From the age of five, Ruben’s unpredictable behaviour saw him getting into trouble with his primary school teacher – who thought he was ‘mucking around’ in class.
His mum, Stephanie, 44, was told that her son’s behaviour was poor, he was failing to pay attention in lessons and he was too distracted by ‘daydreaming’.
But Stephanie, who wished not to disclose her surname, couldn’t pinpoint why her kind-hearted little boy was suddenly the ‘naughty one’ and getting lots of sanctions in school. Mirror reports.
Then one evening, they were out for dinner in a restaurant when Ruben suddenly lost consciousness – and she instantly knew that something was seriously wrong.
‘Ruben’s first teacher was really negative about him and she would speak to me about him misbehaving and daydreaming,’ Stephanie told the Mirror.
‘He was six years old and we didn’t know what was wrong. Then a few months later, I noticed it for the first time. He just froze up for around 15 seconds.’
The mysterious episodes that Ruben was having regularly appeared like vacant stares. He would momentarily blackout and struggle to speak or listen.
‘While one school teacher refused to look beyond his ‘behavioural problems’, another picked up on the blackouts and Stephanie was encouraged to see a doctor.
Fortunately, the mum-of-four received answers, as Ruben was diagnosed with epilepsy and absence seizures quite quickly, and he was put on medication.
‘We were really lucky it all happened quite quickly,’ Stephanie said.
‘It is difficult because absence seizures don’t get much awareness and are harder to spot.’
Kirsten McHale, epilepsy nurse consultant at Young Epilepsy explained: ‘Most people expect an epileptic seizure to present as a convulsive seizure where the person may make jerking movements or drop to the floor – this is a generalise tonic clonic seizure.
‘However, there are so many different types of seizures that people are not so familiar with, such as absence seizures. These momentary blackouts can often be mistaken for daydreaming.
‘While absence seizures can look like a small event, they are very serious. A diagnosis like this can leave young people and their families feeling frightened, lonely and overwhelmed.’
Ruben, now 11, has around 15 absence seizures a day and doctors are unsure what triggers them – though strong emotions can bring them on.
He is no longer a part of the public school system, as Stephanie made the decision to home-school him three years ago, in part due to the lack of support and understanding.
‘It’s difficult for teachers because they’ve got so many children to manage. I just didn’t feel it was working out for him,’ Stephanie explained.
‘He’s much better at focusing one-to-one and happier at home. The pressure of full-time school would be too much for him every day.
‘I don’t think many people understand his type of epilepsy as it can be quite deceiving. I think schools need to work on their training and awareness.
‘It’s hard to know if Ruben’s could have been picked up earlier, but they could definitely implement some sort of testing to help recognise it.’
Stephanie, who is mum to Lawrence, 23, Luchiana, six, and Harlen, three, does fear what Ruben’s future will look like with the neurological condition.
