Sleep deprivation really debilitating, can I have a listening ear?

[lookforthespace]

DS is autistic. He is up by 3am latest every morning. He doesn't fall asleep before midnight.

Long story short, nobody is interested in helping us. It's just horrendous. We are going crazy as a family.

I've reached out to SEND team at the council, health visitor, nursery manager. Nobody can suggest anything. GP has already referred to sleep clinic (we've done it all before), there's a huge waiting list.

What happened is we moved council areas and his special school place was removed because they originally accepted him without any EHCP in place. I did fight tooth and nail for it to be given provisionally until they process the EHCP but I didn't win. However their own has now been processed and it's just a case of waiting for it to come through in January/Feb time. Then DD was born.

Are people really expected to survive like this? I can hardly function. We have a vulnerable newborn in NICU. I drive an hour each way to see her. I'm frightened for her, worried about DS. Tired. So, so tired.

We are arguing like cat and dog. H is working 5 days a week. I'm caring for DS. I send him to the local pre school for a few hours, 3 days a week. They can't cope with him, I keep getting told 'we've had a few incidents today' at the school gates and they're always stories of how DS has harmed someone

DS is no longer connecting with me. He's very cross I think. He can't say a single word though so I've no idea what he thinks. All I know is he's now ALL for his dad. Understandable. He probably thinks I've just fucked off (I was unwell to great worry after DD was born and in hospital for a while).

Nobody cares. Nobody. How can anyone with concern for my child's welfare think this is doable? I can't go on. I'm so tired.

Obviously I WILL go on and I love DS beyond measure. But it's so horrific a set up.

Is there anything else I can do? Can anyone offer any advice? I'm torn. I'll take any suggestions, even if they're already tried

Didn’t want to read and run, sounds horrific, you absolutely need help. Are social services not able to give some restbite. I know all services are stretched beyond, but if this continues you’re going to get unwell. Can dh take some leave to allow you both some sleep time, not a long term solution I know.

When my son was a baby we did things in shifts. I went to bed from say 7 till 12. And then my husband would then sleep from 12 till 6 ish.
Meant we all got some sleep.

How are you doing things in shifts though if the child is awake and the other parent isn't home?

Could you afford a night nanny just occasionally? Could your last special school recommend someone?
I send sympathies as lack of sleep is the worst.
I suppose the dr has already given melotonin? Or could this be purchased? I’m sure you’ve already tried anyway.
Any family member who would do a night shift for you? Just one time so you could sleep for a block of hours?
How does your son manage with so little sleep himself? I don’t mean to be rude- I’m just genuinely curious.

How is he at night? Whilst not asleep is he calm? I know it’s no where near the same but when I had a sleep refusing small child and had caring responsibilities for a parent and was pregnant some times I had to sleep so badly. I made their room safe. I took out anything they could harm themselves on ( I know, easier with a small kid) put out stuff they liked but was safe, put on a movie ( tv on wall out of reach) stair gated us both in and dozed on the bed. Not great sleep- but it helped a little. Is there anything he likes that would occupy him? A tablet locked on to a show or something?

@Paperyfish No I definitely couldn't afford a night nanny; but I think you'd be hard pressed to find one willing to take on such additional needs?

Family won't help us in that way. They have tried and couldn't cope.

We are waiting for the sleep clinic to see us, who will then refer to paediatrician for melatonin. But we have tried it off the web... it never worked for us. Sent him to sleep lovely and then he was up even earlier than 3am

There are nights where he doesn't sleep at all

Honestly, you ask how he survives on such little sleep and I can't say how. He is like a machine, a manic one! Doesn't stop from the moment he opens the eyes to when he closes them. He doesn't ever get tired

He just crashes, eventually, and within minutes he's asleep

I doubt nobody cares. In all honesty, what are you expecting the council SEN team or the nursery manager to do about his sleep?

Help with sleep comes through your GP or community Paeds. Are you implementing all the strategies from the sleep clinic? Melatonin? No one will have a magic answer unfortunately.

@FrownedUpon I know that. It's just emotive language because I was almost in tears writing the post. I'm just desperate

I tried melatonin we bought and it didn't work. But as I say, nothing will get done sleep wise until he's been seen at sleep clinic ( a nursing team who can't prescribe it anyway), who will then pass him onto paediatrician with the view of trialing melatonin

I'd love to try a properly prescribed one and see if it works. But I've pleaded and they're insisting on waiting for his appointment with the sleep clinic first, in mid January

Additionally, a GP can't prescribe it. A paediatrician has to

I’m so sorry you are going through all this. My two year old has never slept through and I have insomnia too (anxiety related), so I thought I had it tough but your situation sounds extremely different , I can’t imagine what it’s like. Fwiw I care, and I hope you get some help soon ❤️

Extremely difficult*

@Fet2021duejuly2022 thank you

Sorry you're going through a rough time. No/little sleep is the absolute pits. No wonder it has been used as a form of torture before (I think I read that somewhere anyway)

I hope your situation improves soon

Thanks, I’m pregnant too so I’m just hoping things improve soon so I get a bit of sleep before the next one arrives!

I keep trying to tell myself that this time will pass soon.

How’s your baby in hospital? What a lot you have to deal with xx

You can't go on.
I've been there - I had a nervous breakdown and we got divorced as it drove us apart.
Get a night nanny. I would honestly go into debt through a loan to sort it. Or extend the mortgage.
It's that important.
Just for half the week will help you so much. But it will take a month or so to feel the benefits.
Are you claiming DLA? Use it towards this.
Noone is going to offer respite. They should I agree but it's not going to happen. Not from the government and not from friends/family.
So book it yourselves without guilt.
Your DS might not cope well with a strange at first. But the benefit to him of having happier rested parents will outweigh this.
It would cost you c£5k to divorce minimum so you can justify it that way.

All I can think of is asking GP to prescribe melatonin and DH talking to his employer and asking for leave / carers leave / compassionate leave etc whatever his employer can do to help for a month or so especially while you have a vulnerable newborn.

I have an autistic daughter and another child and DHs employer has helped us when we’ve been on our knees.

Sending sympathy.

@Fet2021duejuly2022

Thanks, I’m pregnant too so I’m just hoping things improve soon so I get a bit of sleep before the next one arrives!

I keep trying to tell myself that this time will pass soon.

How’s your baby in hospital? What a lot you have to deal with xx

Ooo when are you due? I was due Feb but had her in October She's a micro prem, born at 1lb 4oz

Does your little one like nursery? X

I've been where you are, OP, three years ago, and I'm still recovering from it.

We moved from London to Kent and had to redo everything with regards to SEN support.

In the end we had to submit tribunal papers to get LA to name our preferred specialist school, and obviously I had to do all the research and work around that while also dealing with a newborn. It didn't help that autistic DC also had chronic tonsillitis that year culminating in a tonsillectomy. He went through four nurseries. I nearly lost my mind.

Things have settled now, though my brain still jumps to fight or flight very quickly, my limbic system is shot to shit.

If you can get DP on board with some of the admin it would help immeasurably, my own DP just hid amongst alcohol and work. He's off the booze now and very guilty about the weight he left me to carry.

@lookforthespace I’m due in July so still in the throws of (all day, all night) morning sickness.

Yes she loves nursery, although every time she goes she catches a new illness (it was hand, foot and mouth last week 😅)

Bless her, she’s so tiny, I hope she’s doing well ❤️

I’m not sure if you want to consider this while you’re waiting to be seen but I buy Melatonin ‘over the counter’ from Biovea. Takes a while to get here but arrives fine and helps my two

www.biovea.com/uk/productlist/categorydispatch?CID=22599&deptID=1&FiltersObject=%7B%22SortValue%22:%7B%7D,%22PageSize%22:%2224%22,%22CompareProducts%22:%5B%5D,%22Brands%22:%7B%7D,%22FormValues%22:%7B%7D,%22PriceRanges%22:%7B%7D,%22Categories%22:%5B%5D,%22objects%22:%5B%5D%7D

Sorry, please ignore… I just reread your post about having tried it before.

I have nothing helpful to say but massive sympathy. You, poor poor things! I suffered pretty bad sleep deprivation when my daughter was a baby (and she's still not a great sleeper at four years old) but this sounds like an absolute nightmare! I really hope you can find something to help your situation.