Children with hemiplegia are much more likely than most to have behaviour and emotional problems - but why is this? Dr Ian Frampton explains how the brain's amazing ability to recover from damage can leave children with hemiplegia feeling irritable.
Why are children with hemiplegia stroppy?
Picture the scene: Seven-year-old Jack is just coming out of school to meet Mum in the playground. His behaviour has been OK today and for once his teaching assistant isn't following on behind him to report on Something That Had Gone Badly Wrong.
Jack comes swinging out of the classroom, spots Mum in the corner of the playground, lurches towards her and lands a deftly-placed kick on her shin; no mean feat (pardon the pun) considering his moderate left-sided hemiplegia...
Does this scene sound at all familiar to parents? Why is it that children with hemiplegia, despite being so sparky and lovely in so many ways, just tend to be, well, stroppy?
Brain and Behaviour team
It's now ten years since I started working with Professor Robert Goodman and Louise Proust at the Brain and Behaviour Team at the Maudsley Hospital and Institute of Psychiatry in London.
I spent a lot of time with Robert and colleagues thinking about this question, and a lot of time talking with parents and young people coming to the National Specialist Clinic for the psychological complications of hemiplegia.
Hemiplegia study
Our office was next door to Dr Carole Yude. Carole and Robert had previously worked together on a unique study about hemiplegia which will be familiar to lots of people connected to HemiHelp.
Robert and Carole managed to find ALL the children in the Greater London area with a diagnosis of hemiplegia, 428 in total, and found out how they were getting on in school, at home, and in their psychological development.
Robert and Carole found that, despite coming from homes and backgrounds that are just as normal as any others in London, children with hemiplegia are much more likely to have significant psychological problems in two areas: behaviour and emotions.
Behaviour problems
The behaviour problems Robert and Carole found were quite specific. In psychiatry we like to categorise things and we separate behaviour problems into those related to hanging around with the wrong crowd (things like setting fire to things and hurting small animals) and those related to something more 'constitutional' about the way you're made (things like having a short fuse or producing impressive tantrums at the drop of a hat in Sainsbury's).
Children with hemiplegia were much more likely to have the second kind - to be irritable and quick-to-anger, and we found out from talking with parents and young people in the clinic that this could become a real problem in their lives.
To some extent, we made sense of this irritability as an understandable response to having a physical disability and living in a disabling world.
Neuroplasticity
However, Robert's research showed that there was another angle on this issue: the evidence suggested that the tendency of children with hemiplegia to get easily irritated is a naturally-occurring side effect of the extraordinary ability of their developing brain to reorganise itself, a process we call neuroplasticity.
This re-organisation does amazing things to preserve language skills and to help the developing child with hemiplegia, but it does have a cost. Because parts of the brain probably get wired up with each other during this process, in a random way, that shouldn't be connected, there is an increase in random electrical 'noise' in the brain, which would make anyone feel stroppy.
The analogy I've used is that most of us have experienced something of what this feels like at times: remember the last time you had a hangover?
By temporarily altering your brain physiology with alcohol, you've generated the same feeling of being slightly irritable and less tolerant of stressors that some children with hemiplegia may feel all the time.
Problem behaviour is not your fault
So, what does this mean for children with hemiplegia, and for you as parents?
For me, the most important single implication is that the problem behaviour is not your fault (we know this anyway since often parents know that the strategies for dealing with tantrums just don't seem to work for children with hemiplegia).
The other implication is that in some sense the problem behaviour isn't the child's fault either, since it's a component of their disability.
Managing behaviour
This isn't the same as saying that children are therefore not responsible for their behaviour; but rather that we need to work together with parents, young people and teachers to find ways of helping children learn to manage their behaviour and to cope when things don't go their way.
Sometimes this will mean changing the expectations for the child (maybe the school is expecting too much); other times it will mean working on behavioural strategies to find ways to respond to the behaviour that reduces its frequency or impact.
As parents you might need to help your child's physiotherapists and teachers remember that hemiplegia can be about more than the physical disability, and that your child is learning how to cope with some stresses that can't be seen.
Achieving amazing things
The good news is evident in every edition of the HemiHelp newsletter: as they grow, like all children with your support they learn ways to cope, to achieve amazing things and to grow into adults that as parents you can justifiably be proud of.
Dr Ian Frampton is Consultant Clinical Psychologist in Paediatrics at the Cornwall Partnership NHS Trust, and the author of HemiHelp's leaflet on Coping with Behaviour Problems. This article first appeared in issue 60 of the HemiHelp newsletter in December 2006.
