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Go to Fall 1998 Table of Contents.
Versión Español de este artículo (Spanish Version)

By Kate Moss, Family Support Specialist, TSBVI, Deafblind Outreach

For a long time now, families have contacted me about wanting to connect with other families. I've heard from many parents who want to talk with another parent whose child has a particular syndrome or condition. Perhaps their son or daughter wants to have a pen pal or they are grandparents wanting to meet other grandparents. Workshops and family retreats are great places for these connections to be made. I also know that some of the SEE/HEAR readers have connected through articles in the newsletter. The new TSBVI Family Discussion Room provides one more option for making connections.

More and more families are getting Internet access at home, at work, or at school. Some folks are even using their public libraries to "surf the net." Many students who are visually impaired or deafblind are learning the computer skills they need to access this new resource in school. So, we decided to add a new space on the TSBVI website for family members to connect with each other. This is an electronic bulletin board, not a chat room. That means that you can post messages for other people to read, and they can respond to you if they like. If you want to have a more direct conversation you can exchange your email address with them for private conversations at a later time. Eventually, if this service is popular, we may have additional boards for specific groups. Some that have been proposed by parents include a board for Usher Syndrome, Leber's Congenital Amaurosis, Siblings, and Teens with Visual Impairments or Deafblindness. We are open to your ideas and suggestions. Let us hear from you.

The Family Discussion Room should be up and running by December, 1998, just in time for the Christmas holidays. Please drop in for a visit and post a message. Simple go to the TSBVI website at <www.tsbvi.edu>, click on "Family Discussion Room", and follow the directions.

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See Hear Newsletter  Banner

Go to Fall 1998 Table of Contents.
Versión Español de este artículo (Spanish Version)

 

Reprinted with permission

Our-Kids is a "Family" of parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. We call the list "Our-Kids". While it isn't exactly descriptive, it avoids the pitfalls of labeling our kids anything but what they most certainly are: The wonderful little people in our lives.

The Our-Kids list consists of over 800 people representing children of varying diagnoses; everything from indefinite developmental delays and sensory integration problems, to cerebral palsy, to rare genetic disorders. Over 35 countries are represented on the list now.

Here we can discuss our children's accomplishments and defeats, knowing that the audience includes others who know what we are going through. We can also get some idea of how others address specific problems/concerns with feeding, learning, schools, medical resources, techniques and equipment, as well as describing the problems to friends and family or just coping. A few professionals, organizations and therapists also monitor and contribute to the list. This list is not for the canvassing of any particular religious or political ideals nor is it a forum to debate for/against abortion or euthanasia. In fact, the list is not for debate whatsoever. The sole purpose of this list is for support and information for ourselves and our kids.

My name is Randy, and I represent my son Sean, who is 6 years old and has severe cerebral palsy, spastic-quad, as a result of severe muconium aspiration. Sean is non-verbal and non-ambulatory. He is very aware though, has a great laugh, and a horrible grump which he has artfully mastered to effectively manipulate his daddy. The originator of this list is Ashley, who formed this list in January 1993 on behalf of her son Austin, who has Angleman Syndrome, on the basis of chromosomal testing.

Some of the kids represented on this list have more severe problems than ours, while others do not. Some are further ahead in capability and age, while others are not. But all of us and our kids have all benefited in the areas of support and knowledge thanks to the wonderful participants of this list. Please join us.

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Reprinted with permission

Our-Kids is a "Family" of parents, caregivers and others who are working with children with physical and/or mental disabilities and delays. We call the list "Our-Kids". While it isn't exactly descriptive, it avoids the pitfalls of labeling our kids anything but what they most certainly are: The wonderful little people in our lives.

The Our-Kids list consists of over 800 people representing children of varying diagnoses; everything from indefinite developmental delays and sensory integration problems, to cerebral palsy, to rare genetic disorders. Over 35 countries are represented on the list now.

Here we can discuss our children's accomplishments and defeats, knowing that the audience includes others who know what we are going through. We can also get some idea of how others address specific problems/concerns with feeding, learning, schools, medical resources, techniques and equipment, as well as describing the problems to friends and family or just coping. A few professionals, organizations and therapists also monitor and contribute to the list. This list is not for the canvassing of any particular religious or political ideals nor is it a forum to debate for/against abortion or euthanasia. In fact, the list is not for debate whatsoever. The sole purpose of this list is for support and information for ourselves and our kids.

My name is Randy, and I represent my son Sean, who is 6 years old and has severe cerebral palsy, spastic-quad, as a result of severe muconium aspiration. Sean is non-verbal and non-ambulatory. He is very aware though, has a great laugh, and a horrible grump which he has artfully mastered to effectively manipulate his daddy. The originator of this list is Ashley, who formed this list in January 1993 on behalf of her son Austin, who has Angleman Syndrome, on the basis of chromosomal testing.

Some of the kids represented on this list have more severe problems than ours, while others do not. Some are further ahead in capability and age, while others are not. But all of us and our kids have all benefited in the areas of support and knowledge thanks to the wonderful participants of this list. Please join us.

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Verano 2000 Tabula de Contenido
English version of this article (Versión Inglesa)

Por Alison Rickerl, Madre, Houston, TX

No mas tanques del oxigeno, de oxymetros del pulso, y de medicaciones por tubo. No mas "standers" y sillones de ruedas y de AFO's. No más tratamientos "nebulizer", no más limpieza del vomito de la alfombra. No mas emergencias en la noche, hospitalizaciones, tubos, alambres, y jeringas. Relevación bendecida... No más abrazos ni besos. No mas sonrisas torcidas. No más encantadores meneos del cuerpo entero. No más jugueteando en el suelo. Pena desgraciada....

Mi hijo murió. Algunos dicen que no hay mayor dolor que perder a un niño. Estoy segura que otros sienten ese dolor tan fuerte como yo. Ben tocó a mucha gente muy profundamente. Ese dolor no lastimaría tanto si el amor no fuese tan profundo. No hay mayor amor que el de un padre hacia su hijo.

Benjamin tenia solamente tres años de edad cuando murió. En tres anos cortos, Ben hizo frente a mas problemas medicos que la mayoría de la gente hace en 75 anos de sus vidas. Sus discapacidades e impedimentos de la salud no han sido conducentes a una forma de vida "normal". La vida ha sido difícil para todos nosotros estos últimos tres anos- pero no negociaría un segundo de ella. Ben era un regalo increíble del amor, y estoy agradecida por el tiempo que pude compartir.

Hace muchos anos, rogue por paciencia. Así que Dios me envió a Meglyn, mi primer nacida, y aprendí. Pero todavía me desconcertaba mi capacidad de hacer frente a una niña tan enérgica. Rogué por mas paciencia. Y Dios me envió a Madison. Entre las dos de ellas, aprendí como ser paciente con toda clase de niños. Pero todavía no pensé que estaba donde quería estar. Rogue de nuevo, y Dios me envió a Ben. Que fue cuando aprendí a ser paciente con los adultos también.

Madison y Ben han traído a mi vida tal diversidad y entendimiento del cuadro mas grande. A partir del momento, hace cinco anos, cuando el doctor sacudió su cabeza y dijo que mi hija nunca vería, sabia que la vida nunca seria igual. No se me permitió permanecer igual, estar estancada en mis capacidades y en mis pensamientos. En abogar para las necesidades de mis niños en la educación, el servicio social, y los sistemas medicos, crecí de cada manera. El resolver sus necesidades ha hecho mas que cualquier otra experiencia que haya tenido que siempre ayudarme a purgar el egoísmo de mi corazón. Me han ayudado a desarrollar una comprensión y una compasión mas profundas para toda la gente. Mis niños me han moldeado para tener confianza en mi capacidad de abordar los varios cansos en esas arenas. Ben, especialmente, me dio el valor de hacer frente a mis miedos peores y todavía de hacer el mejor trabajo que podría como madre.

Ben me ha movido para aprender mas, hacer mas, y ser una persona mejor. Aunque él estaba ciego, me dio ojos para ver lo que no había visto antes. Aunque él era sordo, me enseño a escuchar con un corazón y una mente abierta. Aunque él era muy enfermo, me dio fuerza enorme. Ben me dio tal alegría. Las cosas mas pequeñas me dieron los placeres mas enormes. Los momentos breves que pude sostener su mano, los pocos tiempos que me pudo abrazar, el tiempo que me dejo sostenerlo por horas y jugar fuertemente, las sonrisas hermosas, el meneo de su cuerpo cuando estaba encantado. Estos momentos eran mejor que vacaciones, promociones, y fiestas de lujo. Con sus necesidades del cuidado medico y del equipo costoso, sabia que nunca estaría llena de diamantes, mejor, me llene de alegría y felicidad.

Debido a Ben, he sabido que es alegría y felicidad completa. Agradezco a Dios diariamente por habérmelo enviado.

Creo que Ben ha satisfecho su propósito aquí en la tierra. Muchos de nosotros pasan las décadas intentando hacer nuestra llamada, inventamos algo, mejoramos algo, lo que sea. Algunos nunca satisfacen su llamada. En apenas tres años cortos, Ben ha hecho más; através de él, se salvan las almas. Él ha tocado a cada uno de nosotros profundamente y nos ha cambiado para siempre.

A los que temieron sus impedimentos y inhabilidades de salud, deje por favor que su vida y muerte le inspire a que alcance hacia otros en necesidad. Si usted se siente solo, tome el corazón que es dar su amor a otros para que se sienta realmente amado.

Sé que le entristece mi situación. Pero es esa sensación, esa capacidad de sentirse verdadero amor y el deseo de dar-lo que inspira lo mejor de los nosotros. No dé apague ese deseo. Deje que el dolor sea el resplandor de la alegría y de la capacidad de dar fácilmente a cualquier persona en necesidad en cualquier momento. En esa manera, mi perdida no será inútil, y así la vida y muerte de Ben abra ayudado a mucha gente.

English version of this article(Versión Inglesa)

Summer 2000 Table of Contents
Versión Español de este artículo (Spanish Version)

By Alison Rickerl, Mom, Houston, TX

No more oxygen tanks, pulse oxymeters, and vile medications. No more standers and wheelchairs and AFOs. No more nebulizer treatments and cleaning vomit off the carpet. No more late night emergencies, hospitalizations, tubes, wires, and syringes. Blessed relief... No more hug and kisses. No more crooked smiles. No more delighted full-body wiggles. No more roughhousing on the floor. Wretched grief...

My son died. Some say there is no greater pain than to lose a child. I'm sure others feel that pain every bit as keenly as I do. Ben touched many people very deeply. That pain would not hurt so much if the love was not so deep. There is no greater love than that of a parent for a child.

Benjamin was only 3 years old when died. In three short years, Ben faced more medical problems than most people do in 75 years of life. His disabilities and health impairments have 3 hardly been conducive to a "normal" lifestyle. Life has been difficult for all of us these past three years _ but I would not trade a second of it. Ben was an incredible gift of love, and I am so grateful for the time I had with him.

Many years ago, I prayed for patience. So God sent me Meglyn, my first-born, and I learned. But I was still dissatisfied with my ability to cope with such an energetic child. So I prayed for more patience. And God sent me Madison. Between the two of them, I learned how to be patient with all kinds of children. But still I didn't think I was quite where I needed to be. So I prayed some more, and God sent me Ben. That's when I learned how to be patient with adults, too.

Madison and Ben have both brought into my life such diversity and understanding of the bigger picture. From the moment, five years ago, when the doctor shook his head and said my daughter would never see, I knew life would never be the same. I was not allowed to stay the same, to become stagnant in my abilities and thinking. In advocating for my children's needs in the education, social service, and medical systems, I grew in every way. Meeting their needs has done more than any other experience I've ever had to help me purge selfishness and pettiness from my heart. They have helped me develop a deeper understanding and compassion for all people. My children have molded me to be confident in my ability to tackle the various hurdles in those arenas. Ben, especially, gave me the courage to face my worst fears and still do the best job I could as a mother.

Ben has moved me to learn more, do more, and be a better person. Even thought he was blind, he gave me eyes to see what I had not seen before. Even though he was deaf, he taught me to listen with an open heart and mind. Even though he was very sick, he gave me enormous strength. Ben gave me such joy. The smallest things gave me the most enormous pleasures. The brief moments that I could hold his hand, the rare time he was able to hug back, the times he was able to let me hold him for hours, and even roughhouse, the beautiful smiles, the stiff wiggle of his body when he was delighted . . . these moments were better than vacations, promotions, and fancy parties. With his needs for expensive health care and equipment, I knew I'd never drip with diamonds . . . better, I dripped with joy and happiness.

Because of Ben, I have known complete joy and happiness. I thank God everyday for sending him to me.

I believe that Ben has fulfilled his purpose here on Earth. Many of us spend decades trying to do what we are called to do _ invent something, improve something, whatever. Some never do fulfill their calling. In just three short years, Ben has done more; through him, souls are saved. He has touched each of us deeply and we are forever changed.

To those of you who were afraid of his disability and health impairments, please let his life and death inspire you to reach out to others in need. If you are lonely, take heart that it is in family 4 the giving of love to others that you learn to feel truly loved.

I know you feel very sad for me. But it is that feeling _ that ability to truly feel caring and giving _ that inspires the best in all of us. Don't turn that off. Let that pain turn into the glow of joy and the ability to easily give to anyone in need at any time. In that way, my loss is not in vain, and Ben's life and death will have helped so many people.

Versión Español de este artículo (Spanish Version)

por: Alison Rickerl, Houston,Texas

 

Nuestra hija Madison recientemente se unió a las filas de graduados de ECI. Madison cumplió tres años el 16 de julio y celebramos con una gran fiesta. Invitamos a todos nuestros seres queridos y a todos los que han ayudado a Madison, incluso a sus maestras, y a sus terapeutas y familias. La fiesta fue una gran oportunidad para celebrar la vida de Madison y sus logros, así como para demostrar nuestro agradecimiento.

Con la entrada de Madison a una nueva etapa en su educación, me encuentro reflexionando sobre nuestra vida durante los tres últimos años. Estos años estuvieron llenos de innumerables horas en terapia física, terapia ocupacional, terapia de lenguaje y entrenamiento de la vista. Hemos tenido consultas con especialistas en orientación y movilidad, especialistas en nutrición, con una terapeuta de música y un consejero de familias. Añadamos a eso cantidades de visitas a los pediatras, oftalmólogos, optometristas, ortopedistas, ortotólgos, neurólogos, genetistas y ENTs. ¡Y el papeleo! Hemos presentado solicitudes a aproximadamente una docena de agencias, tuvimos inumerables juntas con trabajadoras sociales, ocho juntas IFSP y cuatro juntas ARD. Hasta hemos tenido que utilizar el proceso de quejas ECI.

El dinero que anteriormente usábamos para comprar ropa fina y salir de vacaciones ahora lo usamos para asistir a las conferencias, comprar AFOs (enderezador de tobillos), cirugías para colocar tubos en el oído, lentes y terapia. Gastamos más dinero en juguetes que si solamente tuviéramos hijos "típicos" - porque hemos comprado casi todo lo que la terapeuta ha traído y a lo que Madison ha mostrado una reacción positiva. Anualmente, para febrero, ya hemos llenado el deducible de nuestro seguro, y pagamos más en copagos por las visitas al doctor que lo que otras personas pagan por sus primas de seguros. Hemos pasado una gran cantidad de tiempo en la sala de espera de los Shriners para obtener ayuda con el "carrito" de Madison. Las horas en nuestro empleo son organizadas alrededor de las citas con los terapeutas. Pasamos más tiempo en el teléfono hablando con las agencias, las trabajadoras sociales, las maestras, las terapeutas y la compañía de seguros que el que pasamos con las personas que amamos.

Ninguna salida de familia es solo por placer - sino para alguna clase de estímulo. El subir las escaleras no es únicamente para ir al "cuarto de terapia", sino es terapia física en sí mismo. El jugar con la masilla tiene dos propósitos - desarrollar las habilidades de movimientos finos y trabajar en la integración de los sentidos. El propiciar la interacción de un niño con otro no es solo para alentarlos a jugar, sino también para enseñar interacciones de comportamiento social adecuado y desarrollar las habilidades de conversación. El buscar juguetes para jugar es un buen ejercicio para ejercitar las habilidades de vista, tal como la de buscar con la vista.

Algunas personas, aún las maestras, actualmente me dicen que en realidad no importa cuán arduo trabajemos con nuestros hijos - algunos de ellos están programados para hacer cosas diferentes y a diferentes épocas durante su desarrollo. Yo no creo en eso, y, si lo creyera, no me hubiera forzado a hacer la terapia. Yo siempre me quedaría con muchas dudas de "¿qué hubiera sido si?" ("¿qué hubiera sucedido si en lugar de irme al cine con mi esposo ese día hubiéramos ayudado a Madison a practicar subir las escaleras una vez más, quizá para ahora ella hubiera podido...?" Todo lo que sé es que yo hago todo lo que puedo en el tiempo que tengo y espero que sea suficiente para alentar a Madison a tratar de hacer más.

Yo dedico una gran cantidad de tiempo trabajando con grupos de padres porque encuentro en ellos un gran consuelo y compañía, así como educación. Otros padres que "han pasado por lo mismo" me han dado el conocimiento y la confianza para hacer lo que yo creo es mejor para mi hija.

He puesto toneladas de esfuerzo adicional trabajando como voluntaria en el jardín de niños, limpiando el aula, pintando el mobiliario e iniciando una organización padres-maestros para alentar a otros padres a involucrarse en las actividades escolares. He proporcionado a las maestras material para que lean, y he tenido juntas con ellos para ayudarlos a comprender lo que Madison es capaz de hacer y sus debilidades. He cuidado a los alumnos para que el personal pueda tener juntas con los terapeutas. Dedico mucho tiempo a Madison, antes y después de las terapias, para hacer la transición menos difícil. Regularmente envío regalos y cartas de agradecimiento. Aún así, algunas personas han sugerido que quizá yo estoy exigiendo que el personal le dé mucha atención a mi hija. Una vez, un padre me reprendió por pedirle a las maestras que cargaran a Madison y la llevaran a donde otros niños estaban escuchando la lectura de un libro. Todo lo que realmente quiero que hagan es que se aseguren que Madison participe en lo que los otros niños están haciendo - y que mi hija reciba la educación por la que pago. La pregunta que siempre está presente en mi mente es - si el jardín de niños es mejor o peor para mi hija incapacitada que el quedarse solita en casa con una cuidadora.

Mi esposo y yo hablamos de nuestros empleos, pero ya no los vemos como carreras, ya que no podemos invertir el tiempo adicional necesario para lograr los "ascensos". Yo he tenido que cambiar de empleo en dos ocasiones tratar de encontrar supervisores que sean flexibles con mi horario. Todavía no encuentro uno que me ofrezca la situación ideal.

Las vacaciones que no tienen nada que ver con una conferencia sobre incapacidades son un sueño lejano. El costo de salir ocasionalmente con mi esposo tiene que ser evaluado en contra del montón de cuentas médicas. El poquito tiempo que pasamos lejos de nuestra hija a veces se siente como si fuera tiempo perdido, que pudiéramos usar para terapia; y siempre nos acompaña un sentimiento de culpa.

La gente siempre nos dice: "cuídate a ti misma", "trabajas tanto", o "eres increíble". Algunas veces, yo pienso que voy a vomitar si oigo esos comentarios una vez más. Yo no pienso que hago nada más por mi hija que lo que hacen otros padres que tienen hijos incapacitados.

Aún así, a menudo siento que no tengo suficiente tiempo para hacer todo bien. He asistido a casi todas las terapias de Madison, y estamos convencidos del concepto ECI, el cual considera que los padres son los maestros principales. Hacemos las terapias como las han recetado, pero no puedo decir que hemos hecho todos y cada uno de los pequeños ejercicios todos los días en el transcurso de los tres años. Asisto a todas las juntas de los grupos de padres y a las juntas de las mesas directivas, pero tengo que admitir que no siempre voy preparada.

A menudo encuentro, al final del día, que no he hecho algo importante. Quizá olvidé regresar una llamada telefónica o llevar los carnets de inmunización a la consulta. Pierdo cartas que me han enviado con información o le grito a la gente cuando me siento muy cansada. Mi carro se ha quedado sin gasolina. Nunca saco la ropa de mis hijos para el día siguiente, ni preparo sus lonches la noche anterior. He regresado de la tienda con solo refrescos, papitas y barras de chocolate, y en ocasiones, cuando me encuentro demasiado tensa y agotada, a veces descubro que no contamos con alimentos nutritivos para preparar las comidas. No, yo no dejo que mis hijos coman esas cosas que no son nutritivas - pero si lo hago!

Así que en realidad, a veces me falla. Y la gente me lo dice. El boletín que preparé no estuvo perfecto. Las invitaciones a la fiesta no llegaron a tiempo para que los invitados avisaran que iban a venir. El teléfono inalámbrico y el control remoto no están en donde deben de estar. Me frustro con los niños muy fácilmente. Y - ¡Dios no lo vuelva a permitir!...... que llegue un minuto y medio tarde a recoger a mi hijo mayor del jardín de niños, después de haber andado a la carrera todo el día de un lado a otro entre mi empleo y las terapias. ¡Me cobran $5 más por ese minuto y medio!

Casi todas las noches me acuesto totalmente exhausta, demasiado cansada para moverme, aún si todavía haya algo que se necesite hacer - como pagar las cuentas, cotejar el saldo de mi chequera, llenar la formas para el doctor, hacer listas de cosas importantes, preparar la ropa para el día siguiente, lavar la ropa, escribir notas de agradecimiento, etc.

Al pasar revisión a los tres años pasados, tengo mucho en qué reflexionar. Hemos tenido épocas tristes y épocas felices. Hemos aprendido a verdaderamente apreciar la vida y las pequeñas alegrías que nos ofrece.

¿Le hemos dado a Madison suficiente terapia estos últimos tres años? Quizá sí, quizá no. Creo que nunca voy a saber la respuesta, pero sé que he hecho mi MEJOR ESFUERZO para intercalar sus terapias con mis otras responsabilidades.

¿He luchado bastante para obtener los servicios que pienso que le puedan beneficiar? Más vale que me lo crean. He descubierto que sin estos servicios en forma regular, sería mucho más difícil para mí encontrar tiempo para las terapias. En otra palabras, el tener suficiente apoyo en una forma regular, de los maestros y terapeutas, me ha ayudado a sentir confianza en mi habilidad para hacer la terapia correcta y regularmente.

¿He buscado enterarme tanto como puedo acerca de la incapacidad de Madison y de lo que ella necesita, y acerca de los asuntos de incapacidades en general para poder efectivamente ayudarla a desarrollarse y crecer? Sí, lo he hecho, y también he tratado de compartir con otros padres lo que he aprendido.

¿He solicitado todos los servicios y apoyo que posiblemente puedo solicitar para asegurar que mi familia no esté agotada económicamente porque tenemos una hija incapacitada? Sí, lo he hecho. Y no he dejado que mi orgullo me detenga al tratar de obtener acceso a los servicios sociales. Aún que recibamos la mínima ayuda, algún día yo honestamente podré decirles a mis hijos que no pudimos ahorrar para sus estudios universitarios, pero que tratamos todo lo que pudimos.

¿Le doy suficiente atención a mi hija "normal"? No, ni siquiera se aproxima a lo que ella se merece. También le he gritado un poquito más de lo necesario, y le he dado un poco más de las responsabilidades adecuadas para una niña de su edad. También le digo que la amo enormemente y trato de pasar con ella algo de tiempo especial para hacerle saber lo importante que ella es para mí.

¿Le doy a mi esposo suficiente atención? No. Tampoco recibo suficiente atención de parte de él. Pero hablamos de las metas comunes para nuestra familia y que algún día habrá suficiente tiempo para nosotros.

¿He trabajado mis "40" horas semanales en mi empleo? No, y no ha sido fácil complacer a mis supervisores y al mismo tiempo cumplir con las responsabilidades en mi hogar. Pero me he hecho una experta en manejar prioridades, lo que es de gran ayuda en mi hogar y en mi empleo.

En pocas palabras, aún que no he hecho mucho de manera perfecta, he tratado de hacer tanto como he podido... considerando mi situación. Puedo honestamente decir, que en los últimos tres años, he hecho lo más que he podido para ayudar a mis hijas a crecer y desarrollarse a todo su potencial - porque con ardor estoy tratando de alcanzar el mío.

by Alison Rickerl, Houston, Texas

Our daughter Madison has recently joined the ranks of ECI graduates. She turned three years old on July 16th and we celebrated with a huge birthday party. We invited everyone we love and everyone who has helped Madison, including her teachers and therapists and their families. It was a wonderful way to celebrate Madison's life and her accomplishments and show our appreciation.

As Madison enters a new phase in her education, I find myself reflecting on the past three years of our lives. They have been full of countless hours in physical therapy, occupational therapy, speech therapy and vision training. There have been consultations with orientation & mobility specialists, nutritionists, a music therapist and family counselor. Add to that scores of visits with pediatricians, ophthalmologists, low vision optometrists, orthopedists, orthotists, neurologists, geneticists, and ENTs. And the paperwork! We've applied to about a dozen agencies, had scores of meetings with social workers, eight IFSP meetings and four ARD meetings. We've even had to use the ECI complaint process.

Money that used to be spent on nice clothes and vacations now is used for conferences, AFO's (ankle foot orthotics), ear tube surgeries, glasses, and a therapy swing. I spend so much more money on toys than I would have if we only had "typical" kids - we have almost everything that a therapist has brought over that Madison responded well to. Our insurance deductible is met by February every year, and we pay more in copayments for doctor's visits than some people pay in insurance premiums. We've traded away a significant amount of time in the Shriner's waiting room in order to get help for Madison's "cruiser" (special needs stroller). Time on the job is scheduled around therapies. We spend more time on the phone with agencies, social workers, teachers, therapists, and the insurance company than we do with people we love.

No family outing is just for fun - it's stimulation of some sort. Climbing the stairs is not only to get to the "therapy room", but also physical therapy in itself. Playing with play-dough has two purposes - developing fine motor skills and working on sensory integration issues. Engaging one child with another is not just-for-fun play dates, but also to model appropriate social interactions and to work on conversation skills. Looking for toys to play with is a good way to work on visual skills like scanning.

Some people, even teachers, actually tell me that it doesn't really matter how hard we work with our kids - some are programmed to do things differently and at different times during their development. I don't believe that, and, if I did, I couldn't have made myself do the therapy. I'll always ask myself lots of "if only" questions (if only I didn't go to that one movie with my husband that month, then we could have made her climb the stairs one more time, and maybe by now she could.....). All I know is that I do as much as I can in a given time period and hope it is enough to encourage Madison to want to try to do more.

I spend significant time working with parent groups because I find a lot of comfort and companionship, as well as, education in them. Other parents who've "been there" have given me the knowledge and confidence to do what I feel is best for my child.

I've put in tons of extra effort and volunteer time at the kids' day care including serving as the room captain, cleaning the room, painting furniture, and starting a PTO to get more parents involved. I've given the caregivers written material to read and had meetings to help them understand Madison's strengths and needs. I play with the other kids so the caregivers could meet with the therapists. I spend extra time before and after therapies with Madison to ease the transitions. I give gifts at every occasion and write letters of appreciation regularly. Nevertheless, people have suggested to me that maybe I ask the caregivers to do too much for Madison. Another parent once chided me for asking the teachers to pick Madison up and move her to where other kids were listening to a book being read. All I really want them to do is make sure Madison is doing what the other kids are doing - and getting what I pay for in child care. The question, of whether day care is better or worse for my disabled child than being home alone with a baby sitter, will always be foremost in my mind.

My husband and I talk about our jobs, but don't really think of them as careers anymore, since we can't invest the extra time it takes to "get ahead". I've had to change jobs twice, trying to find supervisors who could be flexible with my schedule. I still haven't found a great situation.

Vacations that have nothing to do with a disability-related conference are dim memories. The cost of occasionally going out with the spouse has to be weighed against the stack of medical and other bills. The tiny bit of time spent away from the kids sometimes feels like wasted therapy time, always accompanied by the pang of guilt.

People always say to us, "Take care of yourself", "You do so much", and "You are so amazing". Sometimes, I think I'll throw up if I hear it one more time. I don't think I do any more than anyone else should do if they have children with disabilities.

Even so, I often don't feel I have enough time to do anything really well. I've gone to most of Madison's therapies, and we've really bought into the ECI concept that the parents are the child's primary teachers. We do the therapies as prescribed, but I can't say I've done every little exercise every day over the past three years. I attend all of the parent group meetings and board meetings, but I have to admit that I'm not always fully prepared.

Often I find myself at the end of the day having not done something important. I forget to return phone calls and take immunization records to the next doctor's appointment. I lose newsletter inputs and bark at people when I'm really tired. I let the car run out of gas. I never lay the kids' clothes out or pack their lunches the night before. I've even come back from the grocery store with only sodas, chips and nutty bars and no real food when I'm really stressed out and too tired to think about preparing meals. No, I don't let my kids eat that junk - but I do!

So I really do screw up a lot. And people let me know it, too. The newsletter was not quite perfect. The birthday party invitations didn't arrive in time for people to RSVP. The cordless telephone and the remote control are not where they should be. I get frustrated with the kids a little too easily. And - heaven forbid! - I'm 1 1/2 minutes late to pick my older child up at day care after I've run my tail off all day back and forth between work and therapies. They charge me an extra $5 for that 1 1/2 minutes!

Most nights I go to bed totally exhausted, too tired to move, even though there's always something else that could be done - paying bills, balancing the checkbook, filling out medical paperwork, making priority lists, making lunches, setting out clothes for the next day, washing laundry, writing thank you notes, etc.

In looking back over the past three years, I have much to reflect on. There have been sad times and happy times. We have learned how to truly appreciate life and all of its small joys.

Have I done enough therapy with Madison in her first three years? Maybe, maybe not. I won't ever really know, but I know I've done MY best in fitting in her therapies with my other responsibilities.

Have I fought hard enough to get her the services that I think she'll benefit from? You better believe it. I've even found that without regular services, I have a much harder time making time for therapies. In other words, having lots of support on a regular basis from teachers and therapists has helped me feel confident in my ability to do therapy properly and regularly.

Have I sought as much knowledge about Madison's disability and her needs and about disability issues in general so that I can be effective in helping her develop and grow? Yes I have, and I have tried to share what I have learned with other parents as well.

Have I applied for every service and support I possibly can in an effort to ensure my family is not overburdened financially by having a child with disabilities? Yes, I have. And I have not let my pride stand in the way of trying to access social services. Even though we qualify for very little help of any kind, I can honestly tell my children that I did my best even though they have no college funds.

Have I given enough attention to my "typical" child? No, not anywhere near what she deserves. And I've yelled at her a little too much and given her a little too much responsibility for her age, too. I'm not the perfect parent, and I tell her that. I also tell her that I love her enormously and try to spend some special time with her to let her know how important she is to me.

Have I given my husband enough attention? No, and I don't get enough from him, either. But we talk about our common goals for our family and that one day there will be time for us.

Have I put in my "40" at work? No, and it hasn't been easy making employers happy and still fulfilling my obligations at home. But I've become incredibly adept at managing priorities, which is a very big asset at home and on the job.

In short, even though I've not done very much perfectly, I've tried to do as much as I can, given the situation. I can honestly look back on the past three years and know that I've done the best I can to help my children grow and develop to their potential - because I am trying so hard to reach mine.

by Claire Muller, Parent, Winchester, KY

Editor's Note: One day I came across this posting on the Deafblind Listserv from Claire to one of her on-line friends. I was so moved by what she wrote and knew that the many parents who read SEE/HEAR would relate. I contacted Claire by email and she gave me permission to share this with you. She also said she would love to hear from parents in Texas. Her email address is and her ground mail address is 160 Patton Lane, Winchester, KY 40391. She also shared this about her daughter, Shelly:

"Shelly is 11 years old now, and has been our foster child since she was 2 1/2 years old when she first left the hospital. Stomach problems keep her on an IV for 12 hours a night, but she is up and about during the day. She is blind, with some light perception, has severe-moderate hearing loss in the left ear, and profound loss in her right. She is bright and inquisitive, and happy. She is a joy in our lives."

It was that Jesus in the Temple thing. That thing that happens to most parents at one time or another, and all we can think is that we are in good company because it happened to Mary and Joseph.

It was early spring and our first very warm day. We drove home from church and up our long driveway. You can't see our house from the road, and the driveway curves and makes our home even more out of the way. I was thinking about getting out of dress-up clothes, and Tom was thinking that the van was clunking.

After helping Shelly, who was then seven, out of her seat, I let her play around the yard and van with the other kids, who were reluctant to leave the beautiful day to go in the house. Tom thought he could stay out and make a few adjustments on the vehicle without getting dirty, so I ran in to change into shorts. It took a few minutes to locate my summer clothes, then I went out to find out if tuna fish, our regular Sunday lunch thing, was going to be okay with Tom. I found him still engaged in the mysteries of guys, expecting to come to terms with this clunking noise, and do it before the problem's cost exceeded the original cost of the van. I said, "So where did Shelly poke off to?"

He gave me the beginnings of a wary look and answered, "She went inside with you ... I thought."

"I left her here by the van, playing when I went in to change, and I thought you knew it!"

Mary must have had the same disbelief in her voice when she confronted Joseph, though I am glad I didn't have anyone universally important to the world's salvation to start searching for. It was a bad enough feeling we were both having as we started in around the yard, which is fenced in a vague sort of way with black plank horse fencing, and not catching any sign of Shelly.

When you search for a deafblind child it is different from any other 'kid search'. You don't bother to yell her name. You look in the unlikely places, such as near the compost pile. She has before wandered briefly into the woods surrounding our home, where branches can be a threat. And once into the field across the driveway on our hundred acres of tall grass and cattle. So all of our children without the excuse of a wheelchair were dispatched to these areas.

I was about to check the fields myself, when I saw an awful look come over Tom's face. It seemed impossible to think about, but all the way down our long and winding driveway, and not far from the road, is the bridge, with no sides and the water up high on this early spring day. As soon as the thought struck him, Tom took off. I have never seen him run so fast; he may have never done so. He was like a crazy person, running through the field alongside the drive and out of my sight. I caught up visually with him at the bend of the drive, still knowing that it was impossible that Shelly could have gone so far in such a short time.

Tom had crossed the bridge and was just catching up with Shell two or three feet before she would have stepped into the busy, blind curve of the road. I watched as he just touched her arm, and she happily turned to him, without any fuss took his hand and let him lead her back on the long walk home. They crossed the bridge with the water rushing below, and the worn out guardian angels sitting on the sides in well deserved rest. I printed in my mind the sight of her; with her soft green dress and sneakers, with her amazingly deep red hair, thick and flowing past her waist, with her innocent, happy face upturned in the warm breeze, her brave, jaunty walk.

Tom had said nothing to Shell. She couldn't have heard the things another child would have heard, "You had us scared to death!! Don't you know you could have killed yourself!" All the things an anxious parent blurts out in fear. She couldn't see the cars, or the water, or the fright in our faces. She was totally and immeasurably innocent. She had felt the world, and it was good, and she went out to embrace it.

by Melissa Thompson, Family Support Specialist, TSBVI Outreach

As I prepared to write this article, I thought back to the time my son, Matthew, was born. The joy of having him was indescribable, yet being a first-time mom felt overwhelming. Taking care of a baby was so demanding, it didn't leave me much time to take care of myself. I felt isolated and exhausted. Much to my benefit, the hospital where I delivered had told me about a new mother's support group there in the hospital. AHHHHHHHH! How refreshing and peaceful it is to me to think about it now. The support given to me by the other mothers in the same situation helped me in my transition to motherhood.

Having worked with families who have children with disabilities, I have seen how families experience great emotional turmoil and deep chasms of pain. A lot of families suffer, but they may not all have the strength to do something about their needs. As is human nature, there may be fear in acknowledging the need to themselves. To me, a family demonstrates its strength and caring by reaching out to others. Numerous books point out that a healthy family trait is recognizing the need for help and seeking it out. Fact is, everyone will at some point need help—everyone needs support from a spouse, a mother, brother, friend, Rover, Father John, etc. The social worker in me also remembers how one of the basic human needs is the need for socialization. This is especially true for parents of children with disabilities. One powerful outlet of support to help meet this need is a parent group.

I have a deep belief in the value of parent support groups because they offer many advantages. When families with the same concerns meet, it can provide mutually needed information and emotional support. There is a sense of community, understanding, a place to laugh about the same things, talk about problems, and help each other. Being able to talk openly with others in the same situation can help you brainstorm for realistic, pragmatic solutions and is often exactly the support you need. The groups I have been able to observe provided a dual role of having an educational and therapeutic focus, thereby meeting many needs of the parent. Most importantly, parents can help each other to "renew their spirit, determination, and enthusiasm for life," (Ripley, 1993) helping life run more smoothly.

Another advantage is the diversity of functions a group can serve. The Parent Support Groups module developed by the California State Department of Education lists the following functions of a Parent Support Group:

  • Provide on-going support
  • Help in time of crisis
  • Reinforce positive coping behaviors
  • Help focus anger and use its energy in positive ways
  • Share information, ideas and resources
  • Provide training for parents to increase skills
  • Help in dealing with educational, medical and other service agencies
  • Give an opportunity to relieve loneliness and form new friendships

As a matter of fact, I received a phone call just this past week from a mother who just wanted to talk to another parent. From my own experience with support groups, there are some questions you should ask yourself that will help you find the best group to meet your needs (borrowed and adapted from an article by Suzanne Ripley with the NICHCY, June, 1993):

1. What are your personal needs? Do you want to know other families who have a child like yours? Are you looking for moral support or advocacy training? Do you need a course in sign language or a play group for your two-year-old? Are you interested in becoming involved in local decision-making processes for school and disability issues? Are you interested in hearing speakers on special education and disability topics?

2. What parent groups are available in your community? To help you get "hooked-up", a list of active national and regional groups is included at the end of this article. A great place to start is by talking to your local TCB caseworker to find out what groups are active in your area. If you do not have a caseworker, check with the special education staff at local schools, preschool, early intervention programs, the social service department at the children's hospital, the vocational rehabilitation programs, or the group home programs. Be sure to explore groups of parents with children of varying disabilities as well. For example, there may not be a group for parents of children with visual impairments, but there may a group for parents of children with cerebral palsy or other disabilities. Also, look in the phone book under the specific disability or in the yellow pages under Disability Service. Remember that it is what a group does that is important, not what it is called. Finally, contact the NICHCY at 1-800-695-0285 for a State Resource Sheet or us at TSBVI Outreach at 1-800-TSB-KARE for more information.

3. What kind of a "joiner" are you? Are you comfortable with formal organizations or do you prefer less structure? How involved do you want to be? You can always attend meetings once or twice before becoming a member. Remember, sometimes the best way to become involved is to volunteer to take a role in some activity. By participating, you will get to know other members and learn more about the goals and functions of the organization.

4. Assess the need to start a new group. Many times there is no local group that meets your family's needs, particularly in smaller rural communities. Remember, you do not have to be a part of a formal group in order to reap the benefits. A simple one-to-one friendship over a cup of coffee or a picnic with one other family in your community can be mutually beneficial.

While it may be worthwhile to join a faraway group to get its newsletter or other information by mail, you may still want to have a group of local people within your community to address the needs you have identified. If the need for a group is identified and there are people who want to see such a group in their area, then it's time to get together and start your own organization. This takes work, but it can certainly be done! The sample letters in Tables 1, 2, and 3 adapted from How to Organize an Effective Parent Group & Move Bureaucracies may help you begin.

Here's how to get your parent group started (from Guidelines to a Parent Support Group):

a. Compile a directory
b. Have an informal "Get Acquainted Party"; this is most successful at someone's home. Be sure to decide on the date for the next meeting.
c. Have a formal meeting. Become organized by electing officers, if necessary. Decide when, where, and how often the group will meet, allow time for discussion among parents about their children, plan future meetings that include speakers on topics of interest, and discuss fund raising projects and childcare.

Significantly, the role of the professional in parent support groups cannot be emphasized enough. The California module reports that "One third of self-help groups are started with the help of professionals." The California Self-Help Center has developed the following list of the roles professionals may take in relation to self-help groups:

  • Start a group—identify and network people in similar circumstances, meet with core group, model leadership skills at the first few meetings
  • Act as consultants—take directions from needs and requests of an established group
  • Refer to clients to appropriate self-help groups
  • Provide material support such as a meeting place, mailing, and copying
  • Inform or educate colleagues
  • Develop resource materials for use by self-help support groups

It is recommended that professionals who want to start a support group gain experience by becoming a member of a support group themselves or by sitting in on some open support group meetings.

Finally, it is worth noting that there may be families in your community who are not fluent in English and who have children with disabilities. Through the years, I have discovered that these families lack the ordinary means of support that you and I take for granted simply due to a language barrier and cultural differences. You will probably find that they, too, will be interested in the support available from other parents, but may not be comfortable in an English-speaking group. In this case, remember the following:

  • A one-to-one friendship can be very helpful, in terms of emotional support and information gathering especially if there is not a formal group of parents in your community.
  • If you're establishing a parent group or joining an existing group in an area where there are families who speak another language, you may want to share your information with them.
  • They may be interested in forming a parallel group, using the group's example.
  • It may be beneficial for all involved to arrange occasionally for translators. That way both groups can share ideas and concerns, let each other know the issues being discussed in each group, or attend when special speakers are invited to either group's meeting. Remember: You both can also benefit through presenting a united voice in the decisions made in your community!

As I faced motherhood, I knew that I could choose to continue to feel alone, overwhelmed and frustrated or I could join others who were also experiencing the same circumstances and emotions to improve my situation. The best decision I made was to join a support group.


Table 1 - Sample letter to inform other parents of your desire to start a parent support group.

Adapted from "How to Organize an Effective Parent Group and Move Bureaucracies".

CALLING ALL PARENTS OF CHILDREN WITH VISUAL IMPAIRMENTS AND DEAFBLINDNESS!

A special meeting is being called to organize a Parent Group at Our Town School.

DATE: October 1, 1997
TIME: 6:00 - 7:30 p.m.
PLACE: Our Town Public Library Conference Center

ISSUES TO BE DISCUSSED: Educational programs for the a child with visual impairments or deafblindness

COME TO THE MEETING AND SHARE YOUR OPINIONS!

For more information call: Joe and Jane Deer at 555-0000 or Sally Smith at 555-1111.


Table 2 - A notice for organizations trying to develop local support groups may be placed in a newsletter or posted on bulletin boards in various public buildings. Adapted from "How to Organize an Effective Parent Group and Move Bureaucracies".

Parents of Children with Visual Impairments and Deafblindness,

If you would like to know more about the Council for Children with Visual Impairments . . .
If you would like the Council to help you organize a parent group . . .
If you would like to work with the Council to get better services for the children in Our Town with visual impairments . . .
The Coordinating Council for Children with Disabilities would like to meet you.

Call: Harry Helper, Caseworker for the Council for Children with Visual Impairments
(555) 555-2222 between the hours of 8 a.m. and 5 p.m. or
(800) 555-2222 to leave a message after 5 p.m.

You may also contact us by mail at :
Coordinating Council for Children with Visual Impairments
95 Work Road
Our Town, Texas 00000


Table 3 - Existing parent groups may want to notify parents each year of their group's efforts in order to keep the membership growing. Adapted from "How to Organize an Effective Parent Group and Move Bureaucracies".

Dear Parents:

Welcome to the Our Town Parent Group! Last year we had a very active parent group at Our Town Elementary and many have expressed an interest in carrying on this tradition. We would like to start by inviting you to become a part of the school directory. This will allow parents to keep in contact with one another. Also, some parents expressed an interest in having speakers invited in to talk with parents.

Please take time to fill out the form below and send it to Principal Nance. Following the directory form is a listing of suggested topics for speakers. Please check those that you might be interested in hearing. Also, if you have any additional suggestions, please add them to the bottom of the listing.

DIRECTORY:

Parents name: _________________________________________________________
Address: _____________________________________________________________
Telephone: ________________________
Child(ren)'s name attending Our Town Elementary: ______________________________
Other children's names: ___________________________________________________
Subjects of interest:
_____ Speech therapy ______ Hearing problems ______ Respite care
_____ Play therapy ______ Grieving process ______ Parenting skills
_____ Vision problems ______ Eating problems ______ Orientation & mobility

Let's all work together and make a strong parent support group. A good parent group can meet needs that cannot be met anywhere else. We have all been there and we understand in ways that are impossible for anyone else. WE NEED EACH OTHER!

Jane Doe, Our Town Parent Group President


Table 4 - Active parent support groups and informational / resource organizations

National

National Parent to Parent Support and Information System
PO Box 907
Blue Ridge, GA 30513
1-800-651-1151 (voice/TTY)
(706) 632-8822 (voice/TTY)
(706) 632-8830 (fax)

National Organization of Parents of Blind Children
1800 Johnson St.
Baltimore, MD 21230
(410) 659-9314 (voice)
(612) 696-1975 (BBS)
(410) 685-5653 (fax)
http://www.nfb.org

Parents of Blind Children, Committee on the Blind, Multiply-Handicapped Child
1912 Tracy Rd. Northwood, OH 43619
(419) 666-6212

STATE / REGIONAL

Deaf-Blind Multihandicapped Association of Texas (DBMAT)
815 High School Dr.
Seagoville, TX 75159
(214) 287-1904

Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) & Visually Impaired Children's Program
4800 North Lamar
Austin, Texas 78756
1-800-252-5204
(512) 459-2549

Partner's Resource Network - PATH Project
1090 Longfellow
Beaumont, TX 77706-4889
(800) 866-4726

Austin

The BDSRA Texas Chapter
Batten Support Group-Austin Area
Contact: Ms. Florence Petri at (512) 335-0589

Pilot Parent of Austin - ARC of the Capitol Area 2818 San Gabriel
Austin, TX 78705
(512) 476-7044

Abilene
TCB VI Teen Support Group (Middle & High School) Abilene Area
Contact: Lori Lawson at (915) 672-1385

Beaumont
Parent support group meets the Third Thursday of the month from 2:00 p.m. to 3:30 p.m. at the Park Dale Mall (St. Elizabeth Resource Room)
Contact: Edna Osborn, VRT at (409) 838-5201

Corpus Christi
Coastal Bend Area Council for the Blind (Macular Degeneration)
Contact: Jane Mims at (512) 992-6596

Texas Association of Retinitis Pigmentosa
Contact: Dorothy Stiefel (512) 852-8515

For more information on other groups contact:
Dr. Sandra Fox
5866 S. Staples #102
Corpus Christi, Texas 78413
(512) 993-8063

El Paso
TCB & West Texas CM Project
(Spanish-speaking support group for parents of children with multiple disabilities) Meets every Thursday from 9 - 11 a.m. at the TCB office located at 1314 Lomaland Dr.
Contact: Agueda Contreras (915) 592-0895 or Jaime Barceleau at (915) 545-6763.

Fort Worth
Our Special Children for parents of children with developmental delays, meets the second Saturday of every month from 9:30 - 11:30 a.m. at the Cooks Children's Medical Center.
Contact: Emma Bell at (817) 265-6009.

Alexander Vision Resource Center has meetings the third Friday of the month (except in July and December) at the Cooks Children's Medical Center for parents of children who are diagnosed with a vision loss . Contact: Cathie Reed at (817) 885-4498.

El grupo La Familia se junta cada segundo Sabado del mes 12 - 2 p.m. en el Cooks Children's Medical Center. Llame: Emma Bell (817) 265-6009.

Houston
Houston Association of Parents of the Visually Impaired
Contact: Alison Rickerl at (713) 286-9820 or Kim Joiner at (713) 482-8131.

Liberty
Parents of Visually Impaired/Multiply Disabled Children
Contact: Rod & Glenda Hellyer at (409) 336-2723.

Lubbock
TCB & LISD Vision Support Group for students (elementary- high school ages).
Contact: (806) 766-0877

Mt. Pleasant
Consumer Support Group (for individuals with visual impairments) meets the third Monday of the month at 601 Start Dr. at 2 p.m.
Contact: Roger Purdy or Twyla Durmmond-Moore at (903) 831-3846.

Odessa/Permian Basin
Parent and Student Support Groups meet bimonthly during the school year.
Contact: Tamee Argo at TCB (800) 687-7034.

Port Arthur
The Arthur Smith Support Group for the Visually Impaired meets the second Wednesday of the month from 1-2:30 p.m. at the Collins Senior Housing Apartment Complex.
Contact: Jeffrey Girard at (409) 838-5201

Rio Grande Valley
Rio Grande Valley Parent Support Group (parents of children with visually impairments including those with additional disabilities) meets quarterly at the Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) in Pharr.
Contact: Rose Shotts at (210) 787-7364.

Contact Vicki Hardin at (915) 949-4601 or email

San Antonio
Alamo Area Association of Parents of the Visually Impaired.
Contact: Kim Pulis at (210) 590-1464.

Texarkana
American Council for the Blind meets the fourth Sunday of the month at 2 p.m.
Contact: Estell Merrill at (903) 838-6023.

Tyler
HUGS (Help Us Give Support) Community Support Group for Parents of Children with Special Needs
Contact: Barbara Farnum at St. Louis School in Tyler - (903) 531-3835.

Wichita Falls
Family Support Group
Contact: Candy Hickman at (904) 691-8675 or the TCB office in Wichita Falls.

NATIONAL

Association for Education and Rehabilitation of the Blind & Visually Impaired (AER)
206 North Washington St., Suite 320
Alexandria, VA 22314
(703) 548-1884

Council of Citizens with Low Vision International 6511 26th W.
Bradenton, FL 34207
1-800-317-2258

Council on Families with Vision Impairments
6212 W. Franklin St.
Richmond, VA 23226
(804) 288-0395

National Association for Parents of the Visually Impaired
PO Box 317
Watertown, MA 02272-0317
1-800-562-6265
(617) 972-7444 (fax)

http://www.spedex.com/napvi/

National Association for Visually Handicapped
22 W. 21st St. 6th Floor
New York, New York 10010
(212) 889-3141
(212) 727-2931 (fax)
http://www.navh.org

National Family Association for Deaf-Blind
111 Middle Neck Road
Sands Point, NY 11050
Voice: (800) 255-0411, extension 275
TTY: (516) 944-8637
Fax: (516) 944-7302

National Father's Network
The Merrywood School
16120 North East Eighth St.
Seattle, WA 98008
(206) 747-4004
(206) 282-1334
http://www.fathersnetwork.org/

Natinoal Information Center for Children and Youth with Disabilities
NICHCY
P.O. Box 1492
Washington, DC 20013-1492
1-800-695-0285 (V/TTY)
(202) 884-8200 (V/TTY)
E-mail:
URL: http://www.nichcy.org

National Organization on Disability
910 16th St. NW, Suite 600
Washington, DC 20006
1-800-248-2253
(202) 293-5960

Editor's Note: There are also many disability specific national level support groups. Each year in the January edition of Exceptional Parent Magazine an extensive listing of these organizations, as well as parent-to-parent support organizations is published. This magazine also offers, in each edition, a section for parents to write in to contact other parents of children with specific disability issues. Additionally, there are a number of Internet Websites that offer a new vehicle for support and information. Some that you may want to check out include:

The Family Village

Sibshop

The Beach Center of Families and Disability

 


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Nathanson, Minna N. (1986). Organizing & Maintaining Support Groups for Parents of Children with Chronic Illness and Handicapping Conditions. Association for the Care of Children's Health.

Parents helping parents and other parent support activities. National Information Center for Handicapped Children and Youth (NICHCY), Post Office Box 1492, Washington, D.C. 20013.

Parent Support Groups. California State Department of Education Special Education Division Program, Curriculum and Training Unit, Post Office Box 944272-Room 621B, Sacramento, CA, 94244-2720.

Poyadue, F. Steps to starting a peer support organization. Parents Helping Parents, 535 Race Street, Suite 220, San Jose, CA 95126.

Self-help/mutual support groups resource catalogue. California Self-Help Center, UCLA, 2349 Franz Hall, Los Angeles, CA 90024.

by Brenda Reusser, Parent and Clinical Research Coordinator, Baylor College of Medicine, Department of Dermatology

Summer is well underway and for many children that means playing out of doors and attending great summer recreation programs and camps. All the more reason to slather on the sun screen and cover up with protective clothing. Scientists throughout the world are recognizing the marked increase in the frequency of malignant melanoma, the skin cancer that often is fatal. Though there is debate regarding the reasons for the increase, all agree that protecting the skin from the harmful effects of the sun's rays is the best method of preventing this form of cancer as well as non-melanoma skin cancers called, Basal Cell Carcinoma and Squamous Cell Carcinoma.

Many of our children are dependent upon us to make this very important effort. Children with physical disabilities or vision loss may not be able to apply sun screen adequately without assistance. That is why it is important to help camp counselors and other attendants understand the significance of sun protection and the frequency of sun screen application. Provide sunscreen or sun block with an SPF (Sun Protection Factor) of at least 15 and reapply it every hour and after rigorous activities or swimming. Only purchase sunscreens that block both types of ultra-violate light, UVA and UVB unless your pediatrician has advised you otherwise. These sun products are called "broad spectrum". If need be, have the application of sun protection added to your child's list of medications as an extra reminder while attending day programs and summer camps.

Of note is the importance of proper sun glasses, especially to kids who have vision loss. Sun glasses with darkened lenses but no UVA protection will dilate the pupil allowing more UV rays to reach the back of the eye. Because the back of the eye has pigment, it is possible to develop a malignant melanoma, or other eye diseases such as cataracts and macular degeneration in later years. When coping with an already existing vision loss, the development of additional disease may make the difference between some functional vision and no vision at all. Always check to make sure that your child's sunglasses offer the maximum UV protection and blocks both UVB and UVA rays.

It is still considered very vogue to sport a deep tan, but remember that tanned skin is actually injured skin and the result is photo-aging (wrinkles and liver spots) or skin cancer. Take the time to teach your youngster about sun protection as part of a healthy life-style and prevent a host of sun-induced diseases in his or her adult years.

by Kate Moss, Family Support Specialist, TSBVI Deafblind Outreach

One of the qualities of being a human being is our ability to give and receive support. None of us is truly "independent", but rather the independence we have comes from the interdependent networks of support we build around us.

Dads and Moms need support from medical and educational professionals. They have a need to understand the diagnosis their child receives and the implications of that diagnosis; to have information about medical interventions and resources to pay for that intervention; and support in understanding the special education process, their rights within that process, and the components that make up a quality program for their child. They also need support from family and friends. They need support to ensure that their child is included in family events; that the nondisabled brothers and sisters are not shortchanged when the needs of the disabled child must take precedence over their needs; and that the whole family is welcomed in churches, schools, and other community environments. They need support from other parents of children with disabilities to give them courage, information, empathy, and a vision of what tomorrow might hold for them as a family. They need adults with disabilities to share their experiences, be a role model to their child, and to help them fashion a new dream of what their child might be as an adult.

Grandparents, siblings and other family members need support, too. Like the parents they need information, understanding, and access to resources that will help them address their own issues about having a family member with a disability. That means that professionals, other families, and people with disabilities need to reach out to these individuals, too.

That children and adults with disabilities need support, sometimes seems obvious; however, we often view it only in terms of medical, educational, or rehabilitative support. They need support to connect with other people with disabilities, to be included in the community, and to view themselves as having something valuable to share with those individuals who are not labeled "disabled".

Surprisingly, professionals need support, too. They need support to learn new skills and to be able to research and develop new techniques. They need support from families and people with disabilities to be able to acknowledge that they may not have an answer or know how solve certain problems that arise. They need support from their colleagues when all their efforts aren't bringing the result that is desired; when a child or a client who they work with becomes ill or dies; or when their own life or family is in trouble.

We all need to get comfortable reaching out for support and being able to offer to support to those around us. None of us can really go it alone. Whether we work through a formal support group, share with a friend over coffee, or connect over the Internet, building circles of support makes life better for everyone.