Exploring the Emotional Impact of a Child's Undiagnosed Traumatic Brain Injury (TBI) on the Family
When your child has an undiagnosed traumatic brain injury (TBI)—as is often the case with closed-head injuries—both the child and the family suffer needlessly. Claire Galloway, whose 22-year-old son died by suicide following a childhood playground accident, shares the emotional journey parents of children with undiagnosed TBI can experience.
Traumatic brain injury (TBI) is one of the leading causes of death and disability in children. It doesn't just affect the child who is injured, but can have a devastating impact on family members as well, especially if the injury remains undiagnosed. Claire Galloway knows this all too well. Her son, Luke, suffered a closed-head TBI at two years old, when he was struck by a playground swing in full motion. This accident changed everything for Luke—and for his family—but neither his doctors nor his teachers identified his TBI symptoms as TBI.
"Immediately following Luke's accident, I realized something was seriously wrong," says Galloway, author of A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury (Brandylane Publishers, 2017, ISBN: 978-1-939-93094-1, $16.95, www.acalltomindtbi.com). "But because he appeared to be 'fine' on the outside, no one took his symptoms seriously—not his pediatrician, his teachers, two pediatric neurologists, several child psychologists, or family and friends. Both the symptoms and the lack of help or support took a devastating toll—not just on Luke, but also on the entire family."
Because Luke's wound was invisible, professionals and others blamed both Luke and his parents for the behavioral, social, and educational difficulties Luke displayed following the accident. This cycle of misdiagnosis and blame is not uncommon in cases of closed-head injury.
Shockingly, Luke's TBI remained undiagnosed for 16 years. While his parents desperately searched for answers and validation that something was wrong, Luke struggled through seizures, anxiety, difficulty in school (despite his high IQ), impulsive behaviors, social isolation, and depression. Despite years of distressing symptoms, doctors dismissed his parents' claims that Luke had a real medical problem caused by his accident. When he was finally diagnosed with TBI at age 18, a workable, effective treatment plan could not be found. At age 22, wracked with despair and hopelessness, Luke took his own life.
A blow to the head is often an injury that's invisible to the outside world. Nevertheless, it can drastically alter brain function and behavior. For some people, the change is temporary. For others, it never goes away. Yet because there's a tremendous lack of knowledge and awareness around head injuries and how they manifest, parents of a child with TBI often experience a lack of understanding from nearly everyone.
Galloway's ultimate goal is to educate parents, teachers, and medical professionals about the drastic impact of undiagnosed TBI. She has a message for the parents and loved ones of children with head injuries that may or may not yet be diagnosed: You too will likely experience a host of emotions, struggles, and trauma due to the lack of awareness surrounding this injury.
Hope is the tie that binds. As you navigate your child's journey following a strike to her head that causes behavioral, social, and/or cognitive changes, hope is the overriding emotion that drives you forward toward some sort of disclosure as to cause. You will think, My child must be okay! The alternative is unthinkable, and a cause for his downward spiral must be found soon! Meanwhile, you witness other children seeming fine after an accident, and realize accidents happen all the time. So you think, Surely my child will be fine, too. This is a double-edged sword, says Galloway. It keeps you going in the face of frustrating and scary symptoms, yet it can also lead you to believe her doctor or teacher when they tell you she is fine, which might keep you from seeking further testing or evaluation.
"As parents, your greatest hope is that your child's life will be full of blessings and not challenges," says Galloway. "You hope that they never face anything beyond the normal, mainstream life challenges. But an undiagnosed TBI changes everything, and there are no answers as to why. Still, hope is strong; you continue believing your child will soon return to her normal, happy self. It never leaves you."
Professionals may not believe your claims or support you. Tragically, the very people on whom you rely for help may not support you, warns Galloway. Again, she links this travesty to the lack of awareness around TBI.
Galloway herself had a post-encephalitic atrial heart rhythm disturbance that remained undiagnosed for 20 years. Numerous cardiologists failed to identify the disorder and did not believe her claims of passing out in ballet class or dry heaving after tennis matches. They insinuated that she was overreacting and neurotic, until her condition was finally diagnosed at a major medical center and successfully treated. Years later, Galloway recognized this same pattern of behavior in Luke's doctors as she sought diagnostic help for him.
"Countless experts told us to just 'let it go,'" says Galloway. "I learned to walk a fine line between pushing medical professionals too hard and doing my own research to find additional evidence to support my claims about Luke's injury. Still, I felt I was never taken seriously."
You will frequently feel confused and anxious. As Luke progressed in school, it became obvious to Galloway that he was reading more slowly in comparison to his classmates. She intuitively believed the accident involving the blow to his head as a toddler was continuing to affect him, but his teachers told her Luke was simply lazy. Her at-home observations told her this was far from the truth, but she struggled to accept the educator's explanation.
"The fact that things didn't add up about Luke's cognitive abilities, which didn't begin to show fully until middle school, kept me in a haze of confusion," says Galloway. "You can try to force yourself into balanced thought, but with TBI, balanced thought does not fit the situation. Even if everyone around you insists that your child is going to be fine, the realities surrounding him are pointing in another direction. It is nearly impossible to calm your mind."
Self-doubt eventually sets in. As physicians, teachers, and other potential allies discount your observations about your child's changed behavior, you will inevitably question your own instincts and begin to doubt yourself. But Galloway urges you to listen to your parental intuition and don't give up.
"I sought answers to explain Luke's struggles for years following his accident," says Galloway. "Time and time again, the professionals we looked to discredited my observations, and Luke and I were both targeted as the source of the problem. Eventually it can be depleting, but through it all you can never quit seeking the truth."
Expect tension within the household. When a child has TBI, it changes the family dynamic. Tensions arise, and relationships are strained as everyone searches for solutions and adjusts to changes in the child's behavior. Galloway's marriage was certainly affected in these ways. She warns that this sort of tension is usually unavoidable and should be expected.
"When professionals fail to make the connection between a blow to your child's head and the changes you report, it causes strife in the family unit," she says. "For instance, as Luke's behavior changed following his accident, my husband seemed to share the doctor's belief that our son was healthy and was simply beginning to push age-related behavioral limits. Before, we had easily been on the same parenting page, but now, as if the changes to Luke weren't bad enough, my husband and I were experiencing our first shift into opposing views."
Galloway says this sort of friction between two parents, who only want the best for their child, is completely understandable. But it is also important for families dealing with TBI to be aware that lack of a correct diagnosis does strain these relationships. It's best to be prepared for this tension and face it with lots of understanding and love.
You and your child will be judged by others. When a child is struggling due to an unidentified TBI, she and her parents are often judged by doctors, teachers, family, and friends. TBI sometimes causes failure to succeed, social unawareness, frustration, and verbal outbursts. People on the outside blame this behavior on bad parenting or assume the child is just being "bratty."
Heartbreakingly, Galloway discovered that many parents encouraged their children to avoid Luke. She shares an analogy about what it's like to face this judgment from other parents.
"Parents with healthy children travel down what I call a 'Main Street,'" says Galloway. "When there is a trauma of any kind, it can toss the family onto an alternate, less-traveled route. Along this more difficult path, parents learn a deeper level of empathy, determination, and hard work. The family still understands the 'Main Street' travelers, because that is the norm. But many travelers on 'Main Street' do not understand the journey of those on that alternate route, because they have not been challenged to think in a different way. They judge by what they know."
You and your child will feel isolated from others, and you may be shunned. When your child has undiagnosed TBI, you both may be excluded and isolated. This comes from the widespread lack of knowledge about TBI and how it manifests.
"When your child shows symptoms that are not easily recognizable or classified, it is a very lonely experience for everyone involved," says Galloway. "No one realizes that your child's behavioral issues are stemming from a brain injury, so they may avoid you and keep their children from befriending your child. In fact, Luke was one of only two children excluded from a middle school graduation party. Incidents like this were, of course, very hurtful for Luke and for us, as his parents."
Other parents may feel uncomfortable being in your world because they worry that the same thing could happen to their child. So instead, they don't associate with you. However, Galloway adds that you may encounter those who are empathic along the way.
"Friends and allies may be few and far between, but they are out there," says Galloway. "And often, you find that they can relate because they too have faced hardships."
Everyone blames everyone. Galloway says blame is plentiful over the course of a TBI challenge. Not only is it normal for parents to find themselves blaming the child (when, of course, it isn't the child's fault), but they also blame each other as the child continues to struggle or fail. Over time, this blame erodes the self-confidence of the child as well as the parents.
"The home should be a place of trust and safety for every family member," says Galloway. "But when physicians and teachers blame the parents for the child's difficulties, the parents begin blaming each other or even the child, and nobody feels safe. The child senses this blame and internalizes it, and without a medical diagnosis to explain the symptoms, the blame cycle deepens. This is understandable, certainly, but I advise parents to fight the urge to place blame. It's healthier to focus on finding the real cause instead of pointing fingers."
You may feel despair and depression. When your child can't get the diagnosis or help that he needs, it's common for despair and depression to eventually set in. As well-respected pediatricians, teachers, and other experts denied that there could be a connection between the blow to Luke's head as a two-year-old and the behavioral, social, and cognitive changes that ensued and worsened, Galloway sank deeper into despair.
"TBI is emotionally draining for both parents and the child, and other siblings," says Galloway. "Though you feel drained and dismayed, you have to keep going. And you do keep going, for the sake of the suffering child and for the family as a whole."
Fear is your constant companion. With no validation or diagnosis following Luke's injury—and therefore no help or treatment—Galloway felt in constant fear for her child's future.
"The emotional journey of a parent worrying over her child's well-being is punctuated with apprehension," says Galloway. "I agonized and worried over how he would survive when I was gone. Would he end up in jail? Or be homeless on the street? The fear of what would become of my son was all-encompassing."
Facing unidentified and untreated TBI as a family is a difficult journey, but Galloway hopes that as awareness about this condition increases, everyone will be a little quicker to listen and slower to dismiss dangerous symptoms. Understanding not only the impact of TBI, but also the emotional toll it takes on affected families, is a crucial step to achieving this awareness.
"When your child has TBI, however you are feeling and coping is valid," concludes Galloway. "Don't let anyone convince you otherwise, because at the end of the day, you are your child's biggest advocate. My hope is that with increased understanding, we can all listen to each other better, and become more understanding and empathic, so all children with TBI can be diagnosed quickly and then receive the help and treatment they need to be as healthy and happy as possible."
Claire Galloway is the author of A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury. She has been advocating for greater awareness of closed-head traumatic brain injury in children since 2008. She has spoken at several brain injury conferences and to students of education. This is her first book. She resides in Virginia with her husband, Mark. For more information, please visit www.acalltomindtbi.com.
About the Book: A Call to Mind: A Story of Undiagnosed Childhood Traumatic Brain Injury (Brandylane Publishers, 2017, ISBN: 978-1-939-93094-1, $16.95, www.acalltomindtbi.com) is available at bookstores nationwide and from all major online booksellers.