Please, what on earth can we do to get DS to sleep we are nearing breaking point

[hereidrawtheline]

DS still waiting for his DX - seeing CAHMS this Thurs, I reckon most of you know his smattering of issues from the long long time I've been posting waiting for some news with him

Just to update - he has been having the odd night terror here and there - I assume this is what they are, example he's woken us up at 2 am standing in his room screaming saying he cant open his door (he must have first closed the door becuase it was left open) and then it kicking off a long meltdown where he seemed to be asleep because he wasnt making any sense but his eyes were open & it was fixed by our meltdown procedure (him inside my arms & legs, me rocking & singing) this same kind of thing has happened again.

He is having loads of isses atm tbh. He is widening and blinking his eyes all the time and when he sits still his mouth makes this constant noise as if he is smacking his lips. I dont know. I am knackerd.

But to get to the point he isnt sleeping! He is being put to bed then getting up and coming to us in the living room saying he cant sleep but after a very short amount of time, 1-5 mins even. This carries on for ages. Eventually we get him to sleep in bed with me but this takes a long time and then of course I haevto be with him when sometimes I need to be doing stuff out in the house. Or actually, I need to be sleeping but he plasters himself to the side of me and sometimes I can move off the edge of the king size bed so I dont get sleep. Sometimes I can sleep with him comfortably and I love it but sometimes not.

Then we put him in his bed last night at midnight b/c he was fast asleep and he transferred fine only mumbling "where are you putting me?"

So DH and I went to sleep exhausted about 1230. But then he walked into our room at 3 am saying he was awake now and couldnt sleep anymore. And nothing we could do would get him to sleep anywhere. At 4 or so DH took him out of the room so I could get some sleep because I am really buckling under the strain and it is going to badly aggrevate my migraines. So DH didnt get any sleep but I slept til 7. But we are just absolutely shattered.

DS is napping in the day and I know the obvious thing would be to cut that out so he'd sleep at night but the way DS is with his SN (?) is that he really can not get through a day without a nap without going mental. That has always been the case but he has still sleot fine at night. I just dont know what to do.

He's been awake now since 3 am and I am about to take him to preschoool. He'll get home at 12:30 and he will have to drop into bed for a nap because he'll have been awake such a long time which he cant cope with. I dont know what to do.

Gonna go now take him to school TIA

im guessing you have tried some kind of nightlight/projector etc?

can camhs not help you with this?

we have melatonin as ben was hell for waking up before that but i know nothing on night terrors sorry, just didnt want to read and run!

he has a nightlight but no projector. I will see about getting one of those, thanks.

We are seeing cahms for the first time on Thurs so I'll bring it up to them then.

Sounds familiar HIDTL. What we have found makes life bearable, is to get a prescription for Melatonin for DD1. That means that at least she settles in the evening.

As for night waking, DH brings her downstairs, they sit in the dark - no telly, no lights, no food, no drink. She eventually (30mins-1hr) decides to go back to sleep.

when he naps, do you leave him to wake up naturally, or can you wake him after a while?

if you wake him, then you could try waking him 5 mins earlier, etc until you reach a balance where you feel he might sleep at night too.

I feel for you - dd1 has recently started ebing terrified at night, and not going to sleep (unheard of for her - she has slept through since she was 7 weeks old, she's now 4.10, an other than nights where she has been ill, has never been bothered before), and it quickly escalated to the point where dh or I had to be in the roo mwith her for her to settle to sleep (despite me assuring everyone on here that that wouldn't help )

it is a nightmare, as, like you, I have stuff that needs doing all evening, and I haveto be on the floor pretending to sleep until whenever dd1 decides to go to sleep (usually around 11pm). dh and I are doing the slow withdrawal method - basically, we went with dd1's wishes for a couple of nights, to get her calm, and since then, we have been pushing to the boundary of her comfort zone each evening. the idea is that we stop short of her panicking (would defeat the object) but that we don't let her get complacent, either (as it is not a situation we want to continue)

so each night we moved closer to the door, wihtout fuss or bother, just moved the cushions we were lying on further away form dd1's bed, and then settled down as normal. we are now outside the door (door open, another first for dd1), nearly out of sight. we stay at each stage of movement until she is fully comfortable with where we are, and has stopped coming to check that we are there, then move a little further away the next night.

the long term plan is that we move out of sight completely, with thte door open, and then start working on closing the door, again a little by little (with us still outside but out of sight.

it will take time, but dh & I feel better that there is even a plan in place, and dd1 has so far tolerated our movements well (it is only 5 days since we started moving away form her bedside, and we are outside the door already)

the general idea is to get dd1 used to self-settling. that's why we edge away, pushing her close to her comfort zone boundary(but not beyond) - so that she is alittel uneasy, but not enought to panic over, and then she learns that it is ok to be uneasy, and that she can calm herself. small steps is key to this, I think.

we have not (yet) ha an issue with dd1 panicking int he middle of the night, but I imagine we would use a similar technique to settle (keeping the same movement line impotant I would think, to keep the level of self settling consistant)

it will be disruptive, and it won't be cured overnight, but would having even an outline of a plan help you cope a bit better? I also think it is important that you and dh take turns in dealing with your ds (i know you said in your OP that your dh does) - it gives both of you a break (at times), and it also doesn't allow your ds to get too fixated on one person being there at all times (I know you have had an issue with this before, as have i with dd1)

We have cycles of this, and DS is never a good sleeper. We use lots of strategies. We have a nightlight and a projector here too - He will sometimes calm down lying in bed watching bubbles projected onto the ceiling. We use a 'bunny' clock which tells him when he needs to stay in his room, as he was coming in to our room at all times of night. This stopped the nocturnal visits to us, but instead he would go to the bathroom and spin and flap at 4 in the morning! A weighted blanket has also helped - it takes away his need for me to be next to him.
Our biggest asset is the dog - she lies with him when he gets into bed which has freed us up.
I am with you on the daytime nap - my DS is 6 and at school and still needs to nap in the day, regardless of how much he has slept at night - he just cannot hold it together all day.
The lip smaking and eye widening - when is this happening? My DS does similar and he has focal epilepsy. If he wakes following a seizure he can be very confused and frightened. We also think this contributes to the disrupted sleep but are awaiting a sleeping EEG to confirm.
We do not use melatonin, though the paed offered to pescribe it, as DS goes to sleep ok, he just does not stay asleep. May be useful for you to try though.

Thanks all for your great replies. A few thoughts in response:

we have a weighted blanket which worked wonders for him before and now although he still likes it it clearly isnt enough to keep him asleep or even get him there atm.

Funny our cat sleeps with him, widemouthfrog, and that has been a huge blessing at times!!

I do think he should have Melatonin but as far as I understand it I have to wait for the pead to give it to him. I'll ask her though.

The eye widening/lip smacking thing - it seems to happen off and on all day but much more so when he is tired.

We have had a rule thus far never to wake him during a daytime nap. The reason for this is the couple of times we did ages ago when he started showing a lot of problems, he reacted so very violently badly. Even if he'd slept a good amount of time waking him he went straight into meltdown and they were of the worst sort. So we just stopped doing it altogether. Now what we do is if it has been longer than say, 2 and a half hours, and we really need him awake, we open his door so sound gently filters in to him and he wakes slowly. But even then at the moment I am just not sure it is healthy for him to be woken considering last night he only slept 3 hours! And he is almost 3, very active, and going to preschool today etc so I just worry if I wake him his health will suffer (mental and physical) because he wont get enough rest. So I am really confused tbh obviously I want him to sleep at night but not if it will make him worse.

when your ds naps, are his curtains drawn? if so, would a natural light alarm clock ehlp? you know, the ones that help you wake naturally by slowly brightening the room to daylight (simulating a sunrise), and can also softly play natural sounds too.

dd1 stil has a rest int he day too (5 in August), so i know how important they are, but I do think that you need to try to get abalance back, and if your ds sleeps too much in the day, then he will naturally feel more awake at night. I don't think you should get rid of his nap totally - he obviously need it, and a better rested person is a happier person, imo, but if you could trim it by 5 mins or so every few days until it is a better length?

also, where your ds is getting overtired (since he is up half the night) - have you tried moving his bedtime a bit earlier too, to stop him being too tired at bedtime to settle easily? this could work with cutting down nap time a bit too (apart form the meltdown situation)

dd1 used to do the meltdown thing on being woken in the day too (and still does on the rare occasion she now sleeps during her rest).I spent a while when dd was your ds's age jsut sitting with her when she was woken forma nap, for a good 45 mons or so, as she was inconsolable. I keep meaning to try a natural light clock with ehr (we use one, and it has made the world of difference to dh, who is ntoa morning riser ), but haven't got around to it yet.

that natural light alarm clock is a good idea - his curtains are drawn but they arent black out they are sort of medium in darkness.

Can anyone recommend a good projector thing for his room, I'm not having any luck finding one on ebay atm.

I agree silverfrog his naps need to be shortened on these occasions. Need to stop quaking in fear! LOL

there's the moon in your room, and rainbow in your room projector things, which tend tog et good reviews. what sort of thing are you after?

I know exactly what you mean about quaking in fear, but you need to get some control back over his sleep situation

I was thinking something that moved, like stars or something that moved around his room. I think watching them would keep his attention & make him stay in bed, and also lull him to sleep.

We have a moon in your room and a rainbow - the moon can act as a night light. DS loves them as part of his sensory room.
We also have a mathmos space projector - ridiculously expensive IMO but both my DS's absolutely love it www.mathmos.com- should be easy to find by googling or on ebay.

Re the lip smacking - not sure it is a epilepsy thing after all from what you describe - sounds more like a tick or a stim. My DS clicks his tongue.

Is the weighte blanket not helping because it is now warmer? Is he getting hot? Ours works better in winter too

I love the mathmos lights - that is the sort of thing I wanted but my god it is expensive!! His birthday is coming up though I suppose but I dont really want to wait til then to help him sleep!

My nephew had tourrettes - he died of cancer many years ago. But we assumed he had it from his birth father (his mum is my sister) because he had tourrettes.

We bought ours along with a bubble tube and other sensory toys with a grant from the Family Fund

do you haev to have a DX for that?

I got DS home from school and he was really upset but wanted to watch a show on tv before nap. He fell asleep curled up on the floor in the living room & I picked him up & put him to bed. Had to get a nappy on him while he was in the foetal position!

Evidence of disability i think rather than diagnosis - so paed reports, DLA, etc is evidence.
Family fund is for families below an income of around £23,000.

HTH

ah - we are above that income but I'll be damned if I can see it. Oh well. Thank you for the information anyway!

i did a post of other charities on here, someof those dont have a income threshold so maybe look at them??

also do you have anywhere like a play support type place in your area you can hire a projector from on a temp basis. at least then you know if its worth you buying one?

oh thank you I will look for those links!! And look into borrowing one too. Thanks. I do really want one for him. DH is sitting in his room in silence now til he falls asleep.