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Many of the calls we receive are about behaviour. Unfortunately, as parents, our ability to manage our child’s behaviour seems to be one of those things that identifies us as ‘good’ or ‘bad’ parents, which is why when things seem to be going wrong it is often distressing. The first thing to remember is that all parents have difficulties with their child’s behaviour sometimes and the second is that though we can’t control children’s behaviour, we can manage it.

How hydrocephalus may impact on learning and behaviour

Children with hydrocephalus typically have problems with understanding language, concentration, short term memory and processing information. All of these, potentially, can have an impact on behaviour. If you can ‘t remember instructions then you won’t be able to carry them out. If you have trouble transferring knowledge to new situations itmay be that you can do something in one place but not another. If you don’t understand jokes your friends may think you‘re a bit ‘odd’.

The impact that hydrocephalus can have on learning and behaviour varies with each individual. Some people may have very few problems, where as in others the consequences can be much more serious. It is important to remember that children with hydrocephalus often have a number of specific learning difficulties, which may mean that they learn in a different way, and need different strategiesto help them. Additionally, if children are struggling at school, either academically or with their social relationships this can have a detrimental effect on self- esteem, which in itself can cause behavioural difficulties. If you think this may be an issue it is important to talk to your child’s school.

Human behaviour is extremely complicated. Psychologists, sociologists, philosophers, educationalists, politicians and many other groups have studied, analysed and argued over many years about how and why we behave in particular ways. This has led to a multitude of theories about how behaviour can be managed and in recent years numerous television programmes and books which often make it look very easy! Parents, and teachers, often feel de-skilled when faced with a child who does not behave appropriately.

This, in turn, can lead to the situation getting worse as parents get more and more frustrated and children feel more powerful but also less secure, making their behaviour even more extreme. In children and adults with developmental difficulties it becomes even more complicated as they may not react in the way we would expect.

Strategies for managing challenging behaviour

All the manuals and programmes necessarily ignore individual circumstances and personalities, some will argue that these aren’t relevant. It is, however, very difficult to give a standard recipe for improving children’s behaviour. Every situation is different and may require different strategies, but there are ways that we can begin to work out what is going wrong and how to put it right.

* Firstly, try to detach yourself from the situation a little. This is not easy but try to see it as a problem to be solved and approach it ‘scientifically’

* Make a list of the behaviours which you are finding difficult, then prioritise them from the most to the least troubling

Concentrate on the behaviour at the top of the list and make a note of anything which might be relevant. When does it happen? Where does it happen? Is any other particular person involved? How often does it happen? What happens before? What happens after? How do other people react? How does it stop? You may need to observe for a few days

* Then try to work out what the child is getting from this behaviour. Is it attention? Do they enjoy the fuss? Do they get their own way? Do they avoid doing something else?

At this point you should have some ideas about what triggers the behaviour, how it stops, and what the child gets from it. Now you are in a better position to try to change it. This will take time. Your child may have been practising this behaviour for several years. It is unrealistic to expect it to stop immediately. You and your child will need to learn new behaviours to replace the one you want to stop.

There are four strategies, which are particularly useful;

Routine - the more established a routine the less likely a child is to try to change it. You may need a ‘going to school’ routine, a ‘what to do when you come home’ routine, a ‘bedtime’ routine. In fact, wherever you notice a time that causes problems, try a routine. Routines are particularly important for children with short- term memory problems. Repetition enables them to remember what to do and allows them to be more independent.

Consistency - this ties into routines but also includes how we respond to a behaviour. If we always ignore ‘Johnny’ when he shouts then eventually he will stop shouting, if we only ignore it now and again then he will learn that it works sometimes and he keeps trying.

Look for the Positive, Ignore the Negative sometimes - we have to make a real effort to notice the positives but when you do notice that your child is behaving appropriately, make sure they know you’ve noticed. Reward good behaviour, however small. Rewards can be anything that the child enjoys; a cuddle, five minutes playtime, music, just a smile. It doesn‘t have to be a present. Try to ignore inappropriate behaviour as much as you can. If you have to intervene do it as calmly and as quietly as possible, avoid arguments and discussion. Make instructions clear and positive; ‘This is what I want you to do’, not, ‘Don‘t do that’.

Make time - try to make some time every day which is just for you and your child. It could be built into a routine, for example, at bedtime. It is important that this time is guaranteed, no matter what, even if you don‘t feel like it. If your child doesn’t feel like it, make it clear that this is special time and you are available if they change their mind.

These strategies may well help in curbing inappropriate behaviour but this is when the hard work really begins! Children need help in learning how to manage their own behaviour. Some children with hydrocephalus will need direct teaching of social skills because they find social interaction, understanding language, reading emotions and body language very difficult. They may need to learn how to manage their own emotions. What do you do when you are angry, frustrated, really excited?

Again, this is very child specific and not everything can be covered in this leaflet. Shine Support and Development Workers, and Shine Education Advisers, are here to offer advice. Call 01733 555988 or email to locate your local contact.


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Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.


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