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by Sareth Garcia, Parent, Edinburg, Texas

On October 11, 1996, my son Omar (who is visually impaired), his grandparents and I drove in a car to the city of Meridian, Texas. We were very happy because we knew we would see people we knew at the camp. We were also eager to make new friendships. However, this delight was short-lived. As we passed the city of Pleasanton, close to San Antonio, my car's brakes went out and I could not move it to either side; nor would it accelerate. Our car was stranded on the side of the road. Immediately, we were fortunate to have a person take us to the next gasoline station nearby where there was a mechanic. There we spent 4 hours. They could not fix the car, but we were lucky to find a car rental agency that was able to pick us at the mechanic shop. We rented a van, all headed back to San Antonio, and immediately returned for our things. So great was the urgency to arrive in Meridian that we were willing to leave the car on the side of the road, stranded, (even though it was securely locked and parked) for the initial reason we set out.

At 10:00 p.m. we arrived in New Braunfels so we stopped to eat a hamburger, but my mother was preoccupied about the car. For this reason, we decided to call my sister who lives in McAllen. We explained what had happened and asked if her husband, who is a mechanic, could pick us up in a wrecker. They were distressed because they did not want the car to be stranded as it could easily be stolen.

I had decided to continue the trip, but something inside of me was telling me to return; so we did. I remember we accelerated up to 75 on the speedometer so we arrived quickly in San Antonio. When we arrived to where the car was, we decided to stay to wait for my sister since we were expecting to meet her, at the most three hours later. I was anxious to start the trip all over again even if it would be at 3:00 a.m. As we waited it seemed that there were fewer cars passing by. At 2:00 a.m. a policeman arrived and asked if we were okay. We said we were; so he left. We continued to wait, but since it was cold my father decided to go to our car and bring a blanket. To our surprise, one of the windows was completely broken out! Someone had indeed tried to steal the car! We were very afraid from that point, but we were hoping that my sister would arrive. At that point, I became very sad because I was very eager to arrive. Well, my sister never arrived so we finally decided to call for a wrecker and leave the car at the next gas station.

At 11:00 a.m., we started the trip all over. Arriving at 4:00 p.m., it was a good feeling to be welcomed. They immediately showed us to our cabin and the dining room. There I was separated from my little Omar. Let me tell you that at this camp, they take good care of the children and their siblings. Believe me when I say that I had never left Omar except with his grandparents. But the camp staff gained my confidence and trust so that he did not sleep with me for two nights! This was a great break for me.

Now let me tell you about the camp. The same night we arrived, we were immediately directed to the General Membership Business Meeting where the Nominees for Board Positions were discussed. After that, there was an auction at 9:00 p.m which I did not attend, but my mother did. By this point, my legs were hurting from tiredness since I was not able to sleep one night and drove for almost two days.

The next day, we had breakfast and continued with the agenda. That morning a man whose name I do not remember, moved me with the songs he interpreted. So beautiful was the writing that I could not contain my emotions and I cried. The song made me think of my son. I was happy that I was not the only one moved, but I felt the need to calm myself as I felt I was being watched by some parents. The next session was given by an excellent person who is Kate Moss, with Gwen Solis. There I learned something new: "We as parents need to be aware of new developments that may benefit our child." I also remember that she said the following:

  1. I need to know the rights I have as a parent.
  2. Always be aware of the ARD.
  3. Take notes of everything that will affect my son.
  4. Take and make copies of the reports, including the recommendations I make as a mother.
  5. Verify what you sign, and be sure you receive a copy of it.
  6. There are places that can help improve the quality of life for our children:
    Texas Department of Assistive and Rehabilitative Services (formerly known as Texas Commision for the Blind) 1-800-252-5204
    and Texas School for the Blind and Visually Impaired Outreach 1-800-TSB-KARE

We finally went to eat and packed our things. We left at 1:00 p.m. from Meridian, Texas. We arrived in San Antonio at about 7:00 p.m. and spent the night since it was Sunday and the car rental agency was closed. The next day, we decided to see the Alamo and the children's museum. None of us really wanted to go because we did not think that Omar would enjoy it. To our surprise, Omar wanted to be in every corner of the museum so that we were late in leaving 3 hours. From there we went on the Riverwalk and ate at the Plaza. I arrived in Edinburg very late and very tired, but the experience was unforgettable.

Very special thanks to Rose Shotts and to Kate Moss for giving me the opportunity to return to the camp. I wish that the parents that have not attended the camp, because they think they already know all there is to know or because they think they will be bored, will realize the opportunity their child is missing to be with other children. And for parents, there is the opportunity to learn something that will be beneficial to your child. I hope that you will take advantage of the next opportunity in October. Hasta la vista!

Editor's Note: If Sareth's letter doesn't inspire you to make an effort to attend the DBMAT Annual Family Conference, I'm not sure what will. This is the only statewide family organization for parents whose children are deafblind or visually impaired with additional disabilities. In its twenty-five years of existence, the parents in this organization have been instrumental in bringing about services to individuals with deafblindness in Texas. Like most organizations that have been around this long, they need more involvement from new members. Please go to DBMAT and get involved in the business meeting. This is your organization. Keep it growing!

Deaf-Blind Multihandicapped Association of Texas (DBMAT)
announces its
25th Annual Family Conference
October 10 - 12, 1997
Camp John Marc, Meridian, TX

For information or
to request a registration form,
contact
DBMAT Headquarters
at (972) 287-1904

by Kate Moss, TSBVI Outreach

 Every parent's concern: WHAT WILL HAPPEN TO MY CHILD IF I AM NOT ABLE TO CARE FOR HIM? The challenge of planning for a child's future beyond the life of the parents can seem overwhelming. Even when the family has other children or family who are willing to take over the responsibility from the parents, problems may arise for two reasons:

1. They are not clear about the wishes of the parents and do not have the historical knowledge about the child to feel comfortable with the decisions they are required to make.

2. Laws and services change over time and the plans made by the parents may need to be revised for the child to receive maximum benefits from the system.

Preparing for the point in time when you, the parents, are unable to make critical decisions for your dependent child is a very complicated undertaking. You draw up a Will. You may also work with an accountant to see that a Trust is set up which will not have a negative impact on the services your child is entitled to receive from the government. A Will or a Trust will not necessarily ensure that your wishes for your child are always considered. A Letter of Intent is a way to have your voice be heard beyond the time when you are no longer with your child.

A Letter of Intent is a document that you prepare to help the guardians, trustees and the courts interpret your hopes and desires for your child. It is not a formal "legal" document, but the courts will look to it for guidance in understanding your child and your wishes. The courts tend to favor the family's wishes as long as they are not illegal or immoral.

Because you are the one constant in your child's life, you can share information with professionals and others that can improve the quality of their work with your child. It will help them understand what works for your child and what does not work. It will also save you and your child's future guardians time. Think of how often you have to repeat the same information to various service providers. Providing them with a single document that contained most of the information they needed would be very helpful.

It is important to note that writing a Letter of Intent forces you to discuss (often for the first time) the many concerns you have about your child's disabilities. This can be an emotional if not a painful experience. Be aware of this and plan to work on the letter at a point in time when you are not feeling overwhelmed by your life. You may also find that you need to work on small portions of the letter over time or have some help in gathering portions of the document.

This Letter of Intent is not a traditional letter. You do not write it and forget it. It is a living document that should be updated and added to on a regular basis throughout your life. You may want to set aside an anniversary date to review your letter every year, and make needed changes. At other times events will require the letter to be changed immediately, such as noting a bad reaction to a specific medication. When you need to make changes you may only need to rewrite that portion of the letter. Placing the information on a computer for easy updates is one way to keep the document current. If you hand write or type your letter, organize it so that information which may need to be frequently updated is on a separate page from the information (such as family history, social security number, etc.) that won't ever change. You may also separate information that can easily be shared (educational history, personal preferences, etc.) from more sensitive information (cash income, life insurance, etc.)

Two books that you might find helpful in the development of this letter are Planning for the Future by L. Mark Russell, Anrnold E. Grant, Suzanne M. Joseph, and Richard W. Fee and The Life Planning Workbook by L. Mark Russell and Arnold E. Grant. The first book provides detailed information on topics such as The Life Plan, Letter of Intent, Advocacy and Guardianship, Planning for Your Child’s Financial Future, Basic Estate Planning, Living Trusts, Living Wills and Durable Power of Attorney, Reducing Estate Tax and other topics. The Life Planning Workbook provides forms, charts, and other information to help you collect information to share with others. However, the information that follows should be adequate to get you started.

Whether you write it out in long hand, use a typewriter, or use a computer be sure to sign it and date it. Place it with your other important papers and let someone who can be trusted know of its existence.

Don't worry if you are not a skilled writer. This is not an English paper! This is a way to let people know what you want for your child, and what you are particularly concerned about for his/her future.

What follows are the general guidelines for writing a Letter of Intent. This is taken from an article published by the organization, Estate Planning for The Disabled.

  • The letter can be addressed to "TO WHOM IT MAY CONCERN" or you may want to make it more personal by addressing it directly to your child. Depending on the severity of your child's disability, this letter may be a continuing form of communication after you are gone. It will be Mom and Dad's special letter.
  • The letter can be typed or handwritten.
  • Each letter should cover the key areas of your child's life. You should describe what has happened thus far and express your desires for the future. The following topics should help you organize your thoughts:
    1. Family History
      • where and when you were born
      • where and when you were raised
      • where and when you were married
      • something special about brothers, sisters, aunts, uncles, grandparents, etc.
      • special friends and relatives that your child knows and likes
      • description of your child's birth, when, where, your feelings, etc.
    2. General Overview
      • brief overview of your child's life to date andyour general feelings about the future
    3. Education
      • summary of educational experiences and desires for future education
        • regular classes, special classes, special schools, etc.
        • mainstreaming, etc.
        • types of educational emphasis, i.e. vocational, academic, total communication, etc.
        • name specific programs, schools, teachers, if you know them
    4. Employment
      • types of work he or she might enjoy
      • open employment with supervision, sheltered workshop, activitiy center, etc.
      • companies that you are aware of that may provide employment in your community
    5. Residential Environment (in the future)
      • live with relatives, specify relatives
      • if not relatives or if relatives pass away, your other options, i.e. group home in the same community, institution
      • specify size of group home or institution
      • describe best living arrangements --singleroom, etc.
    6. Social Environment
      • mention the types of social activities your child enjoys, i.e. sports, dances, movies, etc.
      • should your child have personal spending money and how should he or she spend it
      • mention favorite foods, eating habits, etc.
      • does your child usually have annual vacations with relatives, friends, church or charitable groups?
    7. Religious Environment
      • specify religion, if any
      • specify local churches
      • mention local ministers, priests, rabbis that are familiar with your child
      • ask for regular visits from church members/clergy, if possible, etc. (if desired)
      • request that your child participate in church services and other activities as much as possible (if desired)
    8. Medical Care
      • mention current medication being taken and the purposes of each
      • discuss the drugs that have and have not worked in the past and why
      • describe your feelings about the drug therapy program, etc.
      • (mention allergies, medical conditions/considerations, etc.)
    9. Behavior Management (Support Needs)
      • describe the current behavior management program that is being used
      • mention the other behavior management programs that have been tried and give the results
    10. Final Arrangements
      • describe your desires for your child's final arrangements and include information about:
        • prearrangements, if any
        • choice of funeral home
        • cremation or burial
        • cemetery
        • monument
        • church service (memorial service)
  • Please include any other information that you feel will help the future care providers in giving the best possible care and supervision. (For example does your child have preferences for colors, music, sleeping late, etc. What brings your child happiness or pleasure?)
  • The Letter of Intent should be placed in your special estate planning binder with all of the other relevant legal and personal documents concerning your child. Should anything happen to you, the future guardians and trustees will have the information that will guide them in understanding your child's unique history and will assist them in maintaining the quality and consistency of life which is so essential to any special child.

REFERENCES:

Fee, Richard. The life planning approach, New Ways, Fall 1990, pps. 18 -19.

Guidelines for Preparing a Letter of Intent, Estate Planning for the Disabled, Publication L5503.

Russell, L. Mark. Writing your letter of intent, New Ways, Fall 1990, pps. 20 25.

Antes de asistir a la junta ITP de su hijo, toda la familia (la persona en transición, sus padres, hermanitos, parientes, amigos cercanos, etc.) deben reunirse y discutir a fondo todos los asuntos que se describen a continuación. Traten de formular un sueño, un sueño que todos puedan compartir. Ponga su sueño por escrito y haga copias para entregar a los profesionales y a los miembros de la comunidad que podrían ayudar a realizar su sueño. Escriba todas las preguntas que tenga o la información que necesite obtener durante la junta de transición. Si usted está preparado para discutir estas cuestiones, el proceso de ITP puede convertirse en una herramienta poderosa que le puede ayudar a realizar sus sueños. Recuerde, usted está formando un sueño que usted, su hijo y su familia opinan que puede ser lo mejor para una vida de alta calidad. No trate simplemente de predecir lo que usted espera que se le ofrezca a su hijo.

1. ¿En dónde le gustaría que su hijo viviera cuando él o ella ya no esté en la escuela? ¿Considere este plan en relación a cuando él/ella tenga 30, 50 o 70 años? ¿Cuánto y que clase de asistencia diaria su hijo(a) necesitará? ¿Qué aspectos de la casa son los más importantes, viéndolos desde el punto de vista de su hijo(a)?

2. ¿Qué es lo que usted imagina que su hijo haga con sus días cuando él o ella ya no asista a la escuela? ¿Qué es lo que motiva y significa algo para su hijo(a)? ¿Estar empleado es parte de su sueño? ¿Qué clase de empleo y lugar de trabajo? ¿Cómo va a contribuir su hijo(a) a la comunidad en donde vive? ¿Cómo podría su hijo(a) aumentar su confianza en sí mismo(a)?

3. ¿Qué clase de entrenamiento o educación adicional usted desea que su hijo reciba durante sus años de adulto? ¿En qué lugar desea que esto se lleve a cabo? ¿Cómo el entrenamiento o educación adicional influenciará la vida del niño, dónde vive, trabaja o se divierte?

4. ¿Qué se imagina usted que su hijo haga para diversión cuando sea un adulto? ¿Qué habilidades lo pueden ayudar a disfrutar mejor su tiempo libre? ¿Qué actividades él/ella disfrutará hacer cuando esté solo en casa? ¿En qué actividades él/ella participará en compañía de otros o en la comunidad?

5. ¿Quienes serán las personas más importantes para su hijo(a) durante su vida de adulto? ¿Quienes serán sus amigos? ¿Qué actividades compartirá con otros? ¿Qué oportunidades tendrá su hijo(a) de conocer a otra gente?

6. ¿Qué ayuda piensa usted que su hijo necesitará más tarde en su vida, para hacer decisiones y proteger sus propios intereses? ¿Quién le va a proveer la ayuda necesaria, especialmente después de muchos años? ¿Que pasos podemos tomar ahora para asegurar que alguien esté ahí para ayudarlo más tarde en su vida?

7. ¿Que espera usted que sea el principal ingreso de apoyo financiero a través de su vida? ¿Está su testamento estructurado en tal manera que su hijo no esté en peligro de perder el apoyo del gobierno que él/ella puede tener? Si su hijo(a) va a necesitar asistencia para manejar sus recursos, quién lo va a ayudar?

8. ¿Cuales otras áreas en la vida de su hijo(a), tales como asuntos médicos, transportación, cuestiones religiosas, necesitarán planes especiales?

Es posible que usted ya tenga un sueño para todos estos aspectos de la vida de su hijo(a). Si es así, usted debe hacer el esfuerzo de incluir más personas que la ayuden y trabajen para hacer el sueño una realidad. La Junta ITP es una forma de hacer esto.

Usted puede pensar que todo esto es demasiado para usted y sentir la inclinación de decidir a esperar para hacer estas decisiones. Sin embargo, nunca es demasiado temprano para sentarse con su familia y comenzar a desarrollar su visión para el futuro. Sólo la consideración cuidadosa de estos asuntos puede prepararlo para las discusiones de ITP y ayudarlo a poder informar a las personas que estén ahí para ayudarlo a implementar su plan. Haga valer sus derechos. Recuerde que usted y su hijo son los que vivirán de acuerdo a este plan.

Otros pasos que usted debe tomar antes de la junta ITP incluyen: (1) Educarse acerca del intento de la ley que instituyó el ITP en Texas, para que usted pueda defender sus derechos y los de su hijo(a). (2) Pregunte a los empleados de la escuela, a los miembros de los grupos de soporte de padres y a otras personas, tales como yo, acerca de la función que tienen las agencias de servicios humanos en el proceso de transición y los tipos de servicios que cada agencia proporciona. (3) Pida a la escuela que invite a la junta ITP a individuos que usted piensa que necesiten participar en la junta. Además del personal de la agencia, incluya a miembros de su familia y su comunidad que serán parte del apoyo a su hijo en el futuro.

Puede ser que se necesite cambiar la hora y el lugar de la junta con el objeto de acomodar la participación de todas las personas.  

Preparado por: David Wiley, Servicios de Asistencia
Texas School for the Blind and Visually Impaired

Before attending your child's ITP meeting, the entire family (the individual transitioning, parents, siblings, extended family, significant friends, etc.) should sit down together, and thoroughly discuss the issues described below. Try to form a dream that everyone can share. Write down your dream so that you can give copies to all the professionals involved and community members who might help you and your child reach your dream. List any questions you have, or information you need to get during the transition meeting. By being prepared to discuss these issues, you can make the ITP process a valuable tool in making your dreams come true. Remember, you are forming a dream that you, your child, and family think would be best for a high quality of life. Do not simply try to predict what you expect will be available for your child.

  1. Where do you envision your child living when he or she is no longer in school? Consider this plan related to your child when he or she is 30, 50, or 70 years old? How much and what kind of daily assistance or support will your child need? What qualities about a home are most important from your child's perspective?
  2. What do you envision your child doing with his or her days after he or she is no longer in school? What would you child find meaningful and motivating? Is employment part of the dream? What kind of work and workplace? How will your child contribute to his or her community? How will your child increase his or her self-esteem?
  3. What additional training or education do you envision your child having during his or her adult years? In what setting will this training take place? How will additional training or education influence where your child lives, works, and recreates?
  4. What do you envision your child doing for enjoyment during his or her adult life? What skills would enhance his or her ability to enjoy his or her spare time? What activities will he or she enjoy doing alone at home? What activities will he or she participate in with others or out in the community?
  5. Who will be the most important people to your child during his or her adult years? Who will be his or her friends? What activities will your child share with others? Where will your child have opportunities to meet other people?
  6. What help do you envision your child will need throughout his or her life in making decisions and protecting his or her self interest? Who will provide any help needed, especially many years from now? What steps taken now might help make sure someone is there to help your child with this later in his or her life?
  7. What do you envision to be your child's chief means of financial support throughout his or her life? Is your estate structured in such a way that your child will not be in jeopardy of losing any government supports he or she might have? If your child will need assistance managing his or her resources, who will do that?
  8. What other areas of your child's life, such as medical issues, transportation, and religious concerns, may also need special planning?

You may already have a shared dream for all these aspects of your child's life. If so, you should make the effort to involve more people in supporting your dream and working to bring it about. The ITP meeting is one way to do that.

You may find all of this overwhelming and be inclined to put off this kind of discussion. However, it is never too soon to sit down with your family and start to develop your vision of the future. Only careful consideration of these issues can prepare you for the ITP discussion and help you inform the people who arethere to help you plan. Be assertive; stick by your dream. Remember you and your child will be the ones to live the plan.

Other steps you should take before the ITP meeting include:

  1. Educate yourself about the intent of the law that instituted the ITP in Texas so you can advocate for your rights and the rights of your child.
  2. Ask school personnel, members of parent support groups, or others such as myself about the role of the human services agencies in the transition process and the types of services each agency provides.
  3. Ask the school to invite individuals to the ITP meeting that you feel need to participate. In addition to agency personnel, include family and community members who will play support roles for your child. The time and location of this meeting may need to be adjusted to accommodate their participation. 

Developed by David Wiley, Outreach Services, Texas School for the Blind and Visually Impaired

by Connie Sellars-Buckalew, Area Director of Partners Resource Network and Mother of a Special Needs Child

Somewhere amidst the fairy tales of childhood, my most memorable recollections, is waiting for the arrival of the Tooth Fairy. Magical as Christmas, preparing for the visitation of the Tooth Fairy was total enchantment!

At an early age I was spellbound by books containing folklore and literature that made the wispy wings of fairies inspiring to me. Disney further sparked my imagination as Tinkerbell showered glistening fairydust upon me. To this very day, I cannot walk through a forest or a hollow or see a fairy ring of mushrooms without reliving dreams of leprechauns, pixies, and fairies.

I remember the sheer excitement I shared with my brothers and cousins when any of us suddenly realized we had a loose tooth. Immediately schemes began to be hatched on how to pull the tooth as painlessly as possible. We predicted which night the tooth would finally be out, securely placed under the pillow, awaiting the Tooth Fairy and the exchange of money or a small gift.

I can still hear the laughter of my grandparents as they offered helpful hints they used as children to pull teeth. These stories included the old "Tie a string to your tooth, and attach the other end to the doorknob" method. We, of course, abandoned that idea quickly.

Being the mom of a child with special needs has brought me even greater mysteries than those of fairies, pixies, and leprechauns. Where have all the baby teeth gone? My son, Barry, being hearing impaired and nonverbal, was unable to communicate to me when he had a loose tooth. One by one, his teeth disappeared leaving me bewildered and a bit guilty. "A good mom should know these things," I told myself. Had my child swallowed his teeth with the mashed potatoes or guzzled them down with the Dr. Pepper? Never once did I discover one of these precious teeth, to my disappointment. They seemed to just pop out like popcorn and vanish into thin air.

I was a definite killjoy as I enviously listened to the moms of other kids tell their yarns of preparing for my long-lost Tooth Fairy. Sadly, I thought back to those traces of my past.

Remarkably, after two years of helping Barry brush his permanent teeth, those "lost pearls" have recently begun to reappear in odd places. One toppled out of a bathroom cabinet as I replaced the shelf paper. Another was swept out from under the refrigerator. Running my hands under chair cushions has proven profitable in finding loose change and (you guessed it) . . . The last one caught my eye as I vacuumed the carpet under the seats of my car.

Each new revelation brought some misty fantasy from my past. My heart skipped a beat, and then, once I fell back to earth from cloud-nine, I knew I had some decisions to make. What is to be done with these tiny remembrances of my son's babyhood? Is it too late for the Tooth Fairy or should I keep them in a babyhood jar? Better yet, I could make jewelry!

from Spring 97 issue

by Lindie Hunt and Elaine St. Marie

Editor's Note: It is impossible to imagine a loss greater than the loss of a child. Many parents of children with severe disabilities live with the reality that their child may not live into adulthood. We might assume that they are somehow better prepared to deal with the death of their child when it occurs. Lindie Hunt and Elaine St. Marie are two parents who have experienced this ultimate tragedy. I deeply appreciate their willingness to share their experiences with us and to speak openly of their grief and loss. I hope that these stories will help other parents who face this ordeal and give insight to the professionals who reach out to support these families in their time of need. Both Lindie and Elaine are willing to be contacted by other families who need support when a child dies.

KRISTEN

It's been five years since the death of my daughter, Kristen. If someone were to ask me if I'm OK with her death now my answer would have to be, "No." I don't think a parent can be OK with the fact that they have lost a child. But if asked if I have happiness and peace in my life I would easily answer, "Yes." I have been blessed with so much since my daughter's death---none of it replaces her or my relationship with her, but I have found new people and new relationships that bring so much to my life.

For parents facing the possible death of their own child I have the utmost empathy. The waiting and wondering how it will be, how I will feel, if I will survive is very hard. I often heard that I, of all people, should have been prepared for her death. After all I lived with my child's terminal diagnosis for over five years. There is no way to really be prepared. I did visit a funeral home a few years before she died. I did read countless books about the grieving process. I did the things I thought one should do to be prepared. In the end, her death was as much a shock to me as anyone. How did it happen so quickly? Why didn't I see it coming? How do I go on?

When you lose a child you lose so much more that you may not be prepared to lose. I lost my daily support from the nurses that had come to my home to help care for Kristen. I lost my identity as a mom who cared for a child with special needs. I eventually lost my connections to other moms who still cared for their children. After she died, I was left with memories, pictures, and a hole in my heart. Over the years the hole in my heart has healed leaving only a tender scar. One that aches from time to time---especially on her birthday and the anniversary of her death. I still cry but more often I find myself thinking of her and smiling as I remember a love and bond that was beyond description.

MICHAEL

Michael was born with severe brain damage which resulted in cortical vision impairment, cerebral palsy, and many health problems. He was tortured by the treatments he had to undergo; we were tortured by the stress of watching his suffering, the demands of his care, and dealing with schools and professionals.

We loved him dearly, but as I went to the funeral for various friends' children, I often wondered why he was still with us. I was sometimes so exhausted and/or overwhelmed. I almost wished for it to be over. I thought I had prepared myself for the possibility, that he would die. And then that call came when he was almost 7 years old, a page from an attendant. Michael had been having a great day even though he had a poor night the night before, so I didn't expect a real problem. In fact, I remember telling the attendant to have EMS transport him to the hospital and we would meet them as quickly as we could get there. The EMS technician got on the phone and said that he was not going to make it. I didn't know what to say.

When we arrived at the attendant's apartment, there was this beautiful white lace sheet on the floor. I remember thinking he couldn't be under that because it was so small ... his tiny, tortured body no longer. I thought he had been limp in the past...he was so much limper now. My husband and I took turns holding him, cleaning him up, talking to him. The doctor was able to come to be with us, a rare occurrence we later found out. Then came the planning for the funeral. We chose to make it a celebration of his life.

I don't think you can ever really be prepared for death. It was harder than I expected; I've grieved more than I expected. Just as there are only some people we can really talk to about our children while they are alive, it seems that there are only a few people we can talk to about them once they have died. Usually another parent who has gone through the experience. There are some support groups but the one I had experience with was primarily for people who had "normal, healthy" children who became ill; not one who never talked, walked, or laughed. For me, it wasn't the right group.

Where did I fit in? How would I structure my life? I was forever tied to the world of disabilities/medical needs by my work. So I sought solace in helping
others as much as possible. My friends who have children with special needs have been wonderful and accept me as one of them still. Now almost 2 years later, I still cry more easily than I wish when I think of Michael. The tears stream down my face now.

Because we recently adopted a "normal, healthy" eleven year old boy, I am adjusting to mild guilt feelings about "forsaking" Michael. This week, I decided to think of Michael as someone who had grown up and moved out of our home because it wasn't the right place for him to be anymore. So instead of sadness or guilt, I am choosing to be more neutral, that his death was a natural part of life. And I believe it strongly.

I just wish the tears would stop. I don't know if they ever will. They don't come quite as often or quite as easily. I have my pictures and my memories. I was blessed by Michael's life and can't imagine not having had him.

Lindie Hunt
1706 Oakwood Drive
Austin, Texas 78753

Elaine St. Marie
2501 Carlow Dr.
Austin, Tx 78745

En Espanol

by Cyral Miller, TSBVI Outreach Director

Do you have trouble getting your children to keep their glasses on? You are not alone! Here are a few ideas that might help, and you can check with your ch`s vision teacher for more. What y`ve always heard is true; your glasses (or your ch`s glasses) won`t help if you don`t wear them.

  • Start your child off by having him/her wear the glasses for short periods of time during highly motivating activities. Hopefully the activity is so much fun, the child will forget about them or decide it will be worth the bother of wearing glasses. For example, use the glasses as part of reward times such as when your child is watching a favorite video or playing with clay.
  • Make sure you know when the glasses should be worn. If the prescription is only helpful for distance viewing and you are asking your child to wear them for near vision tasks, it may be teaching the child that glasses make things more difficult to see, not easier! Check with your ophthalmologist or optometrist to be sure.
  • Check the fit of the glasses. Sometimes children grow so fast that the glasses can become tight and uncomfortable. On the other hand, glasses that are fitted poorly can slip and slide down rendering them virtually useless to the child. Some children may need to have special elastic bands that keep the glasses on more securely or ear pieces that curl around the ears.
  • When the child is adjusting to her glasses, pick activities where glasses will make the biggest difference in her ability to see clearly. It is also important to spend some time showing your child what she can see or do better while wearing glasses. Even for adults, seeing how much easier it is to read a paper or the phone book or understand road signs at night is typically a big motivation for remembering to put on their glasses.
  • Be matter-of-fact, not apologetic, about wearing glasses. Glasses are a marvelous technology that brings the world into focus, and not a burden to be endured. Attitudes of adults can influence children more than we know. Make glasses "cool" for your child to be wearing.
  • Speaking of "cool", think about decorating the frames or the case, or if at all possible, let your child pick out outrageously beautiful frames. Point out pictures of "cool" people who wear glasses or find a respected peer who can endorse their value for your child. Make sure you also are "cool" about glasses; if you need to wear them be sure you do and point that out to your child. Even wearing sun glasses can set a good example for your child.
  • Don`t forget to praise your child for remembering to wear his glasses when he needs them. In all things, praise works better than criticism.
  • If you have other tips to share on keeping glasses on your child or children you have worked with, please let us hear about them. You can send comments to Cyral Miller at TSBVI Outreach, 1100 West 45th Street, Austin, TX 78756, or phone (512) 206-9242 or E-mail to

por Cyral Miller, Director de Servicios TSBVI

¿No puede hacer que su hijo no se quite los lentes? ¡Usted no es la única que tiene ese problema! A continuación le damos algunas sugerencias que le pueden ayudar, y usted puede hablar con la maestra de su hijo para que le de más ideas. Lo que usted ha oído siempre es verdad; sus lentes (o los lentes de su hijo) no le van a ayudar si no los usa.

  • Al principio haga que su hijo(a) se ponga los lentes por períodos cortos de tiempo, durante actividades que lo entretienen motivado. Con suerte la actividad es tan divertida que el niño olvida que trae los lentes puestos o decide que vale la pena traerlos puestos. Por ejemplo, use los lentes como parte de una recompensa, como cuando deja a su hijo ver la televisión o jugar con la masilla.
  • Verifique que los lentes le queden bien al niño. Algunas veces los niños crecen tan aprisa que los lentes les quedan apretados y no los sienten cómodos. Por otro lado, los lentes que quedan grandes pueden deslizarse y no servirle para nada. Algunos niños pueden necesitar bandas elásticas para sostener los lentes mejor, o un aparatito en el oído que se sostiene alrededor de las orejas.
  • Cuando el niño se esté acostumbrando a los lentes, escoja actividades en las que él pueda apreciar que con los lentes puede ver mejor. También, es importante dedicar tiempo para mostrarle al niño lo que él/ella puede ver mejor o hacer mejor cuando se pone los lentes. Aún para los adultos, el descubrir lo mucho más fácil que es leer el periódico o el directorio de teléfonos es un gran incentivo para recordar ponerse los lentes.
  • Sea firme, no pida disculpas porque usa los lentes. Los lentes son un maravilloso instrumento que nos ayuda a ver el mundo más claramente, no son una carga que tenemos que aguantar. Las actitudes de los adultos influencían a los niños más de lo que imaginamos. Actúe como si usar lentes es algo "muy de moda".
  • Hablando "de las modas" piense en decorar el marco de los lentes, o el estuche de los lentes, si es posible deje que su hijo escoja los marcos más extraordinariamente bonitos. Enséñele fotos depersonas "famosas" que usan lentes, o encuentre a un compañerito que pueda ayudarle a demostra el valor de los lentes a su hijo. Si usted usa lentes, asegúrese de ponérselos y demostrarle a su hijo que usted también usa sus lentes. También es un buen ejemplo usar lentes para el sol.
  • No se le olvide elogiar a su hijo cuando recuerda ponerse sus lentes. En todo, siempre los elogios siempre son mejor que las críticas.

Si usted tiene otras sugerencias acerca del uso de los lentes y desea compartirlas con nosotros, por favor escriba a Cyral Miller a TSBVI Outreach, 1100 West 45th Street., Austin, Texas 78756 o llame por teléfono al (512) 206-9242 o e-mail a <>

Versión Español de este artículo (Spanish Version)

by Kay Spinella, Kathleen Kean, and Marilyn Harder, Boerne, Texas

Editor's Note: Kathleen and Marilyn are the adoptive parents of John McDonald. With the help of their friend Kay Spinella, they wrote this letter to share with John's ARD team. When we talk about the importance of parents as a part of a child's educational team, I think we sometimes only pay lip-service to a practice that is mandated by law rather than actually acknowledging and tapping into parental expertise. This letter is a fine example of how parents have critical information to share with educators about their child. If we do not respect their knowledge and truly seek their input in planning for the child and in carrying out programming, we are wasting an incredibly valuable educational resource. If you have comments or questions for either Kathleen or Marilyn you may contact them at Children's Inn, 216 W. Highland, Boerne, TX 78006.

John was born prematurely on June 5, 1991. He weighed one pound, fourteen ounces; nearly every system in his body was affected by his premature birth. He suffered Respiratory Distress syndrome and Bronchopulmonary Dysplasia requiring oxygen therapy. As a result of the oxygen therapy, he developed severe retinopathy which progressed to retinal detachment requiring lensectomy and vitrectomy. John is totally blind and has been fitted with prosthetic eyes.

Due to respiratory and gastrointestinal problems, a gastrostomy was performed at sixteen weeks of age (a tube was inserted into John's stomach and he is fed through this tube). John continues to be fed through the gastrostomy although he takes some food by mouth. The introduction of oral feedings and decrease in tube feedings led to a serious weight loss. John's nutritionist is monitoring his weight closely and has advised six cans of Pediasure via the gastrostomy tube daily. We continue to try oral feedings in addition.

For years John did not experience oral feedings and cannot see that people enjoy eating nor enjoy the sights we experience looking at food. As difficult as it may be for us to imagine, John has never developed pleasure in eating. We have found that offering some positve reinforcement immediately after feeding meets with moderate success. For example, John is allowed to play with his Speak and Say for ten minutes after eating by mouth. John can eat small portions of stage two baby foods and soft table foods.

John also experienced serous language delays and was almost completely nonverbal until recently (about 18 months ago). Over the last several months, John has made significant progress in his verbal skills. He has a sizable vocabulary, understands the concept of a sentence, and struggles to put his thoughts into complete sentences. However, his is not the speech of a normal five year old. When spoken to, John needs a few seconds to gather his response and sometimes a prompt to let him know you are waiting for his response.

John takes Intal daily but continues to experience frequent respiratory infections that often require treatment with steroids and bronchodilators. These medications cause hyperactivity and decreased ability to concentrate. John also exhibits "blindisms" such as flailing his arms, walking in circles, rocking, and sitting with his head down which decrease dramatically when he is actively engaged in learning.

John's multiple medical problems have created many traumatic situations for him when he has to be forcibly held down in order that certain medical procedures be performed. His age, his blindness, and his delayed verbalization have contributed to the physical and emotional traumas he has experienced. Many procedures were carried out when John was too young to understand a verbal explanation of the procedure. Being blind, he was unable to see what was happening around him. His inability to verbalize prevented him from expressing his fears and anxieties relating to the procedure as well as from asking questions that may have been important to him. As a result, being held is very threatening to John and often invokes memories of painful and frightening experiences. Very probably, it sets off the "fight or flight" response that enables humans to respond to threatening situations which, for John, results in agitation and the need to act rather than calming him. Speaking to John in a quiet voice or redirecting his attention to another activity is much more likely to be effective in calming and quieting him and eliciting his cooperation.

John's blindness is only one small part of his special needs. Every process that supports human life was an exceptional act for John's tiny underdeveloped body at birth. Even the most simple life sustaining acts of breathing and eating had to be mechanically assisted. The months and years of being poked and probed have left their scars. John is not like other "normal" children, nor is he like other blind children. His needs are truly special. Over the years we have found several effective ways of dealing with John's special needs. We would like to share our experiences with you today in the hope of providing the most appropriate and effective educational environment for John. While we readily acknowledge that John has many special needs, we are equally ready to acknowledge his special skills that deserve as much attention as his needs.

We agreed that John should repeat kindergarten because he is developmentally delayed in his social interactive skills with his peers. Center time is crucial for John for the development of these skills. However, there needs to be an aid present during that time to facilitate the learning of these skills.

John is older than most of the children in his class and he has not napped for several years. It is difficult for him to be still during this time because he is so eager to learn. Also if he naps during the day, he is unable to get to sleep at night. Perhaps the schedule can be adjusted to meet John's needs. It would be more beneficial for John to use nap time as pull out time for occupational or speech therapy, mobility training, Braille or reading.

John is very bright. Since he has already mastered many of the academic concepts of kindergarten, he may need an enriched kindergarten curriculum to avoid boredom and maximize his learning potential. Last spring assessment suggested that "John should be considered for enriched math and reading instruction." We have found that following John's cues is often an effective teaching tool. He is always eager to learn new things. He is an auditory and tactile learner, and he has an exceptional memory for details. When reading picture books to John, we often ask him what he thinks might be in the picture. For instance, "John, there is a picture on this page. Listen carefully to what I read and tell me what you think might be in the picture. I'll tell you when I'm finished reading and then you tell me what you think is in the picture, okay?" Wait for John to respond. His teacher might also ask one of the other students to describe what is in the picture to John. This includes John in the learning activity, acknowledges his ability to respond intelligently to questions, teaches the other students a little about what it means to be blind, enhances the observation and verbalization skills of the other students (John, too) and fosters a truly cooperative learning environment.

Because John is blind, he learns what we, the sighted, experience through sight via sound and touch. The sighted are constantly bombarded with visual stimuli. John's stimuli come from sound and touch. While the hallways may need to be a quiet zone for the sighted children, John's "vision" of the corridors comes from the echoes of sounds (his footsteps on the floor) and the touch of what is around him. Other children may need to keep their hands to themselves, but John's hands are his eyes --- touching allows him to "see" what is around him. John's world is already limited by his lack of sight. Should we further limit his world by denying him sound and touch? We believe that the concept of inclusion does not simply refer to including the special needs child in the classroom, but also to teaching the other students that this child has special or different needs from theirs, teaching them to become sensitive to these needs, and fostering a cooperative learning environment which includes all students, teachers, and aids.

When John is concentrating or listening, he often puts his head down. While this may seem disrespectful on the part of a sighted student listening to a teacher, this is John's way of focusing on what is being said and shutting out distracting auditory stimuli. John's retention of the spoken word is excellent. Being included in discussions is very important for him. He may, however, need a wait time to process his answer before he responds to questions. Sometimes a prompt or hint is helpful, for example: "If yesterday was the last day of August, what is the new month?" John yells when he cannot verbalize his feelings. You might verbalize for him what you think he is feeling. For example, "John are you saying that you don't want to do ----?"

Since John cannot see his environment, perhaps his teacher or O&M can utilize some other time to introduce John to areas such as the computer room and the music room to allow John to "see" his environment through sound and touch. A narrated tour while allowing John to touch (e.g., musical instruments, computers, tests, etc.) would enable John to have a better understanding of the different rooms in a school and their purpose. Hence, he would be more cooperative and able to participate when he is with his classmates in an instructional setting. Exploring these areas might be used to reward John for good behavior. For example, "John, if you do this now (specify what you want him to do such as sit quietly, walk quietly, etc.) then later (give specific times such as after lunch or during nap) we can explore the computer room, or music room, etc."

It is very important to verbalize changes in schedule. John cannot see what is going on around him. A verbal explanation of how and why the schedule has to be changed prepares John for what to expect and why. He is much more likely to cooperate when he understands what is going on and is involved in the planning. If he does not understand what is happening, he feels threatened and confused and may resist.

It is our goal to help create the most effective and appropriate learning environment for John. We would like to be involved in his education, and we want to work cooperatively with you to create such an environment. We believe that frequent meetings are an important factor in John's education. We only want the very best for John as all parents want for their children. We know that you want the same. If you feel we are overstepping our bounds, please discuss this with us. We would like to work with you to ensure John's educational success. We do not offer suggestions because we think we know more than you but because we know John better than you and have learned what is most effective in relating to him. We ask only that you try what we suggest to see if it is effective.

Despite his multitude of problems John seems to be a very intelligent little boy. He has an incredible memory and is able to concentrate for long periods of time when actively involved in learning he finds purposeful. For instance, he uses his cane appropriately when he feels it is purposeful and when he is not being led by a "helping hand." John loves to learn new things and likes to be independent. When people try to help John by not letting him try things on his own or protect him by doing things for him that he can do or learn to do for himself, he becomes frustrated and his "blindisms" become more evident. John needs to be allowed to take the risks involved in learning new things. John is ready and willing to take the risks. We believe that John has great potential; he just requires gentle guidance and facilitated learning.

We are grateful for the opportunity to share this information with you, and we thank you for listening.

por: Kay Spinella, Kathleen Kean y Marilyn Harder. Boerne, Texas.

Nota del editor: Kathleen y Marilyn son los padres adoptivos de Juanito McDonald. Con la ayuda de su amiga Kay Spinella escribieron esta carta al equipo ARD de Juanito. Cuando hablamos de lo importante que es que los padres sean parte del equipo educacional del niño, yo siento que algunas veces únicamente hablamos pero no practicamos lo que la ley ordena - actualmente reconocer y hacer uso de la experiencia de los padres. Esta carta es un gran ejemplo de cómo los padres cuentan con información crítica acerca del niño que debe compartirse con los educadores. Si nosotros no sentimos respeto por los conocimientos de los padres y verdaderamente buscamos su ayuda para planear la educación de su hijo y lograr llevar a cabo la programación, estamos prescindiendo del uso de una valiosa fuente de recursos. Si tiene comentarios o preguntas para Kathleen o Marilyn, escríbales a: Children's Inn, 216 W. Highland, Boerne, TX. 78006.

Juanito nació prematuramente el 5 de junio de 1991. Al nacer pesó una libra y catorce onzas; casi todos los sistemas de su cuerpecito se vieron afectados por su nacimiento prematuro. Juanito padeció el síndrome de Tensión Respiratoria y Displasia Broncopulmonar, por lo que se necesitó usar el oxígeno. Como resultado de la terapia de oxígeno, se le presentó una severa retinopatía la cual progresó a desprendimiento de la retina y necesitó hacerse una lensectomía y vitreoctomía. Juanito quedó totalmente ciego y se le han puesto ojos prostéticos.

Debido a los problemas respiratorios y gastrointestinales se le hizo una gastrostomía a las 16 semanas de nacido (se le insertó un tubo en el estómago y por medio del tubo se le dan alimentos). Juanito continúa siendo alimentado por medio de la gastrostomía, aunque ahora puede comer algunos alimentos por la boca. La introducción de los alimentos por la boca y la disminución de la alimentación por medio del tubo le produjo una severa pérdida de peso. El especialista en nutrición está supervisando cuidadosamente el peso de Juanito y ha aconsejado que se le den seis latas de Pediasure diariamente por medio del tubo. Además, continuamos tratando de alimentarlo por la boca.

Por años, Juanito no disfrutó la experiencia de sentir los alimentos en la boca, y tampoco puede ver a las personas disfrutando los alimentos o ver los alimentos. Aunque para nosotros sea difícil de entender, Juanito nunca ha desarrollado el placer de disfrutar los alimentos. El ofrecerle un refuerzo positivo inmediatamente al terminar de comer, logramos un éxito moderado. Por ejemplo, dejamos que Juanito juegue con el Speak and Say por diez minutos después que come con su boca. Juanito puede comer pequeñas porciones de comida de bebé y comida suave de mesa.

Juanito también ha sufrido demoras serias en su lenguaje y hasta recientemente (hace 18 meses) no emitía sonidos bocales. En el transcurso de los últimos meses, Juanito ha logrado progresar en sus habilidades verbales. Ahora ya cuenta con un vocabulario de buen tamaño, comprende el concepto de la frase, y se esfuerza para convertir sus pensamientos en frases completas. Sin embargo, él no habla con el lenguaje normal de un niño de cinco años. Cuando se le habla, Juanito necesita unos segundos para asimilar la respuesta y algunas veces necesita un recordatorio para dejarle saber que se espera su respuesta.

Juanito toma Intal diariamente, pero continua padeciendo frecuentes infecciones en el sistema respiratorio que a menudo requieren tratamientos de esteroides y broncodilatadores. Estos medicamentos causan hiperactividad y disminuyen su concentración. Juanito también exhibe comportamientos típicos de ciegos, movimiento de los brazos, caminar en círculos, mecerse y sentarse con su cabeza inclinada. Estos comportamientos disminuyen dramáticamente cuando está activamente involucrado en una actividad de aprendizaje.

Los múltiples problemas médicos han creado muchas situaciones traumáticas para él cuando se le ha tenido que forzosamente sujetar para que ciertos tratamientos médicos pudieran ser llevados a cabo. Su edad, su ceguera y su demora para hablar han contribuido a los traumas físicos y emocionales que ha sufrido. Muchos tratamientos fueron hechos cuando Juanito estaba muy chiquito para entender por qué se necesitaba el tratamiento.

Por su ceguera, él no puede ver lo que está sucediendo a su alrededor. Su inhabilidad para hablar evitaba que él expresara los temores e inquietudes que sentía por el tratamiento, tampoco podía hacer preguntas que quizá eran importantes para él. Como resultado, Juanito desarrolló temor a ser sujetado o cargado, ya que esto invoca recuerdos a menudo dolorosos y atemorizantes. Muy probablemente, la automática respuesta de "corre o vuela" que permite que los humanos respondan a situaciones amenazadoras, en Juanito provoca agitación y la necesidad de reaccionar en lugar de provocarle calma. Con Juanito, el hablarle con una voz calmada y el tratar de redirigir su atención hacia otra actividad es mucho más efectivo para calmarlo, aquietarlo e inducirlo a que responda con cooperación.

La ceguera de Juanito es solo una pequeña parte de sus necesidades especiales. Cada proceso que apoya la vida humana era un acto excepcional para su cuerpecito. Aún las funciones más simples de vida, tales como el respirar y el comer tenían que ser asistidas mecánicamente. Los meses y años de haber sido picado y examinado han dejado cicatrices. Juanito no es como otros niños "normales". ni tampoco es como cualquier otro niño ciego. Sus necesidades son verdaderamente especiales. Hoy, nos gustaría compartir nuestras experiencias con ustedes, con la esperanza de que nuestras experiencias puedan ayudarles a encontrar el medio ambiente educacional apropiado y efectivo para Juanito. Al tiempo que reconocemos que Juanito tiene muchas necesidades especiales, también estamos dispuestos a reconocer que tiene habilidades especiales que merecen tanta atención como sus necesidades.

Estuvimos de acuerdo en que Juanito repitiera el kindergarten porque el desarrollo de sus habilidades de interacción social están demoradas comparadas con esas de sus compañeritos. La hora de centros es crucial para el desarrollo de estas habilidades. Sin embargo, se necesita que un asistente esté presente durante esa hora para facilitar el aprendizaje de las habilidades mencionadas.

Juanito es más grande que la mayoría de los niños en su aula de clases y hace mucho que ya no duerme siesta. Para él es difícil estar quieto durante la hora de la siesta porque está tan ansioso de aprender. También, si duerme siesta durante el día, en la noche le es difícil dormir. Quizá el horario pueda ser ajustado a las necesidades de Juanito. Durante esa hora, sería más beneficioso que a Juanito se le diera terapia ocupacional o de lenguaje, entrenamiento en movilidad, Braille o lectura.

Juanito es muy inteligente. Siendo que ya ha aprendido muchos conceptos académicos de kindergarten, puede ser que él se beneficie de un programa más elevado de kindergarten, esto evitaría que se aburriera y aprovecharía al máximo su potencial de aprendizaje. La evaluación de la pasada Primavera sugería que: "Juanito debería ser considerado para instrucción elevada en matemáticas y lectura. Hemos encontrado que el seguir las señales que Juanito proyecta, a menudo nos ayuda a enseñarle mejor. El siempre está deseoso de aprender nuevas cosas. El aprende por medio del oído y el tacto, y cuenta con una memoria excepcional para los detalles. Cuando le leemos cuentos con dibujos, a menudo le preguntamos lo que piensa que el dibujo puede ser. Por ejemplo: "Juanito, hay un dibujo en esta página. Escucha atentamente lo que te leo y dime lo que tú piensas que puede estar en el dibujo. Yo te voy a decir cuando termine de leer y después tú me dices lo que piensas que está en el dibujo. OK?" Espere a que Juanito responda. Su maestra puede también pedir a otro estudiante que describa el dibujo para Juanito. Esto incluye a Juanito en la actividad de la hora de lectura, reconoce su habilidad para responder inteligentemente a las preguntas, enseña a otros estudiantes un poquito de lo que significa estar ciego, mejora las actividades de observación y verbalización del otro estudiante (y de Juanito también), y fomenta un medio ambiente de aprendizaje en cooperación.

Siendo que Juanito está ciego, él aprende por medio del sonido y del tacto. Los que podemos ver, estamos constantemente bombardeados con estímulos visuales. El estímulo para Juan proviene del sonido y del tacto. Mientras que los corredores de la escuela pueden ser una zona de silencio para los niños que pueden ver, para Juanito, lo que le permite "ver" el corredor son los ecos de los sonidos de los pasos sobre el piso y lo que puede "tocar" alrededor. A otros niños se les puede pedir que "no muevan sus brazos y sus manos", pero para Juanito sus manitas son sus ojos — el contacto de sus manos le permite "ver" lo que hay a su alrededor. El mundo de Juanito es limitado debido a su falta de vista. ¿Es justo que se lo limitemos aún más prohibiéndole el sonido y el tacto? Nosotros creemos que el concepto de inclusión no consiste de solamente incluir al niño con necesidades especiales en el aula de clases, sino también consiste de enseñar a los otros estudiantes a ser considerados con el niño y fomentar el estudio en cooperación, incluyendo a todos los estudiantes, maestras y ayudantes.

Cuando Juanito está concentrado o escuchando, él a menudo inclina su cabeza. Esto puede parecer irrespetuoso en un estudiante con vista que escucha a su maestra, pero en Juanito esto es su manera de enfocar su atención a lo que se le está diciendo y evitar ser distraído por otros ruidos. La memoria de Juanito para las palabras es excelente. El que se le incluya en las discusiones es muy importante. Sin embargo, él puede necesitar un poco de tiempo para procesar su respuesta antes de que responda a las preguntas. Algunas veces es útil darle una señal, por ejemplo: "Si ayer fue el último día de agosto, ¿cuál es el nombre de este mes?" Juanito grita cuando no puede verbalizar lo que siente. Usted puede poner en palabras lo que usted crea que él está sintiendo. Por ejemplo: "¿Juanito, estás diciendo que no quieres......?

Ya que Juanito no puede ver su medio ambiente, quizá su maestra o su O&M pueda llevarlo a "conocer" el cuarto de computadoras o el cuarto de música, esto es para que Juanito pueda "ver" el medio ambiente por medio del sonido y el tacto. Llevarlo a "conocer" mientras que se le narra lo que está sucediendo y permitirle que toque las cosas (ejemplo: los instrumentos musicales, las computadoras, etc...) puede permitir que Juanito tenga un mejor entendimiento de las diferentes aulas de clases y para que se usan. Consecuentemente, puede ser que esto le ayude a ser más cooperativo y a participar cuando él está con sus compañeritos en esa aula de clases. El explorar estas áreas puede ser usado como una recompensa por buen comportamiento. Por ejemplo: "Juanito, si haces esto ahorita (especifique lo que quiera usted que él haga, sentarse sosegadamente, caminar calladamente, etc.), después, (especifique la hora en que la recompensa se vaya a dar, después de la comida, durante la hora de la siesta), te llevaré a explorar el cuarto de computadoras, el cuarto de música, etc."

Es muy importante verbalizar los cambios en el horario. Juanito no puede ver lo que está sucediendo a su alrededor. Una explicación verbal de cómo y por qué el horario va a cambiar lo prepara para saber que esperar y por qué. Es mucho más posible que él coopere cuando él entiende lo que está sucediendo y cuando se le involucra en los planes. Si él no entiende lo que está sucediendo, él se siente amenazado y confundido, y puede resistirse.

Es nuestra meta ayudar a los maestros a crear un medio ambiente educacional apropiado y efectivo para Juanito. Nos gustaría estar involucrados en su educación, y queremos trabajar en cooperación con ustedes para crear tal medio ambiente. Creemos que las juntas frecuentes son un factor muy importante en la educación de Juanito. Nosotros sólo deseamos lo mejor para él, al igual que cualquier padre desea lo mejor para su hijo. Estamos seguros que ustedes desean lo mismo. Si ustedes piensan que estamos pasándonos del límite, por favor discútanlo con nosotros. Nos gustaría trabajar con ustedes para asegurar que Juanito tiene éxito en sus estudios. No ofrecemos sugerencias porque pensamos que sabemos más que ustedes, sino porque conocemos mejor a Juanito, y hemos descubierto lo que es más efectivo para él. Les pedimos que por favor utilicen nuestras sugerencias para ver si son efectivas.

A pesar de la multitud de problemas que Juanito tiene, él es un niño muy inteligente. Tiene una memoria increíble y es capaz de concentrarse por largos períodos de tiempo cuando se le deja participar en las actividades de aprendizaje que él encuentra útiles. Por ejemplo, él usa su bastón de manera correcta cuando siente que le está sirviendo un propósito, y cuando nadie lo está guiando con "la mano". A Juanito le gusta aprender cosas nuevas y ser independiente. Cuando las personas lo tratan de ayudar no dejándole hacer las cosas por sí mismo, o haciendo cosas en su lugar con el objeto de protegerlo, se siente frustrado y sus "manerismos de ciego" se hacen más evidentes. Es necesario que se le permita tomar los riesgos involucrados en aprender cosas nuevas. Juanito está listo y deseoso de tomar riesgos. Creemos que él tiene un gran potencial; sólo necesita que se le proporcione el aprendizaje y ser guiado dulcemente.

Estamos agradecidos por la oportunidad de compartir esta información con ustedes y les agradecemos su atención.