South Jordan woman’s nonprofit connects brain injury survivors to resourcesFeb 23, 2022 06:51PM ● By Karmel Harper
Alex Crook suffered a traumatic brain injury in 2013 when he was 5 years old. (Photo courtesy of TyAnne Crook)
By Karmel Harper | [email protected]
In April 2013, South Jordan’s TyAnne Crook’s life changed forever when her then 5-year-old son, Alex, fell from a department store escalator that was installed without the required safety features.
“I watched my little boy lying so still that he looked dead,” Crook said. “Sometimes his eyes would flutter open. Sometimes he would say something. Doctors and nurses said so many words that I knew the meaning of, but I couldn’t make sense of it. All I knew was a strangulating fear. Even when he came home from the hospital, I slept next to his bed for weeks.”
Alex was diagnosed with a skull fracture, brain bleed,and traumatic brain injury. Crook was given the usual cautions and things to watch out for such as rest, avoiding screens and alerting their doctor should anything change. Well, things certainly changed.
“Once the period of sleeping all the time wore off, he was always angry, which was weird because he was normally such a happy kid,” Crook said. “I figured his head still hurt where the fracture was, and it would go away. It didn’t. He hated all the foods he used to love. He was so anxious about everything. He started these weird behaviors like hoarding food and changing his clothes six or more times a day.”
“Fairly quickly, he wasn’t just angry anymore; he became violent,” she continued. “Violent enough that everyone else in the house was afraid of him. Does a 5-year-old have the strength to throw a dining room chair? He does. I went to the doctor and was brushed off. I went to the doctor again and again. Things were getting worse. He wasn’t sleeping anymore. He used to perform all the normal activities of daily living that were age-appropriate for a 5-year-old, and now he couldn’t. He couldn’t remember how to get dressed or tie his shoes. He couldn’t figure out brushing his teeth or even showering anymore.”
From doctors, friends, family and neighbors Crook heard every possible explanation for Alex's behavior. “He’s overcoming a traumatic experience…he’s just a brat…he’s lazy…you’re lazy…he needs discipline…maybe you need to see a counselor for your attention-seeking behavior.”
“And then one day we met a doctor that changed all that,” Crook explained. “Out of the many doctors we had seen, this was the first to understand the long-term consequences of brain injury. The doctors in the hospital were great at acute care. They put Humpty Dumpty back together again.”
Brain injury is more common than many people realize. While most hear about TBI, it's not always understood that concussions, strokes and aneurysms are also brain injuries. Encephalitis, hydrocephalus, carbon monoxide poisoning, hypoxia, anoxia, brain tumors and even birth injuries can result in brain injury.
“Approximately 60% of our prison inmates have a history of brain injury. This is due to poor impulse control and other typical symptoms post brain injury. It’s estimated that more than half of the homeless population is brain-injured. Mental health problems are common in the brain injury community with 40% of survivors experiencing severe enough depression to require medical intervention,” Crook said.
Crook’s journey with Alex inspired her to start the nonprofit BrainStorm for Brain Injury (www.brainstormforbraininjury.com). This organization connects brain injury survivors to therapists, community resources, legal experts and other survivors and their families.
“The advice we were given at the hospital was wrong,” Crook said. “If you’ve experienced any brain injury, see a physical medicine and rehabilitation doctor who specializes in neurorehabilitation as soon as you can. Also, concussion protocols are worthless.”
BrainStorm for Brain Injury provides resources to providers and experts, and advocates for TBI.
“To all the caregivers out there, you are heroes,” Crook said. “To all the survivors out there, you can do this. To everyone else out there, remember that if you see someone who looks like everyone else, but they are easily distracted, maybe a little more impulsive, have a hard time getting started, unusually forgetful, have a hard time relating, is often overwhelmed, or doesn’t put together basic cause and effect, they might have a brain injury. They aren’t doing it on purpose. Brain injury is invisible.”