Beacon of Hope Alumna Discovers Passion In Helping Children With Traumatic Brain Injuries
In July 1987 when my brother Eric was almost 13 and I was 14, he was struck by a car while riding his bike. It started to rain, my mom was cooking dinner. A stranger pulled into our driveway and ran up to our front door yelling, “Do you have a child on a bike?” I remember every single little detail about that day – it’s interesting how our brains work when our basic “fight-or-flight” response is elevated.
Eric sustained a compound fracture of his femur, multiple fractured bones throughout his body, and two basal skull fractures resulting in a severe traumatic brain injury (TBI). He was in a coma for several days at a Pittsburgh hospital, more than an hour from our home, where he remained for over a month. He then went to a rehabilitation facility for several more months before re-entering school. More than 20 years later, I can talk about what happened that day, I just can’t “think” about it, because if I stop and actually think about it, I cry.
That is the quick version of one of the most difficult times of my life. Watching my brother re-enter the school, and having no one understand TBI and its impact on education proved very challenging for my parents. Eric looked and appeared to act completely normal. The doctors even said he would be “fine.” But, in the medical world, that simply meant, “He was going to live.” Hence the TBI terms, “the silent disability” or the “walking wounded.” The brain is in charge of every single aspect of who we are. TBI impacts one’s soul.
It wasn’t until an introductory course with education professor Charles Novak at Wittenberg that I learned that the term “TBI” was added to the IDEA Special Education Law in 1990 as a specific disability category needing specialized instruction under the law. I knew at that precise moment that I needed to pursue this route. I went on to the only master’s training program in the world, at George Washington University, specifically devoted to training educators on how to create optimal educational programs for students with TBI.
Parents of children who survive TBI have lived through every parent’s worst nightmare. For these parents to have to battle schools for appropriate services was unfathomable. I watched what my own parents went through and knew something had to change. Twenty years ago, these children would have suffered tremendously from TBIs, but they are now living longer and returning to school with severe disabilities due to medical advances. Educators, however, aren’t adequately prepared nationally to work with students who need cognitive remediation for attention, memory, processing speed, etc.
I needed to find a solution, so I assisted in the creation and development of the Pennsylvania Brain Injury School Re-Entry Program called BrainSTEPS (Strategies Teaching Educators, Parents, and Students) under a federal grant from the Pennsylvania Department of Health with full implementation from the state’s Department of Education. The response to BrainSTEPS has been overwhelming! Our teams assist districts in education, training, resource dissemination, parent support, and educational programming for students following brain injury. Pennsylvania is over 85 percent covered with BrainSTEPS teams, consisting of more than 250 team members. The gap between the medical and educational models is being bridged. BrainSTEPS is now available to all 500+ school districts in Pennsylvania, and every state pediatric hospital and rehabilitation facility is involved.
I believe I have a responsibility to families of children who have suffered a TBI. I want them to know that I completely understand, have been there, and WILL find a way to help them regardless of what families have gone through to the point of finding BrainSTEPS. We each have responses to experiences and challenges that are encountered in life. Every experience in life teaches us something. It is our individual response to those experiences that is critical. The BrainSTEPS Program is my way of passing light on to parents and educators to ensure that an otherwise dim outlook can be illuminated with hope.
–Brenda Eagan Brown ‘95