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

wow, sorry, that was long!!!!

I know just how you feel, dd1 wakes up every night and if we don't go in straight away she wakes ds and dd2 up. She also wakes up between 5-6am every morning. I feel so tired all the time. I am 27 and feel 57. she is loud and noisy from the time she wakes up. I get a headache nearly every day because I am woken up by screaming screecing.I feel like I have had no sleep and been bashed around the head a few times.
strange thing is that Ds is more involved with his CP (ie. is more affected) but its because of DD1's behaviour that she is like this.

how old is Ellie?
I donrt have a special needs child so I know I dont know what it is like.
But, you need to sleep and if that means taking her into your bed to get some sleep, then do it!
If it means getting into bed with her do it!
Everyone will shout me down for this, but she WILL grow out of it! Get a few good nights sleep then you can deal with it better. Plan what to do and stick with it, but whilst you are so tired its impossible!

she is only 4 and a half but it sometimes feels like I have had her 10 and a half years!!

Hopefully she will grow out of it, but with her having SN I have no guarentee she will. She may never sleep through as she gets older, may never be able to get herself up in the morning and go down and watch TV whilst we have a lie in

And yes, I probably would deal with things better if I had a few nights sleep.......did you say few nights sleep?.....what is that!!! lol Coz I don't think I am going to have any for quite few years which is why everything is getting to me, I can't see the light at the end of the tunnel the same as a NT Mum could, I really wish I could

Problem is, to grow 'out of it' means growing out of her special needs

I wish I wish I wish...!!

I know it must seem like its never ending. She will learn to cope with her wakings as she gets older and you will find a way to deal with it too! As I say I have no experience with sn so maybe feeding you a load of bumf!! But want to try and make you feel a little more positive!!
When DH gets up go and have a long soak in the bath and try and get a bit of time to yourself!
There is nothing wrong with feeling how you do! plus there is nothing wrong with asking for help!

Anniebear, sorry you are feeling so exhausted. One of my twin boys has taken to waking early and I have also been feeling really tired lately. However, nothing to what you are going through. I definitely would keep her in bed with you until you feel strong enough to attempt putting her back again and again to her own bed . My 2 boys still come in and I dont have the energy to implement a better system especially as I have to get up for work.I think that when you get no sleep everything seems much worse, every problem seems huge. I have also found that this winter is endless, I seem to have spent hours and hours being awake in the dark and I think that doesnt help either. I have never found myself as glad to see the mornings getting a bit brighter. Not much help, I am sure all the other SN mums will be along soon to boost your spirits. Just wanted to sympathise

Hi, i could have wrote that post myself as this is exactly how i am feeling at the moment. When a child is ill you get on with it cos you know that in two weeks ish they will be better, for us, we dont have that light at the end of the tunnel. I cant give you any advice, cos i wish i knew the answer, but just wanted to let you know (from one haggered, tired and fed up 34yr old to another), that i am thinking of you.

can you get someone to have her for a weekend? your mum or her auntie or someone?
and just spend the weekend sleeping and doing things for you? get a facial, or potter round a bookshop.shop for shoes whatever grabs you.
i really think you need a total break.
it will energise you and give you strength.
can you think of anyone?

anniebear,

Am sorry to read its like this.

Know from speaking to someone who works in respite care that such places are as rare as hen's teeth but have you looked into respite care at all?.

Have you approached your GP?. You as the Mum are bearing the brunt of this.

Sorry am talking off the top of my head here but would like to help if possible.

Thank you !!

Worst thing is, my sister, 3 years older than me got asked if she was over 18 the other week

Although I am quite sure the ladies sight must not have been good!!!!!! lol. But then somebody the other day couldnt belive she was nearly 38!!

I laughed but inside was a little upset. She has had a totally stress free life, couldn't have been anymore stress free if she tried! No problems, one healthy girl whos 11 and caused them no problems (not that I would want her to have any problems or my sister to have a stressed life!)

But then theres me....I got it all, Good old Ang, throw it all at her, she'll cope. Well I can't, and have the the lines and wrinkles to prove it. Only thing I havent got is grey hair, I am sure it is looming though!!

oh anniebear, you sound so fed up.

i'll bet your sister hasn't got the strength and inner resources that you have got.
and i also bet that you don't look as bad as you think you do.
so what about this break? can you think of anyone who will have the kids?

Got told she is a bit too young for respite/over night. But too be honest I don't think I could do it anyway

She is fully aware of who I am, were she is etc. A real Mummy's girl. She would be so upset

My Mum had her for a night back in Nov when we had 1 night away. But it is hard to ask people when you know they will lose a lot of sleep. I know it is only for one night, but they are not getting any younger!

My older Sister wouldn't even have Grace (Ellie's twin Sister) for a night and she sleeps through But apparently her sleeping from 7.15pm to 6am was not enough and my sister would have to get up early..not said in as many words, but that is what was meant

and if there isn't anyone who will take her so that you and dh can have a break together then you leave the girls with dh and you book yourself into a hotel-maybe with some girlfriends and give yourself a break.

i know it's hard to ask your mum but you will have to do it.your mum would rather have one broken night than see her daughter going loopy through lack of sleep and me time.
i'm going to be very bossy now and say'phone her today and ask her'.

Oh anniebear, poor, poor you. The lack of sleep sounds dreadful and contemplating the future when you're having a grim time is always very scary, I think. I think what you are feeling about Ellie is so, so, so normal. (I don't have a child with special needs but have met many parents who do through my previous work.) Are you in touch with a clinical psychologist who specialises in children with special needs? They can be great with sleep issues. Or some social services children with disabilities teams have a specialist behavioural bod whose remit will include helping with sleep. Are you in touch with anyone like that? I think occasionally some outside help with sleep can work wonders and things may well look a LOT brighter if you can find a way to grab a few more zeds. And as for that Ellie girl and light at the end of the tunnel- well, who knows how she will develop but I promise you she WILL learn and develop- her behaviour can and WILL change over time. Things just don't stay the same with kids, no matter what special needs they have. Over time she will give up the behaviours that you're finding hard right now, I'm sure. (Though I expect there'll also be some new irritating habits, just to keep you on your toes!) In the meantime... are you getting enough breaks and time to recover?
Another thought- is it half term in your house? Because the time when I used to see the most shattered, shell-shocked and worried parents was definitely half term... Anecdotal evidence suggests that things will feel a bit better in approx one week if half term hell is a partial factor. Hope things turn around really soon, anniebear.

Not half term yet....2 days to go!!! lol not looking good eh!!!

We see a lady from the complex special needs team, about Ellies behaviour. She has just gone on maternity leave (how dare they!!!) But a collegue was meant to be getting in contact. I must admit, things have improved a little from even 6 months ago.

The girls have started school full time now which makes it a bit embarrasing as I have lots of time to myself. But this sounds mad, I have all that time, spend a lot of it on my own and feel like I am going round the bend with boredom. Can't win eh !!!

Then with all that time, the mind goes into overdrive and if I am not occupied the worries are mulled over again and again

All thsoe with pre schoolers are now going "what?!!! I wish I had all that time!!!"

But I think it's just how I feel at the moment and all the time in the world won't take away Ellie special needs and give me sleep!!! but obviously helps! and the time I do get in the day has helped me.

Thank you all for listening and giving advice, it really does mean a lot to me!

Going off to The Madhouse now!! Yep, thats what its called lol No, not my house, the local play area!!! DH is taking Grace for a swim so I will take Ellie to the play area!!

Have a good day everyone xxx

Oh no- now I'll have got you all worried about half term- doh! Hope you have a lovely day today. And chase the complex special needs woman- she might be able to help a bit with the sleep, either herself or by putting you in touch with someone else. Lots of sleep programmes really do work, it's just that parents get too exhausted to contemplate them. So a bit of help from someone who's rested enough to help and has the resources at their finger tips can be a godsend. Take care. xxx

just to say how sorry you are feeling like this Annie. I totally understamd as ds, aged 5, has SN, tho different from Ellie's. Its just so bloody hard isn't it? xx

i feel like some is sticking pins in my eyes i am so tired. dd2 was screeching from 3am onwards. so kinda know how u feel. vent away!

Anniebear - I do sympathise with you. My son is three and ASD and we have had similar problems. He often wakes in the night completely wired and is very noisy (happily noisy but still loud enough to wake everyone up). He doesn't have enough speech yet to badger us with questions - but if he did I would react in exactly the same way as you. God knows it's bad enough when he's just squealing and saying 'One two THREE' over and over again in my ear. There really is nothing like sleep deprivation to make you feel crap. I look back at my wedding photos (7 years ago) and think, bloody hell,where did that skin go?!

Now, I say this touching wood all over the place, but for the last two weeks DS2 has slept through the night. This is the longest period of unbroken sleep we've had in two years. I feel superstitious even typing it- what's the betting he starts waking up again now!
This is what we've done.
For the last two weeks we've been dressing him in a warm all in one sleepsuit (Vertbaudet do them for children up to age 11!)
We've been very careful about what he eats from about 5pm onwards - as little sugar as possible + none of the things that make him hyper (crisps, grapes).
We've out him in a full sized single bed - so if he wakes we can get into bed with him rather than him coming in with us.
All these things seemed to have lessened the number of times he wakes automatically, and then can't get back to sleep.

Our paed prescribed Melatonin three weeks ago but we haven't tried it yet because he's been sleeping. There is a lot of info about it on this board. I'm not sure about your daughter's condition and whether it would be suitable - but our paed suggested we could try giving it to H if he woke in the middle of the night (before about 3.30am) to get another 4 hours approx of sleep. I know it has different effects on different children though.

My NT son is the same age as your daughter and is up at least once each night (usually saying he's had a bad dream.) This began when he started school. Has Ellie got worse since then? I do wonder sometimes if coping with school during the day means that their brains work overtime at night.

Sorry if none of this is any use! Just wanted to reassure you that there is hope.

Oh

I have a son with As who also doesn't sleep, until recently he had to be checked every couple of hours as if he woke he could be a danger to his brothers. We had him on melatonin for a while, which woked but we had to buy it as have had multiple f ups from Paeds and not even see one for a year. We panicked about givng stuff we couldn't authenticate and stopped, at tyhis point DS will sleep between about 11 an d3, wander and wake poeple for a while and then sleep fitfully but only in my bed. It is an improvement though.

Going without sleep is torure, literally. It prevents you from being rational and finding solutions, thereby creating a vicious circle that it took us years to get out of.

If the sleeping in your bed doesn't disturb you, be grateful for it! Appying 'normal' parenting to SN kids isn't always the most best solution. Try anything else you can too- we got two weeks better sleep by using a sleeping bag, then when that effect wore off we tried something else- anything in desperation isn't it?

I hope you find your solution. XX

Hi, anniebear.

How you doing today? I hope the weekend's started off ok. Not long until monday and you'll have a little peace.

I've only just caught this thread.

We've all been through it, annibear, and can empathise. My son is 7.5 and still doesn't sleep through the night - has only recently started to sleep in his own bed after trying many times unsuccessfully in the past. Still, 3/4 times a night, I take him back to his bed. Hard work and completely draining.

Make the most of your free time. Since my little one started fulltime school - which was only 5 months ago as he couldn't cope with a full day until then - I am somewhat more relaxed. Have time to do as much or as little as I like. I've started going to the gym a few mornings a week which helps lift my mood.

I'm 28 and not feeling so much 48 - no offence to the 40 plus!

We all share the same worries about the future. Not sure how this'll come across, but I try not to think about the future too much. I take things day by day. Obviously, there are sometimes stark reminders of how different your child is and the continual struggle life will be, but, try not to dwell on these things - easier said than done, I know.

Wow, I seemed to have composed a mini essay here myself. Sorry.
I just wanted to tell you I completely related to your post and you're not alone.

Have a great day. Hugs xx

Dear oh dear.

I've just re-read your post and realised, your half term's about to begin! I'm a clever bunny, ain't I?! I do apologise. My little one's had his and returns to school monday.

Ok, so, I guess I should be sending lots of positive vibes your way.

Do you have any plans for the holiday, annibear?
Please keep us informed of all activity that's happening. Would love to know how the week goes for you.

Sending peace and love to you and yours. Will go slap myself very hard now. Tut.
Hugs xx

Oh Anniebear.

So sorry you're having such a tough time of it. I can see why sleep deprivation is used as a form of torture. Ds2(3) is the non-sleeper in our house. He's been wide awake until 2am most of this week, the little monkey.

No advice but lots of sympathy. xxx