Sleep Strategies for Children with Down's Syndrome

Any sleep-deprived parent will tell you how debilitating that all-consuming exhaustion is. The brain fog, irritability, lack of concentration and a complete obsession with getting a few hours uninterrupted kip under your belt is a completely natural part of parenting. But you expect/hope/pray it will end after a few months.


Sleep hygiene is important for everyone

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


But for many parents of children with additional needs this pattern of broken sleep can last for years, or indefinitely. And of course the children themselves are suffering from disturbed sleep too, which has an impact on physical wellbeing and cognition.

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


Learning to sleep is part of normal development. However, it is not something any of us do automatically. We all have to be taught and parents of a child with additional needs can have a much harder time. 


Causes of disturbed sleep


  • Sometimes learning difficulties, physical disabilities or illness can disrupt the sleep process and habits form. Sleep disturbance then becomes a behavioural issue and children may not understand what is expected of them at night. Most children can be helped to sleep better however. 
  • External factors can contribute. For example, I distinctly recall feeling that I was so very grateful that Natty had survived heart surgery, that I would go to her whenever she stirred in the night, ultimately not helping her to settle. And also when your child is often poorly, you also have to monitor them more while they sleep.
  • Obstructive Sleep Apnoea is common in individuals with Down's syndrome, and occurs as a result of the upper airway at the back of the throat becoming blocked during sleep. Breathing will stop momentarily and the person wakes, struggling to inhale. OSA can cause oxygen levels to dip, often below 90%. One cause can be narrow airways and also enlarged tonsils and adenoids. Surgery to remove these can sometimes help, so ask your child's paediatrician. 

Ask your child's doctor about sleep solutions


Ways to help your child learn to sleep

  • Make sure that the child's bedroom is quiet and dark, perhaps using blackout blinds or curtains. Keep the temperature at a comfortable level, being too hot disturbs sleep. Try to keep background noise to a minimum, for example from a TV or conversation elsewhere in the house and make sure they are comfortable.
  • Make their bed is a place your child likes to be. Avoid sending them to their room as a punishment for example. Perhaps your child could help could choose a new bed or set of bedding. Make sure it is comfortable and they feel safe in it. Duvets that zip to a bottom sheet are available and some children respond well to a weighted blanket, although care must be taken to buy the right size and weight for your child. This lovely wooden teddy bear bed from Bed Guru with a side guard also helps prevent wrigglers from falling out. 

Teddy bed with side guard from Bed Guru


  • Daytime Routine will help. Make sure your child has regular meals and plenty of fresh air and exercise during the day but avoid stimulating activities in the hour before bedtime. Try to prevent them from having naps during the late afternoon. If possible, wake them and settle them for bed at the same time each day to help strengthen their circadian rhythm.
  • Make sure you child does not go to bed hungry or thirsty, but it isn't a good idea to give them large amounts of food or drink during the night. Avoid caffeine and additives in your child's diet and offer them a warm milky drink before bedtime instead.
  • Bedtime routine is key to helping your child fall asleep in their own bed without your presence. Let your child have a relaxing bath and maybe some quiet play, then a calming story together is a good idea. Some children like a little back massage or foot rub. You might find a mindfulness CD helps. You can exaggerate the cues that it's bed time, such as dimming the lights and closing the curtains then hugging and kissing the child, using the same phrase wishing them a good night each evening. Consistency is key, as is staying calm and relaxed yourself. Not always easy I know!
  • Introduce a reward system if your child does well.

Professional Support

  • If you have tried all the above there are help programmes devised by professionals at the Down's Syndrome Association, Cerebra, the Children's Sleep Charity and Scope have a Sleep Right service with practitioners on hand to tailor make a sleep plan as well as workshops which you could try.
  • Some children need to have tonsil and adenoids removed to open their airways, others are prescribed Melatonin as an aid to sleep. Ask your child's doctor for their advice.


Resources

  • Blackout blinds
  • Story books about sleep
  • Weighted blankets (to be used with caution)
  • Mindfulness, relax or bedtime story CDs
  • Alarm clocks that tell you when to wake
  • Relaxing bubble bath or massage oil
  • Zip-down duvets or a bed side guards
  • Reward charts


*I was compensated for my time to work with Bed Guru on this post. 



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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