"My bedroom window" by Susie Mallett, June 2010Sleep -"Chief nourisher in life’s feast"
Sleeping with a disabilty…
… or without
The discussion at the moment between myself and colleagues is sleep. It is about getting to sleep, getting too much sleep, or not enough sleep. It is about sleep routines and lack of them, about refreshing sleep and not-refreshing sleep, comfort or discomfort. About sleep in the night and naps in the day.
It started off with having nothing to do with how conductors sleep, or how parents and carers sleep, or how Joe Blogs sleeps. But the more I think about it, then the more I realise that this is all one package.
Sleep is important for all of us, it can also be a worry for all of us. We all have periods when sleep is easy, when it is difficult. Times when we do not sleep enough or when we think that we sleep too much. Times when we can exist on next to nothing and times when even ten hours of the stuff does not seem to be enough.
Many people, not only those with a disability, have disturbed sleep patterns. All these people, including the disabled people, have to find solutions to the problems, because we all need to sleep well, if just sometimes to remain healthy.
Problems that occur to prevent healthy sleep can be work-related or because of having too many thoughts to drop off, or they can be due to discomfort, with aches and pains keeping us awake, tossing and turning to get comfortable.
Conductive pedagogy is about learning to solve problems
If there is a disruption of sleep patterns or the inability actually to form a sleep pattern what do we need to consider?
I am going to answer this generally if I can, and not specifically about a specific disabled child or adult, because the more I have discussed this subject, mainly with clients and with my colleague Anne Wittig, I believe that problems involving sleep and their solutions are not specific to disability but to life in general.
We can ask where do the children or adults sleep? Does the sleeplessness disturb the sleep pattern of others?
Do they all get enough sleep?
And if there are problems, we can ask what can we do to solve them?
What do I do if my sleep pattern changes for the worse?
I ask myself first of all whether I need a new mattress, whether I have too many pillows? Am I too hot in bed or am I too cold? Last winter for example I put the heating on at night and not during the day so much. This resulted in wonderful nights of cosy, relaxed sleep and more alert hours in the day. At the moment I have an aching shoulder. Its cause is not the bed but it is disturbing the sleep, I can help the sleep to be more restful by getting the right pillow in the right place before I snuggle down.
Other people may find that a different bed, a different weight of bed-covering, or sheets made from a different material may change the pattern of sleep positively. They are all worth a try.
What do I do if I cannot solve the problem with these practical solutions. What do I do if I am comfortable but still not sleeping?
I can develop a relaxing routine for last thing in the evening. I can prepare myself for bed and for sleep, I can begin to get into a routine while still awake, doing this at a time that is early enough so that I am not over-tired. Not necessarily always the same time but regular timing is easier. To do this at irregular times I need to be particularly aware of what my body is telling me. Knowing my body better is also something else that will help me to develop the good sleeping routine that produces restful sleep.
I could observe what activities I can do before bed so that I am relaxed and can fall asleep quickly. I can observe how late I am able to eat and digest my food before sleeping. I can observe what kinds of food leave me in what frames of mind. I can ask whether warm milk before bed relaxes me and makes me sleepy or whether it causes me to get up in the night to visit the bathroom.
If I live with other people, can observe whether their sleep patterns and routines in the evening disturb my sleeping. I can ask whether my own sleep routines disturb others. If so what should I change?
What do I do if I wake?
Do I turn over and go to sleep, do I practise self-hypnosis, do I get up and make a cup of tea, read a little then return to the comfort of my bed, or is it better to try snoozing on the sofa?
Solving problems
Now I have asked myself all these questions. I can get to work on solving the problems. I have actually recently changed a forty-year old disturbed sleep pattern by doing all of this.
I think that the same questions apply to everyone, a adult or child, someone with a disability or without. I do not think that a parent needs to make sleep routines that are any different for a child with a physical disability from what they do for a child without one.
All parents with children have to develop pre-sleep routines, find the right sleeping positions, discover methods for falling asleep whether the child is disabled or not. Adults need to solve problems with sleeping whether they have a neurological disease resulting in a movement disorder or not.
Individual solutions and trial and error are the only way and there needs to be consistency and endurance.
I do know from my own experience, though, that it takes a long time to change.
My New Year resolution 2009/10 was “Five times out of seven in bed before eleven“. I have only managed more than four times out of seven once: that was the last time I was on holiday with my father. I worked in his garden and I was very tired, I left him watching football and collapsed each night in my bed from childhood! I always sleep in it when I am home in England and this was always the place I headed for when sleep was being awkward, but it had lost its soothing abilities about ten years ago. At Whitsun the qualities returned. It had nothing to do with the cosy bed of my childhood, it was to do with my recognising when I was tired and responding to this. Getting into the routine and sticking to it. At the end I really felt like I had had a holiday.
With a disability
I have been asking around and gathering information from conductors and parents, and both child and adult clients. I have been piecing together all my own experiences with clients over the years.
Learning to sleep with a disability can be as difficult as learning to live with a disability.
It is all part of the conductive upbringing and lifestyle, it is all part of any life style.
Some parents of disabled children need guidance and ask conductors for their help.
Any problems relating to sleep have to be discussed and solutions found within the conductive programme in the same way as problems that involve any other aspect clients’ lives.
Children and adults
Most of the sleep problems that we as conductors come across involve parents and their disabled children rather than adult clients. Some of these do however, follow though into the child’s adult life. Some new sleep problems can develop in the children’s adult lives too, often to do with discomfort and a decreasing ability to move under a duvet. It is vital to at solve any childhood sleep disturbances before new ones rear up their heads in adult life.
Of course problems do also arise with other adult clients, clients who have become disabled later in life. There are the clients with Parkinson’s disease who need help to discover techniques to bring their bodies to rest, there are the stroke clients who wish to sleep on their sides but often cannot decide which side to choose, because they are disturbed by the presence of one or two limbs that the have difficulties moving. It has been known for them to try to throw an arm or a leg out of the bed in half-sleep as they do not recognise it as being part of their own body and it is in the way. Such clients can end up on the floor, resulting in a very disturbed night.
There are the paraplegic and severe MS clients who have to work out methods to turn themselves regularly in bed, taking care not to injure paralysed limbs that have little or no feeling while doing so.
Added to all this, many of these clients have spastic muscle tone to deal with, sometimes shooting spasms that wake them, sometimes muscles that make limbs so stiff that they cannot find a comfortable position in which to fall asleep in the first place.
For many of the problems mentioned here practical solutions can be found. A different mattress, a water bed, maybe with heating so that, if the bed-covers fall off the sleepers remain warm. Perhaps an electric training bike is needed beside the bed, to be used to relax the legs before sleeping again.
Harder problems
There are other problems for which solutions are harder to find. These are the problems that clients and families are more reluctant to discuss in depth, because it will usually mean a big change in the behaviour of all family members if solutions are to be found. Parents may have to realise that they need to be more strict with their child and with themselves, and this is often very difficult.
Let us remain by our child clients at the moment. Their sleep problems can, and often do, accompany them into adulthood.
Let us go right back to the beginning, to babies. Often the children who become our clients are premature babies or children who have suffered serious illness when very young. Such babies may sleep beside or in the same bed as their parents for much longer than non-disabled children normally would.
For all children there are so many methods to be used. All parents have their own way of preparing for bed. Some have a routine from a very early age, from day one in fact, others do not. Some routines are very rigid, others not. Some babies sleep for hours others for only one or two at a time. Some parents do not mind having a toddler still running around at nine o’clock, others do. Methods have to be found for bedtime that suit children, parents and the rest of the family.
When a family has an ill child or a child with disabilities it is very difficult to get into a new bedtime routine once the child gets older and does not need constant care at night. It is these problems that we as conductors most commonly come across. Families who know something needs to change but they need our help to find a good conductive method to make the changes come about.
I have experienced children whose parents had never asked for or found the help that they needed to establish a sleep routine. Their children as teenagers still find it hard to sleep at all if they know that their mothers are not in the house. I have known others who in their teens and even well into their twenties still sleep in the bed of a parent or even of a grandparent. All of these situations do not bode well for their future lives, or their families’.
None of the families that I have spoken to about such situations are happy with the arrangements that they have - but they have no idea how to bring about changes. Slowly, slowly the changes take place with our conductive help.
Individual variations
Such are the problems that conductors and conductive upbringing can help to avoid or also solve if they have already developed.
Each situation is different and has occurred for different reasons. A child perhaps needs rocking to sleep when it is three because it has always been rocked to sleep. We really must find a solution as fast as possible so that a parent does not have to sit there each evening still rocking when that child is thirteen, or twenty-three.
A forty-year-old client said that she always had her own room and slept alone as long as she could remember. She wanted her own space. The only time that her mother sat beside in bed and held her hand was when as a teenager she had an operation and was feeling poorly in hospital. Another mother told me that it was her other child, the one with no disability who was the fitful sleeper and twenty-seven years later she, the mother, still has difficulties getting a regular, long night’s sleep.
Only yesterday I had the same discussion yet again that I had two years ago, with the Mum of a teenager who, despite lots of hard work is getting shorter and shorter because of contractures in the knees. Two years ago it was discussed with therapists and doctors whether we would try night-splints, try knee stretching splints for standing during the day, passive stretching or an operation. I suggested lots of CE and night splints. Nothing has been done. The doctor believes that nights are for sleeping and not for wearing splints, and the child does not want any at all, day or night. The operation was postponed but is now on the cards again. It is now inevitable that splints of some kind must be worn, probably only after the operation, so nights will after all be for sleeping, with splints.
Children get used to sleeping with splints. If they know that there is no choice they do it and sleep well. It is when there are choices for children at bed time that the problems begin.
It is of cause necessary to establish whether someone is comfortable in the night. There are various pillows and wedges and foam cushions that can be used to achieve the best posture for sleeping, both for children and adults. There are many other things to be considered just as there were for myself (as I listed at the beginning of this posting). For our clients these could also include:
Side lying pillow
Electric cycle to use to reduce spasticity in the night,
Night splints
A regular rhythm of waking and turning someone
Music
Autogenus training (self hypnosis)
Specific routines, beginning them at the same time each day
Eating and drinking before bed.
Water bed with heating, or heated under-blanket
Reading stories, singing, TV or no TV
A general principle
I did say that I was going to try to write in general about sleep. The general conclusion that my colleague Anne and I came to was that on the whole sleep routines need to be established in much the same way for disabled clients as for non-disabled children and adults. This includes establishing routines for things that non-disabled people do not need, for example help with turning over or when going to the bathroom, or when taking medicines or drinking.
A routine in such situations is just as important for the carer as it is for the client.
We all need to get a good night’s sleep.
Macbeth, Act II, Scene 2, 35-41 :
Me thought I heard a voice cry “sleep no more!
Macbeth does murder sleep,” the innocent sleep,
Sleep that knits up the ravell’d sleeves of care,
The death of each day’s life, sore labour’s bath,
Balm of hurt minds, great nature’s second course,
Chief nourisher in life’s feast,-
Notes
Thank you to Anne Wittig for the exchange of ideas over the past few weeks. It has been very enjoyable and very helpful to us both.
Macbeth by William Shakespeare, Act II, Scene 2, 35-41
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