A quarterly newsletter about visual impairmentS and deafblindness



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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]


Give yourself a “time out”

“I have one night a week and it’s mine. I need it. I always have something to look forward to and that’s what gets me by. I forget about everything for an evening and go out with my girlfriends. I know none of them can relate to what I go through. They have stress and they have so-called ‘normal’ kids. If they need one night out a week, I probably need three. But, yes, I just go out and try not to worry about it that night, and somehow the next day it doesn’t seem that bad.” [mother of seven-year-old triplets with moderate to severe developmental disabilities]


Allow yourself “ups” and “downs”

“Even though I say I have accepted everything that has happened with Jason—yes, I have accepted it. But there are always times when I will hear a song on the radio and all of a sudden it will hit me, ‘he’s never going to hear that exactly like I do.’ I will go through the grieving process again, and I will cry. And then away I go and I’m okay. I think this is just a life-long thing. He’s going to be my baby even when I’m 80 years old. And I think it’s okay to give yourself permission to keep feeling.” [mother of an 11-year-old son with cerebral palsy and profound hearing impairment]
Remember to nurture your marriage

“Court your wife. You know she’s gong to be stressed out, and so will you, and you will need each other. Do what you need to find time to be with each other. Go to dinner – go to a movie – do whatever you want to. Find time when you can be away from the demands and just be together.” [father of a 12-year-old daughter with severe developmental delay]
Be a family

“As a parent, you have to set an expectation to make things happen. One thing we do is go to a lodge in the mountains. The whole family goes, and you think, ‘Yes, we can still do things as a family.’ And we’ve always insisted that we eat breakfast as a family. Sometimes our kids complain, but I think it’s important to be together as a family.” [mother of a nine-year-old son with severe multiple disabilities]
Balance time together with each of your children

“My son once said, ‘You really do like Tommy much better than us, don’t you?’ I asked why, and he said, ‘You’re always spending time with him and you’re always holding him.’ Well, one thing a experience like this does to you is make you think consciously about a lot of things you never

thought about before, like spending time with your other children. And I guess it’s not being afraid to talk to your kids about the situation, either.” [mother of a nine-year-old son with multiple disabilities]
Know what you want and go for it

“I think the ability to problem-solve is very valuable. Don’t take ‘no’ as a final answer; take it as a definite ‘maybe’ and go from there. A lot of times they say ‘no’ because they think you’re going to go away. What you need to do is try to analyze the situation. If you do your homework, are well prepared, and make a legitimate argument, oftentimes people will listen.” [mother of a 25-year-old son with Coffin-Lowry syndrome]


Be resourceful: find ways to be understood

“A neighbor came in one morning and we spent a morning taping Rachel in spasm, just to show the work that was involved in caring for her. We did it for the medical profession, because they couldn’t understand my story. So I have it on video. I have shown it to social workers, too, and I think it would be a good tool for group homes so they can be prepared for the kind of help needed.” [mother of a 17-year-old daughter with moderate developmental delay]


Connect with other parents

“I feel it is extremely important that parents of children with disabilities make contact with each other, because there’s nothing like speaking with somebody who’s in the same boat. There’s something that draws us all together. If I’m having difficulty with something, I will not call the professionals. Other parents are the first people that I will call. I will ask another parent, ‘Did you have to deal with this? How did you handle it?’” [mother of 11-year old son with cerebral palsy and profound hearing impairment]
Value the journey

“When I look back I realize my son has been a wonderful teacher to me. He’s had an impact on so many lives – that’s the wonderful part. When Chris was young I used to think I had to know [right now] everything he’d need to know. In time I learned that as Chris grows, I will grow. And I will have the knowledge needed to meet his challenges. It was very important for me to recognize that.” [mother of a 15-year-old boy with Down syndrome]


These are twenty of the life-management strategies most often mentioned by parents in our studies. Every family that participated in our study was diverse, complex and unique, and each employed the strategies in a way that was unique to their family situation. It seems that there are many paths through the Land of Oz and through working together parents can create useful roadmaps and identify familiar landmarks.
Gifts from my Sister

By Susannah Kenley, age 19, San Francisco

Reprinted with permission from reSources, Vol. 10, No. 14 (California Deaf-Blind Services).
Growing up as Laura’s older sister hasn’t always been easy, and without laughter I hardly think I could make it through. Tears and laughter, pain and happiness, embarrassment and pride, and thousands of other emotions have all been a part of the adventure of being an older sister to a sibling born with CHARGE Syndrome. Being born with CHARGE, Laura does not hear, is extremely vision impaired, and has heart defects. But besides all of that, Laura is a goofy teenager with lots of personality, strong likes and dislikes, a very smart and pranky sense of humor, and a little attitude to go along with her age of seventeen. Laura is an extremely complex girl. And living with her has been no less if not more complex than Laura herself. Laura has made me feel thousands of different ways. She has made me want to crawl under the table at a restaurant and hide from people staring, scream out in frustration, punch a wall, slam doors and cry. But Laura can also make me laugh like no one else can.
Just like any other relationship between family members, Laura and my relationship has gone through many phases, both good and bad. The one thing I can say for sure is that over the years, being Laura’s sister has become a lot easier. I can’t ever remember a time in my life when Laura was not my little sister; she was born when I was only two years old so she is a part of nearly all my childhood memories. I even went to preschool with Laura at the San Francisco Hearing and Speech center for a few years. I loved going to school there because I could not only hang out with my baby sister, but I learned how to sing kids’ songs using sign language and hang out with kids like myself and like my sister. Although I was not aware of it then, being in an environment like that let me know that I was not alone and that there were other kids like me who were siblings of deaf children. Trips to PAAVI—an early intervention family training project—and

Easter Seals to play were also wonderful experiences for the same reasons. Going to summer camps that focused on families of children with disabilities were always exciting places to play, relax, and also to spend time with people who were dealing with the same life experiences that I was. I will always be thankful for the opportunities my parents gave me to get involved in the deaf-blind community at such an early age. Spending lots of time with Laura when I was very young is probably the reason why the two of us have stayed so close over the years. Having fun with Laura when I was young set the tone for the type of relationship I have with her now. Laura’s life is full of doctors, teachers, therapists and caretakers. Being involved in Laura’s social life from the start has let me know that I do not have to be another doctor or teacher of Laura’s, and it is okay for me to just be her sister and friend.


It is easy to feel responsible for a sibling with disabilities, especially if you are older than they are. My parents have helped me work through that by explaining that I am not now and never will be the only one responsible for Laura. Although I know I do need to help out with her, I also know that my parents are doing the best that they can to support Laura, even in case something should happen to either of them. Wills and future living situations and dreams for Laura have all been explained to me, so I have never been left worrying whether or not I will be spending my time as an adult caring for Laura. Communication about these real-life, real-world issues has made me feel comfortable about being Laura’s sister in the future. Having Laura as my little sister has undoubtedly changed the way I look at myself and at the rest of the world. It has taught me how not to get embarrassed so easily, how to

deal with the unexpected, and how to appreciate the little things in life (like the fact that dinner has not been thrown all over the kitchen for once, or that no one threw a fit in the middle of the shopping mall). But more than that, Laura has taught me that lots of people out there need help (myself often included). Because of Laura I have chosen Sociology as my area of study in college, and have spent spare time volunteering in California and Louisiana. But most importantly, because of Laura I am able to look at life in an extremely positive way and with a sense of humor, and although that may sound cliché it is the truth. Not many people can or ever will be able to appreciate life and its blessings the way that I can and my sister Laura is the person I have to thank for those gifts.

Brothers and Sisters: Strategies for Supporting

Siblings of Children who are Deaf-Blind

by Jackie Kenley and Myrna Medina, CDBS Family Specialists

Reprinted with permission from reSources, Vol. 10, No. 14 (California Deaf-Blind Services).
Brothers and sisters who have siblings with combined hearing and vision problems are first of all people and important members of the family. Siblings will probably want to know why this happened to their brother or sister and how it will affect them personally. This is especially important at the time the family is dealing with a new diagnosis; siblings need to be remembered at these times and have their questions answered and their concerns addressed. It will be helpful for siblings to understand exactly what and how much their sibling may see and hear, and about additional disabilities the sibling

may have. Being open and actively listening to siblings may be tough for parents as they deal with a child who is deaf-blind, but these conversations are likely to be as healing for the parents as they are for the siblings.


Things to consider:

Emotional Stages. Learning to live with a child who is deaf-blind requires going through all kinds of emotional stages—anger, grief, sadness, hope and acceptance. To help deal with these emotions, it’s a good idea to meet other parents of children with disabilities, share stories with them, and attend family support groups. Many times these various emotions come up at different times for individual family members. Birthdays and holidays are often tough on families, and this should be remembered and worked through as a family. For birthdays, sometimes it is very nice to celebrate each member of the family separately, if financially possible; if not, do not feel guilty about celebrating the siblings in a special way, or siblings might think there is a preference for the child who is deaf-blind.
Take a break! Giving the family a break from the responsibilities of caring for a child who is deaf-blind may be helpful, and provides family members the time to concentrate on other relationships in the family. Respite care or camps are a good idea for parents and siblings. Each child in the family has a need for individual care and attention, and giving this attention may require special effort and energy from parents. It is important for professionals working with the child who is deaf-blind to let the family know that it is okay for them to say we are tired, or we need help, and also emphasize that theyare there to serve the entire family, not only the child who is deaf-blind.
There are positives as well as negatives. Having a sibling who is deaf-blind can have both positive and negative effects on the family. Different “behaviors”, surgeries, and illnesses are tough on all family.

Becoming Your Child’s Best Advocate

By Mary Zabelski, President, National Association for Parents

of Children with Visual Impairments (NAPVI)

Reprinted with permission from Awareness, 2002 Special Double Issue.


Editor’s Note: Awareness is published quarterly by The National Association for Parents of Children with Visual Impairments, Inc. To become a member or to order any of NAPVI’s publications, contact them at P.O. Box 317, Watertown, MA, 02471-0317, 1-800-562-6265, or .
As your child passes through the educational system, you will need to acquire knowledge and information about the educational issues facing him or her. As a matter of fact, you will need to become your child’s “best” advocate. You will find yourself working on behalf of your child, to make sure that the specialized educational services, guaranteed in the federal laws, are actually available in your state or local school district. We want our children to reach their full potential. To do this, they much have equal access to the classroom materials like their sighted peers. In a perfect world, all of the specialized services that the educational and civil rights laws entitle our children to receive, would always be available and easily obtainable. In this real world of ours, the full range of necessary services may not be available unless you actively work on acquiring them or “advocating” for them.
As your child’s advocate, you may have to deal or bargain with your child’s school district or local school to acquire the necessary services. Services mean the specialized teaching from the special education teacher, vision teacher, orientation and mobility instructor, and other related therapies (e.g., occupational therapy, physical therapy, speech therapy). You may find that you need to arrange for or “negotiate” for services through discussion and settlement of terms with the local educational personnel. Sometimes the services are not readily available and you will have to present your request in writing or through meetings with the educational staff, special education administrator of the district or the principal. The parents’ role becomes critical to the success and positive educational experiences that can occur. More importantly, your involvement in decision-making is the key to developing a positive and meaningful educational program for your child.
You may think that the professionally trained teaching staff automatically knows what is best for your child. This is not necessarily the case. Remember, most pre-school, elementary and high school teachers have no training that helps them to understand what modifications and accommodations students who are blind or visually impaired, deaf-blind or multi-disabled, might need to properly access their textbooks and materials like their classmates. Remember that you have more information about your child’s medical issues and the visual/medical diagnosis than the school personnel do.
It is important to recognize that the regular classroom teacher may not be familiar with your child’s visual disability and how to provide the specialized services your child needs. When discussing the need for specialized services, the regular classroom teacher and the special education or vision teacher should be present. You may want to ask for a meeting to discuss these issues before the formal IEP meeting.
If your child has problems in school because of the lack of specialized services or a need for a change in services, you will need to speak up and negotiate for them. IEPs should be developed jointly, between school personnel, service providers and parents.
When my blind daughter was in the lower grades, I wanted her to develop the skills that would help her to be independent as she got older. I knew that she had to learn how to travel independently, learn to take care of her belongings, dress appropriately and develop friendships with the other students. I wondered what kind of job she could hold as an adult, considering she was “blind”. You as the parent, may be thinking about these issues, but the regular classroom teacher is generally not trained to look ahead. Many skills that are necessary will not be taught in the school your child attends. You should discuss these skills with the special education teacher and other therapy staff, so that you can work toward these objectives in school and at home. Each one of our
children has a different area of strength and need. We can help them if we think about what skills they need to develop for future success in the real world, and advocate for the services to help them attain these skills.
Leading the Way to Success

By Will Conrad, Student, Rice University, Houston, TX

With forward by Ann Adkins, TSBVI Outreach Consultant and Will’s former TVI
Forward: Will Conrad, a sophomore at Rice University, is often asked about his experiences as a visually impaired student. Will was one of ten Rice freshmen featured in the spring, 2002 edition of The Sallyport, the Rice alumni magazine, and will be followed by the publication for the next four years. A former TAER Student of the Year Award winner and member of the Texas Commission for the Blind LITE (Leadership in Transition with Excellence) Committee, Will’s extracurricular activities are as extensive in college as they were as a student at Westlake High School in Austin (Class of 2001). They now include more activities to help prepare him for a career in law. For two summers, he has served as an intern with the State Office of Risk Management (SORM), General Council Division, and he plans to study in Scotland next fall. We have also included some excerpts from a personal letter he wrote for a scholarship application that tell a lot about this young man.

While these articles show some of Will’s accomplishments and his “academic side,” they can’t convey his personality and sense of humor. For example, when he walked off the stage into the orchestra pit after being inducted into the National Junior Honor Society, seventh-grade Will responded to the gasps from the audience with, “Guess I should have used a cane, huh.” He refers to his fall off the stage as “his swan dive.” As his TVI for five years, I enjoy sharing “Will stories” with my colleagues and other students and parents. One year, on a mission trip to Mexico, he helped the youth group of his church build a fence. Unfortunately, he hammered the arm of the girl working next to him instead of the fence. When I learned that he was taking a girl from his church to the prom, I couldn’t resist asking him if he used a hammer to convince her to be his date. It wasn’t the same girl, but Will was prepared for my questions, just as he continues to prepare himself for his studies at Rice and his life as a young adult who is visually impaired. His challenges include making the transition from print to Braille, using a cane, mastering complex technology, and learning to be his own advocate–the same challenges faced by many visually impaired students. Being visually impaired is only one aspect of Will’s life, however, and only one component of his success. He moves ahead with a sense of humor, as well as excellent skills, and is truly “leading the way to success.”


Excerpt from The Sallyport article, “All Roads Lead to Texas”:
Will Conrad is truly Texas proud. When another freshman was asked why he decided to come to Texas from the East Coast to attend college, Will piped up, “Because everybody comes to Texas. It’s

the greatest state. You can’t deny it—you’re all here!” And Texas isn’t the only thing Will’s crazy about. “My first semester has been a blast, and I’m really excited about my major, political science.”

Will’s enthusiasm, confidence, and determination don’t necessarily set him apart at Rice – most Rice students are very involved and passionate about their education and their futures. But Will, who is legally blind, has to work just a little bit harder at everything he does, which is what makes his accomplishments – and genuine zeal – so remarkable. From navigating the Rice campus to making sure he gets his books on tape well before each semester begins, Will’s got his hands full. But it’s not his visual impairment that is posing a challenge this semester – he’s been dealing with that since birth – instead, it’s the 15 credit hours, 35-page papers, and busy extracurricular schedule.
Will is involved in the Rice College Republican, Reform University Fellowship, the Baker Associate Committee, Campus Crusade for Christ, and the Intervarsity Christian Fellowship – activities that reflect the strong influence his faith has on his life. He credits a high school mission trip to Juarez, Mexico, with shaping the person he’s become. The trip, which included running a vacation Bible school, put his faith into action and established an identity that, he says, “has carried into my groups and friends at Rice.”
Will also has put his interest in practicing law into action by serving on University Court, which he says “allows me to get some experience with law while learning about the Rice judicial system and helping the university with discipline.” Sounds perfect for someone whose enthusiasm for justice is as big as the state of Texas.
Will wrote the following as a response to a question on a scholarship application:
With my first year at Rice University just completed, I have experienced and learned many new things. Navigating the campus proved no challenge after my first week when I became lost once. Using the knowledge that the cars travel one-way around the intercampus loop, I was able to resolve the situation quickly and return to my dorm. After this experience I had the confidence to not only travel around campus myself, but to provide visitors with directions. The rigorous academics at Rice challenged and stimulated me to seek new knowledge. I have chosen to study the field of political science stemming from courses in high school, and my passion for the subject has only expanded. This excitement about my studies results from the professors and their willingness to spend time with all students. The professors not only invite students to their offices during office hours; they will usually eat lunch in a college where any student may join them. I have had lunch with several professors and we discussed everything from college life to politics. This relationship with my professors promotes self-advocacy for necessary adaptations.
Even though I have made A’s at Rice, I have really learned more outside the classroom through participation in extracurricular service activities. Rice University Court represents

an activity that I have particularly enjoyed. The Rice U-Court assesses punishment for violations of the code of student conduct, the alcohol policy, and criminal law. We use community service as a means of constructive sentencing. I serve on the court as the vice chair who investigates the different cases. I have worked with the chair of the court to purchase a computer with scanning features so that I can independently read the police reports. I have also served the Rice community by my involvement in the variety of campus ministries. One Tuesday each month I accompany other members of Intervarsity Christian Fellowship to the Palmer Way Station to serve breakfast to the homeless. With Reformed University Fellowship, I plan to take a weeklong mission trip to Prague in the Czech Republic. While on this trip, I will serve not only the Rice community, but also the international community. I have experienced three major benefits from helping others: it makes me feel good, it accomplishes something for the other person, and it helps me grow in my relationship with God.
I have tried to prove to professors, fellow students, and particularly to other handicapped persons, that a blind student can be a leader in academics, school service work, and other community services activities. I believe that I have succeeded. (Editor’s Note: We believe you have too, Will!)
Key Elements for Effective Assessment

of Children who are Deafblind

Prepared by Evelyn P. Kelso, M.A., Educational Consultant,

ATECH/ASSETT, New Hampshire

Reprinted with permission from in touch, Summer 2002,

the Newsletter of the New England Center Deafblind Project
Children with deafblindness or multiple disabilities tend to experience the world as it exists within their immediate reach (Miles, 2000). Many of these children may have some residual vision and/or hearing. However, the combination of this dual sensory impairment limits the extent of interaction they have with people, access to information about events and objects at a distance, incidental learning acquired just by seeing and hearing, and development of meaningful concepts about home, school, and community. School teams must assess these children differently from other students to effectively address their unique learning needs.
Successful assessments should include:
#1: FAMILY PARTICIPATION

• Incorporate active family involvement throughout the assessment process.

• Interview the family regarding their priorities, immediate goals, and long term dreams.

• Include family input in planning assessment activities.

• Use family members to facilitate some assessment activities, as they are familiar and trusted by the child.

• Give attention to any family concerns that remain following assessment.


#2: TRANSDISCIPLINARY ASSESSMENT GUIDELINES

• Assessment of the child across natural settings (i.e. home, classroom).

• Selection of a variety of familiar, everyday activities where different skills can be assessed.

• Use of a transdisciplinary team approach in which educational team members share knowledge from their areas of expertise for other team members to incorporate in their practice.

• Follow-up team assessment by using information to plan the educational program.

• Focus IEP goals and short-term objectives on behavioral skills to be developed or expanded.

• Conduct ongoing assessment throughout the school year, with changes to the IEP made as the child masters critical skills (short-term objectives).

#3: ASSESSMENT STRATEGIES

• Base interactions on data in most recent vision and hearing reports. Select toys or other objects that use the child’s preferred colors, textures, and sounds. Present the objects in the positions where the child has the best vision and hearing. After the child is engaged, move the toys to varying positions to assess any response.

• Use the child’s current communication program if one exists. Interpret the child’s changes in behavior as communication, and prolong the exchange to learn more about how the child communicates.

• Select a single team member to act as activity facilitator to decrease the number of people with whom the child will interact.

• Choose activities based on family routines.

• Include components that apply to classroom instruction and appropriate age level activities.

• Ask the child to make choices, follow steps in a routine, or indicate what comes next in an activity.

• Embed critical skills within activities to assess the child’s level of understanding and response. Does the child initiate activity? What level of support or prompts are needed? What is the child’s response if the routine is changed or sabotaged? What kind of choice-making is shown?

• Create a report in which team members contribute to one comprehensive final document based on areas assessed. The report should include ideas for planning and educational programming.
#4: ESSENTIAL ASSESSMENT DOMAINS

Social/Communication: (Vocalizations, gestures, eye gaze, changes in movement, alertness, verbalizations, signing.) What methods does the child use for receptive and/or expressive communication? How does the child use these? How does the child respond to the assessment facilitator, parent, peer? i.e. cues, verbal requests, pauses for turn-taking.

Sensory/Motor: What are the child’s likes/dislikes? tolerance for different types of sensory input? willingness to explore new, unfamiliar sensory input? How does muscle tone affect the child’s ability to participate in activities? (Motor planning? Stamina? Reach and grasp?) What supports and physical modifications are used and what are the results of each? What positioning works best for stabilization, comfort and greatest range of motion?

Functional Vision: Does the child appear to have useful remaining vision? What focusing and tracking patterns are present? How does the child use near vision? distance vision? What is observed about the visual field—use of central or peripheral viewing? Do visual fields appear to be intact? Does the child look at an object while interacting with it or look away, and then act? Does the child show color preferences? preference for movement rather than still objects? Are eyeglasses or low vision aids recommended? tolerated? in use? What is the child’s preferred learning mode: visual, auditory, or tactual?



Functional Hearing: Is the child aware of sound? Does s/he alert to sound, orient to sound, localize sound, isolate a specific sound in the presence of other sounds? Does the child respond to a selected sound among other sounds? Does the child appear to use hearing to respond during the assessment—to voice? music? speech? Are hearing aids recommended? tolerated? in use?
All of these areas need to be assessed because they are interrelated in their influence on the child’s ability to make sense of the world. Accurate functional data on vision and hearing is particularly critical since it is the combined effect of the dual sensory impairment that requires instructional approaches differing from either vision or hearing strategies. Only when the child is assessed in settings where s/he is familiar with the facilitators, routines, and materials will s/he have the opportunity to respond in a way that gives a true indication of developmental/cognitive level. The child will demonstrate competencies and areas where skills are emerging or as yet undeveloped. The more accurate the assessment of the child, the more effective will be the next steps toward greater meaning and participation at home, school and in the community.

Miles, B. (2000) Overview of Deaf-Blindness, DBLink, Revised July 2000.


This article was prepared as a partial requirement of the New England Center Deafblind Project/Summer Institute 2001. The information compiled here represents an outline of the information presented by Dr. Jennifer Grisham-Brown (University of Kentucky), Patty Mason (South Shore Educational Collaborative), Debbie Gleason (Perkins School for the Blind), Vicki Wilson (Perkins), and Darick Wright (Perkins).


Planning Your Child’s Individualized Education Program (IEP): Some Suggestions to Consider

Reprinted with permission from Families and Advocates Partnership for Education (FAPE) Coordinating Office:

PACER Center, Inc., September 2001
Before the IEP team meeting:

• Consider the vision you have for your child for the future as well as for the next school year.

• List your child’s strengths, needs, and interests and your major concerns about his or her education.

• Consider how your child’s disability affects his or her education.

• Think about your child’s educational progress. What has been working and what has not?

• Request a written copy of your child’s evaluation results or a meeting with school staff to discuss the evaluation before the IEP meeting. This gives you an opportunity to understand the evaluation before the IEP team meeting for your child.

• Consider the evaluation results. Do these results fit with what you know about your child? Is the evaluation complete and accurate? If you disagree with the school’s evaluation, you may request, in writing, an independent educational evaluation (IEE) at no cost to you. The school must pay for the evaluation or show the due process hearing officer that its evaluation is appropriate. The results of an IEE must be considered by the IEP team in planning your child’s IEP.

• Consider a variety of ways to involve your child in developing his or her IEP, starting at a young age if appropriate. Self-advocacy skills are important to develop.

• If needed, plan to bring someone with you to the meeting with knowledge or special expertise regarding the child, such as a spouse, relative, friend, related service personnel, or representative from a local disability organization.


At the IEP team meeting:

The IEP meeting is very important. You, the school personnel, and other IEP team members attending the meeting will review and discuss information about your child to develop the IEP. It provides an excellent opportunity to ask questions and share important insights about your child, whom you know better than anyone else does. The school needs to know what your child is like at home and in the community, as well as what your child’s interests and activities are.

• Make sure others at the IEP meeting never forget that the meeting is about a real child - your child.

• Share your visions for your child, both short-term and long term.

• Discuss your child’s strengths and needs and any concerns about your child’s education.

• Remember that diagnostic tests and assessments do not present the total picture.

• When you believe that the teacher and school personnel are doing a good job, tell them so. Praise, when deserved, is a great thing.

• Be a good listener. Ask questions.

• Make sure you understand. If you don’t understand something, ask to have it explained in a way that you can understand.

• Expect that what you know about your child will be used in making decisions.

• Use school data, your child’s progress reports, and other information you know about your child to make decisions.

• You may not want to agree to a proposed IEP at the end of the meeting. Review the proposed IEP document at home. If you disagree with what is being proposed in the IEP document, you must notify the school as soon as possible to resolve the disagreement.


After the IEP team meeting:

• Your child’s IEP must be reviewed at least once a year to determine whether the annual goals have been achieved and to revise the IEP if necessary.

• Your child’s school must inform you regularly about your child’s progress, at least as often as parents who have children without disabilities are informed about the progress their children are making. Schools can do this by providing periodic report cards. You will be informed about whether your child is making progress toward meeting the annual IEP goals, and whether the progress is enough to reach the goals. If your child is not making adequate progress, an IEP meeting should be held to review the IEP and make needed changes.

• You may request an IEP meeting at any time during the year if you believe it is important to consider changes in your child’s IEP.

The information above is a product of the PACER Center, Inc., the coordinating office for Families and Advocates Partnership for Education (FAPE)

8161 Normandale Blvd., Minneapolis, MN 55437

952-838-9000 voice – 952-838-1090 TTY

1-888-248-0822 toll-free

Website:

Notice: New Special Education Documents From TEA

By Jenny Lace, Education Specialist,

Texas Deafblind Outreach
The Texas Education Agency has released two new special education documents which can be found on the TEA website at .
A Guide to the Admission, Review, and Dismissal Process

This document contains information a parent needs to effectively participate in the ARD committee meeting for their child. This guide was produced with the expert guidance of a stakeholder group of parents, educators, other professional service providers, advocates, and information compiled from statewide public meetings. The table of contents includes:

• Timelines in the Child-Centered Educational Process

• Special Education Introduction

• Terms and Definitions

• Special Education Process (referral, evaluation, eligibility, individualized education program, annual review)

• Parent Rights and Responsibilities in the Process

• Additional Issues Related to the ARD Process (behavior intervention plans, discipline, early childhood intervention, extended school year services, graduation, state assessment, transition)

• Eligibility Categories for Special Education

• Texas Special Education Resources

All parents of students with disabilities currently receiving special education services should receive a copy of the guide from their school district by February 28, 2003. This guide will be updated as changes to federal regulations, state law and/or Commissioner’s rules occur. The hard copy version of the document will always denote a print date. The most current version of the guide will reside on the TEA website at:



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