We need to understand the challenges that epilepsy brings, writes June Massey.
Epilepsy is often viewed as purely a medical condition rather than a potential barrier to learning, but eminent medical and education professionals have argued that the two are inextricably linked for many young people. Indeed, of the 60,000 young people with epilepsy, around two thirds may experience challenges in learning that will affect academic attainment, yet 95% of those students will attend mainstream schools. So that is just around 38,000 students that we have to worry about!
Students and adults who reflect on their learning experiences will often describe the impact that epilepsy can have on memory and processing as one of the most significant challenges in learning and, potentially, on achievement. As a specialist teacher who has carried out research in this area, worked with parents, children and teachers and coordinated support in FE and HE settings, I can corroborate their comments regarding the need for understanding of these challenges and the implementation of appropriate support and adjustments.
Those of us who teach students with specific learning difficulties/differences will be fully aware of the impact on learning of weaknesses in cognitive processing areas (short-term and working memory, concentration and information processing). In this area, young people with epilepsy will experience similar challenges as those with SpLDs. These weaknesses in cognitive skills may be caused by a variety of reasons, including the impact of medication and the ‘after effect’ of seizures. Students who have nocturnal seizures may find difficulty with maintaining concentration or with memory and processing the following day. Similarly, although an absence, focal or tonic clonic seizure (Epileptic seizures explained | Epilepsy Action) during the school day may last for a matter of minutes, or even seconds, the student’s concentration may be impaired for some time afterwards. Consequently, it is important that the fact that these difficulties may be permanent or sporadic in a student with epilepsy must be recognised, especially when teaching. Very often patterns will emerge which will make it possible to predict how much support the student will need after a seizure. Parents and students will also be able to keep you up to date with changes in seizure patterns; medication may be increased as the child grows and there can often be a period when side effects temporarily become more intrusive. I am certain that you have all witnessed the increase in the level of engagement in strategy-building when the student has ownership of their disability!
Support/classroom management.
As specialist teachers we are all aware of the varying profiles of students who are included in the ‘umbrella’ of neurodiversity. We may support a small group which comprises students with, for example, dyslexia and dyspraxia. A focus of the session may be revision, so we will teach strategies that are appropriate for those who need strategies for memory (suiting their individual profile, of course!). On a day to day basis, our cohorts of SpLD students have, among other adjustments, opportunities for overlearning, information repeated or written down for them, handouts in advance or are not expected to answer a question as quickly as others. If we discover from the student, parent or medical evidence that our students with epilepsy have problems with memory and processing, most of the strategies and interventions that are in place for other SpLD students could also be in place for them. In my experience, students with epilepsy who are included in the small group strategy-building sessions do not feel the same sense of isolation as they do when they are seen to be completely ‘different’ from their peers. Obviously, the student may have other needs that need to be met on an individual basis but in this aspect of their epilepsy, they can be part of a wider group. This seems the obvious way forward but I have yet to find epilepsy included in a chart/diagram that describes the types of differences that come under the ‘neurodiversity’ heading.
Case study
At an FE college a student and his parents attended an interview with the student’s college tutors. I was invited to discuss study support requirements.
The student told his tutors that he had nocturnal seizures and the occasional absence seizure, which may occur during classes. The tutor’s immediate response was that she did not have concerns regarding his nocturnal seizures, as they did not happen at college. However, she would check with him that he hadn’t missed any information if he’d had an absence seizure during class.
I then asked whether the nocturnal seizures affected his performance the next day. His parents looked extremely relieved that the impact of nocturnal seizures on his concentration had been considered and confirmed that this had affected his studies. They also believed that nocturnal seizures during the GCSE exam period may have contributed to his falling short of his predicted grades in two subjects.
As a result of this meeting, general (but subtle!) classroom support – which he could access as necessary – was put into his lessons in the morning. He was also given a one-to-one study skills session for one hour a week. His course tutor would ensure that he had handouts of all of the information that was discussed and he and the study skills tutor could identify those areas that he had missed. As he viewed his future support as being discreet, he became more enthusiastic and also disclosed that it often took some time for him to regain concentration when he recognised that he had had an absence seizure. He just sat quietly in school and hoped that the teacher had not noticed his absence seizure and that he wouldn’t be asked a question!
Examination adjustments
Most schools will have examination adjustments in place for their students with epilepsy. This may include exams set at different times (for example students who regularly have nocturnal seizures may request afternoon exams), rest breaks, practical assistance or time added on to an exam if an absence seizure has occurred. Special consideration may also be applied if a student has a seizure during the exam and is unable to continue or a seizure prior to the exam affects their performance.
However, it may be necessary to add the student to the list of those requiring access arrangement assessments if medical evidence does not support the presence of memory and processing difficulties. Some consultants may administer tests of memory and processing; schools may wish to advise parents to ask the consultant if he/she would be able to do this to provide evidence. I have requested a word processor for a student with epilepsy where processing difficulties cause challenges with structuring written work and extra time is often given.
Higher Education
I have spoken to many parents whose children have serious concerns about studying and living independently. Most students also believe that problems with memory and processing will prevent them from demonstrating their skills and knowledge fully. They worry that tiredness due to the extra time that it would take them to complete work and the stress of feeling that they are not achieving fully could also precipitate seizures.
I have worked for nearly twenty years in the Higher Education sector, assessing and advising students and teaching study skills; the quality of support is incredibly high across the sector.
The students can access three general types of support:
Institutional support (provided by the university). For students with memory and processing challenges this can include extensions to deadlines, having handouts before a lecture (to give time to read and process the information), being able to record lectures and tutorials (to accommodate processing problems and any absence seizures)and directed reading lists. If the student allows disclosure, tutors will also be aware that he/she may need repetition of instructions or be given time to read and answer questions in class.
In addition, the student may discuss accommodation needs; these can include downstairs rooms, rooms with showers or those near onsite security/medical assistance.
Exam arrangements (provided by the university). Each university will have a different pathway to request and access exam arrangements but, generally, they will be similar to those that they receive at school. Once the student has confirmation that they have a place, they should contact the university’s disability adviser and advise them they will need institutional support and exam arrangements. The adviser will guide them through the processes needed to access support.
Disabled Student’s Allowance (DSA). Application forms can be found at Help if you’re a student with a learning difficulty, health problem or disability: Disabled Students’ Allowance – GOV.UK (www.gov.uk). The student completes the DSA application form, including medical evidence. They will then receive a letter informing them that their application has been successful. The letter will advise then to attend a Needs Assessment. This is carried out by a registered but independent company who will decide what the student needs. They will all have had experience of assessing a student with epilepsy! The DSA provides equipment such as a recording device or app to record lectures and assistive technology. It will also provide funding for one-to-one study skills tutors and mentors to help the student to manage the impact of processing and memory weaknesses.
I am very aware of the pressures of managing the myriad challenges that may be associated with disabilities and I do not wish to add to your workload by identifying a further need. Rather, I hope that I have highlighted an area that can cause considerable concern for learners with epilepsy and can be relatively easy to incorporate into your current classroom teaching practices.
Author: June Massey
June Massey
June Massey is a specialist teacher and assessor who holds a Patoss APC. She has parented a child with epilepsy and is a trustee of Epilepsy Action.
