Just Call Him Owl
Teen and his family find peace and progress at the Kistler Center
By Donna Payne
His name is Seth but he prefers to be called Owl. It puts a smile on his face as striking as the silent flight of the bird.
First interpreted by his parents as an expression of pain, Trish and George Allen realized while reading a book with Seth that he was referring to the bird.
“We were looking at a book with an owl in it and he got all excited and started saying it,” his mother said, “and that’s when we finally caught on. If you ask him what his name is ...” – Seth interrupts and says “Owl!” with a big grin.
The mother of seven – ages 13 to 23 – has an education in early childhood development. She and George were planning on another midwife-assisted birth when she sensed something different about this pregnancy. She shared her concerns with her midwife.
“Either my dates are very off or there’s more than one in there,” Trish told her. An ultrasound was scheduled and Trish was right on the second account.
The 13-year-old and his twin brother, Malachi, were born at 33 weeks gestation and spent 10 days in a neonatal intensive care unit. A few weeks later, the baby boys developed respiratory syncytial virus (RSV) and were on life support for about four weeks.
“Best guess is that somewhere in that four weeks, Seth had a stroke that went unnoticed until he was about 11 months old,” Trish said. Malachi has significant lung problems but is on track developmentally.
“I was holding Seth and took a toy to see if he would (visually) track it. There was no reaction whatsoever.” She also measured Seth’s head and it was significantly smaller than his twin brother’s.
The Allens were told Seth seemed to be blind but there was nothing to be done. Armed with the knowledge and experience that comes with being the parents of seven, Trish and George eventually made their way to the Kistler Center. That’s when things started to happen.
“Finally, we got a brain scan that showed he had a very bad stroke at some point early in his life,” Trish said. He also has been diagnosed with quadriplegic spastic cerebral palsy, microcephaly, epilepsy, failure to thrive, pervasive development disorder and cortical visual impairment.
Seth started treatment at the Kistler Center before his first birthday. The current goal is for Seth to gain the ability to use a walker.
“They’re working on walking, getting him standing on his own,” George said. “As long as he’s holding on to something, he’s walking up steps. If you hold his hands on each side, he’ll walk.”
“He doesn’t ever do anything that isn’t his idea,” Trish said jokingly.
With the help of Kistler Center staff and therapists, the Allens have seen progress that far exceeds their early fears.
“We were afraid he was never going to have any sort of life outside of being bedbound,” Trish said. “Obviously, we’ve come really far from that. He’s got the run of the house – he doesn’t walk in a traditional sense but he walks on his knees and he can open doors. He does what he wants to do.”
“Some days you’ll think he’s fine then he’ll walk into a wall,” Trish said with a laugh. “We just want to see him reach whatever potential he has.”
The emotional support parents receive at the Kistler Center is as important to them as the traditional therapies for the children.
“That’s the great thing about coming to Kistler. Before we came to Kistler, all we heard from people was, ‘We’re so sorry.’ And, you know, you come to Kistler and there’s none of that,” Trish said, tearfully. “They help you embrace your new normal. Nobody’s sitting around here feeling bad about what you’re going through – not because they don’t care but because they see beyond that. And they help you see beyond that.”
“That’s been huge for us. You come in here and see other families going through what you’re going through and you know you’re not alone. You see what their kid is doing and you think, ‘Hey, maybe that’s possible for my child, too,’ when you never had that hope before.”
Recently returning to carefully planned, in-person therapy has been essential for Seth, as well as his parents.
“This is our sanctuary,” Trish said. “This is the one aspect of his care we don’t have to fight.”
“We’re hand-in-hand with these people. They know everything that’s going on with Seth and know what to take care of,” George said. “They know what he needs. The Kistler Center has our back.”