What’s school like for a pupil with SEN and epilepsy? Carol Long reveals two families’ very different experiences
SEN departments across the UK have been under increasing pressure recently when it comes to funding and resources. According to recent statistics, the National Association of Head Teachers (NAHT) found that funding for schools supporting pupils with SEN and disabilities was at crisis point, citing a survey of members (Empty Promises – The crisis in supporting children with SEND, 2018)that found 94 per cent said it was harder to support such pupils now than two years ago.
Epilepsy and SEN
Epilepsy is a neurological condition that affects one in 220 children and young people. There is clear evidence that these children have a high rate of difficulties in cognition and behaviour. Research by Young Epilepsy (The Children with Epilepsy in Sussex Schools – CHESS study, 2014) shows that 40 per cent of those with the condition were functioning in the learning disabled range. Of the children in this study, 28 per cent were not receiving SEN support.
This research made apparent that children were not receiving treatment for, or being helped with, these difficulties. This gap in provision is likely to contribute to further difficulties with academic progress and has a significant negative impact on the quality of life of these children and their families.
Of course, parents report very different experiences. I spoke to a couple of mums who shared their stories about how their school has supported their child with epilepsy and additional education needs.
Mother Rebecca describes the dilemmas they have faced in trying to secure the right schooling for her son Matthew.
“Matthew was diagnosed with epilepsy and cerebral palsy at the age of four. We are extremely lucky that Matthew is high functioning. His medication is controlling his generalised seizures really well, but he still has daily absences and myoclonic jerks.
“As parents, the decision as to whether Matthew attended mainstream school or an SEN school was largely taken out of our hands, as Matthew had started at our local mainstream infant school just two months before he had his first seizure, leading to his epilepsy and cerebral palsy diagnoses.
“Matthew is now about to begin his GCSEs. This is certainly a position we thought would be out of Matthew’s grasp when he was diagnosed, but it has been a long, stressful, worrying but overwhelmingly rewarding time.
“I learnt very quickly that although we were very lucky in that Matthew is high functioning, this left him in effectively ‘no man’s land’. If he remained at a mainstream school then Matthew would always struggle, be bottom of the class and unable to progress at the same rate as his peers. He is however a very capable boy, and all local special needs schools meet the needs of children with a much more profound learning need than Matthew. And whilst he may feel less pressure and stress at one of these schools, it would probably hold him back and prevent him from reaching his personal best.
“Infant school was wonderful and the Headteacher was prepared to spend the funds necessary to provide one-to-one support for Matthew in class time, as well as extra staff in the playground where he was always supervised. As a school, they really could not have done more. They were open to our suggestions and Matthew thrived in this environment.
“Junior school from age six to ten was certainly the most stressful and disappointing time in Matthew’s life. The school was unprepared to provide the input that Matthew needed. Due to the lack of an [education health and care (EHC) plan or statement] we had very little legal standing and Matthew, without a doubt, suffered greatly both in terms of his education and emotionally.
“He dropped behind his peers which led him to believe that he was stupid. His self-esteem dropped and he was often very depressed. We had no support from the school. Whilst lessons were designed to help him, he felt singled out as he would be called out of main lessons, and this reinforced his feeling of being stupid, different, isolated, and his depression became a real cause for concern. During this time we considered moving Matthew to a specialist school, but non catered for a child who has Matthew’s ability. We were back in no man’s land with a very unhappy child.
“Matthew is assessed as being four years behind academically, and I believe this is not solely due to his learning difficulties. I feel very strongly that, for Matthew, the input that he needed is just not available.
“We now have a very supportive secondary school who have invested a great deal of time and money in Matthew with many intervention classes. His self-esteem is still low, but has improved since joining a school who are open to supporting SEN children.”
Mother Sue describes how well her son Alfie has been supported at his special school.
“My son Alfie is 14 years old. He’s had multi-focal epilepsy since his birth, as well as having significant learning difficulties, and he is on the autistic spectrum too.
“He attends a fantastic local special school who have not only great teachers, but a good medical team on-site too.
“I think the difference having a child in an SEN setting with epilepsy, compared to one in a mainstream one, is that they already have experience of caring for children with long-term conditions such as epilepsy.
“The school even understands that seizures and the medication he takes can make him tired, so will ensure that if he needs it, he will get some rest in the medical room. They always ring me to keep me updated, but don’t insist I pick him up every time he’s not feeling right. They understand that epilepsy is part of him and that, actually, he could be simply having an off day (as we all do) and not everything is down to his epilepsy. That said, they understand the importance of watching him carefully. For example, he’s been experiencing possible absences, which he’s never had before, so they’ve been helping me to monitor him closely. I guess that the class size helps matters. Alfie only has nine in his class, compared to the 30 at an average mainstream setting.
“To be honest, we were very lucky with his mainstream primary school and their efforts to help Alfie. But my understanding from some of my charity’s members (I run a local charity… which supports parents and carers of children with epilepsy) is that it’s definitely harder for children in a mainstream setting who have no additional needs support.
“Despite this cruel condition and its unpredictability, I feel my son is very well supported and understood when it comes to his epilepsy and managing it.”
No child or young person with epilepsy should be left behind at school. The importance of individualised support to those who need it most should not be underestimated. While it is heartening to see evidence of many schools following guidance from the Government in ensuring every child with epilepsy and other medical conditions is supported, there is still a long way to go. It is crucial that all young voices, and those of their families, are heard, and that we can together build an inclusive academic environment for every child who has to face their condition on a daily basis.
Carol Long is CEO of the charity Young Epilepsy: