Ivan Asher, 18, loves interviewing some of the biggest name actors in cinema and television during comic cons — conventions for fans of comic books and related media entertainment.
Using his media pass, he has interviewed Lou Ferrigno (“Incredible Hulk”), Jon Schneider (“Dukes of Hazzard”), Stephen Amell (“Arrow”), Charlie Cox (“Daredevil”), Norman Reedus (“Walking Dead”) and many more.
Seven years ago, asking questions was not possible. Ivan, who is nonverbal and nonmobile, had no way to communicate. What he was thinking, feeling or wanting was always a “best guess” for his mom, Cheyenne Asher, who learned to identify his needs through grunts or facial expressions.
Cheyenne knew there was a voice inside him — it just needed to be unlocked. One of his doctors, Alice Lawrence, MD, a developmental medicine doctor at Monroe Carell Jr. Children’s Hospital at Vanderbilt, agreed. Lawrence, assistant professor of Pediatrics in the Vanderbilt Division of Developmental Medicine, introduced them to EyeGaze technology, an eye-driven communication device in 2017, when Ivan was 11. With the device, Ivan would be able to use his eyes to pick out preprogrammed statements or questions.
“When I first met Ivan there was such a ‘spark’ of understanding that you could see in his face and expressions that I was sure he would have a lot to say if he was able to communicate it.”
Alice Lawrence, MD
“Dr. Lawrence said, ‘I know there is so much more inside of him — if we can just get it out.’ That statement meant everything to me. There’s so much in him, and there is so much personality. If it hadn’t been for people believing in him, there was so much I would never have known,” Cheyenne said.
‘Give Ivan the best life we can’
Born with Dandy-Walker Syndrome (DWS), Ivan’s brain didn’t fully develop in the womb. Imaging scans revealed that he has only a portion of his brain, with much of the space in his skull occupied by a dark void. He also has cerebral palsy (a condition that affects movement and muscle coordination), suffers from seizures, and has many complex care needs. Adopting Ivan at 5 months old in 2006, the Ashers first took Ivan to a neurologist in Kentucky who offered a grim outlook.
“The (Kentucky) doctor said, ‘He will be like a vegetable. He will never talk, walk or move. If you take on this baby, he will never do anything,’” Cheyenne recalled. “They said he would never smile, and yet, he was smiling.”
She refused to believe that statement was true, transferring Ivan’s care to Monroe Carell, where she already took her daughter for seizure care.
With an honest and yet hopeful outlook, Cheyenne was met with a totally different viewpoint from Ivan’s new Monroe Carell health care team: “They said, ‘We’re going to try to do everything we can to give Ivan the best life we can,’” she remembers. “Instead of saying, ‘He can’t, and he won’t, and he will never,’ it was, ‘Everyone will see what he can do and how we can get him there.’”
Lawrence offered EyeGaze as a possibility for Ivan.
“When I first met Ivan there was such a ‘spark’ of understanding that you could see in his face and expressions that I was sure he would have a lot to say if he was able to communicate it,” Lawrence said.
“I knew given the difficulty he had controlling his arms that the best chance of him effectively communicating would be with something like the EyeGaze system,” Lawrence added.
Before Ivan could qualify for the device, he had to go through a series of tests at the Vanderbilt Bill Wilkerson Center, which specializes in diseases of the ear, nose, and throat, and communication disorders.
“He had to hit targets on a screen with his eyes, and he hit every target,” Cheyenne said. “To show proof, he had to go back week after week, and he blew through it all.”
Now, he can tell his mom when he needs to be moved or is hurting, and he can say, “I love you.”
Over the years, Ivan has spent a lot of time in the hospital and clinics at Monroe Carell, seeing a host of doctors, in urology, complex care, developmental medicine, orthopaedics, neurology, pulmonology and endocrinology, among others. Being able to communicate with the tool has been invaluable.
“Being able to communicate has been such a wonderful change for him and it has been my pleasure to watch him grow and develop. He has such a wonderful personality, and it is able to show more and more,” Lawrence said. During his hospital stays, one of his many favorite care teams is in Seacrest Studios at Monroe Carell, an interactive broadcast studio that allows patients to explore the creative realms of radio, television and new media to aid in the healing process during a visit to or stay in the hospital. Ivan never misses an opportunity to participate in an event. The group even recently hosted a graduation celebration for Ivan in the studio.
“How lucky I feel to know people like Ivan and Cheyenne. They are always encouraging others around them, and I look forward to their visits in Seacrest Studios,” said Mamie Shepherd, studio program manager. “Ivan is a very special person, and Seacrest Studios has been a home away from home for him. He has been able to host his own show in the studio, and interview lots of special guests over the years.”
Around the same time Ivan began using EyeGaze, singer/songwriter Halsey was visiting the studio. The team asked if Ivan would want to ask Halsey a question.
“We programmed some questions. He asked her, ‘Who is your celebrity crush?’ He just lit up,” Cheyenne recalls. “He kept wanting to ask more and more. It just sparked something in him. I never would have seen that side of my son, that part of his personality without the EyeGaze. I would never have known before Seacrest Studios that he wanted to interview people. The way the hospital and Seacrest Studios make sure every patient in every room is included is just amazing.”
Shepherd notes that the Seacrest Studios team is driven by helping patients like Ivan.
“So many times our voice — not the one you can hear, but the one that is deep down inside — can get lost in our circumstances or diagnoses. When patients like Ivan come to Seacrest Studios, they find that voice again or maybe for the first time. What a magical, powerful thing that is to witness,” she added.
Since learning of his love for interviewing, Cheyenne has taken him to five comic cons, with more on the horizon.
His favorite questions to ask celebrities, she says, are: “What’s your favorite thing to do with your family? Do you have any pets? What’s your favorite way to have fun?”
The EyeGaze also offers Ivan some creative outlets. Using his eyes, he can create paintings. Cheyenne notes that she can tell his mood or how he’s feeling based on the result. Darker colors can mean he’s not feeling well, while brighter colors reflect his happy nature.
Ivan also has a pretty good sense of humor too. Using the EyeGaze, he has a selection of jokes that his eyes can choose from. One of his favorites to tell: “How does Darth Vader like his toast?” The answer: “On the dark side.”
Cheyenne reflects on all that has happened since Ivan was given the opportunity to communicate. At the end of the day, she has one hope, one goal: “In the process of sharing Ivan’s story, I am advocating for others. It shows people there is so much more in people like Ivan. I am hoping others can see, through Ivan, the possibilities,” she said.
“How incredibly thankful I am for the hospital, and when I say the hospital, it’s the entire staff. It’s every single person that makes it work because we are there so often, and because we’re there so often, I see every aspect of it.”
