- Missed instruction
- Poor work completion
- Interpersonal and emotional problems
- Cognitive and academic impairment
What we know:
Missed school days are a risk. One study found that during a six month interval nearly 30% of students with epilepsy missed 5 or more school days. The most common reasons parents give for school absences are: medical appointments, epilepsy related tests, and same-day seizure occurrences. Furthermore, 70% of parents in a similar study said they would permit their child to miss school even on seizure-free days. Students with epilepsy also appear to have an increased risk for depression, and in turn depression itself may prompt still more missed days (such as a depressed student forgoing school).
Research links the following family factors to fewer missed school days: (1) parents who affirm the necessity of regular school attendance, (2) parents who avoid overprotection, (3) families that have successfully adjusted to their child’s disease, and (4) positive family-school relationships.
A second set of factors concerns epilepsy itself. Specifically, one study found that children recently diagnosed with epilepsy (diagnosis less than 4 years ago) missed more school days. The researchers speculate this may result partly from the more intensive medical evaluations and frequent doctor visits that a recent diagnosis necessitates. Additionally, more severe and/or frequent seizures, tonic-clonic seizures (see Medical Facts), and use of anti-epileptic drugs predict more missed school days. On parents’ part, lower educational attainment and limited knowledge about their child’s epilepsy also predicted attendance problems.
Missed school days, however, might be only a small part of the missed instruction picture. Classroom seizures can cause missed learning experiences. In some cases, virtually unnoticeable seizures (see Medical Facts for information regarding different seizure types) occur over 100 times per day. Even if subtle and hard to detect, these seizures can trigger missed directions, slowed seatwork, and derailed multiple-step problem solving. Furthermore, immediately after a seizure (the post-ictal period), students are often transiently confused, hindering comprehension of instructions, constraining learning new material, and limiting memorization. Teachers should recognize that the length of educationally-relevant post-ictal disruption varies from student to student. Also variable is students’ (or their teachers’) receptiveness to instruction after a seizure; one study found that two-thirds of students who seize at school immediately go home.
What to do:
The EdMedKids website suggests that educators consider working with parents on several dimensions that predict good attendance among ill students.
A first step is to emphasize for parents the unequivocal value of their youngster daily coming to and staying at school (unless his/her doctor indicates otherwise). Thus, a student’s individual plan can specify circumstances in which staying home (or going home) is permitted; alternatively, a method might be created for contacting the doctor’s office to okay leaving school on a per situation basis. Such a plan conveys parents’ commit to school attendance and can help circumvent potential parental overprotection, an understandable reaction to a student who might seize at school.
A second step is to enable parents to become informed about epilepsy and, more broadly, to help parents adjust to the reality of their child’s epileptic status. Sites such as the Epilepsy Foundation provide parents with valuable information. For families with limited literacy or limited internet access, learning about epilepsy and its management directly from a school nurse or a health care provider may promote regular attendance.
A third step is to foster home-school communication. Teachers can help by using daily report cards that outline work completion, assignments to be completed, and any medically relevant changes in school behavior (see the Teacher Toolbox for an example of a daily report card). Frequent (doctor-approved) absences suggest that a formal plan for conveying assignments to home or setting up homebound instructional services might be needed. Because intense school avoidance problems can crop up in students with epilepsy, any homebound (or extended absence) arrangement should be approached with circumspection and periodically reviewed to assure that it remains in the student’s best interest.
What we know:
As a group, students with epilepsy score worse on measures of attention, concentration, and verbal short-term (working) memory than classmates without epilepsy. In fact, research documents rates of ADHD three to four times greater (12%-25%) for students with epilepsy than students in general (3%-7%). Other students have slowed information processing. Thus, teachers may note some students with epilepsy who routinely struggle to complete their school work, even when trying to do their best.
Less familiar to teachers are intermittent problems that characterize a few students with epilepsy. Specifically, it appears that working memory and language can be disrupted by very brief (e.g., 3 second) subclinical brain discharges. Research suggests that although these disruptions, termed transitory cognitive impairments (see Medical Facts), are brief and intermittent, they can nonetheless keep students from mastering subject area skills necessary for academic success. What is more, side effects from anti-epileptic drugs (AEDs) and sleep disturbances prompted by nighttime seizures can also hamper work completion and constrain attention via daytime sleepiness and lethargy.
The risk of work incompletion is not equal among all students with epilepsy. Students with poorer seizure control tend to experience more problems. The same is true of those who must take more than one medication (AED) to achieve seizure control. Students with symptomatic epilepsy (see Medical Facts) are especially vulnerable to classroom problems, including inattention and work incompletion. Not surprisingly, problems with depression and anxiety have the potential to compromise classroom performance.
What to do:
Parents and health care providers need to hear from teachers when attention, concentration, memory, lethargy-related, or language problems arise; this is in part because these problems might be AED side effects. EdMedKids suggests that any epilepsy treatment adjustments targeting improved classroom attention or work completion include monitoring the student’s classroom attention (or work completion) before, during, and after treatment adjustments. Feedback to the health care team via school team members such as school nurses, school psychologists, or school counselors, is important in these circumstances. Use of observation checklists when treatment changes are made can help determine if there is a concomitant improvement in attention and work completion (see the Teacher Toolbox for a sample observation checklist).
Interventions that teachers can use (and monitor for effectiveness on a per case basis) include:
- Frequent repetition of material
- Redirection
- Cueing
- Memory learning strategies such as mnemonics
- Extra time for assignments and exams
- Non-timed assessments to measure performance
- Break tasks down into simpler steps
- Provide several brief tests instead of one long one
- Use a recognition format for exams rather than a recall format
- Test for understanding rather than specific facts
When work completion or classroom inattention remains problematic, an OHI or 504 designation may be in order (see Disability Rights). With or without such a designation, using a behavioral consultant or school psychologist to conduct a functional behavioral analysis (often simply called an FBA) may reveal antecedents and consequences associated with effective and ineffective work completion (see the Teacher Toolbox for sample letters requesting assistance). Considerable educational research confirms the utility of FBAs for promoting classroom success, including improved work completion.
Interpersonal and emotional problems
What we know:
It will surprise few teachers that students who seize risk diminished self-esteem and anxiety about being stigmatized. Research, however, suggests that children with epilepsy may perceive their own characteristics and their illness much worse much than others do. Understandably, children with epilepsy risk feeling loss of control and learned helplessness, in part because of the inherent unpredictability of when and where a seizure might appear. Children’s low self-esteem also has been shown to contribute to peer-rejection, age-appropriate activity avoidance, and social isolation. Furthermore, research has shown that low self-esteem predicts poor academic performance. In fact, one study found that students with more frequent seizures and poorer self-concepts were at greatest risk for academic problems.
Besides low self-esteem, children with epilepsy risk a host of related psychological disorders and adjustment problems. For instance, research documents that children with epilepsy are three to six times more likely (21%-60%) to develop psychopathology than the general population (6.6%). Increased rates of anxiety and depression are also linked to childhood epilepsy. Depression appears to be especially problematic, as an estimated one in four children with epilepsy will develop that psychiatric condition. Those who experience actual or perceived stigma, feelings of a loss of control, and negative attitudes about epilepsy appear to be especially depression prone. Needing more than one AED for seizure control (see Medical Facts) is also associated with childhood psychiatric disorder. In addition, overprotective parents of more apt to have a student (with epilepsy) with poor interpersonal adjustment.
There are interpersonal risks, as well. Students with epilepsy appear disproportionately the target of bullying. One recent study confirmed that twice as many children with epilepsy (42%) reported being bullied than healthy controls (21%); children with another illness (chronic kidney disease) encountered no such added risk (18%). Epilepsy’s stigma was also evident in a very large study of U.S. adolescents – three-quarters thought that adolescents with epilepsy were more likely to get bullied, and just one-third would agree to date someone with epilepsy..
What to do:
Teachers who observe a seemingly depressed or extremely anxious student may want to refer to the school psychologist, school counselor, or alert the family who can then access health care or mental health services. If severe depression is suspected, such steps are essential. EdMedKids provides a link to the Substance Abuse and Mental Health Services Administration website, which lists community-based mental health centers across the U.S.
Regarding treatment for clear anxiety or depressive symptoms, cognitive-behavioral therapy, a treatment for depressive symptoms in general populations, has demonstrated effectiveness. Cognitive-behavioral therapy, sometimes used by psychologists or counselors at school or clinic sites, teaches students to identify negative attributions that lead to counterproductive behavior, and replace them with alternative attributions that lead to more effective behavior. Teaching relaxation techniques and coping skills have also been found to be beneficial for improving the self-esteem of children with epilepsy. EdMedKids provides a link to the Association for Behavioral and Cognitive Therapies which summarizes some evidence-supported cognitive-behavioral therapy.
In part because family stress seems to contribute to depression and low self-esteem in children with epilepsy, programs that address family communication and educate parents (and children) about epilepsy have been found effective. Thus, educators working as formal or informal teams may alert families to outside services that can help.
One way for teachers themselves to help is by limiting overprotection at school. Many doctors conclude that students with well-controlled seizures need not skip sports or vigorous physical activity. Still, clinicians usually recommend extra supervision during activities such as swimming and advise against contact sports, such as tackle football. Being allowed to participate in the same activities as peers can lead to better-developed social skills and more self-confidence. Teachers should work with the student’s parents and treatment care team to develop an individual plan for each student with epilepsy. The student’s plan should specify what activities are acceptable for the student to participate in and what safety precautions are needed for specific campus activities.
If there is concern that a seizure might occur in class and engender emotional scars, a preemptory classroom discussion of epilepsy may be advised. This can often be done without identifying a specific student. Any such discussion, however, must be cleared by parent(s)/guardian of the student with epilepsy. If a seizure does occur during class, classmates will likely be frightened and need an explanation of what happened. It seems logical that the social impact on the student experiencing the seizure is reduced by an effective teacher explanation and class-wide discussion. No research, however, exists to substantiate this point. If a teacher (perhaps with the help of a counselor, school psychologist or nurse) conducts a post-seizure explanation, the student with epilepsy should be allowed to choose to participate or go elsewhere. The Epilepsy Classroom website provides comprehensive lesson plans for teaching grades K-12 about epilepsy. EdMedKids also provides a link to a sample letter that can be sent home to parents in anticipation of a class-wide discussion about epilepsy.
Unfortunately, school-based interventions addressing self-confidence, stress reduction, or friendship building still lack empirical support. Nonetheless, school-based counseling services, or accommodations/interventions as part of an IEP’s related services, seem reasonable. This is even more reasonable when baseline and follow-up data are collected to help judge actual improvement on target behaviors (see the Teacher Toolbox for sample monitoring forms).
Cognitive and academic impairment
What we know:
Especially regarding cognition and learning the precise nature of a student’s epilepsy matters. As a group, children with epilepsy fare worse than children with other chronic illnesses. But research shows that much of the cognitive and academic risks occur among children with symptomatic epilepsy (who have another brain-related diagnosis) rather than those with idiopathic (epilepsy free of other brain-related diagnoses).
There are three main areas of risk for students with epilepsy:
1. General cognitive development (i.e., IQ)
2. Specific cognitive development (e.g., language or memory)
3. Academics themselves (e.g., reading and math skills; science or geography knowledge)
Regarding general cognitive development, many children with epilepsy have IQs in the normal range but some research finds the entire distribution of IQs shifted downward compared to students in general. Some children with intellectual disability also have epilepsy, but in these cases another underlying condition (e.g., a genetic or traumatic cause) rather than epilepsy per se largely explains the cognitive delay. That is, children with symptomatic epilepsy are at an increased risk for intellectual disability.
Regarding specific cognitive development, the type of epilepsy and the brain location of any particular seizure focus can matter. Students with partial seizures involving the temporal lobes appear to be especially at risk for delimited and potentially important cognitive effects. For example, because portions of the temporal lobes support consolidation of memories, a temporal lobe focus sometimes predicts problems memorizing factual material or subsequent recalling of specific facts. Epilepsy affecting other portions of the temporal lobes may also be associated with understanding and using language. As another example, a generalized seizure resulting from a severe traumatic injury to the frontal lobes might be associated with executive and attention problems.
Regarding academics skills, several factors appear to contribute to the risk. One of these is greater frequency of seizure occurrence. Positively, one research study demonstrated that students who had infrequent seizures enjoyed achievement comparable to national norms. Also encouraging is the research finding that when symptoms improve, academics also improve. Unfortunately, another study found that 24% of children with well-controlled seizures were receiving special education services. Furthermore, research demonstrates that the academic trajectory of students with frequent seizures may decline compared to healthy classmates. As this suggests, the status of students with epilepsy may change with time. For example, academic decline over a three year period in reading and math has also been observed in children with new-onset epilepsy. Children who were younger at time of diagnosis changed the most, suggesting that early disruption by epilepsy, when basic academic skills are still being learned, might be especially problematic.
Experimental investigations have yet to find an association between specific subject matter (e.g., reading, math) learning problems and epilepsy. Instead, all areas appear at risk. In fact, one recent study found that 41-62% of students with epilepsy suffered a learning disorder in at least one subject area. Indeed, research routinely documents academic underachievement (compared to IQ) among students with epilepsy when considered as an entire group.
What to do:
When teachers see a struggling student with epilepsy they should consider several steps:
1. An important first step is to refer the student to the school psychologist for a comprehensive evaluation; such an evaluation can determine cognitive and academic strengths and weaknesses. A detailed neuropsychological evaluation (perhaps by a clinic-based neuropsychologist) that assesses language, memory, visual processing, attention, and executive functioning may also be warranted.
2. Once the student’s general and specific strengths and weakness are determined, teachers should try to match the curriculum and instructional approach to the student’s skills.
3. Next teachers are encouraged to collaborate with behavioral specialists, special educators, or school psychologists to develop scientifically-supported accommodations to help the student succeed in class (this might involve an FBA, as mentioned above). Accommodations need to be tailored to each student’s pattern of strengths and weaknesses. The What Works Clearinghouse website summarizes scientifically supported accommodations for struggling learners and can sometimes help to teachers with intervention planning.
4. If informal attempts at accommodation are unsuccessful, then formalized supports for the student via a 504 Plan or Other Health Impairment (OHI) special education designation might be considered. Given the elevated risks for learning problems among students with epilepsy, it is not surprising that they are frequent users of special education services. What is surprising is that the special education category entitled “other health impairment” (OHI) is seldom the basis for services. One study found just 16% of students with epilepsy had an OHI designation, compared to 48% for several non-OHI categories added together. Teachers are referred to the EdMedKids section on Disability Rights for more facts on these categories and considerations for special services for students with pediatric illnesses. In general the EdMedKids website encourages educators to consider the OHI options for struggling students with epilepsy, even though it historically has had low national usage.
Regarding accommodating specific memory deficits, teachers might consider:
- Frequent repetition of material
- Redirection
- Cueing
- Memory learning strategies such as mnemonics
- Extra time for assignments and exams
- Non-timed assessments to measure performance
- Break tasks down into simpler steps
- Provide several brief tests instead of one long one
- Use a recognition format for exams rather than a recall format
- Test for understanding rather than specific facts
Regarding accommodating specific language deficits, teachers might consider:
- Provide extended time for verbal responses
- Limit oral examinations and/or presentations
- Allow rewording of verbal material and instructions
- Slow the pace of verbal directions
- Provide written directions
- Pair student with a classmate to help clarify directions
- Use examples and visual guidance
Direct instruction is a general teaching strategy that seems well suited to students with epilepsy. It uses scripts of designated examples and a specific order of presentation. Scripted instruction may help students focus better on instructional content because they need not contend with differences in instructional delivery. Scripts can also ensure students encounter familiar language during classroom discussions that they may have missed because of seizures. More frequent learning checks via content-specific questions may also be needed to identify skill gaps EdMedKids provides a link to the National Institute for Direct Instruction where teachers can learn more about how to implement this instructional strategy in their own classroom.
The ideas above represent sound teaching practice. However, their precise effectiveness for students with epilepsy has yet to be established by research. Thus, educators are encouraged to monitor the effectiveness of their intervention by collecting data. Asking a school psychologist or school counselor for help in collecting data may make this process more feasible (see the Teacher Toolbox for a sample letter requesting assistance from the school psychologist). If informal attempts to gain assistance are unsuccessful, then EdMedKids website recommends considering a formal OHI designation or using a 504 accommodation plan (see Disability Rights).