A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1




Скачать 357.53 Kb.
НазваниеA collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1
страница1/7
Дата25.10.2012
Размер357.53 Kb.
ТипДокументы
  1   2   3   4   5   6   7
SEE/HEAR


a quarterly newsletter

ABOUT visual impairmentS and deafblindness

for families and professionals

A collaborative effort of the


Texas School for the Blind and Visually Impaired

And Texas Commission for the Blind

Winter 2003 VOLUME 8, No, 1



Table of Contents


FAMILY


I Love my Life, Swimming, and Texas Longhorns!..…………...3


Journeys Through the Land of Oz:

Parents’ Top Twenty Strategies for Managing Life.…….…...6


Gifts from my Sister.......…………………………....……..........15


Brothers and Sisters: Strategies for

Supporting Siblings Of Children who are Deaf Blind..……..17



Becoming your Child’s Best Advocate…………………………19


Leading the Way to Success……………………………………22


PROGRAMMING


Key Elements for Effective Assessment of

Children who are Deafblind……………………………........27


Planning your Child’s

Individualized Education Program (IEP)

Some Suggestions to Consider……………………………...31


Notice: New Special Education Documents from TEA……....34


Assistive Listening Devices………………...............………..…37


Teaching a Blind Student How to Graph on a

Coordinate Plain: No Tech, Low Tech, and

High Tech Tools...…………………………………………......42


Distance Education…………………………………...………….46


The Early Braille Readers Project…………………..………….49


SYNDROMES/CONDITIONS


FDA Public Health Web Notification:

Cochlear Implant Recipients May Be at

Greater Risk for Meningitis.……………………………….….52

Meningitis………………………………………………………….59


NEWS & VIEWS


TCB and Other State Agencies Await 2004-2005 Budget…...63


The National Agenda…………………………………................65


The National Agenda – A Parent’s Perspective...........…..…..66


What’s Looming Ahead? A Legislative Update......….…..…..68


Announcing SibKids and SibNet Listservs..............…………..70


Providing Hope and Encouragement for Parents of

Child with Disability Goal of New Book..………………….…71


Applicants Wanted for Weeklong Youth Leadership

Program Next Summer……..………………………………...75


Classified……………………………………………....……….....78


I Love My Life, Swimming, and Texas Longhorns!

By Alberto Gonzales, Austin, TX


Editor’s Note: Alberto, a keynote speaker at the Deafblind Symposium held February 7-8, 2003 in Austin, wanted to share some of his thoughts with SEE/HEAR readers as well.


My name is Alberto Gonzales. I was born in San Antonio Texas in 1973. I was born deafblind due to Congenital Rubella Syndrome, but had some useful vision as a child. I can remember seeing leaves falling from trees, grass, and cars going by. I used to love swinging at the playground and running around my mother’s yard. By the time I was nineteen, I lost all usable vision.


I attended Japhet Elementary where I began learning sign language, Grade I Braille, and how to use a cane. In the sixth grade, I attended Martin Luther King Middle School and began learning Grade II Braille. As a mainstreamed student at Sam Houston High School, I studied English, P.E., Biology, Homemaking, Health, Math, Computer Skills, and Government. I also benefited from “Vision Class.” My teacher, Gail, helped

me develop my mobility skills, learn to cook, and oriented me to fun activities that I could participate in. We played Scrabble, Poker, Dominoes, and Uno.


After I graduated from high school in 1995, I came to Austin to get training at the Criss Cole Rehabilitation Center. I continued Orientation and Mobility training to improve and maintain my skills, as well as become familiar with a new city. In addition, I received technology training, career guidance, and worked on communication skills. I participated in CCRC’s apartment experience to help me with my transition to the Deafblind Apartment Program. I attended training for eight months, then moved to the Deafblind Apartment Program. I was 21 when I moved into my first apartment. My family was scared about me living alone at first, but now they know that I can be independent and safe. My mother still wants to hear from me every week, though.


I really enjoy Austin, living in my own apartment, and all my friends at the Deafblind Apartment Program. In the summer time, I love to go swimming with my friends in the apartment pool. Sometimes we barbecue, too. I know the UT Longhorns are a very good football team. They beat the Aggies 50 to 20. The Aggies are not good, thumbs down.


I can do many things myself. My personal alert system lets me know when someone is at my door, when the telephone rings, or even if my fire alarm sounds. I arrange my own transportation to work, church, and to visit my friends. I can call anyone I want by using my braille-TTY and Relay Texas. Staff is there to assist me with things like reading mail, budgeting, doctor appointments, and employment.


I attended classes at Austin Community College and currently work at Chuy’s Mexican Restaurant. It was necessary to continue with O&M training at ACC to become oriented to the campus and at Chuy’s so I could find my way around the restaurant with minimal assistance.


I know it is important to maintain good mobility skills to continue an independent life-style. In July, 2001, I flew to Michigan and stayed at the Leader Dog School for one month. My leader dog’s name is Kersey. She is a female black lab and is three years old. She knows sign language like sit, laying down, right, left, etc.


I am a very experienced traveler. I have traveled to Dallas, San Antonio, and Seattle by myself. My mobility and communication skills allow me the freedom to take the bus or fly anywhere I want. In the summer of 2000, I went to Mexico with my family. I love deafblind camps like the Deafblind Retreat at Seabeck in Washington and Pineville Louisiana. Also, I am trying to save money for the next AADB (American Association of the Deaf-Blind) Conference in San Diego this July. I have also heard there will be a TBDA (Texas Deaf-Blind Association) meeting soon.


I have a new church. My church is Westover Hills Church of Christ. I was baptized on November 17 and became a new member November 24. It is a very, very pretty church. I go to church every Wednesday and Sunday. I read the Bible and have a deaf interpreter there.


My girlfriend Mary Ellen lives here. We have been together for 4 1/2 years. Mary Ellen is blind. Now she knows sign language, which I taught her a long time ago. Mary Ellen and I went to the

Holiday Inn for her prom on May 9, 1998. My dream for the future is to be married, live in a nice house, and to have a good job.


Journeys Through the Land of Oz:

Parents’ Top Twenty Strategies for Managing Life

By Kate Scorgie, Ph.D.,Associate Professor of Graduate Education, Azusa Pacific Univ. and Lorraine Wilgosh, Ph.D.,

Dept. of Educational Psychology, University of Alberta

Reprinted with permission from Exceptional Parent,

November 2002


In her book When the Heart Waits, Sue Monk Kidd portrays Dorothy’s journey in The Wizard of Oz as an allegory for overcoming life crises. Until the tornado came, all Dorothy had ever known was her simple life in Kansas with Toto, Aunt Em and Uncle Henry. When the devastating event occurred, Dorothy was catapulted from her familiar surroundings to the often-bewildering Land of Oz.


The remainder of the book was the story of Dorothy’s profound longing for her home and her subsequent wanderings through Oz in order to find it. Dorothy was told that the way home would involve a very long journey, “through a country that is sometimes pleasant and sometimes dark and terrible.” Kidd reminds us that at some time in our lives, each of us will encounter a “tornado” experience and, like Dorothy, we may find ourselves in a strange land with no road map and a few recognizable landmarks, longing for our former familiar lives.


Dorothy navigated her way through Oz with the assistance of three new friends she met along the way: a Scarecrow who needed a brain, a Tin Man looking for his heart and a Lion seeking courage. Kidd claims that these characters are sent to remind us that in the midst of any life crisis, what each of us needs for safe navigation “home” is a new way of thinking, a new way of feeling and a resolve to persevere.


For the past several years we have been talking to parents about their journeys in parenting a child with a disability. We began by conducting extensive interviews with 15 parents whose children have a variety of conditions. As they narrated their journey from the initial diagnosis to the present, we asked them to share specific strategies they found effective for managing their personal and family lives. We then developed a survey instrument that we sent to two larger groups of parents. We asked them to indicate how important each of the strategies mentioned by the first group of parents had been to them as they parented their children. In particular, we were interested in documenting life management strategies that were deemed effective by the large majority of parents, regardless of child age and disability.


We have collected information from more than 200 parents. They described how the diagnosis of disability catapulted them into a bewildering new world. They shared the things that both helped and hindered them along the way. And they spoke powerfully of how, though the years, they have developed new ways of thinking, new ways of feeling and a determination to stay the course.


After analyzing these stories, we were able to document a number of strategies that parents held in common. We call these the Top Twenty Strategies for Effective Life Management, and would like to share them with you through the words of parents.


Celebrate your child

“My advice to a parent of a child newly diagnosed is, first of all, just to celebrate the birth of this child. Just to enjoy the child…because everyone else will try to give him a label.” [mother of a nine-year-old son with severe multiple disabilities]


ChOosE to focus on what’s going right

“I dwell so much on the positive that you would think Ryan was actually pretty high functioning {though} he’s very, very limited in what he can do. But I don’t look at those things. I think it’s much easier to celebrate the little successes and sometimes they’re minuscule. You have to look at the positives and the little successes and dwell on those.” [mother of a nine-year-old son with autism]


Get beyond the “why?” to the “how?”

“If we could all just accept our kids and teach them they’re pretty great just the way they are…the sooner you do it the better it is. Pretending like they’re gonna get well later – oh, I went through that phase. It was always some miracle that was going to happen. But that’s all dead time, all ‘no growth’ time for you and your child. So the sooner you can say ‘This is how it is. Let’s go forward from here,’ the better it is for everyone!” [mother of an adult son with profound hearing impairment]


Appreciate what your child contributes to others

“Last year one of Jana’s friends wouldn’t go to Brownie camp unless Jana went. This friend’s mother phoned me, desperate, weeks before camp: ‘Jana’s not getting sick, is she? She’s still going to go, isn’t she? Because my daughter will not go without Jana.’ And so we learned that Jana is a support to her friends, she does contribute. And those are the things we need to start looking at.” [mother of a nine-year-old daughter with Down syndrome]


Trust your instincts

“After two years [of preschool] I felt very frustrated. I used to leave there crying, thinking, ‘Why are you letting them do that to him and treat him like that and talk to him like that?’ But slowly I developed the confidence to decide I don’t have to be this way any more! Now I think there’s nothing that I couldn’t do if I set my mind to it.” [mother of a nine-year-old son with autism]


Don’t go it alone: ask for help

“I needed to take my daughter to another city for treatment and we didn’t have the money to pay for the airline tickets. I was moved to phone our minister – I’d never ever asked for help from this church before, but I called and explained our situation. They were able to give us some financial help. And the minister phoned down to some families in that city and asked if someone could meet us. So a couple met us at the airport. They put their arms around us and kept them around us six whole weeks. And when we came home I realized that it wasn’t Mandy who had had the healing, it was me. And it sort of turned my thinking around: I learned that you don’t get help unless you ask for it. As long as people think you’re okay, they leave you alone.” [mother of a 17-year-old daughter with moderate developmental delay]


Reassess success

“You have to learn to come up with your own definition of what a successful child is, and not bow to the theory that the successful child is going to grow up, get married, have a good job and do this and that. You have to say, ‘Well, for our child, it will be different. For him success might be something else.’ You have to throw out the old definitions. As long as he’s happy at what he’s doing, why should we define [what] happiness [is]?” [father of an eight-year-old son with pervasive developmental delay]


Utilize planned perseverance

“I spoke with a resource person and she said, ‘Every year you’re going to have to address these same issues: Who’s going to be the teacher? What kind of support is there going to be and will that be sufficient for my child? Every year you’re going to have to address this. Just put it on the calendar.’” [mother of a six-year-old son with an undiagnosed genetic condition]


Be a parent first

“There’s one thing I’d do differently now. When we found out Jeremy was hearing impaired, I signed up for a course, ‘How to work with your hearing-impaired child.’ And all of a sudden I turned into his teacher instead of his mother. But finally, a few years ago, I just woke up and said, ‘I’m sorry. I’m not doing this. I’m not going to sit across from the table and force him to do this. I’m just going to practice being his mother.’ And I’m much happier. I feel it was like a weight lifted off me.” [mother of an 11-year-old son with cerebral palsy and profound hearing impairment]


Keep your sense of humor

“The stories about Nathan have become family tradition. Lots of families have stories that they tell and retell. But the Nathan stories in our family are the funniest – he’s just hilarious. Oh, there have been lots of stressful times. For every funny story there are probably 10 or 20 difficult stories – stories of challenges and trials. But it’s the funny stories that keep you going.” [mother of an 11-year-old son with Down syndrome]


Be flexible day to day

“Because of her illness, how Laura feels fluctuates a great deal. So I wrote a list called White Days, Gray Days and Black Days. On ‘white days’ [the good days] I might go to the park, go out, cook dinner, make the most of a day when Laura’s feeling well and has some energy. ‘Gray days’ [in-between days] I still put things on my list, like cook supper–but it’s more like sit and watch a video with Laura, read books, or go to work, as she can still go to the babysitter on gray days. On ‘black days’ when she’s really ill, we might order pizza or, if there are plans, change them.” [mother of a seven-year-old daughter with degenerative metabolic disorder]

  1   2   3   4   5   6   7

Похожие:

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconA quarterly newsletter about visual impairments and deafblindness for families and professionals a collaborative effort of the Texas School for the Blind and

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconLightHouse for the Blind and Visually Impaired

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconMichigan Council of the Blind and Visually Impaired

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconCalifornia Transcribers and Educators for the Blind and Visually Impaired

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconProviding Learning Support for Blind and Visually Impaired Students Undertaking Fieldwork and Related Activities

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconMichigan commission for the blind staff present

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconThe Hadley School for the Blind est. 1920

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconAbbott, J. C., K. W. Stewart, and S. R. Moulton, II. 1997. Aquatic insects of the Big Thicket region of East Texas. Texas Journal of Science 49: 35-50

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconTexas a & m university Central Texas

A collaborative effort of the Texas School for the Blind and Visually Impaired And Texas Commission for the Blind Winter 2003 volume 8, No, 1 iconTexas a&m university – central texas

Разместите кнопку на своём сайте:
Библиотека


База данных защищена авторским правом ©lib.znate.ru 2014
обратиться к администрации
Библиотека
Главная страница