Sleep deprivation in disabled children can have a distressing effect on families. Often there are simple measures that can be put into place that may help to overcome the difficulty.

This page will give information about some of the difficulties experienced by disabled children and covers research examining children with learning and physical impairments. We also suggest some tips and solutions which in the experience of Scope have helped families.

Statistics suggest that sleep problems can be more common in disabled children with 41% of children aged four to 12 years in special schools having difficulties settling at night, compared to 27% of children in mainstream schools (1). Children with additional needs also seem to have greater difficulty staying asleep, 45% compared with 13% of children in mainstream school. Children with severe learning disability are more susceptible to sleep difficulties with over 80% of children up to the age of 11 years demonstrating sleep problems (2). Research also suggests that children who have autism are more likely to have sleep difficulties and this is reported to be between 34% and 80% of children with a diagnosis (3). It has been suggested that sleep problems average a duration of just over seven years and are unlikely to disappear without intervention (4).

Causes of sleep problems

There are a number of reasons why your child may not be sleeping. If you can identify what is causing your child’s problem you can then work on strategies to try to improve the situation. Reasons for your child not sleeping could include the following:

• Too hot or too cold
• Hungry or thirsty
• Wet or soiled
• Unwell
• Uncomfortable in their cot or bed
• Disturbed by noise
• Over-stimulated by their bedroom environment
• In pain
• Unable to self-settle
• Over-stimulated before bedtime
• Teething
• Under-active during the daytime or having too many naps

Tips for keeping a sleep diary

Keeping a sleep diary is a useful way of evaluating the problem.

• To establish whether there is a pattern to your child’s sleep disturbance you should keep the diary for at least two weeks
• Fill in the diary honestly
• If your child sleeps elsewhere, such as a respite centre or with grandparents, ask them to complete the diary too
• Check with carers to see if your child is napping during the day
• Share the diary with professionals to see if they can assist you in finding a possible cause for your child’s sleep difficulties
• Keep the diary by the bed with a pencil so that you can fill it in during the night, rather than trying to remember the times and lengths of waking.

The bedroom environment

In Scope’s experience we feel that the child’s bedroom should be a relaxing environment that promotes sleep. Follow this simple checklist to make sure your child’s bedroom is restful:

• Ensure that the bed is comfortable and safe.
• A child’s bedroom needs to be prepared so it is conducive to them sleeping. TV, video players, music or computers all need to be removed or turned off and covered. Toys and all distractions should be put away for the night.
• If possible, use a blackout blind or thick curtains at the windows and keep lights low, or use a special nursery night light if the child does not like complete darkness. Darkness helps your child’s body to create melatonin which will make them feel sleepy.
• Make sure that the room is at the correct temperature; you can buy nursery thermometers that indicate the right temperature, ideally between 16 - 20 degrees Celsius. High temperatures disturb sleep.
• Is the room quiet? Is there any environmental noise outside the room? If noise is a problem, you may want to consider using a fan in the room. The whirring of the fan will help to mask any background noise, or you can buy white noise CDs that claim to block out background noise.
• The room should be decorated in pastel or pale colours as bright colours are often stimulating to children. The bedding should also be pale and neutral.

Bedtime routine

Children respond positively to routines, and it is important that a good routine is established at bedtime. You may find the following tips useful:

• Lively play should become quiet play in the hour before bedtime.
• Keep a regular, age-appropriate bedtime for the child. Check the average sleep needs chart to work out the correct time the child should be going to bed.
• The same sequence of events should happen every night. Visual timetables can help a child understand the order of events and what is going to happen next.
• Use clues to signal bedtime, such as closing the curtains or playing a set piece of music each night. Bathtime should be relaxing, and once you have left the bathroom to go to the bedroom you should remain in the bedroom with your child.
• Read a bedtime story, but ensure that it is within a clearly defined time and that it does not go on indefinitely.
• Dim the lights.
• Say goodnight in the same way each night and for the same length of time (for around one to three minutes).
• Wake your child at the same time each morning to help them to get into a routine and strengthen the daily cycle.

Diet

Again, in Scope’s experience of working with families, we find the following helpful.

Try to ensure the child does not go to bed hungry. Once a child is eating solids regularly throughout the day they should not need to take a feed during the night, always seek medical advice if your child continues to feed in the night. Some drinks or snacks may have an impact on a child's bedtime routine, and drinks with colouring or sweeteners can affect settling. Instead give milk, water or very diluted fruit juice. Blackcurrant juice should be avoided as it can irritate the bladder and cause children to urinate more frequently.

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 medication and a good bedtime routine should still be used. Melatonin should be used with caution in children with epilepsy.

There has been some research into whether melatonin may be effective in sleep onset difficulties. However there is currently little evidence for the effectiveness of melatonin and a possibility that it may increase seizures especially if administered in an uncontrolled manner or if using imported melatonin. A study has been proposed looking at melatonin in visually impaired children but to date, no randomised controlled trials have been undertaken looking at sleep difficulties in disabled children (C Willey (2001) Does melatonin help children with learning disabilities sleep? (5)

Research has shown that informing parents of ways to encourage the development of good sleep patterns may help prevent some of the long-standing and severe sleep disorders and their associated negative effects for the child and their family. However, preliminary findings suggest that even when there is an underlying condition, many sleep problems have a behavioural component. The impact of sleep problems and treatments are still largely unexplored with professional awareness being poor (6).

Download our average sleep chart to see if your child is getting approximately the right amount of sleep each night.

Sleep problems are exhausting for parents and children but, given time and patience, there are many approaches that may help. Talking to other parents about methods they have used may also be useful. Scope’s Sleep Solutions service can offer support around sleep issues. Contact Scope Response in the first instance.

If you wish to view the research papers which support the notations in this information or have any queries about our research, please contact Scope Response.

Sleep: suggested reading

Sleep Better!: Guide to Improving Sleep for Children with Special Needs
Durand, VM. Paul H Brookes Publishing Co. (1998)
ISBN: 1557663157

Managing Sleep Problems in Children with Down’s Syndrome: Notes for parents and carers.
Stores, R. Down’s Syndrome Association (2001)

Sleep: 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.

Scope has a small number of Sleep Practitioners who work with families of disabled children. To find out more, please contact Scope Response.

Sleep Scotland

Sleep Scotland is a charity providing support to families of children and young people with additional support needs and severe sleep problems. Sleep Counselling Service is committed to improving the lives of families of disabled children who have difficulty sleeping. Their support line is open Monday to Friday, 9.30 to 5.00pm, call 0131 651 1392 .

Website: www.sleepscotland.org 

Or contact by post at: Sleep Scotland, 8 Hope Park Square, Edinburgh, EH8 9NW, Scotland.

Cerebra

Cerebra is a charity that supports families of brain injured children and young people. They run a sleep service by telephone, post, email or home visit. To find out more about their service log on to the Cerebra website or contact by post at Cerebra Sleep Service, Freepost SWC3360, Carmarthen, SA31 1ZY.

For more information on Scope

Contact Scope Response for information, advice and support on cerebral palsy and disability issues.

Editors: Jean Merrilees, Scope Response and Vicki Dawson, Sleep Practitioner.

Peer Reviewer: Dr Catherine Hill, BM MSc MRCP FRCPCH. Consultant Paediatrician, Spire Southampton Hospital

Version 2.2 May 2013

Sleep difficulties in connection with disabled children is a fairly new area of research and intervention and therefore there are not many research papers and controlled trials that have been undertaken. In researching this, we have used the information available to us as a national charity and have found the Rapid Review written by McDaid and Sloper is a comprehensive review of the subject.

This page was edited by Jean Merrilees who is an Advisor on Scope’s national helpline and has had nearly 20 years experience of providing information, advice and support to disabled people and families. Joint editor is Vicki Dawson who is a Sleep Practitioner and a trainer on disability. She also teaches children with special educational needs.

The peer reviewer is Dr Catherine Hill, Consultant Paediatrician, Spire Southampton Hospital. Her research interests are Cerebrovascular and Neurocognitive Function in Sleep Disorders. Dr Hill is also a member of The British Sleep Society.

References

1. Quine, L. (2001) Sleep problems in primary school children: comparison between mainstream and special school children. Child: Care, Health and Development, May 3: 201-21.

Cited in McDaid C and Sloper P, (2008) Evidence on Effectiveness of Behavioural Interventions to Help Parents Manage Sleep Problems in Young Disabled Children: A Rapid Review, Univ York; Social Policy Research Review; C4EO. p1

2. Bartlett, L.B., Rooney, V. and Spedding, S. (1985) Nocturnal difficulties in a population of mentally handicapped children. British Journal of Mental Subnormality; 31: 54-59

Cited in McDaid C and Sloper P, (2008) Evidence on Effectiveness of Behavioural Interventions to Help Parents Manage Sleep Problems in Young Disabled Children: Univ. York; Social Policy Research Review; C4EO; p1.

3. Richdale, AL, Prior, M.R. (1995) The sleep/wake rhythm in children with autism. European Child and Adolescent Psychiatry; 4: 175-286. Cited p1 Ibid.

4. Wiggs, L., Stores, G. (1996) Sleep problems in children with severe intellectual disabilities: what help is being provided? Journal of Applied Research in Intellectual Disabilities; 9: 159-164.

5. Willey C. (2001) Does melatonin help children with learning disabilities sleep? Arch Dis Child 2002; 87: 260; http://adc.bmj.com/content/87/3/260.1.extract

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Khan S, Heussler H, McGuire T, et al (2010) Melatonin for non-respiratory sleep disorders in visually impaired children. Protocol; The Cochrane Collaboration; Cochrane Library Issue 5. pub: Wiley.

 6. Richdale A, Wiggs L. (2005) Behaviourial approaches to the treatment of sleep problems in children with developmental disorders: what is the state of the art? The International Journal of Behavioral Consultation and Therapy; 1: 165-187