Hating my life right now

[ChangedName1236]

My DD is 9 and a half. Has never ever ever slept through the night. Not once. Always needs me there and it can take forever.
She lacks confidence which I've tried so hard to help her improve but I can't even go to the bin store in our block of flats (would take a max of 2mins it's so close) without her needing to come with me.
She wants me to sit in the bathroom while she has a shower....the list goes on.

We've been through the health visitor which started when she was 2, onto the school nurse when she was 4, we've been to CAHMS and had 9 sessions there of CBT when she was 6/7.
Had an ADHD screening which upon the results was decided she didn't score high enough for the full assessment.

Finally got to see a paediatrician just before she turned 8 and was prescribed melatonin and phenergan for sleep.
Sort of works but I still have to sit outside her bedroom for at least an hour every night if not longer.
We follow the advice of the paediatrician to the letter - no screens for at least an hour before bed. Decent diet, plenty of exercise. Had dosage tweaked along the way.

Nine and a half years. All I want is to put her to bed and go and sit on the sofa.

Tonight I had her in bed about 8:15 and sat outside till 8:40. Thought it was safe to move. Nope.
Moved at 9:30 once she finally stopped wriggling about - I walked into the kitchen turned around and she was there. I'm so fed up I ended up telling her to F off and leave me alone. Not proud of myself at all but she went.
Tried to go to bed at 10:30 and she bloody woke again as I went into my room (past hers).
I'm at my wits end. She is constantly up my arse at home, constantly moaning about friends at school not letting her join in etc (she chooses to hang out with the ones who don't let her join in rather than the others who do)

I'm a single parent and work full time and just feel like running away. All I want is to have evenings to myself so I could call a friend for a chat, have a cup of tea or watch something on TV.

Sat in tears writing this so if you're gonna chew me up and spit me back out please scroll on

Short stories on YouTube

Or

The radio

I recognise a lot of the behaviours you've listed in my niece. I believe she is also under review of paeds.
Aware that my BIL and SIL let her listen to podcasts at bedtime and that seems to allow her to stay in bed on her own, I suspect she goes to sleep extremely late but at least they don't have to be there? Would that be the lesser of evils?
And very gently, you need to see what support you can put in place for yourself to ensure you can deal with this. What helps you when you feel totally overwhelmed?

What's brown noise

If the underlying cause of this is autism then my suggestion will probably be unhelpful but thought I'd share my experience.
Both my DDs refused to go to sleep unless DH or I were in the room with them and it could take anywhere up to 2 hours.

One day I decided enough was enough. I ordered an Alexa pop for each of their rooms and a bunny nightlight.
When they arrived, I told the girls that they were big girls now so we would no longer be sitting with them while they slept. We told them that so their friends go to sleep on their own now so they'll be able to tell their friends that they're big kids too.
Every night we read them a story, put them into bed and then they either listen to a Disney bedtime story on Alexa or some lullabies. Lights go off, nightlight goes on and we leave the room.
Most of the time they go to sleep but if they leave their room, we take them straight back to bed (unless they need the toilet or there's an actual problem).

I'd tried all sorts but being firm and consistent is what worked with us.

You are very welcome, although please don't think I'm some kind of expert - I'm only talking about my own/my child's lived experience and sharing information I have found out along the way....

Please don't think either that I'm trying to say "that's it, it's autism - no need to consider any other possibilities...." all I can say is that to me, based on my own and family experience, what you have described sounds very autistic indeed. And others clearly agree..... of course diagnosis comes down to formal assessment and meeting criteria, not just traits.

I m not sure whether you did the AQ50 "for her" or asked her own thoughts (appreciate that she is young) but masking can absolutely affect the outcome of screening tools like this, especially if people say what they think the "right" answer is, rather than really thinking about their genuine feelings.

I can definitely recommend the Autistic Girls' Network page already shared early on, and they have a private Facebook group too.... maybe worth joining (your daughter doesn't need a diagnosis for you to join) and seeing whether anything on there resonates? You will most certainly see other parents on there struggling with things like sleep and sensory struggles, anxiety etc. in their daughters,.and there are plenty of autistic adults there too. If you post in there (it is a private group and you can post anonymously too) you will get lots of advice from people with real experience of autism and issues very similar to your daughter's).

Do be warned that NHS waiting lists for autism assessment can be YEARS, but if you do feel that she could be autistic, the best thing you can do is to learn more about it, speak to parents of other autistic girls and ask about ways to cope and help.... it can often look very different from "normal" parenting, whatever that may be, but understanding is definitely the first step....

There is also a very good, short book called "The Secret Life of Rose", written by an autistic girl (around age 11 from memory) and her mum. Would definitely recommend this, although again just one person's perspective, and all autistic people are of course different......

Again, please do check out the website and Facebook private group for the Autistic Girls' Network for more info, and the National Autistic Society also has a good page on autism in girls and women. Worth a read at least :-)

This is what I was trying to say but got shouted down because she's possibly autistic. I think try this first OP purely because she doesn't have an ASD diagnosis and it would be good to at least try some form of discipline first. Gentle discipline!

You didn’t get shouted down and you didn’t suggest “gentle discipline” like the kind of thing @IHateLegDay is suggesting. You gave weird advice about punishing this child including telling OP to threaten her daughter that she would send her away and she would have to go and spend more time at her Dad’s, who OP has said she thinks her daughter is scared of. You’ve got no idea what you’re talking about. When my children were being diagnosed the developmental paediatrician said “in the mean time, while going through the process of diagnosis, do everything as though your child does have autism because to do so can only help but to not do so could be harmful and create more distress” and advised us of reading material that might help. You’re giving horrible advice and you should know that every single person on this thread who has experience of autistic children is rolling their eyes at you.

This, exactly! And if this girl IS autistic, which many of us with real experience have said seems like a very real possibility (and explained why we think this), "just trying" advice like yours could do real emotional damage to this poor child and take the feeling of safety away from what has until not been her safe and consistent place. This in NO way sounds like merely a discipline issue - it is clearly far more, and not a "badly behaved child". This girl is so obviously struggling badly and needs experienced, empathetic, professional advice, NOT threats to send her away if she won't (can't!) do what is being asked of her!

What a nightmare, stop beating yourself up, you need a big hug!

Welcome to my world OP!!

Dd11 ASD diagnosed three years ago.

Single mum too and for years we co slept as it's the only way I could get any sleep. She now has her own room but still doesn't sleep until very late so I feel your pain.

Does she stay in her room now or does she come out to find you?
I wouldn't mind if DD stayed in her room and read a book or something if she can't sleep but she always comes to find me...

@ChangedName1236 no she's in and out every five mins asking for things. Sometimes I am deep asleep and I wake to her standing over me!

Oh blimey you must jump out of your skin!

Sorry for all the questions - is she at secondary school? How does she cope day to day?

I have some suggestions that might be worth giving a go (though sorry if others have also suggested these, I haven’t read through the whole thread)

Transitional object: You both have something small and matching like a little squishy soft toy (perhaps your daughter can pick them out). She holds one, while you hold the other. Talk about how as long as she’s holding the squishy you’ll be holding yours too and you’ll be thinking of her, she just needs to squeeze it and you will too. (I’ve seen this strategy work well for younger children)

sensory wise:
lots of proprioceptive input before bed (think heavy work, resistance on muscles/joints)
Cardio based exercises are alerting so we want to avoid these
Lifting weights, yoga, Pilates, stretches, pushing, pulling are more calming input
deep pressure massage, being squashed, deep bear hugs
Weighted blanket / heavy duvet
Sleeping bag or fitted/lycra sheet (think swaddling a baby and how calming this is)
Push the bed against the wall
A long body pillow against her
A T-shirt or pillow case that has your scent on/ perfume/ body spray
minimise visual clutter (chuck a sheet or blanket over mess)
dimmed lighting
Alexa device: play white noise: ask your daughter to test them out (rain on a window is a good one)
headspace do some free sleep casts, there’s one called rain day antiques which is basically like the voice of David Attenborough telling the most boring story about a rainy day visiting the antique shop.
Sometimes children find it difficult to sleep because they are sensitive to quiet. My son would shout for me because he didn’t like the quiet at night. He now listens to rain sounds pretty much every night, it’s not harmful.
Protein before bed
Sleepy cream/ lavender pillow spray (feather & down is just magical)

Might be worth creating a little sleepy toolkit box and doing an experiment each night with a strategy, have your daughter rate it the next day so it’s something positive to look forward to at bedtime.

And personally, I would probably use a dose of positive reinforcement for my own kid but not make it a big deal if he couldn’t. Eg; For every night you stay in your bed until X time/Mum goes to bed you get a button/token and then 5 buttons = treat/motivator.
so that there’s always a chance to get more buttons the next day.

And also, with the transitional object. Is there something of yours she can hold on to, which she knows you wouldn’t leave without? Eg; I’m leaving my car keys in your room / my watch / my shoes.
That might provide some physical reassurance that you’re still there if that makes sense.

I hope you manage to find something that helps, it sounds really stressful. Wishing you all the best!

She's old enough now for you to explain why you need time off. Try tucking her in and saying, mummy is going downstairs now. I love you loads and you are safe and snug but I need to rest. i need to think my own thoughts and have grown up time. When you keep interrupting that I get very grumpy. I don't want to be grumpy and you don't want me grumpy.

If she's a bit scared of the dark, leave a low light on, make sure her favourite soft toy is there to keep her company.

And offer her a really good reward. If she stays in her bed and stays calm, you put a pasta shell in a jam jar for each night and when the jar is full, she gets a really good treat - a new toy or a trip somewhere she loves.

I have a 8 year old and the exact same issue. was sneaking out of bed and sitting on the stairs until older siblings bed time and getting more worked up by hearing scary storylines on TV programs. Doing well at school and no signs of autistic or ADHD but could not sleep on own/go upstairs to room/ grab socks/be on own in any room in house. I have two older siblings and no similar issues with them. I recently purchased a baby monitor with a camera and microphone so that I can hear/talk and see them and this is very comforting for them and it has been a game changer. I can now soothe from my couch with my cuppa and make sure stays in bed. I also got an Amazon Eco and play white noise to drown out the house creaks and a night light that has moving scenes. I’ve now noticed that they will go and get socks or put clothes away upstairs when asked so seems to be helping all round. The baby monitor was £50 from Argos. I still read a book and have a ten minute hug in the bed before leaving and on the monitor say in gentle tone please close your eyes/lie down etc. they will still have difficult nights but I just sooth and say I’m here watching you on camera, nothing to worry about/I can hear every noise and it’s just the sounds of the house. It’s worth a try for you

@ChangedName1236 I do!!

Mm secondary school that's a whole other thread ! She started in September and hasn't been in since before Christmas as she simply can't handle it. Currently pushing for an ehcp.

OP others might disagree with me but I think you're putting her to bed too early. Mine are 9 and 11. They potter around drawing or playing from 8. Have a small supper at 8.30 (fruit and milk) In bed between 9 and 9.30. At 9.30 I read them a chapter of a book so it's close to 10 by the time they're going to sleep. Some might say that's too late but I know neither would sleep at 8 or 8.15 the time you're expecting your DD to. They wouldn't stay in bed reading from that time either. It'd be too long.

OP that sounds tough.

Can I ask what her view on it all is? Does she understand the impact on you? Can she suggest any solutions? Does she see the sleep issue as a problem?

No wonder you are at breaking point xx

I haven't read it all,but we gave our autistic child audio books to get him off to sleep ( and in many other situations) and that gave us our evenings back

I suggest you need to set up a strong repeating routine which might give her a better rhythm, send quality time with her in the day then repeat the same steps each night.

Won't do any harm if she isn't autistic either

Good luck, it's tough.

Oh you poor thing, that sounds incredibly tough. I'm afraid I don't have any words of wisdom but just hoping you can rest while your DD is at her dad's and that you get some help and answers soon

Hi Tweedle,

Yes I think she does as she can tell it stresses me out when she has a meltdown like she did the other night and she caught me wiping my eyes too.

She knows the sleep is a problem and she hates that she can't 'do it'.
She's missing a school trip to a residential that she would have absolutely loved during the daytime (think raft making, rock climbing) but she wouldn't cope with the evenings. I couldn't justify spending £350 to go and pick her up the same day. It's been heartbreaking for us both. Gave her the choice but said if you are going you are staying.

We've tried a lot of things suggested by others too - she has a teddy that she got when she was 2 and absolutely loves, he goes to bed with her every night. She has a small night light in her room and another in the hallway.
We've tried listening to white noise, stories on the Alexa/audible, tried Cosmic Kids yoga which she just ended up laughing and not doing properly. When we went to CAHMS they gave us a book called 'The Pants of Peace' tried reading a page of that each night which was like me reading meditation instructions but she wouldn't do it.

We have weighted blanket but she didn't like that - she goes to bed in just a pair of pants here (and a vest at her dads, I'm trying to make her wear a vest here too) and a summer duvet - she hates being tangled up in PJs and won't entertain a thicker duvet yet will let me put a light blanket over the duvet - work that one out!

I could try letting her stay up a bit later but by 8pm I'm desperate for an hour or 2 on my own (usually 9/9:30 by the time I sit down) and I get up at 5:30am so try to go to bed by 10:30 although I know as she gets older she will go to bed later and I'll have to suck it up.

That sounds really tricky. What do you like to do that counts as 'me time' after she's gone to bed?
Would it be feasible to do something for yourself earlier while she reads/plays/listens to music but can still see you. Obviously depends what you want to do - might be awkward if your chosen hobby is watching X-rated films or something... Not ideal I know but you would get some time for you and maybe might help your feelings of desperation and urgency to get her into bed so you get a bit of peace (I've been there though for different reasons).
Good luck.

Have you tried maybe a baby monitor that's two way audio so you can speak to her while you sit downstairs and she knows you are there If she needs you/needs reassurance?

I like to watch a soap without being interrupted and I also love things like 24 hrs in police custody so she couldn't watch that.
I'm also doing a course at work so study time would be good too as I'm finding it a bit tough to revise (exam coming up).

We live in a flat so if I went to sit on the sofa there is literally one wall between us.

Someone mentioned a baby monitor - I have got one which I can talk to her on but recently stopped using it as in my mind 'she's 9.5 yrs old I don't need this anymore'

As an update for everyone who has kindly posted, she has been better since Wednesday night when she kicked off massively. I still have to sit in the hallway till about 9ish and I managed to re-set at the weekend while she was at her dads which I think did us both good.

We need to work on her confidence at being left in her room and in general her confidence, why it is she can't just drift off without me being near, and the sensory issues (I plan to speak with the paediatrician at the next appointment about the above)