When 5-year-old Evan Sebesta donned his new baseball cap, his world and the world of those who love him was forever changed. Not in the typical way one would imagine – no home runs, popcorn and Cracker Jacks – but by the newfound ability to communicate. Sebesta, who was born with birth defects that left him without arms and legs and a limited ability to speak, had lived a solitary existence with no means to communicate – until a special group of people came together and, along with technology, changed his life.
It started with a question posed by Barbara Hottman, Sebesta’s special education teacher at R. J. Wollam Elementary in Santa Fe, Texas, to Sam Herrera, a maintenance man at the school. Hottman used the iPad as a teaching aid in her room, but was restricted in what she could offer Sebesta because of his physical limitations.
“She wanted to see if we could come up with an idea to make the iPad easier for Evan to use, so he could demonstrate what he was capable of,” said Herrera. “So I went over one day and met him and made some suggestions. I left campus and bought everything I needed and in about an hour I came up with the hat, and it worked.”
The hat is a baseball cap whose bill has been cut to a strip to hold a securely fastened hot dog skewer, which, in turn, holds an iPad stylus. As soon as Sebesta put it on his head, he began to communicate and he hasn’t stopped yet.
“It was the first time in five years that I was able to communicate with my child and know his true wants and needs.” said Phylicia Sanchez, Evan’s mother. “It has completely changed our world. We always knew that he knew what we were saying to him and he was trying to communicate with us, but he just couldn’t find the words. His teachers have done so much for him. They taught him how to talk with an iPad and communicate.”
Meghan Lippert, Sebesta’s speech therapist, says that since she began working with him and using the iPad she has seen his immense desire to communicate.
“Now he is able to do basic skills such as identification of animals, feelings, social speech. I definitely think that this is something he enjoys as compared to attempting verbalization, which is hard for him. He really wants to communicate — he loves it,” said Lippert.
Not only did Sebesta have problems with communication but he also had hearing loss that was not detected until 2011 when he was seen by pediatric ear, nose and throat specialist Dr. Harold Pine at the University of Texas Medical Branch – a visit that marked the beginning of a new journey for Sebesta.
“Improving Evan’s ability to hear has made things so much better for him,” Pine said. “It has allowed him to do better in school and enjoy all those things that come along with having normal hearing.”
In a follow-up visit with Pine, Sanchez told him the amazing story of how the iPad had revealed how much Evan knew and understood, but had never been able to share until now.
Pine asked Evan’s mom how she worked with him at home and she said their family could not afford an iPad. “After our clinic visit I shared the situation with my residents and students and we unanimously decided to solve the problem,” said Pine.
Dani Smith, second-year medical student helped raise money for Evan's iPad along with Dr. Harold Pine, UTMB Pediatric Ear, Nose and Throat Specialist.
Dani Smith, a UTMB second-year medical student, turned Sebesta’s problem into her Osler Society special project and, along with help from other Osler Societies within the UTMB School of Medicine, raised enough money to purchase an iPad for Evan to use at home.
Through other donations from UTMB faculty, friends and relatives, Pine was able to purchase Evan’s mom her own iPad and an iTunes gift card for the iCommunicate software, as well as five iTouches, which he donated to Hottman’s class.
“It is amazing to me how tablet computers, especially the iPad, are changing education from the Pre-K years all the way through medical school. The portability, accessibility and adaptability of the iPad has gotten the special education community very excited,” said Pine.
Evan still has many challenges ahead, however. Pine hopes this gift will allow Sebesta to continue his studies this summer and that his teachers will continue to find new ways the iPad can be used for educational and recreational purposes.
Thanks to the generosity of many, the little boy with the contagious grin and special baseball cap is sharing his wants, needs and feelings for the first time in his life and giving others a special gift in return.
Perhaps Herrera summed it up best.
“To be able to help him show what he is capable of, to be a part of that, it makes me feel good. I will never forget it. It really did something to me; it opened my heart.”