Page 62 - SEN115 - November/December 2021

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to be fixed. The deception lay not in the epilepsy being ignored or called something else but in parents’ certainty that epilepsy will pass away once the child was diagnosed and medication prescribed. We tend to hear what resonates with us and learn to see what pleases us. In doing so we often ignore the things that are uncomfortable to explain and observe.
In schools across the country children with absences (a particular type of epilepsy) are sometimes designated as daydreaming or not ‘with it’ until the persistence of the parent or the astuteness of a professional raises a concern about the child’s capacity to be alive to the situation.
Epilepsy by itself is not a learning difficulty since it is a medical condition however, the impact of epilepsy on a child and young person’s engagement with learning is profound. A child repeatedly having small absences in the classroom will be missing chunks of learning and losing any hope of catching up as their peers’ forge ahead. Self-esteem suffers as a consequence of not being quite there alongside their peers. Specialist appointments and missing school all play their part in the child not fully in education. Alongside this, the child experiencing seizures is worried about their presentation. Sometimes accidents happen and a seizure may lead to loose bowel movement or urine leaks. A child experiencing drop seizures is seen as vulnerable and as someone for whom it is difficult to provide care for in school. This in turn may lead to behavioural problems and the child is seen as difficult. Dom’s story below provides a context for this.
Epilepsy and Dom
Dom was in mainstream school doing well. He was observed to be polite and conscientious about his work. Around the age of fourteen epilepsy appeared in his life. The onset of epilepsy was gruelling; the family saw the boy they knew disappearing before their eyes and he found it difficult to hold his own in his mainstream class. Often, he was physically present but having absences and missing chunks of information. His presentation became a topic of conversation amongst peers with words that were meant to hurt. His behaviour was now the source of concern for the school and his parents. Dom himself was concerned about his lack of knowing and missing chunks of information that his peers appeared to grasp whilst he was
“May lead to behavioural problems and the child is seen as difficult.”
not aware of it. His presentation changed from being lively and energetic to disorientated and confused. As epilepsy started taking over his life it became difficult for him to be present in learning and eventually in school. The consistency in his life was now the hospital stays. The family were in crisis as they worried about the next time, as his strain of epilepsy was drug resistant.
Dom’s case highlights the unpredictable aspect of the onset of epilepsy. No one in Dom’s family has epilepsy and this took the family by surprise as it turned their lives topsy turvy with such force that they can only dream of the lives they used to live. For Dom the future is one in which his cognitive abilities will deteriorate. At present he is aware of the deterioration and he himself is experiencing the loss of who he was. His mental health and emotional wellbeing are suffering as his quality of life worsens. From a position of independence, it is likely that with time he will become dependent on carers for most of his basic needs.
Both cases highlight the human cost of epilepsy that is often forgotten as parents stride from one episode to another with professionals holding their hands but not able to do what the parents actually want; get rid of epilepsy. Management through medication appears the most that can be done. Parents find themselves chasing and fighting bureaucracy to get the right provision for their child. A fight on top of others. Managing epilepsy and the care for their child becomes an all-consuming affair and at times is relentless in its urgency. School staff often do not understand the nature of epilepsy and find themselves at a loss to support the child and the family.
The challenge for the parents and the school is to maintain the placement while providing a sense of normality to the learning environment.
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Epilepsy