Cracking up with 5 yo DDs sleep (or lack thereof)

[Endlessdark]

DD has always been a rubbish sleeper, stopped napping shortly after 1 and in general has bundles of energy. I have a 1yo dd also and they share a room.

have had some concerns about her RE ASD, however haven’t managed to successfully get her assessed despite going down 3 different avenues. First I contacted school who said they can’t help as she masks as school but gave me the name of the local authority to contact and said also go through GP. Tried local authority who said no they don’t take direct requests, went through GP who said wait 3 months and if no improvement they will send referral. Waited the three months with things getting worse, had an appointment with the GP who sent off referral in May. Received a letter last week saying the referral was rejected because not enough info was supplied and told me to go through the school. So yep, round and round in circles. DH not fully supportive of an assessment as he thinks she’s just a quirky kid, however doesn’t get the brunt of her behaviour at all and he travels for work a lot. Despite this I contacted a private paed who specialises in ASD for an assessment, just need to find the funds for that.

basically dd will not sleep at night. It takes hours of fighting before she will go down. She’s often awake in the middle of the night anywhere between 20 minutes to 2-3 hours. Wakes up early too. I keep her very active, playground every day after school as well as playing at home. She eats a select few foods but a lot of them if that makes sense so she isn’t hungry! I’m on my fucking knees, this week has been awful. She wakes her sister up multiple times a night, I’m getting barely any sleep. I lost it tonight and demanded DH come home because I can’t cope with the 4 hours of endless fighting. I get zero time alone, house is a shithole all the time because as soon as I clean she is wrecking again. please has anyone got any advice??? As I wrote this she has gotten out of bed again. I can barely keep my eyes open I’m so tired.

@Endlessdark I hope your meeting on Monday goes well do you have to take DD with you? If possible I would suggest she doesn't go (less distracting for everyone!) but if she has to - lack of childcare or whatever - hopefully they'll have something that she can sit and play with away from you. I have a GP appointment in a couple of weeks' time which I may have to take the DC to - tried to book the after school club but it was full - hoping I can bribe them with some iPad time to keep them quiet

@Phineyj I really hate bedtimes... sometimes it feels like my whole day is structured around it, making sure DTS1 has eaten enough, done enough exercise, is tired but not overtired, can have a long enough shower etc...! But it is marginally better to do them on my own as DP is clueless, and definitely better than DP doing them on their own, as Monday proved... and your castle in the clouds comment did make me smile! DTS1 used to wake us up with his Justin Fletcher album, I came to loathe the cheery face on that CD cover...

Oh yes! Joining you in the hating bedtimes club.

Not like that's the only aspect of life DD struggles with, either.

I'm a teacher (mostly exam classes) so Sept-May is highly stressful in our house as DH and I try to ace bedtime so I can plan my lessons.

Before we found out DD had various issues we decided we were both decidedly B- parents. Now we think the exam is just hard.

[puts rubbish metaphor to rest]

All I can suggest is you do whatever makes you personally a bit less likely to implode. MP3 players and fans work for me. Classical music stops the red mist descending and the fans mean at least we're not all dripping with sweat...I have spent a LOT of money on DD's room decor too as I spend so much time bloody sitting in it!!

There was nearly a complete meltdown today @Phineyj - from me, not DTS1

DP has been an absolute arse all day - 'It's FATHER'S DAY and I don't have to do ANYTHING!' - as I have heard non stop since 7am he hasn't lifted a finger, has refused to help with any mealtimes, wanted to watch a film but refused to choose a child friendly one so I had to take the DC out for a bit, wouldn't help the DC with their homework etc etc... then DTS1 was completely shattered but would not go to sleep. It took over an hour from lights out, white noise on etc for him to actually drop off, and by that point I'd been on the point of losing it with him. I was tired, hungry, wanted to ring my own DF to say Happy Father's Day (hadn't even had time to do that!) and was just beyond fed up with the whole situation. There was a bit of shouting involved!

It's just so bloody frustrating - DTS1 was exhausted, red eyes, so tired - and in the morning he'll be bad tempered because again he'll be tired. He said DP had been telling him about some wars(?!) and now he's too frightened to go to sleep by himself. FFS

I'd just like to add something about melatonin. My now 14 year old had awful sleep, Couldnt get to sleep for hours. Was falling asleep in class when he was about 9. My canadian friend had some otc melatonin and I tried it as I was at my wits end. I've friends who are OTs and child physcologists and all of their advice came to nowt. One night of melatonin and he was asleep in 30 mins. I spoke to doc once about it and he said 'oh no, we'd be very slow to prescribe, we don't want them thinking they've to take a tablet to get to sleep' but to me sleep at that age is, after diet, the no 1 thing for health. Sooo long story short, I don't actually have a prescription, I coukd get one if I pushed but don't bother. I get anyone I know going to states or Canada to bring me back boxes of it. It's otc there and v cheap. I'd advise that you try get some and try it to see if it makes a difference.

I'm sorry @MissSusanPevensie your DP is an absolute arse to do that to you

Oh dear @MissSusanPevensie you have got a difficult child there...and it's not your son!

Speak to DP when you're both calm. "Special occasions" can be real trigger points in our family too (they just never seem to work out like other people's) but if the adult wants a break/treat, this takes place outside the house...you don't send everyone else out! And you don't make things harder for the other parent.

I'm going to speculate that you didn't get a similar mother's day...

The melatonin thing. Kids with ADHD are lacking in dopamine so it seems likely that other aspects of their biochemistry (like melatonin) are different to the norm.

That doctor's comment is really ignorant. Children (and adults) need to take medication for all sorts of things so I don't know why sleep is different. In fact sleep is even more important because of knock on effects to the rest of the family.

@Acorncat1 I wonder why melatonin is prescription-only here and OTC elsewhere? I'd have thought that in (for example) the USA it would be harder to get medication, given people's eagerness to sue for any issues!

Thank you @SiouxsieSiouxStiletto , it's just been such a tough weekend. DP came home in such a foul mood on Friday, drank two bottles of wine, woke up in a foul mood on Saturday, then spent yesterday applying his 'rules' to the whole day... "no, I don't have to put my things in the dishwasher. No, I don't have to take any clean laundry upstairs. Why are you going to the supermarket? I said I didn't want anyone spending more money today!"

Treat/ special days are hard here too @Phineyj - I don't go on social media a huge amount but DP will spend his time glued to Facebook muttering that everyone else is getting XYZ treat... then DTS1 plays up because he's overtired/ manic/ can't cope and it all just spirals and you're completely right, I got a bunch of flowers on Mother's Day and that was it!

That's interesting about the dopamine - is the lack of dopamine what can also drive people with ADHD to take greater risks/ lack a sense of danger? Or is that just my DS?!

I hope your appointment goes/ went well today @Endlessdark

Yes I agree, @Phineyj, totally stupid thing for him to say. @MissSusanPevensie, probably something to do with lack of studies? I don't know, I'm not totally happy giving it but the alternative is shit. I just hope it doesn't affect him long term, but I think that lack of sleep is probably worse long term so it's the best of the bad lot!
I'm in Ireland too, same rules as UK but find it's probably easier here to get medication prescribed? I don't have any scientific proof for that, it's just a hunch!

I think when you lack dopamine you'll do a wide range of things to increase it. Some of those are positive and some of them are negative.

Kicking me on the shins. Not so good.

Getting up at crack of dawn and making me and DH a cup of tea and coffee respectively (we didn't know she knew how to use the kettle!) More positive, if a little scary...

I took my own mum out on mother's day after the previous two shite ones!!

Hi OP ( and everyone else!) you have my sympathies - on of my DC has ADHD and anxiety. He’s 12 now but for many years his sleep was truly terrible ( often waking at 3.45 for the day). He is now on adhd meds ( which had a huge difference in school although much of this is now masking so knock on) and does take melatonin. His sleep is now relatively OK unless very anxious.

I was a single parent ( working full time) and honestly feel like it’s left me with some sort of PTSD - I actually almost have a panic attack if either kid looks like they won’t sleep! However did want to say it does get better.

I never did this as wouldn’t work with my DC, but my friend whose DC is ASD goes through periods where she has just accepted she will co sleep. Not ideal but it means everyone gets some sleep at least and she is the safe place for her DS. Again the amount she has to do this has decreased with melatonin and age. Hope you get some help soon.

Oh I am also so lucky to have discovered a colleague with a DC with adhd. Sounding off to someone who understand or just being able to say ‘tough night last night’ has probably made the biggest difference!

@Giraffesanddance I really relate to your PTSD comment - I feel panicky/ angry every time DTS1 starts faffing around at bedtime now! Partly because of his poor sleep in general and partly because DP is so bloody useless - he lets the DC mess around for ages whilst completely ignoring them, then when he wants to go to sleep he snaps at them and then gets in a mood when they're too hyped up to go straight to sleep

DTS1 was terrible Monday night - almost 2 hours to get to sleep - then yesterday was of course shattered, bad tempered and manic with lack of sleep. Last night DP was out (hurrah!) and I had DTS1 asleep in less than an hour, which frankly counts as a win he got 10.5 hours of sleep and was still tired, though!

@Phineyj I was on a course about ASD & ADHD today and they mentioned the lack of dopamine in ADHD brains - fidgeting/ moving around and never bloody sitting still/ demanding attention all create dopamine, apparently! People (especially kids) with ADHD can use all of these as a form of self-soothing. Definitely true for DTS1...

Yes to the PTSD comments. Even going to bed / evening times make me anxious. I often wake unable to breathe - have been to doctor and nothing physical and they eventually decided (and I agree) just anxiety related. It’s so tough!

Sorry to read about some less than helpful DHs. Mine is pretty good although sleep and related stresses for sure bring some clashes at times.

wishing everyone a restful night x

@Ahna65 we had a terrible night with DTS1 he was exhausted again and still, an hour and a half to get him to sleep... the rage/ PTSD is real here!!

I've decided that enough is bloody enough and am going to ask the GP for advice - we just can't go on like this, he's shattered in the mornings when I have to get him up for school, and I'm constantly tired, grumpy and on edge. Just the thought of bedtime is often enough to cast a cloud over the day!

100% relate to the ptsd comment!! I have that same feeling. I can literally feel myself getting ‘wound’ up as bedtime creeps closer to the point I think I set us both up for failure. Tonight has been fucking awful after a relatively good week (bed at 10pm last night!!)

tonight she is very unsettled. Just shouted at her to get back into bed and now she’s screaming crying. Baby is awake. I’m just fucking over it. When I ask why is she out of bed she just says “I don’t know”. That’s after playground, a trip to McDonald’s and endless playing tonight once I got the baby down. It’s relentless, I’m sorry to say I actually wish I would die in my sleep sometimes. I’m finding this so unbearable and h is useless. He goes away again on Monday so it’ll be just me again. Every two seconds is “mummy look at this. Watch this mummy. Mummy YOURE NOT WATCHING” it’s never fucking ending.

the SEN meeting at school ended up just being a meeting with her teacher as the Senco has been off sick all week. We’ve set up a school/home diary but to be honest I have no idea what I’m supposed to write in it that will benefit us in any way. It almost feels like I’m tattling on her to her teachers, and I can tell they think there is nothing wrong with her. God I fucking hate my life sometimes. Sorry for the humdrum, feeling utterly defeated and frustrated.

i know the “watch me mummy” is normal, but is it normal that it’s literally every 2 seconds? Even stuff like “mummy can I drink my water?” (The water I’ve just sat down in front of her) “mummy can I eat this bit of my chip?” (Why the hell do you need permission for that?!?!) Going to the playground is exhausting, she cannot play alone or with other kids so I’m just endlessly running around while the poor baby is stuck in the pram.

You possibly do this anyway but the following helped for me…

Absolutely nothing sweet at all after 2pm, no fruit, biscuits nothing. Lots of fresh air, ‘calming down’ time from 1 hour before bed & a fan on a bedtime, think it’s the sound that helped. I think the best overall thing was the sugar ban!

Hood luck, it’s really awful.

Annoyingly sugar doesn’t have any effect on it whatsoever 😞 I’ve tried cutting out sugar completely and things were the same. As it stands I let her have an ice cream on a Friday and Saturday because I don’t need to worry about school the next day. We do drawing and reading in the evening - no tv or iPad or anything overstimulating. Nothing works.😞

@Endlessdark - as you know I have no magic wand for this sadly, but sending you much sympathy

Less/ no sugar doesn't work for my DTS1 either; I mean he definitely needs the fresh air and exercise but it's not like it actually tires him out, he's just less bad without it! He's still pretty much "Mummy Mummy Mummy" as well he has got to the stage now though where he'll usually lie in bed quietly till he falls asleep, as long as I come in every couple of minutes. I just don't understand why he doesn't GO TO BLOODY SLEEP when he's absolutely exhausted!

Sorry to hear your meeting was a bit of a damp squib - please do note everything in the diary though, it might be that the teacher can connect up the dots with some things that happen in school? And also please contact your GP on your behalf - again, if you get it on record that you're shattered and finding it hard to cope because of your DD's (lack of) sleep, perhaps they will be more likely to help if an issue is identified with your DD. Or perhaps there's something else they can suggest/ prescribe for her!

Thank you, it honestly means so much to have the support on here! It’s so useful having people going through the same thing. I’m definitely going to contact the GP next week. I’m already on sertraline but tbh it doesn’t do much for me in terms of anxiety and low mood so maybe need something else. I’ve switch their room around this morning and split the bunk beds so it’s two single beds now. It means at least dd isn’t climbing up and down constantly! I’ll see how this goes and if it’s still the same I will give up my bedroom, have already been looking at some ikea sofa beds that look quite good!

so far in her diary they have reported that she does seem to play alone - albeit happily - a lot of the time. She also is quieter on the days we have a stressful morning (her refusing to get dressed, delaying, avoiding until I have to rush to get her dressed myself). She never gets herself dressed, I’m anxious about this as I know all the kids in her class are able to. Her teacher says when it comes to PE she gets changed and dressed herself but is VERY slow. Also other stuff is trickier to show like her only ever eating with her hands (because she has to ‘feel’ her food) because I send her with a packed lunch (she will not eat the school dinners) which is all hand eating anyway!

@Endlessdark - just sending you some sympathy as I honestly know how it feels to be in that dark place.

Your comment about ‘watch me mummy’ is interesting as my DS with adhd/ocd does this still. I think it’s a reassurance thing and possibly OCD mechanism. He also does it to his younger sibling which drives my poor younger one crazy. The other thing he will do is say ‘I am good at x aren’t I’ over and over. Now he is older he can sort of express himself better and tells me he can’t stop himself when this happens it is just out of his mouth/ doesn’t realise he is doing it. Makes me very sad for him. He also asks permission for things - so he is starting to be left at home for 30 mins on his own and rings me to check he can go to the toilet for example!

I don’t really have any suggestions other than trying as best as possible to get to a place of acceptance - which isn’t easy and I still often snap. And removing as many demands as possible ( example he now eats on his own and I just accept this).

Also for him ( and lots of SEN) screens can be a soothing mechanism. Screen use certainly doesn’t impact my DS sleep ( unlike his Nt brother).

Just chiming in to say that screen use has no effect that I can see in my daughter's sleep either. We also have the TV on while eating (which totally goes against the values I grew up with) but she seems to eat more - it appears to act as a kind of helpful white noise.

She's perfectly capable of eating round a table when called on to do so.

I agree screens/sugar doesn’t effect her either but I just know that that will be the first thing everyone recommends 😞 It’s interesting you say about OCD as I was diagnosed a long time ago now and am medicated so possibly she has inherited it from me. It has crossed my mind a lot as she is very anxious when things are out of place. Feeling very emotional tonight. Took her to a birthday party today and it was awful. She didn’t want to be involved with the other children at all, we spent most of it walking around (it was on a farm) or with her on my lap. I watched the other children when they sat down to eat talking and chatting and laughing etc with each other so casually - she doesn’t do this at all. She sits in silence pretty much unless she’s asking if we can go home. when we arrived she said hello to the other children and they all ignored her (although she did say it very quietly) and I could see it made her feel sad. My heart is breaking for my beautiful, quirky little girl and I have no idea how to help her.

Aw OP - it's OK not to like parties. Those big Reception parties are quite hard I think. I remember DD being like that at a Disney themed one and also hiding under the table at another!

She does actually like parties now (the older they get, the less people they involve) but she definitely wasn't always keen at that age.