My son, Nathan, was diagnosed prenatally with a severe condition called holoprosencephaly (HPE), a disorder that affects brain development. His brain did not separate into two hemispheres, giving him very limited control over his body. In the past, a condition like this would've left him completely isolated and locked into his body. Fortunately, as technology has evolved, my son now has several tools to help him communicate and control his environment - even a computer device that gives him a voice!

DynaVox

Most of us don’t think about it, but to speak we need to be able to control the muscles in our cheek, tongue, and face. Nathan’s brain malformation makes it impossible for him to control any part of his body, so he is unable to speak.  He understands language and everything going on around him, he just cannot control his body in order to make words.

Nathan’s DynaVox is what we consider to be the most important piece of technology that we use to communicate with Nathan. It’s basically a Windows-based computer that has been adapted with hardware and software to become an actual communication device, and in the last few years, that same company has developed a special attachment that allows our son to communicate with the device via retinal scanning. Essentially, Nathan’s eyes are the mouse, and wherever his eyes go, the cursor goes. Just like a regular mouse, he can blink to click and make a selection.

Before this device, my son did not have the ability to communicate and physically make choices. This program has given my son a voice as well as a new lease on life.

Using this hardware and software, we've put together a core vocabulary that he uses on a daily basis to communicate. He can tell us what he wants to eat, who he wants to play with – everything any child would tell his parents.

The DynaVox works amazingly well for us because Nathan is a very smart child – he just physically doesn't have the ability to speak or have control over his motor skills.


A child using one of the products designed by DynaVox.
(Image Courtesy of Flickr)

iPad

While Nathan has limited control over his hands, he can still hold an iPad and use the touchscreen to make selections. The variety of educational apps on the iPad is staggering, and he uses them regularly.

Generally, we use the iPad more for entertainment than communication or learning. He enjoys the educational apps and games, and it’s particularly helpful for Nathan since he can use it to play with his brother and sister and feel like he’s part of the group.


The iPad has become an important partner in our son’s daily life.
(Image Courtesy of Flickr)

Software and Switches

Over the years, we've used a variety of different pieces of technology to help Nathan. Software programs, like Boardmaker, helps us create lesson plans and fairly complex educational materials that we can use with the DynaVox system to educate Nathan.

Nathan has also participated in some advanced testing for electronic products and methods to help other children with special needs communicate and learn. For example, he spent a week at Rutgers University helping researchers test electric impulse machines (similar to EEG machines) in a program designed to measure stimulus and brain response.

This particular study at Rutgers University gave us a lot more insight into Nathan’s thinking and his intellectual abilities.
We also use different switches that enable him to control things like toys and games. We even use a switch that allows Nathan to control the television and radio, and that’s particularly helpful because it gives him the control over his environment— something that any child would have.

Technology plays a fairly large part in Nathan’s life. Without the DynaVox system, communication would be much more difficult and time-consuming. It would also be very frustrating for Nathan and for us as parents.

While we’re hoping the technology progresses even more to help all types of children with special needs as well as our son, the technology that is available has greatly improved his quality of life, and we’re very thankful for that.

Marcela De Vivo is a freelance writer from Southern California whose writing covers everything on special needs education and inclusion. She also writes for Northwest Pharmacy. As a mother of a special needs child, she encourages other parents of special needs children to take advantage of today’s technology to improve their children’s quality of life.