When Chelsea Arenas tried to find toys for her 6-year-old son, she always came up empty-handed—until the faculty and staff at Assistive Technology Partners (ATP) decided to take on the challenge of creating a toy for a child like Jadyn.
“With most toys, you have to hit a button, flip a switch, squeeze, push or pull,” Arenas explained. “Since Jadyn can’t do any of those things, there was no toy we could find that he could play with by himself.”
On a recent morning at ATP’s building located midway between CU Denver and CU Anschutz, Jadyn didn’t even notice the two cameras recording his playdate with a colorful robotic toy named “Glus.” He also didn’t realize that he’s participating in research to develop “socially assistive robotics”—robotic devices that provide a social connection for the user. All Jadyn cared about was the fact that Glus was talking to him and interacting with him.
“The robot adds more quality to his life,” Arenas said.
When Jadyn was born, Arenas had no reason to suspect he would not develop normally. But by the time he was 4 months old, she realized her son could not yet support his head. When he was 8 months old, an MRI produced a diagnosis that she had never heard of but would certainly never forget—schizencephaly, an extremely rare developmental birth defect characterized by abnormal clefts in the cerebral hemispheres of the brain. Jadyn was missing a large part of the left side of his brain and a smaller part of the right side.
“I still have that MRI,” Arenas said. “To actually see [schizencephaly] is shocking.”
But Arenas, a single mother, faced the future with optimism. She sought every type of therapy and service that might help her son, and after his fifth birthday, Arenas brought him to ATP to get a power wheelchair.
“They spent time fitting the chair for him and helping him learn how to make it go,” Arenas said. “When they asked if we would be willing to help them develop a robot toy, I said we would definitely be interested.”
Glus is being developed through the Rehabilitation Engineering Research Center for the Advancement of Cognitive Technologies, which is funded by the National Institute on Disability and Rehabilitation Research. The toy is a prototype and must be controlled by a human being (dubbed the “Wizard of Oz” at ATP). ATP engineers are already working on a next-generation of Glus, an autonomous robot toy that operates independently using sensors that pick up a child’s movement patterns and auditory cues. The future Glus will be programmable to interact with Jadyn, encouraging his unique development without any human interaction.
Brian Burne, MSM ,OTR, a research instructor and occupational therapist at ATP, was initially skeptical about developing a robot toy for children like Jadyn, since he believes nothing can replace the value of human interaction for a child. But as Burne has seen Glus and Jadyn interact, he has changed his mind.
“The beauty of this is that it takes the adult out of the equation,” Burne said. “That’s what’s exciting to me. It enables the child to dictate how he wants to interact with the toy, instead of relying on an adult’s interpretation of what he wants. The adult can walk away, and the child is still playing.”
For the most part, Jadyn can only use his left side, but when he plays with Glus, his mother has seen him move his right hand.
“This toy motivates him to try new things,” Arenas said.
ATP is now working with Jadyn to adapt and customize a bed to prevent deformity, enhance his physiological needs and help him (and his mother) sleep better. For Arenas, who says that Jadyn is “her life,” having ATP’s technical expertise and support is life-changing.
“It’s so amazing,” Arenas said. “I just love them.”
When Jadyn was first diagnosed, the doctors at Children’s Hospital Colorado never told Chelsea Arenas what he would be able to do and not do. They never said to her that he may never walk, talk or feed himself. That, she says, was a “good thing.”
“I have high hopes,” Arenas said. “I’ve always said he can do what everyone else does.”
That, in a nutshell, is the mission of ATP—allowing all people to “do what everyone else does.” ATP measures success in small victories and large achievements, but they are all human victories.