"She is a beautiful 4-year-old. She was in the hospital for several months and has a severe brain injury. She can't speak and has difficulty maintaining balance for sitting. She is more like a 2-year-old than a 4-year-old. We know there are many challenges before us in getting all the services she will need throughout her life."
—Jessica's parents, who found their daughter comatose in her crib
at the age of 3 weeks, injured while in the care of her nanny.
"I have headaches and can't concentrate in school. I am a little impatient with my friends, and they don't call like they used to. Maybe I am just over-stressed with sports and schoolwork?"
—Kiesha, 17, a varsity volleyball player, one year after sustaining a concussion
when she hit her head on the gym floor and was returned to play in that game
against the recommendation of the athletic trainer.
"Our son is now 11 and has begun to do poorly in school. We can't figure out what is bothering him. He was a great student until third grade, but he just can't keep up anymore. His friends are a little on the wild side and influence him to do bad things. He is physically fine. Maybe he should play sports and get rid of some of this energy."
—Matthew's parents, discussing academic and behavioral changes in their son,
who was hit by a car when he was 8 years old. Matthew was unconscious for 24 hours,
hospitalized for three days, and discharged home with no further recommendations.
"I served in Iraq. I was injured in a blast and have been home for 11 months. I was discharged and tried working at my old job as a manager at a local pizza shop. But I just could not take the chaos and noise there. I am now enrolled in a local university. Keeping organized for classes, recalling assignments, and listening to lectures is really difficult. Maybe I need counseling for post-traumatic stress disorder. But I was told I only have a minor leg injury and really don't qualify for any service-related assistance. There doesn't seem to be anyone here in the community who knows what I should do."
—Marvin, a 21-year-old who was injured in Iraq
and now is considering dropping out of college.
These quotes—from real families and individuals dealing with traumatic brain injury (TBI)—illustrate the spectrum of traumatic brain injuries and the resulting complexities. The families' words also convey frustrations that can result from a lack of awareness about TBI and its implications for children, adolescents, and young adults, as brain development continues into their 20s.
Some common factors in these experiences are relevant to speech-language pathologists who may be called upon to treat communication difficulties in children and adolescents with TBI:
- The effects of a TBI in childhood are not fully realized right away and, in fact, new challenges can emerge after the individual has become an adult.
- The full scope of cognitive-communicative issues that results from a TBI often are not recognized in school and community environments, and sometimes, not even at home.
- There is a lack of recognition of the full scope of cognitive and communication issues and their impact on lifelong learning and living; as a result, there are significant gaps in the available research, especially with respect to evidence-based methods that are likely to improve outcomes for this population.
- Considerable information exists based on expert opinion about how practitioners and caregivers can support cognition and communication throughout development, but this information is not widely disseminated.
Although professionals often discuss and present on these concerns, positive strides have been made in the past decade and sufficient information exists to guide young TBI patients, their families, and the clinicians who treat them. These advances include increased information about cognitive communication after TBI, research on post-TBI developmental issues, and resources for best practice.
Cognitive communication is the ability to use language and underlying skills such as attention, memory, self-awareness, organization, and problem-solving skills to communicate effectively. Cognitive communication combines thinking skills with language. Language skills may appear to have returned after brain injury, particularly in nonstressful situations. However, when the child most needs to communicate at home, in school, and in the community, the spontaneous and unpredictable nature of communication demands can result in decreased language performance. Changes are most likely to be seen at school under the pressures of time, grades, assignments, the struggle to keep up with curricular requirements, and social pragmatic interactions (DePompei & Blosser, 2003).
The entire spectrum of TBI—from mild through severe injuries—can have an effect on cognitive-communication issues and the complex academic learning and social interactions that can be involved.
A history of a mild brain injury is considered a significant factor that may preclude an athlete from returning to play and may necessitate academic accommodations. The effects of moderate injuries typically are better understood as causing academic struggles as well as an inability to develop adequate social skills. Individuals with severe injuries uniformly receive specialized accommodations in school and community environments within the special education category of TBI.
Strategic learning is essential for success at all educational and social levels and often does not develop properly in students with TBI. Strategic learning, an important function that underlies the brain's capacity to learn, is the ability to extract important information while inhibiting the unimportant features of that information. When a student is presented with a new learning task, the student's ability to identify meaningful information, generalize or abstract this information, and store it for future use may be impaired. Thus, this student may store details related to less important information and be unable to recall the gist of the new learning task efficiently or successfully. Language and cognitive communicative difficulties are often at the root of these problems and treatment is usually indicated (Blosser & DePompei, 2003; Chapman et al., 1999).
Receptive language skills also may be affected and the student may appear not to hear well. In many circumstances, a hearing assessment reveals normal hearing but delayed auditory-processing capacities. The student who may have difficulty processing what is said or written may ask for multiple repetitions, have poor vocabulary recognition, and have difficulty following instructions or remembering what was said.
Certain situations such as blast trauma, however, can result in impaired hearing acuity. Therefore, a hearing assessment to rule out or identify a hearing loss should be completed when any receptive language skill is questioned.
Developmental stages and challenges after TBI can be overlooked because of the erroneous belief that a child who "looks okay" must "be okay." Therefore, if an educational, behavioral, or social problem emerges several years after an injury, the link between observed problems and a past TBI often is overlooked (Chapman et al., 1999; Yeates & Taylor, 2006; Turkstra et al., 2008).
Unlike TBI in an adult, an injury to a child's brain affects an organ that is still developing. It is often believed that an immature brain may be more plastic or resilient, allowing children to "bounce back" more easily after a TBI. However, recent research demonstrates that the younger a child at the time of injury, the greater the possibility of long-term developmental challenges (Yeates & Taylor, 2006; Turkstra et al., 2008; Babikian & Asarnow, 2009; Hawley et al., 2004).
The full impact of an injury to a young brain can become evident over time as the brain fails to mature at the same rate as the child's physical growth and development. Young children's cognitive impairments may not be obvious immediately following an injury, but become apparent as the child gets older and faces increasing expectations for new learning and independent, socially appropriate behavior. For example, Chapman, Gamino, and Cook (2009) state that many youths who have experienced a TBI recover to near-normal levels in early-developing, basic cognitive functions such as memory and vocabulary acquisition. However, youths with TBI often are found to have decreased academic and social performance that worsens through adolescence; specific reasons for this performance decline are unclear.
Chapman (2006) and Gamino et al. (2009) indicated that TBI in childhood can be followed by a significant decrease in cognitive, social, or behavioral skills at the time of injury and also by a later "stall" (possibly years later) during which failure to develop cognitive, behavioral, or social skills affects learning and the ability to maintain friends and jobs. Figure 1 [PDF] outlines these potential times—immediate and delayed—for loss of learning and social development. Most efforts in rehabilitation focus on the initial dip; few supports are provided for developmental complications—the "stall"—that can occur years later.
Given this delay in TBI effects, a student's cognitive-communication skill development should be followed in the schools and community until high school graduation. These periodic checks are essential to determine if the student's language learning is sufficient in all developmental stages. The sidebar on p. 18 offers a suggested starting place for following the cognitive-communicative development of these students.
Resources and Supports
In the past several years, many organizations, materials, and websites have disseminated information about children and TBI. These resources include:
- Newspapers and magazines.The general public's interest in pediatric TBI has increased with articles and YouTube videos about concussion and sports injuries. Information about returning military personnel and TBI also has increased public awareness about the cognitive-communicative issues that can alter a person's ability to perform in school and the community.
- Journals. Recent issues of Brain Injury Professional, Journal of Head Trauma Rehabilitation, and Neurorehabilitation have focused on pediatrics.
- National agencies and organizations. ASHA, the Brain Injury Association of America, the National Institute on Disability Rehabilitation Research, and the U.S. Health Resources and Services Administration are advocating for the needs of this population, providing information and materials and offering training opportunities.
- Websites. See the sidebar on p. 20 for a list of sites that provide significant amounts of information, training, and intervention materials for pediatric TBI.
- Colleagues. Many professionals share their research and clinical work. Of special interest to SLPs is the website created by the late Mark Ylvisaker, which includes tutorials about underlying processes and methods for analysis, diagnosis, and treatment of cognitive-communicative challenges.
An additional contribution was made by the Sarah Jane Brain Foundation. In January 2009, this foundation brought together 50 researchers, clinicians, and family members and issued a challenge to develop a national plan of care for children, adolescents, and young adults with brain injuries. Within one month, a national Pediatric Acquired Brain Injury Plan (PABI Plan) was created. The PABI Plan outlines seven categories of care for treating brain injuries in children, adolescents, and young adults:
- Acute Phase
- Mild TBI Assessment and Treatment
- Reintegration and Long-term Care
- Adult Transition
- Virtual Center, which provides a family registry and a central location for information and materials about pediatric TBI
The extent and scope of the PABI Plan are ambitious, but several benefits have emerged. PABI offers a comprehensive plan that represents best practices and is endorsed by key researchers and clinicians. The major issues and an aggressive plan to address each one are clearly outlined. As a part of the Successful Outcomes plan, each state has a designated lead center that acts as a model and collaborator in the state and communicates with national partners. States can support the plan because each has a stake in the plan's development, implementation, and benefits. Ideas for funding through federal and state grants are outlined in this document, which can serve to direct and justify future research initiatives. Finally, any organization or agency can use part of this plan to implement its own programs for this population.
The four children and young adults with TBI introduced in the beginning of this article—Jessica, Kiesha, Matthew, and Marvin—were each referred to SLPs who helped them develop cognitive-communicative skills that support them in school and in the community.
Jessica receives multiple therapies in school and has an Individualized Education Program (IEP) that addresses her cognitive-communication challenges. Her SLP reports that she now uses an augmentative and alternative communication device to communicate essential feelings and needs.
Kiesha was referred to a neurologist who diagnosed mild seizure activity and prescribed medication. She receives social-pragmatic language intervention from her SLP, and qualifies for services on a 504 plan (for students who need accommodations, but not specialized instruction). She is considering attending a two-year college this fall. Supports to help her achieve success should be provided by the college's accessibility office and its speech and hearing center.
Matthew was identified for a full assessment and was found to have cognitive-communication challenges based in problems with attention, memory, organization, and expressive language. His IEP includes placement in a regular-education classroom.
Marvin was identified as having cognitive-communication problems with memory, organization, and planning. He is continuing his education at the university with classroom accommodations and supports from the speech and hearing center.
These youngsters received appropriate services, in part because evidence-based information is now available, agencies now advocate for this population and provide well-designed educational materials, and more research is available for professionals who are helping them overcome the short- and long-term effects of TBI.