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Winter 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Christina and Pete Suarez, Harlingen, TX

Abstract: Parents describe the emotional process of sending their son to an overnight camp. Their reluctance did not prevent them from leaving him and the experience was positive for everyone. Keywords: blind, retinopathy of prematurity, ROP, camp

 

We have two boys Peter, age ten and Christian, age eight. Christian is blind due to ROP. Last summer we decided to try again and register Christian for summer Life Skills camp at TSBVI. The summer of 200 we signed him up but there was no room for him, which was okay for us because we were not ready for that step yet. In May, we received a letter that Christian was accepted to attend summer camp in July, 2009. Although, still not sure if we were ready I sent in all the forms that were necessary.

Summer came and we still had June to prepare for the trip to Austin. Soon July was here and we were ready for the trip to TSBVI. I had made arrangements for Peter and me to stay at my brother’s house in Austin so we could be close.

The day we arrived in Austin, my husband Pete, who had to go back to work in Harlingen, decided that he didn’t want to send Christian to the school because he had a runny nose. He wanted to turn around and take Christian back home. He still wasn’t ready for this step yet.

Because I spent weeks packing and getting emotionally ready for the trip, I didn’t want to just turn around and go home, so we talked and we decided that this experience was going to be good for Christian and for us. Going through the steps to take Christian to his dorm was easy. The hard part was to leave there without our son. I think it was harder for my husband, but we did it.

The next four days we would call Christian but he did not want to talk to us; I think he was having too much fun. Family and friends would call us to see how we were and we were doing just fine. Peter and I spent a lot of time together and we had a good time in Austin. The day came to pick up Christian and we were excited. We got to his room and gathered all his belongings, which were already washed, and sat down to talked to the staff. They also had pictures to show Christian’s activities which they put in an album for us. Everyone said they enjoyed working and playing with Christian.

On our way home Christian, whose speech is very limited, talked about the pool, rides he went on, the boat, and pizza. That was the first time I could understand he was describing things he did in school.

As first timers at Summer Camp, I think it went very well and I hope Christian can attend next summer. Thank you TSBVI for a great summer camp experience.

Winter 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Debra Garvue, Parent, Kentucky

Reprinted with permission from Deaf-Blind Perspectives, 17 (1), Fall, 2009.

Abstract: The author shares her reflections on how she came to learn from her daughter with deafblindness the answer to every parent’s question, “What will my child be when she grows up?”

Keywords: , deafblindness, futures planning, adult life

Editor’s note: Deaf-Blind Perspectives is a free publication with articles, essays, and announcements about topics related to people who are deaf-blind. Published two times a year (Spring and Fall) by The Teaching Research Institute of Western Oregon University, its purpose is to provide information and serve as a forum for discussion and sharing ideas. The intended audience includes people with deaf-blindness, family members, teachers, and other service providers and professionals. To learn more about Deaf-Bind Perspectives, check out their website at .

When you learn that your child is deafblind, you become consumed by many concerns. Once I accepted and understood my daughter’s diagnosis, I still had many questions: not just questions about her current needs like “What can she see?,” “Who is a good therapist?,” or “When will her IEP meeting be?,” but also questions about her future. The most basic and gut wrenching question I had was this: “What is my child going to be when she grows up?”

I found this question hard. I had watched my older daughter flourish. When she was little and played with a doctor’s set, I dreamed of her becoming a doctor. When she tried to argue her way out of punishments, I thought to myself, “Wow, she would make a great lawyer!” But the basic parenting rules I knew didn’t seem to apply to Maddie. I couldn’t find her case in any parent book. Dr. Spock had no advice for me.

Maddie was born with Leber’s Congenital Amaurosis. Generally this genetic disorder affects eyesight only. However, in addition to her vision loss, Maddie was born with bilateral profound sensorineural hearing loss, severe hypotonic (floppy) muscles, a seizure disorder, and sleep apnea. She only has light perception and can see some hand movements if they are made within one or two inches of her eyes. She is in a wheelchair and, because of her weak muscles, has a feeding tube and requires oxygen at night. At 9 months of age, Maddie received a cochlear implant and loves hearing with it.

Given all of Maddie’s disabilities, I still can’t help asking myself, “What will she be when she grows up?” It is like a nagging ball of worry in the pit of my stomach. The question haunts me! Will my child grow up to be something, or will she be an eternal companion whom I care for and who never leaves her mark on society?

Recently during a very difficult time, I had an epiphany, one of those rare moments when a light shone down and I knew the answer to that question. Maddie had recently been hospitalized for about ten weeks. She was on a ventilator for eight of those weeks, and for awhile it was touch and go. I watched her struggle to survive. When she was about a week into her struggle, I developed a website to let friends and family members keep track of her condition, and I was blown away by how many hits it received. It seemed as if everyone was reaching out to Maddie and my family. Friends and family members shared Maddie’s site with people they knew, and soon we were receiving hugs and cards from people I had never met. It was inspiring to know how many people were touched by her fight to live.

This led me to wonder, to contemplate deeply, how many lives has Maddie touched? Therapists? Teachers? Doctors? Nurses? Friends? Family? The list is endless. And I realized that I already know what my child will be when she grows up, because she is already it. She has chosen her profession and is practicing it now, and I know that she is already making a mark on society. She is changing the way people think and function in their daily lives. She has inspired me to leave my job as an educator and enter the field of deafblindness with the hope that I can make a difference. What is she? Why, she went into the family business. She is a teacher.

To read Maddie’s journal, go to: .

Winter 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Mashawna Thompson, Parent & Member, NOAH Board of Directors, Kansas

Abstract: The author shares her thoughts on why her family chose for their daughter with albinism to learn both print and braille.

Keywords: , visual impairment, albinism, dual-media instruction, parent education and advocacy

Editor’s Note: The following article is printed with permission from Parent of a Child with Albinism, a wonderful blog that shares her family’s journey with their daughter with albinism. Be sure to also check out the video, Perception is Not Reality, which was also developed by the author. Mashawna Thompson is a member of the Board of Directors for the National Organization for Albinism and Hypopigmentation (NOAH). The views and opinions expressed in this article are her own, and are not intended to reflect of the views of the NOAH Board of Directors.

 

Beginning this year, her first year of preschool, Lyra has been learning both print and braille. This concept is known as “dual-media.” I must admit, when Lyra was a baby, and we were still coming to terms with her condition, the LAST thing I wanted to hear was someone telling me that Lyra might need braille. Braille was for blind people and my baby was NOT going to be blind. Most of what I heard and read up to this point told me that Lyra’s vision would be good enough that she could read print and not need to learn braille. So how did I become such a strong supporter of dual-media?

The concept was first introduced by one of Lyra’s Teachers of the Visually Impaired, when she was receiving early intervention services. At this point I began doing my own research. I not only read dozens of articles and papers, I also talked to other parents of children with albinism and adults with albinism. I was beginning to realize that there was just not enough evidence to prove to me that Lyra would never need braille. I became convinced that for some situations, at various times in the future, braille might be her best option.

I learned that the use of braille may prevent or reduce eye strain, headaches, and neck and back problems caused by poor posture. With braille, Lyra would not be dependent on certain lighting conditions, print size, or the availability of magnification devices. If she has trouble reading her own handwriting, braille could be used for taking notes.

“I dream of being able to read a book myself, not through an audio book, and be able to read and read until I feel like stopping – not because I’m getting a headache or am tired of holding a magnifier or sitting in some strange position – but because I just want to stop,” (Heather Kirkwood, adult with albinism)

It’s true, the majority of people with albinism do not read braille. Why is that? It may be that they truly don’t need it. It could be that they were never given the opportunity to learn braille. “I would have benefited greatly from learning braille as a young kid, but indeed wasn’t even offered the opportunity until adulthood – an area where I feel the system let me down.” (Heather Kirkwood, adult with albinism)

Just because it’s the way it’s always been done, doesn’t mean it’s always been the right decision. “In the past, teachers struggled over the decision to teach braille to students who had the capacity to use print. However, students who were inefficient in print reading and writing had no alternative other than to struggle with that inefficiency.” (Koenig and Holbrook, 2000, p. 296)

I know there are many examples of people with albinism who excelled through school and went on to become very successful adults in lots of different career areas, but at what costs?

Marleena Coulston, adult with albinism, was introduced to braille in 7th grade, after her reading speed had begun to decline, but at that point, she says she was very resistant to it. “I most definitely have had to work harder than my peers, due to my eyes tiring from the heavy amounts of reading. Everything took twice as long for me to complete and do. Tests always took longer, my homework always took longer...I think that braille would have made a difference. I think it’s a good thing. I probably would have adjusted better if they had introduced braille to me at an earlier age.”

Past examples and trends do not prove that my child won’t need it. The ranges of visual acuities in people with albinism vary widely. I can’t predict if braille will be useful to Lyra in the future and neither can anyone else.

The purpose of her learning braille isn’t so she can get away with doing less. I want to enable Lyra to do more than just get by. I want her to have the confidence and ability to reach her highest potential. Her ability to succeed should not be limited by her visual impairment. I do want her to learn the value of hard work and even struggle at times, not because of her vision, but because she is continually provided a challenging curriculum. She needs to acquire the skills necessary to survive in the real world. She needs to know that she can’t truly become successful by constantly using her visual impairment as a crutch. I’ve stopped lowering my expectations and no longer focus on her limitations. I don’t make excuses for her; I let her try something again and again.

“The pupil who is never required to do what he cannot do, never does what he can do.”

(John Stuart Mill)

This decision we’ve made for Lyra has not been without criticism. Here are some of the arguments we’ve heard.

I’M TRYING TO MAKE HER BLIND.

I know that Lyra is not totally blind, which is why I don’t expect her to learn and rely on only braille. However, she is not totally sighted either, so why should she be expected to learn/rely on only print?

One of the reasons we were told, against her learning braille, was that she is primarily a “visual learner.” We agree that Lyra is a visual learner and want to optimize this strength when it’s most effective. However, it doesn’t mean that her vision will always be the most efficient way to access information. If relying on only her visual ability for reading causes her to fall behind her peers and often results in physical pain, why would she even want to read.

“The only books I have read for pleasure are books that I am EXTREMELY interested in reading. Had I learned braille I might have had more of a love for reading. I just looked at reading as a BIG CHORE.” (Margaret Mary Campbell, adult with albinism)

USING BRAILLE WILL MAKE HER LOOK BLINDER.

In my opinion, holding a book/paper an inch away from her face or sticking her nose down to her plate of food would be much more noticeable and make her appear “blind.” Using braille will not make her look different, any more than wearing head phones for audio materials, using a CCTV, or using a hand held magnification device would. Children will always notice differences, it doesn’t matter what the specific difference is. Our approach on dealing with this is basically just being aware and looking out for any social or emotional issues.

SHE WILL JUST READ THE DOTS VISUALLY OR WILL BE RESISTANT TO LEARNING BRAILLE.

Children will often look for the easy way out; it doesn’t mean we make learning something optional. If she’s trying to read the dots visually, there are lots of things we could try to help her break the habit… put a piece of paper over her hand or place a partition of some sort between her eyes and her hands. Learning braille is only as hard as the teacher makes it. If the teacher goes into it with the attitude and belief that kids with low vision CAN’T learn braille, it will affect that student’s confidence and ultimately his/her success in learning braille.

IT’S UNNECESSARY TO LEARN BRAILLE, WITH TODAY’S TECHNOLOGY. WHY BOTHER W HEN THERE A RE SO MANY OTHER OPTIONS.

There are lots of alternatives to braille available, low tech and high tech magnification devices, audio books, large print, and more, but there are limitations with all of them. Other than audio format, all of the other options are visual so there is still the issue of eye strain and fatigue. Of all of the available options, none of them are as versatile as braille. You can read braille in bright light, low light or even no light. Braille doesn’t require a computer, an audio player, or even electricity. You can’t assume that what works for one person will work for everyone. “I had a tough time adjusting to books on tape because my mind wandered. I’m actually, IRONICALLY, a “visual learner.” (Marleena Coulston, adult with albinism)

Chantel Alberhasky, parent of a child with albinism said, “It was once believed that technology would replace braille for people with low vision, but just as technology cannot replace print it cannot replace braille.” Technology has had a huge impact on the use of braille, not by replacing it, but by making it even more accessible/attainable.

Through the power of technology and programs like Book Share and Web-Braille, books in digital format can be downloaded from the internet and printed on an embosser for immediate access.

IT SHOULD BE HER CHOICE.

Yes and no. Lyra is not yet old enough to understand the importance of becoming a good reader. Even if when she is a little older, she becomes resistant to learning braille, I will still require her to continue her braille instruction. I’m sure many students have complained about learning how to read print, but we would never let them opt out of print reading simply because they didn’t like it. Yes, when Lyra is an adult, I want her to be able choose if, when, and where she wants to use braille. In order for her to truly have that choice, and really be equipped to use braille, she must be proficient and fluent with it. Of course she won’t think it’s useful, or recognize the possibilities with braille if all she ever learns is the braille alphabet. “My son is only finishing kindergarten, but he is learning braille along with print. I am just giving him the tools to help him be as successful as he can be,” said Chris Kramer, parent of a child with albinism. Braille is a tool, just like a Closed-Circuit Television (CCTV) is a tool. Neither can be used effectively with out proper training. With both tools, it is necessary to provide the child with the knowledge and skills required to benefit from its use. You must begin that instruction very early, before it’s even needed. When that child is older, he/she may or may not choose to use a CCTV or braille, but at least he/she has the knowledge and skills needed to really make that decision.

I’M CAUSING HER TO BE LESS INDEPENDENT OR MAKING HER MORE “DISABLED”.

According to Merriam-Webster, the definition of disable is to make incapable or ineffective; especially: to deprive of physical, moral, or intellectual strength. In no way am I trying to make her less capable or weaken her ability to succeed. I’m doing the exact opposite. I don’t want to limit her, I want to empower her.

“Don’t lower your expectations to meet your performance. Raise your level of performance to meet your expectations. Expect the best of yourself, and then do what is necessary to make it a reality.” (Ralph Marston)

I’ve heard too many examples of adults with albinism not being able to read for long periods of time and having slower reading speeds and suffering from intense eye strain and headaches. I can’t say for sure that when she is older, she will definitely experience eye strain and headaches, but I can’t say for sure that she won’t either. “As a year old I personally wish I had learned braille, especially with some of the things I’ve done in the workplace. I’ve had to give several lengthy presentations, too long to not have notes for... and it is not good PR to be constantly peering at a paper less than an inch from your face rather than looking at your audience.” (Julie Stevenson, adult with albinism)

The decision of whether or not a child should learn braille should be based on input from his/ her IEP team. It is not a decision that should be determined based on the opinion or recommendation of just one person, including a doctor. Information from medical professionals is very important and very useful and absolutely must be considered in the development of the child’s IEP. However, the decision to provide braille instruction is an educational decision, not a medical decision. When making that decision, the team must consider the child’s current needs and also his/her future needs. The reading requirements of a 1st grader are different in many ways than the reading requirements of a high schooler. As the print size gets smaller and reading requirements increase in amount and complexity, will the student still be able to keep up?

If you’re considering braille, your child should first be given a quality learning media assessment that evaluates your child’s abilities, not just in one controlled environment, but in a variety of settings. However, that alone cannot be the only determining factor. One of the provisions of IDEA is that a school may not use any single measure or assessment as the sole criterion for determining an appropriate educational program for the child. More information about the IDEA previsions regarding braille instruction can be found at the following website.<http://idea.ed.gov>

As of now, in terms of her cognitive abilities, Lyra is doing extremely well. She is very imaginative and highly curious. I expect her to excel in school. Why shouldn’t I? What if in our family, we expect more than just average academic performance? What good does it do a child to base goals on ideas such as “at grade level” and “proficiency”, if he/she is capable of excelling far beyond those standards? Someday Lyra may decide she wants to be a brain surgeon, or a chemical engineer, or who knows what else. I want her to be equipped with any tools/skills she might need along the way in order to accomplish that kind of success. I want to increase her independence and give her more flexibility. What ever she decides for her future, I will do everything I can to help make that possible.

It doesn’t matter if every child with albinism before her did perfectly fine without braille. Lyra is an individual. My husband and I are her parents and we are making this decision for Lyra. I won’t criticize parents who choose for their child not to use braille nor will I criticize adults with albinism who don’t use braille. That’s their decision. But don’t be so quick to judge me either. Please respect and understand that based on the needs of our child, we are making the best decision possible.

“Don’t limit a child to your own learning, for he was born in another time” (Rabbinical Saying)

REFERENCES

Holbrook, M. C., Koenig, A. J. (2000) Foundations of Education. New York: AFB Press.

Merriam-Webster. (2009). Disable. Retrieved August 4, 2009, from http://www.merriamwebster.com/dictionary/disable.

Winter 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Leslie Fansler, Tired Mother of the Famous Flying Fanslers, Amarillo, TX

Abstract: One parent shares her personal wisdom and humor on the importance of making sure individuals with deafblindness get plenty of sleep and exercise.

Keywords: , deafblind, behavior, sleep, exercise, adolescence

Editor’s Note: There is great opportunity to learn when families have the chance to get together and share their experiences with each other! Even when we’re not able to be physically present in the same room, virtual communities such as listservs and Facebook can be just as effective (see TAPVI article). This truth was brought home recently as a discussion unfolded on the listserv for members of the Deaf-Blind Multihandicapped Association of Texas (DBMAT). Through sharing personal experiences and lessons learned, a community reached out to one family and helped them think about options to address their child’s behavioral issues. Following is the advice that Leslie Fansler, a parent of a young adult with deafblindness, shared with the deafblind community. Her advice is relevant for everyone.

 

ALL teenage boys are challenges to parents! We speak from experience, being the parents of one son with deafblindness and one without. Socially, they tend to be half crazy. For instance, they like girls but have little idea how to express that in a way that any girl would appreciate. Maturity flips back and forth between secretly wanting to play with transformers and Tonka trucks and trying to be “grown-up” and cool. Hygiene is a big contest. Their feet stink, and they will NOT take a bath or use a deodorant unless you force them. (Their gym clothes have to be exterminated by the end of middle school.) Sleep? They want to sleep about 20 hours out of every 24! Oh…and the four hours they actually stay awake just happen to be between midnight and 4:00 a.m. Those wakeful hours, by the way, are usually spent lifting weights and listening to horrible music. Get the picture?

Both of our sons are now in their early 20’s. We all survived, so here’s my two cents on what got us through the teens. First, teenage boys need tons of SLEEP. Second, teenage boys need tons of EXERCISE. I can’t overstate how badly they need both from about age 12 to age 22. I don’t discount other supports teenagers with deafblindness need, but have found sleep and exercise vital needs that are easy to overlook.

SLEEP

Without enough rest, things get extremely difficult during those preteen-teen years. Often, in middle school, my oldest would come home from school on Friday and go straight to bed (at : 0 pm) and sleep until 2:00 pm on Saturday. This really freaked me out. I took him to the doctor, who impressed upon me that teen boys have really crazy things going on physically, emotionally, and socially. “Let him sleep!” he said. So make sure your guys with deafblindness sleep a LOT, because for them life is all the more confusing and more tiring!

EXERCISE

It is not a coincidence that middle schools and high schools are full of want-to-be jocks (excuse me, “athletes”). They have so much going on in their bodies that they have to MOVE a lot, and it has to be physically taxing movement. For our guys with deafblindness this is hard. They tend not to be in motion significantly on their own. You MUST find things they can do that are equal to running track, playing football, lifting weights, chasing girls, etc. They HAVE TO HAVE THIS. If your guy is not sweating several times a week, you will have MAJOR behavior problems, even with great meds and fabulous interveners. Use treadmills, stationary bikes, and the local gym (swimming pools are so great). Pre-teens and teen guys who do not sweat every week will do things like hit, pinch, punch walls, and throw things.

Preston works out, with support, at the gym four nights a week, for about two hours each time. It makes him sweat; he gets out of the house; he meets and greets people from our community; and he can do his best to flirt with girls. But best of all, he can SHOWER there!

In summary, as your guy with deafblindness reaches 12, my advice is to check with your doctor about medication options; make sure he has a communication system he can access and use; get a good intervener at school AND at home, and make sure—no matter what—that he gets lots of sleep and exercise. He’ll sweat more often, but he’ll also act nicer and sleep better afterward. It’s a great trade-off for occasionally stinking. Trust me!

By the way, did I say we’ve have recently adopted another little girl? Yes, the Fansler Clan now has two little girls (ages 6 and ). I did not realize how old and tired we were until the year old arrived. Pray for us!

Winter 2010 Table of Contents
Versión Español de este artículo (Spanish Version)

By Gabriel Cazares, High School Senior, Houston, TX

Abstract: A high school student with a visual impairment applies to become a member of the National Honor Society. He gives his motivation for wanting to become a member and the contributions he will make as a member of NHS.

Keywords: blind, visual impairment, glaucoma, National Honor Society

Editor’s note: Gabriel lives in Houston with his mom, dad, and two brothers. All the males have glaucoma. He participated in the school district’s choir programs until he fell in love with debate. He has been vice president of the debate team for 3 years. He holds leadership positions with the National Youth Leadership Network, the National Kids As Self-Advocates, and with his church youth group.

 

Often times people make erroneous assumptions when it comes to an individual with a disability. Our modern culture has portrayed negative images of people with disabilities. The world thinks that because someone is impaired they have to lower their standards and expectations in order for the individual to meet them. I, as a student with a visual impairment, feel insulted by this. One who is disabled can perform equally with their peers if they have the right skills, motivation, and determination to do so. One thing that sets me aside from the rest is the fact that I don’t ever take “NO” for an answer. If something doesn’t work the first time, I reconsider my situation, and think of other ways to approach the same problem until I come up with the best solution.

My biggest contribution to the Northbrook High School chapter of the National Honor Society is proving wrong stereotypical points of view that people may have about me. Even some of my fellow peers that have been with me since elementary school sometimes think that just because I’m blind things are handed to me on a silver platter. Even though I wish this was true, it is not. I have to work just as hard, and sometimes even harder than they do to achieve my goals. By becoming a member of the National Honor Society I will prove to everyone that just because I’m blind doesn’t mean that I don’t have the same potential to be as successful as everyone else.

Another fact that has motivated me to apply to be a member of the National Honor Society is to promote academic achievement throughout our school. Many students come in with the mentality that Northbrook is a school where academic achievement is not stressed. However, what I have learned through my four year journey on our campus is that school is only as good or as bad as you choose to make it. From my perspective those who want to better themselves have all the opportunities to do so in our school.

The final and most personal reason I would like to join the NHS is to show my younger brother that anything is achievable if you try hard enough. Coming from a Mexican/American background where all my siblings were on different academic levels, reaching a distinction like the National Honor Society is a significant accomplishment. I have people that I have admired for their tireless efforts to better themselves, and I would like to be the same for others. I may not be the smartest, the most talented, or the most popular; but whatever I do, I do it to the best of my ability. As an Honor Society member proving wrong stereotypical views, promoting academic achievement, and being a role model for my siblings and whoever else may be watching, are the three biggest contributions I can bring to the organization.

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

By Kareem Dale, Special Assistant to the President for Disability Policy,
Reprinted with permission of the author and photographer from the Whitehouse BLOG, .

Abstract: On Friday, June 26th, 2009, five young adults who are deafblind met with President Obama to help raise awareness of issues surrounding deafblindness.

Keywords: , deafblindness, Helen Keller Deaf-Blind Awareness Week, presidential visit

 

Another day at the White House, another chance for President Obama to make history for people with disabilities. And, he did just that. On Friday, June 26, 2009, President Barack Obama became one of the very few sitting American Presidents to personally greet and welcome persons who are deaf-blind to the White House Oval Office.

The group featured five young adults (Crystal Morales, Kelvin Crosby, Virginia Jordan, Divya Goel, and Jason Corning) affiliated with the Helen Keller National Center (“HKNC”) including a musician with two CDs to her credit, a surfer and aspiring field goal kicker, a Cum Laude graduate who wants to start a school, an aspiring restaurant manager, and a winner of the Wisconsin Council for Exceptional Children “Yes I Can” award for Advocacy and Independent Living. Two staff members and 3 volunteers from the HKNC also joined the young adults.

They were in D.C. to celebrate Helen Keller Deaf-Blind Awareness Week. This year’s theme for the week was Deaf-Blindness Didn’t Stop with Helen Keller. The focus of the week was to demonstrate that successful deaf-blind persons are still thriving and excelling long after Helen Keller.

The week culminated with their visit to the White House. They visited the White House in the morning, where they received a tour of the public residence. From hanging out in the First Lady’s East Reception Room, to playing the same piano played by Stevie Wonder, to visiting the China Room, the tour was a major hit with the young adults. They returned in the afternoon for the icing on the already incredibly rich cake to take a photo with the President in the Oval Office. The President congratulated the young adults on their accomplishments and reminded them that we remain committed to improving the lives of people with disabilities.

This visit was not and should not be viewed as a sympathetic thing for the President to do. Rather, it reflects this President’s commitment to, and understanding of, the desire for all people with disabilities to be fully integrated into society. These young adults are proof that if provided with the necessary supports and services, people with disabilities can and will achieve anything they desire. Recognizing Deaf-Blind Awareness Week by inviting these young adults to the White House further solidifies the extraordinary commitment of this entire administration to all people with disabilities.

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

by Chotu Sharma

Reprinted with permission from Chotu Sharma’s business brochure

Abstract: This article provides a resource for custom-made schedule boxes and information about the woodworker.

Key Words: blind, visually impaired, schedule boxes, Chotu Sharma,

If you would like custom-made schedule boxes, Chotu Sharma is your go-to guy! He makes boxes with one, two, three or four compartments in a variety of sizes.

He accepts orders for painted or unfinished boxes. He will also create a box to your specifications.

Standard four-compartment boxes come in bright white, kettle black or sunny yellow. All boxes are made from aspen, poplar, or pine. The sizes are:

  • Small: 14.5-inches long, 3.5-inches high, 4-inches deep, with 3-inch wide compartments
  • Medium: 18.5-inches long, 5.5-inches high, 6-inches deep, with 4-inch wide compartments
  • Large: 24-inches long, 5.5-inches high, 6-inches deep, 5.5-inch wide compartments.

Cloth compartment covers are available in black or white. These are attached with Velcro at the back of the box.

Shorter schedule boxes, with one, two or three compartments each, are also available. These are constructed with 3-inch, 4-inch or 5.5-inch compartment widths.

Chotu attended elementary school in upstate New York and middle school at Texas School for the Deaf. For most of his high school years, he was a homebound student in the Austin Independent School District; it was during these years that he developed an interest in woodworking. He graduated from AISD in August, 2007.

Chotu has always loved to work. He has been supported in his woodworking by Department of Assistive and Rehabilitative Services, his family, and several dynamic, dedicated, and caring teachers. He currently works with a job coach on a regular basis. Chotu is very proud of his boxes and excited to be selling them to people who appreciate and enjoy using them.

Chotu lives in Austin, Texas with his parents and his dog, Saffron. His grandparents from India visit often and reside with them for long periods. In addition to boxmaking and all kinds of household jobs, Chotu enjoys people, community trips, shopping, holidays and celebrations, taking pictures, puzzles, cycling, and movies.

To order any schedule box and to obtain a price list and shipping estimate, contact Chotu at or (512) 407-9188. Chotu works from a schedule of orders set up by date of receipt; new orders will be completed after November 1, 2009. September marks the start of Chotu’s third year of business.

Summer 2009 Table of Contents
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Excerpt from the U. S. Dept. of Labor, Office of Disability Employment Policy website

Abstract: This excerpt from the U.S. Department of Labor website discusses an in-depth survey of employers that reveals the importance of “soft skills.” Key Words: blindness, visual impairment, disability, employment, soft skills, workforce

What do employers look for in new employees? According to the 2006 report Are They Really Ready to Work? Employers’ Perspectives on the Basic Knowledge and Applied Skills of New Entrants to the 21st Century U.S. Workforce, it may not be what some young job seekers expect. This in-depth survey of 461 business leaders conducted by the Conference Board, Corporate Voices for Working Families, Partnership for 21st Century Skills, and Society for Human Resource Management reveals that while the three “R’s” (reading, writing, and arithmetic) are still fundamental to every employee’s ability to do the job, employers view “soft” skills as even more important to work readiness. The report also finds that younger workers frequently lack these skills, which include:

  • Professionalism or work ethic
  • Oral and written communication
  • Teamwork and collaboration skills
  • Critical thinking or problem-solving skills

In 2007, the U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) discussed the importance of such skills with the Circle of Champions, a distinguished group of U.S. businesses that have received the Secretary of Labor’s New Freedom Initiative Award for innovative and proactive efforts to recruit, hire, and promote people with disabilities. As part of this dialogue, the companies identified the competencies as key to the success of young workers in the 21st Century workplace. Go to for a discussion of these competencies and for additional resources.

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

News Release from Texas Health and Human Services

Abstract: This article announces the new online application for Children’s Medicaid and the Children’s Health Insurance Program (CHIP). Key Words: blindness, visual impairment, disability, health insurance, children, Medicaid, Children’s Health Insurance Program (CHIP)

Parents can now apply for state health coverage for their children from the convenience of their home computer at any hour of the day or night. A new online application for Children’s Medicaid and the Children’s Health Insurance Program (CHIP) is now available at .

“Over the past couple of years, we’ve made it possible for families to pay their enrollment fees or renew their CHIP coverage online,” said Texas Health and Human Services Executive Commissioner Albert Hawkins. “The online options have quickly become very popular, and I hope the online application will offer families another very convenient way to apply for health coverage for their children.”

CHIP and Children’s Medicaid provide 2.4 million low-income Texas children with health care coverage at little or no cost to the families. A family of four earning up to $44,100 a year may qualify for coverage.

The online application uses an interview format to collect information about the family’s income and expenses. The application takes about 20 to 30 minutes to fill out, and parents have the option of saving their work and coming back later to finish the application.

Once all the questions have been answered and the application is submitted, parents can use the website to check the status of their application. The state will send a copy of the completed application  back to the family for a parent’s signature, the family will need to fax or mail the state copies of documents to verify the family’s income and expenses.

Parents will need to have some information handy when completing the online application:

  • Social Security numbers for the children seeking coverage
  • Recent pay stubs or other information about the family’s income.
  • Information about expenses, such as child care, child support or alimony.
  • Information about any health insurance currently covering the children.

Families also can request a copy of the at or start an application by calling 1-877-KIDS-NOW (1877-543-7669) from 8 a.m. to 8 p.m. Cendren seeking coverage. tral time, Monday through Friday, except federal holidays.

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

By William “Bill” Daugherty, Superintendent, Texas School for the Blind and Visually Impaired

Abstract: Superintendent Daugherty discusses the remodeling project at TSBVI and the opportunity it presents to improve and expand TSBVI services and impact the field.

Key Words: William Daugherty, Texas School for the Blind and Visually Impaired, blind, visually impaired, remodel

The near-total rebuild of the TSBVI campus, to be substantially completed by 2012, is really taking shape. Foundations will be poured any day now and then the project starts heading rapidly upward. We’ll move into the new Main Building 600 at the beginning of the 2010-2011 school year, with many of the other projects following close behind. What all of this investment and effort needs to amount to is not a simple moving into new spaces. It is also a time to assess what we as a school do best—to do more of that—and to be sure that we are asking our statewide stakeholders what they want and need from us.

We have repeatedly heard from parents and others that the appearance of our campus and facilities is a big disconnect from the he services we provide. The new campus will bring nice changes on that front as our staff can put more attention to maintaining buildings and grounds that are in good shape, rather than spending so much time and money patching up the old stuff. Our goal is to capitalize on all of these physical improvements by looking top to bottom on how we serve our students and the state, and how we go about the business of operating the campus.

Several key areas of concern and opportunity come to mind as we look forward:

  • How do we best equip and maintain this wonderful new campus for future generations of students and educators? Yes, kids return to their home districts or graduate from here, and staff retire or move on to other opportunities. Within two decades it will be rare for anyone who is here today to still be working at TSBVI. We are building this new campus as much high quality of the services we provide. The new campus will bring nice changes on that front as our staff can put more attention to maintaining buildings and grounds that are in good shape, rather than spending so much time and money patching up the old stuff. Our goal is to capitalize on all of these physical improvements by looking top to bottom on how we serve our students and the state, and how we go about the business of operating the campus. Several key areas of concern and opportunity come to mind as we look forward: for those that follow as for those of us who are here now.
  • How do we best meet the needs of the state in which we reside and to whom we are responsible for being the primary central resource for services and expertise? We’ve got to ask a lot of questions of our stakeholders and we’ve got to be prepared to listen and respond. Most of what we do and how we do it now will continue to be highly regarded by the people and systems we serve, but if we ask and listen we’ll also hear new opportunities to improve and expand our impact in collaboration with our statewide partners. The continued relevance of our school absolutely depends upon this.
  • How do we ensure that we are achieving our shared goal of maximizing each student’s learning, independence, and sense of self-worth? We’ll need to increasingly foster a culture of accessibility to all information used by both students and staff. Just look around our campus and you’ll see important print and graphic information that is largely inaccessible to some of our coworkers and to many of our students. We’ll need to foster even greater levels of independence in our students with a combination of higher expectations and the time for them to figure out where they are and what they are doing with fewer prompts and assists from staff. This doesn’t mean less supervision—it means, among other things, more wait time and less talk during activities. Many of you are experts on this, and you need to spread the word to the rest of us.

As challenging as this construction project has been, people seem genuinely excited about the future it heralds. I’ve pored over every architectural plan and drawing, and it is still really hard for me to envision what TSBVI will actually look and feel like in 2012. Clearly, a parent or a local Teacher of the Visually Impaired driving up to scope out the campus for a prospective student will get a feel from the outside that’s closer to the feel of what’s happening in the instructional programs. There is no greater concentration of talent and creativity in any School for the Blind than exists at TSBVI, and there has never been a more important time to put all that to good use as we chart our path.