evaluations may contain specific recommendations for adaptations and equipment needed by the child. These might include: assistive listening devices, preferential seating placement, reduction of ambient noise, notetaker, etc. (Some recommendations may also be reflected in Section 5 - Required Equipment/Assistive Technology.)

Adapting braille instruction to match child's English language skills. Some children with deaf-blindness are fluent in American Sign Language, which is a different language from English. Since braille instruction is based on materials that are in English, the staff need to be sure that the vocabulary and language which are used in instructing braille are appropriate for the student.

Section 3 - ADAPT MATERIALS

The sensory assessments suggest specific modifications to materials. Some examples are: enhance contrast, provide specific print size, use toys that produce low frequency sound, etc.

Section 4 - MANAGE BEHAVIOR

Providing supervision regarding the use & maintenance of assistive listening devices and optical aids. A common complaint from parents and teachers alike is that children with deaf-blindness are not using hearing aids and glasses that are recommended for them. Since these devices allow the child to access information, it is critical that someone is responsible for keeping these devices on the child as well as in good working order. It is also necessary that the child be taught to use the additional information they are receiving as a result of the devices.

Preparing the child prior to transition to new activity by: giving a clear ending to the current activity, giving a symbol representing the upcoming event, and/or discussing the upcoming event. Many children become upset when they transition from one activity to another, especially if they are engaged in a preferred activity. Using routines that are structured to give the child a clear signal for the end of one activity and the beginning of the next activity can be very helpful. Calendar systems often help in this effort. Many children only need some discussion of the activity that is coming up to ready them for the transition.

Reducing the effects of anxiety related to deaf-blindness by: limiting the number of people; providing a predictable environment; reducing performance demands; developing instruction around preferred activities; and/or providing choices in activities. Some children with deaf-blindness have difficulty feeling safe in a world that alternately "comes at you" or "disappears in thin air." Their communication skills may also make it difficult for them to express their feelings and desires readily to all the individuals they encounter. The items listed above may offset these problems.

In general, finding ways to make the environment more predictable can help reduce anxiety. It is also important that these children have some control in their lives.

Section 5 - REQUIRED EQUIPMENT / ASSISTIVE TECHNOLOGY

Children with deaf-blindness need to have access to a variety of adaptive/assistive devices. Many of these are listed below:

  • personal hearing aids and glasses
  • low vision devices such as CCTV, monoculars
  • easel, book stands
  • assistive listening device such as FM systems, vibrotactile aids, or auditory loops
  • alerting devices such as vibrating alarms
  • captioning for television and video materials
  • computer aided real time (CART)
  • lamps or spotlights on interpreter to help the child in visually accessing the information that is being signed
  • TDD/telebraille devices for making phone calls
  • calendar system for specific communication needs and structuring of the daily, weekly or monthly activities
  • relay services

You may need to reference other materials to help in determining the most appropriate modifications for the student in your classroom. Some of the materials that we feel would be helpful are listed below. You may also call with questions regarding modifications.

OTHER READINGS AND REFERENCES

Baker, Charlotte & Cokely, Dennis (1988). American Sign Language: a teacher's resource text on grammar and culture. Silver Springs, MD: T.J. Publishers.

Gustason, Gerilee & Zawolkow, Ester (1993). Signing Exact English. Los Alamitos, CA: Modern Signs Press, Inc.

Humphries, Tom, Padden, Carol, & O'Rourke, Terrence J. (1980). A Basic Course In American Sign Language. Silver springs, MD: T.J. Publishers.

Reed, Charlotte M., Delhome, Lorraine A., & Durlach, Nathaniel I. (1995). A study of tactual reception of sign language. Journal of Speech and Hearing Research, Vol. 38, 477-489, April 1995.

Smith, Theresa (1992). Guidelines for working/playing with deaf-blind people. Monmouth, OR: D-B LINK.

Watkins, Susan & Clark, Thomas P. (1991). A coactive sign system for children who are dual sensory impaired. American Annals of the Deaf, Vol. 136, No. 4, pages 321-324.

from Spring 97 issue

Breakdown by Age* and Gender

Age Male Female Total
0-2 36 (5%) 38 (5%) 74 (10%)
3-5 45 (6%) 56 (8%) 101(14%)
6-11 149 (21%) 112 (16%) 261 (37%)
12-17 136 (19%) 73 (10%) 209 (29%)
18-21 38 (5%) 37 (5%) 75 (10%)
22 0 (0%) 0 (0%) 0 (0%)
*Age as of December 1, 1996

Breakdown by Education Service Center Region

ESC Region Federal Projections: Number of
students with Deafblindness
1997 1996 1995
1 48-72 42 46 38
2 24-36 25 24 25
3 14-21 11 9 8
4 152-228 101 88 76
5 22-23 5 4 4
6 28-42 14 14 14
7 40-60 57 48 46
8 14-21 23 21 19
9 14-21 11 11 8
10 102-153 42 39 31
11 78-117 67 49 51
12 28-42 41 38 30
13 54-81 47 44 40
14 16-24 9 12 12
15 14-21 76 78 73
16 18-27 18 18 16
17 22-33 30 33 31
18 18-27 21 16 15
19 24-36 32 30 25
20 76-114 48 42 38
Total Students 720 664 600

from Spring 97 issue

by Kate Moss, Family Support Specialist, TSBVI Deafblind Outreach

The 1997 Deafblind Census has just been completed in Texas and the information sent on to Dr. Vic Baldwin at NTAC for compilation in the Federal Deafblind Census. Dr. Roseanna Davidson and her staff at Project Access (located at Texas Tech University in Lubbock) compile this information each year.

The information that is provided through the census is always very helpful to us here at Deafblind Outreach. For example, the 1995 and 1996 Texas census showed an amazingly low number of school-aged children with Usher Syndrome. On the 1995-96 count there were 4,830 children labeled as deaf or hearing impaired in the state of Texas (CADS, 1996). Comparing the deafblind census numbers to statistics that suggest that "3-6% of all deaf children and perhaps an equal number of hard-of-hearing children have Usher Syndrome" (Davenport, 1996), we can project that there should be approximately 145-290 children with Usher Syndrome in Texas. We had only identified 15 of these children in 1996 and only 19 on the 1997 deafblind census. This has led us to focus more of our training efforts on the topic of Usher Syndrome.

The information provided by Project Access will also be a great help to the Education Service Centers, teachers of the visually impaired, teachers of the deaf and hearing impaired, local school districts, Early Childhood Intervention programs, and others. We hope that they will use this information when they develop Regional Plans, inservice programs for staff, and think about future funding issues. Hopefully, adult human service providers will also be able to use this information to make sure there are enough resources in various parts of the state for each of these individuals when they leave the educational system.

Sometimes parents don't understand why their child is on the Texas Deafblind Census when they are not coded auditorily impaired or visually impaired for state purposes. The reason this might occur is because the Federal definition for deafblindness recognizes that even mild vision and hearing losses in combination are significant in the child's educational progress. Programs for the child with primarily visual impairments or deafness have eligibility based on more significant vision and hearing loss. Typically the children who have more minor, singular sensory losses will not need the type of specialized programming provided by a vision teacher or a teacher of the deaf and hearing impaired.

There is a variety of information that is collected on the census form for each child. The major sections of the census form are:

" Identifying information for eligible child or youth which includes their name, date of birth, gender, school district, campus, region, parents name, address, and telephone number.

" Etiology (major cause of sensory impairment) which includes information on syndromes, congenital anomalies, prematurity, congenital infections, postnatal causes, or other causes of sensory impairments.

" Degree of loss for vision and hearing and a listing of additional disabilities.

" Funding source and handicapping condition which includes information on where specific disability funds for the child are generated.

" Instructional and living arrangements for the child.

The first step in filling out the census is to complete the Checklist for Deafblind Census of Texas. This checklist includes three areas: Hearing, Vision and Developmental Concerns that would lead to coding the child deafblind for the Census. 

Under the "Hearing" and "Vision" section of this checklist there are two subsections. One subsection (items #1-6) addresses documented vision or hearing impairments. By "documented" we mean visual or auditory conditions that have been diagnosed by a professional in the field of vision or hearing (an audiologist, ophthalmologist, speech/language pathologist, etc.).

The other subsection is the "At risk" items (#7-11 under the hearing and #7-13 under the vision). Frequently children with these "at risk" issues may be untested or have nonclusive testing initially. This may occur because the child has been too ill to test or to get good test results or because the concerns are so recent that testing could not be scheduled before the census form had to be submitted. Additionally , in very young children, under the age of 5 years old, it sometimes takes a long time to get good testing results. The best that can be done, for the time being, is for the vision and hearing professionals to make a judgement call based on the best information they can obtain.

Another of the other trends we see in Texas when we look at the census figures is that many children are listed as having incomplete or nonconclusive testing done in the areas of vision and hearing loss year after year. One of our goals is to improve assessment in these areas.

Every effort should be made to get appropriate testing results as soon as possible for a child at risk for hearing or vision loss. Without this information, appropriate programming may not be provided to the child. If you don't know how the child uses his vision or hearing, how can you be sure he is getting anything out of his instruction? You also don't want to overlook possible adaptations that could help the child or make adaptations that could be detrimental to the child.

The Deafblind Outreach staff are very interested in reducing the number of children on the census who have "Tested - Inconclusive Results" or "Not Tested" checked under the vision and hearing loss data. We are currently compiling a packet of information to help schools achieve better testing results in hearing and vision areas on the hard-to-test child. We are also available to work with schools to help them obtain better testing results and information.

Go to 1997 Texas Deafblind Census

References:

Davenport, S. 1996. Usher syndrome. NIDCD HHIRR, Omaha, NE.
http://www.boystown.org

Deafblind Census of Texas: Results 1997, April 1997. Project Access, Texas Tech University, Lubbock, TX.

1995-1996 Final Report Texas State Survey Deaf and hard of Hearing Students, August 1996. Center for Assessment & Demographic Studies, Gallaudet Research Institute, Gallaudet University, Washington , D.C.

from Spring 97 issue

To be considered as deafblind for the purposes of being included in the Federal census and receiving services from Deafblind Outreach, a child (birth to 21) would have to meet at least one condition in each of the three areas (Hearing, Vision, Developmental Concerns). CIRCLE ALL APPLICABLE

Suggested uses for this CHECKLIST
1) To evaluate each of the students in special education
2) To present to parents as a tool to help develop an understanding of their child's needs for program modification because of sensory deficits.
3) To keep in child's records.


Hearing

(* examples/definitions at end of this section)

1. Documented auditory handicap meeting Texas eligibility requirements as cited in the commissioner's/SBOE rules

or

*2. Documented unilateral hearing impairment (conductive, sensorineural or mixed) of at least 15 dB

or

*3. Documented bilateral hearing impairment (conductive, sensorineural or mixed) of at least 15 dB

or

*4. Documented syndrome, disease or disorder associated with hearing loss

or

*5. Documented syndrome/disorder associated with a progressive hearing loss

or

*6. Diagnosis of a central auditory processing disorder (CAPD) by a speech/language pathologist and an audiologist. A psychologist or diagnostician may also participate in the diagnosis

or

At Risk

*7. Documented chronic/persistent otitis media

or

8. Caregivers/professionals who know the child suspect impaired hearing based on the following:

a) significant and otherwise unanticipated delay in receptive and/or expressive speech-language skills
b) responses to full range of auditory stimuli in the environment is less than anticipated

or

*9. Ototoxic medications

or

10. Prematurity

or

*11. Balance problems


*EXAMPLES for Hearing

2/3. A conductive hearing loss is caused by problems in the outer ear or middle ear (e.g.) blockage of the car canal, damage to the ear drum, problems with the bones in the middle ear, fluid in the middle ear.

A sensorineural hearing loss is caused by nerve damage to the inner ear.

A mixed hearing loss is a combination of conductive and sensorineural impairments.

4. List of syndromes/diseases causing hearing loss:

  • Bacterial meningitis
  • CMV

5. List of syndromes/diseases causing progressive losses:

  • CMV
  • Norrie Syndrome
  • Goldinhar Syndrome
  • Hurler Syndrome

6. Reports from professionals may include such terms or descriptions as:

  • central auditory processing problem
  • central auditory processing dysfunction
  • difficulty in understanding what is heard

7. Otitis media/middle ear infection when chronic (lasting longer than 3 weeks) and recurring can inhibit language/communication development.

9. Some common ototoxic substances:

  • antibiotics: tetracycline, streptomycin
  • anticancer drugs: methotrexate, aminopterin

11. Some balance problems may be caused by structural damage to the inner ear which may also result in hearing loss.


Vision

(* examples/definitions at end of this section)

1. Documented visual handicap meeting Texas eligibility requirements as cited in the commissioner's/SBOE rules

or

2. Documented monocular vision (vision in one eye)

or

*3. Documented syndrome, disease or disorder associated with vision loss

or

*4. Documented syndrome/disorder associated with a progressive vision loss

or

*5. Diagnosis of cortical visual impairment from an ophthalmologist and/or neurologist

or

6. Documented visual impairment of 20/70 or worse after correction in better eye or a loss in visual field

or

At Risk

*7. Diagnosis of nystagmus

or

*8. Diagnosis of untreated amblyopia after the age of 6 years

or

*9. History of untreated eye condition, such as cataracts, during the first three years of life

or

*10. Visual perceptual problems

or

*11. Impaired visual-motor functioning resulting from strabismus or cerebral palsy

or

12. Prematurity

or

13. Caregivers/professionals who know the child suspect visual impairments because visual attending and/or visual examining behaviors are less than anticipated

Examples for Vision

3. Some examples of syndromes or disorders associated with loss of vision include:

  • Congenital cataracts
  • Retinopathy of Prematurity
  • Retinal Blastomas
  • Noonan Syndrome
  • Morquio Syndrome
  • Marfan Syndrome

4. Some examples of disorders associated with progressive or fluctuating vision loss include:

  • Retinitis Pigmentosa
  • Usher Syndrome
  • Glaucoma

5. Cortical visual impairment results in difficulties in processing visual information.

7. Nystagmus is an involuntary rapid movement of the eye.

8. Amblyopia is uncorrectable blurred vision due to disuse of the eye.

9. Cataracts are a clouding of the lens of the eye.

10. Examples of visual perception problems:

  • Child may be observed to overreach or underreach for objects
  • Child may misjudge where the food is on a plate
  • Child may be confused by color or texture of walking surface

11. Strabismus is a deviation of the eyes so they are not simultaneously directed to the same object.


Developmental Concerns

1. At least one year delay on developmental assessments or one standard deviation from score expected on the basis of chronological age on standardized assessments in one or more of the following areas:

  • communication skills (including speech and language)
  • social skills
  • spatial awareness and orientation
  • basic concepts
  • academic achievement
  • visual and/or auditory guided movement
  • self-help

or

2. At risk for problems with independent living and/or competitive employment upon graduation from high school

or

3. At risk for problems with integration into family life/community activities

or

4. At risk of getting hurt when walking/moving around independently

or

5. Under the age of 5 years