Sleep

Sleep Difficulties as Challenging Behaviour

Sleep Disturbance affects the families of both disabled and non-disabled children.
Many children have sleep patterns which are seen as a ‘problem’ by their parents: research has shown that up to 20% of all two year old children and 14% of all 3 year old children wake regularly throughout the night. Most children who do not have a good sleep pattern will generally sort things out by themselves, eventually. Adolescents tend to want their own space and don’t want a parent with them when they go off to sleep! This isn’t always the case with many children with Intellectual Disabilities, and I’ve supported many parents of pre-teens and older teenagers to resolve their child’s sleep problems.
Sleep disturbance is far more persistent and widespread amongst children with Severe
Intellectual Disabilities. Chronic sleep disturbance has been shown to still affect up to 50% of children aged 16 who have a severe ID. Many research studies have also shown a link between a poor sleep pattern and an increase in daytime challenging behaviour. They also show, not surprisingly, that the carers of children with disturbed sleep patterns report higher levels of stress than the parents of children with an ID who do not have disturbed sleep.
Certain conditions/Syndromes are also linked with a poor sleep pattern.
These are: Autism, Tuberous Sclerosis,Phenylketonuria, Epilepsy and Prada Willie Syndrome.

What is a Sleep Disorder?

Sleep difficulties are usually categorised into three main areas. These are:

Difficulties with settling to sleep at night
Waking during the night
Early morning waking (usually categorised as waking more than an hour before the household usually rises)

When looking at a child’s sleep pattern it is useful to compare it to what would be the usual sleep pattern of any child of the same age.

What treatment methods are frequently used?

No big surprise here really. Families generally seek advise from medical professionals. If the child is young they may get referred to Plunket Nurses or Public Health Nurses for advice. But research shows that by far the most common form of treatment is pharmacological. This is despite a great deal of evidence that improvement made is only slight and not well maintained. Behavioural Interventions have a far better track record, with research showing that they are more likely to be long term.

So What Works?

There is a wealth of literature around that looks at effective interventions for sleep disturbances. These generally use behavioural terminology that isn’t familiar to parents, for example: Sleep Scheduling, Extinction, Bedtime fading and Chronotherapy, Shaping and Fading, establishing a consistant routine with a graduated extinction procedure.
Whenever I work with families I always start with finding out exactly what is happening at bed time and during the day with regard to sleep. I would be particularly interested in whether a child sleeps in the day, even if it is just during car journeys. I’ll want to know what the household bedtime routine is, what they eat and drink close to bed time, if they share a room, is the child’s routine different from other siblings, are there any medical concerns, how do they fall asleep, how long do they sleep for etc. If parents can’t give me all of this information then I’ll ask them to fill in a sleep diary for a week or so to see if there is a pattern emerging. I also find it useful to be able to see the bedroom/bedrooms or place that the child usually falls asleep.
I always begin by explaining that some children simply do not find getting into a good sleep pattern easy, and may always need less sleep than other family members. I also try to set realistic goals at the start. If a child sleeps for 2 hours in the day and 5 hours at night then it isn’t realistic that they will sleep for more than 8 hours a night, we can only work within the amount of time a child usually sleeps for. I explain that a childs need for sleep will vary throughout their childhood,for example generally a 2 year old will need more sleep than a 4 year old and adolescents generally need a lot of sleep.
If a child has all three types of sleep difficulties, or settling difficulties and one other, it is always important to deal with the settling first. Often when settling difficulties are resolved then children’s total sleep pattern will resolve without further intervention. It is important that a child learns to go to sleep alone, without being rocked/held/stroked/read to etc, so that if they wake during the night they would not be startled into being fully awake with the shock that the parent who was holding them or rocking them has gone away. If a child has been held/rocked or read to until they are asleep then this will need to be gradually faded and the parent move slowly away from the child as they fall asleep, until the child is actually going to sleep alone.
If a child is going to sleep in a parents bed or coming into them during the night, I would generally recommend that they do some planning and preparation (perhaps with social stories, preparing the child’s room by re-decorating or getting a new bedtime toy etc) and then pretty much go ‘cold turkey’ and stop this from day one of the programme. This can be really hard for parents, as they generally get a few very bad nights sleep, where they will have to keep returning their child to his or her own bed with a minimum of fuss and attention, but usually effective quickly. I ask parents to prepare themselves for a couple of weeks of disturbed sleep, but have actually found that most programmes like this work between 2-6 days. When they are sure the child is into a better routine, Make sure they are warned about the possibility of an"extinction burst” and are prepared for what to do if that happens.
Night time waking and early morning waking can usually be dealt with along similar lines, with an individualised programme for each child to take into account their own situation.
Some sleep difficulties have their own form of treatment, for example ‘night terrors’ or sleep walking and it is worth reviewing the literature for these as and when they occur. In my experience these unusual situations are few and far between, most of the difficulties with children’s sleep patterns can be resolved by getting rid of stimulants from the enviroment, a good routine,consistency between caregivers and some individualised advice.
Something called ‘sleep scheduling’ has been proved to be the most effective form of non medical treatment for insomnia (insomnia being wishing to sleep but finding yourself unable to).

Summary

This has been a bit of a whistle stop tour of ‘all I know about sleep problems’ in a very brief form. I hope it is of use.

Gill Thornton

Getting your child to sleep alone

Establish a before bed routine.
Physical activity after evening meal followed by a calming activity eg. drawing, reading.
Try to have a talk about the day and spend time with your child.
A bath or shower can be calming.

Before getting into bed make sure your child has everything they need so there is no reason to get out of bed eg. drink, food and been to the toilet, hugs and attention.

Settling down to sleep

Child must go to sleep by herself. Do not sit on the bed. Sit on a chair in the room. If your child is used to lying down with you change this to the sofa and have your cuddling time before getting into bed. Your child must learn to stay in bed without you next to them.
Gradually move your chair further away from the bed until you are outside the room.
Explain and rehearse the plan with your child so she knows clearly what will happen. Rehearse what will happen if your child comes out of the room. Do not give your child attention simply take them back with a firm command to “stay in bed and go to sleep”

Night time waking

If your child wakes in the night it is important that the room is the same as when the child went to sleep. If the child goes to sleep with the light on and the door open leave it like that all night.
Reassure your child promptly and take them back to their own bed. Do not let your child get into your bed for a brief cuddle. If they need you to settle them sit on the chair beside their bed.
Rehearse this procedure with your child so they know what to expect. Make sure you have hugs and cuddles during the day so your child gets the physical closeness during the day and not in the night.
It may seem hard but it is important to be consistent and stick strictly to your plan so your child gets to know there are no exceptions and stops trying to get to sleep beside you.
The first two weeks will be the most difficult and the behaviours should reduce significantly after that. It is important that parents agree on the steps and carry them out consistently.

Social Stories to use for sleeping

Karen’s Bed Story

Karen is a big person now.
Big people sleep in their own bed.
Big people do not go into Mummy’s bed at night.
If Karen wakes up in the night she can

go to the toilet and go straight back to bed
snuggle the toys
read a book quietly
shut her eyes tight and go back to sleep

   If Karen remembers to do this, everyone will get lots of sleep and wake up happy.
   Well Done Karen!

   Reason for sleep

   Everyone in my family is very busy.
   I am very busy at school - doing my school work, playing and running around.
   Dad is very busy at work. Mum is very busy looking after the house.
   Busy people need their sleep. A good night’s sleep prepares you for the next day.
   If you have an interrupted sleep you can be very grumpy and tired.
   The best way to have a good night’s sleep is to stay in your own bed. I must
   remember to stay in my own bed all night.
   If I wake up I can:

Close my eyes and go back to sleep
Read my book for a while
Play with my toys quietly

   It is not ok for me to get into Mum and Dad’s bed. They are busy people too and
   need their sleep.
   Mum and Dad will be so proud of me if I remember to stay in my own bed.