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SN children

How are we expected to carry on each day...................

36 replies

anniebear · 25/02/2006 09:02

This is deja-vu



I am sitting in the same place as last Saturday close to tears again

sorry for yet another moan, no one else will listen!! lol

Ellie woke last night from 12.30-2.30 and we put her back to bed 26 times . I can't believe it

Again and again...... I could have packed my bags and left, wish I had!

It was pretty pointless as she then woke at 3.50am. Would have at least hoped she would have slept till 5 or 6 after being awake that long

How on earth are you meant to get up and try to live a normal life each day?

Told DH last night at 2am that I was going to ring SS today and they can have her

Of course I haven't!!!

Sorry, I know lots of you listened and gave advice last week. I just can't believe we had to put her back to bed 26 times in the middle of the night

Thing is, why bother? She is unable to think the next night "Oh, no point getting up they will just put me back to bed" It just doesn't work like that for Ellie

I just don't know wht to do.

DH kindly gave up his Saturday lie in so I got an extra hr in bed

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KBear · 25/02/2006 09:10

anniebear - I'm listening!

poor you, you must be knackered. I have read some of your posts so I know a bit about Ellie's SN. I have no experience of this so I'm not in a position to give you any advice but I'm happy to be a listening ear while you let off steam.

kbear
x

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anniebear · 25/02/2006 09:18

I'm so fed up with the girls, haven't had a too bad a week really (half term) either, so I should be ok

meant to be going to a party today but Grace doesn't seem 100% and is screaming her head off as I type as she is having a quick shower! Don't know what to do about the party. She will be gutted if she doesn't go.

I just can't take anything. I end up screaming and shouting at every little thing

Just seen next door go out, poor man!!!! lol, bang went his Saturday morning lie in!!!

Really dislike the weekend, sometimes it's worse with DH here, although he is a good help

Thanks xxx

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Feistybird · 25/02/2006 09:25

AB, my dd (no SN) has got me up every night except maybe a total of 10 nights for the past 2 and a half years - I could've put her on ebay yesterday, I was so knackered. She gets up and can function perfectly, whilst I wander about like a zombie.

Knackering, isn't it?

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Twiglett · 25/02/2006 09:29

poor you .. it must be total torture .. I'm also listening (well reading)

I remember reading previously on this board of people using melatonin (was that it) to help with specific sleep problems ... have you thought about something like that?

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emmatom · 25/02/2006 09:30

I can offer no advice based on experience, just wanted to let you know I read and felt for you. Without sleep, the smallest thing is a mountain to climb.

You can't be expected to carry on like this indefinitely though surely. I'm assuming there is some type of professional body that provides support and assistance? Can't they help you, before you go under?

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Twiglett · 25/02/2006 09:31

sorry I have this problem with always trying to sort things

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anniebear · 25/02/2006 09:34

thanks

tried melatonin 3 times now!! she is one of the 20% that it didn't make any difference to!

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Twiglett · 25/02/2006 09:36

oh poo .. is there nothing else? I just can't envisage having so little sleep for so long without going stark staring mad

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anniebear · 25/02/2006 09:36

a hammer

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Eulalia · 25/02/2006 10:08

Can you put a bed in your room so that she is still near but at least in her own bed? I co-sleep with my dd but she does spend the first part of the night in her own bed so I get a few hours peace. She is too big now for sleeping with me (3.10) and I have ds2 also who is 6 months and the bed is getting too small (dh doesn't even get a look in!) However we have no other bedroom at the moment (house being renovated) so its the only 'solution' we have.

It sounds like she just isn't learning that she must stay in her own bed and all you are doing is wearing yourself out repeating something endlessly, unless it has worked in the past? Sorry not followed your story closely.

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Eulalia · 25/02/2006 10:10

Meant to ask - how is she in the daytime - tired? or can she just cope with so little sleep? Can you sleep any time in the daytime yourself to catch up when she is at nursery/school? |I think you said you had other children though.

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getbakainyourjimjams · 25/02/2006 10:31

annie-bear - I think you need to look into things she can';t get out of- either gating her room (we had to do that with ds1- 2 travel barriers one on top of the other (see here , or- as you said before she trashes her room- a grant for a safespace- why not email them and aslk how other parents have funded it- they will know of any grant awarding bodies.

safespace

I found that putting ds1 back to bed repeatedly just did not work, but once he couldn't get out of his room- he then started to settle.

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getbakainyourjimjams · 25/02/2006 10:33

oh that's a shame the "what carers say about safespaces" link isn't working, but I've read it before and it was all about how they were getting their first night's sleep in years etc etc

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getbakainyourjimjams · 25/02/2006 10:34

Have a look at "how to get a safe space" - they help with funding.

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Saker · 25/02/2006 11:29

It's not ideal but could you make a bed for yourself in her room? Then she would be in her own bed but have you close. If Ds2 plays up in the night sometimes I grab a duvet and my pillow and lay on the floor in his room. It's infinitely better than being cold and upright. Or would she just be in and out bothering you still? So sorry you are having such a hard time. I hope you will feel a bit better once they are back at school and you get a bit of a break.

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Saker · 25/02/2006 11:30

The safespace stuff looks really good for the longer term.

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dizzy34 · 25/02/2006 11:35

Anniebear, would your docs let you try clhoral hydrate. Melatonin never worked for ds either, but chloral works like a dream.

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monica2 · 25/02/2006 12:43

Hi AB I can really empathise with you on this, dd didn't sleep for 7 years until we were prescribed melatonin by her paed. It worked well getting her to sleep but we still had a year of her waking in the night. She was then dx with a sleep disorder (common with ASD) and we have recently started slow release melatonin along with the other tabs. This is the first stint we have had of her actually deep sleeping,(she is now 10.5!) (although still wakes with night terrors) may be checking which type of melatonin you were given.
Also have you looked into sleep therapy, although not much provisions for kids, my friend who is a CPN and works with SN kids in Sefton has completed a sleep course with a view to setting up a sleep clinic for kids, she is based at Alder Hay, may be worth asking about (are you in the Wirral?)

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anniebear · 25/02/2006 13:44

Thanks everyone

chloral hydrate has been mentioned a long time ago, but this was one of the worst nights we have had and it isn't always that bad so not too sure about sedating her, and worry if she had seizures but was sedated???? Or am I being daft there?!!! Not that she has had any for a while!!!

Also worry what she would be like the 'morning after'

safe space looks good, just maybe seems a little extreme for Ellie. and obviously would need lots and lots of funding for it. She didn't bang herself on the wall last night at all, just clawed at her face and hit herself, other times last night she went straight back to bed no problem, just got up straight away. We shut her bedroom door tight but she knocks on it. Last night she woke Grace up

May look at sleeping in her room, just we only have a 3 bed roomed house and not big rooms

We see her Paed the end of March so will talk things through with her also

Thanks xxx

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anniebear · 25/02/2006 13:44

Yes, I am on the wirral

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buzylizy · 25/02/2006 15:06

what a nightmare.I can't offer any advice but just wanted you to know that I am thinking of you.

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dizzy34 · 25/02/2006 17:48

AB,

Harry wakes up from chloral and is fine (well fine for him). Chloral is actually a 'rescue' med so she shouldnt have any seizures whilst on it, if anything it may prevent them. It may be worth discussing it with your consultant and maybe trying it on a trial basis in conjunction with a sleep clinic or sleep training programme. we give harry his chloral at about 8.30pm and he sleeps till about 7ish am. Its an option anyway. Thinking of you, i know theres nothing worse than sleep deprivation.

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sphil · 25/02/2006 18:02

Sorry - little hijack here. Monica - our paed told us that slow release melatonin only comes as a huge capsule. Is this what you use? And if so, how do you get your dd to take it?!? We also have a problem with mid of night waking - worse if he's given melatonin at bedtime. But no way he'd take a tablet of any size.

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anniebear · 25/02/2006 18:45

Thanks Dizzy

to be honest she hasn't had a seizure for a while now anyway!!

Just I know she could start with them any time, and was worried that I might not see them the same if she was sedated??

Will ask the Paed when I see her

sphil , we had the big capsule also but had to break it open and give her the contents in a spoonful of yogurt!!

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anniebear · 25/02/2006 18:46

we have had the slow release Melatonin as Ellie is fantstic going to bed each night

Its the staying asleep thats the problem

a friend said she was told she could take a combination of the Melatonin , anyway do that?

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