Fatigue: a common occurrence for children with cerebral palsy

Some children with cerebral palsy show a Jekyll and Hyde personality. In school they are seen as happy and smiling but when they get home they are cross, unhappy, bad-tempered children – at best! At worst, they are withdrawn and uncommunicative!

Cerebral palsy does not cause split personality and, usually there is one defined cause – they are overtired. This often applies to children with other neurologically based difficulties such as dyspraxia.

To begin to unravel the way they behave - they do not realise that everyone is not suffering in the same way as them. They have always had to struggle through the day and they have always felt pain and fatigue but they have never known that this is not the way it is meant to be – so they have just put up with it.

Parents and teachers have difficulty discussing this as they both genuinely see a different child. The child is genuinely smiling in school and will swear black is blue that everything is all right. The child is genuinely deeply unhappy and bad-tempered at home. The logical conclusion is that school is hunky dory and home is somehow causing the problem.

Cerebral palsy causes fatigue

Cerebral palsy causes fatigue for all children. Whether it is the postural control needed to sit up in a chair or to walk around, there is some or considerable extra effort involved. Additionally many children with cerebral palsy need to put extra effort into listening and screening out unwanted sights and sounds. Some may need to put extra effort into speaking or recording work. Some may need to put extra effort into socialising.

Consider having to do the job you do in a country where you had little experience of the language and customs and where you could never sit down. This will give you some insight into what many children with cerebral palsy deal with on a daily basis. So why don’t they complain? If you have had to make this extra effort all your life, you will take a very long time to realise that it is extra. When I talk to children it is often the first time they realise that it is not normal to feel exhausted all the time. Children let their feelings show in the place they feel safest. This is why home very often sees cross, tired, unhappy behaviour when school does not.

Even when children are given permission to talk about their feelings by telling them that they are not alone and that many other children feel the way they do; many children say that they still feel they have to keep the act up in school.

“When I smile, people are not asking me if I am OK! I get sick of always being asked that.” (Boy 10, mainstream primary school)

“I smiled and smiled, and when they ask if I am OK I smile and say ‘yes, of course’. When I get home I feel evil and I shout and scream at my mother.” (Girl 11 – first term after secondary transfer.)

“I don’t want to be seen as different I grit my teeth and smile and they don’t know how much it hurts.” (Boy 14, mainstream secondary school)

Managing fatigue responsibly is the job of the adults in any situation not the responsibility of the child. Fatigue is a factor for all children with cerebral palsy. Managing fatigue is as much a part of the school day as providing a word processing package.

Other factors that may affect behaviour

Many children with cerebral palsy have sleep pattern abnormalities. They may have genuine difficulty in “switching off” the day and often only fall asleep when exhausted. Parents may be reluctant to discuss this because they feel others will judge them to be “bad” parents in not establishing a sleep routine. If we all acknowledge that this can be a problem for some children we can work together to deal with it.

Anxiety and oppositional behaviour

A study of a very large group of children with hemiplegia in mainstream schools found that 59% showed anxiety and conduct disorders (rormally around 19%). Anxiety and panic contribute to fatigue as the child is experiencing “fight or flight” moments throughout the day.

What can we do to recognise and address this before it starts?

• Manage fatigue out of the curriculum
• Cut down the amount of work a child has to do to demonstrate knowledge and understanding
• Cut down homework
• Have a fatigue management plan
• Offer many changes of position and activity.