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Following plans and instructions

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What are plans and instructions?

Plans and instructions are like lists of things that have to be done to make something happen: to reach an outcome or goal. We may have plans for things we do every day like getting a child to school. There are instructions that we recognise and that we might expect children to recognise like: “Time to put your coat on.” An instruction like this is a signal (a cue) to put a plan into action.

Sometimes plans are less well known because we only do them now and again: like going to the cinema. Or, we may use a different instruction because something has changed: “You’ll need an extra jumper and your raincoat because it’s cold and wet outside”, for example.

At home and at school children and young people hear lots of different types of instructions. Some are about daily plans and routines. Others are about learning or doing new things. A new plan or set of instructions could be about a trip to the zoo or how to solve a maths problem, for example.

It can be frustrating when a child or young person seems to ignore instructions or never seems to stick to a plan. For someone with hydrocephalus this may be because they don’t know how to follow a plan.

This section looks at reasons why.

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Everyday plans and instructions

As we grow we learn everyday routines. These routines are like plans that we hold in memory. Many of these plans are about organising ourselves. We start them because we have a need to change something or make something happen. Feeling hungry or uncomfortable for example, are ‘internal cues’: signals from our body to start something. If we start an activity because of the time of day or because someone tells us to (they give an instruction), these are ‘external cues’: signals from the world around us that let us know we should do something. Ability to follow internal or external cues can be affected by hydrocephalus.

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Getting started

Starting or initiating a plan needs lots of things to happen in the brain. Hydrocephalus can disrupt the brain’s processing in different ways. So, even when a child is given a very clear instruction, they may still fail to act on it. Even when we think they should know an everyday routine really well, they may still fail to do it without prompting.

Example 1

Joe is 8. Recently his Dad had been asking Joe to get his clothes on for school. He was sure Joe could do it. They’d been through the routine together lots of times. But, day after day when he was called for breakfast Joe still had his pyjamas on. This made them late. So, for a few mornings Dad laid out Joe’s clothes and gave him a bit more time to get ready. Joe still didn’t get dressed.

When his dad asked, Joe said he couldn’t find his clothes even though Dad had laid them out. One morning, Joe’s Dad stood in his room and said each bit of clothing in the order it was to be put on. Joe got himself dressed but Dad hadn’t made breakfast! Dad realised that it wasn’t that he wouldn’t get dressed - Joe needed a reminder to get started and a reminder for every step.

Joe’s dad wrote a list and managed to sing it along to Joe’s favourite tune. He spent days playing the tune on a CD and singing the ‘getting dressed song’ until Joe got the hang of what he was to do. Now Joe’s dad puts on the CD and Joe sings along and gets dressed. At some point Joe will grow out of the song and his Dad will need to think of something else. Or perhaps Joe will have learned the routine well enough by then.

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Experiment! Try new things

Making up a rhyme or a song may be easy and enjoyable for some people and others may hate the idea. Sometimes just making and repeating the link between doing something and a familiar signal (or cue) will be enough. Many children are accustomed to ‘tidy up’ music in class for example. So, perhaps you could link plans and actions to your child’s favourite songs.

It may not be music that works for your child; perhaps it’s an alarm, a check-list or a picture guide (e.g. a list of pictures showing each step of the process). Different things will work for different people. You may need to try out a few things to find something that works: something that helps your child’s learning so that they know what to do or how to behave.

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Following less familiar plans and instructions

When we want to do something that only happens occasionally, like going to the cinema for example, we might rely on a less familiar plan. Or, there might be something different about the situation that means a well-known plan won’t work this time round e.g. going to a different cinema from usual. The basic plan is held in our memory. Something that happens or is said (a cue) will remind us and make us think about what we’ve done before. The memory will include what we have learned about it: where it happens; what to do; how we usually feel; whether we like it and so on.

When a plan is not as well-known or needs to change, it is less ‘automatic’. It could be difficult for all the reasons above (see ‘Getting started’). But the brain also needs to work harder to decide what to do and then put it into action. These things can also be made difficult by changes in the brain caused by hydrocephalus.

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It doesn’t matter whether a plan or instruction is new or familiar, people tend to be more motivated to do the things they enjoy. But most people can see why they need to do things that are less pleasant (like going to the dentist). For example, if you want healthy teeth you will go to the dentist even if you don’t like going. You are motivated because you can see that going will help you reach your goal of having healthy teeth.

Sometimes it is difficult to help someone with hydrocephalus understand why they should follow a plan that they don’t like. This may be because they get ‘stuck’ in their own thoughts and reasons for not wanting to do it. Helping the child to understand may depend on their age and stage, but you might be able to motivate them using a nice thought or a reward.

Example 2

Rachel, aged 11, wouldn’t get her things together to go to the hospital clinic. When they went on any other trip, Rachel happily packed the things she wanted e.g: a book; some pens and paper; a packet of tissues; a drink and a snack. But, Rachel never seemed to do as she was asked on clinic days. She would disappear into her bedroom and seem to forget that they had an appointment to keep. Mum often ended up shouting.

Mum watched Rachel at clinic and realised that Rachel found the whole thing quite uncomfortable. She didn’t like being asked personal questions and she didn’t like being poked and prodded.

One thing Rachel really enjoyed was buying nice things to put in her hair or new nail varnish. Mum agreed with Rachel that if she got herself ready and they got through the clinic without a fuss, they could go and buy something new after it as a treat.

Rachel still doesn’t like going to the hospital clinics but she does like the treat after. When her Mum reminds her about the ‘after clinic treat’, Rachel is motivated to get ready and go.

See the section on knowing how to behave for more tips on what to do if you think your child or young person either can’t or won’t behave in certain situations.

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Following new plans and instructions

Following new plans and instructions means learning how to do something you’ve never done before, eg how to do a new type of maths problem. Knowing how to solve the maths problem is like learning a new plan: a set of steps that need to be done to reach the answer (outcome or goal). The brain has to do lots of different things to learn new information and new ways of doing things. To find out why this might be difficult for a child or young person with hydrocephalus, take a look at the page on learning.

Sometimes we introduce a ‘new’ plan or instruction because something has changed and the usual plan won’t work.

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Dealing with change

Family life is busy. School, work, clubs, meals, shopping and play are among the many things that we need to fit in. People often get very comfortable in their daily routines and patterns but there are always times when routines need to change. Often these changes are good things, like a day out or something different to eat. Sometimes changes are necessary perhaps due to work or illness, for example. Whatever the reason, it can be difficult for everyone when a child reacts badly to a change, doesn’t want to try new things or just won’t ‘go with the flow’.

If a child or young person reacts badly to change it is tempting to think they are just stubborn, or won’t do as they are told. However, the brain needs to do a lot of work to cope with changes. Hydrocephalus can disrupt the way the brain works which means that coping with change can be very difficult.

Example 3

Grandpa sometimes collected Michael (aged 9) from school. Unfortunately, Michael often became distressed when Grandpa met him. This upset Grandpa. On days like these, Michael only calmed down when Mum arrived, but even then he was not happy with Mum.

Mum wasn’t sure why Michael got so upset when Grandpa picked him up after school because usually he loved seeing his Grandpa. These are the things Michael’s Mum tried:

  1. They talked about it several times the night before.
  2. Mum asked Michael to tell her the plan in the morning to check he understood and remembered.
  3. Mum asked the school (via e-mail / note) to remind Michael, that afternoon, that Grandpa was on pick-up duty.
  4. Mum agreed with Michael that she would paperclip a photo of Grandpa to the front of his homework diary, on those days, to remind him.
  5. Mum wrote a simple short story that Michael took to school. It told Michael what would happen and when, and why it was a good thing (eg Michael’s Grandpa is happy when he can take care of him. This is good and it’s OK that Michael won’t see Mum until later).

Mum had to try out all the different things above until she found what suited Michael best. Eventually they settled on a way that works most of the time (using 1, 2 and 4) and Michael is now able to cope with this change in routine.

There could be a number of reasons that children and young people find coping with change difficult and everyone is different. Finding ways to help them cope may need lots of patience and trying several different approaches.

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Key things for following plans and instructions (what happens in the brain)

Following plans and instructions needs lots of different things to happen in our brain.

The brain does all these things to make sure we:

Any or all of these steps could go wrong for someone with hydrocephalus. But there are ways to make things easier and less stressful for all concerned.

Example 4

Ellie, aged 8, seemed unable to do what her teacher, Mr Green, asked her. She often distracted her classmates with chatter and questions. Not only did Ellie fail to get her work done but her classmates did too. Sometimes Mr Green had to tell Ellie off and this upset her and caused even more disruption. Occasionally Ellie had to leave the classroom. Not surprisingly there were mornings when Ellie said she didn’t want to go to school.

Mr Green noticed that Ellie tended to ‘drift off’ when he gave the class instructions. She also struggled to follow new lessons. Sometimes there were lots of things to remember and it could take a bit of time to explain. So, Mr Green asked Ms Thomson (Ellie’s learning assistant) to write cue cards that reminded Ellie how to behave and that broke each task down into parts that Ellie could do. Mr Green or Ms Thomson gave Ellie the cue cards in order and at the right time. Some of them had pictures on to help Ellie understand what to do.

Ellie now manages to get through most tasks using the cue cards to remind her how to listen and what to do first. She even remembers some of the everyday plans without cards. Using cards also helps with new tasks. Ellie feels happier about new tasks as long as the cards are there.

Mr Green is really pleased with the progress Ellie is making and rewards her regularly. Ellie is feeling better about school and, most of the time, she’s much happier about going.

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Things to think about for plans and instructions (some quick tips)

A child’s age or stage of development.

  • As children get older they can usually deal with more information. They can also take more responsibility for themselves.
  • If your child seems out of step with their classmates or friends think about what they find difficult and when.

Is the plan new or unfamiliar?

  • Think about what your child already knows and what they can already do.
  • They may need extra help to understand and follow a new plan or instruction.
  • They may need to see pictures of it, try it, or you may need to tell them about it more often.
  • You might need to ask them to tell you what the plan is in their own words so that you know they understand.

Is it long or complicated?

  • There may be too much information to take in. Or perhaps it’s too difficult to understand.
  • Think about how plans and instructions can be broken down and given in a way that is easy for the child / young person to understand.

Is it happening at some point in the future?

  • Think about whether talking about it too far in advance will make the person anxious (they may be anxious because it’s new or different; because it’s something they don’t like; or because they’re worried about forgetting).
  • If you think the child or young person might be anxious for any of the above reasons, think about how you could deal with that.

Is it busy or noisy when carrying out the plan or instruction?

  • There could be lots of distractions that stop the person from getting things done.
  • Think about how to make it easier for the person to concentrate on what to do. You may want to use some of the tips about breaking plans down.

Finding ways to make it easier for a young person with hydrocephalus to follow plans and instructions will make it easier for them to do what is expected. This will make everyone happier. It might also help with the young person’s learning.

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Want more ideas?

Some of the difficulties seen in children with hydrocephalus are also seen in children with other conditions. This does not mean that a child with hydrocephalus has another condition. It just means that the brain may have been changed in similar ways. So, some hints and tips might also work for a child or young person with hydrocephalus. You can find useful ideas in these sites:

Why can't they remember?

How to give good instructions to children

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