Here are some suggested organisations that offer expert advice on SN.
No sleep(10 Posts)
How long can people go on without sleep. DS started sleeping better about three months ago. We didn't trust that it would last, but our bodies have gradually got used to not being so sleep deprived. Now, in the last 2 weeks, same old problem back again. He is waking about 5 times a night.. so we have gone back to the routine which we were advised of by a SN HV who was helping us before... sort of 'controlled crying technique'.. but basically we are so tired that its hard to keep getting up to him. he just stands at he gateand SCREAMS... he wants 'brfast!' 'Noddy book' etc.. in the MIDDLE OF THE BLOODY NIGHT! Constantly! It can take 2 hours to make him go back to sleep.. then he's awake at 5 something.
Dh and I can't do this... we feel worse than we did before we GOT those precious period of more sleep.. having to go back to this! He doesn't want or need anything.. he KNOWS night time is for sleeping.. there is nothing the matter with him that requires night time attention. There is no justification for us being awake half the night and the other two children constantly disturbed. Little DD (6) gets so tired if she doesn't get a good sleep..and so run down. DS1 has to share a room with non-sleeping DS2 He needs his sleep too.. he has CF and needs NOT to run down in order to stay healthy.
They won't give us any respite.. apparently asking for 2 nights per month of DS staying elsewhere (somewhere nice obviously, which is what we were told we would be able to get.. THEY suggested this, then their panel turned us down! Twice!) is 'too high a level of care' to ask for.. since we have never had any kind of respite (if we had asked for and got daycare respite first, we would have been more likely to get the nightcare. We don't need daycare.. he goes to school.. thank God!)
I have just packed DH off to swimming club with all the kids.. he looked so tired and fed up (depressed even?) He is disabled and in chronic/acute pain all the time due to arthtitis. I have an OU tutorial this morning with an exam in two weeks and I am so tired I can hardly face the drive to college.
We love our DS to bits.. but WHY won't he sleep? We discussed Melatonin with the paed last appointment.. but it's not worth it.. he can GET to sleep ok.. just not stay asleep..and I really don't think going down the route of drugging him is the right way to go.
I can't do this no sleep thing again now.. my dad has cancer now and I/we are his main supports.. and there is so much other crap going on that not sleeping is going to be unbearable. How can you do a day shift followed by a night shift followed by a say shift following by a night shift endlessly..? It's not do-able! Something or someone will break down.. THEN they will give us respite I suppose. But I don't WANT to break down.. I don't do things like that.. I cope with stuff.. So whats wrong with me.
Yesterday I put such a stupid comment on here about parents of SN children being 'special too'.. I'm glad it got the contempt it deserved.. who am I trying to kid?
Sorry about all this.. but it has to be said to someone and there is nobody who wants to hear it.. they have been hearing it for too many years now.. it's boring.. and there are no answers.
SJ.....I know exactly how you are feeling.....I am soooooo knackered thanks to J. I fel asleep last night on the sofa at 6.30pm....hubby was watching the kids....I slept solidly til 10 then woke up...crawled the stairs to bed on my hands and knees and can not remember getting undressed to fall into my bed.
At 1.33am J woke up and has been awake since then!!!!
I am surviving on so little sleep....I cant think straight, I have the most huge bags under my eyes, my back hurts, my leg is hurting so much.....scared stiff that the clot I had a few weeks back will reappear.....I just feel I cant cope anymore.....but what else can I do?????
No repsite for us....no family to help....just hubby and I.
All I want to do is crawl upstairs and climb back into my bed. I just want to sleep and then sleep some more, but I cant....hubby is going of to work this morning and I have to watch over J who is currently dragging his quilt down the stairs because he wants to sleep on the sofa....and I am going to join him!!!!!
Go for it Jaysmum.. sleep on the sofa for as long as you can. ((hugs)) I really really feel for you. Have you applied for respite and been turned down? It's not something I have ever wanted to do.. I don't want to farm DS off somewhere.. and I am scared of people not caring for him kindly because he so high maintenance.. but it took us a long time reach the point where we felt we have to ask. And now that option is gone. EVERYONE needs sleep! Or we start to fall apart! I too have various health niggles.. and now stupid things like a twitchy eye which I read on here is down to stress/exhaustion! (Should've known!) I have huge dark cicles under my eyes.. when I wash my make up off I look like a heroin addict! And WHY oh WHY am I trying to study! (I reality it's because we are stuck on disability benefits.. and the only way forward I can see if for me to get a degree and a job that pays well so we can start having at least a little self respect. Honestly I feel like the scum of the earth, the way we have to live!)
Go get your leg checked at ASAP JM. (sorry to nag ) Thanks for replying.
SJ, if you ask social svs for an assessment they can give you direct payments so you find someone to help you in your home if that's what you want. You don't have to farm out your DS. I know how you feel, I wouldn't let my DS go anywhere unfamiliar or without someone who knows him really, really well until about a year ago when he started at an autism-specific Saturday club, and he's 9.5 so it took some time. If you get DPs you can get someone to do whatever you want that helps you and the family deal with DS. I pay someone to look after DD while I take DS swimming one day and trampolining another day. OK, its not respite but it works for us but you could find someone who would take him for little outings or look after him at home while you kip.
I've been given dps as well as i didn't want ds1 going anywhere...
We have had direct payments mentioned to us.. but not really sure how it could work. The support we really need, if we are to have any, is some way of us all getting a bit of undisturbed sleep occasionally. I can't really hire someone to come and take care of him at night.. we live in a very small 6 room (in total) council house.. (we are waiting for a property more suitable for DS.. likely to be a long wait) and there is nowhere else DS can sleep but his own , and DS1's room (in fact sleeping ^anyhere' but his own room, even if we go away for a night anywhere is a big prob as he needs a floor level bed and a big safety gate etc.).. and even if we did have a bigger house and DS (and whoever was looking after him) where to be elsewhere in it, while the rest of us were sleeping, I don't really want DS to get the idea that being awake at night is acceptable. In fact he knows it's not. he understands that we want him to go back to sleep each time he wakes.. he just won't. (Although he WAS doing, for quite a few weeks, for the first time ever, until very recently.)
Anyway, thanks for the suggestions. And excuse my miserable stroppy post of this morning.. I was just feeling really resentful that the sleep deprivation has started again. I know there are worse things, DS is happy and basically healthy so I shouldn't complain. Was going to have an early night tonight.. but DH and I have been making an Easter bonnet for DD from one of the links somebody helpfully posted on here.
Nothing to useful to add I'm afraid , but I hope tonight is better for you.
Ask about a Link worker. I don't know how easy it is to get one, prob depends where you live and how much need and availability there is. I know 2 people who are link workers. They get to know a child and their family and take them to their home for overnights. I know you don't want him being farmed out but this sounds a lot more sensitive/flexible than sticking him in some provision. Might be worth thinking about and getting on a list, could take ages. I'm seeing one of my link worker friends today for swimming so I'll ask her about it. Actually, the two people I know who do it are people I would totally trust and who I respect but I got to know them from other things so it would be hard at first if you didn't know someone.
Thanks Davros. Link is something to consider and we have been waiting for the social worker to re-visit us to discuss this since November! (She is due on Wednesday.. hopefully this appointment won't get cancelled, but last one was due to snow, so not her fault.)
Tbh I don't know which I would worry more about.. the respite which we have been turned down for, which apparently would have been people trained to provide the service, and being paid well, or Link, which I understand to be volunteers who are untrained and obv don't get paid. I kind of feel anyone caring for DH (esp at night!) NEEDS paying! (And training too I suppose..) But those who are not being paid are obv doing it for love, and not money. So may be the better option?
He's poorly now.. another of his many chest ailments.. high temp, fast breathing,a cough.. and I feel so bad that I sit here posting about 'farming him out'! How awful if he was to be poorly in the night one time, and there was no Mummy or Daddy there...
It is a huge adjustment to start letting other people look after them without feeling like you've abandoned them. I have taken it very slowly. We could have sent DS on a holiday with someone who worked with him a couple of years ago but we decided that none of us was ready! I've also just turned down 4 days at a play centre in the hols as he hasn't been there before and I'd hpoed he would have been able to go a few times first but they kept cancelling (death of a member of staff so not their fault). I suppose the best thing to do is pursue Link and see what the person is like. As I said, the two people I know who do it are great and fit the description you gave, doing it for the right reasons but they do have experience. Good luck for Weds.
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