Daily Care

Dressing is a super activity to work on with a child with CP:

• It is already part of daily routines – so in not an extra thing to fit in
• It involves many different skills e.g. balance, hand function, sequencing etc
• It can be used with all types and levels of Cerebral Palsy
• It has a useful end result!

Here are a few pointers to consider:

Level of ability

Children of all types and levels of cerebral palsy can get involved with un/dressing. Regardless of a child’s individual challenges, with patience and time, it is possible for them to learn ways they can actively participate in the process. This is particularly important for children who are dependent for most aspects of their care. By learning how they can get involved, they are less likely to become ‘passive’ (letting everything be done for them) and instead have a drive to also engage in other ways. Easy ways to engage is asking them to choose what they want to wear or whether they want to do ‘tops or bottoms’ first.

Being realistic with time

Mornings are usually busy. Everyone is in a hurry and there is not usually time to spare. It is often easier to dress a child rather than use this time for learning and development. Sometimes evenings or weekends are more realistic – set aside specific time rather than rushing the task.

Undressing / Dressing?

It is usually much easier to remove clothes so start with undressing. Taking off pyjamas, socks and slippers are usually a good place to start as these items are also loose-fitting. Starting with more manageable steps helps the child feel successful and more inclined to try harder parts later on.

Grading tasks

Occupational therapists will often recommend that tasks are broken into smaller, manageable steps using what is called:

1. Back chaining: This is where the adult does most of the task but gets the child to do the last step.  Once they have learnt that step, they are encouraged to do the second-last step….and continue working until they have learned all the steps.
2. Forward chaining: getting the child to do the first part of a task, then the adult completing the rest of the task for them. Once they have mastered the first part, they are encouraged to do the following step too, and so continuing to work through the sequence of steps.

When using a chaining method it is important to wait for the child to master one step before proceeding to the next, even if this takes a long time. Additionally, for some children it may not be physically possible for them to master all steps – but it is important that they are expected to what they can do.

Managing when arms feel stiff/hard to move

This is a common difficulty for many children with cerebral palsy. When putting tops on, deal with the sleeve on the tighter side first. When removing tops, allow the more flexible arm to come out first. Therapists will be able to provide more individual-specific ideas on how to manage tone to help with this.

Choosing clothes

The type of clothing used when practising dressing can have a big impact on how a child learns and/or if they keep motivated or quickly become frustrated.  It is important that any child learns the technique first, and then learn to do it in more tricky situations.  For example:

• When learning buttons - start with big chunky buttons, not a school shirt.
• When learning to get tops on/off – start with a larger sizes/loose-fitting t-shirt of jumper.

Generally, stretchy clothes including trousers/skirts with elasticated waists are easier. Consider buying the next size up especially if getting arms through sleeves is a struggle. Many high street brands now try to provide ranges of clothes and shoes more suitable for children with additional needs.

Have fun!

Children are more likely to learn and be prepared to repeat something when they find it fun or it appeals to their competitive nature, for example:

• Dressing up costumes
• Trying on mum/dad / big brother/sister’s clothes
• Hoops & Hairbands game (adult places hoops/hairbands onto child’s legs/arms. The child has to remove them. This can be done with a timer, or simply count how many they manage. Start with loose hoops and work towards elasticated hair bands.) When they get good at this, then switch so they have to try getting them all again.

Young children are quick to adapt to their limitations. The only downside is, in compensating for a limitation in movement they may also form bad habits.

Moving in restricted ways means a child can use some muscles too much, and others not enough. As a result, certain muscles aren’t encouraged to lengthen and stretch as they would in a natural pattern of movement. If not used, the muscles can shorten and this is how contractures can develop.

“I worked with one little girl who kept tripping over in the playground. She was very able, she just needed some extra help to improve her balance.” Lesley, Cerebral Palsy Scotland physiotherapist

Problems with mobility aids

Like a pair of new shoes or glasses, it can take time to adjust to a mobility aid such as a standing frame or wheelchair. If you feel your child is only tolerating their equipment it is best to get to the bottom of it.

Equipment may be uncomfortable if your child has taken a growth spurt and certain muscles have become tighter and joints are not as easy to position. Your child may not like the feeling of being ‘restrained’ in equipment – building up time in spent in equipment can be useful. There may be ways to make it more enjoyable, such as only standing to eat or doing artwork.

Your child may need some help doing some gentle stretches of certain muscles if they are going from one position to another, especially if they have been in one position for a while, for example, sat in their wheelchair before going in the stander.

It is important to check your child’s posture and movement patterns in equipment/walking aid to monitor the optimal time spent using them - fatigue often impacts on their quality of posture/movement. Aim for quality of posture and movement for shorter periods (maybe with intermittent rest periods) whilst still encouraging your child to actively participate in daily life.

Talk to your physiotherapist or occupational therapist - together you can work out how to identify why equipment is uncomfortable or perhaps too challenging? Your therapist will be able to look at your daily activities and find the best way to make it work with your family’s day.

“Sometimes the problem is psychological, some children don’t like using their walker or splints because it makes them feel different. One little boy wouldn’t wear his splints because he said “Superheroes don’t wear them.” When he came to the Centre he saw another little boy wearing them and said, “I’ve got one like that.” Finding local opportunities for your child to see other children wearing or using similar equipment can work wonders.” Lesley, Cerebral Palsy Scotland physiotherapist

Tips for holding, lifting and carrying

Whenever you are moving and handling a young child with cerebral palsy it is paramount that you are looking after your own back care. It is important that moving and handling risk assessments are carried out and reviewed, especially as your child grows and when it is appropriate to introduce alternative ways to do this, such as using a hoist.

The way you handle, move and position a child can help to control any muscle stiffness or uncontrolled movements. A physiotherapist will be able to guide you but here are some general tips:

• Try to keep movements gentle and smooth, give muscles time to tense and relax and respond to changes in position.
• All children need time in different positions, such as on their side, on their tummy as well as on their back.
• Offer reassurance as you move a child so they feel relaxed.
• Swap sides when you cuddle so you help them use muscles on different sides each time.
• Remember to praise the little achievements as well as the big ones.

Being able to communicate and know we are being understood is important to everybody. Many children who have CP can communicate with speech. Some children may have difficulty coordinating their breathing and the muscles used to make speech. Many will communicate using a variety of Alternative & Augmentative Communication (AAC) methods, including signing, eye/hand pointing to symbols or using communication devices.

Regardless of what a child uses or is being encouraged to use to communicate, there are some useful basics to be aware of:

Consider your position.  Get down to the same level as them. Make sure you are not standing in front of a bright window/light source.

Make good eye-contact whenever you can.

Talk to them! Explain what you are doing. Offer choices between toy or food options. Ask if they like/don’t like something. If your child is using a method of AAC, then you try using it too. Modelling in this way will help them to learn lots about how to communicate.

Watch and listen for signs of communication. Expect your child to communicate. Facial expression, body language, eye movements, whole-body movements and vocalisations are all ways in which children indicate what they feel/think about something. Feedback to them what you think they are telling you.

Allow time. Children are not little adults – they can take longer to process information or understand things.  Allow enough time for them to take in and think about what they have been told…..and to then respond.

Be honest when you are not sure what they have said/are trying to say. Pretending you have understood is not helpful for anybody. It can be particularly frustrating for the child, and potentially confusing if the outcome does not fit with your response.

Some children with cerebral palsy find it difficult to get a good sleep. This can be due to a number of factors, including: being unable to get into a comfortable position, having muscles spasm in the night, or needing to be regularly turned which disrupts their sleep.

Sleep is an aspect of having CP that can often be overlooked. Spending some time exploring and trying different strategies can help contribute to the overall wellbeing of the child and the whole family. Below are just some areas for consideration.

Positioning

There is a range of different types of ‘sleep systems’ available. These include a variety of soft/firm supports and cushions to help provide a healthy and comfortable position in bed. Very often these can be quickly adjusted to allow for changes in position. Sometimes a simple solution is adequate: V-cushions, maternity cushions and different density cushions can all be used to improve alignment and comfort. A child’s physiotherapist and/or occupational therapist will be able to provide individualised advice for children with CP.

Sensory issues

Temperature:  Where a child is prone to feeling cold through the night, or where nightwear/bed-covers end up being wriggled off – onesie suits can provide a good solution (while being mindful of them not getting overly hot).

Regulation:  Some children may have specific sensory difficulties where they may go from a state of deep sleep to being wide-awake, without the drowsy middle-stage.  This can be very unsettling, and upsetting, for a child.

“Waking up quickly can be very common with premature babies. Part of our job is to work out ‘why does the child do this?’ Is it a motor or a sensory issue?” Petra, Cerebral Palsy Scotland occupational therapist 

Behavioural issues

Children with cerebral palsy are no different to typically developing children, in that many need to learn the routines and expectations of sleeping at night. Children who have additional needs can take longer to learn this, which is an additional source of (physical, mental and emotional) stress for families. The good news is that there are a number of organisations who can provide support or who have produced informative and helpful resources, including:

• Sleep Scotland
• Cerebra Centre for Neurodevelopmental Disorders
• Sleep Problems factsheet from Capability Scotland 

Successful toilet training depends on a range of factors.

Current habits

Before starting toilet training, consider if the child demonstrates readiness for this:

• Does the child currently demonstrate any bowel/bladder control?
• Does the child show any awareness of being soiled/wet?
• Does the child express that they are unhappy to be soiled/wet?
• Does the child show interest in any aspect of the toileting routine?

Positioning

Being able to sit on the potty/toilet, or having an appropriate supportive potty/toilet-chair is very important. Sitting with feet dangling, being fearful of ‘falling down the hole’ or not being adequately and comfortably supported will all result in the child’s muscle tone increasing. In order to do the toilet, the muscles need to be able to relax. Simple solutions include ensuring that feet are supported on a surface or using reducer-rings. An occupational therapist will be able to advise on more complex seating solutions and strategies.

Trunk activity

Activity has a beneficial effect on the gut. If the child’s tummy is not engaged there will be less/no pressure on the bowel to get things moving. Keeping active should help. Specific ideas can be provided by a physiotherapist or occupational therapist who knows the child.

Routine

While some children quickly toilet train, for many it takes time. Toilet training is about learning a new habit.  This requires consistency, time and patience.  When embarking on a toilet training programme it is useful to:

• First take note if there are any patterns as to when the child wets/soils. Monitor over a few weeks. This information can be used when deciding when to take the child to the potty/toilet/toilet-chair.
• Choose realistic times: winter vs summer, term vs holidays, before vs after a time of transition.
• Teach/Explain: don’t assume the child knows what you expect
• Allow adequate time to relax and eliminate.
• Be patient! Accept there will be accidents along the way.

Getting specialised advice

Some children with cerebral palsy may have medical conditions that can prevent them successfully toilet training (e.g. bladder muscle-control problems).  This can be discussed with a Paediatrician or Continence specialist.

Bowel & Bladder UK have produced helpful toilet training and other resources.

It is common for some children with Cerebral Palsy to require assistance with eating and drinking.  They may have difficulty maintaining a grip on cutlery, in bringing food to their mouth or specific issues with sucking, swallowing or chewing.  Specialist Occupational Therapists and Speech & Language Therapists can provide individualised advice on positioning, feeding programmes and equipment which could help.  Below are some basics to consider:

Positioning

Ensure the child is sitting or standing well.  For more mildly affected children this will mean ensuring their feet are on a surface and their table in at waist-height.  For more involved children – this can involve using supportive equipment that has been set up for them.  Many services provide equipment profiles – check this before starting as it will contain child-specific information that can help.

It is usually best to assist a child from the same level as them.  Being too high can result in them tipping their head back (to look up) and make their swallow unsafe.

Timing

Feeding can be a question of timing – in a very active child, it’s easy for food to trickle down the back of the throat.  Other children may take a long time to process what is in their mouth.  When assisting a child to eat (or to learn to eat themselves) it is important to be aware of the speed assistance is given in relation to what is possible for the child to cope with.

Refer to existing Eating & Drinking Profiles.  Most children who have a specific difficulty with eating &/or drinking will have been provided with information by their Speech & Language Therapist or Occupational Therapist.