The Family Center on Technology and Disability

Meet Karly W. and learn about her successful use of assistive technology.

Horses, music, outdoors, and dance. These are just a few of the passions that high school student Karly W. has in life. Karly is a magnificent young woman who knows what she wants in life and is working hard to achieve it.

One of Karly’s greatest loves is her helper miniature horse, Beau, who, she says, has changed her life. She loves being with him, and feels very relaxed when she is. He is her only animal, and is a great friend to her. She sees him everyday; he is even allowed in the house to be with her. Beau is a young horse and can sometimes get very excited when he is in his paddock, but when he is near her, he is calm. Beau is a lot of fun for Karly and he helps her breathe better.

Karly’s passion for horses, however, extends beyond Beau. She also rides with a local therapeutic riding program. In the summertime she loves to be outside, and takes advantage of the trails near her home, for long walks and picnics. When she is not riding or participating in other outdoor activities, you can find her relaxing on her deck, enjoying the many flowers and birds that are there.

When she cannot be outside, Karly enjoys other activities. She composes music with the help of a music therapist. She takes her composition of music very seriously, and puts a lot of time – 6 months to a year - into making sure the piece sounds perfect. She goes through the music note by note to make sure it is exactly what she wants. Her love of music really shows in the CD that she’s made, featuring her own compositions. Each of the seven pieces composed for piano were inspired by people, experiences and special events in her life. She composed a song that was played publicly for the first time at her mom’s wedding ceremony. She entitled it "For Love."

Assistive technology (AT) allows Karly to enjoy music in other ways as well. On occasion she uses a music system at school that is connected to a personal cassette player so that she can listen to music between classes and while walking in her gait trainer. The music was designed by a music therapist in order to create a certain beat that promotes her walking. Karly really enjoys moving to music and looks for other ways to do this as well, including belonging to a local wheelchair dance club.

The biggest, most important piece of assistive technology in Karly’s life is a brain-actuated device called Cyberlink (http://www.brainfingers.com). This piece of hardware allows users to control a computer without using their hands. It can be applied to most AAC software, educational software and video games. When using this device, Karly wears a Cyberlink headband, which detects electrical signals from her facial muscles, eye movements, and brainwaves in order to operate.

Karly uses a lot of this AT during the school day. She is assisted with the set up of the materials as she uses eye gaze to select which software she would like to work on during a specific class. She wears the Cyberlink band and has to think about a choice or complete the action of clicking on certain segments of the computer screen. Karly still needs supports such as verbal cues when the person assisting her has moved the cursor. However, once the cursor is set, Karly does all the activation herself.

Karly loves to read the Start-To-Finish Books, and has read almost all of them! She has also made some of her own books using ‘My Own Bookshelf’. The use of Cyberlink has created a lot of opportunities for Karly by allowing her to use a computer more freely. When using the computer, she likes to create her own music on a minuet software game, make PowerPoint presentations, and experiment with various educational and game software.

Like so many young people, Karly spends hours searching the Internet and is able to find graphics, pictures, videos and much that she can use in creating books and presentations. She also researches various topics of interest and is able to create visual projects to share what she has learned with others.

Cyberlink has made a big impact on Karly’s life. Before getting the technology, Karly used some low-tech word cards or text messages to make her choices. She continues to use the word cards for some choices, but she is now able to also make expanded choices using the computer. Assistive technology has brought new opportunities for learning, being productive, and having fun. Cyberlink has given her more independence and the hope that someday she will be able to communicate more independently.

Cyberlink was a gift from the Make-A-Wish Foundation. In order for Karly to be able to make the best use of this piece of technology, the school has trained all the staff that work with her and help her in using it. The school also experiments with a variety of software in order to help her learn as much as possible.

Karly also uses AT to help maintain her walking and lower body strength and flexibility. She uses a gait trainer for supported walking, which helps her navigate through the hallways at school. Sometimes she uses the Easy Stander for supported standing as well.

The AT that Karly has been able to use has really impacted her life and has gotten her closer to some of the goals she has in life. Her dream is to be able to lead a full and fulfilling life. She wants to sing and dance and go to the mall and shop for cool clothes when she wants to. She wants to go to church and be loved. She doesn’t want to be invisible in society, and wants to live in a place that respects and cares about her the way her loving family does. Her hope is to continue to compose music, which gives her a voice that others can hear. Karly has Rett Syndrome and cannot speak, so music is her way of communicating with the world.

Karly loves spending time with her family. She has four siblings whom she enjoys being with. If there was one thing she could change about the world it would be that she wishes the world would see her. She wants to be an active member in her community and have the freedom to do the things she enjoys doing. She wants people to recognize her and her contributions. She wants the world to be a place where we don’t look only at our differences and where everyone is respected. She hopes to see this change in her lifetime, but until then she is going to continue enjoying life and working towards her goals with the help of AT.

If you have or know of a child/teen who has experienced success through the use of assistive technology that would like to be featured, please contact us at agutierr@aed.org.