ASC daughter, 9, still co-sleeping. Advice?

[sleepworkmum]

My DD was always a great and independent sleeper until about 15 months ago when she began getting into bed with us or needing someone in her room most nights. It deteriorated and so for the last 12 months I have had to be in her bed at least while she falls asleep (takes hours) or more often than not for the whole night. (she has a small double - it's a squish but it works).

My DS, 6, immediately mirrored this and now sleeps with DH. I haven't slept alone, or with DH, for the last year. Bedtime is a 2 hour performance, where everyone is calm but we are basically held to ransom by DD's needs. DH and I both go to bed at 7 or 8, in separate rooms.

It's frustrating, and honestly a bit of a weird situation.

DD has had an extremely stressful time at school in the last few years which is what triggered all this. She has a huge dependence on me, and while school is going ok we are happy to lean into it. For now.

But, my questions is, how long is this going to last??

How do I ever reverse this situation?

It is hard.

I have a teen who still co-sleeps for at least part of the night. We have tried everything we can think of and everything professionals have suggested. W hile things are better than they were nothing has solved it. I am not sure DS1 will ever be an independent sleeper.

We have tried various lighting, a 2 way monitor, walkie-talkies, doodle book/pillowcase, worry book, tents, weighted blanket, music, white noise, dream pad pillow, ear plugs, teddy, relaxation, various apps, brushing, audiobooks, meditation, adapted version of gradual retreat, elastic band method, sleep clinics, medication…

Does DD take anything to aid sleep? If so, I would be asking to try something else as well or instead of. If not, I would be asking to try melatonin.

Unless DS also has additional needs I would also be transitioning him back to his own bed.

@Headfirstintothewild we did try a few of those things, and the doc prescribed antihistamine for a while which sort of helped get her to sleep easier but they only prescribe it for two weeks max. I will look into some OTC stuff.

Yes, we want to transition DS back to his own bed. he sleeps there the last few nights but we have to lie with him until he drifts off.

Promethazine can be bought OTC, but you will have to lie to get it because it isn’t licensed for aiding sleep in DC.

You could also request a referral to a sleep clinic. They can look at other medication you could try. There’s lots of different ones that may help.

I had this issue with DD (8). Melatonin gummies from Biovea website, 5mg ones cut in half so 2.5mg every night around 30 minutes before bedtime. The only thing that worked getting DD back in her own bed after 6/7 years was a bedtime reward chart - she got a reward of her choice at the end of the week if she got a whole week of stars every morning, a star for every night she stayed in her own bed. Good luck, I know from experience how draining this is and it’s almost been life changing have my bedroom back to myself.

My son co-slept with us until he was 7 (non-verbal and autism) and then we put him in his own room and surprisingly he was fine with it.
However, bedtimes were still a nightmare, it would take hours to get him to sleep and then one of us had to stay with him.
If he ever woke up in the night he would come and get into our bed.
Then last summer (when he was 11 and a half), during one extremely stressful bedtime I needed a break and just left his bedroom, shut the door and sat on the stairs for 10 mins.
When I went back into his room he was tucked up in bed asleep.
We now put him to bed later. It used to be between 8 and 9pm (then we had a 2 to 3 hour fight to get him to sleep).
We now put him to bed at 10pm, say good night and shut the door.
Sometimes he goes to sleep straight away and others he will sit in his bedroom window for a bit.
When we go to bed between 11pm and 12 he is usually in bed asleep.
I now think we were putting him to bed too early, he wasn't ready for sleep between 8pm and 9pm.
He also didn't want us in their fussing him. He wanted some quite alone time but being non-verbal he couldn't tell us that.
11 and a half years of nightmare bedtimes finally over. (Touch wood)

Everyone, thank you. This is all extremely helpful and reassuring advice. I'll discuss with DH about what might work for us. Thank you!

I very slowly started changing things. Stopped lying in the bed and just sitting next to DD until she dropped off. Then sat on the floor holding her hand. Then just sat on the floor next to her bed. Then in the room. Then outside the room. I would then say I'm putting washing away and be in my room and pop in every minute or so. Slowly extending this time. Would also have music playing. At one point we kept the music playing all night long (a cd on repeat!) 4 years later we still put music on at bedtime. Either 'plinky plonk" music - you tube 8 hour lullabies for baby to sleep to. Or a very calming cd - can't remember the name. Will post it later.

To deal with the night waking - you have to be strict with yourself and plan for a week or 2 of no sleep! Every time they come in, bring them back to their bed, and sit with them till they sleep (so depending where you are at with the bedtime sleep- that's where you position yourself). Good luck!

First of all, your situation is not that weird, in my friend group, it is kind of the norm, or a bit of musical beds! We had a similar situation, DD has previously slept well on her own but we did renovations to the house that took forever, while we worked on her room, she slept with me for a while, then when our room was getting done, I slept in her new room with her. Once our new room was ready, she followed me in and slept there for a while, I thought this would last forever, but we broke the habit relatively quickly.
We started by letting her sleep with me on weekends, I think the thought of never being allowed back in was too much for her, so when she knew she could have a couple of nights with me it seemed to work. Also, she’s at that age where sleepovers are a thing, I told her she wouldn’t be able to go to any or have friends over if she is always in bed with me…that give her the motivation she needed. And thirdly, we’ve given up on evenings after the children are in bed, at 9 she doesn’t need that much sleep, she goes to bed at 9pm and I stay upstairs reading. It suits me fine as I get up early and being on same floor is much easier than same room. Hope that helps, I really don’t think it will be forever!

My DD co-slept til age 2.5, then was in her own bed fine but has always needed company til she falls asleep. She went into hospital for while at the start of the year and since then ( at almost 9yo), she's been sharing my King Size with me and toddler sibling most nights, with DH in her bed instead.

It won't be forever, and you're doing a great thing responding to current needs. We have found making it a rule that one or two nights a week she sleeps in her own bed and DH gets her to sleep then joins us in the King helps. We had to leave music playing all night for her and do the "I'm just going to hang laundry to dry for five minutes , then I'll be back to sit with you again" tactic helped with getting her off to sleep in her bed.

Our son comes into bed with us In middle of night when he wakes (age 3) daughter (6 near 7) hasn’t slept in bed with us since we did the “check you in a minute” routine. Putting her in own bed story, song then settling in bed, explaining before hand that we won’t be staying in the room for hours on end but will be checking regularly, check 1 minute then come back check again, at first it takes aggggessss but now she goes to sleep as soon as we leave the room. Planning to do this with son when he is older as atm he only goes sleep if we are in room but it only takes sort of 10 mins. I’d do this with both of them. Sit them down before bedtime and explain the new routine and what’s going to be happening from now on. If they get out of bed when you leave you put them back in calmly no talking, just back in bed then “check you in a minute” “check you in 4 mins”. At first I said it was. A min but it was actually like 30 seconds. Good luck

DH or I have to sit with DS (7) until he falls asleep. He is ADHD/ASC but once he’s asleep we can quietly creep out. I’m sat on his bed typing this as I tried to leave 10 mins ago and he wasn’t deeply enough asleep 🙈

He has an audiobook playing, a sensory light that projects stars onto his walls and ceiling that has a timer that goes off after hour (but can be set for longer) and an essential oil diffuser with lavender oil in. It’s a bit cheaper than the Nat Patches (although we use those for school at the moment). He also has his special teddies (Toad and Mario and a sealion he got from the zoo when he was a baby).

He does have a weighted blanket that we used to use whilst trying to get him to sleep in his own room but he hasn’t used it for a while.

He keeps a pillow on our bedroom floor and if wakes up he comes and lies on our bedroom floor. He used to get in our bed but started using the floor once his little sister kept getting in our bed earlier in the night than him 🙈🤣

It is slowly getting better and he sleep longer in his own room and recently sleeps until around 6am in his own bed most nights.

With DD who is nearly 3 (not sure if she is neurospicy or just a toddler but she is different to DS at that age so she may be NT) we had to break the cycle as she was using us as a way to keep herself awake so we did lots of hugs and kisses, it’s bedtime now, night night, I love you, see you in the morning, left the room and just repeated until she stayed in her room. Most nights now she just stays put, occasionally she’ll come out once or twice and we just repeated the process of kisses and cuddles etc then leave. It never worked for DS hence why I’m still lying on his bed but it did for DD.

To be honest my DD is 8 and we do a combo of her sleeping by herself in her room (often all night), with me all night, coming through to me. Could you give her more choice? Try to be as relaxed as you can be but just say, ‘I know you can sleep on your own as you used to, would you like to try again, knowing you can come through to me if you need
to and I’ll come back to your bed’. So she has more control. I tend to guage her needs (has she had a v tough day at school and needs reassurance) and mine (I don’t sleep so well with her so if I am very tired - I encourage her to start in her bed) but I do let her read until she feels tired/give her control of when light goes off to some extent. Tonight she read for about an hour and then I said (it was 10pm) ‘Darling I think you can try turning light off and sleeping now’ and she did. She was asleep very quickly - I gave her the choice of coming into my bed but she was okay in hers. I do appreciate it’s harder when you have a DH. I don’t think it will last forever as she used to sleep through. Same with my DD. In case of my DD, she is able to go to her dad’s and has been on occasional sleepovers and been fine, so I think it is a phase. I’m sure it will be for you too.

my daughter just turned 10 and this was my life for a few years too.
she suffers with anxiety and too had traumatic experiences at school and also a massive dependence on me where she couldn’t be in a different room ever.

but with some hard work from both of us we have fixed this, although her preference would still be to sleep with me but we both recognise that it actually makes her anxiety worse.

First of all I will say her therapist through CAMHS was amazing and gave her the tools to see her anxious thoughts were not always real.

secondly specifically on bedtime I read a website about older children’s bedtime issues and implemented one of the plans.
simply it was they lie down and you check every 10 minutes without fail. No stretching it out, no being late. I set a timer on Alexa in my own bedroom. However if they shout out the 10 minutes starts again from that time.
if they shout out you do not engage but simply pop your head in and say goodnight. If they make the 10 minutes you can go in and stroke hair, give kisses whatever your style is for a few seconds.
set the timer again etc.

It’s painful the first few nights but once my daughter knew I was coming back every 10 minutes she started to relax and now goes to sleep independently.
when she’s particularly anxious we still do the 10 minutes and there are occasions she wakes in the night and I return her to her room without engaging and again do a 10 minute timer but in the night I think she has been asleep everytime.

she would also stare at a nightlight in her room to keep herself awake so now that’s on rhe landing so it’s a soft glow and obviously we do all the no electronics, reading and again I started using timers on the Alexa for everything and she has one in her room. So if is 20 mins of reading she knows exactly how long is left and can see the time for the mornings so I say she can get up at 6:30 etc.

Sorry that was a long post but i hope any of that helps, I know is tough when you can’t see when it will end. I know my situation wouldn’t have ended without any of the above and she would still of wanted to sleep with me for years and I still feel a bit mean but am so much happier being able to have some time in the evenings and it’s done wonders for her confidence outside of bedtime too.

good luck!

Again, thank you all. This is all very reassuring and practical advice.

The challenge for me is that she is so very controlling about bedtime, and will often kick off until I agree to spend the whole night with her. Sometimes we agree something in advance - that we only watch 2x 20 minute episodes before bed or that I leave after she's asleep. But, when it comes to it she kicks off and it's impossible to follow through.

Like, last night: I've been sneaking off after she falls asleep for the last few nights. But, she woke up last night at 2am and when I wasn't there she screamed the whole house down and probably woke the neighbours. She was then horrendous to me when I got back in with her and was a nightmare this morning. Bedtime will be difficult for the next couple of weeks now as a result.

I know that because she is ASC I need to give her more ownership of the transition and agree everything in advance, but she gives absolutely no ground and always reneges on any compromise we agree.

I think I'll try the melatonin as a starting point for smoother bedtimes and better sleep. Hopefully it will help bedtime take up less of the evening, and I can start agreeing transition steps with her after that.

Have the problems at school been sorted out? Because dealing with the cause of her anxiety has to be your first step I would have thought.
My autistic 9 year old still sleeps with me, he used to find going to sleep really hard but he's so exhausted after playing loads of football that he sleeps more easily most of the time. If there's something he is anxious about though he finds falling asleep fairly difficult, wakes in the night and then wakes really early in the morning. It makes so much difference. So I would definitely try and work on the daytime stuff and not just concentrate on setting bedtimes.

@littlebox , yes definitely there's a direct link between what's going on in the day and at bedtime. We took a six week break from school and her sleep slowly improved, but her control over me and bedtimes did not. She went back into school for a few hours a day after easter and has been doing well, but something happened - we're not sure what - that has triggered more distress and so the last week has been really difficult.

As I said in my OP, we're happy to lean into her needs at bedtime while we try to address what's going on in the daytime. Until the last few days I saw some (false) hope that we could start trying to improve things at bedtime. But she's just spent the last five hours in a violent rage tearing up the house so I am resigned to a few more weeks in her bed 😕. Hopefully we'll be able to figure out where the new distress is coming from and reset.

What support is the school providing? Does DD have an EHCP? If DD can’t attend school full-time is she receiving alternative provision?

@Headfirstintothewild school is being amazing and ok with intermittent attendance. They're providing some learning content and we are about to launch the EHCP. I'm not concerned about the school side as there are a lot of resources going into helping us work through that. Thank you for asking.

The school providing learning content isn’t enough to relieve the LA of its duty to ensure DD receives a suitable, full-time education. I mentioned it because it may be an AP like a care farm or similar would help reduce DD’s anxiety thus improving bedtime.

Put the siblings in together instead? Give lots of notice, make it seem exciting. Explain mummies and daddies need to sleep in the same bed.