What are TBIs?
TBIs are sudden acquired injuries to the brain occurring after a period of normal development. (i.e., not congenital, genetic, or birth injuries). Most often a TBI is caused by an outside force ( a fall, a blow, severe jerking, or something enters the brain like a depressed skull fracture, or bullet).
Sometimes the acquired injury to the brain can be caused by an internal event like an infection (e.g., encephalitis or meningitis), metabolic disorders (e.g., a diabetic coma), or too little blood flow to the brain (e.g., near-drowning, strangulation, stroke). The functioning of the brain is disrupted, either temporarily (e.g., disrupted biochemical activities as seen in concussion or mild TBI), and/or structurally injured (e.g., bleeding, swelling, too little blood flow, or tearing of the axons that make up most of the brain), as seen in moderate to severe TBIs that can result in long-term dysfunction.
The brain is protected by the skull bones, three layers of membranes inside, and it "floats" in water (cerebral spinal fluid). Therefore, many injuries to the head that produce outside bumps and bruises or bleeding cuts, do not result in a TBI. It is also true that someone can have a TBI due to violent movement without any outward marks (e.g., Shaken Baby Syndrome, diffuse axonal injury).
The causes of TBIs vary with age. For example, in infants most injuries occur from accidental dropping or physical abuse (e.g., "Shaken Baby Syndrome"). Toddlers tend to be injured in falls and motor vehicle accidents. Children in elementary school are most often injured in bicycle and motor vehicle accidents, falls, and during recreation and sports. Teenagers and young adults have a high rate of motor vehicle accidents as a driver or passenger, and are also often injured in assaults and sports.
Traumatic brain injuries (TBIs) in children and adolescents are not rare occurrences. It has been estimated that over a million children/adolescents in the US will get a brain injury, ranging anywhere from a mild concussion to a severe TBI, each year. One in 500 children will get a TBI severe enough to be hospitalized each year. Fortunately, most TBIs that occur are of "mild" severity (e.g., concussions or mild TBI).
Every child and adolescent was unique before his or her injury, and every TBI injury is different in severity, location, and short and long-term effects. Making the diagnosis that a TBI has, or has not, occurred is complex. Most children/adolescents will be initially seen by a primary care physician (PCP), pediatrician, or at an emergency department.
There are brief screening tools used within the first 24 hours to see if a TBI has occurred, and if so, how severe (e.g., Glasgow Coma Scale score, GCS). If there is documented true loss of consciousness (LOC) or coma, a TBI has clearly occurred. Milder injuries can occur without LOC, if there are cognitive symptoms such as disorientation, and physical symptoms like vomiting, etc. Medical tests may be done such as CT and MRI scans of the brain. These show pictures of brain structures and usually pick up large and/or more severe injuries (e.g., scattered bleeding, blood clots, brain swelling and shifting).
Biochemical disruptions to brain functioning do not usually show on these types of tests. Some specialized brain scans (e.g., diffusion weighted MRI, fMRI, SPECT , etc.), can be more sensitive and can provide some information about brain functioning. EEGs measure the electrical currents of the functioning brain.
The child/adolescent may also be seen by a neurologist, who is a medical doctor (MD) specializing in the nervous system including the brain. Neurological evaluations are brief office visits that assess primarily reflexes, motor and sensory functions, and some simple cognitive abilities. A neurologist may order tests (e.g., CT, MRI, EEG), and may prescribe medication to help with symptoms (e.g., for seizures, headaches, sleep, anxiety, depression, behavioral control, etc.).
A physiatrist is an MD who specializes in rehabilitation of injuries including brain injuries. A physiatrist usually does a medical examination similar to that done by a neurologist. In cases of more severe TBIs, the physiatrist is likely to coordinate a treatment plan involving therapies as needed (e.g., physical, occupational, speech and language, counseling, etc.), longer-term follow-up and coordination with the family and school staff.
A neuropsychologist is a licensed psychologist, who has additional specific training in brain-behavior functioning. It is important to be sure that a neuropsychologist has experience and training specifically working with children/adolescents, not only with adults. A neuropsychologist usually does a comprehensive review of pre and post-accident medical, educational and other records, interviews people who know the child/adolescent well (e.g., parents, teachers, etc.), and an extensive assessment of cognitive functioning (e.g., thinking, learning, memory, problem-solving, attention, language abilities, visual-spatial abilities, some motor and sensory abilities, emotional and behavioral functioning, real life adaptive abilities, and sometimes also achievement testing in reading, math, etc.). A neuropsychological evaluation provides detailed information about how the child/adolescent is currently functioning, and any changes in learning style and cognitive abilities. The neuropsychologist should be able to work with the student’s school to set up a return to school plan to help the student succeed. When there has been a moderate or severe TBI, the neuropsychologist may also help the family navigate through the special education process (see more on this below).
It is always a good idea for the family to contact the child/adolescent’s school as soon as possible after a TBI has occurred (even a concussion or mild TBI). The temporary disruptions caused by a concussion or mild TBI can have a major impact on a student trying to return to a full course load of classes while still feeling symptoms. A planned return to school with short-term accommodations is usually helpful and can prevent unnecessary problems from developing (e.g., behavioral, depression, decline in school performance, etc.). The public school will usually become the child /adolescent’s "rehabilitation team" after a moderate or severe TBI, and can provide many if not all of the therapies and other non-medical services that may be needed through special education if the student is determined to be eligible and in need of services (see more below).
Every child/adolescent was unique before having a concussion or TBI, and every TBI is different in its severity, location, and short and long term effects. So it is not surprising that the symptoms, course of recovery, and long-term impact of a TBI will be different for each child/adolescent. As a general rule, the more severe the initial brain injury, the more likely there may be serious long-term effects. Also, the younger the child at the time of the TBI injury, the more likely there will be disruption to normal development and long-term consequences (see Delayed Consequences" section below). An adult’s brain is fully developed. An adult may lose or disrupt some cognitive abilities after a TBI, and then show gradual improvements back towards his or her prior levels of functioning.
The child/adolescent’s brain is more vulnerable to injury during continued development than an adult’s brain with the same severity of injury. The brain is not normally fully developed until early adulthood (and the "executive" frontal areas of the brain important to judgment, problem-solving, organization, attention and self-control are the last to fully develop). The child/adolescent with a TBI may have his or her continued normal developmental progress disrupted, as well as loss of some prior abilities that complicates the recovery process. Also, a child /adolescent may appear to show a good or even full recovery after a TBI, but deficits may become apparent later on in development when more sophisticated abilities are required (e.g., independent organization and problem-solving, abstract thought, generalization of learning, and at transitions to middle school high school, or independent adult life).
Severity of TBI:
The mildest form of brain injury is a concussion. This involves immediate disruption of the biochemical functioning of the brain, resulting in a combination of transient cognitive (e.g., initially disoriented, slower processing, more difficulty with attention), and physical (headache, nausea, dizzy, difficulty focusing vision, easily fatigued, etc.), symptoms that can last for days or a few weeks. Concussions are common in sports injuries because children/adolescents do not have the physical strength or developed athletic skills that older athletes possess. Prevention through wearing appropriate helmets (e.g., for all bike riding, skate and ski boarding, downhill skiing and jumping, soccer, football, etc.), and proper sports training for appropriate age levels, are very important. Prevention through always wearing seatbelts, driving responsibly, and avoiding risky situations, can prevent many concussions and more serious TBIs in adolescents and young adults.
It is very important that a child/adolescent suspected of having a possible sports concussion have an immediate side-lines assessment, to determine if a concussion or a more serious TBI has occurred. If there are any signs of a concussion (e.g., any loss of consciousness, disorientation, "dazed", or physical symptoms), the student should remain out of the game. Ongoing assessments should also be done to determine when it may be safe to return to future games. Children and young adolescents are especially vulnerable to serious (even catastrophic including death) consequences, if multiple concussions occur within a short time frame before the brain has fully returned to normal functioning (i.e., "Second Impact Syndrome"). Younger children and adolescents may also take a longer time to fully recover from a single concussion, than older adolescents and adults. Multiple concussions over time can produce cumulative effects. Most children/adolescents are expected to fully recover from a single concussion within days or weeks, although some may have symptoms lasting for several months. Permanent damage is not expected from a single uncomplicated concussion, as the underlying injury is temporary biochemical disruption.
The terms concussion and mild TBI are sometimes used interchangeably. This can lead to confusion about expectations. There is a continuum of severity of brain injuries ranging from "normal" state to mild and moderate concussions, mild TBIs, moderate TBIs, severe TBIs, profound TBIs (e.g., persistent vegetative state), and death.
Mild TBIs usually involve periods of loss of consciousness (a few minutes to about 30 minutes), prolonged disorientation (minutes to hours), a period of "post-traumatic amnesia" (PTA, a short period of time beginning immediately after the injury when he or she is not able to remember new information about events occurring even though awake and conversant), and multiple physical symptoms (e.g., vomiting, dizziness requiring laying down, vision disturbance, incoordination, etc.). Brain CT and MRIs usually do not show structural changes in the brain with a mild TBI. A child/adolescent with a medically diagnosed mild TBI is often kept in the hospital overnight for observation to be sure that they do not develop serious complications (e.g., brain swelling, bleeding, etc.). It may take up to several months for a child/adolescent with a mild TBI to return to full normal functioning, but serious or permanent cognitive changes are not expected. It is wise to provide close monitoring at school and accommodations as needed during the recovery period. He or she should also not return to contact sports (e.g., football, soccer, etc.), or sports and recreation with a high risk of getting another concussion (e.g., skiing, skate boarding, off-road vehicle or snowmobile, etc.), for at least several months and until all symptoms have resolved.
Moderate TBIs usually involve a significant loss of consciousness and/or a period of prolonged disorientation and PTA lasting hours or days. Moderate TBIs are more likely to show structural injuries on CT and MRI scans (e.g., spots of bleeding, shearing of axons, brain contusions, swelling). A child/adolescent with a moderate TBI will usually be hospitalized for at least several days for monitoring and possible treatment (e.g., medications to reduce swelling, draining of excess fluids or blood from around the brain, etc.). He or she may be discharged from the acute care hospital after only a few days once the danger of complications has passed and the child is able to walk. Inpatient rehabilitation facilities usually require that the child/adolescent have persistent physical difficulties (e.g., not able to walk unassisted, or not able to do activities of daily living like feeding, dressing, etc.) to be admitted. However, hospital discharge does not mean that he or she is "back to normal". Out-patient therapies, close supervision, carefully monitored return to daily activities, and a school re-entry plan will usually be necessary. Adolescents with a moderate TBI are often quite difficult to restrict and supervise during this initial recovery. The adolescent may insist that he or she is "fine" and doesn’t need restrictions. This is due to the injured brain (especially the executive systems of the brain), not giving him or her accurate feedback about the cognitive, behavioral and physical changes that may be apparent to everyone else. In addition, adolescents generally lack of awareness of risks and needs for limits, and desire to be and do things like everyone else. Nonetheless, close supervision and restriction of social and recreational activities (including absolute avoidance of any alcohol or street drugs), are crucial during the recovery period after a moderate or severe TBI to avoid unnecessary secondary problems, as well as to avoid re-injury.
The child/adolescent who has a moderate TBI may find that he or she learns differently than before the injury, and may now need to study longer and harder. Processing of information may be slower, he or she can become easily overloaded and overwhelmed, disorganized, easily fatigued, emotional and "disinhibited" (say or do things that are inappropriate), and have difficulty interacting with friends. If the student is aware of changes, he or she may become frustrated, angry, and/or depressed. An adolescent may feel that having special education services is a fate worse than death. However, having a 504 plan of accommodations, or being found eligible for and in need of special education, can provide the gradual transition plan and wide-ranging services that may be needed for a successful return to school. "Special education" does not need to mean separate classes; it can provide individualized teaching and supports beyond mainstreamed classes, therapies through school-based staff, a reduced course load and/or shortened school day, alternative ways of satisfying required credits, and alternative exams, etc. Frequent monitoring of the student’s recovery and needs can allow for flexible changes of the student’s educational plan.
Severe to Profound TBIs are life threatening medical injuries. The child/adolescent who has such an injury will likely initially be in an intensive care unit, and may be on life support until the brain is able resume the basic functions of breathing and purposeful movements. A child/adolescent is considered to be in a "coma" when they have a GCS score of 8 or less (out of a possible 15), and he or she is not consistently able to respond to very simple commands (e.g., ("squeeze my hand", "open your eyes"), and is not making purposeful movements (may make random or non-functional movements). CT or MRI scans of the brain will usually show structural changes in the brain. Neurosurgery may be needed to reduce pressure on the brain or to stop bleeding within the brain, etc. How long a person remains in a coma is highly variable. If the child/adolescent remains in a coma on life support for prolonged periods of time, the brain injury is severe, but he or she may still show gradual improvements and may make a surprisingly good recovery (although he or she may have some permanent cognitive and/or physical limitations). In some very severe brain injuries, the child/adolescent may not show significant recovery and may remain in a "persistent vegetative state" (i.e., although his or her eyes may be open and moving and arms and legs may move, he or she does not follow commands, appear to be able to process information, or functionally interact with others).
All children and adolescents who have not yet completed high school and have severe to profound TBIs will likely need long-term therapies, a rehabilitation plan, and should be evaluated for special education eligibility and need (even if previously had dropped out of school but are not yet 21 years of age). Special education services can be coordinated with the medical therapies and treatments. Special education services can possibly be delivered at home if necessary. The public school system will often become the rehabilitation service provider for children/adolescents with severe TBIs. It is best to contact your child/adolescent’s school soon after the brain injury occurs, even if he or she is not yet ready to begin the transition back to school. The process of determining special education eligibility and need, or for creating a 504 plan of accommodations, takes time, records and doctor’s letters will need to be gotten, and even additional para-educational staff may need to be hired. Keep the school updated as your child progresses in his or her recovery. It is much easier to delete services that turn out not needed, than to realize that they will be needed, but are not yet available when needed.
The special education category of TBI was first added in 1997. The Vermont Department of Education’s special education definition of a TBI is more inclusive than the Federal definition. The Vermont special education definition of TBI is:
"Traumatic brain injury shall be an injury to the brain caused by an external physical force or by an internal occurrence such as a stroke or aneurysm resulting in total or partial functional disability or psychosocial maladjustment. The Evaluation and Planning Team shall obtain an opinion of a licensed physician as to the existence of a traumatic brain injury and its effect on the student’s ability to function, according to the following criteria:
The condition includes open or closed head injuries and has resulted in impairments in one or more areas, including cognition; language; memory; attention; reasoning; abstract thinking; judgment; problem-solving; sensory, perceptual and motor abilities; psychosocial behavior; physical functions; information processing; and, speech."
The condition does not include brain injuries that are congenital or degenerative, or brain injuries induced by birth trauma." (The bolded phrase is the major Vermont addition).
The special education category of TBI was added because it was recognized that a student who acquires a TBI often did not meet the eligibility and need criteria of the other categories such as learning disability, due to the sudden acquired nature of TBI effecting new future learning. The student with the TBI may not initially show a "discrepancy" between intelligence and achievement (due to retained past learned abilities). The most common types of cognitive problems the student will have after a TBI are new learning and memory, information processing, attention, organization, receptive and expressive language, emotional and behavioral control, and social interactions. Any or all of these problems can significantly interfere with current and future educational progress.
Besides meeting the definition of TBI for special education purposes, the student also needs to show adverse effect on his or her educational progress. The more severe the TBI injury, the more obvious the changes in the student, and their adverse effect. The results of a neuropsychological evaluation are often helpful to demonstrate the adverse effects of the TBI on the student’s ability to make current/future educational progress. Traditional psycho-educational evaluations (usually consisting of intelligence and achievement tests and behavioral rating scales), may not detect many of the specific cognitive processing problems the student with a TBI may have. By being able to qualify for and receive special education services as soon as the child/adolescent returns to school following the TBI injury, many secondary negative effects on current and future educational progress can be avoided or minimized.
The process to begin a "Comprehensive Evaluation for Special Education Eligibility and Need" can be requested by the parents. There is usually a special educator within the student’s school and this is a good place to start. The parents can also directly contact the school district’s Special Education Coordinator. An "Evaluation Planning Team" (EPT) will be formed to discuss whether and what evaluations need to be done. The parents are important members of the EPT. Sometimes a school district will want to do their own evaluation before agreeing to pay for an additional outside neuropsychological evaluation. Parents should be told exactly who will do the evaluation, and exactly what tests and procedures will be done. If the parents do not agree with the results of the school district’s evaluation and/or the EPTs special education decision, they have the right to request an "Independent Evaluation at School Expense".
If the student is not found to meet the criteria for special education including adverse effect, a referral may be made to the school’s "504 Team" (Americans with Disabilities Act). To qualify for a 504 Plan of accommodations (rather than individualized instruction and therapies at school expense), a student only needs to have a disability. A 504 Plan can be very useful for initial return to school for students with concussions or mild TBIs, and can also be put in place while a comprehensive special education evaluation is in progress. Sometimes students with TBI will initially need special education services, but may later transition to only need a 504 Plan of accommodations as they demonstrate further recovery.
If a student is found eligible for and in need of special education services by the EPT, additional meetings will be scheduled to determine the exact needs of the student (e.g., individualized instruction, paraeducational assistant, therapies, schedule modifications, accommodations, etc.). The plan developed is an Individualized Educational Plan (IEP). IEPs are rewritten at least once per year (but changes may be needed more frequently for a student with a TBI as the student’s status and needs are expected to continue to change over time). All students in special education are re-evaluated at least every three years (triennial re-evaluation). Students with TBIs may need more frequent re-evaluations, again due to the expected recovery and changing abilities and needs over time.
When a TBI occurs in childhood or adolescence, the transition to the world of adult independence, work and/or further education, may be negatively affected. The student, who appeared to do well within the structure of public education and with parent supports and monitoring, may not have developed the necessary independence skills needed to live alone, manage life at college away from home, or to obtain and hold employment. It is important to frequently reassess such adaptive real life skills. It may be necessary to specifically teach and generalize these real life skills within actual community settings.
It is important to begin evaluating adaptive, vocational or further education skills early, several years before the end of high school. Students in special education can continue to receive special education services until age 22 years (if needed, and can include goals of adult life skills, vocational, supported job trials etc.). If the student has an IEP for special education, these areas should be some of the IEP goals. Whether or not the student has qualified for special education services, the Vermont State "Division of Vocational Rehabilitation" (VR) provides services for adolescents and adults who have any type of disability that can negatively affect the ability to work. Most high schools have a VR counselor assigned to work with IEP teams for each student with a disability. It is recommended that the parents ask for the VR counselor to become an active part of the student’s educational team not later than age 16. If the student does not have special education services, the parent can directly contact their local VR office and apply for VR services. There are also additional VR resources and programs specifically for adolescents and adults who have a TBI (both during acute rehabilitation, long-term resources for those with very severe TBIs, and much later for vocationally related services).
In some cases, the adolescent/young adult who has permanent significant cognitive deficits due to a TBI may also qualify for intensive community services through Adult Developmental Disabilities. Community Mental Health services may also be part of some adolescent/young adults "wrap-around" plan of home, school, and community services. Information on how to apply for these services can be found through the adolescent’s school.
Nearly all children/adolescents will show a gradual pattern of improvements and recovery following the TBI. The course, time-frame, and pattern of recovery from the TBI will be different for every child/adolescent. However, it is important to remember that a child/adolescent brain is a "work in progress". A TBI can disrupt ongoing normal development. Some results of this may not become apparent until many years later, when greater demands are expected from the student. For example, if a pre-school child has a TBI, he or she may appear to fully recover but may later show difficulty learning to read or focusing attention when the begin public school. A child who has a TBI during second grade may appear to fully recover, but later show difficulty when they move to middle school and are expected to self-organize, change between classes and teachers, write lengthy papers, etc. A student who has a TBI during seventh grade, may do well until they reach high school and are expected to generalize learning, and use abstract thought and independent judgment. It is possible that these later appearing difficulties may be related to the earlier TBI. A neuropsychological evaluation done many years after a TBI will determine whether the student has fallen behind peers in specific areas of normal development (especially in memory and new learning and executive abilities). When the student’s profile of learning strengths and weaknesses is known it is be possible to structure the educational program to meet those needs.
The child or adolescent with a TBI and the family need not try to handle all problems alone. The Vermont BIA (877-856-1772) and the national Brain Injury Association (www.biausa.org ) can provide wide ranging information and assistance. The following resources may also help:
Vermont Agency of Education, Special Education Program (802) 479- 1145
Vermont Family Network (800) 800- 4005 vermontfamilynetwork.org
Vermont Center for Independent Living (800) 639- 1572 vcil.org
Vermont Adaptive Ski and Sports (802) 786- 4991 vermontadaptive.org
Vermont Division of Vocational Rehabilitation, TBI Program (866) 879- 6757 vermont.gov/services/tbi-program/