Let’s Talk About Sleep (and Fragile X)
- Fragile X Society
- Jul 1
- 3 min read
We know that sleep can be a major challenge for many families affected by Fragile X Syndrome. Whether it’s trouble falling asleep, waking in the night, or very early starts to the day — it can take a toll on everyone in the household.
If this sounds familiar, you’re definitely not alone. Research shows that sleep problems are really common in children with Fragile X. But the good news is, there are things you can try that can help — and we’re here to share some of them with you.
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Why Sleep is So Important
Sleep isn’t just about getting some rest. It plays a big role in how we learn, behave, and manage our emotions. For children with Fragile X, a lack of sleep can make anxiety, hyperactivity or sensory sensitivities feel even harder to handle. And let’s be honest — when the kids aren’t sleeping, the rest of the family usually isn’t either!
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Common Sleep Challenges in Fragile X
Every child is different, but here are some of the things families often tell us about:-
• It takes ages to get to sleep
• Waking up several times a night
• Being up for the day at 4am (yes, really!)
• Restlessness or tossing and turning
• Tiredness and grumpiness the next day
And while these problems are tough, especially night after night, there are strategies that can help make things a bit easier.
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Tips That Can Really Help
1. Keep a consistent bedtime routine
Kids with Fragile X often thrive on structure and routine. Doing the same calming activities every night — like a warm bath, brushing teeth, a favourite story, and a goodnight phrase — helps their body and brain wind down.
2. Set up a sleep-friendly bedroom
Try blackout blinds, a white noise machine or soft music, and keep lighting low and warm. Red-toned nightlights are best if your child prefers not to sleep in the dark. And if the room is full of toys or bright colours, try simplifying things — less visual stimulation can help calm the mind.
3. Ditch the screens before bed
We know it’s tempting (and sometimes necessary!) to pop on a favourite show, but screens can mess with melatonin — the hormone that helps us get sleepy. Try switching off tablets and TVs at least an hour before bed and try a story, calming music or colouring instead.
4. Look at what’s happening during the day
Good sleep starts with good daytime habits. Getting outside in the morning light, keeping active, avoiding sugary snacks close to bedtime, and cutting out daytime naps (if your child is over 4 or 5) can all make a big difference.
5. Gradual independence
If your child needs you to fall asleep, it might be helpful to try gradual withdrawal. This means slowly moving further away each night until they can settle on their own. Not always easy — but sometimes really effective! Our Guide to Sleep includes some other strategies too, so please do let us know if you’d like a copy.
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What About Melatonin?
Some families do use melatonin, which can be helpful for falling asleep, though it doesn’t always solve waking in the night. It’s important to talk to a specialist (like a paediatrician) before trying it — and even if melatonin is used, a consistent bedtime routine is still key.
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You’re Not Alone
It’s easy to feel like you’re the only one dealing with sleep struggles at 3am, but trust us — lots of other parents are in the same boat. Things might not change overnight (pardon the pun!), but small changes can add up.
You don’t have to figure it out alone either. We’re here to support you, and there are some brilliant services out there like Cerebra’s Sleep Service: www.cerebra.org.uk
And if you’d like a copy of our Sleep Guide, sleep resources, a chat or more tailored advice, you can always get in touch with us at info@fragilex.org.uk
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Information with thanks to:
NFXF: https://fragilex.org/