Category Archives: Assistive Technology

A Letter to My 14-Year-Old Self


Bio:
Chris Windley is a 29-year-old with cerebral palsy who is well-acquainted with the challenges facing children with cerebral palsy. As a child growing up with a disability, he experienced bullying, feelings of isolation and self-doubt. Now a thriving 29-year-old, Chris reflects back on his life with a follow-up letter to his younger self. You can read his first letter here; he wrote it as a 27-year-old to his 10-year-old self.

Dear 14-year-old Chris,
What’s up?  I’ve gone through draft after draft of this letter. It’s been a roller coaster emotionally for the past few years for both of us. Thinking back on who I was, and how I’ve changed since then has provided me with a number of lessons I can finally share with you.

I’m experiencing “tangible” evidence of our growth. You know those plans you’re already making of becoming a somewhat mature, sensible adult? The path you set upon to accomplish this goal is working and right for you. Remember: we are all works in progress. There is always something to learn and more room to grow. You’ll soon find out that there are few pleasures in life more rewarding than being aware of one’s own growth.The clarity and joy gained from this kind of realization are beyond words.

Anyways, you’re finally a teenager! Which even for an able-bodied person is most often a nightmarish gauntlet of highs, lows, doubt, embarrassment, exploration, great achievements, and everything else in between. So here I go again, taking another stab at helping you through this frightening, yet exciting time in your life.

Communication is key.

As you are learning in your English classes, dialog is what truly drives a story forward. Your story is no different. I can’t stress how important it is to communicate. Not only with other people, but yourself. If you don’t understand your needs and how you internalize, process and apply said information, it’ll make it very difficult to effectively communicate with people. Strive to be able to accurately express yourself as short and sweet as possible. You’ll thank me later. It’s also okay if you can’t right now. Sometimes, things just take a while to learn.

Trust your instincts.

It doesn’t make much sense, but there are going to be people that generally want nothing to do with you, or worse: will actively try to cause you to fail. Accept this unfortunate fact of life and move on. Don’t think too badly about any of these people. At the same time, don’t convince yourself that people will not accept you. They will. You’re awesome and in hindsight, there’s a number of people that want to be your friend, they just don’t know how to approach you. It’s as simple as that.  Teenagers are strange creatures. (No offense.)

Reflect often.

I don’t want you to be a cave-dwelling hermit; but explore your feelings and the things you experience. It will help you discover things about yourself that will help you navigate this crazy thing called life. Even better, you will eventually get to the point where you are secure enough with yourself that when a conflict arises, you will be able to think clearly, keep your emotions in check and choose the best course of action to resolve whatever it is.

From time to time, your emotions will get the best of you, and that’s okay. After all, you’re only human. Being aware of yourself and your inner workings will help you through these stressful situations in a much quicker, healthier fashion.Cherish your family.This one is huge. Talk to them more. Tell them how your day has been and share those things you may feel uncomfortable sharing. Regardless of what you think, they really do have your best interests in mind, but they can only go so far without your input. Family doesn’t always mean blood relatives. Some of the closest people in your life are outside of our family, including a sister from another mister.

A poem you write (later) says: “Blood may be thicker than water, but we all need water to survive.” This still rings true to me today. It’s a reminder that while your family is vitally important, you will need to rely on others as well.  No one can do anything alone, including you. Success is not a singular journey. It is a collective effort, whether you realize someone else was involved or not. Besides, what’s the point of success if there is no one to share it with?

Start concentrating on the future now.

No pressure! However, preparedness is our best bet to make something of ourselves and be productive members of society. Continue to do well in school. Believe me: the fun you are having now as a teenager is all good and well, but there are a number of awesome things a good education can afford you as an adult. We all have a myriad of talents, so never underestimate yourself or anyone else for that matter. One of the few regrets I have in my life is not concentrating on them more when I was your age. Change that!

Be open to opportunity and possibilities.

I read stories everyday of people with disabilities defying the odds, doing what they love and living life as fully as the next person. You are no different from any of them. There are some added challenges, but like Dad always tells you, “Those with greater facilities have greater responsibilities.” You have great facilities, and more often than not, you will exceed others’ expectations of you.

There are very few reasons for you to close a door or believe something is not possible.  At the same time, be realistic. You’re old enough now to realize that you do indeed have limitations (everyone does), but do not be afraid to question and test those limits! A large part of life is spent overcoming obstacles. Get ahead of the game by starting now. Practice makes perfect.

Well, I’m going to sign off here for now. I’ll write again sooner than later. Until next time: stay happy, healthy, humble and honest!

Sincerely,
29-year-Old Chris

 

 

Assistive Devices Abound for Helping with Communication for Cerebral Palsy kids

By Lee Vander Loop

For many children with cerebral palsy, communication is a struggle. Some may have a limited ability to learn and understand speech due to cognitive impairment. Others may have difficulty speaking clearly because of poor control over their tongues, lips, and mouths because of motor control issues.

Although children vary in language development, there are certain speech milestones that indicate if a child is on track in this area. Any child not meeting these goals should be tested for speech or hearing problems.

Children with hearing impairments may experience difficulties with speech since they can’t hear to mimic sounds in their environment. A child normally reacts to sounds starting from birth, and begins looking in the direction of sound between 4 and 6 months of age. Any infant who doesn’t seem to react to sound should be screened for hearing problems.

A number of techniques and devices have been developed to help children with severe speech impairments to communicate. Augmented and Alternative Communication (AAC) devices and strategies range from low-tech approaches using pictures, to high-tech systems that use computer software to generate speech.

Although some parents may fear that introducing technology will deter their child’s motivation to attempt speech, research has found that AAC can improve communication skills.

How Does a Parent Choose?

With the mind-boggling amount of information on the internet involving augmentative communication, assistive devices, and brain-computer interface (BCI) technology, how can a parent determine what intervention or technology is appropriate for a child?

The first step is to talk to your child’s pediatrician about what resources may be available locally or in a nearby city. Many large teaching hospitals and rehabilitation hospitals offer evaluation and help with choosing an AAC system that will best suit your child. They may offer an assistive technology clinic. The best of this type of facility will:

  • Offer a team of professionals made up of specialists in AAC, speech pathology, occupational therapy, and physical therapy, who will work directly with AAC technology vendors to provide services to your child.  Importantly, they will work under one roof, not only because this makes it more efficient for you and your child, but also because this will make it more likely they will be communicating effectively with each other.
  • Match and customize any AAC system or device to meet your child’s abilities and needs.
  • Assess your child’s practical options, including computer access and environmental control issues.
  • Evaluate any seating and power mobility issues associated with a communication system. This service often involves a wheelchair and occupational and physical therapy evaluations and recommendations.
  • Provide the proper training on the device for both you and your child. Studies show that simply knowing how to operate the device isn’t enough to ensure improvement in conversation. For this, a child must have direct conversational treatment to ensure she is engaged in conversation on a regular basis. Parents can be trained to initiate and encourage this kind of interaction.

A World of AAC Options

It’s truly amazing what science has achieved in this field in the last decade. Many laboratories are developing brain-computer interface systems that provide communication and control capabilities to people with severe motor disabilities. Brain-computer interfaces can translate brain activity into signals that control external devices and can provide communication and control capabilities to people with severe motor disabilities. For a look at examples of educational tools and games using this technology, visit
NeuroSky.

Speech generating devices known as voice output communication aids (VOCA) are electronic systems that enable people with severe speech impairment to verbally communicate. These systems can be installed onto existing laptops, desktops or PDA systems. One notable user of a speech generating device is Dr. Stephen Hawking, the world’s foremost living theoretical physicist. Hawking, who is unable to speak due multiple severe disabilities, has used a DECtalk DTC01 voice synthesizer for several years and has come to be associated with the unique voice of the device. He is now said to be using NeoSpeech’s VoiceText speech synthesizer

What’s New in the Field Today

There is insurmountable evidence that the quality of life of people with severe motor and speech disabilities is being positively impacted as a result of these amazing new discoveries in the field of assistive technology and alternative/augmentative communication. Here is an overview of some of the newer AAC devices on the market today, according to their websites:

Proloquo is a multilingual speech and communication solution for Mac OS X that provides a full-fledged communication system for people who cannot speak, including speech feedback in any application while typing for children and people with learning disabilities. The system can also serve as a talking word processor; provide an advanced, multilingual speech engine for KeyStrokes on-screen keyboard and SwitchXS switch access.

Proloquo2Go is an Augmentative and Alternative Communication application for iPhone, iPad, and iPod Touch for people who have difficulty speaking. It offers natural-sounding text-to-speech voices, a default vocabulary of more than 7,000 items, and expandability in a convenient, mobile solution. The system also includes natural-sounding Infovox iVox voices for a language of choice.

TouchChat Suite for iPod/iPhone/iPad is a full-featured communication application for iPod/iPad technology. It enables Apple iPod, iPad, and iPhone devices to play a role in providing an alternative voice to individuals who cannot speak.

KeyStrokes is a fully functional advanced virtual on-screen keyboard that allows use of a mouse, trackball, head pointer, or other mouse emulator to type characters into any standard Mac application. KeyStrokes offers word prediction, word completion, next word prediction, and even multi-word prediction in a number of languages.

TouchStrokes is a virtual keyboard that works by drawing a keyboard image on the display and allows you to type characters into any normal application using a mouse, touch screen, graphic tablet, trackball, head pointer, or other mouse emulator.

SwitchXS is a switch-based computer access solution. A downloadable application that provides complete access to Mac OS X and all standard Mac applications for people who can only use one or more switches, it is intended for individuals with very limited limb movement.

LayoutKitchenis an editor for SwitchXS scan panels, KeyStrokes keyboards, and Proloquo speech panels. SwitchXS users can use LayoutKitchen to create their own scan panels specific to their needs to create customized panels.

VisioVoiceis an application that enhances access to Mac OS X for users who are blind and visually impaired.

GhostReader is a multilingual speech solution for Mac OS X that allows individuals to listen to their own documents with natural-sounding voices. Uses include converting documents to audiobooks to listen to on an iPod or iPhone. It also converts text from news sites and e-mails to audiobooks to listen to on iPod or iPhone.

Digit-Eyes enables people without vision to read barcode labels. It is used with an iPhone to scan UPC/EAN codes and then hear the names of more than 7.5 million products. Barcodes can be printed from the Digit-Eyes website on ordinary labels and placed on items. Digit-Eyes barcodes may contain text that VoiceOver reads or that can be used to record audio on a phone that’s played when the label is scanned.

Pictello is a universal application that runs on iPad, iPhone, and iPod Touch to create talking photo albums. Developed for all ages and skill levels, it requires no reading skills to locate and read stories.

Resources:

Closing the Gap is a resource for parents and educators about how to find, compare, and implement assistive technology.

USA TechGuide is a guide to wheelchairs, mobility scooters, and assistive technology.

rehabtool.com offers a line of  products and provides general information and a newsletter.

ClinicalTrials.gov lists ongoing studies relating to BCI and cerebral palsy.

Christmas iPad, Digital Books Open New World of Learning


Last Christmas, one of the presents Connor Meadows unwrapped first was an iPad and within days this 7th grader with cerebral palsy was reading digital books on his own. He didn’t have to worry about the book falling or asking someone to turn the page for him. “The learning process took on a whole new meaning,” said his mom, Casey Meadows. “We cannot download digital books fast enough and he loves to read now!”

Free Online Resources for Disabled Children

In 2012, Connor’s mom learned about a free online library, Bookshare and a portable reading app called Read2Go, for Apple devices (under $20). She began downloading digital accessible books on behalf of her son through an individual membership.

Accessible books enable learners like Connor to more easily follow highlighted words on a computer screen and listen to text read aloud. Readers can use the technology device to navigate through chapters, bookmark pages and select preferences such as background colors, male or female voice and size of fonts.

Bookshare is federally funded through awards made by the U.S. Department of Education, Office of Special Education Programs. The service is free for U.S. public schools and students who qualify with print disabilities. His mom says, “Connor has more freedom to learn anywhere and fewer physical burdens. He also gets his school books on time!”

Digital accessible books can transform the learning experience for students who are blind, have low vision, a severe reading disability or physical disability. The multi-modal (to see and hear) experience allows readers to take in more complex information in middle and high school. “As Connor’s reading skills improved, so did his ability to communicate,” shared Meadows. “His sentences got longer using his Dynavox and head switch.”

Utilizing Digital Books in the Classroom

In the past, Connor depended on his mom or an aide to hold a book steady or turn a page. His reading assignments had to be requested in large print, but that often took weeks – which left him always in catch up mode. Now, he doesn’t rely on others much and reads digital books from a stationary stand on his wheelchair from his iPad. “He can follow the text and has better eye tracking,” adds Meadows.

Last year, Meadows met with her local school to talk about the advantages of digital books and technologies. She shared information about a local Bookshare training program, Accessible Books for Texas (ABT) and encouraged the school to apply for an Organization Membership.

The Texas school ran with the suggestion and worked with an ABT Outreach Coordinator who demonstrated how the library worked. Educators learned how to download eBooks in formats such as DAISY (Digital Accessible Information System) and Braille (BRF) and how text-to-speech (TTS) worked. There are several free reading technologies with a Bookshare membership.

“Digital books and technologies can improve the learning experience for any child – whatever their reading level or disability,” said Meadows. “Some educators think that if a student hears text read aloud, they aren’t learning, they are just listening, but this isn’t the case. When Connor listens to an e-book, he follows along with the highlighted text and understands the story. He also uses the navigation tools to review school reading assignments for reinforcement.” She recently downloaded three novels for Connor’s English class from Bookshare: Lawn Boy, by Gary Paulsen, Fever 1793 by Laurie Halse Anderson, and The Cay, by Theodore Taylor. Now, he doesn’t worry that his book will fall off his stand or he’ll lose his place due to lack of eye coordination. “Just when I think that he isn’t learning, I’ll ask him a question and he recalls the information,” said Meadows, “That’s what I call opening up a new world of learning!”

About Bookshare

Bookshare is an online library of copyrighted digital accessible books and textbooks, free for U.S. K-12 and postsecondary students with proof of disability.

Students who typically qualify for Bookshare have an IEP (Individual Education Program) or 504 Plan that requires accessible (digital) materials and reading technologies to access the general curriculum, as required by IDEA 2004 law.

Bookshare offers a vast collection (173,000+) of novels, teacher recommended reading, periodicals, best-sellers and over 7000 K-12 textbooks; many with image descriptions.

Members can download free reading technologies to improve reading comprehension and fluency, increase their independence and make easier transitions to college. Learn more at www.bookshare.org.
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About the Author

Valerie Chernek is an education technology PR specialist and disability advocate. She shares best practices about digital learning and accessible books to support children with special needs. Follow her on Twitter @valeriechernek or on Facebook.

 

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