It's like having a toddler. She is nearly 10.

[Cagliostro]

I really, really am beyond the end of my tether with it.

Waiting for another call from specialist HVs but all they have done so far is the usual routine, bath, warm milk and stuff that we have been doing for years. She is basically caffeine free, no screens anywhere near bedtime, plenty of exercise and fresh air, always. Reward charts or taking privileges away, nothing has worked.

She is being seen at the social communication clinic this month. I am pretty sure she has ASD but not sure what they will say - she is very typical of girls on the spectrum (I was one too), astoundingly anxious but keeps it all in. Paediatrician last time said she was interested in her attention levels as well, not sure if she was hinting at looking into ADHD type things.

We were getting somewhere. Finally. I was sitting outside her room and she was actually sleeping, maybe 10-11pm she'd fall asleep but it was an improvement. Then she started having issues with a 'friend' who has been bullying her. We are sorting that but DD has regressed hugely in every way. Sensory issues, anger, anxiety, paranoia, even little clues to (what I think is) ASD like taking things more literally than usual.

And the worst thing to suffer is sleep. She is back to non stop crying and screaming in the evenings, and the worst bit, what I call the 'deadweight'. It is like she becomes paralysed by the fear of going to bed. She 'cannot move'. It's not stubbornness. She is terrified. She screams that she doesn't want us to carry her to bed but I don't know what other option there is. I keep telling her she is in charge of her body and she can tell it to move but she says it's her bully's fault, or her brain's fault for making her scared.

She gets in a rage when she is the last one awake. DH is often on late shifts and I have various illnesses including CFS, I physically cannot stay awake sometimes. I really can't cope anymore. She was upset that I was tired and unwell the last couple of days and once again I ended up saying to her that it's because of her behaviour at bedtime that I am even more tired than usual. I hate myself for saying it. She was so upset and guilty. I just don't know where to go from here beyond running away. She is so unhappy :(

I don't even know why I'm posting TBH as I just can't see any solution anymore

Could she share a room with u for a while?

DS has ADHD, sound similar sometimes. Last night he was calling to me every ten minutes to make sure I was a wake and he wasn't the 'last to be awake'. Honestly it's torture being woken just as you're dropping off repeatedly. I'm in bed now waiting on him to go quiet so I can go to sleep.

Get some help on the sleep if you can. DS has melatonin and I honestly don't knows hatwed do without it.

There is an app developed by the Evelina children's hospital at St Thomas' called 'kids sleep Dr'. It's a really easy way to keep a diary of when they go to bed, settle, sleep and how long the take, and also what wakes them (nightmares, etc). You can then email your doctor a database of all the info.

This is really useful because if you do get to see a sleep consultant at all they send you off to write a sleep diary for two weeks - so if you go with a diary already you're ahead.

DS has ADHD and bad sleep makes it worse, and vice versa: if he's worried at all he won't go to sleep.

My dd struggles to sleep at aged 8 and gets very anxious about it. What's worked for the last couple of nights has been lying down with her and listening to a bedtime meditation story from you tube.
She also has an eye mask as she's scared of having the lights off (sounds ridiculous but she prefers it that way so whatever!)

also had success in the past with that 'rabbit who wanted to go to sleep' book. Probably a bit young for your dd but she might appreciate a bit of babying.

Sometimes I let her settle in our bed straight away. 8 times out of 10 she ends up there at some point in the night anyway.

Thanks all. She has ended up in our bed tonight - worse than usual, she was still screaming at DH, shouting that she wanted to get out of bed etc. So, so angry and inconsolable. :(

I worry about just sending her to our room all the time. I am still clinging to the hope that this regression will be shortlived (although rapidly losing that hope). Also to massively complicate things we have DC3 due later this year. She is super excited about that BTW, in fact before things kicked off with this bullying she would spend bedtime talking about her new sibling, and she insists she wants the baby in her room with her. :) But it does make me worry that we can't have her in our bed then.

Counting down the days until her clinic appt - although from friends' experiences it won't actually lead to much help anyway. Not sure what their policy on melatonin is.

It's just frustrating as I really thought we had cracked it. Well, we HAD. We started the sitting by her bedroom door and it helped so much. We added Piriton for 2 weeks on GP recommendation and that helped, we then tailed off as advised and it was fine. It even got to the stage where I didn't actually need to sit outside her room for so long, or even at all some nights. She would go to bed.

Then all this shit with her 'friend' came to a head and it's totally, completely changed her. She is a nervous wreck again. Thankfully it's a situation where we can and will stop seeing them (not like being in the same school class etc) but she is still obsessing over everything she has said and the fact we might bump into them.

Poor you and poor her. I hope you got some sleep and you get some answers/help from the appointment.
She does sound similar to dd. I keep flirting with the idea of asd too.
I wonder if, although excited she's worried about the impact of the baby?

Also, I wouldn't feel too guilty about explaining that you feel ill because of the lack of sleep.

Have any of the professionals involved suggested melatonin yet? Can only be prescribed by a Community Paeadiatrician/Paediatrician as far as I know (i.e. Not even GP can) so if not, may be worth making a separate appointment to your other consults,with your GP and ask them to refer to Paediatrician re sleep.
It's not a miracle cure by any means, but it can really help. My DD 11 has ASD/HFA and basically didn't sleep properly until aged 6. Melatonin was prescribed then on the run up to assessment as paediatrician felt she had a 'significant sleep disorder' (which was later described by CAMHS as being distinct to her ASD). It took some fiddling with timing and dosage but did start to produce a more normal sleep pattern but by bit. She sleeps normally now.
for you and your girl, I know how utterly grim it is.

Thank you! No, nobody's mentioned melatonin yet in a professional sense, not sure if that would change if she is diagnosed. Pretty certain she will be discharged anyway going by friends' experiences, apart from specialist health visitors for sleep. There's just no resources or funding here :(

I was also quite wary of mentioning melatonin upfront TBH. There's been so much hype over it lately and I am worried they will think we are just after the meds iyswim.

There is no shame in getting medication if your child needs it. Your obviously doing everything else you can. Could you have alternative nights in her room with her for now? So you each get some sleep.

Don't be afraid to ask about it. The kind of sleep difficulties you describe are beyond the usual range. And you have tried the standard sleep behavioural techniques to no avail, plus are pursuing diagnosis. I think you will by no means come across as someone who 'just wants meds'
Before meds and diagnosis, at this point of my own particular tether, I decided to do anything that got all of us the most/any amount of sleep, no matter how unconventional or how 'bad sleep habit'-y. In retrospect I still wish I'd done that earlier, but we live and learn....
By the time our DD2 came along, I worried about how any of us would sleep and whether a crying baby would disrupt DD1s sleep pattern again...in fact, I almost couldn't contemplate having another baby for that reason...but to be honest, that mantra of 'do what it takes to get the most sleep for the most people' really helped again and when the occasion has demanded it, all four of us have co-slept (albeit in a super king size bed with full-size cot sidecar so not totally a hardship).
By the way, it's by no means the same as what you describe, and was never as bad even at her worst, but the more overtired DD used to get (and it took nothing as she was chronically sleep deprived from birth) in the evenings, the harder and harder it was to get her to move. She still has traces of this now, puts off bed too long, then stress hormones from the overtiredness kick in and she will start 'moo-ing' (an odd noise she makes when heading to meltdown) and usually by that point, storm angrily off to bed. So it's mild now in comparison, but it's a tiny reminder of the bad old days.
Incidentally, I was very dubious about melatonin initially, did some research and settled on 3-day cycles, which allowed her own production of melatonin/sleep hormones to still be produced. So it didn't end up being a long-term heavy duty usage.
I had similar difficulties myself as a child (and yes am probably on spectrum) and then again as an adult, triggered by the years of sleep dep from DD1 but something I find makes the absolute world of difference to myself is supplementing with Vit D. Literally if I don't take it, after a couple of days I will be awake two, three hours a night.
So might be worth looking at if you are not already.
Sorry that was a bit of an essay, but maybe there'll be something there that will help.

Thanks so much

Happy to report we had a better night. We had a long chat about what's going on - which we often end up doing but this was more positive somehow. She did start getting stressed (and yes she makes an unusual noise at those times too) but thankfully she got into bed, I lay on cushions outside her room. She felt bad and said "but it'll make you tired" and I replied (nicely) "but it's much less tiring than sitting here on the sofa while you are refusing to go upstairs" - that seemed to help.

Really interesting about vitamin D, hers have run out so I'll get more ASAP. I am on them anyway because of baby.

It really, really helps to hear that it's beyond a normal range. I only have DS (7) to compare it to - also about to be assessed for ASD, more classically 'low functioning' and obvious with stimming/echolalia etc, and zero sleep problems or anxiety!

But when we went to a sleep workshop with the HVs recently (that was the first stage before they agree to any individual help) they just didn't seem to get how bad it was. They were saying things to the group like make sure you don't let them have any cola type stuff after 5pm, I said errr actually we have to basically ban it altogether and if she does have some it's a sip no later than 1pm! They were shocked - but she really is that sensitive to it. Similar with screen time, they suggested limits that are far more lax than what we have had to impose. I feel so mean sometimes but when we've relaxed the rules it makes things hugely worse.

Thank you so much re melatonin. I am happy to try it, it's quite likely she is deficient in it and they will agree with that if she's diagnosed, as it is common in people with ASD to lack it.

I have asked her to have a really good think about what stops her sleeping - at the moment the answer is just "X" (the non-friend) but I am trying to get her to articulate what it feels like in her body/brain when she feels she can't move up the stairs etc. As the specialists will want to know.

If you're anywhere near London pm me for a recommendation. Otherwise sending sympathy and hope you can turn a corner soon

That's good to hear, glad you are having some positives.
I've found with my DD that is she often completely unable to link mind/body sensations and describe them - she has sensory issues and dyspraxia too which impact here. Even of something she has been acutely moaning about a few weeks earlier, if you say 'well, is it like X that was really bothering you for ages a few weeks ago?' The answer is 'dunno.' Despite it having been a major issue.
So she is often unable to describe things like that which are really impacting, despite being highly sensitive, have amazing vocabulary and strong imagination in certain respects.
So I wouldn't worry too much if you can't get much out of her - any specialist worth their salt will know that's a very common indicator is itself.
I spent so long trying to figure out what DD used to describe as 'oily teeth' - it really bugged her. I could never work it out and neither can she. Her senses are definitely wired differently, I could bore you indefinitely with examples!

She sounds a lot like me as a child. My mum says i slept badly from the word go but I remember as I got older I was absolutely petrified of going to sleep. Well not even that really. I got that worked up about potentially being the last one awake that it would make me dread bed and I would be up and down all night crying and checking my parents weren't asleep. Which of course they weren't as I had woken them......
I remember mum having the usual crap told to her about caffeine etc. Doc even told me to visualise poppys as it would make me sleepy. Twat.
You sound amazing OP she knows you're there for her

Re-Melatonin. I am sure you have done your research but it really is important for the room to be dark for the melatonin to work.

I have 2 DS with Aspergers who have both been prescribed Melatonin. Black out blinds worked really well. My middle DS had to have a slow release preparation otherwise he would wake after a few hours.

Another thing that helped both my DS were heavy quilts and blankets (essentially like a weighted blanket which costs a packet). The deep pressure it gives is well known therapeutically to calm fractious and sensory overloaded children (if they like to be touched this way).

So is being wrapped in a sheet/blanket like a 'burrito'. The OT at my DS's school regularly did this to calm him when he was overwrought. The eldest also had a bed tent. (Ikea) which helped cut out a lot of sensory information.

We also found that a protracted bedtime routine helped - we started early and it took around two hours. This included lowering lights, 'quiet' tv or reading, bath and story time. Then kids meditation cd, natural soundscapes or classical music.

We also took the pressure off going to sleep, telling them that they just had to rest and relax. This usually worked.

The more 'overloaded' sensory wise the DS were, the longer it would take them to go to sleep, so I would think about minimising auditory/visual/physical stimulation for a couple of hours before bed.

There are lots of solutions but it's a bit like being a detective. An sensory assessment would help. This can be carried out by your local paediatric OT clinic (request from CAHMS).

for you OP. You will get there. My two are teens now but I can well remember the bone grinding tiredness whilst we worked it all out.

Hi again all. Really grateful for the advice! And no I had never heard that about needing darkness for melatonin so I will remember that if we are prescribed it, thank you!

Had the phonecall from the HV and that was good, she was really kind and sympathetic about the regression and the reasons behind it. She did make lots of suggestions but they are all things we have tried already sadly.

We agreed to wait and see what happens at the assessment (tomorrow! ) as we will presumably be discussing sleep then, and a diagnosis one way or the other may change how they approach things I guess. So, just have to get through the appointment now.

Had the odd good night but mostly awful. We are definitely making progress with the bullying issue, she is calmer by day, but even when we've talked things through the second she actually needs to sleep it all goes very wrong!

Just popping in to say good luck for tomorrow. Hope things go the way you want them to.

Thanks :) it is done now, the questionnaire took 2.5hrs (when the whole thing including feedback was supposed to take 2) so we've got no answer yet. They will discuss and then when DS has his assessment later this month - which is expected to be much more straightforward - they will feed back on both at once.

She said she wasn't sure what to think yet whereas normally she would have an idea whether it's a yes or no. So I guess the score will be borderline but at least she hasn't said she thinks it is really low, and she also indicated that it would simply mean further investigations are required rather than telling us to bugger off. I have no idea how the ADOS bit went as the SLT took DD into a separate room.

The other thing she said was that DD needs assessing by an EdPsych. She noticed a lot of indicators towards a learning disability.

I wanted to stop by and say that I was thinking of you today. It's emotionally draining but at least you can feel positive that the process has begun.

I hope you get the answers you need and that you can all begin to unravel what is going on as soon as possible.

Hi, I realised that I totally forgot to update!

DD was diagnosed with autism spectrum disorder. Amazingly she scored really high on the ADOS! I burst into tears at that point - just the sheer relief that they saw it you know? But also I really thought that DD would have bluffed her way through but the SLT said that the little bit of pressure put on her was enough for the mask to slip. Which is a relief in that she's now diagnosed but also sad as it shows she struggles more than I thought. DS was diagnosed too by the way but I didn't react in the same way as I was totally expecting it and he's much happier generally.

Anyway sleep is a little better at the moment. The bully issue has in a round about way sorted itself out as her mum turned just as nasty and has also defriended all of us who have ever had an issue with her DD bullying our kids (there are loads of us who have been victims, DD just bore the brunt as her 'best friend'). So DD hasn't been in a situation where this girl is. She switched one of her clubs and is so much happier (new club is actually better for coaching quality too so she's learning more/increasing confidence). There are still worries about seeing this girl, it is unavoidable to some extent, but they don't have to actually do anything together IYSWIM.

That's had a good effect on her sleep as the further we've got from seeing this girl the less hold she's had on DD, there have been bad nights but overall it's improving and although it's still very late nights it has not been full of screaming etc.

Also the DCs have not been discharged yet - the paediatrician is convinced that both of them have comorbid conditions and will be seeing them again to get the ball rolling.

We had a visit from the specialist health visitor today who was mainly talking about what's available (charities etc, as expected NHS help is non existent due to funding). But we also chatted about DD's sleep and she's happy that we have tried everything possible ourselves and she is going to ask the paediatrician to prescribe melatonin. Very happy about that, it has to be worth a try!