Helen Kedie, a teacher at a school in Cambridgeshire, has received the first Epilepsy Star award of the year for being an outstanding source of support to one of her students. Zac and his mum, Ruth, nominated Helen for the award as she has been ‘beyond brilliant’ and goes the extra mile to make sure Zac feels safe and happy in school. Zac, Helen and Ruth share their story.
Zac Navarro is now 15 years old and has lived with epilepsy for most of his life. He regularly has seizures and occasionally they are life threatening. He said:
“I’ve been having seizures for a good amount of my life – I had them when I was young until I was six and then stopped having them for about six years, but they came back. My seizures can happen at random times, or sometimes if I’m really tired. I mostly have really short seizures where I ‘lag out’ for about five minutes and then have to nap for half an hour. At their worst, the seizures go on for a long time and I sometimes wake up in hospital with lots of tubes around me.
“For me, having a seizure is basically my brain computer crashing and you can’t turn it back on again. I have to lie down and can’t do much stuff afterwards. It can be quite annoying when I’m doing schoolwork, playing football, or practicing the piano. When I wake up, I can rarely carry on or do anything. I sometimes have to miss out on school, meeting up with friends or going out with family which can be a real shame.
“Epilepsy can really impact my memory and thinking. Sometimes I can’t write very well and sometimes when I wake up after a seizure, I think, “oh, I didn’t do this correctly”. But school have always treated me kindly. They go easy on me for homework and help me with any challenges I face. I get extra time in exams which is helpful as I have time to visualise all the questions. Teachers also often stay with me to make sure I’ve understood everything.
It can be quite stressful for her, but she deals with it really well. Without Ms Kedie, I’d be pretty screwed.”
Zac’s mum, Ruth, recognises the huge difference that Helen has made to the family. She said:
“I can’t tell you what it’s like when you send your son out everyday hoping that he comes home. To send him into the hands of professionals who you feel care for him as much as you do is just beyond brilliant.
“Zac is a bright and brilliant boy, and he deals with an awful lot in life. Helen has leant into safeguarding him in a way that, instead of restricting the things that he can do, teaches him how to look after himself and teaches people in school how to stand alongside him.
“As well as being a lovely person, she is a genius at what I’d call ‘structured communication’ – she always knows how Zac is and what he’s up to because she seems to coordinate communication with everyone who teaches him. This has allowed her to do things like ask him if he wants to come home and sleep if some teachers have noticed he’s tired. That kind of noticing can be life saving for Zac. Helen always makes time to communicate with us as parents and looks after other teachers and children who have had difficult times standing by Zac when he has had a seizure. She also constantly thinks about and reviews policies to make sure he can maximise life, but in a way that he can feel and be safe in school.
“So much about living with epilepsy is so difficult. I wanted to nominate Helen because she’s an absolute star and makes things just that bit easier for us all. – Zac’s Mum, Ruth
Here’s to all the educators who go a step above and beyond and help our children to flourish and be the amazing people they are.”
Accepting the award, Helen said:
“I feel very touched that Ruth got in touch with Epilepsy Action – I’m not sure I have ever won an award at school so it’s a first for me. But I also want to emphasise that it really is a group effort at school. Zac’s teachers are amazing. They go above and beyond for him all the time, so the award is really for the whole school and not just for me. The school nurse is also very involved with Zac’s care, as is the Head of Senior School and Head of Year.
“When I first spoke to Ruth after Zac arrived in year 9, she was very clear that she wanted Zac to have the most normal experience he could have at school, and I think that has underpinned my attitude and approach ever since. Zac just wants to come in, go to lessons, play football and go to his drum lessons – he really doesn’t want a fuss.
“There are times when I have to speak to Zac about things he can or can’t do and I know that’s frustrating for him. Of course, we would work as hard as we do to make Zac feel comfortable whoever he was, but he’s such a lovely lad that it really is a pleasure to be his tutor. And his teachers say the same thing. Ruth and Luis, Zac’s dad, are amazing too. There really is the sense that we are all working together to try and make Zac’s time at school as positive and enjoyable as possible.
“I speak to Zac every week, as much as is needed really, and check he’s okay emotionally, not too tired, all is okay with his work – that sort of thing. I also like to hear how things are going with his football as that’s really important to him. My interactions with Zac have changed a lot this year. He is older and doing his GCSEs so there is perhaps more going on for him now.
I talk to Ruth quite a lot too. Sometimes we discuss small things I’ve observed, or teachers have told me, and sometimes there are bigger things to talk about. I talk a lot to Zac’s teachers too. That’s crucial. I let them know information Ruth has passed on to me and they talk to me about any concerns they have their end. But they also share all the positives too, and there are lots of positives.
“When Zac started in year 9, we didn’t have to talk directly to many other students about his condition because he hadn’t had a seizure in school. We didn’t want him to be defined by his epilepsy in any way. Ruth was always very clear about that, and we try to honour that approach as much as we can. We did however talk to a small group of students who were in an afterschool club that Zac attended. We asked for Zac’s permission to gather the students in the club, and I sat down with Eve, the school nurse, and we showed them a video about what a seizure looked like and what they needed to do if they thought Zac might be having a seizure.
“This year, Zac has had some seizures at school, so the other students now know. They have been great, very mature and understanding. We try to stress to students that their job is never to deal with Zac’s seizures directly and that will always be an adult’s responsibility. One other thing we do is have regular meetings with Zac’s teachers to discuss Zac’s academic progress, pastoral matters and share our experiences of being with Zac in lessons and during a seizure. That’s really important for staff. We all feel the gravity of keeping him safe. No one takes having Zac in their lesson lightly and we are constantly revisiting protocol as we learn more about what works best.
“My mother-in-law has epilepsy but it’s very much under control so very different to Zac’s experiences. Apart from her, I actually didn’t really know anyone with epilepsy before I took on the role of being Zac’s tutor.
“I have learnt a lot just from speaking to Ruth, Luis and of course, Zac. I’ve looked at some of Zac’s medical reports and I’ve tried to read more widely about epilepsy, so I have a clearer picture of what epilepsy means. But each person is different so it’s the conversations with Ruth and Luis that have been most illuminating. Talking to Zac and trying to understand how having epilepsy makes him feel has also been really important.
“I think trying to understand how epilepsy impacts not only Zac’s life but his whole family’s life emotionally is the key thing. It is a real privilege to be Zac’s tutor. Sometimes it does take up a lot of my time but I’m okay with that because it’s such an important thing to do.”