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Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Chris Montgomery, TSBVI Outreach deafblind educational consultant and summer enrichment instructor, & Holly Cooper, TSBVI Outreach deafblind educational consultant

Abstract: The authors describe a two-week-long summer school session consisting entirely of students with deafblindness. Specially designed instructional opportunities included grocery shopping, going to restaurants, visiting an ice cream making store, and visiting a zoo. These activities were used as opportunities for concept development; learning appropriate vocabulary and symbols; practicing orientation and mobility skills; making lists and creating experience books; and choice making. Opportunities for staff development and parent training were also included. Keywords: deafblind, summer program, expanded core curriculum, communication

In this age of inclusion of students with the environment and people. In some casdisabilities in the least restrictive environ-es this process is facilitated by an interment, is there a need for a special class for vener, in some cases a paraprofessional, students with deafblindness? The unique and in some cases the teacher. All too of-needs of such students lead us to believe ten, individuals with deafblindness do not the answer is yes. The key to quality pro-have access to appropriate intervention, so gramming for individuals with combined we at the Texas Deafblind Project and TS-hearing and vision impairments is the con-BVI Special Programs collaborated to decept of intervention. Intervention is the velop a special summer school program for process which allows an individual who is some select students with deafblindness deafblind to receive non-distorted informa-to provide a time of high quality programtion such that he or she can interact with ming. We also worked to develop a model program in which parents and educational team members could observe and learn.

This is the second year Chris Montgomery has organized and taught this special summer session for students with deaf-blindness. We believe this program has improved every year and provided many opportunities for learning that students would not have otherwise had. This program was developed with the philosophy that all students with deafblindness benefit greatly from experiential learning situations, situations that involve activities in which the student can learn by doing. Many off-campus trips were included in the instructional day to make use of the community as a tool for discovery and experiential learning. These experiences were then used as a way to increase topics for literacy skills, build concept development, and provide opportunities for conversation. The aim was to provide, and further refine, good communication system models (including calendars, routines, and conversational strategies) that might give family members and teachers of deafblind students some tips and new ideas to implement at home.

Each school day began in the dormitory with students participating in cooking their breakfasts. Students then walked a sometimes challenging route to their classroom, following temporary construction fences and avoiding obstacles that sometimes varied from day to day. In the classroom students previewed their schedule for the day using objects, drawings, printed words or tactile symbols. School-based activities included cooking, art, and physical education.

Classroom work infused literacy into the expanded core curriculum, particularly activities of daily living. Students in this small class had a wide range of abilities from a student with functional mastery of reading and use of the internet to a student whose primary goal was to improve his emerging communication and social skills. Students discussed foods they wanted to prepare, searched the internet for recipes, developed a shopping list, planned a budget, and went shopping to purchase the items. Activities were used to facilitate the development of concepts and tie concepts to spoken, signed and written vocabulary. Planning included the creation of lists using print and object symbols. Follow up instruction involved staff and students creating experience books in which they described the activity and their role in it. Books were made with print and pictures as well as with braille, tactile symbols and objects and artifacts gathered during events.

In addition to literacy, the class provided learning opportunities in a variety of other areas. Students learned time concepts through use of calendars, schedules and object shelves to discuss upcoming and previous activities. They had opportunities for choice making and self determination in choosing the foods for their own breakfast, as well as food projects to prepare in the classroom. They learned and practiced appropriate social skills on campus with familiar people, and off campus with strangers and in unfamiliar situations. Students with deafblindness who have limited ability to communicate often experience anxiety when they go with their families or classmates into public settings, and having support from familiar people who can judge when they may be reaching their limit of ability to tolerate noise and confusion can be an effective way for such students to learn to understand situations and gain skills.

Learning opportunities in the classroom and the community also provided experience and practice in a wide variety of additional skills. Learning to organize work space and materials, and cleaning up and putting away materials are important skills for all individuals; but they are especially important for children with visual impairments as they may not be able to observe others practicing these skills, and may spend considerable time searching for needed supplies. Students also had experience following instructions, whether spoken, printed, or presented with pictures, depending on their ability. They also had experience giving directions to others, requesting and providing assistance, and working together as a team. The summer program was also used as a parent and staff training opportunity. A wiki (see photo) was created that was accessed with a password to protect student confidentiality. Photos and links to videos were posted daily, along with some discussion of learning activities which occurred and how students responded to them. One intervener of students with deafblindness who works with one of the summer program students in her home district, also came to work with her during the session at TSBVI. She had many opportunities to observe others working with the student, as well as participate in planning and implementing activities. Parents of the students as well as educational team members of one student came to a training the last two days of the program, observing in the classroom and attending workshop sessions on communication, self-determination, infusing Texas Essential Knowledge and Skills (TEKS) into functional activities, and making learning activities more motivating.

 

The staff members who supported this class, as well as other members of the Texas Deafblind Project, hope to offer a similar program in the future. We believe it is an effective method of enriching the educational experience of students with deaf-blindness, as well as an ideal learning lab for professionals and family members.

Chris Montgomery summed it up:

I think everyone felt that this (experience) gave a lot of depth to understanding how to work with the kids. With endeavors like these it’s usually the things you don’t plan for that turn out to be the best experiences— the things we take away and remember. I was amazed at the connections that were made during this short two week program. Two of our students became very close friends and worked amazingly well together to solve problems and support each other in the new and sometimes emotional experiences they shared. The staff to student bond was really remarkable too; the kids were able to trust their teachers to help them through the new and sometimes emotional experiences they encountered while away from home. Parents connected as well, trading phone numbers and sharing experiences during the BBQ picnic. In all it felt as if some lifelong friends and connections were made.

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Jim Durkel, Outreach Teacher, Coordinator of VI Registration and Deafblind Census, Texas School for the Blind and Visually Impaired

Abstract: the author discusses the VI registration and the deafblind census and answers frequently asked questions.

Keywords: visually impaired, deafblind, census, Texas, demographics

Every year Texas School for the Blind and Visually Impaired conducts two counts of students for the Texas Education Agency. The largest of these counts is the Annual Registration of Students with Visual Impairments, or as it is known across the state, the VI Registration. The second count is the Deafblind Census. These counts are important for a variety of reasons.

The VI Registration results in reports that help with the distribution of textbooks in large print, Braille, or audio. The VI Reg also is the basis for a report that goes to the American Printing House for the Blind (APH). This report generates Texas about $1.5 million dollars annually in funds that can be used to purchase special materials created by APH to support the education of students with visual impairments.

The Deafblind Census serves as the basis of a report that impacts the amount of Federal money Texas qualifies for to run the Texas Deafblind Project. That technical assistance team receives about $.5 million each year to provide school consultation, local, regional, and statewide training for families and professionals, and production of this quarterly publication, TX SenseAbilities.

Both the VI Registration and the Deaf-blind Census are used by a variety of state and national agencies to look at trends and to assist in planning on how best to meet the needs of Texas students with visual impairments, including those with deafblindness.

To help prepare for these up-coming counts, we would like to answer some frequently asked questions.

Why are there 2 counts and how are they different?

There are 2 counts because they are looking at slightly different types of students. Some students may be on one count but not the other.

The VI Registration is the largest with over 8,000 students. It is a count of all students who have a visual impairment or deafblindness as a handicapping condition. It is a count of all students, birth through 21 years of age, who receive services through an IFSP or IEP from a teacher of students with visual impairments.

The Deafblind Census is smaller with just over 700 students. It is a count of students who meet a Federal definition of deafblindness and who may or may not have an IEP that lists visual impairment and auditory impairment or deafblindness as a handicapping condition. Most, but not all, students on the Deafblind Census are also counted on the VI Registration. However, there are some students who may be eligible for inclusion on the Census but not be included on the VI Registration. For example, a student with Usher Syndrome who is not yet showing much if any field loss should be on the Deafblind Census, but might not be carried on the VI Registration.

The VI Registration asks several specific questions about reading media and visual ability. The Deafblind Census asks specific questions about classroom setting in addition to information about auditory and visual abilities.

The VI Registration is mandated to be a “snapshot” of students as of the first Monday in January. The Deafblind Census is mandated to be a “snapshot” of students on December 1.

Is it important to put eligible students on both counts?

Yes, it is important to put eligible students on both counts. The information collected is different and the reports go to different agencies.

Should babies, served together by the local school district and eci, be counted?

Yes, if a baby is receiving services from a teacher of students with visual impairments and/or a teacher of students with auditory impairments and meets the criteria for inclusion on the either or both the VI Registration and Deafblind Census, they must be included on the count. Ideally the baby would have a PEIMS number and be registered with the local school district, but this is not necessary for reporting the student on either of these counts.

What is parent consent and Why is it important?

Parent consent is needed for TSBVI to share information with various agencies. If we can’t share the information, this can lead to a decrease in the amount of funding the State of Texas receives from Federal agencies. Without consent, information used for planning can’t be shared, which may mean that your child’s particular needs don’t get recognized and addressed.

The parent consent form can be found at .

Why do expired eye reports matter?

Every 3 years, the IEP team meets to look at assessment data and decide what new assessment data is needed to support eligibility and programming. One of the pieces of information is the eye medical report from an ophthalmologist or optometrist. If an eye medical report is older than 3 years, it is considered expired unless during the Review of Existing Evaluation Data (REED) an eye medical report older than 3 years is accepted as current. This process of accepting a past evaluation as current may be referred to as “bringing forward”.

Legally blind students with expired eye reports do not generate Federal funds for adapted materials from the American Printing House. To be considered current, an eye report must be no more than 3 years old or have been brought forward.

It is important to remember that vision loss is caused by a medical condition. Medical evaluations are an important part of the evaluation process for a student with visual impairments or deafblindness and should not be treated lightly.

When should use of assistive technology (at) be reported?

Use of assistive technology is reported on both the VI Registration and the Deafblind Census. These are the definitions of assistive technology and assistive technology services from IDEA 2004:

  • Section 300.5 “The term ‘assistive technology device’ means any item, piece of equipment, or product system, whether acquired commercially off the shelf, modified, or customized, that is used to increase, maintain, or improve functional capabilities of a child with a disability.”
  • Sec. 300.6 “Assistive technology service means any service that directly assists a child with a disability in the selection, acquisition, or use of an assistive technology device.”

Under these definitions, AT could include, but is not limited to: any materials in Braille or large print; recorded or electronic books; the use of special paper to eliminate glare and improve contrast; bold line paper; tactile graphics; a Little Room; a light box; adapted toys such as the APH Tangle Toy; experience books; adapted switches; a white cane; adapted mobility aids; CCTV; any magnifier or telescope; or screen reader. It is easy to see how almost every student with a visual impairment or deafblindness would be using something that counted as assistive technology.

We look forward to counting all of your children, and appreciate your help in completing these efforts every year. If you have any questions or concerns about either the Annual Registration of Students with Visual Impairments or the Deafblind Census, feel free to contact Jim Durkel at the Texas School for the Blind and Visually Impaired, .

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Ruth Ann Marsh, COMS, TSBVI Outreach Orientation and Mobility Consultant

Abstract: The author discusses the importance of not protecting students too much so they may have opportunities to learn to solve problems and gain independent skills.

Keywords: visually impaired, orientation and mobility, problem solving, independence

As teachers of the visually impaired (TVI) and orientation and mobility specialists (COMS), our roles are to help out students develop the skills that will enable them to be successful, not only in school but in the world outside of and beyond school. Part of the goals we have for our students is to teach the expanded core curriculum such as Braille, use of visual aides, adaptive technology, cane skills, use of public transportation, daily living skills, etc. While all of the skills are needed for success both in school and out of school, the skill that will help them the most is the ability to recognize and solve the inevitable problems that are encountered through one's life.

Most professionals in the field of visual impairment are there because they want to help their students. But what we learn early on is that helping a student sometimes means letting them learn to deal with problems without our interference and interventions to "fix things". It's not an easy thing to do - to stand back and let your students learn from their own mistakes. I, personally have had to literally bite my lip to keep from blurting out information that my student would, given ample time, figure out on her own; keep my hands clasped behind my back to keep from reaching out to physically rearrange something so that it was less of an obstacle; remind myself to wait and give her time to discover her options and then act upon them; etc. I often have invited parents to accompany us on O&M lessons, reminding them to also not interfere, so that they can see how their children are able to handle naturally occurring challenges. Often parents are amazed at what their children can do when given the opportunity.

Of course, making sure that your students are safe is always paramount, but making sure they succeed by falsely removing all or even some of the challenges actually keeps them from developing the problem-solving skills needed to become independently successful. And it ultimately has a negative effect on the self-confidence as they quickly learn that they only "succeed" when an instructor is present. They are not fooled for long.

In his best seller self-help book, The Road Less Traveled, Dr. Scott Peck begins his first chapter with the sentence, "Life is difficult." He goes on to say,

"What makes life difficult is that the process of confronting and solving problems is a painful one. Problems, depending on their nature, evoke in us frustration or grief or sadness or loneliness or guilt or regret or anger or fear or anxiety or anguish or despair... Yet it is in this whole process of meeting and solving problems that life has its meaning... It is only because of problems that we grow mentally and spiritually. ...when we avoid the legitimate suffering that results from dealing with problems, we also avoid the growth that problems demand from us."

None of us want our students to suffer. But dealing with frustrations, and learning that one can work through them and be a better, more capable person is a life affirming, powerful experience. Our students learn not only that they can get around physical obstacles on campus, but that through determination and persistence they can deal with similar obstacles in other environments. Our students learn how and when to be an advocate for their needs, but also how to be creative when problems need to be solved. They learn how to manage frustration and to channel that energy in constructive ways. If students were guided everywhere on campus, they would not have had the opportunity to learn and practice these problem solving skills.

Our O&M specialists, while always ensuring students' safety, have to stand back and give them the time and encouragement to work through some puzzling, frustrating experiences. But the result is young people who are developing the confidence they need to be successful when they don't have an O&M specialist along. In her article, "Frustration While Traveling", Amanda states, "I will deal with the same things for the rest of my life. I am happy that I can deal with things." A famous quote by Hodding Carter, Jr. comes to mind: "There are two lasting bequests we can give our children. One is roots. The other is wings." May we always have the courage, fortitude and patience to give our students roots and wings. 

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Amanda Huston, Student, Nevada, TX

Abstract: A student shares an essay she wrote about her solutions to challenges she encounters while traveling.

Keywords: Family Wisdom, deafblind, ataxia, orientation and mobility, accessibility, self-determination, personal experience

Did you ever get frustrated before? I had buildings and they all frustrate me. I have a lot of frustrations while traveling. I am solutions to deal with problems. I am very deafblind and have ataxia. Ataxia is a disorfrustrated about the buildings. der that makes my muscles weak. Because of my ataxia I have braces to help me walk. The back door of Dorm K was frustrat-I use a walker to travel and sometimes ing me because I could not open it. The even need to use a wheelchair. The doors, back door had a little step and it was hard construction, and elevators are part of the for me to open because there was no way for me to stand next to it with my walker or wheelchair to pull the door open. I was frustrated about it. I just sat and waited for someone to open the heavy doors for me. Melissa had to help because it was very hard for me. I was late to class because I could not open it, and I didn’t want to ask for help. I decided to e-mail Mr. Fain, TSBVI Principal, about it. Brenda Gregory (PT/OT Coordinator), Mr. Fain and John Daude (Director of Operations) all worked together to figure out what is easier for me. They made a little ramp and added a sidewalk on the west side of the door so it is easier for me to open the door independently.

The construction frustrates me too. I feel upset because they had to put a big fence around the middle of campus and it is very hard for people to walk around to get to class. I hate to walk far to my class because my balance is not good and my muscles get very tired easily. I decided to leave my class early so I would not be late.

I am excited about the new buildings but I did not like it when they tore down the buildings because I am very scared of the noise.

Sometimes the elevators are broken and it makes me frustrated and upset. It is very hard for me because I cannot walk up the stairs to my classroom on the third floor. When the elevators break I have to have class in different place, but I do not like that. One time I refused to listen and would not go to math class. I got in trouble and had to go to detention. I asked someone to e-mail the elevator worker and asked them to please fix the elevator.

I hate heavy doors, broken elevators, and construction because it is very hard for me to open heavy doors, walk up the stairs and get to my classes. I have good ways and bad ways to deal with problems. I will deal with the same things for the rest of my life. I am happy that I can deal with things.

Writing the essay

By Kay Pruett, Teacher of the Visually Impaired, TSBVI

Last spring, as construction began on campus at the Texas School for the Blind and Visualy Impaired, Amanda’s Language Arts class was continuing a study of the writing process. For her compare-and-contrast essay, Amanda chose to compare different solutions to the challenges she faces trying to independently negotiate architectural barriers. As part of the process, she read how other authors addressed different problems and possible solutions in their stories. She learned to identify the specific passages and language that described the problems and solutions in the stories and to clearly write about her own problems and solutions. In her essay, she presents an ineffective and an effective solution for each challenge she describes.

To follow the writing process, Amanda began with a list of ideas. In class, we discussed the list and created a five-paragraph structure that would support writing about the ideas she had selected. She wrote her first draft within this organizational structure. In the revising stage, Amanda improved the organization and sequencing of sentences within each paragraph by rearranging strips of paper with one sentence written on each strip. She used a CCTV for this task. Then with her strips taped together in the new order, she learned to “cut and paste” on the computer to revise her document to match the paper document. Finally she edited for spelling, grammar and clarity.

Throughout the process, Amanda approached the challenges of the writing task with the same persistence she writes about in dealing with architectural challenges. What a great life skill!

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Irasema Ramirez, Member of TAPVI, Laredo, TX

Abstract: A mother describes her experience attending an international family conference for families of children with visual impairments, including those with deafblindness and additional disabilities.

Keywords: visual impairment, deafblind, TAPVI, NAPVI

Editor’s Note: Five Texas families were able to attend the International Families Connecting Families Conference organized by the National Association for Parents of Children with Visual Impairments (NAPVI). The major sponsors were the American Foundation for the Blind and the Junior Blind. A TAPVI member wrote the article below. Texas Association for Parents of Children with Visual Impairments is an affiliate of NAPVI. More information can be found at and 1-800-562-6265.

I think it was a wonderful experience for hamas, told us the way they help VI stumy daughter and me to attend the NAPVI dents with their educational program. They TAPVI International have support for students like TSBVI. From Family Con-the Philippines Association of Parents of

ference in Costa Mesa California, this summer. We had the opportunity to meet with parents of children with visual impairments and hear from different sources of support for our kids.

My daughter Irasema is 18-years-old with Retinitis of Prematurity (ROP). She was a very premature baby of 24 weeks. She lost her right eye

Children with Visual Impairments (PAPVI) we met Belinda Polintan and her son. They were very happy to get together with families in the United States. We shared information about the support we have in the US. Sitara and Madhu Rangnathan, from India, now living in San Francisco, California, told us that they are working as a team with their school. Aracely Rivera, from Downey, CA, asked me about the programs in Texas because they are planning to move to our state. I introduced Aracely to the people from Texas and gave her some informa

and has very poor vision on her left eye. She graduated from high school in Laredo, Texas and plans to attend community college.

This was truly an international conference as we met many families from other countries. Desmond Brown and Barsha Smith, from the Ba-tion and resources that I use to help my daughter. They are from Mexico City, but now they are living in the US.

Another important thing that we learned is that Mr. Barry Stickings and his son, Toby, from the United Kingdom (UK) are members of an organization called MACS (Micro and Anophthahlmic Children’s Society) . This group helps students in their country with technology, financial aid, and most important, emotional support in order to be successful at school. They also have an annual conference and they told us to e-mail them if we are interested in attending.

Dr. Bill Takeshita, Director of Optometric Services at the Center for the Partially Sighted, was the keynote speaker and shared with us very important things. Dr. Takeshita lost his vision when he was 6 years old, and since that age he has worked hard to be successful in his life. Now he is an admirable model for our kids, because he is a doctor and a professor. He suggested that if your child has vision problems, you must encourage them to learn Braille. In my experience if a child can see a little then, the school does not want to teach them Braille. It is very important, like Dr. Takeshita said, “GAMBÁTE.” In his language that word means, “Try your best”. You can get more information on the center at: . You can also learn more about the Dr. Bill Foundation and listen to him by going to: .

There were a lot of sessions and we attended as many as we could. It is very important that you participate in these conferences to learn more about helping your kids.

Sunday afternoon, Farhana Khawar and her daughter from Austin, TX, my daughter Irasema, and I went to Disneyland. We enjoyed a wonderful evening with our daughters in the park. She shared her rental car and I shared our tickets to the park. They are a nice family.

Irasema and I were very lucky to attend this conference and we hope we can participate in the next one. My husband, Miguel, my daughter “Irita” and myself are here to help anyone that has a visually impaired or blind child. We will share our experiences and all we have learned during these 18 years. We are a team at NAPVI and TAPVI and are here to support each other.

Thank you to TSBVI Outreach for supporting us with the expenses to travel to California and the opportunity to share our experiences with all TAPVI members.

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Kim Cunningham, Pearland, TX

Reprinted with permission from Future Reflections, Vol. 28, Number 2, Summer, 2009

Abstract: A mother looks back at the influences that helped her raise a daughter born with a visual impairment to become an independent, typical teen.

Keywords: visual impairment, blind, parenting, transition, expectations, growing up

From the Editor: Kim Cunningham is president of the Texas Parents of Blind Children. A few months ago she posted a note to the NFB Blindkid Listserv, describing an incident that had inspired her when her daughter Kayleigh was four years old. She expanded her post into an article for Future Reflections, and here it is.

I’m sure that every parent remembers the day their child was diagnosed as blind or low vision. For me, it was a life-changing moment. My mind was consumed with one thing -- fear! It was the fear of what I thought it meant to be blind. I had never known or even met a blind person. How in the world was a regular stay-at-home mom like me supposed to have the abilities to raise a blind child? What would this mean for my precious daughter and for the life of our family? Would my daughter be happy? I had fought so hard to save her! Now I knew I would have to fight equally hard to insure that she had a good life. And so our journey began ...

My daughter, Kayleigh, was born severely premature. I never knew if each day would be my last chance to see her. Every trip to the hospital was agonizing, knowing another major complication was right around the corner.

After fifteen surgeries and a four-and-ahalf-month stay in the NICU, we brought home a healthy four-and-a-half-pound baby. We were told that she had a severe vision loss; however she should be able to see “some.” Some … What the heck did that mean? She could see but she couldn’t see? Boy, was I confused!

In the following weeks, we were shuttled between doctors, therapists, and teachers. Our new life began as we tried to learn how to parent a partially blind child. Our first teacher of the visually impaired kept using the B words -- blind and Braille. I couldn’t even say those words. My fear was all encompassing. I remember one day crying and asking my mother, “What happens if my little girl grows up and is angry because she is blind?” In that moment I realized that I would not give her the opportunity to think or say those words. I knew I must let go of my fear and learn all I could about blindness. I began reading books, attending parent support groups, and asking questions of all the professionals who were now in our lives.

During this time, I kept hearing words like “disabled,” “handicapped,” and “special.” These words strongly connoted not being able to do this or that. The words made me sad. These labels just didn’t seem to fit my little girl, who was making progress in every area of development. Don’t get me wrong. She was months behind according to her birth age, but during each review of her development, she was climbing the ladder of success. We were on our way -- to where, I had no idea, but nevertheless we were heading in a positive direction.

When my daughter was four years old, we decided to take the family to Disney World in Orlando, Florida. I hoped the trip would take us away from all the therapies and doctor’s appointments, and give us some time to be an ordinary family. Kayleigh had had a cane since she was two, and I knew that she would have a blast exploring the park with her newfound independence.

Disney World is a magical place for children, but this trip made it a magical place for me also. While we stood in line, waiting our turn to get on yet another ride, I saw a group of teenage girls laughing and giggling like most teens do. They were headed to one of those giant roller coaster rides, I’m sure fully anticipating that this one would be even better than the last. Then I noticed something very familiar. One of the girls was holding a cane! They were typical teenagers doing typical teenage things, and one of them was blind. No one was holding her hand. No adult was supervising her every move. No stigma kept her from having friends. There was nothing “special” about her except that she was using a cane.

 

 

That young lady will never know the impact she had on my life. She showed me what I wanted for my daughter. Now I had a sense of direction and a picture of what my goal would look like. I would raise my daughter to have the same opportunities her friends had. I would no longer listen to the naysayers who painted a picture of gloom. Now I knew that Kayleigh truly was able to have a typical life. I could have the same expectations I would have if she were sighted.

Over the next thirteen years we struggled to educate everyone in my daughter’s life about blindness. Most people only thought of their own fears, as I once had myself. There had never been an academic blind child in our school district before, and no one expected Kayleigh to be an accomplished student. Every step of the way I refused to allow her blindness to excuse her from doing her best.

Kayleigh is now a junior in high school and a member of her high school choir. This year the school planned a trip to Disney World. Since I have chaperoned many school events, I assumed that I would have the opportunity to go along on the Dis

ney World trip. Then, a few months before the trip, my daughter informed me that she preferred me not to chaperone this year. She wanted to go by herself. She felt confident in her abilities and wanted to hang with her friends without Mom around. WOW! This was the very picture that I had in my mind when

I saw the vibrant blind teenager thirteen years ago. I did it -- I really did it!

Kayleigh returned from her four-day trip full of stories. She told me how she rode the fastest rides, watched shows, had her picture taken with the Disney characters, and shopped in all the stores. As she talked about her trip, my mind kept going back to the blind teenager I saw years before. I thanked that unknown girl who made such an impact on my life. I pray that our children are able to change the lives of other families that are on the same journey. Who knows . . . maybe another family saw my daughter at Disney World, and maybe, just maybe, she made an impact on their lives.

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Dorothy C. Lewis, Conroe, TX

Abstract: A proud grandmother describes her grandson’s adjustment to sudden blindness. He is very involved with family life, friends, and his community.

Keywords: blind, grandparenting, disability, brain tumor, growth hormone, sports

Case is my 5-year-old grandson who has been blind since he was 2 1/2 years old. Tragedy struck in the form of a baseball-size brain tumor shortly after Thanksgiving 2006. On November 26, he had emergency surgery to release the fluid around his brain. Then on December 1, a 16-hour operation was performed at Texas Children’s Hospital. The craniopharyngioma (a brain tumor that grows in the area of the pituitary gland and the optic nerves) was removed piece by piece as was the pituitary gland, which had grown over the top of the tumor. Because the tumor was so large, it stretched the optic nerves to his eyes, and he was blind. After three surgeries to release fluid that was leaking from the bur hole, a fourth operation was necessary to insert a shunt to drain the fluid into the stomach area. The good news was he did not have cancer. The bad news was he would have to take 8 pills and a human growth hormone every day for life, and it could grow back.

So far we have been very fortunate. He has two MRIs yearly and blood tests every three months. The pills and shots are extremely expensive. His mother is a single mother who is a flight attendant. She is his rock and support. Case sees an endocrinologist, hematologist, neuro-pediatric ophthalmologist, brain surgeon, and a pediatrician, as well as numerous technicians. This is the background on my amazing grandson.

For the first year after his surgery, he would ask, “Why is it so dark, Mom?” Now he will say, “Did you see that, Mom?” He doesn’t seem to realize he is blind. Case attends a small school in Weimar, Texas. The principal and teachers love him, as do the students. I cannot say enough about his school or any of the personnel, including the janitor, counselors, kitchen staff, and secretary of the school. In their own way, they each have helped this little boy.

Case has participated in Track and Field Day with his class and earned a first place ribbon in the races. On relay day, everyone was chanting his name. When they were asked for silence so Case could hear the bells, no one uttered a sound in the gym.

Case ’s teacher invited Case to partici pate in T-ball for Weimar. He was a member of the Angels. He would feel the ball on the T and then hit it. No one hit it for him. To run the bases, he listened for the beeper ball to guide him from base to base. He did not like to make an out, but loved to score a run.

Case does other things as well. He loves his dogs, Cowboy and Jack, and his cat, Hondo. Most dogs sense this little boy is special and protect him. He has a big brother, Tim. They wrestle and play. His cousins will play with him as well. Case loves to ride his 4-wheeler. His mother calls out commands to him, and he responds to her directions.

Case has also ridden the mechanical bull at the Houston and Columbus rodeos. Of course his dad or mother is usually beside him in case he falls. He wants to do mouton busting at the Colorado County rodeo. He loves to go to the ranch to fish and ride the tractor with Papaw, Uncle Donald, Uncle B.W., or whoever will oblige him. He also works puzzles, is learning Braille, helps me in the kitchen, likes to build things with his blocks, and repair things with his tools.

Recently we went to Cabo San Lucas. Case loves the people at the resort and the people there also love him. He never meets a stranger. Personality plus is my grandson. He charms everyone he meets. Make a Wish Foundation sent him and his family to a Kenny Chesney concert. Chesney autographed his cowboy hat.

He loves to wear his jeans, cowboy boots and shirt, and his hat. He will help brush Tim’s show heifers. He also likes to ride horses and is learning to swim this summer.

Case is a strong believer in Christ. His prayers will bring tears to your eyes. He prays for all the sick children, the soldiers overseas in Iraq and Afghanistan, each one of his relatives who are sick or dying and even the devil. He can recite the Lord’s Prayer by memory. He has a little friend who has leukemia and was in Texas Children’s Hospital, and he prays for her daily. She passed away recently and Case went to her funeral.

As a mother and grandmother I want to acknowledge this little boy for his accomplishments. Last weekend I was at a conference for parents with children who have disabilities. I realize how fortunate we are with Case, but he has done so much on his own by being very, very brave and having a strong support group. For any disabled child, this is a must. He has a loving and caring big brother, and a very strong and beautiful mother who just happens to be my daughter.

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Crystal Morales, Austin,TX

Abstract: A young adult with deafblindness shares her journey, shared with her twin sister, growing up with high expectations and encouragement from their mother.

Keywords: Family Wisdom, deafblindness, self-determination, musician

When our Mom, Cynthia, was told her little girls would never make it, she said a prayer: “I will be the best Mother I can. Please let my little girls survive.” As a young adult mother to two disabled children she had no idea what was to come. My twin sister Danielle and I were born three months early to meet the world barely even surviving. From having heart surgery at four hours old to having lung disease and multiple other conditions, it was quite stressful, scary, and dramatic.

After many years of medical appointments, physical therapy, medications, speech therapy and special education, we graduated high school at the age of twenty as two eager, motivated, and confident deafblind young adults. While in high school we received great help from deafblind specialists, Braille instructors, and Orientation and Mobility teachers, as well as obtaining assistance from the Texas Commission for the Blind. We knew it would be hard to go to college with disabilities, but knew it was something we wanted, following behind our Mother’s footsteps. She stressed how important it was to be educated, find ways to do something no matter how hard, and to never give up.

From age six we loved composing music, writing songs everyday together. As we grew up, so did our music abilities, and we begun performing for small audiences until we put together a concert professionally. We have performed for colleges and universities; on radio stations and a local news station’s live music section; at private events; and even in coffee shops and local music stores. Although we enjoyed this so much, hearing difficulties started making it hard to hear and enjoy our compositions.

Both Danielle and I were born with congenital Nystagmus, Strabismus, Ambliopia and several other conditions of the eyes along with hearing impairment. Mom was told by doctors that we would both be totally deaf and blind by the age of twenty-one, and probably not survive until that age. Mom would stay up at night just crying herself to sleep. Doctors were telling her of horrible conditions and diseases that could eventually kill us.

She found the strength to help us find ways to go to school, even home-schooling for a short time. Danielle and I were also having some trouble with mild seizures that would interrupt our day up to 20 times, leaving us tired and distracted. Those became worse as we got older too; but with all of these things going on, we would remember that one phrase Mom would say, “All things possible girls.”

We would eventually compose two CDs of original compositions. We just had to make our first CD with the title “All Things Possible” and our second CD “Meditations”. Mom was scared we would lose all of our hearing within the next few years, and wanted to capture our music before it did. Although we did lose a lot of hearing, we never let it stop us. Currently we both have profound hearing loss along with severe vision impairments and epilepsy that do make things hard, but not always impossible.

Today we still compose music in our modified music studio that is accessible. All of our speakers, amplifiers, and Eq machines make it possible for us to hear our music, even though we don’t hear in all the ranges. All of our keyboards, synthesizers, and recording devices are marked in Braille and have hand-brailled manuals and menu pages. Our acoustic instruments, such as the violin, cello, bass, and hammered dulcimer, are individually tuned and mic’d so that we can hear them. We can even connect our FM system to the amp, so that it sends the signal to our hearing aids wirelessly. Even though we had to figure these things on our own, it sure does make us feel good knowing that we can be self-sufficient and creative.

We knew that there would be a way for us to continue composing no matter how bad our hearing or vision would get. Nothing would stop us. This is what we believe today and continue to find new ways to do things. Whether composing music, traveling around the city of Austin, learning sign language and Braille, learning how to meet others like ourselves, or making great friends with many abilities, we live life energetically! Like Mom always said, “All Things are Possible.”

Editor’s note: You can explore some of Crystal and Danielle’s music on the web at .

Fall 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By Becky and Matthew Lowell, Parents, San Antonio , TX

Abstract: A family shares their experiences in attending their first International CHARGE Syndrome Conference this past July, and how the opportunity has impacted their lives.

Keywords: Family Wisdom, deafblind, CHARGE Syndrome, Texas CHARGERS, Inc., family training.

Laci Faith Lowell, our first and only child, was given the official CHARGE SYNDROME diagnosis in summer of 2008, a few days after her 2nd birthday. It was not alarming or upsetting, it would not change the way we thought of her or treated her, but it did open a whole new area of learning for us. We were familiar with each condition Laci had, many surgeries had been completed and therapies were in place, but we had never looked at it as a “collection”. We also lacked in the knowledge of what is yet to come—what we do NOT know.

A suggestion was made for us to attend the International CHARGE SYNDROME Conference in Chicago scheduled for July 09. We were excited to attend, but struggled with whether to take Laci with us or leave her with family. The decision was made to leave Laci at home; it would be our first time away from her and alone as a couple in a long while. We left San Antonio, TX on Thursday, July 24 for the 9th International CHARGE SYNDROME Conference in Indian Lakes Resort, Bloomingdale, IL.

We arrived at the hotel and we knew we were in the right place! Children who resembled our Laci were there and we immediately wished we had her along. Thursday night we settled in with anticipation of what the weekend would bring. The Conference started Friday with a wonderful breakfast provided for all in attendance. We were immediately approached by fellow Texans and again felt at home. The day started with a very interesting and appropriate presentation by Bryan D. Hall, MD, on how “it” all started, how the CHARGE Association (Syndrome) was first identified. The day continued with 4 breakout sessions with excellent information presented. Saturday started in a similar manner with another four breakout sessions to attend. Each breakout Saturday night ended with a carnival, a session had at least 3 different topics to great dinner, silent auction, and a special choose from, everything from new family sessions to cochlear implant  study results to what is the R & G in CHARGE. A few sessions my husband and I attended together; others we separated to get more information at once.  Being parents of a 3 year old, we felt blessed to have some of the sessions be a part of our past—one called the NICU experience and another important topic, anesthesia manage-ment—and did not feel the need to attend. Others we hope to tackle at a later date in our journey with Laci, such as one involving a positive vision for employment. Everyone in attendance is always in a different place with their own child, so a number of talks are always appropriate and useful. Some of the sessions that hit home with us included topics like what balance is and how it works, parenting a child with CHARGE SYNDROME, vision issues, and look at me now—a look into a family with an older CHARGE child.

We came home to Texas with questions and answers for our team of doctors and therapists. Laci is now wearing shoe inserts to help with her ankle stability and balance. We have also looked into some special needs planning to benefit her future due to information provided at the conference. Some of the greatest information was passed around between family and parents as we sat together throughout the weekend.

Saturday night ended with a carnival, a great dinner, silent auction, and a special concert by Rachel Coleman of the “Signing Times” series. We really enjoyed the music and know the great benefit sign language has played in our lives as well.

(Editor’s Note: This event was hosted by our very own Texas CHARGERS, Inc. and was noted as a huge success by all in attendance. Thank you, Texas CHARGERS, for sharing with the rest of the country this much enjoyed highlight of the conference!)

With all the activities, sessions to attend, and people to meet, one thing the conference did for us was remind us we are NOT alone. As we looked around at a room full of people having some of the same emotions we do, going through some of the same struggles we do, we saw smiles and laughter. The world was NOT passing us by, but we were all moving right along with it— just with a lot more heart, sacrifice, faith in life, and love for our kids.

The conference opened our eyes to a lot of things affecting our Laci now and I know the conference will be a wealth of knowledge to us in the future as well. We plan to attend the next one in the summer of 2011 in Florida, this time with Laci leading the way. Special thanks to the Texas Deafblind Project and DARS for helping us attend the conference this year, and for all the wonderful work they do for our children.