Am so fed up and tired

[anniebear]

This is a moan alert, sorry it is so long

Sorry, just needed to off load

I am just so tired and fed up (not even half term yet!!)

I just want a full nights sleep and don't see any end to al this, no light at the end of the tunnel. Our night times have been and could be a lot worse. Ellie used to scream so much at night and banged on the walls so there was blood on them in the end. We used to put her back to bed but gave in and at some point she will come in with us. Not ideal but I need some sleep.

But I can't see this changing. When she is 10? 15? is she going to be coming into our bed at 1.30am?

Then she can be wide awake from 5. I realise a lot of you have it a lot worse so I am sorry for going on.

But I struggle to cope as it is and I can't carry on day to day after being awake so early. The worst thing is she is so wide awake. So she yanks on my Face ("I need Mummy, I need Mummy") and moves round so much that she ends up hurting me, but not on purpose.

I am so tired that I then can't deal with her at all and end up getting so cross. She comes out with stuff that doesn't make sense. She just wants to talk to me but doesn't always have the correct words to say. So I get asked again and again and again questions that don't make sense. Sounds really stupid but it cracks me up. This is 5 in the morning!

I sat and cried the other day and said to DH "I don't want a SN Child, I just want another child like Grace" Obviously it goes without saying I love Ellie lots.

Just feel so haggard. I know I look terrible, part of me doesn't care anymore. I comfort eat, my face is lined and haggard that I look so much older than 34 and it is not fair.

Some Parents of SN children were talking the other day about High School and beyond. I was on the verge of filling up. Didn't want to even think about it.

I know I am going to be 60 (if I make it!!) and have Ellie with us 24/7 . I sound so awful and it is not her fault and I love her so much. But is this it? My life consists of seeing to the girls, lack of sleep, shattered and I see no light at the end of the tunnel

I also know it could have been much worse. Ellie was supposed to be left severely brain damaged after her illness so I know we are fortunate. But I don't feel it

I am sorry to off load on you all. I just really needed to tell somebody how I am feeling

Thanks so much

lol lol

Yes can't wait till Monday

That made me laugh anyway

We have tried Melatonin 3 different times now and it didnt work. We do get Pherergan on prescription, but just give her 5mls and this sometimes makes her go back to sleep for a bit in our bed rather than being wide awake

I have made arrangements for every day next week, but we shall see. Usually everyone falls ill and I get phone calls saying "sorry, we will have to cancel"!

If it was too bad, DH can always take a day off to give me a break which is good! And I know we are fortunate that he has a job were he can do that. But he is exausted also, I don't know how he does a full day in the office (but ssshhh, I will never tell him that

He is just going to take her out to the park so I will have a bit of peace for an hour , unless Grace decides to stay with me!! Knowing her she will!

Thank you everyone for your suggestions and support...it realy is invaluable

Thank you xxxx

re; respite, my DD1 has 24 hours a months, 3 saturdays a month for 8 hours. We have had it since she was 4 1/2. This means I can spend time with my other 2, sleep if I want (dh watches the other two) or catch up on my housework. I would kept on at social services and make them listen (I had to have a full breakdown before they would listen)

I'm sorry you are so fed up though I don't blame you, you have got it very tough. Early morning starts are the worst and you feel like you have done a full day before breakfast. I was thinking about what you said about being bored in the day while the girls are at school. I hope this doesn't sound trite but can you find something of your own to do? It might make you feel better all round if you have some separate interest. For example, we have a large chaotic garden that is a disaster at the moment. I am thinking of signing up for a a 10 week course which runs during school hours where they help you to make a design for your own garden. Is there anything like that you would fancy that would give you something different to think about?

Also it might be worth putting your name down for respite because I gather it can take a long time to get sorted and you might want it further down the line if only to let you spend some time with Grace. You could always turn it down if you didn't want it later.

Thanks

yes, there are many things I could do. I did start selling Usborne books before Christmas but am just so tired and just have no get up and go whatsoever. Need to tidy up the garden and plant a few things, need to tidy the house!!!!lol

We have applied for DP a while ago (ages) but I suspect we will get the minimum amount

I'm sure you can find plenty of jobs to do but I mean try to find something you will really enjoy yourself. The garden is something I would enjoy, not a chore, but it shouldn't have to be useful at all. It's easy to say I know and often harder to put into practice.

Please don't take this the wrong way, but is the reason that Ellie doesn't sleep genuinely because of her special needs? I know I let Ds2 get away with a lot more in general because I think he doesn't understand and then sometimes I wonder if I am just being taken for a ride. I'm sure you have considered this, but I wondered if any of the techniques used for NT kids who play up at night could be modified. As I say, please don't take it as criticism. I know when you are sleep deprived it is really hard to do anything and also I can't leave my children to cry for long, NT or not!

agree with others that maybe finding an interest away from home could be needed.
maybe a college course in schooltime or a pub quiz night
sometimes doing the same old routine gets us stuck in that rut and we need to deviate away from it from time to time

I know it doesn't apply to school holidays, but have you tried catching up on your sleep for an hour or two once you've taken your girls to school?

I am so sorry you are having such a rough time. Not getting enough sleep is the worst torture possible. I do hope it gets better soon. I can't offer any real advice. But do you hve family link in your area I am sure they take younger children.

Saker, We tried a while back putting her back in her bed when she woke. And I did stick to it. every time she woke we took her back to her bed. But this could go on for such a long time, plus she would hit herself really hard and bang her chin/mouth on the bedroom wall and it would bleed.

We really couldn't leave her like that and our Paed agreed with us.

I would have a go at leaving her and putting her back to bed if it wasn't for her hurting herself badly.

I am fairly sure it is not to do with her SN (I know you are not criticising, don't worry!!I am glad of the advice and that somebody is listening to me, thank you) If she just woke in the night and cried lots to come in our bed it may not just be her SN, but she is SO wide awake, she could go out to the park or playarea at 5am in the morning. Which I don't really think is right!!

Yes, I do need to look into a hobby(just gave my gym membership up!! didnt use it, but may join another) Just self confidence is at an all time low, but I do need to do something

I am usually ok tired wise in the mornings, (once I have woken properly!!!) it's the afternoons, horrible, like my eyes have lots of bits in them and headaches also. I know if I go to sleep in the afternoon I will wake up feeling so rotton, like it is 5am again! Don't know if that makes sense?!! Then DH goes straight to sleep at night and I lie there awake!!!!

Did start to fall asleep on the setee this afternoon though and I never do that! Obviously I wasn't allowed to as I get jumped upon by the girls when they saw me !!

buzylizy

never heard of Family link???

Home STart might be able to help as well, give you a bit of a break at least. They have a website which will tell you if in your locality.

Anniebear - fair enough - as I say I find it hard to leave mine crying even when I'm sure they understand - I certainly couldn't leave them banging their heads on the wall. And anyway in the middle of the cold night all you want to do is be horizontal in your own bed - ohh sleep deprivation is the worst, I hope it gets better for your soon.

it is run by Barnardos and ss.
We had one when dd was little. It was great they were just another family but were able to support us and have dd for a certain amount of hours. also overnight as she settled with them It really worked(we were just unlucky that something happened within their family that stopped it) I know people who have been very happy with theirs. Sure there are people on here.
Ss like it as it is one of the "cheap" options.

Oh dear Annie, I haven't read all of this just skimmed, but I'm so sorry to read your first post. I think you should seriously think about getting her something to help her sleep and talk it through in detail with your GP and/or her Paediatrician (cloral hydrate?)
I'm afraid that I know for certain of two families who still have their boys waking in the night, one gets into the parents' bed, the other has to be slept with all night by one of the parents, these boys are 11 and 12. I feel cruel writing that but it is related to SN, not being able to understand, finding it hard to break habits, being used to having needs met etc.
I think others have suggested that, if you can't break it then you try to do something to catch up for yourself at other times. I have to get up every night at the moment, it wasn't always like this, but its not usually for long. But I have to save times during the week when I plan to do NOTHING, that is what I'm doing iyswim. If anyone tries to get me to do something then I just lie and say I've got someone coming round or some other excuse, I don't want to be persuaded to give up that precious time. At the moment I couldn't survive without it.

Annie could you work on getting her to stay in her room? DS1 goers through phases of waking for hours at night (usually 2 but sometimes longer) but because he stays in his room I can get up check on him, deal with anything that needs dealing with, put him back then go and doze until he goes back to sleep. I find it manageable whereas a child in my bed pulling at my face isn't.

We actually use 2 travel barriers, one on top of the other to keep ds1 in his room. I thought he would complain, but he doesn't if they're up he goes to bed (99 time out of 100, the other 1 time he will complain). He doesn't go back to sleep, usually sings and shouts but because we know he's safe it is p[ossible to doze with one ear open.

Hva eyou thought about trying to get a grant for a safespace , there are lots of sleep testimonials in their catalogue!

I agree, if at all possible try to get her to stay in her own room. Putting up barriers or simply closing the door can be a huge prompt to being in your room, staying there, going to sleep. Probably pie in the sky? I hate to suggest it, but what about somewhere you can doze in her room and keep her in there and try to gradually stay less and less time. One very important thing in both DS's and DD's rooms is a chair I can be fairly comfortable on, even just for when they're ill etc.

annie it's a shame about her age, my dd goes to zoe's place now and that's the best thing in the world to me, they have to be under 4 to go there. she goes for two nights once a month, it's only just started but dd loves going there and although i miss her i really do enjoy the break. there's another place for children in manchester but i've not heard of any closer. i'll try to have a look on the net now to see if i can find any for you.

i was terrified at sending dd to overnight care, i couldn't even leave her in the day but i can't believe i'd never tried it before this is the best thing i ever did, we both enjoy the break. once you look around at these places you're mind somehow changes (i cried a bit whilst there but i just get like that sometimes). it really is a god send.

i could only find zoe's place and one called derian house (the manchester one) for respite care in the northwest.

Thanks

we can shut the door at the moment and she can't undo it.

I have tried sitting on her bed before now till she went back to sleep, but then she still woke very early, I couldn't sit then at 4.30/5am as she would have woke Grace up easily at that time in the morning

I should go back to that I suppose, it just means me missing out on so much sleep. Although I know in the long run it would be for the best

DH used to go in her bed in the night every night. Things used to be so much worse than they are now. But gradually she allowed us to put her back to bed without him going in. But her mattress is so horrible for an adult to sleep on (will get a new one this week!!)

In theory I know it all (not being big headed!!), but it is putting it into practise when I am so tired and feeling low

Thank you everyone xxx

Thanks KK

XXX

Thankfully ds isn't too bad these days at sleeping and generally doesn't wake until about 6 - 6.30, but as you know I'm very worried about him at the moment, so I wake up every night at about 4am, sometimes earlier, and can't get back to sleep.

I'm trying to get him to sleep for longer, so try one way or another to keep him in his cot until 7am. I then get up with him and 2 hours later he's ready for his morning nap. Even though I don't feel sleepy, I go back to bed at this point (with ear plugs) and always manage to sleep for at least 45 mins, sometimes an hour and a half. If I didn't do this I think I'd be dead by now lol! So my advice would be for you to set some time aside every morning when you get back from the school run when you know you won't be disturbed, close the curtains, put your pjs back on and have a nap in the mornings, you might be surprised that you can get back to sleep.

I hope you find something to help you soon x

anniebear - when's the last time you went on holiday? even if you can't get away just you and dh sometimes a change of scenery with the whole family can make you relax more and help you to cope with things better.

Oh Anniebear, sorry to hear you are having a bad time. I know how rough it is when you are so tired. I get to the stage when I can think of different stategies to cope but haven't the energy to put them in place!
A Grobag helped here(they come in large sizes too)and we find keeping her in her own room works best for us. DD may be content to listen to a CD of songs or stories and play with toys .....for a while. Ok you don't exactly get much sleep but sort of doze for a bit.
It's taken me a long time to realise that I must get more 'me' time. When DD started at school last year I enrolled in a yoga class which has been great.
Half Term for us too this week. Thinking of you - take care.

thanks.

problem at night also is that we have another 4 year old who sleeps through. Ellie would disturb her if left to cry or play (would cry!)

DH and me had a night away in Nov on our own. We are going to Tenby for a week in June, only because my Mum said she would come with us!!! Wouldn't have bothered on our own...much too stressful!!