In this page …
- Learning to get organised
- Everyday routines
- Sticking to routines (what happens in the brain)
- Why hydrocephalus can make it harder to stick to routines
- Getting organised for something new
- Finding belongings/losing things
- Remembering/doing homework
- Organising a social life
- Lack of initiative
- Want to know more?
Learning to get organised
We don’t expect small children to be organised. Most things are done for them. As children move through ages and stages of growth they learn to become more independent. We hope that they will learn to do lots of things alone and perhaps without being asked: going to the toilet; getting dressed; brushing their teeth; and perhaps getting to school alone when they are old enough.
This section looks at why getting organised can be harder for children and young people with hydrocephalus.
Every day we follow routines that we hardly think about: getting dressed, eating lunch, going to the toilet. For most people where we are, the time of day, or signals from our bodies let us know that we should start these things. Often we don’t even need to think about it, we just do what we need to do because we’ve done it lots of times before.
A child or young person with hydrocephalus may seem to struggle to get into daily routines. This can be frustrating and upsetting for everyone. We may think that they ignore our requests to do things and this can make us angry. Or we may be upset that they don’t seem to manage things that their friends or younger siblings can do.
Lucy is 13 and has twin brothers who are 6. They need lots of help getting ready for school. Lucy’s Mum and Dad take it in turns to help them because Mum and Dad have to get to work too.
Recently they have been asking Lucy to get her clothes on, brush her teeth and get her school bag ready herself because she is the oldest. Some days Lucy does quite well but there are lots of days where she loses track or just can’t get started. This can make Mum or Dad really cross because they’re busy and usually in a hurry.
Lucy gets upset and angry when Mum and Dad get cross. She shouts and often won’t come out of her room. Lucy doesn’t like the way this makes her feel. She wants to help out but finds it really difficult. Lucy really doesn’t want to shout at her Mum and Dad but she just can’t help it.
Mum and Dad realise that Lucy is going through lots of changes because of her age and so some arguments are to be expected. They spend time talking to Lucy about what she finds tricky. They agree to try:
- Laying out clothes and packing her bag the night before.
- A reminder on Lucy’s mobile phone that tells her to follow her morning routine.
- A step by step picture guide to Lucy’s morning routine, stuck to the front of her wardrobe.
- A second reminder on her phone, just to check she’s on track.
Mum and Dad also try to reduce morning stress by setting their alarm 15 minutes earlier. This gives them a bit more time to support Lucy so that there is less rushing and stress in the house generally.
Lucy finds her new routine much easier to follow. She feels more confident and independent. Occasionally she takes a while to get going (like anyone in the morning) but generally there are far fewer arguments. Mum, Dad and the twins get out of the house in good time and in better moods.
Sticking to routines (what happens in the brain)
We usually manage to stick to routines without thinking much about them because we have a ready-made plan. Someone with hydrocephalus might not find it so easy to follow routines. This could be because of changes that happen in the brain when someone has hydrocephalus.
To make routine things happen we need to:
- Notice that there is a signal to start: a cue.
- Link the cue to the right memory.
- Understand what it means we should do.
- Work out whether we can or should carry out the routine now.
- Use this decision and the memory to plan.
- Start acting on the plan.
- Use the plan to do the things that will get what we need or want.
- Keep checking that all is going according to plan.
Why hydrocephalus can make it harder to stick to routines
Someone with hydrocephalus could have problems with any or all of the things that need to happen when we carry out routine activities (see above). Perhaps the person just can’t get started or they get started and get distracted part way through. It can be difficult to know where things have gone wrong but we can do things to help.
On Thursdays, Jason (aged 14), had gym at school. This meant he had to pack his gym kit along with his other school things. Jason never seemed to remember and if Mum or Dad forgot to ask him, he often left it at home.
Jason had a calendar on his bedroom wall. This helped him to remember lots of different things like parties or club times. Jason was used to looking at his calendar every day. Mum and Dad got some stickers and in a bright colour wrote ‘PACK YOUR GYM THINGS’. They put a sticker on every Thursday on the calendar (except holidays). Jason remembers to pack his gym things most weeks.
By thinking about what goes wrong and how, you might be able to give some clues to help your child follow a routine. It might take patience and a lot of trial and error to find the right ways to help. See following plans and instructions for some more tips.
Getting organised for something new
Many children try out new hobbies or join new clubs, for example. Or perhaps they want to get to a friend’s house but have never been before. Working out what to do is like solving a problem. The brain uses information that it already has, to come up with a plan to make dealing with the new situation easier.
Children often need help to come up with the right plan. Parents, teachers and carers will usually make a plan for younger children and then give them instructions about how to follow it. As they get older, children are expected to be able to plan and get organised themselves. Whatever their age, a child or young person with hydrocephalus may find it hard to solve problems and come up with or follow plans. They can’t get themselves organised in the way they should. Click on the links above to find out more about how changes in the brain make ‘getting organised’ more difficult.
Finding belongings/losing things
Most people organise their belongings so that it helps them remember where things are, e.g tops like t-shirts and jumpers may be put in the same drawer; bowls will be found in a crockery cupboard; and a toothbrush will be found beside the bathroom wash basin. It may be more difficult for someone with hydrocephalus to learn and remember where everything is but this might easily be solved with labels on cupboards and drawers.
It is more likely that someone with hydrocephalus will misplace their belongings. This may be because they have forgotten where they usually go, or they have not been organised about where they have put them. Sometimes this is because they have not paid attention to where they put something down or where they last had it. This is irritating for the young person and others around them but they may have no control over being distracted: they may not be able to stop or inhibit a response to something else.
Jasmine always seemed to lose things. She’d been through several pairs of gloves and needed a new pencil for school every couple of days. Often the lost things were found days or weeks later in unexpected places. But they never seemed to be found when they were needed.
Jasmine refused to have her gloves attached to her jacket – she was 12 after all! But, she did agree to having pictures put inside her locker door at school and in her cupboard at home. The pictures remind her where to put her gloves when she takes off her coat.
Jasmine also has a picture of a pencil and pencil case inside the front cover of her homework diary to remind her to pack these when she’s putting things back in her bag at the end of class.
Jasmine still gets distracted occasionally, but the pictures help her to check where her gloves or pencil have got to and put them in the right places. She loses these things less often now.
It can be frustrating when a child or young person has a vague idea that they had some homework but can’t remember what. There will also come an age where we might expect a young person just to get on and do their homework without being told. Children and young people with hydrocephalus may struggle to follow homework plans and instructions. They may struggle to get into a routine.
Josh had recently started high school. His parents were worried because Josh didn’t seem to get as much homework as his sister had when she was in her first year. When they checked with the school they found out that Josh had missed some homework. When they checked his homework diary they couldn’t find a note of it.
Josh’s parents arranged a meeting with the school and Josh went along too. When they talked about it together Josh said he often struggled to find time to write down his homework. Sometimes this was because he was finishing off his class work. Sometimes he hadn’t finished writing it down before it was time to pack up.
Josh asked his Deputy Head Teacher if he could use his mobile phone to photograph the board. Some teachers didn’t like this idea so they agreed to email homework tasks to his parents every week. Others gave Josh a photocopied note or a class assistant made sure he had it written down.
Once all his teachers got into the above routines, Josh didn’t have issues with remembering his homework. It was still hard to get him to do it though!
Even when the child knows what the homework is, getting it done can be difficult. Some children may find it hard to get started and others may lose track part way through. Staying on task and concentrating can be difficult for some children with hydrocephalus.
Organising a social life
As children get older we might expect them to take more responsibility to organise different things for themselves. Some of these may be practical daily things like dressing, bathing and homework, as mentioned above. As children reach their teens it might also be expected that they’ll want to go places with friends.
Young people with hydrocephalus may be less inclined to do this. This could be due to general difficulty in planning what needs to happen and when, or putting the plan into action. It may be a sign that the young person is finding it difficult to get on with others.
Lack of initiative
A person might be described as lacking initiative if they:
- Don’t seem to take on any responsibility as they get older.
- Don’t seem to respond in a way that a situation demands, e.g. answer a ringing phone or taking a coat off when it’s hot.
- Don’t seem to want to do or plan anything for themselves or others.