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

Hi op. I'd second the suggestions to having your dd assessed for ASD. My 11 year old dd is similar in lots of ways you're describing your dd. Sleep wise, the issue with her has always been clinginess. I remember as far back as when she was a toddler having to soothe, be present for far longer than I had to with my other two dc. Unfortunately it recently got worse (which I believe is linked to her sudden school avoidance on starting secondary) and a new routine has emerged which sees me having to be in her room with her until gone midnight every night now. I'm someone who naturally goes to bed at 930pm and I'm up at 6 every morning so I'm hating my life too right now. I do have dh but the truth is as soon as bed time kicks in it's all me. She doesn't view dh as a person who can give her what I do at bed time (which he can!).

And also want to echo what pps have said : my dd up until recently refusing to go to school, was always "fine in school"- they couldn't see a single thing to support the fact she might be ASD.

I have nothing to offer but a handhold and to say I'm very glad for this thread because I'm on my knees with exhaustion (work full time) and just knowing others are going through it helps

Op I'm so sorry. I'm also a lone parent and went through the same. I co slept with mine for years. She was diagnosed ASD and ADHD at 11. Girls are notorious maskers at school which is why mine often had a meltdown after school, exhausted from masking and all the noise etc

Definitely go for ASD assessment. Other things that helped when I got her out my bed when she was about 6 were:

Bath every night
Galaxy projector
Reading to her
Cabin style bed

I know sleep is a premium as a lone parent working full time so I do understand just how bloody awful this situation is for you.

I mean is it any wonder her dad has left her and she’s probably worried the only person she has left will leave her too. It’s so sad so many children have to grow up without a father these days.

Oh shut up, she still sees her father she isn't growing up without him! Get a grip

Very much so, and from personal experience, I was the same. Perfect, high-achiever at school, had friends, although always tended to have just one or two best friends and could be awkward socially....but I tried very hard to fit in. It all fell apart at home and my behaviour there was often VERY different. I don't think any of my teachers would have believed my mum if she had tried to explain how things could be at home.

You have already described some social/friendship struggles in addition to the sleep difficulties and anxiety. Any sensory issues (struggles with clothing textures, certain noises, preference for bland food of a certain texture etc.?) Any other issues with diet? Struggles with change and transition ( possibly relevant to bedtime transition)? Tendency to take things literally/ fixate on small details (can come across as anxiety), need to over-plan / prepare for things (can also look like anxiety), fixations or strong interests (although this can also be missed in girls if it is e.g. a fixation on drawing or a certain TV series, or watching the same music video over and over.....) Girls often tend to have more "socially acceptable" intense interests rather than the stereotypical trains! Repetitive behaviours, even things like nail biting or hair twirling? It can be subtle as we do realise that people notice and will tease us! Any tendencies to "come across as rude" without meaning to or maybe to be direct/blunt, or blurt things out that other children her age maybe wouldn't? Taking things literally and querying things can also come across as being rude/cheeky or a "smart Alec" or argumentative at times. Tendency to "black and white thinking"? Although all of it can present in such a massive variety of ways.... these are only examples and I certainly wouldn't expect anyone to relate to all I have said! Have a look at the concept of the autistic spectrum as a colour wheel, which is a very good visual representation of how different autistic people can struggle in different areas, while all being autistic.

Please please do have a look at the Autistic Girls' Network link that was shared above..... it is a great resource and if I correctly have a downloadable document called something like "Keeping it all inside" (?) which is incredibly informative....hopefully my memory is accurate here!

Also have a look at the AQ50 screening tool online. I had to do this (well, a paper version of the same questions) as part of my own assessment, and it will give you a score and interpretation....although bear in mind that some questions can be harder to answer (or even to work out what they mean in terms of real life) and that masking can affect results.... e.g. if someone is pretending to be very sociable and to love spending time with others, but actually finds it hard/draining and only tries very hard to fit in.

Don't be put off by outdated stereotypes about no imagination, no empathy etc. either, or eye contact! My diagnosed child and both have great imagination and he makes good eye contact (I try but hate it). What was picked up on in our assessments was struggles with SOCIAL imagination specifically (who knew that was even a thing!) Autistic people can also over-empathise, or show empathy in a different way from neurotypical people. Again, please please do have a look at the link that was shared earlier, as it will explain things much better than my ramblings!

And please excuse the autistic info-dumping there!! :-D

My DD is autistic. Sleep has always been an issue. At this age she would only sleep in my bed. She'd fall asleep with me lying next to her. Sometimes I'd then get up and have some time downstairs, sometimes I'd fall asleep too.

It is likely she is masking at school. My DD did too. Basically the wheels came off in year 10 when she suffered autistic burnout. It's been a stressful roller coaster ever since.

Start the ASD assessment process now. It takes a long time but I'd say getting a diagnosis before Secondary school is very important.

Have you spoke to her about it, and suggested going to sleep by herself etc could it just be habit? Perhaps by just gently encouraging it and saying if you wake up and I'm moving just go back to sleep. Might not work straight away but over time maybe . My daughter was like this when she transitioned to secondary school and it's tiring and you just want them to have confidence don't you x

God I’m so sorry, that sounds unbelievably tough.

it sounds like you’ve sought the right help and are doing all that you can. I suspect your instinct that she’s neurodivergent is correct, even if she didn’t meet the criteria for ADHD. ADHD and autism are criminally underdiagnosed in girls because they don’t always present in the conventionally understood ways.

I’m sure you’ve tried it all but would something like a tonie box help at nights so she can listen to stories while she drops off? The distraction might help her.

have you tried leaving and coming back? We did this with my son (much younger though so might not be of use to you). We would leave him alone and come back literally within 90 seconds, then gradually extended it to 2 minutes, five minutes, etc. it helped him trust that we would be back when we said we would, and he eventually got to the point where he can now fall asleep on his own.

you sound like a brilliant mum doing a great job in very, very difficult circumstances

I don’t have any advice OP but just wanted to say you sound like a wonder mum who is doing all you can and it sounds so tough!

I know it’s not ideal but would she stay in her room and fall asleep watching TV?? It would at least give you a break if it worked and you’ll be more rested for her?

She sounds very much like my eldest who has ASD/ADHD. His brother with ASD/GDD is also very difficult to get to sleep but at the moment he’s not wandering in and out all night (he’s more likely to be trashing his room if not tired enough though). No child is asleep before 10pm, my eldest goes to bed then gets up and into mine. Then needs half waking to take back to his own as he’s too big to carry these days. Someone is usually awake at 2am then the day starts again at 5.30am. It’s exhausting, never ending, monotonous and we all crack at times. I do get one night to myself a week to recharge - more during holidays and it’s just about all that keeps me sane sometimes.

Does she read? I let my eldest read for however long he wants, no screens in bed as this causes far too much overstimulation. He also has small lego bits if he’s feeling fiddly. More squishmallows than bed space for comfort 🤣. I’ve also put a thick duvet under the bedsheets as I find the kids sleep better the softer their beds.

Does she sleep through when in your bed? Could you maybe set her up a smaller floor bed or camp bed in your room if being in there helps her feel more comfortable?

Rather than sitting outside her door getting more and more frustrated could you use the time? DS1 will only go to sleep if I am upstairs with him, but we've now got to the point where I can set up the ironing board on the landing and get that done or folding laundry outside his room, or do a yoga session there while he lays in bed, as long as he can see me he's happy to doze. Sometimes now I can go and have a bath a long as I leave the door open, it started small - 'mummy is still here I'm just popping for a wee, can you time how long it takes me?' 'Oh, the cat just needs some food I'll be back in less than 60 seconds' but always coming back, every few weeks extending that time a little longer. It means I'm doing the things I need to do as at one point I found resentment building knowing I had other things to do and having to sit waiting for him.

Could you let her sleep in your bed with you? I have resorted to this with my DD as I couldn't take lying in or next to her tiny bed and having to see her at night. I lie down with her and sneak out when she is asleep, them come back when it is my bedtime. I assume that it will stop at adolescence at the very latest! From your descriptions I think your DD sounds very insecure and my instinct is that pushing her away or trying to get her to 'grow up' might be counterproductive. It does sound hard though.

Also I lie in bed listening to podcasts or audiobooks while she goes to sleep, I actually find it quite a nice relaxing time. I don't know if you could try this.

Op on a practical note could you move her bed in with you, on the condition, she has to not wake you between set times, at 9 she should be able to understand this?
Maybe she has to be quiet (reading, lego whatever she likes to do) in the living room from dinner time until say 9pm, then you both go to bed.
but she is only allowed in your room on the above condition ie that she is silent if not asleep. It must be very hard.

See a Psychologist. Attachment issues sound likely.

Have you tried brown noise at night? My dd has asd and it helps her, I hace adhd and helps me to sleep too

DS (8) is on the waiting list for an autism assessment. He has a bedtime of 7.30, but never goes to sleep then. He is an obsessive reader, and I let him read as much as he wants (he has a night light). I hear him getting up and down to use the loo (Although he's not dry at night yet 🙄) until gone 10 sometimes, but I've always made it clear he's on his own after 7.30. Saying that, he did come into my room at 10.30 last night saying he couldn't stop intrusive thoughts, and I encouraged him to visualise a glowing white sphere inside his head, gradually growing bigger and pushing all the thoughts out to leave a calm emptiness- something I find helpful myself.

I'm autistic myself and have always read myself to sleep. You also have needs, and I'd encourage you to help your daughter to find a way to self soothe, rather than relying on you.

So she could be masking at school then, and when she gets home this is when it all falls apart. However I'd take what a pp said about an attachment disorder into consideration. Obviously all children with ASD present differently, hence it being a spectrum, but social communication issues are generally quite an issue, or they are in our case at least. Either way clearly you both need some support as it's a really challenging situation to be in.

@fedupenough how does she sleep at her dad's? How does she behave around him? Are they close and does she follow him around etc too? Could she spent more time there? (I also hate to ask this one but is it a safe environment? Is there any chance at all of abuse? - I'm sorry I hate to ask but it does potentially explain some of this behaviour)

As an older woman, I can tell you that my experience of motherhood was just like yours. My daughter is now an adult, and, despite superficially being happy and successful, is still anxious and finds social interaction exhausting. She has all the signs of adult female autism and is currently seeking to have this confirmed. Wish we had known earlier. In the mid 80s there was no such thing as neurodivergence.

This 100%.
We have a family bedroom. Huge bed arrangement. I go to bed with my autistic 9 year old and watch stuff on my phone. Makes things so much smoother and less stressful. We all sleep well now.

You have the patience of a saint. That is highly frustrating. My ds was a bit like this. Oddly enough if he was promised something he liked the next day, then he could easily put himself to bed. So it just seemed like it was a habit for him. I don't blame you for telling her to F off, it sounds suffocating.

Hi everyone thanks so much for all your replies!

To try and answer a few of the questions we have tried the following:

I brought her a small double bed when she was 2 so that I could sleep on it as well in an attempt to keep her in her own bedroom rather than mine so that she was 'used to' her room. We have since moved and been in our current place 5 years - still with that bed but a new full size double coming this weekend!
I would sit with her until she fell asleep (pre melatonin) and would escape for an hour or 2 after sitting there for at least an hour and a half, but she'd always wake by the time I went to bed.

Since the melatonin I sit in the hallway but still can't get away completely.

I've done jobs before like ironing, folding washing etc and moving back and forth but ultimately she won't sleep until she knows I'm there and not moving about.

We've tried listening to Audible however she sees this as an activity and listens and don't sleep!
She would sit and draw/ colour but she would never actually stop and go to bed - she would be out to find me.

She's not allowed any tech for an hour before bed as per her tablets, so I make sure everything is off by 7pm, she has her tablets then a shower and she reads a book while I have a shower then we read together. Then I sit in the hallway 🙈🙈

I must say that last night was a particularly bad episode and she didn't sleep until I gave up at midnight ish and let her in my bed.
Usually she will sleep but I'm still stuck in the hallway for god knows how long.

On her last set of notes from the paediatrician (November) it mentions a sleep study at St Mary's or Evelina if no improvement. Her next appointment is early February so i am going to push for this.

I had a look at the scoring for Autism that someone sent and answered the questions. She scores 22 I believe 29 is the bench mark for diagnosis so possibly a mild form if that is a thing?

Things she has traits for is - clothing - just this morning changed her school T-shirt for another as it was 'itchy'.
Takes her at least 5mins sometimes 10 to put shoes on as she pulls them so bloody tight 🙈

Loves to draw but it's usually the same thing over and over
Likes to watch certain TV shows over and over too - I've managed to get her to watch something different over Xmas on iPlayer.

Bites her nails to death!

I noticed one trait was hair twiddling - I do this occasionally when bored lol!

Her dad tells me she don't play him up much at his - although there her younger sister sleeps in the same room and she can see him in the living room from the bedroom (very square shaped flat, whereas mine is long)
I have told her before I'll send her to his if she carries on and she's like nooooooo he will tell me off so bad - she's always responded better to men though. My brother has been round to babysit a few times (although not recent years ) and she doesn't play him up much.

I don't want to share a bed with her as she's 4ft 10ins and is like an octopus on cocaine - don't stop moving about all night - I've had arms crashed into my face more than once!
I want to make progress as we've been stuck like this since birth really - she'll be 10 in June and I can't believe 10 years later I'm still sitting in the hallway like a prisoner - something has to change!

Someone also mentioned DD staying with her dad more -

He's literally never helped out, does his bit at the weekends and that's it.
His current girlfriend is a school teacher at a private school and when I asked him for help in previous holidays he's gone oh T is off she will have her. But DD actually said she wants to see Dad so I've told him that.
His response is he is self employed so has to work (his job is sort of seasonal and weather dependent too at times) but even when he was employed he didn't help then unless i absolutely forced him too.
His excuse will be he leaves by 6:30/7am and not back till 5ish. Cuz ya know, it's apparently my department to work around the child that he co created.

For context - he has another child age 3 with another person I'll call G and now having another baby due end of Jan with T.

Which may contribute to why DD kicked off last night but it's not her first rodeo and has shown very little interest in the baby this time (was more excited last time but probably remembers baby crying etc)