Scope - about cerebral palsy. For disabled people achieving equality.

Many children find it difficult to settle and sleep through the night but, until fairly recently, little information was available about sleep problems and ways to resolve them. Lack of sleep can have an enormous impact on both the child and the family and affect the child's ability to reach his full potential.

Background

It is estimated that up to 20% of all two-year-old children and 5% of eight-year-old children wake regularly during the night. Approximately 12% of all eight-year-olds have problems settling to sleep. Research has shown that, whilst the vast majority improve over time, disabled children are more likely to have persistent problems in settling to sleep.

Causes of sleep problems

Sleep problems are not necessarily linked to a child's impairment and there are many possible causes to be explored.

The child may:

• not be accustomed to going off to sleep on his or her own;
• be upset by something happening in the family or alarmed by a frightening film or story;
• Have become used to extra attention caused through being ill or upset and may want this to continue.

Physical causes

Children with physical impairments may find it difficult to get comfortable at night or to change position. They may also experience discomfort caused by muscle spasm, incontinence or breathing difficulties. These difficulties should be discussed with the consultant or GP as medication may be available to lessen the effects.

Damage to the brain (such as that found in cerebral palsy) can cause specific sleep problems but most sleeping patterns can be improved with expert help.

Behavioural causes

Often a child has simply not settled into a routine or learnt about appropriate night-time behaviour. For instance, children with learning difficulties may not understand why and when they need to sleep.

Sometimes parents of disabled children may unintentionally add to sleep problems because they need to check their child regularly due to the effects of the impairment. For example, many disabled children need to be turned or moved in the night. This can make the child slow to learn that night-time is for sleeping.

Some children may use refusal to sleep as attention-seeking behaviour. 

The behavioural approaches suggested in this fact sheet have been tested by a number of families with physically disabled children and those with learning difficulties. The research showed an improvement in every child and 80% of the children's sleep problems were either resolved or improved very markedly¹.

Possible solutions

Keeping a sleep diary is a useful way of evaluating the problem. This should contain information such as:

• The number and length of naps taken during the day. A child who regularly takes naps during the day may find it more difficult to sleep at night. In this case, it might be worth trying to cut down on the length or number of naps by thinking of stimulating things to do to keep the child awake for longer periods during the day.
• the process of preparing the child for bed
• the number of times and period of time spent awake during the night

It can also be useful to log the times that certain drugs are given to the child. For example, medication used to control epilepsy might be responsible for causing sleeplessness. Giving medication at a different time of day might help the situation.

Research has shown that using a behavioural programme can help most children to some extent, regardless of the cause of the sleep problem.

A bedtime routine should be developed that the child will look forward to. It should be an opportunity for the child to have the parent's undivided attention for at least half an hour. This should be a quiet, relaxing time when noisy games, rough play, television and use of electrical equipment should be avoided.

Maximising a child's potential for sleep - a behavioural approach:

• Check that everything has been done to reduce physical discomfort. Discuss any drug treatment, its timing and any possible side effects with a Paediatrician.
• Ensure that the bed is comfortable and safe
• A child's bedroom needs to be prepared for sleep. TV, video players, music, computers all need to be removed or turned off and covered. Toys and all distractions need to be put away for the night. If possible use a blackout blind or thick curtains at windows and keep lights low or use a special nursery nightlight if the child does not like complete darkness.
• The bedroom is now clearly a "sleep room"
• Fix a set, age-related bed time. Use photographs, symbols or board maker to remind the child of what is going to happen
• Do the same thing every night e.g. tea, quiet play downstairs, preferably no TV or electronic devices in the hour prior to bed
• A light snack if necessary
• A calm bath, perhaps with lavender oil. However it is important to only add one or two drops of lavender essential oil to a bath depending upon the child's age. We would advise consulting a qualified Aromatherapist before using any essential oils as they are very potent and even a widely used oil such as lavender may have a negative effect on some people. Most essential oils need to be blended with a carrier oil in a specific percentage so always consult a qualified practitioner.
• Night clothes put on either in the bathroom or the child's bedroom

Once the child has had a bath he remains upstairs and bed time follows:

Into bed

Song/story/quiet music for ten minutes

Then lights down, music off, kiss and leave.

OR

Sit near the child, not on his bed and calmly ignore him. Pretend to read.  If he cries out or tries to get out, quietly return him to his bed and remind him that it is "sleep time".

No more hugs, stroking or conversation. Any extra attention after he has been settled will prolong the wakefulness and encourage habitual waking.

The following good practice may help:

• Wake the child at a regular hour each morning.
• Do not let the child have prolonged naps in the late afternoon.
• Keep a regular bedtime for the child.
• Make sure the child's room is quiet and dark.
• Keep room temperature to a comfortable level.
• Keep environmental noise to a minimum (e.g. no loud televisions). but gentle background sounds can be reassuring
• Make sure the child does not go to bed hungry but avoid drinks with a high sugar, artificial colouring, sweeteners and/or caffeine content before bedtime. Milk, water or very dilute fruit juice is best.
• Help the child become accustomed to falling asleep alone in his or her own bed, without the parent's presence.
• Avoid stimulating activity in the hour before bedtime, TV's videos and computer games all stimulate a child's mind.

It is important to set limits for bedtime behaviour and be firm about sticking to these limits. Children easily learn that difficult behaviour results in continued attention and postponement of bedtime deadlines.

Methods that may help change behaviour include:

Positive reinforcement i.e. if a child is praised for trying to sleep when asked, they are more likely to do so again. Reinforcement or rewards can be anything the child enjoys such as extra time with the parent, gold stars stuck onto a chart, an activity and so on. It is important that the child understands why they are being rewarded and receives the reward as soon as possible after they have behaved appropriately.

Establish a bedtime routine - it is important to choose a bedtime and stick to it. The routine should then consist of four or five quiet, calming activities such as having a biscuit, a story, a song or a music tape. This should last for about half an hour. Finally, the child should be settled into bed, perhaps with a special toy, security object or night light and the parent should leave the room whilst the child is still awake.

Gradual stages of change - this is useful if a child refuses to go to bed unless the parent stays with him or her. Instead of leaving the child to cry, the parents gradually distance themselves from the child over a period of time. This process could include gradually moving, over a period of weeks, from sitting by the child's bed to sitting outside the door or increasing the amount of time between the child waking or crying and the parent going to check on him or her.  This method works best with babies.

Diet

Drinks or snacks may have an effect on a child's bedtime routine all drinks with colouring or sweeteners can affect settling. Stick to milk, water or very dilute fruit juice.

Relaxation techniques or complementary medicine

Although they will not be able to cure problems directly, the use of relaxation techniques or complementary medicines may reduce some effects of the impairment, thereby helping a child to sleep. Herbalism, Aromatherapy or massage may help but it is important to consult a qualified practitioner before using any complementary therapies with children and babies.  To find qualified therapists in your area consult the Federation of Holistic Practitioners website on www.fht.co.uk. Soft music may also be helpful.

Medication

In certain circumstances a GP may consider prescribing medication. This can be useful for very short periods. It is not a cure for sleeping problems but combined with management changes can be useful, however children quickly become accustomed to it. 

Conclusion

Research has shown that using a behavioural programme can help almost all children, regardless of the cause of the sleep problems. However, it is important to remember that it may take longer to see an improvement if a child has a neurological impairment.

Sleep problems are exhausting for parents and children but, given time and patience, there are many methods that may be able to help. Talking to other parents about methods they have used may also be useful. Scope may be able to give you details of local groups and parent befriending schemes which may operate in your area. Contact Scope Response in the first instance.

Suggested reading

Sleep Better! A guide to improving sleep for children with special needs
Durand, V. M. Paul H Brookes Publishing Co, 1998 ISBN: 1557663157

Helping your child with autism to sleep better (factsheet)
Produced by the Information Centre, National Autistic Society, 1999

www.nas.org.uk/nas/jsp/polopoly.jsp?d=1071&a=3376

Further information

It may be helpful to discuss the situation with the GP or Health Visitor. Many health authorities run sleep clinics, and referrals can be made via the GP.

Parentline Plus provides emotional support and information to anyone involved in caring for children. This includes a free helpline service, parenting classes and a range of leaflets and publications.
Tel: 0808 800 2222. The helpline is open 24 hours a day.
A free textphone service is also available.
Monday to Friday 9am - 5pm. Tel: 0800 783 6783
www.parentlineplus.org.uk

Sleep Scotland provides support to the families of children with special needs and severe sleep problems. Although their clinics are based primarily in Scotland they do have trained Sleep Counsellors in some parts of England.

Support line available Monday to Friday, 9.30am to 5pm

Tel: 0131 651 1392

www.sleepscotland.org

This document is for information purposes only.

For more information about cerebral palsy and Scope services

Contact Scope Response for information, advice and support. Copies of all Scope's information sheets can be downloaded from the website or obtained from Scope Response.

Scope Response hours are:
Monday - Friday 9 am to 5 pm. Closed weekends and Bank Holidays.

Scope Response
PO Box 833
Milton Keynes
MK12 5NY

Tel:  0808 800 3333
Fax:  01908 321051

Email: response@scope.org.uk  

Scope acknowledges the help and support of everyone who has been involved in the production of this information.

This information can be made available in other formats if required eg. large print or tape. We have information about Scope and cerebral palsy available in different languages on CD-ROM. We also offer a telephone interpreting service to people whose preferred language is not English.

Please contact Scope Response for more details of these services.

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