2 nights of no sleep at all

[CherryAndLimeMum]

Is it unreasonable to feel like a zombie and be almost unable to function after 2 nights with no sleep at all. I’m a single mum. My 9 year old DD (she’s autistic) often goes 2 nights without sleeping at all which means I can’t sleep either! DD usually goes 2 nights (and she won’t sleep or nap in the day either) without sleeping and then sleeps really well on the 3rd night and then goes another 2 nights without sleeping and so on and on. After the 2 nights of no sleep I often feel like a zombie and can barely function with the sleep deprivation, I still have to work in the day as well whilst DD is at school. This has gone on for years and I’ve tried so many things to help get her in to a better sleep routine but nothing works. She’s also already on the highest possible melatonin dose as the paediatrician won’t give her a higher dose. The sleep deprivation and exhaustion is killing me! AIBU to feel like this?

You feel like there must be a referral pathway, an answer, some level of support? Because this is extreme right? And it's inhumane to expect this of a mum, and you're right that it's inhumane but there is no pathway, there is noone swooping in to rescue parents in this situation. You go along, even when referred, we were under neurology and neuropsychology and still it took years to be prescribed melatonin (and for us it was life changing 100%) but if it didn't work and other meds didn't work and you're continuing to parent a child who is sleepless and dangerous unsupervised then you have no option. You get on with it because there isn't an option. You get up, you suffer through and you repeat. I remember mum friends complaining they were up through the night or busy for 12 hours 7-7.whej their child fell asleep or whatever and I was incredulous and also embarrassed because everyone inevitably thinks it's your fault.

Sorry, you've not said anything wrong at all but your imagined points of escalation don't exist,.you're expected to just buckle in and not become psychotic.

YANBU at all. Sleep deprivation is horrendous and I’ve been through it with babies and also with insomnia as a teen. It made me hallucinate and feel sick.

sorry to hear she won’t sleep.
im assuming you’ve tried these but adding here just in case

weighted items - blanket to help with sensory needs
audio books - to take her mind off the not sleeping
new sleep smells and special sleep teddy - to kick start a new routine.
checking her routine - could it be better to put her to bed later when her body shows sleep signals?
has she had her iron levels checked?
sleep foods such as tart cherries, bananas, oats. If you google sleep foods it will give you a list
do you know what type of melatonin - there are different types
if she’s been on it a while it may lose effect - may need to come off for a big and re-start.
ask for something else- like others have suggested. Antihistamines can be good or mirtazipine. Not sure on age limits.
when she can’t sleep, could you take her for a walk in the fresh air and then back inside for a warm milk and re start the routine. Constantly trying to get to sleep teaches the body not to. New associations develop. Maybe set a limit - if not asleep after 30 minutes - get her up into the light/fresh air for 10 mins and start again.
failing all that - respite, friends to babysit and making her room safe and use tech to keep an eye. Baby monitor and door sensors. Give her soft things she can throw safely to get that need met.

sorry you’re going through this and I really feel for you

I can't remember what service it is, might be OT? But there are certain beds that can sometimes be 'prescribed' that can help with this if it causes a risk to the child's safety. Has social services done any assessments on how to make your house safe for her? They can recommend certain equipment or changes to OT to enable safety. It's the same team that can 'prescribe' specialist pushchairs.
There is absolutely sod all support out there OP as you already know! The absolute slither that is possible you need to keep screaming for. The strain on your physical wellbeing alone will be significant as I'm sure you are already aware.
I really hope you manage to move forward in some way!

I’m also the parent of an autistic child who for the large part of their life kept me awake. I did become psychotic so I know all about it.

It does however, sound like the OP hasn’t gotten to the stage where all medications have failed. She’s tried the maximum dose of melatonin and for me, at this point, the next step would be another medication. Several have been recommended in this thread. They may not work, but it would be one of the next obvious steps to me.

OP, I feel you.

We’ve got a 10 year old who roams the house turning taps on, jumps off any surface he can find, and makes all the noise during the night.

It’s horrendous.

I do give him screen time in the middle of the night and I’m not sorry for doing so. If it’s the only thing that’ll get him to sit still for any length of time, and it’s 2am and we’ve been up for days - watch whatever you want, child.

It’s not my first port of call, but I make no apologies for arriving there.

Sleep specialists are zero help - they’ve given us a list of things to do, which we’ve already done, and then they too run out of options. He just doesn’t require sleep, and that’s basically it. Melatonin can (sometimes) get him to sleep, but it doesn’t keep him asleep any longer than 3 hours.

It’s debilitating, exhausting, and neverending. Give her the screen, get some rest even if it’s not proper sleep.

Is she in a special school?

I hear you, and have been in your shoes. Big hugs.
Are you in touch with local charities and support groups in your area? Respite care is life changing, if you haven’t already please look into this. Children can be cared for during the day or night or both. You should be eligible for funding for this.

Why do you need to know this?

GPs can issue repeat prescriptions of melatonin if it was initially prescribed by a consultant

I think there are lots of possible avenues for support.

GP is no use for sleep meds for a child. You need a Psychiatrist or Paedeatrician. GP or school will need to do referral depending upon local guidance. Might be via CAMHS or similar.

Social services disability team can do carer and child assessments. They are the route to respite care or other options like OT involvement for house changes.

How is she at school - does she get overstimulated,.understimulated? Is she getting enough exercise during the day? Is she anxious? This can all affect sleep.

Is ADHD a possibility? My AuDHD child was a horrendous sleeper. Melatonin no use but non stimulant meds have been literally life saving.

Can you call in sick and sleep when she’s at school? I think this would bd justified in this situation as you can’t safely drive. Longer term, have you explored different medications and treatments and asked for second opinions? And then, how about creating a safe room for you and her to sleep in, only soft stuff around, door locked and window secured? You can at least close your eyes for a bit and rest.

Oh and for work... can you drop your hours to get bit more sleep? If you get some more funding via social services this might reduce spend in other areas and so help you be able to reduce hours?

Have you checked you're claiming everything you are entitled to? I assume she's on high rate DLA?

I can’t answer for the OP but my profoundly autistic DS is similar with sleep, and I can’t sleep when he’s awake because a) he won’t stay in his bed on his own, b) he has verbal tics, so basically if he’s awake he is making noise and c) he is unsafe to be left unsupervised.

The GP absolutely didn’t take it seriously for me. Not the consultant. I was told that that’s just life with an autistic child.

Is your child an adult now? A friend forime has a 21 year old (she had kids young I had them old) who is autistic and was a non sleeper. The level of help available to her ompared to the help available since having my son is might and day. Her health visitor had her referred by the time her son was 2, he was diagnosed at 4, my son is almost 9 and despite lots of comorbidities still on a waiting list. Her son was accepted as not able for mainstream and given a place in a brilliant additional needs school from P1, there are 3 entirely non verbal autistic children in my children's mainstream school. My son would have qualified for a 1-1 support back when her son was small, now the children who have 1-1 support areainstreamed nom verbal and not toilet trained. The special schools were closed everyone's provision downgraded a level basically

A family member has a 22 here old child who is autistic and she was in mainstream with a 1-1 support so I'm basing this on having been around lots of parents then and seeing how their experience was. The situation now is so much worse in terms of availability of support.

Absolutely but the point pp was making is that if this child has melatonin op has already scaled beyond GP input

My DS11 does not sleep well (non verbal, severe learning disability). We use melatonin and Phenergen together and it has changed our lives. I would strongly suggest trying.

I have been to work on zero sleep, as a teacher, many times, as has my DH. We cannot sleep while he is awake - his behaviour would be too dangerous. Find it difficult to understand why people don’t get that but I suppose if you haven’t experienced it yourself.

Yes I agree with this.

Is it possible she has other undiagnosed conditions causing inability to sleep, ie adhd?

Also, have you looked at the timing of the melatonin so that you give it no later than 60 minutes before you want her asleep and pair that with wind-down strategies?

Can you afford a baby sitter or put her into after school club for as long as possible?
I assume you get pip so can you use this as a temporary measure?

You could then get a couple of hours sleep.

What work do you do?

I don’t think WFH is healthy but if you had a WFH evening job then you could sleep during the day when she’s at school at least.

Look up charities as they may be able to provide funding for things.

Huge sympathy because I know how hard this is. Can you change your work hours so you can work in the evening (even if it means having DD sat with you) so you can sleep in the day?
I can't really see another option. You can get in touch with children's disability services and see if they will offer you respite but it's highly unlikely they will. I have been on my knees crying and begging but they just tell me my DS doesn't qualify for respite.
You can try and get a babysitter to look after your DD for a few hours a night but that will be expensive as it's evening/night and you'll obviously want someone experienced in autism. Or get them to look after your DD while you work evenings.
I really think changing your hours if at all possible is the best course of action.

Does she have ehcp?
Do you have child with disabilities social worker?
Have you told gp for you ? Have you tried other medication ?( melatoninhelped my son get to sleep for few years then no longer worked)
Can you get a sleep study?

To be able to give relevant and specific advice, of course - or understand the situation better and that there is no advice that I could give.

This is an absolute stupid question. It’s not actually a question, it’s a judgment. As if it hadn’t occurred to OP that the father would be a solution, if that actually were the case.

This is a very similar situation to what my friend found herself in a few years ago with her autistic 7 yo. Her husband left as he couldn’t cope (then moved countries for work) and she struggled on for nearly a year on barely any sleep. She couldn’t stop work as she had a mortgage to pay and 2 other children.

She referred herself in to the CWD team and asked for a social worker, they did CAF assessment and at first gave her 3 hours per week carer hours. She ended up telling them that if they didn’t fund appropriate care, they would have to take him, because she couldn’t cope with the sleep deprivation any longer. She now gets 2 overnights (in her home), and 12 hours to use as she wishes to allow her other children to attend football/gymnastics.