Talk to any father today and most would agree -- raising children can be challenging.
Paul Pauca (pictured) is well-aware of these challenges. His 6-year old son Victor suffers from a rare genetic disorder that causes breathing problems and poor motor control, and as a result, has been hospitalized several times over these years.
Yet despite these struggles, Pauca, a computer science professor at Wake Forest University, has focused on "the better" by providing his son with the best care possible. And thanks to these efforts, his son has flourished.
"He now loves to play outside, swinging, sliding, climbing his play structure," says Pauca. "He attends a wonderful school for disabled children in Winston-Salem, NC, where he receives physical, occupational and speech therapy."
Now, with a little help from his Wake Forest students, Pauca has created "VerbalVictor," a smartphone app that not only helps his own son overcome any communication challenges he faces but one that is already helping other children and their parents as well.
USA Today caught up with Pauca last week in advance of Father's Day to learn more about these efforts and what advice he might have for other dads when facing parental challenges.
Kindness: What type of genetic disorder does Victor have?
Paul Pauca: Victor has a developmental condition called Pitt Hopkins syndrome (PTHS). PTHS is related to mutations or deletions affecting gene TCF4 in Chromosome 18. You can find more about PTHS from the Pitt Hopkins Syndrome International Network website -- pitthopkins.org. My wife and I created this website and all the information in it comes from the interaction we have had with other parents of children affected by PTHS through our PTHS international support group. This group was created by my wife, Theresa, and Sue Routledge, another mom of a child with PTHS from England, almost three years ago when Victor was first diagnosed. At the time, there was no real information available about PTHS. They created this group using Google services to provide support and reliable information from parents and for parents of children with PTHS.
Kindness: When did you have that "aha" moment to create the VerbalVictor app?
Pauca: Victor started using a communication device, called the SuperTalker at school about two years ago. He carried this device to-and-from school. The "aha" moment came in December of 2009 when I was preparing to teach a Spring semester software engineering course at Wake Forest, and was entertaining the idea of using the iPhone as a software development platform for the course. I mentioned the idea to my wife and she encouraged me to develop a communication device as Victor's SuperTalker was broken. One of my student groups took the idea and just ran with it. We had a well developed prototype by the end of the course and Victor's teacher was able to use it for Victor and other children in his class before the school year finished. It was a very powerful thought for myself and the students to realize that the tools we teach and learn at the University could be used so directly for the benefit our society.
Kindness: How does it work?
Pauca: Verbal Victor works in much the same way as dedicated communication devices such as the SuperTalker. The user is presented with a choice of buttons showing pictures of particular objects or actions, such as a swing, a cup, a plate, crackers, favorite toy, etc. When the child presses the button having the desired picture on top, an appropriate recording is played through the speakers, e.g. "I want to swing", "I am hungry," "I would like to go outside", etc. Verbal Victor takes advantage of mobile technology such as the iPhone, iPod Touch and iPad to greatly simplify how parent or therapist customizes a communication system for their children's needs. For example, to add a new button, it takes only a few seconds to take a picture and record a new sound, which, in contrast, is a quite a cumbersome task in most conventional dedicated systems available to parents of children with disabilities. Also in contrast to conventional devices, Verbal Victor costs a few dollars ($7) and can be used on most iPhone, iPod Touch and iPad devices. Conventional devices can cost between $600 to several thousands dollars and do not have the capabilities available in current mobile devices.
Kindness: Who is its intended target?
Pauca: Verbal Victor is intended for children with emerging communication and cognitive skills. It is not intended for people who may have suffered accidents that affect their speech but who otherwise have full cognitive ability and motor control.
Kindness: How many folks are using the app so far?
Pauca: We have sold around nearly 2,000 copies of Verbal Victor to date. It has far exceeded all our expectations. People from all over the world have downloaded it for use by loved ones affected by a variety of conditions including developmental syndromes such as PTHS, autism, Parkinson's disease, Lou Gehrig's disease, etc. We released an update in March for the current version and are planning additional releases by the end of this summer.
Kindness: As Victor's father, how does it feel to be able to make this kind of impact in the world?
Pauca: I have been very lucky to be able to do something about the challenges being faced every day by parents of children with disabilities. The options available for people with disabilities are limited to old technology dominated by expensive and cumbersome dedicated devices. These devices are difficult to use and honestly lack in style. With the advent of modern mobile technology such as the iPad, this is all changing. More and more people, who would otherwise not be able to afford dedicated devices, will be able to shop for and use apps for disabilities than ever before. This is particularly true in third-world countries where dedicated devices are just not accessible. I am honored and extremely excited to be able to participate in this change. As a scientist, I know of the many things we can do now with machine learning, imaging, and related technology for military and other purposes. I dream of a future where parents all over the world will have many highly affordable options and the best technology possible right at their fingertips to help their loved ones.
The response I have received from parents and family about Verbal Victor has been overwhelming. There is so much need out there that helping people with disabilities is becoming my calling. I'm dedicating a larger effort of my research to this cause and hope to continue to grow it in the near future.
Kindness: What do your students have to say about being able to use their education to make a difference?
Pauca: I think most students have found the experience to be highly enriching. We've been able to visit some local schools to meet the children and their parents. It is so powerful for the students to hear directly from the parents how the things they learn as a part of the college career can have a tremendous impact in other people's lives. Tommy Guy, the lead developer of Verbal Victor, is now a PhD student, specializing in human computer interaction for disabilities and other problems at the University of Toronto.
Kindness: What advice do you have for other fathers when they face challenges -- for whatever reason -- in raising children?
Pauca: Raising children is one of the most wonderful and rewarding experiences one can ever have, and raising a child with disabilities can be even so much more. In spite of all his little challenges, Victor has brought true happiness into our lives. He has taught us to pause and enjoy every little aspect of life. He always stops to look at the flowers and the birds and feel the wind in his face on our way to school. He has taught us to admire and be thankful for all the little things and all the little gains our children achieve. My wife likes to say, I can choose to be bitter or better, and I choose to be better. Because of my son, I have found my mission to help give a voice to those without one.
Tuesday, June 21, 2011
Son's disability gives computer scientist father inspiration for smartphone communication app, VerbalVictor
Posted by BA Haller at 7:08 PM