FamilyConnect: A Parent's Voice

Track This Blog By E-mail

BrailleBlaster Question and Answer: Braille Software for Everyone

Editor’s Note: Parents, would you like to create braille at home for your child? Now you can using the American Printing House for the Blind's (APH) BrailleBlaster™ software. All you need is access to an embosser or a refreshable braille display, and you can provide materials in braille for your visually impaired child. We've partnered with APH to answer your questions about this new, free software. Read today's post, share your questions and comments, and tune in on Wednesday, January 17th, as we answer your questions about this helpful resource.

boy sitting on the couch with his father reading braille

Home Is Where the Braille Is: BrailleBlaster™ Software Is for Everyone

By the American Printing House for the Blind

Software for transcribing braille has been available for many years, but due to cost, it has been out of reach for most home users. The American Printing House for the Blind (APH) is changing that by offering the most powerful transcription software available free-of-charge! Originally designed for braille transcribers, BrailleBlaster™ can be downloaded and used by everyone, including parents, teachers, and students. Download at www.brailleblaster.org.

Special Question and Answer Event on January 17th

More about BrailleBlaster in a moment; we first want to invite you to an APH/AFB partner event right here on the FamilyConnect blog. If you have questions about how the BrailleBlaster software can make life easier for you and your child, type them in the comment section below or send them to info@aph.org. Return to the blog next week on Wednesday, January 17th, where we will be answering questions in the comment section starting at 9 a.m. EST.

You Can Create High-Quality Braille at Home

What would you braille for your child? Reminder notes, to-do lists, homework assignments, stories? Transcribe these and more into braille using the BrailleBlaster software. As a public service, APH is making its advanced transcribing software available free of charge. Although it is powerful, creating basic braille documents in BrailleBlaster is easy and does not require an in-depth knowledge of braille.

After you download and install the software on your Windows® PC or Mac®, simply copy and paste text from any document into BrailleBlaster. Instantly, excellent quality simulated braille will appear on your screen. This braille can then be edited for formatting in a similar way you edit text in a word processor. For example, to center a heading, put your cursor in front of the words you want to be centered, go to the toolbar, click on the headings button, select center, and the heading will automatically center.

Have an older student? BrailleBlaster is fully accessible and can be used by students to create their own braille!

Getting Braille Into Your Child's Hands

Now that you've created a braille document, there are two ways to get it into the hands of your braille reader: using a braille embosser or using a refreshable braille display.

If you have a braille embosser, you can create hard copy braille by sending your braille-ready file (.brf) from BrailleBlaster to the embosser.

If your child uses a refreshable braille display, you can save the file as a braille-ready file and e-mail it to them.

Frequently Asked Questions About BrailleBlaster

Have questions about using BrailleBlaster at home or at school? Find our FAQs here. You can also e-mail questions to APH at info@aph.org or ask your questions below in the comment section.

Gaining Access to Braille Technology

Braille Embossers: Although prices have decreased, the cost of braille embossers remains high. Fortunately, there are now more options than ever! Here is a list of possible resources for locating or purchasing an embosser. The list includes local places, such as libraries, that may have an embosser, a list of lower-cost embossers, and ideas on how to raise funds for buying assistive technology.

Refreshable Braille Displays: There are many good options for refreshable braille displays. One device is APH's upcoming Orbit Reader 20™, which has a significant price breakthrough.

How Will You Use BrailleBlaster?

We know BrailleBlaster will be useful in the home and in the school. It's free, so you can download it and experiment all you like on as many devices as you like. Let us know how you use BrailleBlaster; we're sure users are going to find more uses for it than we have imagined!

And remember, feel free to send your questions to info@aph.org and mark your calendar for our Q&A event next week, Wednesday, January 17th!


Topics:
Books
Education
Low Vision
Online Tools
Planning for the Future
Reading

How Does a Visually Impaired Child or Teen Travel in the Cold, Snow, and Ice?

I can hear it now—Frozen’s beloved Anna grasping her stiff, emerald dress and murmuring, "cold, cold, cold, cold, cold" as she tiptoes through the snow. Then there are the famous Dalmatians trudging through knee-deep snow, "Mama, my ears are cold and my nose is cold." Disney does a fine job of depicting the distress of traveling in wintry weather when unprepared. So, how do we elude those scenarios with our children who are blind or visually impaired? How does one prepare for winter weather orientation and mobility?

parent and two children playing in the snow

Optimal Winter Gear

If your child will be traveling in cold weather, snow, and/or ice, quality, winter gear is a top priority. Read on to learn the most appropriate cold-weather gear.

  • Want to know the ideal winter hat for a traveler who is blind or visually impaired? A beanie-it can be folded above ears, so as to not impede auditory clues.
  • Want to know the ideal glove for a traveler who is blind or visually impaired? Knit mittens or mittens you've adapted to tube shapes—they allow for optimal feedback while providing warmth.
  • Want to know the ideal shoe for a traveler who is blind or visually impaired? Winter boots with maximum traction or warm boots with YakTrax—they minimize slipping on icy surfaces.
  • Want to know how to minimize glare? Good sunglasses (likely amber tinted lenses will be recommended) are a must, and a visor will provide additional protection.
  • Want to know the best mobility cane for freezing conditions? A non-collapsible cane—your child won’t have to worry about freezing joints, and it will hold up well if it is leaned on in icy conditions.
  • Want to know the best cane tip for snow conditions? There’s no easy answer here! The cane tip of choice will depend on the technique your child is using. If your child is poking snow which has been iced-over, a thin tip is best; if your child is gliding over soft snow, a broad tip is best.

Winter Weather Mobility Techniques

Guide dog in the snow standing with handler

Now let’s talk mobility techniques, skills, and strategies used in the snow and ice:

  • Your child will learn a light cane touch for fluffy snow and a heavier touch for icy conditions. Additionally, your child will learn to poke the snow with the cane to gauge its depth and consistency.
  • Your child will learn to choose a route that has been recently plowed (when possible).
  • Your child will learn to ask for assistance to navigate around icy terrain.
  • Your child will learn to call for a taxi or call a friend if conditions worsen, and it is no longer safe to travel.
  • Your child will learn to leave the house with ample time when weather conditions are poor.
  • Your child will learn to utilize a GPS, a particularly helpful tool when landmarks are unrecognizable.

Alright experts, do you have additional mobility tips and tricks for the snow and ice? We would sure appreciate your suggestions!

Additional Resources

A Mother's Advice on Community Orientation and Mobility Skills

Orientation and Mobility Questions and Answers

Mobility in the Snow for People Who Are Visually Impaired: The Art of Travel on Hidden Landscape


Topics:
Education
Getting Around
Independence
Low Vision
Orientation and Mobility
Planning for the Future
Social Life and Recreation
Transition

The Indelible Impact of Louis Braille

miniature portrait of Louis Braille

When I decided to go back to school to become a teacher of students with visual impairments, I shared my decision with a friend and teacher’s assistant in special education for over 21 years. While her class is not specifically for students with visual impairments, she has always made a point to read the story of Louis Braille to her students and to use it as an example to discuss the important life lessons it presents. "The life story of Louis Braille is universal," she said. "It has a lesson for all of us, sighted or visually impaired."

The Life Lessons of Louis Braille

Her reasons were simple, and she walked me through them: Louis Braille was a curious kid, like all kids; his story gives the kids an example of how to accept ourselves as we are, use our healthy brains, bodies, and talents to their best outcome; his story teaches kids how to leave their mark in the world. "While Louis Braille was an exceptional human being," she said, "I believe all children have the potential to take that story, find their personal strengths, and create something great for the world around them in their lifetime. That’s why I tell the story of Louis Braille."

The Impact of Louis Braille

Each year, many take pride in celebrating the life and work of Louis Braille around his birthday on January 4th. We look to the way Louis Braille broke through the alleged barriers of visual impairment by using his intellect, his creative instinct, and his relentless determination to invent, design, and innovate until education for people who are visually impaired was improved.

Although the original written braille code has evolved and undergone several revisions since Louis Braille’s first published version, the principle of this code and its logical sequence has remained firm. In the original braille code, Nemeth, contracted and uncontracted braille, and even in braille musical notation, Louis Braille put an accessible, sensible way to read and write into our fingertips. Most importantly, braille paves the way for an active future with broad opportunities. Louis Braille was a visionary and a change agent whose work is still moving mountains centuries later.

The Success of the Braille Code

The great success of Louis Braille’s written and musical braille code system is the simplicity and logic upon which it was founded. Rules and patterns are strategic; learning the code, while it can take time and practice, eventually becomes intuitive if you put in the time to learn and follow the rules. The braille literary code and braille music system have their own rhythm of sorts, so it makes sense that music was a stronghold in the life of Louis Braille from the time he was very young.

Just like he learned language and transposed it into literary braille code, Louis Braille learned the way music functions—the theory and scheme of musical notation and composition—and he created a system with which other visually impaired musicians could read and write music as their sighted peers. Louis Braille was an accomplished cellist and organist and taught many students to read and write music. His logical system of modified six-dot cells to represent the various tones of the scale and the notation on the musical page.

The Beneficiaries of the Braille Code

For organizations and academic institutions around the world serving our visually impaired brothers and sisters, Louis Braille’s impacts on academic, musical, and social fronts are indelible. He saw clarity where centuries of civilizations saw barriers and impossibilities. We are endlessly improving our teaching methods and finding ways to fund the research and engineering of new accessible and refreshable braille display technologies.

As we continue to raise disability awareness and implement universal design in public spaces, the presence of braille signs, symbols, and important landmarks continues to expand. Members in the community don’t need to know the individuals benefiting from the braille in the apartment elevator, on the subway ticket machine, or in the doctor's office lobby; exposure to braille throughout our daily routine reminds us what inclusion means. Through his six-dot system, Louis Braille has eternalized the value of inclusion for blind and visually impaired men, women, and children.

Louis Braille is not just a hero for braille readers. As my friend has been doing with her students and the presence of braille code in public places has done for centuries, we can all spread the key lesson of inclusion in school, work, and in life through the genius invention of Louis Braille.

Additional Resources


Topics:
Braille
Education
Employment
Independence
Low Vision
News from FamilyConnect
Planning for the Future
Self-Advocacy

To Use Person-First Language or Intentionally Not Use Person-First Language, That Is the Question

"When speaking or writing about a person who is blind or visually impaired, it’s important to use person-first language: ‘the boy who is blind’ is preferred over ‘the blind boy’," I distinctly remember learning in my coursework to prepare to become a teacher of students with visual impairments.

Here I am, a decade-and-a-half later, writing for FamilyConnect and making the daily decision, "To use person-first-language or intentionally not use it?"

As you, family members and teachers, talk and write, I know you also wrestle with this question. I wonder if you’ll hear my take on the matter and more importantly, share your take. I want to learn from you.

In most cases, I agree with what I was originally taught; person-first language seems the obvious, respectful choice, as a person is not defined by any one feature and especially not by something he or she doesn’t have. However, I don’t want to have my opinion set in concrete, especially considering I, myself, am not blind or visually impaired. I don’t get the last word here. I want to raise the questions:

  1. What do people who are visually impaired think about person-first language?
  2. Doesn’t it depend on context?

Consensus on Person-First Language

It’s important to understand the preferences of adults and young people who are blind, particularly the one in your or my home, workplace, school, or community, and to be willing to use his or her preference; I say this because there is no consensus on the matter and your family member will have a personal preference.

Your family member may find person-first language most respectful, or he may feel like that of the deaf community, acknowledging a difference or a disability is an identifying feature, one that needn’t be avoided or concealed. In other words, to many individuals, saying "the guy who is blind" instead of "the blind guy" is declaring being blind is something you don’t want to be identified with—such as myself, a redhead, not wanting people to tip-toe around the issue by awkwardly saying "the lady with red hair" instead of "the redhead." Not a great example on my part, but it does make the point that red hair is not something I want to be disassociated from, and well-adjusted folks with visual impairments don’t want to be disassociated from vision loss.

Evaluate the Context

In addition to acknowledging the preference of your family member, I think it’s important to evaluate the context.

  • If you or I are talking to or writing to an individual who has not yet adjusted to blindness, perhaps it’s most important to use person-first language.
  • If you or I are talking or writing in a professional setting, such as at an IEP meeting, perhaps person-first language is the best choice as it reminds the educational staff that your child is first a child.
  • If you or I are identifying an individual we don’t know well, such as "the girl at the picnic table," person-first language may be the best choice as we don’t yet know the girl’s preference.
  • If you or I are talking with teachers, daycare workers, doctors, etc. who are unfamiliar with blindness, perhaps it’s best to use person-first language as the listener may need to be reminded that the individual is more similar to a sighted peer than different.

FamilyConnect’s Take on the Matter

FamilyConnect generally uses people-first language because we are talking to a large audience, many of which could use the reminder that individuals who are blind are first individuals, more similar to sighted peers than different.

There are intentional scenarios when we write "visually impaired children," "blind child," etc. because we want our articles and blogs to appear in search engines, such as Google, when a user types "blind child," and at times, it’s awkward to write "the child who is blind" and "daughter/son who is blind or visually impaired" a handful of times in a paragraph. The wording is bulky!

What Is Your Take?

That is our take; we’d love to have you join the discussion. Hearing a variety of opinions and preferences educates us all.

Resources on Blindness

Learning About Blindness

What Do You Want the World to Know About Blindness?

Questions and Answers Regarding Your Child’s Low Vision


Topics:
Low Vision
Personal Reflections
Self-Advocacy

The Green Button: A Lesson in Hospital Advocacy Learned from My Sister Who Is Blind, Mayra's Story

Leer este artículo en español

In one week, Mayra was admitted to the intensive care unit twice. During her first stay, she made use of an intravenous line and a portable heart monitor, a visible and audible reminder of the seriousness of her medical diagnosis. The second time she was sent to ICU two additional pieces of medical equipment were used: a feeding tube and a pain pump. The pain pump would dispense medication continuously to keep the pain under control. If the pain increased, Mayra could push the button that had been attached to the pump for additional medication to be dispensed. The instructions were both easy to understand and easy to follow. The plan initially worked okay; the pain was controlled for a little over 24 hours. During that time, Mayra pushed the button only a couple of times for additional medication.

A Sudden Drop in Blood Pressure

Things changed suddenly when the personal care attendant checked Mayra’s vital signs. Her blood pressure was very low, and her nurse would have to be notified. The medical team concluded that the reason behind the sudden change in her blood pressure was the continuous medication that had been keeping the pain under control.

The instructions for Mayra changed; she would have to press the button on the pump whenever it turned green, approximately every 20 minutes, in order to dispense medication. A blind patient was being instructed to push the button on her pain pump whenever it turned green. I asked the doctor if he was sure this would work well for Mayra. I was trying to remind him in a none obtrusive manner that my sister was blind, and she would have no way of knowing when the button was green.

Frustration and Solution

I was frustrated with the lack of regard for Mayra’s blindness and medical condition. A few weeks prior to Mayra’s hospitalization I read an article on the Braille Works website, written by the CEO of the entity, to inform the readers about the lack of accessible documents in the hospital. He, like me, had been frustrated with the nurse who had told him that he could not sign the consent forms because he had not been able to read them independently. The nature of his frustration and mine was slightly different. But if he had been able to find a way around the problem, I felt compelled to do the same. Fortunately for Mayra, our parents and I rotated and one of us was with her at all times. When one of our parents was with her, they would tell her when the button was green. If her nurse happened to be in the room when the button turned green, she would let her know that she could push it. When I was with her, I would keep track of time with my phone as I am also blind. I will admit that I missed a few times, but all in all, we made it successfully, and I am glad.

Hospital Accommodations

As parents of blind/visually impaired children, you have gotten a head start in dealing with institutions, policies, and procedures. Strange as it may seem, the hospital in a way resembles a school district. Perhaps, the biggest difference is that instead of dealing with teachers, diagnosticians, and school administrators, you would be dealing with doctors, nurses, and patient advocates. Therefore, I am confident that some of the things I will suggest below are things that you have already practiced with your child’s school district.

  1. Be proactive when your child is healthy. Contact the patient relations department of your local children’s hospital to inquire about the policies and procedures they have in place to accommodate blind/visually impaired children. You will have an idea of what you can expect.

  2. Meet with the hospital floor manager and ask him/her to place a note on the door to ask everyone to introduce him/herself to your child as soon as they enter the room, to talk directly to the patient, and to verbally describe procedures and directions, demonstrating or modeling tasks or use of equipment when possible.

  3. Ask questions and take notes when talking with those in charge of your child’s care plan, just like you would at an educational planning meeting. As parents, you have the right to ask questions, and the doctors and staff have the professional responsibility to answer. Remember that when it comes to the well-being of your child, no question is too silly or stupid.

  4. Work with the medical team to label medications.

  5. Orient the child or teenager to the room and hospital floor.

Additional Resources

5 Tips for Medically Treating a Child Who Is Blind

Working with the Medical Professionals When Your Child Is Blind or Visually Impaired

ADA Checklist: Health Care Facilities and Service Providers


El botón verde: Una lección en apoyo hospitalario que aprendí de mi hermana que es ciega, la historia de Mayra

En una semana, Mayra fue ingresada a la unidad de terapia intensiva (UTI) dos veces. En su primera internación, fue conectada a un suero y un monitor cardíaco portátil como recordatorio visible y audible de la seriedad de su diagnóstico médico. La segunda vez que fue ingresada a la UTI, fue conectada a dos dispositivos médicos adicionales: una sonda nasogástrica para alimentarla y una bomba para controlar el dolor. La bomba para controlar el dolor dispensaba la medicina de manera continua para mantener el dolor bajo control. Si el dolor aumentaba, Mayra podía oprimir el botón que había sido conectado a la bomba, para recibir medicina adicional. Las instrucciones eran fáciles de entender y fáciles de seguir. Inicialmente, el plan funcionó bien. El dolor se mantuvo bajo control por poco más de 24 horas. Durante este tiempo, Mayra solo tuvo que presionar el botón un par de veces para recibir medicamento adicional.

Una caída repentina de la presión arterial

Las cosas cambiaron súbitamente cuando la asistente de enfermería revisó los signos vitales de Mayra. Su presión arterial había bajado de manera significativa y su enfermero tuvo que ser notificado. El equipo médico concluyó que la razón del cambio repentino de la presión arterial fue el medicamento continuo que había mantenido el dolor bajo control.

Las instrucciones cambiaron para Mayra. Ahora tendría que oprimir el botón de la bomba cuando estuviera verde, aproximadamente cada veinte minutos, para dispensar el medicamento. Se le estaba indicando a una paciente ciega que oprimiera el botón de la bomba cuando estuviera verde. Le pregunté al médico si estaba seguro que esto funcionaría bien para Mayra. Estaba tratando de recordarle de manera discreta que mi hermana era ciega y que no era posible para ella saber cuándo el botón estaba verde.

Frustración y solución

Me sentía frustrada por la falta de consideración para con la ceguera y condición médica de Mayra. Unas semanas antes de su hospitalización, yo había leído un artículo publicado en la página Web de Braille Works. El artículo había sido escrito por el presidente de la entidad, para informar a los lectores sobre la falta de documentos accesibles en formato alternativo para personas ciegas en los hospitales. Él, al igual que yo, se había sentido frustrado con la enfermera que le había dicho que él no podría firmar los documentos para autorizar su tratamiento médico porque no los había leído de forma autónoma. La naturaleza de su frustración y la mía, era ciertamente algo diferente. Pero, si él había podido encontrar una solución, yo me sentía compelida a hacer lo mismo. Afortunadamente para Mayra, mis padres y yo nos alternábamos y uno de nosotros estaba con ella en todo momento. Cuando uno de nuestros padres estaba con ella, le dejaban saber cuándo el botón estaba verde. Si su enfermera de casualidad estaba en el cuarto cuando el botón se ponía verde, ella le dejaba saber que podía oprimirlo. Cuando yo estaba con ella, controlaba el tiempo con mi teléfono, ya que yo también soy ciega. Debo admitir que más de una vez perdí noción del tiempo, pero, dentro de lo que cabe, nos fue muy bien y lo logramos.

Adaptaciones razonables en el hospital

Como padre de niños ciegos o con discapacidad visual, usted ya tiene experiencia en lidiar con instituciones, políticas y procedimientos. Por extraño que parezca, en cierta forma el hospital es similar a los distritos escolares. La mayor diferencia es que, en lugar de tratar con maestros, psicopedagogos y administradores escolares, ustedes tratarán con médicos, enfermeras y trabajadores sociales. Por lo tanto, estoy segura de que las cosas que sugiero a continuación son cosas que ustedes ya han puesto en práctica en el distrito escolar de sus hijos.

  1. Sea proactivo cuando su hijo no esté enfermo. Póngase en contacto con el Departamento de Atención al Paciente del hospital infantil más cercano, para preguntar sobre sus políticas y procedimientos en cuanto a las adaptaciones razonables para niños ciegos o con discapacidad visual. De esta forma, usted tendrá una mejor idea de lo que puede esperar.

  2. Hable con el (la) director(a) de piso y pídale que ponga una nota en la puerta de la habitación solicitando a todos que se presenten a su hijo tan pronto entren a la habitación, que hablen directamente con el paciente y que describan verbalmente todos los procedimientos e instrucciones y, siempre que sea posible, que demuestren o modelen las tareas o el uso de los equipos.

  3. Haga preguntas y tome notas cuando hable con los encargados del plan médico de su hijo, tal como lo haría en una reunión de planificación educativa. Como padre, usted tiene el derecho de hacer preguntas, y los médicos y el personal tienen la responsabilidad profesional de contestar. Recuerde que cuando se trata del bienestar de su hijo, no hay preguntas tontas o estúpidas.

  4. Trabaje con el equipo médico para etiquetar los medicamentos.

  5. Oriente al niño o adolescente a la habitación o piso del hospital.

Recursos adicionales

Cómo trabajar con profesionales mé dicos cuando su hijo es ciego


Topics:
Low Vision
Personal Reflections