My personal experience living life silently

For the past four days, I have been completely silent - not even a peep. Trust me it is not by choice. I have laryngitis. By the order of the doctor, I am not allowed to talk or strain my voice. This is funny because even if I wanted to, nothing comes out! I am very lucky because unlike the thousands of individuals that end up with laryngitis, I have the tools to help me still communicate with others. With that, you would think that I could carry on with life with little interruption.

My experience has been very humbling and frustrating. As an AT person, I encounter hundreds of people that are not able to communicate using their voice for various reasons. My job is to help them communicate or access communication devices. Now as the person that needs a communication system, I am seeing the world in a completely new way. So many opportunities are lost because one cannot communicate effectively. Trying to find alternative ways to have individuals communicate with you is time consuming.

In the past four days, I have found that alternative communication makes my communication partners uncomfortable. From my side of the conversation, I found that people do not feel you are an equal partner in the communication. The conversations are far shorter. Even when I try to expand on what I am saying, I am told, “don’t worry I get it”. GRRRR, I do not care that you can get it, I was not finished talking. People look down at my device rather than my face. I even programmed one of the buttons to say, “Look at me not my device.” It seems people prefer to look at a computer screen rather than a person’s eyes.

I tried to use my communication device to answer a phone call related to an account issue. I preprogrammed a button explaining that I have no voice and that I am using a communication device as my voice. The representative said they could not talk to me because they were not sure whom they were talking to. I answered all the security questions but they still would not assist me because they were not sure whom they were talking with. I emailed the company to explain the situation their email back to me was: For further assistance with your account, please contact us at 866-XXX-XXXX between Sunday to Thursday 8 a.m. - 11 p.m. ET Friday to Saturday 8 a.m. - 5 p.m. ET, so that we may discuss what options are available on your account.” Seriously, I just wrote asking for an alternative way to communicate with you - your solution is having me call to talk to a representative. Did we not just establish that phone communication would not work? Therefore, around and around we go. They want me to give permission to someone else to talk for me. I refuse to do this since I have a way of communicating.

Even at the doctor’s office, I found the staff to be inconsiderate and impatient. The nurse was annoyed that she had to wait for my response. She said that she does not have all day. I was not asking you for the whole day - but a minute to type what I want to say would be nice. Just to annoy her a little more I typed slower. :0)
As a patient, I am paying for your time. I deserve to be treated with respect. I am silent because of a temporary condition, so when I get my voice back I will have a lovely conversation about I felt when I was trying to be an active communication partner. My doctor will get a copy of the communication bill of rights. I may send it to every company that I had the displeasure of working with during these five days.

Being non-verbal in a verbal world is scary and frustrating. I have been in the field of special needs for 24 years. I have been empathetic to my students, consumers and friends’ needs. However, you can never understand what an individual deals with until you walk in their shoes. I can say that I still do not completely understand because I can communicate in ways that others may not. I have access to manual writing; I can play charades, use gestures and facial expressions. I have the ability to sign which for the most part is not functional unless you have a communication partner that understands sign language. I have the ability to text message, write emails and well as instant message with individuals that have the tools. Still with all the ways that I can communicate, I am left feeling like an inconvenience.

The scary part of not being able to communicate verbally is that if something happens I have no way of calling for assistance. The other day my father fell outside. I heard a big bang and ran to check what it was. My father was lying on the ground and there was blood coming out of his hand and head. I could not ask the questions that I needed to know if he was OK. I could not tell him not to stand up. I do not typically panic when there is an injury. However, at that moment I was panicked because I had no way to communicate with him. My father is OK. Just a bad scrape on his head and a minor cut on his hand. Being on blood thinners caused much more blood than a typical. However, if I needed to call for assistance the best I would have been able to do is call 911 – push buttons on the phone – hang up, call back, and hang up again. The police department would have responded to see what is going on. I am honestly not thrilled with that as a solution it causes way too much panic and it is not an appropriate solution.

As I sit here typing this, I know I am blessed. Once I had a chance to calm down and think, I realized I could have texted my cousin who is the Chief of the Fire Department in the town and one of my friends is the police dispatcher so I could have gotten help if I was able to think in that moment of panic. However, when you are used to communicating in one method and you do not have that method you realize that you are vulnerable.

There is humor in me not being able to talk. My family says they have had a vacation from my chatter. However, they are already losing their patience with me. They are tired of reading notes, asking yes/no questions and playing charades. It is interesting to see that my family now thinks they need to talk louder and slower because I cannot speak. Just to confirm I have laryngitis. My hearing is still great. The ear tubes are fine. The vocal pipes are under maintenance.

I am finding that being non-verbal is extremely tiring. You have to plan the conversation out. You have to make sure your partner understands that this will be a slow process and you pray that they don’t deviate from your pre-programmed buttons because otherwise you have to type things out which will take even more time. For example, I wanted a vanilla milk shake. You would think that is easy request. Seriously, it took me 10 minutes to order a milk shake. Do you want that thick like a malt or thinner? Do you want a small, medium, large or extra large size? Do you want a drizzle of this flavoring or coloring. I am all for giving choices but all I want is a milk shake. I felt like I was in a Dr. Seuss book.

So the saga continues. I know I am having a difficult time with being non-verbal. The verbal world does not slow down just because I am slower in my communication method. I am stressed because I cannot complete the things that I should be able to do. I am irritated much quicker when people do not understand what I am saying even when I feel I was very clear in my expression. I feel isolated in ways. My fast wit and dry humor just does not read as well as it would be received verbally.

This experience has left me with many things to consider. It has renewed my passion to make sure that individuals have the right to communicate and are given respect. It has shown me that just because you have a voice output device does not mean communicating with others is less stressful. I actually found it more stressful because of the non-verbal communication or verbal communication given by my communication partner. It has helped me to experience the many ways my friends, consumers and students struggle with when they are trying to communicate with the verbal world. I have learned that language is fleeting. I have learned that although it is fleeting, the emotion is left there hanging.

I thought I had empathy prior to this experience but this experience has shown me that one’s feeling of empathy doesn’t even come close to understanding the frustration, sadness and the loss of self one feels when you cannot verbally communicate the way you used to. I know I will get my voice back once the laryngitis is gone. However, this experience will live with me forever.

TLC Spotlight - Lightwriter SL40

The Lightwriter SL40

The Lightwriter SL40 is a small, powerful communication device for those needing voice output.   The SL40 quickly and clearly converts text to high quality Acapela speech, sends and receives text messages (SMS), stores notes and contacts, acts as a remote control and more, all in a lightweight and durable device.

The Lightwriter has dual display In addition to the user display, there is a high-resolution, large print, forward facing display allows listeners to read messages from the individual typing. The readable display allows communication in noisy environments and when silence is important. 

The Lightwriter SL40 also comes with word prediction,Word prediction makes communication faster and more efficient.

Another great feture is the built in environmental control .  The built in infrared of the Lightwriter® SL40 can be programmed to control appliances, toys and some home control systems.

The keyboard on the SL40 has adaptable keyboard sensitivity. It is equipped with three changeable key guards of different depths, which increases ease of use and typing accuracy. The layout can easily be changed to different QWERTY and ABC formats.


What do you think? Do you want to TRY IT before you BUY IT? Then join our Technology Lending Center. Click here to join today!

10 Tips for OneNote Organization

Do you use Microsoft OneNote? It is a powerful tool to assist with organization. Never heard of OneNote? According to the Microsoft Website

“Many of us carry a notebook or notepad around to take notes for business, school, or personal projects. But can you easily find — and decipher — the info you need? Is it convenient to share your notes with others? Take control with Microsoft Office OneNote 2007, the easy-to-use note-taking and information-management program where you can capture ideas and information in electronic form. Insert files or Web content in full-color, searchable format or as icons that you can click to access. Watch this demo to see how simple it is to gather, format, organize, and share information. And then say goodbye to your notepad!”

Kathy Jacobs posted a very informative list of 10 tips for OneNote organization to the Microsoft MVP (Most Valuable Professional) Award Program Blog. Here is her list of the 10 tips.

1. Create the notebooks you need as well as the ones you think you might need.
2. Create your notebooks where you are most likely to need them.
3. Set your default notebook location in OneNote to the network folder where you store your notebooks.
4. Organize your notes the way you think.
5. Move your note pages to where they belong.
6. Tag your notes intelligently.
7. Organize your tags.
8. Remember that even if you can't find a note, OneNote can.
9. Title your pages for future reference.
10. Link your notes. To each other. To other documents. To the web.

Do you want to read the entire blog post? Check it out here

Do you have some other helpful tips for using OneNote for organization? Leave a comment below and share your expertise.

Web 2.0 Wednesday! Universal Subtitles

With on line video clips playing such an important role in education, work and home - we need to make the best effort to ensure that our videos are accessible to all users. Not all on-line videos are captioned. Well..try Universal Subtitles and make all your videos accessible!

There is no software to download. Simply type in the URL for the video and then follow the steps to caption / subtitle the clip. Once you are finished, viewers can select to show the captions and even have the ability to see different languages!



Want to see an example? Check out this subtitled version of the video clip for the Dave Matthews Band song "Ants Marching" from the company website.

A Place to Read, Write, Connect

Looking for an exciting way to get kids (over 13) interested in books and writing?  The brand spankin’ new website Figment launched this week and it offers young writers and readers a community where they can express themselves, share ideas and discover what’s new on the literary front.

Figment features exclusive excerpts from new books, interviews with authors, contests and blogs (one from the Book Muncher).  The site, which was founded by a staff writer and former managing editor from The New Yorker, has a very youthful feel to it. The FAQ and Guidelines for participation are written in a way most teens would understand.

Check it out. It’s free to join.

TLC Spotlight - Go Talk Boards

You don’t have to spend a fortune for a great communication device.

Go Talks...

The Go talk series by Attainment Company comes in many varieties here are a few... 

GoTalk 20+ features 100-message capacity, GoTalk 9+ includes nine minutes of recording memory with a 45 message capacity, GoTalk 4+ includes a total of 4 1/2 minutes of recording time with a 22-message capacity.  The GoTalk Pocket features six message buttons with built-in key-guard and built-in overlay storage. Includes five recording levels with 10 seconds of recording time on all 30 messages.  

The GoTalk offers multiple levels for recorded messages. This means that you can easily change communication boards. Communication boards can be created for various situations.  Each level can be locked to prevent accidental erasure. Recording and re-recording speech is very simple. The GoTalk is an ideal tool for Augmentative and Alternative Communication (AAC). 

 

 

check out the video...

What do you think? Do you want to TRY IT before you BUY IT? Then join our Technology Lending Center. Click here to join today!

Web 2.0 Wednesday! Diagramo

Do you want an easy way to create and share diagrams via the web? Try Diagramo.

Some of the features described on the website include:

Rich HTML 5 interface (no flash)
Diagramo allows you to easily create, edit and share diagrams providing a similar user experience as regular desktop applications

No software required to view the diagrams
One of the main advatages of our web-based editor is that you can share your works with anyone and they don't need to purchase or install any software

Lifetime availability for your diagrams
You'll have permanent access to all the diagrams and graphs that were created using Diagramo

No browser plugin required
You do not need to install any browser plugin or extension in order to use Diagramo

Wide range of possible uses
You can use Diagramo to create organization charts, diagrams, network architecture diagrams, graphs, landscape designs

Try it out and leave us a comment below.