5 yo and awful bedtime/lack of sleep - Help!

[MayorofMunchkinCity]

Help and advice needed before I lose the plot! DD is 5, has sensory processing disorder (and traits of aspergers though not enough for a diagnosis) - sleep and going to sleep has always been an issue. She never sleeps through the night, at the moment our routine is she goes to sleep in her bed and can get in with us when she wakes in the night. Sometimes she then sleeps with us and sometimes she's happy to go back to her own bed. She sleeps longest when she is in with us so we don't mind!

I felt it important she learn to fall asleep in her own bed though, but 5 years on I honestly don't know what to do. When she was a baby I did gradual retreat with chair next to her cot etc, it took weeks to make it outside her room. She has always screamed and said she's scared of being alone at night. She did have a period where she did a bit better when we first used a sticker chart but now she doesn't care about the stickers, she just wants to be with me.

I'm tired, so tired of the crying every night. Not sure what the alternatives are. I either stay in her room until she goes to sleep every night, or carry on doing what I'm doing (I sit in a chair in my room across the landing from her) which isn't working and involves tears, snot, shouting and hysterics for an hour or two a night.

Has anyone been in a similar situation at all? It's making me feel like such a crap parent, but my younger DD goes to bed fine so I don't think it's me being inconsistent. We have a very rigid routine as that's what DD needs. I'm so fed up! Help!

You have this in common with many parents of ASD so don't blame yourself. Lots of people use medication to help kids get off to sleep, and I did hear cherry juice has natural melatonin, which might help.

I hope some of the others come to your rescue, but it is tough on the whole family, and the fault of no-one.

Just wishing you all the best for tonight

Thanks so much for your reply senvet I was expecting to be told it was something I'm doing wrong/not doing, so your post made me teary. It's nice to know I'm not alone. Thanks for your kind words.

You're definitely not alone. My DT2 is a terrible sleeper and we have ongoing issues.

We may have to use melatonin but are currently completing sleep diaries as suggested by the specialist health visitor. Have you contacted them? In our area they are the first step to sort out sleep issues before medication. I was sceptical as I'm already queen of routine but our SHV has suggested a couple of ideas which I'm trying.

We tried cherry juice and it didn't work for us as he won't drink anything other than milk or water but it's definitely worth trying.

The only other thing I can suggest is get your DD's iron levels checked. I've recently found out that my DTs have very, very low iron and low iron/anaemia is linked to poor sleep. It takes a while to work and build up reserves but it works on the dopamine levels in the brain. It has worked for adults with restless leg syndrome. Worth asking your GP. Good luck!

This has really helped my nearly 5yo, plays lots diff sounds, lullabies, heartbeat etc and changes colour. He can start it himself so gives him a bit of control.

There is only the two of us so it is (relatively!) easy for me just to go to bed when he does and co-sleep. He has a double bed so I can have my own space, which helps.

Thanks for your help and suggestions. Deadwitchproject I haven't contacted HV team as I have friends who did and they basically just told them to do controlled crying, which I won't do with DD as I think it's not very sympathetic to her needs when she's crying she's scared. I do leave her and say I'll be back in one song (she listens to her favourite lullabys) etc but when she's screaming and can't get her breath I can't follow the controlled crying "rules". Interesting about iron levels, she has looked pale and I've wondered about her iron levels before. When she wakes in the night it was many times, it's now better co-sleeping but even then she can just be awake for up to 2 hours in a night sighing and tossing and turning.
batfoxhippo that looks interesting, I'll look into that cube thanks. When she was a baby the only thing that stopped her crying was a white noise app on my phone - the oscillating fan noise which was the worst one for us- I would have preferred rain on a tin roof but no such luck!

poltergoose those are all the things we tried - the planned return used to work really well but now she's regressed to being scared to be alone for even 1 minute. Same with reward chart - worked really well but much as she wants the "prize" it's not enough for her to overcome whatever it is that stops her being able to stay in bed. We have been doing early bedtimes as past 6pm she is over-stimulated and meltdowns ensue.
It sounds like we have been trying along the right lines. OT really not supportive when she was assessed, (disagreed with consultant we saw that she had SPD as she was the one making the most noise when they visited her at nursery - we had long discussion about her coping meachanisms and her being the loudest in groups appears to be one of them - OT discharged us and said she didn't think she had SPD because she seemed to cope at nursery - even though she had meltdowns about going and was impossible to manage as soon as we got home, it's like she keeps it all in at nursery/school and when we get home it has to all come out!) we resorted to private assessment and can't afford to go back again at the moment.

Ooh I could put a fan right outside her room - I bet she would find that soothing. Or I may resort to finding the app I had on my phone when she was a baby and see if oscillating fan still works!

Thanks so much for that info poltergoose - I'll have a read. I feel that some days (actually it's only the odd day here and there!) the dismissive OT must be right as she wouldn't be able to hold I together at school if she had SPD/ASD, but most days am trying to manage her and am astounded that she appears to cope at school. It's so confusing - because that put doubt in my mind and made me feel like it was just me unable to manage. However she is so, so different to younger DD (I didn't realise how imaginative play looked until younger DD started doing it!) Anyway, thanks for your help and I'll take a look at the support thread too. Think I need to go and speak to school too.