The time bomb of head trauma
A freak accident in class left 12-year-old Elizabeth in a wheelchair with a brain injury. Now 14, the Ayrshire schoolgirl tells her story in a film to increase teachers' awareness about children with acquired brain injury and how it affects their educational and social needs.
Elizabeth was in technical class when the accident happened. "I dropped a ruler and went down to pick it up, came up and bumped the back right-hand side of my head," the teenager explains.
"The pain was horrific. All the doctors said to us was: 'You could have brain damage.' It was the worst night of my life."
Since then life has been a struggle for Elizabeth and her family, who are still coming to terms with the consequences of her bump.
"At school it's just really hard now. The headaches and the constant fatigue have just been awful. I get so tired. Even just the slightest wee noise, I find it so much harder now to concentrate," says Elizabeth.
Childhood acquired brain injury, known as ABI, is an injury sustained after the neo-natal period. Around 90 per cent of child brain injuries are the result of a head trauma, such as when a child is knocked down or involved in an accident; 10 per cent are a result of illnesses such as encephalitis, meningitis and brain tumours.
In 89 per cent of cases, children sustain mild injuries and won't necessarily show any physical evidence of having an acquired brain injury. But Jenny Hill, project manager with the Child Brain Injury Trust charity, says their physical recovery can mask underlying problems which may only emerge years later.
"ABI is a long-term condition and children will develop problems often much further down the line, as their brain develops and they need to acquire new levels of skills," she explains. "Many children make very good physical and speech recovery. So they return to their mainstream school, and people working with them take that as a sign that things are potentially back to how they were before." But this may be far from the case.
Cameron, 13, from Penicuik, is grateful to be alive after he took ill four years ago. "I had a stroke one day at school. I fell in the playground and when I got up I didn't know who anyone was, except for my family," says Cameron, who with other children took a key role in determining the focus of the awareness film As Easy As ABI, made by the CBIT with support from the Big Lottery Fund.
"When I went back to school, I couldn't really cope that well, though people were doing stuff that I used to be able to do. I felt really quite left out," he says.
"I can still write, but I just can't write as fast; it takes me longer to think about things. I need reminding quite a lot, because I forget things quite easily."
Neuropsychologist Kirsten Verity, an adviser on the steering group of the CBIT in Scotland, explains: "One of the most common effects of ABI is on memory and learning new information. For example, one day a child may be able to undertake a task successfully and the second day they may really struggle with the same task.
"Attention and concentration problems are very common. In a classroom environment this can present a lot of difficulties. A child may be easily distracted or have difficulty understanding what they have to do, if they are being asked to do several things at once."
It is estimated about one in 30 children will have a significant brain injury at some point, says Dr Verity, who is based at the Royal Hospital for Sick Children in Edinburgh.
"Acquired brain injury can be thought of as being a kind of hidden disability or a silent injury, because often it's not clear initially what the extent of the injury is.
"A classic silent injury would be damage to the frontal parts of the brain or the frontal lobes," Dr Verity explains. "These are the parts of the brain that deal with executive functioning, the ability to plan, organise, to forward think, to think about the consequences of your actions.
"If these parts of the brain are damaged - which they are reasonably frequently in head injury - they can cause difficulties that don't become apparent until later.
"So, a 14-year-old would be expected to be able to organise their social activities, to think about what books they might need the next day, to make sure their homework is done on time, to pack their schoolbag and so on.
"We don't expect a four-year-old to be able to do that. So if a four-year-old has damage to those parts of the brain, we might not see the extent of the damage until that child is 14.
"If the information that this child has had a head injury isn't passed on, then the difficulties that emerge later might not be easily understood by people working with that child."
Some young people may also have difficulty judging social situations as a result of childhood acquired brain injury. "The frontal lobe is the part of the brain that helps you to judge how you are fitting in with people and situations around you," Miss Hill explains.
"So behaviour relating to the frontal lobe injury might be immaturity, over the top reactions to things, a lack of inhibition. Children might be a bit tactless, which of course is all right when you're four. You're allowed to stand in a supermarket at four and say 'Mummy, isn't that lady fat?', but you can't do it when you're 14 and get away with it."
In research done by the CBIT in 2004, affected children said one of the most important issues they faced was loneliness. One reported: "I don't talk to people; I don't make friends. That's my fault but it's related to my injury. It's rotten."
One reason behind this, Miss Hill explains, is that they often feel they are too slow to keep up in conversations. "In school social areas, there's information flying around and jokes and noise and lots of things to think about, and it can be quite draining, particularly when you have spent the morning trying to remember things, take notes and so forth, all of which may be affected by the brain injury"
The research also identified that educating teachers about acquired brain injury was a priority for the children and their families. "The parents were talking about how their children were coming home very distressed and feeling left behind and depressed by the changes in their ability," Miss Hill says.
"Teachers, I think, are really key to children's rehabilitation in that the main supports children will need are around learning and social rehabilitation."
The CBIT runs short awareness-raising sessions after school, as well as more intensive day-long training courses for teachers. Child and family support officers work closely with teachers and families, helping with children's educational and health needs.
The trust also runs a network of support groups for parents and youth groups for affected children, who may have lost confidence and self-esteem as a result of their injury.
Some of the children who appear in the film talk about being called names by other pupils and about how some teachers' lack awareness of acquired brain injury hampers their understanding of why affected children are struggling and how to help them.
Connor, 14, tells how he was left with a brain injury after a bone-marrow transplant to treat his leukaemia when he was five years old. He was unable to speak for a number of years after the operation and, though his speech has recovered, he struggles to make himself understood.
"People don't know how intelligent I am and it's not fair on me and other people with brain injuries," the cheery charmer says in the film, which is supported with subtitles. "Some teachers didn't know how bright I was. Guess what they thought I was? As bright as a 10 watt bulb!
"Please don't call a brain-injured person lazy, because it's really disrespectful. Teachers have said that to me before and it's really hurtful," says Connor.
He describes his mum's struggle to get the right support for him at school. "What a difference it made when Mary from the Child Brain Injury Trust came to my review meeting. She was able to explain from a professional point of view what brain-injured children need. And guess what? My life and happiness at school has been made a whole lot better."
Connor's mother, Alison, says the current exam system is quite difficult for her son and doesn't always provide an accurate reflection of his ability. However, she adds: "I think it's really important for the parents of brain-injured children to fight for full-time support in school if their children need it, because it's really made a difference for Connor having a support assistant with him, scribing, prompting and helping in class."
Despite time in hospital and the feelings of despair and loneliness these children may have experienced, they all have ambitions to make their way in the world, pass exams and be successful. Elizabeth is taking science subjects and hopes to become a vet or a doctor.
Towards the end of the short film, she makes an eloquent plea on behalf of children like her. "I'd beg any teacher watching this to go and just learn anything about acquired brain injury. We are not lazy and we do try our hardest to do everything that we can, but it's not easy. So just treat us with a little bit of respect. We can get most places with a little bit of help and understanding."