Sleep Solutions for Children with Down's Syndrome

A guest post by Jane Armstrong.


I attended one of Jane's Sleep Solutions workshops a couple of years ago, and it was really very useful. We certainly have better nights with Natty now and we understand her wakefullness more.
We also bought a weighted blanket, which made her feel secure when she was younger.




         
 
Sleep solutions is a product funded by the Cornwall and IOS Health Authority. It supported by the organisation face2face, which is part of the charity Scope.



My name is Jane Armstrong and I work as a sleep practitioner for Sleep Solutions covering  the whole of Cornwall. My work involves supporting families with a child with additional needs/disabled child who have sleep problems. I do this in a number of ways, including:
·      1 to 1 support by visiting parents in their own homes and writing them tailor made sleep programmes,
·      sleep workshops and courses
·      talks to specific groups of parents and professionals.
I am also the parent of a child with Down’s Syndrome. My daughter Nicole is 9 years old and a lot of fun. Fortunately for me she sleeps well, which enables me to do my work and try to help others without feeling too overwhelmed by tiredness! I think I am one of the lucky ones.  

       Up to 25% of all children have a sleep problem at some time (Mindell and Owens, 2003).

Learning to sleep is part of normal development. However, it is not something you do automatically. We all have to be taught to go to sleep. Parents of a child with additional needs can have a much harder job. Sometimes learning difficulties, physical problems,  health issues, personal circumstances or the environment can get in the way. 

Sleep and Down’s Syndrome
The Downs Syndrome Association have an excellent booklet on sleep that you can download from their website www.downs-syndrome.org.uk

·      Approx 55%-60% of children with Down’s Syndrome have a sleep problem.

Sleep disordered breathing/Obstructive Sleep Apnoea(OSA)
OSA occurs as a result of the upper airway at the back of the throat becoming blocked repeatedly during sleep. Breathing will stop for a time and the child is woken up struggling to inhale. It also causes low oxygen levels- often below 90%- and is common in children with Down’s Syndrome. One cause can be enlarged tonsils or adnenoids.  Removal of these can help (but not always) and each child needs to be investigated as a separate case. 

Behavioural issues
Behavioural sleep problems are the most common in children, including those children with Down’s Syndrome. The behaviours may have resulted from repeated waking due to sleep apnoea, or could be because the child does not understand what is expected of them at night time. There are many other reasons why your child may not be sleeping, but there is no reason why they cannot be helped to sleep better.

When giving parents general advice about sleep, I will ask them to look at my top tips list :


Top Tips for sleep
·      Make sure that the child’s room is quiet and dark.

·  Wake the child at a regular hour each morning, so that the circadian cycle is strengthened.

·      Keep a regular bedtime for the child.

·      Keep room temperature to a comfortable level.  High temperatures disturb sleep.

·      Environmental noise should be kept to a minimum (no loud TVs).

·   Make sure that the child does not go to bed hungry, but do not give a child large amounts of drink or any food during the night.

·   Help the child to learn to fall asleep alone in his/her bed, without your presence.

·       Avoid stimulating activity in the hour before bedtime.

·      Do not let the child have prolonged naps in the late afternoon.  If the child still needs to sleep, schedule the nap for early afternoon.

·    Try to ensure your child has a good daytime routine in terms of regular meals and exercise. What happens in the day is a ‘setting up’ of what happens at night.

·   Avoid drinks of cola, chocolate, tea and coffee i.e. caffeine and additives, before bedtime,or at all during the daytime, Have a warm milk drink before bedtime.


I will then ask them to look at their bedtime routine:




A Good Bedtime Routine
·     Lively play should become quiet play before bed time
·     The same sequence of events should happen every night
·     Use clues to signal bed time, e.g. clock, closing curtains etc and exaggerate                               them.
·          Bath time should be relaxing
·   Read a bed-time story within a clearly defined time-usually 3–15 mins depending on age
            ·           Dim the lights
·       Story tapes, lullabies etc can be used; must be the same length every night.
·   Try to avoid televisions or playstations etc in the bedroom and do not allow computer games a good hour before bedtime (2 hours even better).
·      Hugs and kisses (1-3 mins). The same thing should be said every night as the cue to sleep.


Programmes
 If you have tried all of the above and your child is still not sleeping, there are various behavioural techniques that can be used. A couple of these are mentioned in the sleep leaflet produced by the Down’s Syndrome Association:
·      Checking Method
·      Gradual Withdrawal.
You could try whichever programme suits you the most, bearing in mind they can sometimes be difficult to implement without support from family members or others. Do not put too much pressure on yourself to make it work immediately.
There are more behavioural programmes than the above I use with parents, but I like to tailor them to the individual child and parent.  I prefer be able to give families personal support through them.
It is always a good idea to include a reward system in your programme, but it must be something your child will understand and be as immediate as possible.

Parents coping
It is hard enough to cope with all the extra elements that parenting a disabled child brings, We all have to become experts in our child’s condition, attend appointments constantly, care for our child who needs more attention than other children,  as well as be there for the rest of our family. Therefore, when we add exhaustion due to lack of sleep to the list, the situation becomes even more overwhelming.
Therefore, much of my role is to support parents emotionally through the difficulties caused by sleep deprivation. A sleep programme must be complimented by an understanding of where the parent is -- if a parent has the energy and emotional strength to change routines and implement strategies.  If it is too difficult, I always feel it is best to do a little bit at a time based on what each individual carer can cope with.
      On the other hand, I have found that sometimes just one very small change can make a huge difference. J

Resources
These are items I use to help the process of sleeping in conjunction with a behavioural programme. Examples:
·      Sleepytot Rabbit
·      Glo clocks
·      Blackout Blinds
·      Storybooks about sleep
·      Books about sleep for parents to use.
·      Lights
·      Sand timers


Most of these are available from websites such as www.amazon.co.uk

Happy Sleeping! 


      





5 comments:

  1. Hello, we are a business that helps families with Special needs get through the night when they face issues such as stripping and dipping. We would love to get in contact with you to discuss your work.

    ReplyDelete
    Replies
    1. Thank you. I just popped over to your site and loved it. Have psted link to your teddy in a wheelchair to a friend immediately. Do email me at downssideup@gmail.com with any ideas. I will link you to my useful websites page.

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  2. For "special parents" that were chosen by God, please also check if your kids experience hypopnea. This can be too disturbing for your little one's slumber time.

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  3. Help, we have a routine and always have but our soon to be 4 yr old Emma will not stay asleep, she gets up about every 45 min after the initial 3 hrs...how do you feel about melatonin and what dose can we go up to? she is 45 lbs???

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    Replies
    1. I don't have any experience of melatonin I'm afraid, although some parents use it as a last resort. Have you investigated having her tonsils removed. This makes much larger airways and prevents that apnoea that can wake children so often.

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