Talking Sense: Tackling sleep difficulties in children
Parents with young children expect some disturbed nights as their children settle into a pattern of normal sleep. But many children that Sense works with have severe sleep difficulties and their families often struggle to cope. Sleep deprivation can take a serious toll on children’s development and shatter the wellbeing of their families. Hilary Todd explores an issue that, at last, is coming into the light of day.
It’s 2 a.m and Lydia Howarth has been roused from sleep by the sound of an alarm. Her five-year-old son, Adam, is tube-fed overnight and he has rolled on top of the feed line, blocking it and triggering the alarm. Every night something happens that robs the Howarths of their sleep. “Things are worse when Adam has a cold – he gets lots of respiratory problems, like many children with CHARGE,” says Lydia. “Then I’m up and down all night, helping him to breathe. His cough can wake the whole household. For the first four and a half years of Adam’s life I learned to survive on about four hours sleep a night.”
Sheridan Butterfield has also had to cope on minimal sleep. Her son, Dale, now 14, has a rare chromosome disorder that makes him hyperactive by day and, until recently, awake for long stretches of the night. “Dale never slept properly from birth. We were still feeding him at night when he was five because he would accept such tiny amounts. He would wake in the night and cry because he was hungry, then often he’d wake very early and stay awake. Even when we stopped night feeding, the problems went on, he didn’t seem to need much sleep. At night we were always waiting for the next disturbance.”
“I couldn’t do anything with Emma at night *,” says Sally Cairns*. Emma, now 14, has a rare metabolic disorder that affects her joints and bones among other things. “She was in constant pain so she couldn’t settle. She’d cry in distress. The only thing that settled her was me getting into bed with her or putting her in the car and driving around. Sometimes she’d be sick or mess the bed and I’d be changing sheets in the middle of the night. This went on for years,” says Sally.
Like Adam, Jessica Howard has CHARGE. “From an early age Jessica would wake in the middle of the night about two nights a week and want to ‘party’ for two hours,” says her father, Simon. “She would giggle, get out of bed and bang her things about. The only way to settle her was for me or my partner to get into bed with her and calm her down. Things were worse when she got colds and infections, which was quite common. Eventually this got worse – she’d wake up and want to party five nights out of seven.”
A common problem
These four families are by no means unusual. Jenny Fletcher, Head of the Family Education Advisory Service, Sense West, thinks that the majority of families they work with have sleep problems to deal with at some stage. “The children have such a range of difficulties that affect their sleep, breathing problems, digestive problems like reflux – these all mean the children can’t settle comfortably. Children with Usher Type 1 might wake in the night needing the toilet but can’t get there because of night blindness and become very disoriented. Epilepsy is often worse at night, indeed some forms only occur at night. Some of the children we support are simply very poorly and need attention round the clock. Part of the problem for many of our families is that children often can’t communicate how they’re feeling at bedtime or in the night. Parents have to deduce it.”
|"Deaf children are probably anxious about sleep, because they feel isolated."|
Gail Deuce works with Sense’s Family and Advisory Service and has observed similar difficulties. “Deafness is an under-estimated factor. Deaf children are probably anxious about sleep, because they feel isolated. Ear infections are common too and are very painful. I think some children have undiagnosed tinnitus and of course that’s worse at night.”
Children with CHARGE have particular difficulties, some of them related to their lack of body awareness and self-regulation (proprioceptive abilities). “Some children have no understanding of relaxation,” according to Gail Deuce. “With one child it had to be explained that you have to close your eyes in order to sleep.”
Both Jenny Fletcher and Gail Deuce have seen families really struggle to get their children to sleep and stay asleep through the night. “Some families keep their children downstairs until they fall asleep on the sofa or even the floor, so they might not get to bed until the small hours,” Gail says. “Other parents spend hours comforting their child or may find they have to sleep with them to get them off to sleep.“
Families with a disabled child are often very stressed and anxious, which obviously affects the way they deal with the situation. As Jenny Fletcher points out: “If your child has come through repeated surgery as a baby, or maybe has had to be resuscitated a few times, it’s almost impossible to relax at night time because you’re constantly on edge. Mothers in particular are on alert for every sound.”
Sadly, sleep difficulties haven’t always resolved by adulthood. Phil Howell, Deafblind and Challenging Behaviour Consultant with Sense North, works with residents in group homes, typically young adults. “We know a proportion of residents have sleep problems. For instance some wake in the night or won’t sleep in a bed because at home they always slept on the sofa in the living room.”
A survey published as 'Sleep – what’s that?' (1), suggests that as many as 82% of disabled children have sleep difficulties. A recent study of children with CHARGE (2) indicates that about half of them have problems sleeping. In general though, very little is known about the sleep problems of children with multi-sensory impairment according to Dr Luci Wiggs, Senior Lecturer in Psychology at Oxford Brookes University, and an expert on sleep disorders in disabled children. “We know that many children with visual impairment have specific problems because their body clocks can be out of phase with the 24-hour day. A few exploratory studies of deaf children suggest that their sleep difficulties have been under-estimated. For example, some children feel insecure when their hearing aids are taken out and they can’t communicate their own needs and fears.”
Luci has done many studies of children with various kinds of learning disability, including children with Autistic Spectrum Disorders (ASD), with the aim of identifying suitable treatment options. “We have discovered that at least half of children with learning disabilities have problems sleeping. It’s easy to assume that the problem is the result of altered brain structures that affect initiation, timing or duration of sleep but it’s usually more complicated than that.”
Falling apart – the effects on children
Lack of sleep has profound effects on children. “Jessica sometimes fell apart after school, start crying for instance, because she was so tired,” Simon Howard says. “She couldn’t do her homework and her behaviour deteriorated, for example she began to touch strangers inappropriately.”
Emma’s school life suffered too, as Sally Cairns explains. “Emma would fall asleep at school so they’d ring me to bring her home.” Other children, like Dale, with a tendency to be hyperactive, seem to be worse as a result of lack of sleep. Sheridan Butterfield has noticed big improvements now that Dale is sleeping better: “Better sleep has had a knock-on effect on everything else. He’s more focused, less agitated, less frustrated and is eating better too.”
Gail Deuce sees the effect sleep deprivation has on children. “Lack of sleep obviously makes children tired and reduces their concentration, but it also makes it more likely that challenging behaviours will start up, then exhausted parents find it all the harder to deal with.” Phil Howell agrees. “Lack of sleep is an under-estimated factor in challenging behaviour. If our residents don’t sleep properly they’re also less motivated to do activities; they don’t see or hear as well; are more confused about things they normally deal with well, and get disoriented in familiar environments. Lack of sleep is a huge barrier to learning.”
Existing, not living
Of course it’s not just children who suffer when sleep evades them. Some parents go through a waking nightmare and siblings are often affected too. Sally’s story is typical. “I wasn’t functioning properly because of lack of sleep. I don’t know how I coped. I used to take Emma and her brother to a club twice a month and while they were doing activities, I’d sleep in the car. Emma’s sleep difficulties also affected her brother - she nearly drove him daft. I got someone in at the weekends just to give my son a break. I couldn’t have held down a job, I was just drained.”
Simon Howard and his partner, Flo, coped by working part-time and taking turns to look after Jessica at night. “But you’re tired all the time,” says Simon. “You just feel you’re existing, not living.”
The effects were more acute for Sheridan. “We’ve struggled as a family. Lack of sleep put us under severe stress as a couple and almost broke us up. I was so tired there are things I don’t remember about my two other children’s childhood. I know they had to grow up very quickly.” Lack of sleep eventually put Sheridan in hospital with viral meningitis. “I was also very accident prone and I think that was lack of sleep as well,” Sheridan says.
Lydia’s health also suffered. “After Adam was born I had one bout of tonsillitis after another,” says Lydia, who eventually elected to have her tonsils removed.
Various studies have shown that sleep difficulties in children can have very serious repercussions. In a Dutch study, six percent of parents admitted hitting or shaking the baby that kept them awake at night. Sleep deprivation is a major factor in family breakdown and even neighbours can turn hostile if they are regularly kept awake.
Getting through it
Many families really struggle to deal with sleep problems and support is patchy. Professionals involved with children and families often lack knowledge of how disability affects children’s sleep. “Because sleep falls across so many disciplines, it often gets very little attention or families may get passed from pillar to post,” says Luci Wiggs.
Other than Sense, Sally had no support from anyone. “Social services never offered us respite care. I didn’t want sleeping pills because you hear of people just being drugged on them. Really you don’t know what to ask for. It was just by chance I met a helpful doctor who said we should control Emma’s diet. We fed her on natural foods only and that helped to calm her. The doctor also prescribed melatonin, that really was a turning point because Emma slept well for the first time. She was only on melatonin for a few months because we then found something to deal with her pain and she now sleeps through the night."
For Sheridan Butterfield the big breakthrough was getting Dale’s feeding right. “Sense helped us to sort out the feeding and once Dale wasn’t hungry at night, he slept better. Melatonin also saved us,” Sheridan says. “When Dale was six we finally asked for help from the paediatrician who prescribed melatonin, which Dale is still on. Once we got the dose right he started sleeping through for about four or five hours – it was bliss.
“Dale is now in a residential school so we get four nights a week on our own. His sleeping problems were a big factor in us choosing this solution.” For many families, sleep problems are often the factor that tips the decision in favour of residential school.
Simon Howard eventually got help from the children’s mental health service. “We were prescribed melatonin and found that Jessica responds to a micro-dose, given half an hour before bedtime. She’s still on it but melatonin doesn’t keep her asleep all night. We figured that Jessica would sleep better if we dealt with her stress and anxiety - this is a factor for many children with CHARGE. We’re now trying Citalopram, an anti-depressant. This drug isn’t usually prescribed to children but it has helped Jessica to stay asleep all night.”
Respite care can make a huge difference to sleep-deprived families but few people get a service. Sheridan Butterfield was one of the lucky ones. “We used to take Dale to a respite centre one day a week and they took him to school the following morning, so we got several hours to catch up on our sleep,” she says. Many families mentioned the value of Sense holidays: “It was brilliant – we got some sleep at last!” Sally Cairns says.
Other families soldier on with simple stoicism. Lydia Howarth feels she’s coping despite her setbacks: “We want to focus on Adam’s care to keep him out of hospital – he’s been very poorly at times. For our family it’s important to have Adam at home and our sleep problems seem a small price to pay to see him grow bigger and stronger. You can get through this.”
For children who need treatment to get them off to sleep and stay asleep, the options include hypnotics (sleeping pills), melatonin and ‘behavioural approaches’. Luci Wiggs cautions against hypnotics: “These used to be routinely prescribed for children, it’s likely that GPs found this an easy route - but it’s known that in the long term they aren’t as effective as behavioural approaches. Hypnotics can be helpful in a crisis but they can also cause arousal in some disabled children.” Treatment with melatonin is becoming much more common – see the panel for more information.
‘Behavioural approaches’ are now the first line of approach for most doctors and involve various strategies designed to help children to learn sleep patterns which are best for them and their family. As young children, we all have to learn that night time is for sleeping, that we sleep on our own, in a special room, and that other people need sleep too.
As Luci Wiggs points out, “It can be hard for disabled children to learn all this, especially if their communication is impaired. Then parents can’t easily explain what they want their child to do. Some disabled children don’t have a clear distinction between night and day, for example they may sit indoors for long periods so don’t pick up cues that it’s time for bed. The sleep environment is also important. Families may make the bedroom quite stimulating for their child when in fact the opposite might be the best thing to do. More research needs to be done on behavioural treatments but there’s now enough evidence to suggest that they make a positive difference in most cases.”
There are some studies which suggest that disabled children who attend residential schools sleep better at school and in part this may be because schools have structured routines surrounding bedtime and sleep. “What works at school can also work at home in most cases, if families have sufficient resources and support,” Luci Wiggs says. Phil Howell successfully uses behavioural approaches for adults in Sense group homes.
Luci Wiggs has found that when a behavioural intervention is tried, mothers’ sleep improves before the children’s sleep: “It may give them confidence to leave their child at night so they don’t wake at every disturbance. One mother focused on making the bedroom safe for her little boy and once she knew he couldn’t hurt himself, she was content to leave him to work out his own ways of getting to sleep. It worked.”
Sheridan Butterfield eventually realised that sleep has to be taught. “I don’t think Dale understood how to sleep. He goes to bed OK but if he wakes, he gets out of bed. We’ve had to teach him what sleep is about and I think he’s learning now.”
However, behavioural interventions may need to be tailored to a child’s specific needs as well as the family’s situation. Some families are so stressed they don’t have the energy to deal with structured bedtime routines. As Sense staff stress, it’s important to take a holistic approach to children’s sleep, and consider everything that may affect it.
Don’t suffer, ask for help!
One message came through loud and clear from everyone who contributed to this article – don’t be afraid to ask for help and persevere until you get something that helps. It’s best to seek help early before poor sleep patterns get ingrained and everyone in the family is at the point of exhaustion. There are over 80 identified sleep disorders, not to mention medical conditions that affect sleep, so the first priority is to get a professional assessment. This should indicate which treatments are worth trying. If suggested treatments don’t work, ask for a referral to a sleep clinic that specialises in disabled children. There are few of these but GPs and paediatricians can refer families to them.
“My advice to other families is get a night off now and again,” says Sally Cairns. “Parents are afraid of admitting they can’t cope, but they shouldn’t be. You have to be pushy to get respite care but it’s worth it.” Luci Wiggs agrees that families have to create a demand for good respite care.
Simon Howard adds: “Keep an open mind. We didn’t want to use medication at first but we were prepared to experiment. Talk to other families about what works for them, and talk to Sense or other organisations that can support you.”
In his book Sleep better, Mark Durand, a Psychologist and Father of a disabled child, notes that families move heaven and earth to get their child to school because they recognise its importance for their child and themselves. As he says, we need to think about sleep in the same way, quite simply a good night’s sleep for all the family should be non-negotiable.
Why we should take sleep deprivation seriously
Sleep is much more than deep relaxation. Our bodies are on ‘special duties’ during sleep, carrying out vital processes that affect learning, memory, metabolism, repair of cells, growth (in children) and mental health.
In children, sleep deprivation leads not only to fatigue, but also to hyperactivity, irritability and increased risk of infections. Growth hormones are especially active during sleep when it is thought that the brain mostly develops too. Obstructive sleep apnoea, a condition in which breathing stops temporarily during sleep, retards children’s growth. Sufficient sleep is crucial to the hard-wiring of new information and learning, so lack of sleep has a huge impact on school performance.
Sleep deprivation affects adults’ performance, health and mood too. Parents should be aware that long-term sleep deprivation can lead to clinical depression and is a big risk factor when driving, up to one fifth of car accidents are thought to be sleep-related.
Melatonin, what you need to know
Melatonin is a natural hormone, produced in the brain, that signals it’s time to sleep. It’s controlled by the action of light falling on the eye. Melatonin levels increase with the onset of darkness and decrease in the light. Without the action of light, our bodies drift into a 25-hour cycle of sleeping and waking, which is why some visually impaired children have ‘free-running’ cycles out of phase with the normal 24-hour day.
Melatonin can be synthesised and is now licensed as a medication for adults. It can be prescribed for children on a named-patient basis and seems to be well tolerated. However there are no studies into long-term use with children, or into appropriate dosage levels. Not all medical professionals are willing to prescribe melatonin for children. There are concerns that it might affect fertility (in boys as well as girls) and increase the risk of certain epilepsies and asthma. On the other hand, some children with epilepsy have fewer seizures when on melatonin. But the good news is that, if melatonin is going to work at all, it generally works very quickly (within days) so parents will soon know whether it can help their child.
Melatonin is known to be an effective treatment for blind adults with free-running sleep-wake rhythms and it is often prescribed for children with impaired vision.
In the USA melatonin is an over-the-counter medication so it can be bought over the Internet. However, there are no controls over these products and some contain no melatonin at all.
The Department of Health is now funding a major study (MEND) of the use of melatonin with learning disabled children (a wide range of children, including some with (Autistic spectrum disorders) ASD). First results are expected in mid-2010.
Melatonin is not a miracle cure – the conditions have to right for it to give benefit – but many families regard it as their lifeline.
Teach your child to sleep
Many aspects of sleep have to be learned. If you can teach your child to sleep well, you’re giving them a skill for life that will benefit their development, health and wellbeing. Disabled children need consistent support from both parents to help them sleep normally and you need to persevere. Some families will find it easiest to teach their child with professional help to develop an intervention plan tailored to their child’s particular needs. Other families may find these general guidelines are sufficient. This approach may not solve sleep difficulties for every child but you have nothing to lose by trying.
Help children to understand the difference between night and day by getting them outdoors as often as possible during the daytime. Natural daylight helps to set our body clocks. Explain that night time is for sleeping.
Always put your child to bed and wake them at the same times each day, including weekends, however hard this is. This helps to establish a pattern for the brain, which is programmed for sleep.
If your child needs a daytime nap, don’t let it happen too near bedtime.
In the hour before bedtime, help your child to wind down. Avoid exercise, big meals, caffeine (as in Coca Cola and similar drinks), sugary foods and over-stimulating activities. These include television and computer games.
A consistent bedtime routine helps to establish that it’s time for bed. For instance you could try a warm bath, a story, a cuddle – whatever works for your child. Many disabled children respond well to routines, it helps them to predict what will happen next and so reduces their anxiety.
Keep your child’s bedroom dark, quiet, safe and comfortable but take all the toys away (or at least put them out of reach), except a favourite soft toy if they like one. Children need to understand the room is for sleep, not play.
Once your child is tucked in, say goodnight and leave the room. Children who learn to fall asleep on their own will be able to resettle themselves if they wake in the night so this is an important skill to teach your child. It may be hard (or sometimes not practical) to leave a crying child but there are strategies which are designed to minimise distress (yours and your child’s). See the resources at the end for details.
Once your child is in bed, don’t let them come downstairs, this helps to develop awareness of ‘bedtime'.
If you need to attend to your child in the night, keep your visits as brief and calm as possible. Don’t give eye contact or pick your child up.
Try not to get into the habit of putting the child in bed with you. It can be very difficult to break this habit.
Give your child rewards if they settle to sleep or sleep through the night. The most important reward is praise from you but other things such as stickers or small treats will help to reinforce the behaviour you want to encourage.
Try this, tips from families
These approaches have worked for some families so in case you want to experiment.
Diet affects sleep. You might find that your child is calmer and sleeps better if you give them a natural, wholefood diet. Get advice from a dietician.
Massage seems to help children with CHARGE and poor sensory integration. Physiotherapists can advise how to do it properly.
A radio tuned to something monotonous (Radio 4 is ideal!) can help if you think your child has tinnitus.
A ‘magic wand’ or sword can help some children who are anxious at night or who suffer from nightmares. Tell them it will banish all monsters and that no one can hurt them if the wand is at hand.
Aromatherapy oils like lavender and bergamot can help calm some children who suffer from anxiety. But discuss this with your GP – these oils can react with certain medications.
Acupuncture can induce relaxation and control pain. Talk to your GP first and always check that a practitioner is properly qualified.
Pain relief like Calpol can help. Consult your GP.
Weighted blankets can help some children with proprioceptive problems (lack of body awareness) by making children feel more secure and comfortable. Get advice from an occupational therapist.
A night light can help if your child is afraid of the dark. Light decreases the levels of melatonin however, so choose a very dim light.
Sign language, even a few key signs, can help children who can’t communicate when hearing aids are removed.
Herbal remedies like Kalms that you can buy over the counter, help some. Talk to your GP before trying these however.
Light therapy can help some children with impaired vision. You need a light box (available from electrical stores) that your child sits close to for about an hour each day, usually in the mornings. The light suppresses the action of melatonin and thus helps to establish an internal body clock.
Sleep systems are devices that hold children in a comfortable, safe position in bed and can help children with cerebral palsy or other conditions that affect movement. Ask your occupational therapist for advice or contact Scope.
Sleeping with the dog/cat can allay anxiety in some (older) children and teach them about the need for sleep.
Keep a sleep diary showing when your child goes to bed/naps, when they sleep/wake and what disturbs them. This can be vital evidence for your paediatrician or GP and they are more likely to take you seriously.
References and resources
* The names have been changed.
1. Sleep – what’s that? The incidence and impact of sleep problems in families of disabled children. Gillian Cowdell and Miranda Parrott. Handsel Trust, 2007
2. Sleep disturbance in CHARGE syndrome: types and relationships with behaviour and caregiver wellbeing. Timothy Hartshorne et al. Developmental Medicine and Child Neurology, 2008
3. Helping your child’s sleep: information for parent of disabled children.
Contact a Family. A helpful booklet about behavioural approaches, including what to do if your child cries or can’t sleep without you. Phone 0808 808 3555 or download from www.cafamily.org.uk/pdfs/paptSleeping.pdf
4. Sleep better! A guide to improving sleep for children with special needs.
V Mark Durand. Paul H Brookes Publishing, Baltimore, 1998.
A book for families and others on a wide range of topics, including practical advice on behavioural approaches.
5. Sleep disturbance in children and adolescents with disorders of development: its significance and management.
Edited by Gregory Stores and Luci Wiggs. Mac Keith Press, London, 2001. Primarily written for professionals; covers sleep difficulties in a range of children, eg with autism, Down syndrome, cerebral palsy, visual impairment, neurological disorders, ADHD and other conditions.
6.The Handsel Trust has a particular interest in sleep and disabled children and runs training days, mainly for practitioners. Web: www.handseltrust.org
7.Scope has information on sleep
Web: www.scope.org.uk/information/factsheets/sleep.html | Tel: 0808 800 33 33 | Email: firstname.lastname@example.org
8. Cerebra (a charity for brain injured children and adults) has a sleep service, including useful factsheets
This article appeared in Talking Sense, Spring 2009
First published: Wednesday 15 August 2012
Updated: Tuesday 15 October 2013