The Silent Epidemic
By Lynda C. Van Kuren
Published in CEC Today, Vol. 7, No. 7, March 2001
If you haven’t already had a child with traumatic brain injury (TBI) in your classes, chances are you will before you end your teaching career. Approximately 1 million children and adolescents receive a head injury each year. Of these injuries, 16,000 – 20,000 will be serious enough to cause lasting effects, and one in 500 will be severe enough to cause hospitalization. If the child’s injury requires hospitalization, it is likely that he or she will require special education services. Children who have less severe head injuries may need only accommodations or services provided by a Section 504 plan.
Because the effects of traumatic brain injury often resemble that of other disabilities such as a learning disability, attention deficit disorder, behavior disorder, or mild mental retardation, children with traumatic brain disorder are often misdiagnosed. Or, they may not be diagnosed at all. This, combined with the high but often unrecognized, number of children with traumatic brain disorder, gives rise to the disability’s alternate name — the “silent epidemic.”
Given the special needs of children with TBI, the silence around traumatic brain injury must be broken if they are to progress academically and socially. Many of the learning strategies special educators use with children with other disabilities are effective for these children as well. But, children with brain trauma also require special assessment strategies, behavior interventions, and understanding if they are to succeed.
Definition and causes of TBI
TBI is defined in the Individuals with Disabilities Education Act as an “injury to the brain caused by an external force, resulting in total or partial functional disability or psychosocial impairment, or both, that adversely affects a child’s educational performance.” The term applies to both open and closed head injuries. The most common cause of TBI is car accidents. Other causes include sports accidents, falls, and physical abuse.
Common problems of children with TBI
Children who have TBI vary tremendously in their needs, depending on the location and severity of the injury. Most mild injuries, such as mild concussions, are usually not treated and occur quite frequently. These types of injuries often have minor or short-term effects on a child’s performance in school. Other, more severe injuries can have long-lasting effects on a child’s functioning.
Many children with TBI experience some type of difficulty after the injury. Problems can occur in cognitive functioning, physical abilities, communication, and/or social interactions or behavior. The most common area affected by TBI is memory, especially memory for new information, says Janet Tyler, Director of the Neurologic Disabilities Support Project, Kansas State Department of Education. In addition, children with TBI may be much more distractible than other children.
The brain’s executive function processes also are often affected. The executive function processes include skills such as problem-solving, organization, recognizing priorities, planning, acting to reach a goal, and recognition of attainment and evaluation. With executive function brain disorder, the child may miss due dates and appointments, complete homework but regularly forget to turn it in, have difficulty problem solving, processing old information in a new way or drawing relationships between old and new information, learning new information, and/or changing from one task to another.
Learning can be further impeded for children with TBI because the brain becomes overwhelmed. The “capacity of working memory becomes overloaded by the multiplicity of deficits (the breakdown of multiple systems through injury) and the consequent need to relearn a number of previously automatic or near automatic functions simultaneously,” says Dennis Williams in Traumatic Brain Injury: When Children Return to School.
Behavior also is often impacted by TBI. This can result from various causes. First, these children remember skills, ability, and knowledge they used to have. Dealing with their loss is frustrating, and children with TBI can become agitated, aggressive, argumentative, withdrawn, and/or depressed. In addition, TBI can cause the loss or impairment of impulse control. The child can even lose the ability to discern appropriate behavior.
Educators should further be aware that children with TBI may experience fatigue, especially when they first return to school, and many are subject to seizures and may be on medication.
How TBI differs from other disabilities
The biggest distinction between children with TBI and children with other disabilities is that the injury — and subsequent disability — occurs over night, says Carol Wong, education evaluation specialist, Mulpnomah Education Service District. With other cognitive disabilities, the child and his or her parents have had some time to deal with it emotionally and to learn how to manage the disability.
“These kids were ‘normal,’ and over night they have a changed brain, have altered ways of acquiring information,” says Tyler. “It is quite an adjustment to realize one’s brain is not functioning as it was and that one must do things differently.”
Not only does this take a tremendous toll on the child and his or her family, it affects everyone involved — including educators! It can be as difficult for teachers to change their expectations for a child who has experienced brain trauma as it is for others, especially if the child looks fine physically.
However, in some cases, particularly if the child suffered the injury at an early age, the educational effects of TBI may not show up immediately. The child may not experience problems in school until middle or high school. Then, as the child is asked to perform higher-level thinking skills and more complex tasks, he or she may experience problems academically and start to lag behind peers. The child may also start to experience difficulties socially, as he or she has difficulty meeting increased demands on time and attention.
The problem is complicated by the fact that no one may link the child’s learning problems to the injury. The medical profession may have given the child a clean bill of health physically without being aware of the ways the injury could affect the child educationally at a later date.
A third area that distinguishes children with TBI is that their knowledge can be scattered, leaving the child with wide gaps in his or her learning. Some higher-level skills will remain intact but not some lower-level skills, says Tyler.
A teacher can see the “Swiss cheese effect,” adds Wong. “A student can do algebra but can’t remember coin value.”
Finally, children with TBI can make rapid advances in their academic skills and knowledge, particularly in the first six months to a year after the injury. A school may have an IEP in place when the child returns to school, and within three weeks or a month it will need major changes. Children with TBI can also plateau for a time and then make major jumps in learning.
Often the traditional assessments performed for a child with a disability will be inadequate for students recovering from TBI. First, many consider an evaluation by a neuropsychologist vital. Neuropsychologists specialize in brain functioning and can give more comprehensive information about how the injury will affect the child in the classroom than a school psychologist, according to Tyler. For example, neuropsychologists will provide information on the child’s ability to problem-solve, to learn on repeated trials, how he or she will do if distractions are present, and if the child can perform motor or processing tasks easily.
This information is combined with that of other rehabilitation professionals (occupational, physical, and speech therapists), nurses, teachers, and social workers. Input from the child’s parents is also critical, as they know how the child performed before the accident and of any difficulties the child is experiencing now.
Also, assessments must be done much more frequently for children with TBI. Some recommend yearly testing. Children who have been recently injured may need to be tested even more frequently. In just 3-6 months, a child with TBI may perform at a completely different level than when they were tested at the hospital, says Tyler. To determine just how frequently to test, educators must stay abreast of how rapidly the child is changing. The teacher is often the one to monitor the child’s progress.
In addition, educators must be aware that formal assessments for a child with TBI can provide misleading information. For instance, the child may score well on a standardized assessment but be unable to perform in the classroom.
Developing an education program for children with TBI
Though many of the instructional strategies special educators already use will apply to their students with TBI, they will need to take some additional steps for these students. For example, because of the complexity of treatment for these children and the rapid changes they make physically and educationally, it is essential that a case manager oversee the child’s education program. The case manager will need to ensure regular communication occurs between the child’s parents, medical personnel including the neurologist and rehabilitation personnel, any outside therapists the child is seeing, social workers, and school staff. The case manager will also monitor the child’s academic and social progress and ensure the IEP team meets and updates the IEP as needed.
As mentioned above, the educational needs of child with TBI will change quickly after the injury. Therefore, the child’s IEP goals and objectives must be developed initially for achievement over short periods of time, 4-6 weeks, rather than six months to a year as is traditionally done. Likewise, the child may need more frequent assessments than other children with disabilities.
When working with children with TBI, the special education teachers’ primary task is cognitive rehabilitation. As with their other students, teachers will work to improve the child’s deficits and teach the child how to compensate for skills he or she may never regain. Thus, the teacher may need to help the child re-learn how to do things that came naturally before the accident, such as how to gather information from a passage or take a test. For skills the child will never recover, such as memory, the teacher will need to teach the child coping mechanisms, such as using a planner, a tape recorder, or other organizational aid.
When helping children with TBI regain social skills, teachers may need to adapt traditional behavior modification techniques. Because the child may not have memory skills and/or lack the ability to determine cause and effect, any behavior modification plan must be concrete and short-term, recommends Tyler. For example, the child may have lost the knowledge that one is to be quiet in a library. To teach that behavior, the teacher must rehearse the behavior with the child, talk about it, and provide clear guidelines as to what is expected and the consequences of incorrect behavior.
“The teacher will need to spend more time on antecedents verses consequences if the child does not cooperate,” says Tyler. “The child with TBI often will have impulse control problems. It takes concentrated, intensive effort (for the child) to learn behavior.”
Another factor educators must consider when working with students with TBI is their physical protection. Whether because of loss of balance, impaired judgment, or an increase in impulsive behavior, these children are prone to additional head injuries. Therefore, teachers will need to closely supervise these children on the playground, may need to arrange for them to change classes when the halls are less crowded, or, if conditions warrant, to wear a helmet at school.
Finally, collaborating with the parents of a child with TBI is vital. They know how the child functioned before and after the accident, and they can provide valuable information on the child’s mental state.
How do I identify a child with TBI?
If you think you know a student with TBI, you should check the student’s history. If the student’s medical records don’t mention a brain injury, ask his or her parents. They may remember that the child took a hard fall as a toddler, which could be affecting the child’s learning progress now. The parents and teacher should see if the child’s learning patterns changed after the accident. Information about a child’s head injury should be passed on from year to year along with educational strategies that have proven successful.
By Jeanne E. Dise-Lewis, Ph.D., Margaret Lohr Calvery, Ph.D. and Hal C. Lewis, Ph.D.
Manual for educators on students with acquired brain injuries.