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Neurodivergence and sleep - 3 year old

6 replies

Sunflower1650 · 28/02/2026 11:44

DS2 is 3.5 years old. He has never slept through the night. Not even close. He continues to wake more frequently than a newborn would. He can wake around 10 times per night. He sleeps in a bed attached to our bed, but still ends up sleeping right next to me and sharing my pillow. Despite being right next to me he wakes just as frequently. Between 8 and 16 months old he did sleep in his own room but he still woke just as frequently so we moved him back into our bedroom so that I wasn’t having to get out of bed.

He doesn’t nap anymore (stopped around age 2.5). He goes to bed at 7:30pm and falls to sleep quickly, because he’s absolutely knackered all day. I don’t think sleep pressure is too low because he seems exhausted and nursery always tell me they’re concerned about how tired he is.

From about 11pm he wakes constantly through the night. He will sit up and often his eyes will be closed but he sways from side to side mumbling to himself. I lie him back down and then he sits back up. This can go on for ages. When he “wakes” it’s like he’s still half asleep but won’t lie himself back down without me helping him. He is also a very restless sleeper, rolls all over the bed, talks/shouts in his sleep, sometimes points at things in the room that he says are there but aren’t, tries to climb out the bed when he’s half asleep. Some nights I feel like I am being woken every few minutes. It’s like he can’t go into a deep sleep. He never just lies still. We have tried sleeping with him in his own bedroom rather than our bed, but he is inconsolable and doesn’t want to be in his own room.

He has a heart condition which needs surgery soon. His cardiologist said he can’t see a physical reason why he would wake so much. I do sometimes worry about sleep apnoea as he sometimes makes gasping noises and does a lot of mouth breathing so maybe I should get this investigated.

He is an incredibly anxious little boy with a lot of social and sensory issues. We are currently awaiting an autism assessment. We are a year into the waitlist and still got about 1.5 years to go. His older brother DS1 (nearly 7) is autistic and has ADHD, he is on melatonin prescribed by his paediatrician which has been a godsend but his issues were getting to sleep and lying awake for hours, not wakefulness.

Importantly, he occasionally still has breast milk. I know I should have stopped this a long time ago but he won’t accept DH putting him to bed or caring for him in the night. He screams if DH tries. Some nights he doesn’t have any breast milk but still wakes just as frequently. About a year ago I was convinced he woke so much because of the milk so I dramatically reduced feeding him overnight but it’s made no difference whatsoever. Often when he wakes he doesn’t want any milk.

I’m worried that his sleep issues are linked to his neurodivergence. If this is the case then I can’t see anything ever changing. I feel like a broken shell, I am so so tired. I haven’t spoken to anyone in real life who has had sleep issues with their child to this extent. Does anyone have any advice at all please?

I have tried everything I can. Weighted blankets, later/earlier bedtimes, no screen time, calming baths, white noise, no white noise, he’s always had a solid routine before bed and had no issues in falling to sleep. He just can’t stay asleep.

OP posts:
Nickthechick1 · 28/02/2026 11:53

I don't want to give you false hope, but our cardiologist said that our son's sleep problems would likely be sorted after heart surgery at a similar age and indeed they were (though it wasn't immediate - it took several months for things to improve). He now sleeps through the night most nights.

The other thing that helped, though counterintuitive, was going to bed earlier - asleep by 6pm - but he does wake very early!

AirMaster · 28/02/2026 11:57

https://thesleepcharity.org.uk/ contact the sleep charity today! If anyone can help you it's these guys. We self referred last year and have just started working with them and for the first time basically since my 5yo was born I have hope that sleep might not always be like this.

Solidarity, lack of sleep is torture. I have prematurely aged a huge amount in the past five years, I genuinely look 15 years older than I am 🤦

Home - The Sleep Charity

Supporting people across all ages to improve sleep, and provides sleep training to professionals in the health, social and corporate sectors.

https://thesleepcharity.org.uk

Sunflower1650 · 28/02/2026 18:05

Nickthechick1 · 28/02/2026 11:53

I don't want to give you false hope, but our cardiologist said that our son's sleep problems would likely be sorted after heart surgery at a similar age and indeed they were (though it wasn't immediate - it took several months for things to improve). He now sleeps through the night most nights.

The other thing that helped, though counterintuitive, was going to bed earlier - asleep by 6pm - but he does wake very early!

Thank you for sharing. I really hope this is the case for us because then it’s only a few more months. But at the moment I just can’t see any end to it. I am drained. Do you mind me asking what heart condition your little one had? DS has a large atrial septal defect and leaky valve - they are hoping to repair the valve but we’re not sure if it’ll need replacing yet. I did wonder if his sleep issue could be heart related and whether his oxygen levels could be fluctuating but his cardiologist didn’t think there could be any correlation :(

OP posts:
Sunflower1650 · 28/02/2026 18:06

AirMaster · 28/02/2026 11:57

https://thesleepcharity.org.uk/ contact the sleep charity today! If anyone can help you it's these guys. We self referred last year and have just started working with them and for the first time basically since my 5yo was born I have hope that sleep might not always be like this.

Solidarity, lack of sleep is torture. I have prematurely aged a huge amount in the past five years, I genuinely look 15 years older than I am 🤦

Thanks very much. I will contact them this week. I have reached a point where I cannot take anymore. I am a shell of the person I once was.

OP posts:
AirMaster · 28/02/2026 20:03

Sunflower1650 · 28/02/2026 18:06

Thanks very much. I will contact them this week. I have reached a point where I cannot take anymore. I am a shell of the person I once was.

I can sympathise so much! Nothing can prepare you for years of sleep deprivation. I have googled "Can you die from lack of sleep" more than once! It's one of those things that people don't really understand unless they're in the same boat. I hope things get better for you soon.

Pixiedust49 · 28/02/2026 20:14

DD was like this it was beyond exhausting. I ended up buying her a double bed when she was 4 and slept in it with her and even then was it hard. It’s honestly the reason I didn’t have any more children. Nothing worked. She’s now 17 and sleeps for hours on end! She was 12 before she slept consistently well and alone.

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