HemiHelp Conference for Professionals, Southampton, 21 April 2005
Dr Valerie Shrubb: Managing hemiplegia
The first speaker of the day was Dr Valerie Shrubb, a Consultant Community Paediatrician. Valerie described that one of the main difficulties faced by parents and professionals alike is recognising that hemiplegia is not only a physical problem. As a short description, she offered: “a non-progressive motor disorder relating to one side of the body with the arm more affected than the leg. It is likely to be associated with learning, perceptual and behavioural difficulties.”
Valerie went on to remind us that children with hemiplegia are at greater risk of having epilepsy - 30-40% of those with congenital hemiplegia will develop the condition. It will usually present by age four (although there is a slight increase in incidence again around puberty), and often improves as the child gets older.
She also discussed emotional and behavioural difficulties which really test the family and in turn can be negative on the child. 50% have problems such as withdrawal, phobias, hyperactivity, depression or anxiety. Peer relationships can be difficult due to physical and learning difficulties, emotional and behavioural issues and external attitudes.
In terms of physical ability, Valerie suggested that it is critical to have OT and Physio as soon as possible so that maximum potential can be achieved. If there is an early enough awareness then some pathways may be opened.
Parents need to know that they are not the only ones experiencing problems, to have an understanding of the condition, and to appreciate that their child’s brain works differently to theirs. Valerie suggested that this is all education that can be provided by support groups, advice networks and therapists.
Adrian Faupel: Behaviour and emotion
The second speaker of the day was Adrian Faupel who is an Educational Psychologist. He started by declaring that what we do is tied up with behaviour and what we feel is linked to emotion. It is true of every human being that they behave well when they are feeling good about themselves and vice versa. Emotions are central to human life and influence thought, decision and response. Powerful emotions have the potential to hijack all others and any sense of reason disappears.
The common human goal is our need to BELONG; whether this is to a family, community or society. We also have the need for dignity, value and self esteem.
‘Bad’ behaviour is usually a signal that the child’s perceived legitimate needs are not being met and thus the child feels threatened. It is important to find out what those legitimate needs are. The question ‘Why?’ is what we usually ask, but who asks ‘why’ when you’ve done something good?
Adrian recommended the need to change the strategies- it’s not always about rewards and punishment so we need alternative ways of protecting the child’s self-esteem. Teaching by example is a good place to start but the message can often be misunderstood. It is about changing the strategies that the child uses currently to meet these needs and this means that the response to ‘bad’ behaviour needs to primarily be a ‘teaching’ one. In order to teach replacement behaviours we need to know what the function or purpose of the behaviour is. Or in other words what need is the behaviour trying to meet?
Pat Kennedy: Visual perception
Pat Kennedy, a retired OT and the author of HemiHelp’s leaflet What You see: Visual Perceptual Difficulties in children with hemiplegia finished off the day, and started by involving us all in activities to test our visual perception. What the human sees is fed directly into our memory store of time/space/direction and will create a mental map of our environment. This naturally is more difficult with a neurological disability and therefore anxiety levels can increase and panic is more likely.
Pat discussed hemianopia, which is when half of the visual field is lost after there has been damage to one side of the brain. Children with this may position things to one side only or only be aware of one side which leads to problems when reading a blackboard or copying words onto a page. The child recognises the words but cannot always find his place in the sentence without starting from the beginning again. Maths can often be difficult too, as the positioning of numbers in sums, and place value of units can get easily confused.
Pat recommended that attention be paid to the child’s position in the classroom in relation to display materials, texts and work books; as some children may be missing out on information due to a perception problem.