Sleep deprivation in a child with disabilities – I could write a book on this. I haven’t slept properly, blissfully, undisturbed since – I know the precise date – the 17^th of June, 2007- the date my son was born. Aside from the few odd nights of child care over the years where I have slipped away into a truly deep sleep, I am generally woken 4-5 times a night by my son.   

I can remember from very early on being surprised by my new-born baby boy only sleeping for a maximum of one hour before waking up again. As I have seen him outgrow baby-grows- step into PJ’s and then into teenage onesies, bedtime is a time of the day I have to carefully manage.

For any parent with a child with a disability this is very familiar territory – sleep-ness nights from early days to teenage years. Clinical research evidences this. Professor Carin Lamm MD  Director of Paediatric Sleep Disorders Centre at Columbia Universities’ Medical Centre reports sleep problems are as high as 80% in children on the Autistic Spectrum*.

Recently I was asked to try to explain this to a friend – who wanted to know why this is? From my own experience of having a son on the Autistic Spectrum Disorder (ASD) he has a very active mind, easily stimulated and so it can be very hard for my son to ‘come down’ (if you will), to settle. Because of this he is a light sleeper. Any small noise he wakes, his little voice whispering to me from under the covers; ‘mum is there someone in the house’? He needs lots of re-assurance to soothe his worries, and often the big bear hug cuddle he wants sends him to sleep, leaving me fully awake.  

As a working parent sometimes the only option is for me to sit up late with him knowing he will need some re-assurance, rather than go to bed and go to sleep, only to then get up again. I know he also has, as part of his ASD really vivid dreams. The cross-over from muddled fantasy back into the reality of the bedroom takes time and more twilight re-assurance.

Research published March 2018 within The Journal of Neurodevelopmental Disorders identified sleep problems in children with developmental disabilities*. They can find it hard to fall asleep, wake in the middle of the night and wake very early on. The research used parental questionnaires and found out sleep problems were more frequent in certain neurodevelopmental disorder groups. Children who have Angelman Syndrome and those who are autistic experience severe night waking problems (over 40%), and also problems falling asleep.

At Cherry Trees, we have children visit us who have both Angelman Syndrome and also Tuberous Sclerosis Complex, whilst 60% of our children are autistic, so ‘sleep issues’ are frequently talked of. Often when talking about life at home, parents regularly tell us how hard it is coping due to endless sleepless nights due to their child waking. One parent recently told us thanks to funding from The Big Lottery, her daughter’s one night stay a month means she and her husband can sleep right through and not be woken up at 11:30pm, 1:30am, 04:30am…. Enabling them to get up for work, fully refreshed. At Cherry Trees we have just celebrated the efforts of one of our Night Carers – Jill Tennant who has given us 25 years’ service, caring for children that stay overnight with us at Cherry Trees. She is a true night-owl-queen stepping into the shoes of worn out parents as the moon shines out.

I know from my own son there are some things we can do to help lessen the troubled evenings. He really likes the installation of our sound and light projector, slowly dimming our lounge with some gentle relaxation sounds in the background. I’m also mindful of his bed-wear, 100% brushed cotton and fluffy helps edge him towards being snuggly. Cutting out hot drinks like hot chocolate is better for him and finally lavender oil on the pillow really helps ease him too. As the nights deepen and we miss the longer days, take a moment to be thankful for the chance to sleep right across the night – for some the winter nights are much longer.  

Author: Debbie Boulter

Research: Anna Reid

Literary sources: 1) https://www.autismspeaks.org/sleep

 2) https://blogs.biomedcentral.com/on-health/2018/03/01/exploring-sleep-problems-in-children-with-developmental-disabilities/

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