Hydrocephalus and behaviour

Many of the calls we receive are from parents and carers who are concerned about behaviour of their children with hydrocephalus.

Human behaviour is complicated. Many specialists have analysed and argued about how and why we behave in particular ways. This has led to many theories about how behaviour can be managed and numerous television programmes and books, which often make it look very easy!

The first thing to remember is that all parents have difficulties with their child’s behaviour sometimes and this does not make you a ‘good’ or ‘bad’ parent. The second point is that, although we can’t control children’s behaviour, we can manage it.

How hydrocephalus may affect learning and behaviour

Hydrocephalus can affect children’s concentration, working memory, understanding of language and their processing of 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 it may be that you can do something in one place but not another.
  • If you don’t understand jokes your friends tell, may think you don’t fit in.

The impact that hydrocephalus can have on learning and behaviour varies with each individual.

Some children, young people and adults with hydrocephalus may have very few difficulties with memory or processing information, whereas in others the consequences can be much more serious. It is important to remember that children and young people with hydrocephalus can have a number of specific learning difficulties, which may mean that they learn in a different way, and need a range of strategies to help them.

In addition, 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 lead to behavioural difficulties. lf you think this may be an issue it is important to talk to your child’s teachers at school.

Parents and carers can feel de-skilled when faced with a child who does not behave appropriately. This, in turn, can lead to a difficult situation as parents get more and more frustrated and children and young people feel more powerful but also less secure, making their behaviour even more extreme. When children, young people and adults have developmental difficulties the situation becomes even more complicated as they may not react in the way parents and carers would expect.

Learn more about hydrocephalus and early puberty 

Strategies for managing challenging behaviour in children and young people

It is 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, by seeing what is going wrong and how to put it right.

Firstly, try to detach yourself from the situation a little, and approach it ‘scientifically’ as a problem to be solved.

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.

There are usually three parts to a behaviour event: Antecedent (what happened before) Behaviour; Consequences.

You may need to observe your child’s behaviour for a few days…

  • 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?

Then try to work out what the child is getting from this behaviour.

  • Is it attention?
  • Do they enjoy the behaviour event and your reaction?
  • Do they get their own way?
  • Do they avoid doing something?

At this point you should have some ideas about what triggers the behaviour, how it stops, and what the child or young person gains from the experience.

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.

A positive behaviour support approach can help you to develop a behaviour plan with the help of your child’s teacher in school. You can then incorporate the behaviour plan into your child’s life at home.

Strategies to help:

  • 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 working memory difficulties. 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 a child or young person when they shout then eventually they will stop shouting, if we only ignore it now and again then they will learn that it works sometimes and they keep 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. Descriptive praise is used effectively by teachers to help a child to understand what they are doing well. Saying “behave sensibly” means very little to a child but “I like the way you were sitting still in assembly and joined in the singing” has more meaning for a child. Catching your child being good and then letting them know you’re pleased and proud of their behaviour makes a child feel good about themselves.

  • 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 or cost any money. 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” where you model the behaviour or describe it in more detail, rather than a negative such as “Don‘t do that”. Use as few words as possible and simple instructions like “Stop” and “Listen” in the same positive way teachers in school instruct children and young people clearly and simply.

  • 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 when reading a story together and talking positively about what happened during the day. 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! You need to be consistent when your child needs help in learning how to manage their own behaviour. Some children with hydrocephalus will need direct teaching of social skills because they may find social interaction, understanding language, reading emotions and body language very difficult, and may need to learn how to manage their own emotions.

Remember to support, to respect and to not judge so your child feels positive about themselves.

Further Reading
  • Contact for Families of disabled children
    Understanding your Child’s Behaviour booklet - download 
  • Positive Behaviour Foundation
    Behaviour Support Plan - read 
Donate Become a member