Respite, is it worth it? wwyd?

[devientenigma]

A bit of a reluctant post, feeling like I don't belong here anymore, having had posts unanswered and feeling that other posters were speaking over me etc

Anyway we have managed to -con- -trick- -force- get DS in respite. We have left him a nervous wreck, very upset inwardly but visible to us and extremely anxious. He will attack staff and kids whilst there and come back unmanagable, aggressive etc. He won't sleep for days and won't go back out for months. He has reluctantly gone now and then for the last few years so not needing to adjust etc Is it worth continuing or should we call it a day?

TIA

I did read your posts earlier but have no experience of being in your situation so didn't reply.

With regards to respite, It depends what you get out of it. Do you think this time benefits you, Is it worth it for you?

What age is he?
Would it help to have a break and then try again at a later date?
Are there any other places he could go, or is shared care an option?
When he does go, is the overall impact on your lives worth it?
Do you use the time to do things you can't do when he is there? Take a holiday?

Or are you stressed and worried the whole time?

I use respite, but only for 2 nights in a row, at a time. So far that has been ok.

I suppose some other things to consider are, what are the staff like? Does he get a 1-1? (sounds like he needs it). Do they consider the group dynamics and what other clients will be there when they are deciding dates?

HTH.

Thanks Dev for looking at my other posts. I will try and reply to all your and emme's Q's. He's 11 nearly 12. We have just thought about having a long break from respite and then retry, however he is also out of school, has been for 3 years and it's the only break I get. Apart from family based care, which DH doesn't want thats it. I'm unsure about the impact it has on us but we do get things done in the house that we can't do when he is around. Haven't attempted to holiday lol Yes we stress and worry whilst on auto pilot doing other stuff.

The staff don't consider the group dynamics or his total needs but it is an impossibility to get things perfect for him. He is 2-1 which they try to divide one between him and another. They have done a new risk assessment on him which I post about as we feel it's a bit drastic but no one replied. Thanks though for the Q's they will certainly help us work through it.

We've conveniently blanked suggestions of respite because we're concerned about exactly this sort of reaction. I can' work out how respite from DS1 would give us a true break when we'd spend the next week picking up the pieces.

No direct experience of your situation, but i'd be directly weighing up pros and cons. Given your DS's reaction on return, are you even able to appreciate and make the most of the time with him off your hands? Even if the results are ambivalent for him, are they any good for you? If not, then that's your question answered - about this placement at least. It's not like you haven't given it your best shot.

DS1 goes to a very good respite centre once a week, it is a lifesaver.

I think they key is to have somewhere that you know will manage behaviours. DS1 isn't too tricky at the moment (he has his moments) but the most challenging children in the area do attend for regular short breaks and they cope very well, and provide the families with much needed rest breaks. If children need 2:1 at all time, they tend to get it, if they need big burly male 2:1 at all times they tend to get it. The LA is well aware that if local respite doesn't work they are looking at resi, so it is in their interests to make it work.

I have found in ds1's case respite works providing it is routine. They tried to give us a longer break once a year but it was a disaster for ds1 as he couldn't cope with being there for the 'wrong' day, so I told them not to bother and traded it for something else.

It took ds1 a while to settle, but now he loves it. Recently he had to come home because he was ill and he was gutted to be at home the 'wrong' night. He appears to look forward to his time there as he knows they will take him out and that there will be lots of adult company for him (he isn't as interested in his peers).

What if respite carers came to your place, and you escaped, would it be easier? You'd have to do direct payments probably, and might get less hours for your budget.

we also have misgivings about respite but have stuck with it because we dont want to be left with no other options for a break. I think in your case having read some of your other threads you must have a break. if you stop respite your ds will go out even less and this in turn keeps you in the house permanently. the other option of having a carer in the home could also be explored as this could also give you more freedom. In your shoes i would probably keep the respite for now and start trying to find and get funding for a home carer. once you know this will work and you find the right person or people you could possibly drop respite if it is still something you want. a few years ago ds hardly ever left the house and consequently neither did we. with him starting antic anxiety medication made a big impact on his aggression and anxiety, is this something you would consider?

agree with cansu and jimjams. in your situation you absolutely have to have the break. if you say you don't want respite then you are basically making the authorities' lives easier - they should be making respite work for DS and you. Agree that it could be worth considering home carers, as long as it's with a view to you leaving DS with them.

The respite place we have is good and some members of staff have children with special needs, including autism. However sometimes they get it wrong but with good intentions. For example a couple of times they took ds on day trips to 'big' places, eg. a sea life centre. When they kindly sent us some pics, he looked on the verge of tears. We explained nicely that we felt activities like this were too much for him and that going to respite was in itself, enough of an experience! It takes him a lot of transitioning to be comfortable in new situations.
Does he know anyone else that goes to respite and could he go at the same time? In a local day centre for adults with learning difficulties, the people go to respite with their friends, making it much more enjoyable all round.
But yes, as other people said, they should be trying harder, and a reminder of how much it would cost them if your son was in residential care, sometimes gives them the boot up the arse they need.
We actually started with shared care which we thought was a more 'gentle' introduction to respite, in a family setting. And all of us getting to know them slowly first. So its a bit like having a sleepover at an aunties house!
And when he does go and I feel crap and sad, I tell myself this is helping him to further his independence.
Good luck.

I can't say much about this area as I have never been offered anything but my vision if I was in a position to benefit from respite would probably be for a slow introduction/transition into shared care in someones home where the routine would be similar to at home and my DS would feel confident and settled there and be with a small number of trusted people, etc...maybe thats just my imaginary ideal world hope and I don't know how it would realistically translate.

I would think that whatever the environment was going to be...maybe I'd be staying there and getting familiar with the place with my DS with a view to him eventually staying without me, having built his confidence and settling into the routine of the place, etc

I don't know enough though so am limited in being of much help to you.
From your other posts though I can see that respite is definitely something you must have and really need so please don't give up, maybe have a meeting to discuss what options you have in adjusting how it's delivered, etc

(((((HUGS)))))...I sometimes feel I shouldn't be here either/don't get replies and feel like I'm a thread killer or something.....don't worry, I think it's often more to do with people not knowing how to respond or whatever....not personal xxx