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

By Dr. Charity Rowland, Co-Director, Center on Self-Determination
Oregon Institute on Disability and Development
Oregon Health Sciences University

Bringing It All Back Home is a project at the Oregon Health Sciences University's Center on Self-Determination, a program of the Oregon Institute on Disability and Development. The project is funded by the U.S. Department of Education. The goal of the project is to develop a set of materials designed by and for parents of children who are deafblind to evaluate their children, to establish intervention priorities for home and community, and to ensure successful transitions from one school or classroom to another. The project targets 3-12 year old children who are deafblind and involves parents as partners in model and product development and in field-testing efforts.

CURRENT ACTIVITIES

A team of parent consultants from Oregon and Washington is currently working on assessment and evaluation issues. The team has provided input into these issues and we are also collecting input through the World Wide Web. The team is seeking input on these issues from other parents of children who are deafblind. Our web site address is: http://www.ohsu.edu/xd/education/library/index.cfm

This web page describes the project and has a link to a form for submitting the ideas of parents on the assessment and evaluation of their children. The form is provided in English and Spanish. Input received through the web site will be reviewed by our parent consultants and by project staff. If you are a parent, we are interested in your ideas on the assessment and evaluation of your child. Also, if you know other parents who might like to provide input, please pass this information along to them.

PARENT OPINIONS ON ASSESSMENT AND EVALUATION

So far, the major opinions that have been expressed by parents regarding assessment and evaluation are summarized below. These ideas will be integral to the development of assessment instruments which the parent consultants are working on now.

  • Important behavioral domains to assess are: communication skills, perceptual capability, tactile defensiveness, tactual learning, social development, gross/fine motor development, and cognitive development.
  • Specific information that should be gathered abut the child includes: preferences, effective rewards, habits and routines (sleeping, feeding, etc.), recent progress, community-based experiences, ability to adapt to changes and transitions, motivation/initiative to explore the environment, sources of frustration and how the child expresses frustration, health status, home life, and responses to music/rhythm/voice/movement.
  • The role of parents in the assessment/evaluation process involves: providing general information about deafblindness, providing documentation of the child's learning, sharing goals for the child, informing the team of the child's progress, and helping the team to recognize the child's skills.
  • Suggested formats/styles for evaluation include: developing a formal parent report (just like professional members on the educational team), developing guidelines for categorizing behavior so parents can present their information in an organized way, use of anecdotal information to highlight special skills, starting with the concept of the overall goal being to increase the child's independence, including an executive summary of the child's skills and behaviors, use of videotapes of the child, and use of life-print memory/picture books.
  • Appropriate contexts for evaluation include: the home (especially for younger children), the community, and unfamiliar as well as familiar environments.
  • Measurement ideas include: conducting several administrations of assessments within a few months, establishing a baseline and then a standardized form to collect supportive data over time, providing a scale that is not age-based or IQ-based.

FUTURE ACTIVITIES

In future years, we will be seeking input on setting intervention priorities and transition issues. Another avenue for family involvement in this project will occur during our field-testing phase, when we will be seeking families to use and evaluate the materials developed through the project. When we are ready for field-testing we will contact the coordinator of your state deafblind project, and will also make an announcement on our web page. We also welcome your input into other aspects of the project at any time. You may contact project staff at:

Dr. Charity Rowland or
Phillip Schweigert, M. Ed.
OHSU Center on Self-Determination
3608 SE Powell Blvd.
Portland, OR (503) 232 - 9125

DR. Harvey Mar
Developmental Disabilities Center
St. Luke's - Roosevelt Hospital
428 W. 9th Street
New York, NY 10019
(212) 523 - 6235

Fall 1999 Table of Contents
Versión Español de este artículo (Spanish Version)

By Edgenie Lindquist, Jonathan's Mom, Austin, Texas

Editor's note: Children with visual impairments or deafblindness are not immune from having other disabilities to deal with in their lives. Recently I have had a number of families of children with visual impairment or deafblindness contact me about Attention Deficit Hyperactivity Disorder (ADHD) or Attention Deficit Disorder (ADD). The next two articles helped me understand some of the issues children with this type of disorder face and also what their families face.

These words from one of my son's nighttime visits with God early this year will stay with me forever. They continue to fill me with mixed emotions - mixed in the sense that I'm grateful that at the age of seven Jonathan is very much aware that his energy sometimes needs "handling", but also saddened that this particular day had been very hard for him. Being a typical mom, days that overwhelm Jonathan are usually the pits for me, too. After all, moms are supposed to be able to kiss bad days away, aren't we?

This particular night I hugged Jonathan and we talked about how he was feeling. We were able to explore what his energy meant to him. We came to the place where we agreed that he indeed has a lot of energy but that energy is also a good thing. We talked about how energy can be channeled to help him with his innate gifts of creativity and compassion. Hard work would be required - more than most people - but he had it in him to do it. After all, I told him, he comes from a family of hard workers.

Jonathan and I have had other such conversations, but this one felt different - perhaps because he was at a different developmental stage where we could talk about his feelings more in depth, but more than likely it was because I now fully believe what we were talking about - with all my heart and mind. I saw my child differently that night. I saw a child with gifts that with some focus and hard work will lead him to a successful life. My shattered dream child had finally been put back together into a "real dream" - complete, whole and positive.

I couldn't have had this conversation with my son as little as three years ago. As the old commercial says, I've come a long way.... When I first learned that Jonathan had ADHD, he was about to turn four and I was recently divorced. Needless to say, our lives were a tad bit tumultuous. The diagnosis was not easy because Jonathan was so young and because there were so many factors intermingled (the effects of a divorce, Jonathan having an auditory processing problem, etc.). I was determined to prevent a misdiagnosis. However, Jonathan's ADHD was severe enough that ultimately it became clear that although there were other issues, he needed immediate help. Because a support system for families dealing with ADHD wasn't readily available, I tapped into the system I knew best - the field (rehabilitation and visual impairments) I had been working in for over ten years. When I talked with people about our experiences with the multiple assessments, therapies, and entering into special education for speech services, most of the people were quick to make statements like: "You are so fortunate that you have your professional background to guide you through this process."

Although their statement had some truth to it, my professional background was really a double-edged sword at the onset of my journey as a parent of a child with ADHD. Yes, I had some knowledge of how to make the system work, but this time it was my child - it was often tremendously difficult to put head knowledge to work about the person I cared most about in this world. I found that while professionals openly accepted me as a member of my son's team, they often would forget to explain basic information that I was unable to remember because of my new role as a parent participant. I was overly hard on myself for making mistakes and feeling the full impact of the grief. After all, I went in knowing what it was all about!

As a mother, I spent my share of time wishing my son could be spared the challenges he faces. I spent so much time looking at the early challenges that I was in danger of overlooking his splendid gifts and talents. Jonathan and I had to break out of that mold. This was a wonderful kid with oodles of potential - I knew it and it was time to get him around other people that knew it. We both needed the boost. We both needed a circle of positive support. It took hearing from another parent in my profession to ease up on myself. She wisely said that just because I was "in the business" didn't mean that I didn't get the privilege of going through everything that parents go through when they learn their child has a disability. That was my first "ah-ha experience" of making a connection between what I knew in my head (my background) and what I needed to feel in my heart (I am first and foremost Jonathan's mom!).

When Jonathan's ADHD was diagnosed it was hard not to fall into step with the world's faulty message that people who have disabilities are somehow "broken". Trust me, the world is full of role models out there if you want to concentrate on the negative. I've always been an advocate of strength-based services but was finding it very hard to infuse this principle into services for my son. It seemed that at every turn a professional would give me information that highlighted another deficit, another negative. I found it very hard to operate with all this information and to deal with society's negative (and often incorrect) view of children who have ADHD. I wanted to concentrate on Jonathan's strengths!

When Jonathan and I were leaving a speech therapy session one day, the therapist, whom I had grown to trust immensely, told me that we needed to have Jonathan evaluated by an OT because she saw several problems related to motor planning and sensory integration. The now familiar "kick in the stomach" feeling hit me so hard that I had to lean against a wall for support. Although I knew she was right (I was observing the same things), it was a major blow because I viewed his athletic ability as one of his strengths. Slowly but surely I began to realize that Jonathan can have a strength and a challenge in the same area. I began to learn how much strength-based services helped me not give in to the urge to give up but instead to accept the emotions I was feeling as healthy and to move on. I began to realize that how I reacted to what was happening with my child had a big influence on how others perceived him. It was then that I began to talk openly about Jonathan having ADHD as well as the other "dance partners" associated with the condition.

I found that talking frankly about the challenges, and acknowledging what those challenges present to the people around him, put people in a better frame of mind. Yes, my child does have considerable "high energy". If the environment is full of stimuli, he can become a living ping pong ball. Bringing this out and talking about it helped everyone realize that they were supported and that we were not making excuses for Jonathan's behavior. With that foundation in place, seeing his strengths seemed to come almost naturally. It was easier to build a support system for Jonathan that would help him develop skills needed to channel his challenges into strengths.

Building a support system of family, friends, doctors, teachers, childcare providers, therapist, and church community that has a positive attitude toward Jonathan has been an imperfect process. In our search we still keep coming across people who operate by focusing on what is wrong or broken or unsuccessful. Every time we get into this situation, it has disastrous results.

Sometimes I've been quick to see a potential disaster, like the time I told a doctor to never tell any mother - including me - that she was "in denial" simply because she was asking what options her child has. We didn't go back.

Sometimes I've been too slow in responding and Jonathan has paid dearly for it - like the time that I learned that a childcare facility was locking him in what they called the "bad boy" room when he was having difficulty with his emotions. I found out about the room one day when Jonathan said that he was a bad boy and no one should ever love him. He was just three years old! We left the facility that day.

Our greatest successes have been with those wonderful people who are gifted in focusing on the positive. Most of these people unknowingly served as my mentors during our years of breaking out of the mold. For example, the speech therapist from Jonathan's school for the past two years shared with us such jewels as "Our kids just need more time on this earth to get it all right." This helped everyone keep the perspective that Jonathan may be developmentally behind in an area but he will catch up with the right support and in his own time. To help Jonathan begin the process of learning that taking medication is only one of the tools he needs to have self-control, she said, "The control is also within you, not just in the pill."

We've been blessed with the world's best teachers, therapists, family, and friends. Each one has done a beautiful job of helping Jonathan shape a positive self-image and learn strategies for dealing with his ADHD. They have all held up high expectations for him and cheered him on as he met them with glee. (Don't doubt for a minute that he didn't work hard for his successes - he has given it his all to achieve goals.) They've held mirrors up to both of us so that we could see his gifts: his artistic talent, wonderful sense of humor, and compassionate heart. I wish I could find the words to express how much their statements of his strengths helped me move beyond focusing on what wasn't right and to transition into a frame of mind where I'm confident that he will be all right.

James Ochoa summarizes it perfectly in his article when he says, "Although parenting ADHD children is a complicated process, the rewards are numerous." Jonathan and I have many years ahead of us as we grow through this process. Through it all, I'm sure that he will continue teaching me how to live life to its fullest. We will cherish our strong circle of support as helps keep us focused on our goals, reminds us to take care of ourselves, and celebrates the beauty of life's many special moments when Jonathan shines.

Editor's note: I asked Edgenie for a list of books that other parents might like to know about. Here are her favorite and most recommended titles:

Books for Parents

Driven to Distraction by Edward M. Hallowell, M.D. and John J. Retey, M.D.; Simon and Schuster.

Answers to Distraction by Edward M. Hallowell, M.D. and John J.Retey, M.D.; Bantam Books.

Attention Deficit Disorder: a different perception by Thom Hartmann; Underwood Books (the "hunter in a farmer's world" book).

Taking Charge of ADHD by Russell A. Barkey, Ph D.; Guilford Press.

Survival Strategies for Parenting Your ADD Child: dealing with obsessions, compulsions, depression, explosive behavior, and rage by George T. Lynn, M.A., C.M.H.C.; Underwood Books, Inc.

Great Children's Books

Shelley the Hyperactive Turtle by Debra Moss; Woodbine House Press (ages 3-7).

Sometimes I Drive My Mom Crazy but I Know She's Crazy About Me by Lawrence R. Shapiro, Ph. D.; CTAPS (ages 6-12).

Editor's note: Parents and professionals may also want to contact CHADD (Children and Adults with Attention Deficit/Hyperactivity Disorder), 8181 Professional Place, Suite 201, Landover, MD 20785; Phone (800) 233-4050, or (301) 306-7070; Fax (301) 306-7090. CHADD held it's Eleventh Annual Conference on Attention Deficit/Hyperactivity Disorder in Washington, D.C., October 7 - 9, 1999. To find out about future conferences and other information, contact them or visit their website at <www.chadd.org>.

Fall 1999 Table of Contents
Versión Español de este artículo (Spanish Version)

By Gretchen Hester

Reprinted with permission from reSources, Volume 10, Number 5, Communication Issue, Summer 1999, Published by California Deaf-Blind Services

My three-year-old son, Bruno loves to be active. I try to involve him in many activities with his cousins - swimming, carving pumpkins at Halloween, visiting the Discovery Museum, and the petting zoo. Swimming is a favorite activity for Bruno because he enjoys more freedom of movement in the water. He enjoys touching objects, toys, and pets. He loves his English bull dogs! We use books that have scents, shiny objects, and different textures to "read" to him. He will attend to a light box to play with his toys. He loves to be rocked back and forth, and to swing in his swing. For his birthday, I had pony rides and he enjoyed being on a pony although he was very medicated because of a big seizure the previous day.

When Bruno was born, the doctors told me that he would not live and I should just take him home from the hospital and let him die. He just celebrated his third birthday! Bruno has multiple disabilities which include severe epilepsy, developmental delays, cerebral palsy, a temperature regulation problem, and is cortically deaf and blind because of global brain malformations. He has agenesis (absence) of the corpus callosum (band of white matter that connects both hemispheres of the brain). He also has optic nerve hypoplasia in both eyes (it is much more severe in the right eye as compared to the left) and suffers from nystagmus as well. Bruno's medical needs have always been extensive so he has nursing care. He has been on many drugs to control his seizures, but they haven't worked. Last year, he started the ketogenic diet and that worked for a few months. Last October, he had a vagal nerve implant and that had helped him healthwise - but he still has seizures. Recently, he was in a study with Dr. Bill Good at the University of California, San Francisco. Dr. Good found that Bruno's myoclonic seizures affected his vision for several minutes after the seizure.

I've learned how to interpret Bruno's communication by watching him carefully. When I was working at the University of California, San Francisco, I noticed that when we went outside, he would stop breathing, throw his arms back, and turn blue. I didn't know if this was a seizure. This happened several times and then after a hospitalization (attempting to determine the cause of the episodes) I figured out that wind was frightening him so much that he would stop breathing. There was a sort of a "wind tunnel" as we went out of the hospital building. Bruno is still afraid of the wind but is able to continue to breath. When we last went ice-skating, he was terribly scared when the wind hit his face while he was in his wheelchair on the ice. He much preferred attempting to skate with me holding him. This way, we were going at a slower speed and there was no wind, as well as he was more involved and could tell what was going on with sensory input of the ice skates on the ice. He is scared when he is not sure what is going on since he can't see or hear things that approach him, even wind.

Often people who don't know him have a difficult time understanding him. They are not sure why he does not look at or listen to them. It is difficult for them to comprehend the idea of him as a deaf-blind child. Sometimes people will touch him on his face. He doesn't like this, and I believe it is because of all the tubes he had as a baby in the hospital. California Deaf-Blind Services and Jeri Hart from the Blind Babies Foundation have helped me learn how to communicate with Bruno. I use specific touch cues in particular situations. When he is in the hospital, I tap his toes before an injection or blood test. This warns him that something unpleasant is about to happen. At the swimming pool, I touch his lips to signal that he is going underwater. Before eating, I tap his hand that is holding the spoon.

When he was a baby, I started with scents during everyday activities to help him understand what was coming up. I put rosemary in his bath to signal bath time, lavender on his pillow so that he would know it was time to sleep, and he felt and smelled bananas and pears at meals when he was going to eat them. Once he got the idea that certain scents were tied to these particular activities, I paired them with objects (a rubber ducky was used with the rosemary scent before going into the bath). I used other object cues like a leash to mean that we are going to walk his dogs. Because of his cerebral palsy it is difficult for Bruno to make signs but I have added a few signs to his object cues. I speak to him at the same time that I make a sign on his hand or help him make a sign. I'm learning signs and how to adapt them for him. By his behavior, I know that he understands the signs for STAND, SIT, WALK, EAT, DRINK, and MORE.

I use "identification cues" to help Bruno identify familiar people. He touches their ring, watch, or they touch him in a special way. For example, his grandmother kisses him on both cheeks to greet him. His aunt sings to him by placing her lips on his face. Because he can't see or hear me, he likes being physically close; so if he is alone, he yells to get my attention. Bruno has a little piano that he likes to play; he'll push on the same button over and over again to get me to come over to him and reset it.

I was told that he would never drink or hold a bottle by himself, but now he does. I was told that he would never eat by himself. He doesn't as yet, but he holds his spoon and he loves eating, so eventually he will.

Editor's note: I was fortunate to see Gretchen speak about Bruno through a wonderful distance education program from the California Deaf-Blind Project. She presented with Dr. Deborah Chen as part of a workshop on developing communication in children with deafblindness. I want to thank California Deaf-Blind Services and Dr. Chen for allowing us to reprint Gretchen's article and an additional article, "Learning to Communicate: Strategies for Developing Communication with Infants Whose Multiple Disabilities Include Visual Impairment and Hearing Loss" which appears on pages 17-24 of this edition of SEE/HEAR.

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

Por: Shari Willis

Yo soy Shari Willis, presidenta de Katlyns Hope, Inc. Después de la muerte de nuestra hijita sordociega, mi esposo y yo comenzamos esta organización. Otorgamos becas a los niños sordociegos. Usted puede llamarnos al: (877) 677-HOPE (para papás únicamente). El teléfono para que otros llamen es el: (316) 326-6118. Nuestra dirección de Email es y nuestra dirección de correos es: Katlyns Hope, Inc., 303 South Elm, Washington, KS 67152. Muy pronto estableceremos un sitio en la Red, esperamos que para el 1° de noviembre.

El 15 de noviembre de 1998 CBS transmitirá la película "El lunes después del milagro" con Roma Downey en el papel estelar. Es la historia de Anne Sullivan y de Helen Keller durante la vida adulta de Helen. La película fue filmada en Lawrence, Kansas, y como resultado tuvimos la fortuna de conocer a la productora. Ella nos invitó a nosotros y a varios adolescentes al set de filmación y nos permitió hacer una gira del lugar y ver partes de la filmación. Producto de las reuniones que tuvimos con la productora ella hizo arreglos para que un anuncio de servicio público fuera mostrado al terminar el programa. Este solo dura diez segundos, pero dará toda la información pertinente de nuestra organización para que las familias puedan comunicarse con nosotros. ¡Estamos todos emocionados! La premiere de la película fue maravillosa, los recipientes de las becas se comportaron increíblemente, y le concedimos a un niño de 13 años (y a su familia) su sueño de ver la Estatua de la Libertad antes de que perdiera la vista que le queda, le regalamos para Navidad un viaje sorpresa a la ciudad de Nueva York. "El lunes después del Milagro" será transmitida por televisión el 15 de noviembre. ¡No deje de verla!

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

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

Padres provenientes de todas partes del estado se congregaron en Austin el pasado junio para compartir sus experiencias y planear para la continuación de los servicios de apoyo para sus niños que padecen del Síndrome Usher. Este grupo fue pequeño pero la experiencia fue poderosa, las familias compartieron sus temores y esperanzas para el futuro. El último día de la reunión estas familias desarrollaron un plan para poner en acción las actividades que a ellos les gustaría que se realizaran para ayudar a los individuos que padecen de este síndrome y a sus familias. Las metas que las familias establecieron para el próximo año son las siguientes:

  • Establecer un noticiero que se envíe a todas las familias de niños con Síndrome Usher. Este puede consistir de biografías familiares e inicialmente podría ser publicado en VER/Oír. Estas biografías y el noticiero serían desarrollados por los padres que asistieron al retiro y sería traducido al español.
  • Tener un retiro para padres, hermanitos, miembros de la familia y niños que padecen del Síndrome Usher
  • Ofrecer un taller de trabajo en orientación y movilidad para los padres y maestros que trabajan con estudiantes que padecen de Síndrome Usher. Este taller incluiría: actividades simuladas, oportunidades para aprender sobre los aparatos adaptadores e información sobre la enseñanza de O & M.
  • Desarrollo de un vídeo para las familias, incluso para los padres que han recibido recientemente un diagnóstico y también para esos que ya tienen más conocimientos sobre este síndrome.

Las familias también sugirieron otras actividades que podrían ayudar a promover la concientización del público y para ayudar a los individuos que padecen de este síndrome. Entre estas se encuentran: un sitio para conversar en la Red, grupos de apoyo para los individuos de 21 años o más que padecen de este síndrome, ponencias sobre el Síndrome Usher en la Conferencia Estatal de Sordos, Texas Focus y de la Escuela Diurna de Sordos, consultas en sitio, envío de información por correo y grupos de apoyo para las familias.

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

< http://www.earfinfo.com >
¿Desea informarse más sobre el audiograma? Conéctese a esta página en la Red, también obtendrá información sobre la compra de aparatos para el oído.

< http://www.gwha.com/projectos/hear/link/linkbody.html >
Esta página en la Red ofrece conexiones a una vaimpairedad de sitios que ofrecen información sobre la pérdida del oído. Vea un vídeo de implantes Cochlear u obtenga último en ASL. Este sitio lo puede llevar a ese lugar.

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

By Shari Willis

I am Shari Willis, president of Katlyn's Hope, Inc. Following the death of our deafblind daughter, my husband and I started this organization. We give scholarships to deafblind children. You may contact us at this toll free number: (877) 677-HOPE (for parents only please). The phone number for others to call is: (316) 326-6118. Our e-mail address is and our snail-mail address is Katlyn's Hope, Inc., 303 South Elm, Wellington, KS 67152. We will be getting a Web site very soon, hopefully by November 1st.

On November 15, 1998, CBS is airing a program, "Monday after the Miracle" starring Roma Downey. It is the story of Anne Sullivan and Helen Keller in Helen's adult years. The movie was filmed in Lawrence, Kansas, and as a result, we had the great fortune of hooking up with the producer. She invited us and several deafblind teenagers to the set, and let them tour the place and enjoy some of the filming. As a result of our meetings with the producer, she has arranged for a Public Service Announcement to air following the program. It is only 10 seconds in length, but it will give all pertinent Katlyn's Hope information so that families can contact us. We are really excited! The premiere for the movie was wonderful, the scholarship recipients were incredible, and we gave a 13 year-old boy (and his family), whose dream is to see the Statue of Liberty before he loses his remaining vision, a surprise trip to New York City for Christmas. "Monday After the Miracle" will air November 15th. Be sure to tune in!

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

http://www.earinfo.com Want to learn how to read an audiogram? Go to this web page to do this as well as get information about buying hearing aids.

http://www.gwha.com/projects/hear/link/linkbody.html This web page provides links to a wide variety of sites dealing with hearing loss. Take a virtual tour of the ear, learn about cochlear implants, or get the latest on ASL. This large, comprehensive site can take you there! 

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

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

Parents from around the state met in Austin this past June to share their experiences and plan for continued support in helping their children who have Usher Syndrome. The group was small but the experience was powerful, as families shared their fears and their hopes for the future. The final day of the meeting these families worked to develop an action plan for activities they would like to help bring about for families of individuals with Usher Syndrome. The goals the families established for the upcoming year are listed below.

  • Development of a newsletter to send out to all the families of children with Usher Syndrome. This may be a collection of family biographies and initially be featured in editions of SEE/HEAR.
  • These biographies and the newsletter will be developed by the parents from the retreat and translated into Spanish.
  • Have a Family Retreat for the parents, siblings, extended family members and children with Usher Syndrome.
  • Offer a workshop on orientation and mobility for the parents and teachers working with students who have Usher Syndrome which includes: simulation activities, opportunities to learn about adaptive devices, and information about O&M instruction.
  • Development of a videotape for families, including parents who have recently received the diagnosis and those who are further along in coming to terms with Usher Syndrome.

Families also suggested other activities that could help promote a better understanding of Usher Syndrome and help individuals with Usher Syndrome. These included: a chatroom or electronic bulletin board, support groups for individuals (21 and older) with Usher Syndrome, presentations on Usher Syndrome at the Statewide Deaf Conference, Texas Focus, and Regional Day School Programs for the Deaf, onsite consultations, targeted mailouts and a support group for families.

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

(Asociación de Sordo-Ciegos Multi-incapacitados de Texas)
por: Pat McCallum, Directora, DBMAT

Qué días maravillosos para nuestros Mesa Directiva fueron esos del Symposium en Sordera Ceguera durante el mes de febrero. Fue sumamente agradable conocer y platicar con tantos miembros de familias y profesionales que asistieron a la "Noche Social" del viernes y haber podido asistir a los dos días de conferencias. Nuestro agradecimiento al Proyecto de Servicios Sordo-Ciegos por ofrecernos la oportunidad de estar presentes. También agradecemos la ayuda que recibimos del Programa Sordo-Ciegos con Incapacidades Múltiples de la Comisión de Rehabilitación de Texas (TRC) quienes permitieron a los miembros de nuestra Mesa Directiva cuyo miembro de familia es mayor de 22 años participar en este symposium. Nos complace comunicarles que más de 30 participantes se hicieron miembros de nuestra organización. DBMAT, nuestras siglas (que se pronuncian DIBIMAT), ofrece la bienvenida a esos nuevos miembros y a esos que renovaron su membrecía y esperamos que esos que llevaron folletos a casa se comuniquen con nosotros.

Antes del Symposium, DBMAT trató varios asuntos importantes que afectan a los niños y adultos sordo-ciegos. Enviamos comentarios por escrito a los legisladores acerca de la "Enmienda Gorton" la cual se adjuntó a la Ley Propuesta 1998 Labor/HHS/Education Bill. Participamos en el Proceso de Estrategia de Planeación, y en enero sometimos comentarios escritos relacionados con los reglamentos propuestos para la nueva Ley IDEA (la ley Educación para Individuos con Incapacidades). A fines de febrero, uno de los miembros de nuestra Mesa Directiva testificó acertadamente ante TRC sobre el Programa Deaf-Blind Medicaid Waiver. DBMAT se esfuerza para ofrecer información sobre asuntos que afectan a las personas sordo-ciegas y para educar a esos en posición de implementar cambios positivos para las personas sordo-ciegas.

El último Otoño, DBMAt auspició la segunda reunión del Consorcio Nacional de Asistencia Técnica (NTAC), durante nuestra XXV Conferencia Anual de Familias. Durante esa reunión NTAC designó a DBMAT como la agencia principal para recibir asistencia técnica en Texas. La Mesa Directiva de DBMAT eligió trabajar para clarificar y expandir sus metas hacia el año 2000 y usar su experiencia para facilitar este proceso.

Inmediatamente después del Symposium, la Mesa Directiva de DBMAT se congregó, y con la ayuda de NTAC y Servicios Sordo-Ciegos y de un profesional planeamos las metas 1998 y 1999. Las metas para el año 1998 son:

  • Ofrecer apoyo para intervención temprana para los hermanitos. Esto se hará por medio de dos retiros anuales.
  • Desarrollar un plan para una posición de paga de Director Ejecutivo. Esto con la ayuda del per sonal para proveer continuidad, conexiones e identidad para DBMAT.
  • Ayudar en los esfuerzos estatales y locales para mantener el Texas Deaf-Blind Medicaid Waiver.
  • Desarrollar un Sitio Internet, e-mail, fax y otros medios de comunicación para ampliar nuestros medios de comunicación y darnos a conocer.

Las metas para el año 1999 son:

  • Desarrollar una red de coordinadores regionales
  • Proveer conferencias regionales, además de la conferencia anual estatal.
  • Duplicar el número de familias con las que tenemos contacto y a las que ofrecemos servicios.

DBMAT piensa que estas son metas ambiciosas pero que se pueden alcanzar si trabajamos arduamente juntos, y con la ayuda de nuestros amigos que nos ayuden a lograr nuestras esperanzas.

Por medio de nuestro proyecto Conexión de Padres, DBMAT continúa poniendo a los padres en contacto. El SIB STREET - (La Conexión de Hermanitos) ofrece a los hermanitos/hermanitas de niños con incapacidades sensoriales de platicar unos con los otros acerca de sus sentimientos, sus preocupaciones, así como aumentar su entendimiento acerca de ellos y de su hermanito incapacitado. DBMAT también ofrece tres grupos focales diseñados de acuerdo a la edad del familiar incapacitado, estos grupos son por edad: Educación (0-2 años), Transición (13-22 años) y Servicios para Adultos (23 o más).

Nuestra edición In Touch saldrá el primero de abril con muchas noticias para nuestros lectores; y la edición de verano contendrá información sobre la conferencia de Otoño. El costo por membrecía anual para hacerse miembro de DBMAT y recibir nuestro boletín es $5.00. Para más informes llame a DBMAT, 815 High School Drive, Seagoville, TX 75159-1737 o llame (voz o fax) (972) 287-1904.