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Winter 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Jerry Herrera, Luling, Texas

The first time I realized that there was something wrong with my vision was when I was about six years old. My mom was explaining to my dad that she felt something was wrong with my vision. My dad did not want to hear it. To prove to her that I could see, he dropped a pocket full of change on the floor as he told her, "I'll prove it." My brothers and I scrambled to pick it up. I did not find one cent. This may sound cruel, but sometimes loved ones don't understand your situation or condition. Sometimes they do or say things that make no sense. For the record, I love my parents dearly and will never hold anything they've done or said concerning my vision against them.

I remember the first time I went to the optometrist. I couldn't figure out why I couldn't read the chart in his office. I felt I finally made some progress when I was able to see his finger a few feet away. The relationships I have established with my doctors are very vital in my every day struggles. Some doctors are very helpful, and some don't seem to care. Always be honest about what you can see and can't. No detail is too small. You really need to speak up so they can help. Medical technology is always changing. Try to stay informed about medical breakthroughs and studies as much as possible. All this information is there to help you understand and cope with your condition.

My vision is 20/400 in both eyes due to congenital nystagmus and keratoconus. In 1993, I had three cornea transplants to try to correct the keratoconus. My right cornea was done twice because my body rejected the donated cornea. Two things I want to point out, right off the bat. First, educate yourself on your diagnosis as much as possible, especially with the use of the Internet. Second, never take anything you read or hear to heart. Your situation will never be like someone else's. You may have similarities but a different situation or treatment.

One of the biggest challenges I have faced in my lifetime was attending public school in Lockhart Independent School District. At first the counselors placed me in special education classes where I remained until the fourth grade. I think this was a good idea because I could not see the blackboard and was able to learn faster in the resource classroom. After I proved that I could learn when I could see the work, I went to regular classes.

In my opinion, when you are young, going through primary, elementary and intermediate school, it's best that your parents or counselors help guide you through your education. When you are older (junior high and high school) no one knows about your capabilities, strengths, and weaknesses better than you.

Never sell yourself short when it comes to education. If you don't apply yourself you will never know how far you may go. I went through constant struggles trying to make my teachers, counselors, parents, and friends understand my vision impairment. I had help taking notes and used large print books and visual aids to be able to function in and around the classroom. A day never went by that I would not face a new obstacle. I learned a long time ago that no one can really help you unless you can make them understand what your main problem is in accomplishing a task. A task can be anything from getting up in the morning to taking standardized tests.

Just when I thought I could handle anything, I was faced with the reality that I had to go to work. This is where it really got difficult. I don't want to scare you, but this may be a struggle that you have for the rest of your life.

The number one rule is to never set limits, and try anything that may be of interest to you. As you proceed from one experience to another, you will realize your strengths and weaknesses. I would tell myself when I would fail at a job or task that at least I tried. I always learned from my failures. Believe me, failing hurts. I'll be the first to say that it's hard to bounce back when you fail, but you have to never give up. When you succeed, it feels wonderful.

Technology, adaptive materials, and low vision devices have played a big part in my life. I use all sorts of special equipment from large print books to multiple pairs of reading glasses to adapted kitchen utensils to CCTV to computers. I live by them. Dr. David Starnes, a low vision specialist, has been my guardian angel when it comes to visual aids. The Commission for the Blind and the rehabilitation facilities have been very helpful to me throughout my life. They have been involved with me from the day I went to school to the day I got my first job.

There will come a day when you may feel that you're at a point in life where no one can help. When I feel that I may have reached this point, I research what else can be done or what I can do to achieve my task. The main goal is never give up and always try to find a better way. Sometimes you may amaze yourself at the engineering talents you have. Be creative in finding ways to see better or perform a task.

My family has been my backbone throughout my life. I have a wife, Erlinda, two sons, Juan, 17, and Ray, 20, plus our lovely nine-year-old daughter Bonnie. I have been married for ten years. Every second of our marriage has been an adventure with more good times than bad. My kids make me strive even harder to succeed. I am very fortunate that I still have my mother, Mary, my father, Natividad, two wonderful brothers, David and Nick, and my sister, Gerisma. If it weren't for my family I wouldn't be as rich as I am today. No money in the world can ever equal the love and joy my family brings me. We have our differences, but we know that without each other we wouldn't have a foundation to stand on.

When there were transportation issues, doctor visits, meetings, and job interviews, there was my family. They have also been there to scold me when I needed it. They remind me that I am not a quitter and once I start something to finish it. The one thing my whole family gives me that I cherish the most is that they don't pity me or feel sorry for me. They accept me the way I am, and that's all I want, to be accepted as I am.

Editor's note: We were thrilled when Gerald "Jerry" Herrera volunteered to write an article about his experience growing up with low vision. After graduating from high school, Jerry lived two years in a dorm while attending Texas State Technical Institute in Waco. There he received his associate's degree in computer science. Currently, Jerry works in the Information Services Division of the Texas Department of Insurance. He can be contacted at home at 229 West Austin Street, Luling, TX 787648.

Winter 99 Table of Contents

By Joanne Green, Parent
Reprinted with written permission (c) 1996 Wide Smiles

Editor's note: This document is from Wide Smiles Website < www.widesmiles.org >. On this website you will find several files about cleft lip/palate and its complications such as feeding issues. Although many of you may not be concerned about cleft lip or palate, the author shares some good strategies that could be helpful to any parent of a child with disabilities. Send your comments by email: .

You take your baby with you everywhere. Why? Because you are a proud parent. And because your baby is a part of your life and because you cannot imagine doing otherwise. Then, when you are standing in line at a grocery store, or while you shop for baby clothes at the department store, or while you sit at a park bench to rest your feet, or at any other time when you least expect it, a stranger walks up to you and says, "What on earth happened to your baby's lip? What did you do to cause that?" It's painful. It cuts to the core of our existence---our very heart. There is so much in that one question---so much rejection, repulsion and blame. And so much of it unfair.

How do you respond? It hits you so fast and so hard, it is difficult to respond at all. Your cheeks burn. Your eyes well up with tears. You are rendered speechless and you incredibly find yourself apologizing. Then, long after the stranger has left to go on back to her own life, you think of a dozen better things you could have said. And you go on after that thinking about how you could have handled the situation differently.

It is a normal scenario. We have various response knee-jerk reactions. But in the final analysis, what does it matter how we reacted? We would never see that stranger again. The stranger would forget the experience in a week, if not sooner. But there is one person present who will remember the experience---at least on some level for a very long time to come---your child.

How you respond to a situation involving your child's cleft and the perception of it by others, helps to define the cleft in your child's mind. If you respond angrily, lashing back at the rude intruder, it may vent some of your frustration, and it may teach the stranger to be more careful the next time; but it will teach your child that the cleft is a threat and a target for ridicule.

"How dare you say such a thing!?" says to your baby, "We have been attacked. It's time now to assume our defensive posture." And the most logical conclusion your naturally egocentric child can draw is, "If there were no cleft, my mommy would not be mad---if there were no me, my mommy would not be mad."

You might instead deny the existence of the cleft altogether. "There's nothing wrong with him. Please do not ask such rude questions." But your child knows there is something "wrong". He knows he has a cleft---or a cleft scar. Even very young children are aware of differences between themselves and others. By denying the fact of the cleft---or its importance in your child's life - then he assumes that the cleft is something to be hidden and kept secret. The only reason why that makes sense to him is that the cleft---therefore the child---is a source of embarrassment to the parent.

Or you might cry. It's hard not to cry when your child has been attacked. It's hard not to feel the pain of someone's accusation---especially when you know it is untrue, but a part of you still feels that it's not. All of your old pain comes flooding back, along with the new pain of knowing your child will feel the pain, too. If you cry, you usually wait to cry later. The stranger is gone. She does not know how much she hurt you. But your child is still there. Your child sees your pain, and your child senses that the pain has something to do with him. The message? "The cleft is a tragedy. I make my mommy cry."

Each of the above reactions is natural and understandable. But each one teaches something negative to your child.

Empirical research has strongly supported the notion that a parent's attitude toward a child's birth defect is the single strongest indicator as to how well the child will adjust. Parents who had healthy attitudes toward their child's cleft had children with a strong positive sense of self. It is no coincidence. If you convince your child that you love him, then he sees himself as lovable. Even if your love is unconditional. If you cannot deal with any aspect of your child, then that aspect becomes his millstone.

When confronted with a rude comment or remark, the answer you give to the person speaking to you is not nearly as important as the message you give your child. Answer calmly, assuredly, maybe even educationally. Tell the person who made the comment, "My son was born with a cleft lip and palate. Nobody really understands what causes a cleft, but they do know that it is not caused by the mother. It just happened and we are dealing with the reconstructive process."

That answer tells your child that he is a child first, and that the cleft he was born with does not cloud her perception of him as a person. The cleft is a simple fact of your life---something you can handle while you love your child.

Or you may choose to use humor. "What? Something wrong? I don't believe it! How could I not have noticed this before?!" And the rude person gets the message ("This is none of your business, really.") and mom and child do a couple of mental Hi-Fives in the air. Your child sees you as the conquering hero---the one in his corner, and adequate to the task. His champion. And you laugh together.

Most of the time strangers who approach are not trying to make us feel bad. They simply lack the social grace it takes to tell the difference between things that are their business and things that are not. And, having decided that they have some kind of right to another person's personal information, they fail to stop and consider the impact their harsh words will have on you or your child.

That person is not important. Your child is. React for your child.

Winter 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Debra S. Gleason, Parent
Reprinted with permission from Band-Aides and Blackboards

Editor's note: Debra Gleason wants feedback from readers. Please email her at .

Does your child have a disability? My daughter does, and here's what I've learned, and here's what she taught me. I learned that I didn't lose the person in my life, only the idea of who that person would be. This understanding made it easier to accept my little girl in the limited body that she was born with. I know that some moms don't get to breast-feed and that some parents don't get to watch their babies crawl or stand or walk. I know how hard that is.

My Maura was a preemie and I was scared because she was so tiny. There were a lot of things that, as her parents, we had to get beyond. I think that's always the case when you end up with a `different' child. For instance, it wasn't always easy to pay attention to the gifts she brought to us. Differences can be painfully apparent, and the parental guilt sometimes all consuming. Both of these are tremendous barriers to be crossed to reach a state of peace and acceptance.

I learned not to let health professionals give us all the negatives. Never accept words and actions that communicate the word `never'. If they say "never", I say go somewhere else.

As daunting as it might appear, the Internet is your friend. Though your searching for information and family support can be time consuming, the effort is worth it. Learn how to evaluate the wealth of the information you find on the web, traditional and nontraditional, to go about deciding how valid the sources are that you discover. Find yourself a support group too; some type of personal therapy may prove to be invaluable. Grief therapy helped me, as did the support resources on the Internet. There are many electronic support groups out there, and they make a tremendous difference to so many parents in our situations.

Maura deserves the best future we can provide her. I'm sure you feel the same about your child. It helps to know that you've tried even if something doesn't work that you attempt. You've tried because you care, and children know that. They know that you're doing the best you can.

It's easy to be overwhelmed when your child's needs seem so enormous. I learned through it all that it's NOT helpful to run yourself ragged. In order to be an effective parent, I found out that I needed to nurture myself. You just can't give when you don't have the resources inside that you need.

Thanks for `listening' to the wisdom I've acquired in this adventure of parenting a child with a disability. I hope that you'll share what you've learned too. All the best&

Winter 99 Table of Contents
Versión Español de este artículo (Spanish Version)

By Dick Sobsey, Parent
Reprinted with permission from Band-Aides and Blackboards

Editor's note: At a recent parent workshop the issue of handling public reactions to your child with disabilities came up. "Debbie's Lesson to Parents", "A Father Copes" and "Reaction Time" speak to this issue. These articles are on the websites Band-Aides and Blackboards <http://funrsc.fairfield.edu/~jfleitas/sitemap.html> and Wide Smiles <www.widesmiles.org> which have useful articles from parents of children with chronic illness and a variety of disabilities. These parents offer insights and strategies they have used in situations common to all parents of children with special needs. Another resource is Children with Visual Impairments: A Parent's Guide edited by M. Cay Holbrook, from Woodbine House. In Chapter 5, Beth Langley suggests parents use a variety of strategies to deal with the public depending on the situation and their frame of mind.

As the father of a child with Glycogen Storage Disease 20 years ago and the father of a child with severe mental disabilities, asthma, and a list of other special needs today, I've spent a lot of time thinking about how I've coped with the reactions of others, and I thought that some of my ponderings might be of value to you.

There are two kinds of negatives that parents have to address: The overt ones are the simple ones. There are other more covert ones, though, that are the subtle messages often received from the people who we love and trust or the professionals who are supposed to be helping us. There are no easy answers, but here are some things I found helpful in coping with `problem statements'. There are three strategies that helped me when people were being negative:  

  1. Education: Tell people the truth. Let them know that they are not being helpful and more importantly, let them know what would be more helpful.
  2. Escape and avoidance: If you can't change peoples' minds, try avoiding them. Perfectly healthy and, in some cases, easy to do.
  3. Fight: This should be a last resort. It takes too much energy, requires negativity, and is less likely to be successful than education or avoidance. However, sometimes there is little choice...(e.g., your child's school is giving you a hard time and there are no good alternatives).

Recognize that not all apparent support is helpful. Don't let anyone alienate you from your child. I needed support FOR my relationship with my child, not support AWAY from him. Things like telling me that people felt sorry for me, overemphasizing stress, etc. did not support me in my relationship with my children. Many parents are told implicitly or even explicitly, "Don't get too attached to this child or it will break your heart." This is a mistake. It is better to allow some heartbreak than to turn a heart to stone. Attachment minimizes stress. Parents of kids with intensive needs can handle a lot of demands that they see as labors of love.

Seek the network that really supports the relationship you have with your child. Often, this means other parents of kids with special needs. Sometimes it may even include a professional who cherishes your child.

Recognize the positive aspects of your child and his or her contribution to your family. Our five-year-old cannot talk and his motor skills are at about a one-year level. There is a long list of things that he can't do. We've spent some rough times, but everyone in our family can list many ways that he has made our life better and our family stronger.

Milton Seligman who has done great research on families wrote a personal perspective for the book Uncommon Fathers (1995) [D. Mayer (ed), Bethesda, MD: Woodbine House]. He says: "My suspicion is that the general public believes that a child with a disability creates enormous tensions within the family, eventually culminating in divorce. On the other hand, parents who speak and write about their experience with their child project the notion that a child with a disability marshals constructive forces within the family system and actually brings the family closer together." (p. 179)

One of the most poignant essays in the book is David Seerman's "Loneliness of a long distance daddy" Seerman writes about how he and his family decided to place their daughter Cassie outside their home, thinking the family would be better off...and only realized what she had contributed after she was gone. He concludes the poignant narrative of his loss with these words. "My family didn't need to be fixed. It was never broken."

Never let anyone rob you of hope. Research shows that professional caregivers consistently underestimate the quality of life of people with disabilities and often provide overly negative prognoses. They are too worried about giving people "false hope" and so they casually give them a dose of "false despair". Parents need to know that hope doesn't always mean "a cure".

Sometimes it is more important to be a parent than a paraprofessional. Parents are expected to be physical therapists, nurses, behavior modifiers, communication therapists and so on. Sometimes paid professionals tell us, "You don't need us; you know how to do all this stuff." Sometimes we have to tell them, "I'm sorry but we're too busy being parents to do all these other jobs."

The unique role of parents must be recognized, respected, and cultivated. Parents need to be parents first, and being good parents is the most important job in the world...

Otoño 1998 Tabula de Contenido
(Versión Inglesa)

Desde el pasado mes de julio más adolescentes en Texas han podido clasificar para recibir atención de salud por medio de Medicaid. El máximo ingreso familiar que Medicaid estipulaba para las familias de adolescentes ha cambiado. Ahora algunos adolescentes que no han cumplido los 19 años y que antes no clasificaban para este servicio posiblemente ya pueden hacerlo.

El año pasado el Congreso pasó leyes que asisten a los estados a ofrecer atención de salud a los niños de familias de bajos ingresos que no tienen seguro de salud. Cada estado formula su propio plan de seguro de salud para niños. La primera parte del plan de Texas espera amparar con Medicare a más adolescentes, de 15 a 18 años de edad, cuyas familias tienen un ingreso inferior al 100% del nivel de pobreza estipulado por las leyes federales. Los adolescentes menores de 15 años ya clasificaban a este nivel de ingresos familiares. Las familias como quiera todavía necesitan llenar otros requisitos de Medicare, tal como el límite de bienes.

Por favor ayude a estos adolescentes a aprovechar esta oportunidad para recibir cobertura de salud (exámenes médicos y dentales, equipo y materiales, medicamentos de receta, etc.) Llame al Departamento de Servicios Humanos del Estado de Texas (TDHS) para más información sobre la Cobertura para Adolescentes.

Otoño 1998 Tabula de Contenido
English version of this article (Versión Inglesa)

Por: Kate Moss, Especialista en Apoyo a Familias, Servicios Sordociegos TSBVI

Desde hace tiempo las familias me han comunicado sus deseos de ponerse en contacto con otras familias. Me han llamado muchos padres que desean conversar con otro padre cuyo hijo padece de un síndrome o padecimiento especial. Quizá su hijo o hija quiere tener un amiguito con quien tener correspondencia o son abueltios que desean conocer a otros abuelitos. Los talleres de trabajo y los retiros para padres son lugares fabulosos para desarrollar este tipo de relaciones. Yo también sé que los artículos publicados en VER/Oír han sido de gran ayuda para que muchos puedan conectar. El Cuarto de Discusión Familiar establecido por TSBVI en el Internet ofrece otra opción para que estos individuos puedan ponerse en comunicación.

Más y más familias están conectándose al Internet desde su casa, empleo o escuela. Algunos usan las bibliotecas públicas para "navegar la Red". En la escuela muchos estudiantes ciegos o sordociegos están aprendiendo las habilidades para usar la computadora y conectarse a la Red. Así que, hemos decidido añadir un espacio en el Sitio TSBVI en la red para que los miembros de las familias puedan ponerse en comunicación. Este espacio es una tabla boletín, no es una sala de conversación. Esto significa que ustedes pueden poner mensajes para que otras personas los lean, y ellas pueden contestarle si ellas desean. Si usted quiere tener una conversación directa puede intercambiar con ellos su dirección Email y después tener conversaciones con ellos. Eventualmente, si este servicio es popular, posiblemente añadiremos sitios para grupos específicos. Algunos sitios que han sido propuestos por los padres son: Síndrome Usher, Lebers Congenital Amaurosis, Hermanitos Adolescentes con Incapacidades de la Vista o Sorderaceguera. Aceptamos sus ideas y sugerencias. Déjenos saber.

El Cuarto de Discusión Familiar debe estar listo para comenzar en diciembre de 1998, justo a tiempo para la Navidad. Conéctese, visítelo y ponga un mensaje. Simplemente escriba < www.tsbvi.edu > haga "click" en "Family Discussion Room" y siga las instrucciones.

Otoño de 1998 Tabula de Contenido

Publicado con permiso de: El Proyecto de Apoyo para Hermanitos

El Proyecto Apoyo para Hermanos es un programa nacional cuyo enfoque es ayudar a los hermanos y hermanas de niños que padecen de problemas de salud y desarrollo. Su principal objetivo es incrementar la disponibilidad de programas de apoyo y educación para los hermanos y hermanas de personas que padecen de problemas especiales de salud y desarrollo.

OBJETIVOS DEL PROYECTO

Para lograr nuestro objetivo el personal del proyecto:

  • desarrolla materiales para concientizar (Ej: planes de estudio, libros para niños, sitios en la Red, noticieros) para los padres, los proveedores de servicios y hermanitos y hermanitas);
  • conduce talleres de trabajo para los padres y los proveedores de servicios en los 50 estados del pais, en los que tratan asuntos a los que se enfrentan los hermanitos y hermanitas de niños incapacitados, también para cómo comenzar un Sibshop;
  • provee asistencia técnica a esos que desean comenzar un Sibshop en su localidad;
  • mantiene una base de datos de más de 200 Sibshops y otros programas para hermanitos en los Estados Unidos;
  • en el área de Seattle conduce Sibshops para los hermanitos y hermanitas de niños que padecen de problemas especiales de salud y desarrollo mental y
  • evalúa los efectos de los programas para hermanitos y hermanitas.

MATERIALES

Entre los materiales que ha creado el Proyecto de Apoyo para Hermanos se encuentran:

  • Sibshops: Workshops for brothers and sisters of children with special needs (Talleres de trabajo para hermanitos de niños con necesidades especiales), 1994, por D. J. Meyer y Patricia F. Vadasy (Baltimore: Paul H. Brookes). Para ordenar llame: (800) 638-3775. También en las librerías Barnes y Noble.
  • Living with a brother or sister with special needs; A book for sibs (Viviendo con un hermano o hermana que tiene necesidades especiales: Un libro para hermanitos), 1996, (2a edición, revisado y ampliado) por Donald Meyer y Patricia Vadasy (Seattle: Imprenta de la Universidad de Washington). Para ordenar llame al 1-800-441-4115. También en las librerías Barnes y Noble.
  • Uncommon Fathers: Reflections on raising a child with a disability (Padres Especiales: Criando a un hijo incapacitado). 1995, Donald Meyer (Ed.) (Bethesda, Maryland: Woodbine House). Para ordenar llame al (800) 843-7323. También en las librerías Barnes y Noble.
  • Views from our Shoes: Growing up with a brother or sister with special needs (El panorama desde nuestro lugar: Creciendo con un hermanito que tiene necesidades especiales) (1997, por Donald Meyer (Ed.) (Bethesda, Maryland: Woodbine House). Para ordenar llame al (800) 843-7323. También en las librerías Barnes y Noble.
  • The National Association of Sibling Programs (NASP) Newsletter (Noticiero de la Asociación Nacional de Programas para Hermanitos) Proyecto de Ayuda para Hermanos CL-09, Hospital y Centro Médico de Niños, 4800 Sand Point Way, NE, Seattle, WA 98105.
  • El SibNet y SibKids Listservs, tablas de boletines estilo Email para hermanitos y hermanitas de todas las edades y otros interesados en el bienestar de los hermanitos.

Para inscribirse gratis visite el Sitio del Proyecto Apoyo para Hermanos o comuníquese con el Proyecto. Este Proyecto recibe financiamiento del Departamento de Educación de los Estados Unidos, Oficina de Educación Especial Programa de Capacitación de Personal. Para más informes sobre los Sibshops y el Proyecto llame a:

Donald Meyer, Director, El Proyecto de Apoyo para Hermanos
Hospital y Centro Médico de Niños, P. O. Box 5371, CL-09, Seattle, WA 98105
Teléfono: (206) 368-4911. Fax: (206) 368-4816. Email:
< http://www.chmc.org/departmt/sibsupp/ >

¡PRESENTANDO SIB TO SIB (HERMANO A HERMANO)!

¡Hermano a hermano! (Sib to Sib) es un noticiero para hermanitos y hermanitas. Usted puede suscribirse y en el presente la suscripción es ¡gratis! No puede desear una mejor oferta, ¿verdad? Para suscribirse escriba a:

Andrew Lanier, Editor de ¡Sib to Sib!
c/o Rhoda Berlin
Little Red School House
P. O. Box 992
Lynnwood, WA 9804

Es un placer presentar la versión Red del noticiero ¡Sib to Sib! Para conectarse: <http://www.chmc.org/departmt/sibsupp/newsletters.htm> Escrito, editado y publicado por nuestros amigos de Sibshop en Lynnwood, Washington, ¡Sib to Sib! publica artículos escritos por hermanitos y hermanitas de niños con necesidades especiales.


Otoño 1998 Tabula de Contenido
English version of this article (Versión Inglesa)

www.our-kids.org

Publicado con permiso

Our-Kids es una "familia" de padres, cuidadores y otros que trabajan con niños que padecen de incapacidades físicas, mentales y/o retraso en su desarrollo. Este sitio en la Red se llama "Our-Kids". El nombre no exactamente descriptivo porque hemos querido evitar cualquier inferencia que insinuara que nuestros niños son diferentes a lo que en realidad son: maravillosas personitas en nuestra vida.

El Sitio Our-Kids consiste de más de 800 personas representando a niños que padecen de una gran vaimpairedad de padecimientos; desde retrasos en su desarrollo que no han podido ser diagnosticados hasta padecimientos de integración de los sentidos, desde parálisis cerebral hasta enfermedades genéticas raras. Más de 35 países están representados.

Ahí podemos hablar de los logros y derrotas de nuestros niños, sabiendo que en la audiencia hay a otros que saben por lo que estamos pasando. También podemos darnos una idea de cómo otros manejan sus problemas específicos y sus dificultades para alimentar y enseñar, sus recursos médicos, técnicas y equipo, y podemos comentar los problemas de nuestros niños con sus amigos y familiares o simplemente cómo la estamos pasando. Algunos profesionales, organizaciones y terapeutas también supervisan y contribuyen al Sitio. Este Sitio no es para diseminar ideales religiosos o políticos, ni es un lugar para debatir a favor o en contra del aborto o la eutanasia. De hecho, esta lista no es para debatir ningún punto de vista. Su único propósito es ofrecer apoyo y compartir información que nos sea útil, a nosotros y a nuestros niños.

Mi nombre es Randy y yo represento a mi hijo Sean de 6 años que padece de parálisis cerebral severa y cuadriplejía espástica, el resultado de una extracción severa de muco. Sean no habla y no puede moverse. Sin embargo él está muy consciente de su medioambiente, tiene una sonrisa maravillosa y un "gruñido" que con pericia usa para manipular a su papito.

La persona que estableció el Sitio en enero es Ashley, mamá de Austin quien fue diagnosticado Síndrome Angleman por medio de un análisis de cromosomas.

Algunos de los niños representados en el Sitio padecen de problemas más serios que los de nuestros hijos, otros no. Algunos están más adelantados en su desarrollo y edad, mientras que otros no. Pero con la ayuda de todos los que participan en el Sitio cada uno de nosotros y nuestros niños se ha beneficiado en las áreas de apoyo y conocimiento. Por favor visítenos.

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

Reprinted with permission from the Sibling Support Project

The Sibling Support Project is a national program dedicated to the interests of brothers and sisters of people with special health and developmental needs. The Project's primary goal is to increase the availability of peer support and education programs for brothers and sisters of people with special health and developmental needs.

Goals of the Sibling support project

To accomplish this goal, project staff:

  • create awareness materials (e.g., curricula, children's books, websites, newsletters) for parents, service providers, and brothers and sisters;
  • conduct workshops in each of the 50 states for parents and providers on the life-long issues facing brothers and sisters and how to start a Sibshop;
  • provide technical assistance to those starting a local Sibshop;
  • maintain a database of over 200 Sibshops and other sibling programs across the United States;
  • conduct Sibshops for Seattle-area brothers and sisters of children with special health and develop mental needs and
  • evaluate the effects of programs for siblings.

Materials

Materials created by Sibling Support Project staff include:

Sibshops: Workshops for brothers and sisters of children with special needs, 1994, by Donald J. Meyer and Patricia F. Vadasy (Baltimore: Paul H. Brookes). To order call (800) 638-3775. Also available at Barnes and Noble Bookstores.

Living with a brother or sister with special needs: A book for sibs, 1996, (2nd edition, revised and expanded) by Donald Meyer and Patricia Vadasy (Seattle: University of Washington Press). To order call 1-800-441-4115. Also available at Barnes and Noble Bookstores.

Uncommon Fathers: Reflections on raising a child with a disability, 1995, Donald Meyer (ed.). (Bethesda, Maryland: Woodbine House). To order, call (800) 843-7323. Also available from Barnes and Noble bookstores.

Views from our Shoes: Growing up with a brother or sister with special needs, 1997, by Donald Meyer (ed.) (Bethesda, Maryland: Woodbine House). To order, call (800) 843-7323. Also available from Barnes and Noble bookstores.

The National Association of Sibling Programs (NASP) Newsletter. The Sibling Support Project, CL-09, Children's Hospital and Medical Center, 4800 Sand Point Way, NE Seattle, WA 98105.

Sibling Support Project Web Page: <http://www.chmc.org/departmt/sibsupp>.

The SibNet and SibKids Listservs, email-type bulletin boards for brothers and sisters of all ages and others interested in the well-being of siblings.

For a free subscription, visit the Sibling Support Project Web Page or contact the Sibling Support Project. The Sibling Support Project receives funding from the U.S. Department of Education, Office of Special Education, Personnel Preparation Program. For more information about Sibshops and the Sibling Support Project, contact:

Donald Meyer, Director, The Sibling Support Project
Children's Hospital and Medical Center
PO Box 5371, CL-09
Seattle, WA 98105
phone: (206) 368-4911
fax: (206) 368-4816
email:

<http://www.chmc.org/departmt/sibsupp/>

Presenting Sib to Sib!

Sib to Sib! is a newsletter for brothers and sisters. Should you wish, you can subscribe to Sib to Sib!. At the moment, the subscription to Sib to Sib! is free--and it doesn't get much better than that, eh? To subscribe, write:

Andrew Lanier, Sib to Sib! Editor
c/o Rhoda Berlin
Little Red School House
P.O. Box 992
Lynnwood, WA 9804

It is a pleasure to present a Web version of the Sib to Sib! newsletter! To get to the Sib to Sib! newsletter go to <http://www.chmc.org/departmt/sibsupp/newsletters.htm>. Written, edited, and published by our Sibshop friends in Lynnwood, Washington, Sib to Sib! features articles written for and by brothers and sisters of kids with special needs.

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Otoño 1998 Tabula de Contenido
English version of this article (Versión Inglesa)

Por: Kenyetta Kinney, Estudiante, Coolidge, Texas

Nota del editor: Ann Rash, Especialista en Educación y Programas de Servicios VI, editora de VER/Oír presentó este artículo escrito el año pasado por Kenyetta, alumna de una clase de 2°/3er grado. El problema de su vista es secundario, su diagnóstico primario es MS, esclerosis múltiple. Apreciamos el deseo de Kenyetta de compartir sus sentimientos con los lectores de VER/Oír.

"Hola", mi nombre es Kenyetta Kinney. Estoy cursando el tercer grado en la escuela Primaria Coolidge en Coolige, Texas. Estoy inscrita en una salón de clases de estudiantes de 2°/3er grado y también tomo clases especiales en lectura y matemáticas. Asisto a clases de educación física, música y computación. También voy a la cafetería a comer mi lonche, al recreo y algunas veces a las asambleas de estudiantes. Me encanta la escuela.

Algunas veces tengo días malos y días no muy buenos. Esto es porque a veces no puedo ver muy bien. Hay personas que vienen a visitarme. Ellas me ayudan y me enseñan a moverme sin peligro.

Cuando tengo un día bueno es cuando puedo ver muy bien y puedo transportarme de un lugar a otro yo misma. Cuando tengo un día no muy bueno necesito que alguien me ayude a transportarme sin peligro. Cuando tengo un día malo uso a un guía con vista para que me ayude a moverme de un lado a otro. Usar un guía con vista es cuando tienes que coger el brazo de otra persona para poder moverte de un lugar a otro.

En el aula de clases yo uso todas las cosas que me pueden ayudar, de acuerdo al día que estoy teniendo. En un día bueno las maestras magnifican mis tareas para hacerlas más grandes. En los días no tan buenos yo uso un lente de aumento y mi CCTV. El CCTV magnifica el trabajo que tengo que hacer y lo puedo ver en la pantalla de la televisión. En mis días malos mis maestras me ayudan a practicar cómo transportarme sin peligros y guían mi trabajo en lugar de tener que escribirlo. Yo trabajo muy duro todos los días.

Tomo medicina todas las mañanas y en las noches, y me tienen que poner una inyección cada viernes. La medicina sabe feo, pero la inyección no duele. No me gusta tomar la medicina, pero el doctor dice que la tengo que tomar. Tenemos que ir hasta Fort Worth para ver a mi doctor. Mi mamá me lleva y de regreso a casa siempre nos paramos a comprar pollo. Para mis ojos tengo que ir a otro doctor. El tiene su consultorio en Corsicana. Creo que en algunas ocasiones tengo hasta 40 doctores.

Yo tengo un montón de maestras especiales que vienen y trabajan conmigo. Tomo clases de lenguaje con la Sra. Tooke. Ella me lee libros y platicamos. Mary Ann y la Sra. Bunch me vienen a ver. Ellas me enseñan cómo palpar cosas y cómo escuchar. Tonya y Rhonda vienen y trabajan conmigo, me están enseñando a usar un guía con vista y a pedir ayuda cuando la necesito. Debra viene a mi casa y me va a enseñar cómo cocinar espagueti. Ella también me trajo un reloj parlante para que me diga la hora. Algunas veces vienen gentes a visitarme solamente por un día. Ellas me observan y trabajan conmigo ese día. Me gusta cuando vienen a visitarme.

En realidad yo soy como cualquier otra persona. Sólo tengo dificultad para ver algunas veces, y es cuando necesito alguna ayuda. La mayoría de los días disfruto estar en mi salón de clases. Algunas veces pienso que todos se mortifican mucho por mí, pero sé que lo hacen porque me aman y desean cuidarme. A veces toda esa atención me molesta y me da vergüenza. Pero está bien. Yo tengo un montón de trabajo. Soy una niña, una dama, una persona, una hermanita mayor, una hija, una estudiante y una chiquilla.... lo único diferente es que a veces no puedo ver bien.