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Knowing how to behave

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Knowing how to act or behave

In day to day life we experience many different situations and places. As we grow we learn by trying new things and watching others. We learn how to behave in situations like:

  • Being in a classroom or at work
  • Going to a youth club
  • Going to church
  • Going into shops or restaurants
  • Being at home
  • Being with family or friends

It can be embarrassing or upsetting for a parent or carer when a child or young person seems to misbehave. In some ways this is a natural part of growing up. Children learn what’s right and wrong often by testing out different ways of acting at different times. But for a child or young person with hydrocephalus their actions may seem out of step with their age and stage (e.g. temper tantrums at age 10). This section explores why.

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Having rules and rewards

Most children respond well to rules and rewards. It is helpful to talk about what we want to happen (rather than what we don’t want to happen). This means we can reward the child or young person when they get it right e.g. “Well done, you’ve had a great week at school. We can buy your favourite comic / magazine this weekend.” Giving children and young people with hydrocephalus the same incentives and the same recognition is important. However, it might not get results as quickly or as easily.

We might need to make it easier for them to remember the rules. Think about what your child will use most: a diary; notes or pictures on a pin board; reminders on their mobile phone. It might be useful to have pictures or reminders of the rewards so that they remember the link between getting it right and something they like.

Example 1

Geoff, aged 13 was sometimes cheeky to his teachers. His teachers noticed this usually happened after lunch when Geoff was often a little sleepy. They understood Geoff might struggle a bit more than some of the other children but being cheeky was not allowed.

The teachers decided to give Geoff a task he enjoyed after lunch. They reminded him that he would get ‘team points’ if he got on with his own task without a fuss. The teachers also talked to Geoff’s Mum. She now gets a report of how well Geoff has done during the week. If he reaches his ‘team points’ target, Mum buys him his favourite comic at the weekend.

It’s taken a while but Geoff seems to be getting the hang of it and more often than not responds well to reminders of possible rewards.

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Setting boundaries

Like any other child a young person with hydrocephalus needs to understand what is allowed and what isn’t. Sometimes children do things that can be dangerous or might hurt other people. If this happens a child needs to know that it is unacceptable. We need to help them understand what the ‘right choice’ is. We can do this by rewarding the ‘right choice’ or action (behaviour). At the same time we can discourage the ‘poor choice’ by letting them know that there will be a consequence. This might be taking away something that they enjoy, like time playing computer games or watching television.

Example 2

Jennifer, aged 8 had a little brother Jack, aged 4 who loved to play with her. Jennifer was not so keen and often found Jack annoying. If he interrupted her when she was reading, she would hit him over the head with her book. This made Jack cry and run to Mum. Mum would get cross with Jennifer. This in turn upset Jennifer and soon everyone would be in tears.

Jennifer’s Mum had to talk to Jennifer and Jack:

  • About how much Jack enjoyed his sister’s attention.
  • About how sometimes big sisters like to be by themselves.
  • About how happy Mum was when they got on well.

Mum got Jennifer and Jack to work together to make a sign for Jennifer’s bedroom door. Then Mum set clear boundaries for both Jennifer and Jack:

  • She let Jennifer know that hitting was not acceptable at any time. They agreed that ‘reading time’ could be her quiet time but she also needed to spend a bit of time playing with Jack every day.
  • She let Jack know that he was not allowed into Jennifer’s room when the sign was on the door but that Jennifer would play with Jack later or the next day.
  • If Jack goes into the bedroom when the sign is up, Jennifer is to shout for Mum. If she does this Mum is really positive and takes Jack away. But if Jennifer hits Jack the consequence is losing TV time that evening.

When it all goes according to plan Mum gives both kids lots of praise and cuddles. They both seem to respond well to this and try really hard to stick to the rules.

Children like and enjoy lots of different things. It might take time and trial and error to find what works for your child. But, even when children try hard to stay inside the rules and boundaries, they can sometimes make a mistake. Some children with hydrocephalus may make more mistakes than others.

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Making mistakes or ‘testing’?

Children of different ages and stages will behave differently. In many cases their behaviour changes as they pass through a stage or ‘phase’. Behaviours tend to change as children learn and can do more to control the way they act. It may take them longer or they might need some extra help but many children with hydrocephalus can think and learn in the same way as anyone else.

There may be things that a child or young person can’t do. What they can or can’t do will depend on how old the child is and how their brain has been changed by hydrocephalus. This is different from a child that won’t do something.

Sometimes it can be difficult to tell the difference between ‘can’t’ and ‘won’t’. You may know this by understanding patterns in your child’s behaviour. You may need to experiment with different rewards, rules and boundaries to find things that work. This needs patience and understanding as genuine mistakes can be upsetting.

It might be tempting to think that a child or young person with an ‘illness’ needs to be allowed to ‘get away’ with more. We might think that they need to be allowed to do things or behave in ways that we wouldn’t usually allow because they are ill or ‘disabled’. In most cases a child or young person with hydrocephalus should respond to rewards and consequences in the same way as any other child. It may take them a little longer but trying to change ‘difficult’ behaviour will make everyone happier.

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How we feel when something goes wrong

When we know we have got something wrong we often feel embarrassed or confused. This is no different for someone with hydrocephalus. However for some, and in some situations, they may not realise that they’ve done anything ‘wrong’. Even if they do, they might struggle to understand why or how they got it wrong. This can be upsetting. It may be even more upsetting if someone else gets angry or impatient. If they don’t understand the other person’s behaviour, a child or young person with hydrocephalus may become confused and upset. This can make it more difficult for them to think clearly about a situation.

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Getting angry / temper tantrums

If situations are confusing and we don’t know how to work it out we can become scared and upset. Without knowing why, a child or young person with hydrocephalus could become really upset or angry with someone. It’s not always about the other person. It can be about feeling lost when they can’t work out what is going on or how to make it better.

Example 3

John aged 15, often went to the shops with his Dad. John liked to talk to shop assistants but his Dad often found this stressful and embarrassing. John would refuse to move on even when the shop was really busy or they were running late. When this happened they rarely left the shop without a row.

John’s Dad tried using a reward for doing the shopping quickly: lunch at John’s favourite café. But this only seemed to work a few times. Then Dad decided to work out a ‘shopping plan’ with John. They talked about:

  • What a shop assistant does: why they can only stop for a short time.
  • The reasons for going shopping.
  • Ways that John could help like: using his own list or pushing the trolley.

Later Dad asked John questions to check he understood. He had to remind John a few times before John seemed to get it. Together they wrote down a few reminders. They use these in the car on the way to the shop.

John’s Dad popped into the supermarket and asked the staff he saw regularly to help him out. Members of staff ask John what is on his list and direct him and his Dad to the right aisle. Most of the time this works well and John is distracted from chatting even when he has forgotten the rules. For now, shopping trips are generally easier for John and his Dad. Dad knows he might need to try something different after a while.

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Self-centred behaviour / thoughtless

Sometimes it might feel like a child or young person with hydrocephalus is being self-centred or thoughtless. Perhaps they don’t share or perhaps they just expect you to do everything for them. Maybe they won’t stop or start things when you need them to. Or it’s a real struggle to get things done without an argument. Maybe they don’t realise that shouting or getting angry upsets you too.

This might be about routines that they have become used to (e.g. Mum has always picked up my clothes). We might want or expect this to change as children get older. A child or young person with hydrocephalus might need some help to follow new plans and instructions. They may need more help than others to learn what is expected of them. This could include rules and boundaries (see above).

There can also be changes in the brain that mean it is difficult for the child or young person to work out that their actions have an effect on someone else.

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Finding things funny when they’re not

A young person with hydrocephalus might appear to be happy or find something funny at the wrong time or in the wrong place. This could be because they don’t understand what is happening around them. This might make them anxious or uncomfortable. One way of dealing with this might be to ‘switch off’ and to think about happier things.

Sometimes people with hydrocephalus are just a bit more easily distracted and find it difficult to keep track of what is happening around them. They might just ‘drift off’ into their own thoughts. Or, maybe there is something in the situation that triggers a funny memory. Most people would know whether being distracted was right for the time and place. Someone with hydrocephalus might not be able to see the ‘big picture’ or be able to stop themselves from acting in an inappropriate way.

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Knowing when behaviour should change

Someone with hydrocephalus may find it hard to stop, think or change the way they are behaving even when it seems inappropriate. They might just get ‘stuck’. Their behaviour could seem like a problem to someone else. Others might think that the child is being naughty or just won’t do what they are told. There are lots of reasons that the child or young person might have made a mistake. If they have made a mistake, being told off could be very confusing and might make things worse.

Take a deep breath and think!

  • How much does it matter?
  • Maybe it’s best to ignore it?
  • Perhaps distracting the person would help?

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What to do if someone is ‘stuck’ in what they are doing

Distracting someone when they are ‘stuck’ in what they are doing might not always work. It is even harder if they are upset. But, staying calm and talking about something the child likes is always worth a try. Having clear boundaries and using them when they are needed can also help (see above). See Flexibility in thinking and doing for more ideas.

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Tiredness / fatigue

The brain needs a lot of energy to work well. A child or young person with hydrocephalus might be working really hard to try and stay focused at school for example. Trying to keep up with friends might be hard work. Or if their day has gone badly they may feel worried or upset. All of these things make the brain work harder and can cause increased tiredness.

Home is usually where a child or young person feels safe and secure. Even when they really want to be there and they really want to behave well, it might be the safest place to ‘let go’. Their tired brain needs to rest so they might find it harder to keep their actions on track and to make the ‘right choices’. They may not be able to stop themselves from becoming upset or ‘over-reacting’ to the smallest things.

Example 4

Louis was 14 and had just started to do all his exam subjects at school. After a few weeks Louis’ behaviour was becoming a real problem at home. He was nasty to his little brother and the way he spoke to his Step-mum was just awful. On a few occasions she became worried that Louis might get physically aggressive. The situation was just unacceptable.

At first Louis’ parents gave him some new rules:

  • Computer games ONLY once homework was done.
  • Homework in the quiet room.
  • Removal of computer games when he was at all aggressive towards anyone. If it continued: no going out with friends at the weekend.

Louis worked quite well in the quiet room but sometimes he just couldn’t get started and would get upset even when his Step-mum tried to give him a snack. Cooking his favourite meal or missing games club at the weekend didn’t seem to make any difference. This seemed to be more than just teenage hormones.

After talking things through with Louis and his teachers, his parents found that he was doing really well in most classes except one. He was working well with teachers and his classmates. His computing classes were at the end of the day and he was struggling in these even though it was his favourite subject.

Since agreeing to drop one subject and working out a different homework schedule, Louis is coping much better. He still gets tired but doesn’t lose his temper so often.

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Key steps to knowing what to do at different times and in different places (what the brain does)

When we are working out how to behave in different situations lots of different things need to happen in the brain. Hydrocephalus can change the way the brain works. This sometimes means that the brain can’t do all the things it should do: some of the brain’s processes may not work so well. Clicking on any of these links will tell you more about the different processes that are used when we think and act in different situations. We need to:

  • Remember how to behave in a place or situation.
  • Notice things (cues) that help us work out what to do or tell us to change what we are doing.
  • Pay attention to the things (cues) that matter.
  • Understand what the cues mean.
  • Plan what to do.
  • Put the plan into action by expressing ourselves in speech or action.
  • Realise when the plan is no longer right for the situation.
  • Change what we are doing.

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Take time to reflect

You might find it useful to do this with your child or young person. Or it may be something for you to think about if talking might make them more confused or upset.

  • Could they have made a mistake?
  • Is this similar to things they have done before?
  • Does it always happen in the same place / at the same time of day?
  • Why might it have gone wrong?
  • Could we do things differently?
  • Could we have a plan to use if things do go wrong?
  • What rewards or boundaries could I try?

Remember that every child changes as they grow: their ability to think things through and work things out naturally changes as they get older. See ages and stages for more information.

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Want more ideas?

You can find other ideas on Netbuddy. Please note this is an open forum so any guidance or advice given is not reviewed, validated or endorsed by SSBA.

You may also be interested in advice from the NHS Carers Direct portal.

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