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A Publication about Visual Impairments and Deafblindness for Families and Professionals

 

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Amita Srinivasan, author and Photographer, Dallas, Texas

Abstract/Editor's Note: Amita Srinivasan’s book, I want you to know... was published in May 2015. Amita, who is 16 years old and has CHARGE Syndrome, wrote the book with the aim of giving voice to what she teachers and parents should know and understand about a child with special needs.

Keywords: Family Wisdom, Charge Syndrome, Deafblind, special needs awareness, self-determination, photography, publishing, advocacy

 

Tell me about yourself.
Sixteen years ago a doctor told my parents I cannot hear or see or even have a voice (I had paralyzed vocal chords at birth). I was diagnosed with Charge Syndrome. I am profoundly deaf, blind in one eye with central vision in the other eye, was fed by a g-tube for 9 years, have no sense of smell and had so many surgeries that I got sensory aversion. When I was born I faced a very bleak future but many people came together to help me. I have never let my poor vision and hearing stop me. I've had many surgeries but I am a fighter. I want to be a teacher when I grow up!

Beautiful orange flower.Any particular reason you want to be a teacher?
I am a rising junior today but so many teachers helped me reach here. From PE, mobility, vision, speech and communication to Stoichiometry, Conics and the French Revolution! All my teachers, my parents and others never gave up on me and helped me reach for the stars. I don’t think I would be here if they hadn’t helped me, taught me and encouraged me. I think it’s kind of my turn now. I want to give back to my community and society and help kids learn.

What inspires you?
Nature, I love nature photography. I started photography when I was about five years old. My parents used the PECS (Picture Exchange System) to teach me communication when I was a baby. Later when I was about five years old, I would take a picture symbol and then enlarge it to see details and then glue it on the walls of my house. Now I focus on nature photography.  I have a website “ami fine art photography” where I post my best pics.

My second passion is advocacy. I used to be really scared to speak up for myself and be worried that it would make me look different in class. But I kind of learned to speak up and ask my teacher or ask for help if I had trouble with something. Then my teachers in the ARD committee and my parents said I could lead my IEP. I slowly got the confidence to speak up in the meeting. I want to speak to all kids now and tell them, “Don’t be scared; be yourself and speak up for yourself and others too”.

Tell me about your book.
I like to combine my photography with some of the things that I read and also with what I have learned about myself. I published a photography e-book on Kindle. It has some of my best nature photographs with captions. It is called I Want You to Know. It's about things I want all parents and teachers to know.

What made you write the book?
Many people like my teachers and my aunt saw my photographs and my website. Everyone kept saying that I should publish my photographs or have an exhibition. Sometimes I write articles like the one I wrote for Charge Accounts in 2014 called “Accommodations and IEP Goals for the Multisensory Impaired Student.” I thought I could combine both my passions. I thought about what I would want everyone who meets me to know. Things like why do I like structure and routine?  I am blind and deaf, it is tiring and a lot of effort to listen and look all day long with what vision and hearing I have. I work really hard and it is not obvious. That is why I like structure and routine. I really don’t like things to be moved around too much and I get nervous and tired in new environments. These are things my new teachers or new friends don’t realize when they first meet me. I came up with a lot of things that I would like people to know about me or any other special needs kid like me. Then I matched them to my best photographs.

Tell me your favorite thing about the book.
My favorite part was actually reading the reviews on Amazon and also when my teachers emailed my mom after reading the book. I felt very happy because I had dedicated the book to all my teachers. My favorite photograph from the book is the one with the duck digging in the mud. The caption says “See what I can do, not what I cannot”. I think this is so important. Many times even my own parents forget this. They get really worried about the future and focus on what I cannot do. Then I get stressed too and don’t feel like working or just feel like quitting. I hope parents and teachers always remember to focus on what a kid is really good at and then use that to teach other things. I took chemistry in 10th grade and I totally failed in the first six weeks. My parents were ready to quit but my teacher, Ms. Lee, encouraged and praised me and told me how I was really good in the free responses and the math part. She told me how I could use my skills to improve in other areas. I was encouraged and really worked hard in her class because I wanted to make her proud of me. I aced that class. I may do things slower and differently from others but I want to be appreciated and encouraged for who I am. I think this is true for anyone.

Editor's note: Amita has been selected to the District 67 Student Leadership Advisory Council by Texas Representative Jeff Leach. Here is the press release from the Texas House of Representatives. http://www.house.state.tx.us/news/press-releases/?id=5727

 

A dandelion seedhead with seeds blowing in the wind.A dandelion seedhead with seeds blowing in the wind.

Do you really see me?

See, Hear, Smell and Taste

I don’t do that

Fall leaves blowing in the wind

Airplanes piercing the clouds

Swirly Cinnabons baking in the oven

Rough barks of old gnarly trees

Caramel drenched apples sprinkled with nuts

Alien

 

Don’t cry

Sad eyes salty tears

 

See who I am

Deaf Blind Anosmic

No

Accept me, see what I am

Cute, funny, quirky

HAPPY

Hold me

I feel your love

Hug me

I know your love

It makes me reach for stars

 

Amita’s ebook can be purchased on Amazon.  

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Daniel Houston, Editor, Kye R. Lee, photographer, The Dallas Morning News. Reprinted with permission by The Dallas Morning News, originally published February 20, 2015

Abstract: The author shares one student’s experience participating in the NASA Space Camp for students with visual impairment.

Keywords: family wisdom, visually impaired, expanded core curriculum, camp, vocational development, leadership, peer connections

 

For most kids, NASA Space Camp is an unforgettable experience. Abulusine Kamara was afraid he wouldn’t remember much of it at all. The Liberty Junior High School seventh-grader who goes by “Lee” is visually impaired. He said he has trouble remembering enough details to form lasting memories when he’s nervous or frightened — as he was in September, surrounded by strangers he could barely see at Space Camp for Interested Visually Impaired Students (SCIVIS) in Huntsville, Ala.

But Lee said he was able to settle his nerves through a daily calming exercise.

“I was just thinking about what we were going to do for the next day,” he said. “It helped me not be afraid of the kids downstairs, because there was a lot of them. So I was trying not to be so nervous of what we were going to do, and trying not to be so overcome that I [couldn’t] actually go back and remember the time I was there.”

As he recalls Space Camp now, Lee walks through an orderly mental list of details to help him reconstruct the experience. When asked the first thing he remembers about the camp, he starts from the beginning — getting off his first plane ride without his parents; picking up his luggage at baggage claim; riding over to orientation.

Through these details, Lee is able to reflect on the challenge of balancing the camp’s agenda, keeping up with schoolwork from back home, making new friends and overcoming that initial fear.

Mary Ann Siller, a Richardson ISD teacher for students with visual impairments, said hands-on experiences like this space camp can help students take a step forward in their learning. She said she has observed similar progress in Lee in the time since he attended the camp. “The impact of vision loss can be really profound [on learning],” Siller said. “It distorts what that child’s images of the world are, and perception.”

One of the camp missions, as Lee remembers, was to construct a cube-like object in an underwater environment. Crediting teamwork, Lee said he and his group of other children with visual impairments were able to successfully complete the mission. “It was quite an achievement,” Lee said. “We felt proud of ourselves — about [what] we did and the team that we had.”

Photo of Lee Kamara
Photo of Lee Kamara

In another key moment, Lee said he served as commander of a simulated landing mission. He had to learn a script of commands and buttons to press, and communicate it step by step to his crew. With a bump, the simulator informed the crew it had landed the craft successfully.

Although the number varies, about 20 kids from Texas attend the SCIVIS camp each year, said Jim Allan, accessibility coordinator for Texas School for the Blind and Visually Impaired in Austin. Allan said the experience can be a huge confidence booster for kids who are used to being treated according to their limitations. 

“That’s what makes Space Camp so cool, because there are no limitations,” Allan said. “You can fly the shuttle. You don’t have anybody telling you ‘You can’t do this,’ or ‘You can’t do that.’ … It really affects them.”

The camaraderie established in the missions carried over to the campers’ free time, Lee said.

“At first I didn’t know who they [were], so they told me their names [and] I told them my name,” he said. “Then we talked about what we like to do. We had some things in common, so I just got to know them for a short time.”

This is an important process for kids, Siller said, and is particularly useful for children with a common obstacle like blindness or visual impairment. “Having a peer group that they could make connections with is so vital for any group of kids,” Siller said. “He met kids with visual impairments and had a peer group that he could make friends with easily.”

This type of connection is rare for visually impaired students, who are often the only ones in their classes and home environments dealing with their particular disability. “We’re used to seeing people who look like us, no matter what shape we’re in,” Allan said. “But … the population of blind people is not that big, so they may never come across another kid who’s blind.” 

 

Lee Kamara using a video magnifier to read a textbook.
Lee Kamara using a video magnifier to read a textbook

To help pay for the camp, Siller helped Lee apply for a grant from Northrop Grumman Corporation, which offers Space Camp scholarships for visually impaired students in the greater Dallas area and selected parts of the country.

At Liberty Junior High, Lee is enrolled in regular classes. He uses special telescopic magnification devices to hone his vision so he can see what’s on the board. Siller also checks on him regularly.

His main extracurricular activity is playing trumpet with the school band. His favorite way to spend time, he said, is playing outside with his brother when he gets home from school. Although Lee hasn’t settled on a career down the road, he expressed serious interest in becoming an architect of devices that make people’s lives better — possibly in health or another field.

No matter the path he chooses to take, he said his experience at Space Camp will help him moving forward. “It helped me the most [with] my schoolwork and what I would be doing next in my future if I wanted to do things by myself,” Lee said.

Editor's note: for more information about SCIVIS Space Camp including 2015 photos and dates and prices for 2016 camps, go to the following link: http://www.tsbvi.edu/space/ 

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Scott Bowman, Interim Assistant Commissioner, DARS Division for Blind Services

Abstract: The author shares his observations and the insights of a high school student with vision impairment competing in the 2015 UIL Track and Field State Championship.

Keywords: family wisdom, sports, adaptations, confidence builders, self determination

 

In the process of compiling some information on Division for Blind Services (DBS) accomplishments and upcoming events, I learned from our Tyler field director, Donna Williams, that the University Interscholastic League (UIL) 2015 Track and Field State Championships were scheduled the weekend of May 14-16, 2015.  I have to admit that track and field events are not something that I ordinarily pay attention to, except that she mentioned Charlotte Brown would be competing.  Charlotte, as some of you may recall, is a long-time DBS transition consumer from east Texas and a pole vaulter and track star.  I have been in this business for a long time, but I have to admit that the list of successful blind pole vaulters that I have known is a very short list.  The girl’s 4A conference pole vaulting championships was going to be in Austin on May 16, so I got in touch with her transition counselor, Dan Chamness, from our Tyler office and got the details.  I quickly cleared my Saturday morning schedule of other pressing engagements (such as mowing the lawn) and drove down to the University of Texas athletic fields. This event was in the Mike Meyers Track Complex.  Dan was in Austin and met me at the field, oriented me to the event and introduced me to Charlotte’s family and friends.  Her parents, Ian and Stori Brown, and several others were sporting custom printed t-shirts, promoting Charlotte’s final UIL competition.  I felt a little underdressed with my DARS DBS red polo shirt, but that was the best I could do on short notice. 

The competition itself was intense and exciting to witness from the bleachers just a few feet away from the track area.  The long, flexible poles that the young women manipulated seemed very unwieldy, but did the trick in helping with the 10 and 11 foot vaulting efforts.  Charlotte used to lay out a contrasting strip of dark-colored turf along the edge of the runway to offer some contrast for her run up to the point where she has to plant her pole.  These days, the only accommodation was an audible beeper that was strategically placed where the pole is planted for the jump.  Sheer determination and endless hours of practice and discipline seemed to pay off for Charlotte.  Her best vault at the 11’6” height was good enough to secure a third place podium finish for Charlotte (and her dog guide, Vador, who took over the actual podium at the critical time).  After the medal presentations, the winner and the runner up seemed to fade into the crowds, as ESPN and several local news media personnel literally surrounded Charlotte.  As always, Charlotte was very gracious and spoke about overcoming obstacles (not in the literal sense, but in terms of challenges that life can present).  I managed to take a few more snapshots of Charlotte with one of her brothers and another with Dan Chamness before we left the complex.  I wished her well with her move to Purdue in June, where she will join her older brother in the track and field program there.  My lawn work is still waiting, but what a wonderful opportunity it was to see one of the success stories that DARS has assisted over the years. 

Good luck, Charlotte!

 

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Anne Schultz

Abstract: Camp Abilities is an overnight, developmental sports camp for children and youth with visual impairments, blindness, or deafblindness. Their first goal is to empower blind, visually impaired, and deafblind children and youth to become active in sports.

Keywords: camp abilities, blind, visually impaired, adapted physical education, adapted sports

 

On July 4, 2015, a unique set of athletes and coaches celebrated not only the birth of this country, but also a very special anniversary. During the week of June 28, campers and counselors at Camp Abilities commemorated the camp’s twentieth season, culminating with a reunion on July 2 for former campers, counselors, and staff. Camp Abilities has now helped an entire generation of children to discover just how much they are capable of.

A Place to Play—and More

Each summer, campers—or “athletes” as they are called—at Camp Abilities’ 17 U.S. locations and six international locations learn to play adapted sports like goalball, beep baseball and beep kickball as well as more mainstream sports like tennis, archery, tandem biking, kayaking, swimming, and track events. Sport specialists lead the activities, and each athlete works with a counselor or “coach” who provides one-on-one instruction and mentoring throughout the day. For many of the athletes, their time at Camp Abilities marks the first time they have ever played sports. “Before camp, many participants are unsure of their ability to participate in physical activities,” the camp’s founder, Dr. Lauren Lieberman notes. “Ultimately, the children learn that they are athletes.”

At Camp Abilities, they not only blossom into athletes, but they get to do so with peers like themselves. From this, lasting relationships are born. “It’s like a family,” says former camper and now coach David Briggs. “Every year is like a big reunion.” According to Dr. Lieberman, marriages have even resulted from bonds that were formed at Camp Abilities.

These bonds extend to the coaches as well. Each coach gets to know his/her assigned athlete so that s/he can tailor instruction specifically to that athlete’s unique needs. Beth Foster, a long-time coach and now assistant director at two Camp Abilities locations, described how she learned to communicate with a deafblind athlete by signing into his palm and even by making up her own signs. By the end of the camp session, the athlete had gained enough confidence to scale a challenging rock-climbing wall and to jump off a diving board. “I was pushing him to the limit that every athlete gets pushed to, and he just wouldn’t give up,” she says proudly. Foster has been so inspired by the experience that she is now a Certified Adapted Physical Educator (CAPE) and is working toward a doctorate in adapted physical education and kinesiology at Texas Woman's University.

By the end of the camp session, athletes and coaches are all “crying with emotion,” according to Dr. Monica Lepore, who helped Dr. Lieberman found Camp Abilities Brockport and later founded a Camp Abilities in West Chester, Pennsylvania. “The coaches are always overwhelmed by the transformation in their own lives and in the children,” she says.

Photo of a student doing gymnastics.
Photo of a student doing gymnastics

How It Works

It might be hard to imagine how children with visual impairments can play mainstream sports, but Camp Abilities has its techniques down to a science. Athletes start out by playing games that incorporate touch-based communication and auditory cues. They use a tactile map of the court to get an idea of its dimensions and positions.

Then, the athletes move on to playing modified versions of mainstream sports (including modified versions of Wii games in the evenings). For the 50- and 100-meter dashes, for example, some athletes hold onto a waist-high guide-wire that extends the length of the track, while others are able to see special high-contrast markings on the track. For longer races, athletes may use a shoelace or short rope called a tether with sighted guides who run alongside them. The athletes also learn strategies to modify sports and recreation activities for their specific visual needs, as well as advocacy techniques to ensure that they are included in sports at their schools when they want to be. At the end of camp, each child receives an in-depth assessment of his or her performance, achievement, and abilities in the sports and recreational activities. This information can be shared with his/her parents and physical education instructors. 

To help the athletes get there, hundreds of students volunteer as coaches. These students are studying to be teachers of students with visual impairment or are enrolled in various relevant programs such as physical education, adapted physical activity/education, special education, orientation and mobility, and intervener training programs. Before camp starts they receive over 12 hours of training in specific techniques for teaching physical education, sports, and recreation skills to the athletes. The training benefits not only the athletes at camp but also thousands of other children, because the coaches continue to apply what they learned at Camp Abilities throughout their teaching careers. 

Photo of a young student playing beep baseball.
Photo of a young student playing beep baseball.

The Four-Fold Mission of Camp Abilities

Camp Abilities’ first goal is to empower blind, visually impaired, and deafblind children and youth to become active in sports. But the organization has other ambitious objectives, too. As its founders see it, Camp Abilities serves three additional purposes: 1) to educate undergraduate and graduate students and teachers about teaching children with visual impairments, 2) to conduct research on best practices in physical activity among children with visual impairments, and 3) to provide support to the families who care for children and youth with impairments.

With its in-depth training of coaches, Camp Abilities has become a world leader in providing field-based training for professionals working in this area. The training addresses eye conditions and their effect on participation and learning during physical activity, facilitation of orientation and mobility concepts, developmentally appropriate ways to interact with children, assessment and record-keeping, and the introduction of the sports themselves.

Camp Abilities wants to extend its influence beyond its coaches and athletes, and so several research projects are conducted each year at Camp Abilities Brockport to learn more about physical activities and intervention strategies that work for people with visual impairments. Many of these research projects have exposed athletes to state-of-the-art technology—such as talking pedometers—that can enhance their physical activity experience. Camp Abilities has also contributed numerous books, practical and research articles to the fields of physical education, adapted physical education, and teaching for individuals with visual impairments. “Everything we produce helps kids who are not involved in our camps, so our camps have far-reaching effects on all children with visual impairments,” says Lieberman.

Last but certainly not least, the support Camp Abilities provides for the families of children with visual impairments means a great deal to these dedicated caregivers. This support can extend beyond the camp session, because when the children return home, they are more able, independent, and confident in their abilities. At camp, they have learned to try new things and take risks; they are therefore more willing to do the same in “real life.” “We show the families what their child is capable of doing with just some small modifications,” Foster explains. “To hear that they can do (these things) must be empowering for the families as well.”

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Salvador Villa, student at Memorial High School

Abstract: A high school blind student tells how he was awarded the keys to his city of McAllen.

Keywords: blind student, mentoring, percussionist, JROTC, NFB

 

Sal and his mother with the Key to the City of McAllen.
Sal and his mother with the Key to the City of McAllen.

I am currently a junior at Memorial High School in McAllen Texas and I participate in several extracurricular activities in my school and community. Currently I am a percussionist in the high school band and a sergeant in JROTC program. I have been blind since birth but I have not let my disability stop me from achieving my goals. In the future I’m planning to become a lawyer and a leader of the state affiliate of the National Federation of the Blind (NFB).

Also I plan to help other blind children like my mom and my mentor Daniel Martinez have done in the last few years. Helping others became one of my goals when I started to volunteer in the NFB BELL (see Braille Enrichment for Literacy and Learning) program that comes to the Rio Grande Valley every year. What motivates me to do this is seeing how the young students improve in school and in their lives. I enjoy showing others that being blind does not and should not mean anything to anyone.

In May, I had the honor and privilege of receiving the keys to the City of McAllen. I received this award in recognition of my perseverance, dedication, and accomplishments and for inspiring others to perform beyond their expectations. What really means a lot to me is how the plaque is made. On top, it has a key that says City of McAllen, on the bottom the reason I received the award is engraved in Braille and print. It was a memorable day and I am glad I was able to share this moment with my family, teachers, and some of the members of my NFB chapter.

Editor's Note: Watch the news video of Sal performing in the band and presenting the JROTC color guard along with him mentoring a young blind student. http://youtu.be/Zx_JRPmJ5ls

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Crystal Johnson, TAPVI Secretary

Abstract: A parent of three teens with Retinitis Pigmentosa shares her thoughts about the NAPVI 2015 National Family Conference.

Keywords: blind, visual impairment, parenting, families

 

The NAPVI 2015 Conference in Chicago was a very informative and touching experience for me and my husband, Jason. We have three boys affected by retinitis pigmentosa (RP) and have been learning about the disease for the past six years while trying to keep up with our kids and decide exactly what they need, why they need it, and how they need it for it to get done.

We listened to doctors that are dedicated to finding ways to prevent and treat different eye diseases. We heard about stem cell research, gene therapy, neuro-protective factors and photoreceptor transplantation. It was refreshing to learn about the progress that has been made in research. The doctors shared the outcomes of several case studies. Parents were warned to choose wisely before including their own child in a research study. Being in a research study in the early stages may prevent your child from participating in future more promising studies. Surgical studies particularly are concerning because they could cause irreversible damage.

We received information about the transition to college and scholarship opportunities. We learned how important it is for students to be connected to school and the community, to be prepared to learn and participate and to be ready for all opportunities.

Matt Simpson from USABA (United States Association of Blind Athletes) was one of the keynote speakers. He spoke about growing up blind and wanting to play sports. He was extremely inspiring. Our kids are very athletic and involved in school sports and we worry about what will happen when that is no longer available to them. With USABA there is an answer and we are excited to follow up and get our sons involved in this organization at the local level.

We attended a FamilyConnect session that showed how the website links families to information, help and support. They asked for feedback from parents so they can be sure the website is relevant. We met Emily Coleman who is a parent of a child with a visual impairment and a teacher of the visually impaired. Emily responds to questions and comments posted on FamilyConnect and has her own blog.

Everyone at the conference was so welcoming. I plan to keep in contact with some of the wonderful families we met from a variety of states. The information was overwhelming and I’m trying to sort through all of it. The most inspiring were the other families. I’m learning to be more patient with my children.

It’s not easy to understand what our children are going through on a daily basis. I don’t know what to expect in the future but that will not stop me from learning. I realized that a truly special child is one that overcomes anything that tries to stop them no matter the disability. When the child acts like it’s no big deal on top of it…that’s inspirational. I’m grateful to have had the opportunity to attend this conference and I encourage others to join the NAPVI families.

Go to “Faces of TAPVI” on Facebook for more information.

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

Your child’s optometrist has recommended that he or she receive special services for children with low vision. This information is for you to use as you prepare to speak with your child’s teachers and school administrators.

If your child has an Individualized Education Program (IEP) (ages 3 - 21), his or her school will provide:

  • Access to the general education curriculum
  • Accommodations
  • Special education and related services
  • Assistive technology services

Low vision services apply to these provisions. They should be, but are not always available through IDEA. They include:

  • A clinical low vision evaluation
  • The purchase of optical and/or electronic devices, and
  • Instruction in the use of the devices

 

Clinical Low Vision Evaluations

These evaluations are conducted by ophthalmologists or optometrists with a low vision specialty and are considered a “related service.” Under IDEA, there are two related service provisions that apply to this evaluation. 1) a medical evaluation to improve a child’s functioning within special education, and 2) an assistive technology evaluation. For a child with low vision, one part of a clinical low vision evaluation is to determine if optical and/or electronic devices will assist your child.

 

Assistive Technology

Under IDEA, schools purchase assistive technology devices that will improve your child’s functioning in school. Once a device is included on an IEP the school becomes responsible for purchase and maintenance of the device. If a child needs a device for homework, and it cannot be transported home, a duplicate device may be purchased by the school.

 

Instruction in the Use of Optical and Electronic Devices 

IDEA also provides for instruction in the use of assistive devices. For optical and/or electronic devices that will be used in classrooms and within your child’s school, your child’s TVI will provide this instruction. This instruction includes the use of handheld, spectacle mounted, and electronic devices for seeing at near (e.g., books) and at a distance (e.g., whiteboard). A certified orientation and mobility specialist  (COMS) will provide instruction for your child in the use of distance devices for such tasks as reading street signs and finding addresses. They are ready to help your child to use his or her functional vision.

 

I hope this information is helpful to you. Please contact your child’s school to request low vision services. For a copy of the IDEA law, go to: http://www.gpo.gov/fdsys/pkg/PLAW-108publ446/html/PLAW-108publ446.htm

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Chris Montgomery, Deafblind Education Specialist Texas School for the Blind and Visually Impaired

Abstract/Editor's Note: Students with deafblindness (DB) are considered a low-incidence population nationally. These students require specialized support to access environmental information, to develop communication, and to develop concepts about the world around them due to the significant impact caused by the combined loss of vision and hearing.

Keywords: deafblind students, mentor program, teachers

 

Unique Needs of the Deafblind Student Population

Students with deafblindness (DB) are considered a low-incidence population nationally.  These students require specialized support to access environmental information, to develop communication, and to develop concepts about the world around them due to the significant impact caused by the combined loss of vision and hearing. Although local districts may provide vision and hearing services, there is often a gap in specific planning and programming to address their educational service needs due to the lack of available professionals with training specific to deafblindness at the local level. Many districts struggle to find the internal resources to accommodate the educational needs of these students and their families (Blaha, Cooper, Irby, Montgomery, & Parker, 2009).

The creation of regional centers for children with deafblindness began in the 1970's. These centers provided a national network for pilot program development, and sharing of information, and tended to be staffed by people with specialized training. The regional centers had the responsibility to develop direct service for children with deafblindness, prior to the enactment of mandatory educational legislation. While acknowledging the shortcomings of this time period – notably, the segregation of the deafblind student population - there were two significant characteristics that should be mentioned: the proliferation of college programs dedicated to personnel preparation in deafblindness, and stable federal funding. These programs were able to insure a steady supply of trained teachers and specific teaching practices designed to serve these students to develop within the field. (Collins, 1993).

Following the 1970s, educational philosophy shifted away from centralized programming and toward local inclusive settings. As the population of students with deafblindness moved to local communities it has presented some challenges for students with low-incidence disabilities as well as some benefits. With students who are deafblind being served at the local level, they have greater access to the standard curriculum. Recent national child count data shows over 60% of students who are deafblind are attending local schools and 26% are participating in standard instruction (Schalock & Bull, 2013). In addition, students who attend local schools are able to live at home and participate in their family's daily routines. 

The picture, however, of access and support for students is a complex one.

Many local school districts have difficulty providing appropriate instruction in the classroom. They may be unable to provide dedicate personnel to a position focused on such a low incidence population. In some districts in Texas, The Texas Deafblind Project has seen an increase in hiring interveners (trained paraprofessionals) to provide students with access to information, communication and social support.  Although the role of the intervener is designed to provide direct support to students, it is not meant to replace the role of teacher, who is charged with designing instruction and providing guidance to the student's entire educational team. When a student does have access to an intervener, our outreach staff members have observed challenges when that intervener does not have access to support from qualified professionals. Such challenges include the student not having access to appropriate assessment, lacking deafblind specific IEP goals, and family members laking information about the intervener’s role on the team. Our team’s collective experiences with these challenges caused us to examine both the need for teacher training and the role of the teacher in serving students who are deafblind.

Recently, the Office of Special Education requested that National Center on Deaf-Blindness (NCDB) engaged in a national assessment of the needs for improving intervener services in the United States. This survey included consultation with parents, technical assistance providers, administrators, higher education faculty members, interveners, and teachers. NCDB found a need for more teachers of students with deafblindness to support the intervener practice.  NCDB specifically recommended that interveners have “knowledgeable supervisors and access to experts in deafblindness that may provide consulting and coaching”, thereby bolstering the intervener’s role and providing more comprehensive educational planning for students who are deafblind (NCDB, 2012).

A few university personnel preparation programs provide designated coursework for professional service students who are deafblind, currently only two states, Utah and Illinois recognize specific certification for a teacher of students with deafblindness.  Nationally, teachers of students with visual impairments (TVI's) and teachers of students who are deaf and hard of hearing (TDHH) are providing much of the support for IEP development and classroom instruction. In many cases, these two teaching disciplines lack the expertise specific to teaching children with deafblindness, and local and regional support is provided by state deafblind technical assistance projects.

The field of deafblindness is currently supported, in large part, by federal grant funding to the state deafblind projects. Without recognized state or national certification and dedicated money for well-established personnel preparation programs for teachers of students with deafblindness, our field is in a precarious place.

The Beginning: Mentor Program Teachers of Deafblind Help Define and Explore the Practice

In an effort to develop and enhance educational services to students in Texas who are deafblind, the Texas School for the Blind and Visually Impaired (TSBVI) mentor program initiated a pilot project in 2009.  Five teachers were selected in three education service center regions to take part in this Deafblind (DB) Mentor Project based on their dedication to deafblind students.  For the first three years of this pilot, each teacher participated in training provided by Robbie Blaha, who is a certified teacher of students with visual impairments, as well as a certified teacher of the deaf and hard of hearing.  Ms. Blaha is currently a consultant with the Texas Deafblind Project with the TSBVI Outreach program. Over a three year span, the five teachers participated in training on topics such as assessment, communication for deafblind (DB) students, strategies and issues related to behavior, and sensory accommodations for the IEP.  As a group, these mentors in training made inroads into the field of deafblindness by developing and reviewing materials specific to students with deafblindness.

One of the documents developed by the mentor pilot participants and the Texas Deafblind Project was the “Roles and Responsibilities of the Itinerant Teacher of Deafblindness.” This document outlined eight points specific to the job of the itinerant teacher of students with deafblindness (TDB) and was used to determine training topics for the TDB Pilot Program. Further refinement, discussion, and field trials of the “Roles” document was included in the TDB Pilot with later drafts being developed to include self-contained models.

Partnership with local districts to address the challenge

In 2010, our project began looking again at how we might address this need for a recognized teacher of deafblindness role. Through conversations with two administrators in the Houston area, we discovered commonalities when comparing deafblind student populations and goals for each of their districts. Both administrators were invested in the idea of the best possible programming for their students with deafblindness, and were looking for innovative models to train staff.

In each district there were high numbers of students with deafblindness, which allowed for the identification of an area of need within the district. Training topics were selected through a combination of needs assessments and pre-established roles of the TDB. This ability to channel our efforts was vital as it allowed administrators to designate and assign staff time dedicated to deafblind student caseloads. We then worked with administrators to select personnel based on the staff’s own histories of interest and dedication to working with students with deafblindness. Out of this mutual desire to explore and define this specific role, the “Teacher of Deafblind” pilot was born.

Teachers in the districts identified as TDB’s for the pilot, had either (or both) endorsement in auditory impairment or visual impairment. Complementary to the TDBs, teams were formed around them that included either a TVI or TDHH (depending on the TDB’s background – TDHH or TVI), and orientation and mobility specialists (O & M's). Other team members were included in the training sessions as appropriate.

In addition to the two districts in the Houston area, the Texas School for the Blind and Visually Impaired (TSBVI), also participated in the pilot. The deafblind student population at TSBVI typically fluctuates between 15-20 students annually. The role of the TDB is different than that of most local districts, with self-contained, deafblind specific classrooms, low teacher to student ratios, and residential programming. It was felt that TSBVI’s “center-based” model would be complementary to the local district model and could function as a resource of practice for other pilot participants.

From June 2011 through May 2013, seven TDB's and their administrators met with our project staff to define the unique skills and practices for serving students who are deafblind.  Our model for training was made up of a series of seven training workshops. The workshops were then immediately followed by direct on-to-one consultations between the TDBs, Regional Service Center 4 consultants, and Outreach staff. The follow-up consultations were meant as a way to more directly apply the ideas and concepts of our training sessions to the TDB’s deafblind student caseload.  During our workshop meetings, we often split the administrators into a separate group in order to focus on larger systems change topics.

Conclusion

Stay tuned for part II of this article in the Spring & Summer issue of Texas SenseAbilities in which we describe how the Teacher of Deafblind pilot was expanded to include a new cohort of teachers to help test the model. Information about the technical assistance provided, student, TDB, and systems outcomes will be included, along with further thoughts on how TSBVI’s Deafblind Project Outreach continued development of the Teacher of the Deafblind Pilot Program.

References

Blaha, R., Cooper, H, Irby, P., Montgomery, C., & Parker, A. (2009). Teachers of students with deafblindness: Professionalizing the field. Council for Exceptional Children: D.V.I. Quarterly, (54) 3, 49-51.

Collins, M. (1993). Educational services: Presentation. Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind. (203-219). Teaching Research Publications. National Consortium on Deaf-Blindness [NCDB]. (2012). Recommendations for improving intervener services. Retrieved from http://interveners.nationaldb.org

Schalock, M.D. and Bull, R. (2013). The 2012 National Child Count of Children and Youth who are Deaf-Blind. Monmouth, OR: National Consortium on Deaf-Blindness, Teaching Research Institute, Western Oregon University.

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A Publication about Visual Impairments and Deafblindness for Families and Professionals
Fall / Winter 2015

 

By: Chrissy Cowan, Mentor Coordinator, Texas School for the Blind and Visually Impaired Outreach

Abstract/Editor's Note: The author discusses factors that challenge and strategies that support students with low vision in the school environment.

Keywords: vision impairment, optical devices, lighting modifications

 

As you work with students with low vision, there are general adjustments that can be made to classroom environments that will enhance visual functioning. The following should be considered for each individual student, based on information from a functional vision evaluation.

Consider the Etiology

Familiarize yourself with the characteristics of the most predominant visual conditions resulting in low vision and their effects, such as retinitis pigmentosa, ocular albinism, retinopathy of prematurity, optic nerve hypoplasia, cortical visual impairment, cataracts, coloboma, nystagmus, central scotoma, glaucoma (this list is not complete). A current (October 2015) web resource for this is http://www.svrc.vic.edu.au/AV.shtml “Visual Impairment”. For each etiology, look for such things as:

  • Effects of Light: cataracts cause light to be scattered over the retina meaning that bright light and glare will usually cause problems for the student, whereas the student with retinitis pigmentosa (RP) will require high illumination. Glare for some would be disastrous. Overhead lighting might be too low/high, depending on the etiology. Illuminated screens (any type of lighted display) would be difficult for some, necessary for others.
  • Field Deficits: students with Stargardt’s Disease can have a central acuity loss, making staying on a line of print difficult without specific training. Students with retinitis pigmentosa tend to lose the peripheral field, thus making large print and/or enlarged maps/charts/graphs/photos difficult to scan.
  • Eye Motor: students with nystagmus tend to have problems shifting gaze from one target to another (typical of copying assignments).

Posture

A work surface and/or computer work station that is poorly arranged in regards to lighting would reduce visual efficiency. Whereas marketed reading stands straighten the student’s posture and elevate the reading material, students typically need to write on the same (slanted) surface. Look on occupational therapy websites, such as http://www.therapro.com/, for a writing stand that does not have the ridge at the bottom which makes writing uncomfortable. Or, use a 3 inch 3-ring binder turned sideways to slant work at an angle. 

Organization

It takes the student with low vision longer to find things. Students need to access their materials quickly, so storing for quick retrieval is necessary. Consider a small, stick-on battery operated closet light that you press for inside desks and other darker spaces. Backpacks will need folders and other organizational containers to keep papers organized, and smaller objects in desks should have dedicated containers. The TVI will need to check and reinforce that an established system is used consistently.

Lighting

  • Work Surfaces: with some eye conditions, a lamp might be necessary to put light precisely where it is needed. If an outlet is nearby, the APH lamp is wonderful. Another option is a battery powered OttLight that can be moved from room to room. When positioning the light, make sure the student’s head or hand does not occlude the light, or that the light is shining on the student’s face. Students with albinism or cataracts might have difficulty with too much ambient light and/or glare, which can cause headaches and have a “wash-out” effect on certain materials. Tinted lenses might be beneficial for some, or a light blue filter placed over the reading surface could change the contrast (watch for glare off of shiny surfaces). Avoid seating that is directly under harsh overhead lighting or near a large window.
  • Overhead Projector Screens and Interactive White Boards: when the target surface is lighted or bright, students with lighting issues may have difficulties. The classroom lighting can be adjusted to accommodate, or in extreme cases, the student may need to have a desk (print) copy if significant copy work is required. There are apps available that connect the student’s tablet with the teacher’s computer or the interactive white board that would provide a clearer copy for the student.

Writing Tools and Materials

Provide adapted paper and writing tools, and adjust lighting and positioning of materials (see writing slant board above) if needed. Examples of writing tools include drafting pencils (or #1 soft lead, available in art/craft stores) and fine point felt tip pens, such as a Flare® pen. Students may perform better with bold line paper, or commercially available wide ruled notebook paper with darker lines (compare these at the grocery store—some are darker than others). Gradually move toward fewer adaptations as the student becomes more proficient.

Optical Devices

If the student has been seen by a low vision specialist, start by making sure the prescribed optical devices are on hand and the student has learned how to use them correctly. Devices that tend to be handed to students by well-intentioned people should be avoided (for example: full page magnifier, bar magnifier). Electronic near devices are best used for “spot” viewing, and will slow the student down when reading longer passages. If a video magnifier is in the room, find out if it is being used consistently. If it is not (perhaps due to portability, placement, too much enlargement) consider retraining the student on a handheld or stand magnifier. There are now products available from APH and Region 4 Education Service Center, designed for teaching optical device use. Refer to Looking to Learn: Promoting Literacy for Students with Low Vision, D’Andrea and Farrenkopf, Eds., AFB Press. 

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