It has been almost ten years since traumatic brain injury (TBI) crashed into our lives, changing our family forever. People always ask, “How is your son Paul doing now? How are you, your husband, the other kids? How has your family survived?” I usually give my polite, standard answer: “Oh…thanks for asking, we’re all doing fine. And you?” But the reality is — unless you have experienced the loss, the heartache, and the ripple effects that brain injury can inflict — you cannot possibly understand the magnitude and the seriousness of the life-altering implications. The long-term impact that TBI imposes on the injured person, family members, and friends is unthinkable. The nightmare of TBI relives itself day after day, month after month, and year after year. Grief and sadness persist even ten years later, despite all the miraculous gains my son has made since his initial injury.
After the shock of Paul’s accident and TBI diagnosis ― when I understood the reality and severity of his injuries, knowing that they were likely to include lingering deficits and handicaps ― I wanted to bury my head under a pillow and slip under a thick blanket of denial. But to survive, I realized the necessity of being strong-willed and maintaining an attitude of never giving up. Everyone — myself and my family as well as the doctors, nurses, therapists, and even Paul himself —would have to draw on inner resources we had not known existed.
In the early stages of Paul’s injury, he was immobile and essentially in a vegetative state. We suddenly had to become his eyes, his ears, his voice. We needed to advocate for his every need. My husband and I fought to find the best medical, financial, educational, legal, vocational, and rehabilitation services available. We never stopped advocating for our son’s needs or for those of our family. As days turned into months, and months turned into years, I do not know where our energy or drive came from to venture into areas we knew nothing about. But there was no way we would stand idle without trying to help our son possibly regain even some of what he had lost after being struck by a car while riding his bike at age 13.
We came to realize that the outcome of each TBI, like each person, is unique. A person’s outcome depends on the specific circumstances and severity of the injury, immediate and long-term medical care, rehabilitation services, and the individual patient and family. We also learned that many people with TBI plateau relatively soon after their injury, without making huge gains. Sometimes these injured people and their families are left to cope with so much beyond their control: cognitive, memory, behavioral, physical, emotional, and social changes … the medical bills and never-ending insurance claims … the everyday demands of cooking, laundry, cleaning, yard work, going to the office, maintaining a marriage, and keeping other children’s studies and activities moving forward.
Rehabilitation: After many months in ICU, our son was stabilized, but the urgency continued. Getting him into a rehabilitation hospital was key to learning how to speak, to walk, and to perform basic tasks again. We knew Paul’s recovery was questionable and that he could possibly remain bedridden, wheelchair-bound, or cognitively impaired. But the months of grueling shifts of speech, occupational, and physical therapies began to pay off. Paul fought back like a champion! We began to see small gains — he blinked his eyelids, lifted a finger, uttered a word. Seeing the healing begin was powerful and moving. Yet Paul still had a long way to go.
Reintegrating Home: Anticipating Paul’s release from the rehabilitation hospital, we were faced with a new set of questions. What would we do next? Paul was still using a wheelchair and a walker. He was still struggling with memory and speech loss. He still needed assistance with everyday activities and self-care. I worried about how we were going to cope. When my husband or I were home, we’d tried to focus on the needs and cares of our other children, while managing the daily chores that made the household run smoothly. When we’d been at the rehab hospital, our only focus had been to take care of Paul. I was not sure how, or if, it would even be possible, to mesh these two demanding worlds into one.
I knew our family would be under more stress and would have to surpass the extraordinary level of support and help we were already extending to each another. We had to think about all aspects of home nursing and medical care, to obtain and install all assistive and adaptive equipment, and to prepare Paul’s siblings for the homecoming of their “new” brother. We suggested ways for the other kids to help, and we gave them permission to back off if need be. The caregiving was both never ending and exhausting. We had to recognize our own limitations, shed any guilt, and ask for help from our community, friends, and family.
Outpatient Therapy: Continuingoutpatient therapies was important to help Paul regain more movement and thinking capabilities. We logged many miles driving to and from his new outpatient facility, 20 minutes from home. I was shocked at how many injured or maimed people came and went every half hour. Missing legs and arms could have been one of the criteria for entry. And the therapies went on and on and on….
Reintegrating Back to School: We tried relentlessly to set up home tutoring through our town’s special education department to get Paul the mental stimulation he needed to continue recovery. But after investigating special needs schools and other facilities, we made the hard choice to try to reintegrate Paul into the public school system. We recognized the challenge because specific educational processes and styles used in teaching TBI students are very different from those used in teaching individuals who have permanent birth defects. Paul needed an Individual Educational Plan (IEP) geared toward his specific needs. He underwent a neurophysiology examination, which is concerned with the relationships between brain function and behavior and considers how injury may affect learning, communication, planning, organization, and relationships with others. The neurophysiologist evaluated Paul’s cognitive abilities and deficits and provided teachers with suggestions and methods to stimulate and improve new learning. In other words, the evaluation was used to help develop Paul’s IEP. When Paul returned to school, the break from constant rehabilitation allowed our days to regain some degree of normalcy.
Written exclusively for BrainLine by Dixie Fremont-Smith Coskie. © Dixie Fremont-Smith Coskie, 2010. www.dixiecoskie.com.