Believe me I know about a lack of sleep! Neither of our children slept well for years. Anxious parenting, light sleep patterns, apnoea and SEN all seemed to conspire against us.
I remember the fog of exhaustion, the never ending hamster wheel of getting up and down to calm a woken child, rock them to sleep, pat their tummies, find a lost dummy and then giving up and letting them climb into bed with us, feeling beaten and at the end of my tether. It’s hard to cope with anything that life throws at you when you haven’t slept.
Up to 50-60% of children with a learning disability have a sleep problem
People said we should be tougher, stick to a rigid plan, ‘let them cry it out’. But how can you do that when one of your children is frequently unwell, when you have feared for their life during heart surgery or bouts of croup? How can you ignore that there may be a physical reason for the waking?
Eventually, with consistency, a couple of tonsillectomies and a weighted blanket, they did both ‘go through the night’. If you are struggling too, you might just find that some of these tips work.
1: The right environment for sleep
Keep noise to a minimum and swap tablets and games for a quiet story together. Make sure the room is a comfortable temperature, not too hot as this will cause restlessness. Black out blinds are a good investment too, as are dimmer switches or softly glowing night lights. There are some 'sleep training' clocks on the market too.
2: Learning to Sleep
Children with SEN are often unsure of what is expected of them at night and, believe it or not, we all need to learn how to fall asleep. So following the same relaxed routine each bedtime is essential. Stick to a regular bedtime, make sure your child has had a small drink and is not hungry or needing the toilet and wake them at the same time each morning. Our routine consisted of a relaxing bath, drink of milk, toilet, a story and bed with a cuddle and kiss.
3: Eliminate
- High energy activities or lots of excitement before bed.
- Electronic gadgets.
- Stimulants such as chocolate or cola.
- Too many naps during the day.
4: Have You Considered...
Your child may have obstructive sleep apnoea. If you are concerned, ask for an overnight sleep study which might indicate that adenoids and tonsils need to be removed.
Your child may be popping out of light sleep and a weighted blanket might help them stay asleep, but they must be measured for each individual who must be able to remove them independently for safety.
Some children eventually need medication to help them get the sleep they need. Discuss this with your child's paediatrician or GP.
5: Shopping List
- Blackout blinds
- Stories about bedtime
- Glo clocks or rabbit clock
- Made to measure weighted blanket
- Dimmer switch or soft nightlights
- Gentle lullabies or calming music
6: Don't Suffer Alone
Do reach out for help. It could make all the difference.
If you have concerns about your child's sleep, your first port of call should be your GP or Health Visitor who can rule out physical problems and signpost other professional support.
Sleep Solutions provide workshops and tailor-made sleep programmes supported by charity Scope.
The Down’s Syndrome Association has lots of information on its website, from sleep programmes to possible medical intervention.
NHS Choices has information on night time problems in children including how to tackle nightmares and night terrors.
Ask a family member or friend to take charge while you factor a nap into your day. Exhaustion can have very real consequences.
She has campaigned tirelessly for inclusion, equitable education and healthcare over the years, and trains medics and teachers to this aim.
Hayley, along with daughter Mia, has published a book for children called I Love You Natty as well as contributing to many other books and publications, such as The Huffington Post, Special Needs Jungle, The Telegraph and Nursing Times.
She delivered a TedX Talk dispelling the myths around the condition and appeared in Sally Phillips’ BBC documentary A World Without Downs.
Hayley is often called upon to give comment in the media and she and her model daughter, Natty have popped up on The Lorraine Show, Channel Four News, Loose Women and more, but her stories always remain extraordinarily ordinary.
- Campaigning for inclusive education for children with Down’s syndrome - May 18, 2022
- Heidi’s Down’s syndrome abortion case: It’s complicated - November 10, 2021
- 21 Resources for Trisomy 21 on World Down Syndrome Day - March 21, 2018
Thanks for this Hayley.
Our daughter has Down’s and although her sleeping patterns have been random, she is only now developing a rhythm after 4 years. Every child and every day is different when your child has a SEN – there may be some evenings where it is still bright and hot and for that reason they stay awake – and others where due to her immune system being weak she may have succumbed to a long-lasting flu leading to dozens of coughs per night.
She still of course wakes up at 6am so we have at least saved on the need for an alarm clock! We have had to acknowledge that bringing up our daughter is tiring and thus we need to find time to rest – but it has been a rewarding experience.