Sleep advice for exhausted single parent of autistic child - desperate now

[Listinggracefully]

DD is 12, she has an ASC diagnosis. I am convinced she has PDA and ADHD but no diagnosis as yet (it is on the list of things I need to arrange). She has never slept well. I can't think of a single time in her life where she has just gone to bed and self settled. I estimate that she sleeps with me 40-50% of the time even now. She has Misophonia and so every time I so much as breath she shouts at me and wakes me up.

She has missed all of Yr 7 because of EBSA and won't go to her DF's house for more than a couple of hours a week. She is disregulated both physically and emotionally.

I have lowered demands but it just means that she is now essentially nocturnal. She has recently had a nightmare which has made her scared all the time, so she is now calling for me all through the night.

I am a single parent and am self employed. I also have an older DD who is suffering because DD2 loves to provoke her, and I simply don't have the time to give to DD1 either.

I am also battling to get her looked at for Elhers Danlos, as she suffers a lot of pain in her knees and ankles, and has other symptoms which would fit.

I receive DLA which helps given my lack of capacity to work, and also pays for her counselling (although I need to find a new counsellor as she didn't like the last one and refused to go).

I'm utterly exhausted. I can't remember the last time I slept properly. I am recovering from agoraphobia which I have been struggling with for the last 18 months. My house is a mess, because she is like a whirlwind and has an obsession with sensory seeking through slime and cutting up squishies. I have school and the LA on my back because of her school attendance, so I am jumping through all the hoops I have to for that with Section 19 letters, referrals to various Neurodiversity Hubs and LA initiatives. Her father is taking me to court because she won't see him and obviously it's all my fault, because I'm a terrible person who want to keep the children all to myself (the irony is I would LOVE a fucking break for a couple of nights). I have people chasing me for work because I am behind. But mainly I have a child who is suffering badly and I do not have a clue how to help her.

If you have actually managed to read to the end; well done. Does anyone have any suggestions that might help particularly with the sleep? If you don't understand the complexity of ND parenting please can I kindly ask you not to respond, as it simply isn't the case of removing devices and enforcing strict boundaries. I have successfully parented one child that way, but this is an entirely different ballgame, and I really don't think I can take any more judgement.

Absolutely no judgement here. My DD 11 has similar problems. At the moment, her day/night rhythm is turned upside down most of the time - she is often up all might and falls asleep at around 8 am. She's never been a good sleeper but what really made it worse is when I tried to force it and followed common advice, like taking away devices and putting in "boundaries" - as you say, this works for neurotypical children but can make things much worse for others. So we don't have any demands around bedtime anymore.
What helps her settle (sometimes!): Lights full on (counter-intuitive, but she's afraid of the dark); brown or pink noise (brown noise might work well with misophonia); sensory input (back and foot massages, if she lets me); essential oil diffuser (bergamot, mandarin, vetiver); lavender pillow spray; very simple children's books (aimed at toddlers). She's just got a new mattress as well and that seems to have a positive effect.
Have you tried melatonin or other meds? I really hope you will find something that helps, it's such a draining situation.

Does DD take anything to help with sleep? I would look at a referral to a sleep clinic. Does she have her own bedroom or does she share?

Has DD had any help with the misophonia?

Has DD had an OT assessments including the sensory side of things?

Rather than a counsellor have you considered a clinical psychologist? Does DD need in-person sessions or would online work? If DD needs F2F sessions, if you want to post where you are someone may have suggestions. I appreciate you may not want to, though.

You mention s19 provision (where are you up to with that?) but you don’t mention an EHCP, has an EHCNA been requested?

You could consider requesting social care assessments. A carer’s assessment for you and an assessment of DD’s needs.

As well as DLA, are you receiving all other benefits you are eligible for?

For DD1, have a look at Sibs and your local young carers service.

Thank you for responding, it is shit but so good to know I’m not alone. You are so kind

She used have brown noise but just has a fan at the moment. I might try and go back to it. Supplements and lavender we have tried. I spent nearly £1000 on a new mattress a couple of months ago. I might try the lights on; at the moment we have a complex arrangement of lights on and off in order to provide just the right level.

I have referrals in for her left right and centre at the moment including rheumatology, CAHMS and nutrititionist, I’m sure my GP is going to think I’ve got munchausens by proxy 😂. I can ask about a sleep referral but we live in a rather isolated and under resourced part of the country.

she will only do face to face counselling, but I think I have found someone now.

S19 request was refused last week as apparently the school are amazing and doing so much, so it is my fault she’s not going in(obv I’m paraphrasing but that’s how it feels)

EHCP was refused. I haven’t sorted out an appeal yet.

im not eligible for any more benefits, but I’m not struggling too much financially fortunately as I am luckily mortgage free and have a reasonably well paid job (when I’m able to do it)

thanks for the suggestion re DD1 and a young carers group, she really does struggle and misses out on so much because of DD2 refusing

It doesn’t matter where in the country you live, you can request a referral out of area.

When was the EHCP refused? Don’t miss the deadline to appeal. Was it a refusal to assess or refusal to issue?

If the LA has refused s19 provision, you could look at a pre-action letter.