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DSS respite suspended until April

(212 Posts)
ElChan03 Fri 23-Feb-18 17:03:18

Not really for advice but to stop myself crying. DSS respite provider has been suspended until 4th of April due to a bureaucratic fuck up by Ofsted and now we have dss every weekend and every night until 6th of April at least. That means going 8 weeks without respite and includes Easter holidays. I haven't slept more than 4 hours in a night since 12th feb.... I was really really looking forward to a proper sleep tonight.
I don't even know what I'm going to be like by April!!!
We've spoke to the social worker who said she'll look into it. Don't feel too hopeful, especially since a new respite person would take months to settle him into if we got it.

Ahhh! Sorry for second rant in less than a week.

TempusEejit Fri 23-Feb-18 17:10:36

No advice to give but flowers

ElChan03 Fri 23-Feb-18 17:13:49

Very much appreciated all the same! I wrote a really angry complaint letter to Ofsted but I doubt it will change much.

TempusEejit Fri 23-Feb-18 17:24:22

I guess there's no one/nowhere you can go and stay to get away from it all for a bit?(sorry if that's a "duh of course I've thought of that" question, sometimes people could get away but misplaced guilt stops them)

ElChan03 Fri 23-Feb-18 17:31:14

Not in the local area but if the need drives me I may spend a weekend off at my mum's... whose 2hr drive away. But all well and good me running away but then dp is left to fend for himself and I know how hard school holidays are for him with the respite.... god knows what it will be like without.

TempusEejit Fri 23-Feb-18 17:47:14

This is where I'm going to sound like a heartless cow but your role in your relationship isn't to provide support to DP at the expense of your own health. This is his situation to deal with, not yours, one weekend between now and the 6th April so you can deal with your sleep deprivation is still you being a good partner to him. In fact I would consider him utterly selfish if he didn't encourage you to go see your mum. If you and your DP separated because you cracked under the strain he'd have no choice but to fend for himself 24/7. Honestly, don't put yourself through this when you have options.

NorthernSpirit Fri 23-Feb-18 17:51:59

Oh poor you, sending my best wishes.

This is tough as you sound caring and want to do the best thing. However, that shouldn’t come at the price of your own health and well-being. Your OH should step up. You need to be selfish and look after yourself. Go to your mums and have some you time.

I regularly have to take myself out of the DSC situation (and we only have them EOW and half holidays). Sometimes I just need me time.

Sirzy Fri 23-Feb-18 17:53:36

Do you have any other family/friends who could step in for even a few hours?

Or can you afford to offer to pay someone from his school to help during the holidays?

ElChan03 Fri 23-Feb-18 17:59:03

Thank you both! I think being told it's ok to do that makes me feel so much better about actually doing it.
Dp is as stepped up as he can get, very hands on dad and I work 9-6 So for the most part I only help with morning and bed time routine. Dp and dsd are also capable of sleeping through the shrieking and banging and thumping and screaming. I wake up as soon as dss does and most nights that's 3am lol. I tried ear plugs but they caused issues with ear wax and I ended up with ear infections. So I just try and sleep as much as I can or go for walks in the dark.

ElChan03 Fri 23-Feb-18 18:04:45

The respite is paid for by social services. DSS has 72 nights a year. The lady is amazing and it works really well. But Ofsted have laid down a suspension due this cock up. Social worker recommended other places to try but I don't know how long it would take or how well dss would take to it as this respite is his routine.
Since ew told dp she couldn't cope with dss. It's been dp and me only, he's got such high needs I wouldn't want to dump a friend into it without any experience. They would never forgive us.

Twogoround Sun 25-Feb-18 09:30:54

Well i think you need to going on the social services about this . That you can't cope . Go to dr s.
Have you tried driving your car some where sns sleeping in that . Or just sleepingcat a freinds.
If you have not already try the special needs board.

EggysMom Sun 25-Feb-18 09:37:17

72 nights is a very high level of respite, for comparison our 8yo son has been awarded a DP equivalent to just 4 nights per year, so we'll only get a break once every three months.

Your son obviously has exceptionally high needs. I would suggest that you immediately start working with another respite provider and then, going forwards, alternate your son's respite between the two settings. That way if one cannot accommodate for any reason, you have the second placement to approach.

I'm not sure it's entirely fair for your son's mother to abdicate all responsibility as she "cannot cope". What would happen if your DP couldn't cope either? We have to cope, we have no choice. So unless she has mental illness or the child is endangering other children in her care, I'd be encouraging her to step up and take some of the responsibility.

gamerchick Sun 25-Feb-18 09:41:08

Why does his mother just get to opt out and you don’t?

MycatsaPirate Sun 25-Feb-18 12:52:12

My godson has severe disabilities and he also wakes at night and makes a lot of noise. His room has been soundproofed now so it doesn't disturb the neighbours and his siblings. I know his mum does get up but normally just checks he's ok and then goes back to bed.

Is this something that you could look into? I think social services or the family fund helped out with it.

Also look to see if the Family Fund would cover the cost of some respite until this is sorted.

It's bloody hard work having a child with SN and you won't be an effective parent if you are continually sleep deprived.

ElChan03 Sun 25-Feb-18 17:51:37

Oh wow some great advice thanks all. I agree with the idea of having a back up respite in place. Social worker suggested a board to apply for respite placements, dp has contacted them so have to see what happens there.
He does have very challenging needs, dss is 11 with low functioning autism, global development delay and he is blind. I would say his mental age is roughly 2 but he is non verbal and at times can be highly aggressive. 72 nights is as much as the family are allowed and this was put in place when dp and exw were together so it's been routine for dss for 6 years.

We've fought really hard and got dss a safe space for nights now. Which is a huge relief as he throws himself around and jumps and bounces and when it was just a bed in his room we would have to get up as soon as he was awake to make sure he was safe.
It doesn't do anything for the noise unfortunately.
I took some videos and sent them to ot and social worker when we were fighting for the safe space so they know how active and loud he is.
I'm managing on the 4 hours atm haven't gone crazy yet lol on Saturday night I got 5!

The situation with dss mum is fairly complicated but her helping is not an option at all.

Bananasinpyjamas11 Sun 25-Feb-18 18:18:57

Just to say I’m sorry that sounds very frustrating. You have complained and sought action, keep at it if you can. It’s so unfair respite isn’t a luxury, it’s a lifeline.

Maybe as much as you can turn to family and friends - for a good rant or practical help. Be nice to yourself and get your DP to do extra, even take annual leave. It shouldn’t all fall on your shoulders.

flowers

pinkhorse Sun 25-Feb-18 18:21:19

You sound like a lovely kind patient lady hmmthanks

ElChan03 Sun 25-Feb-18 18:26:32

Sometimes it feels like we can't catch a break and there's always drama or something that needs to be resolved with either the exw, dss or dsd.
It's hard for all of us as dp is his primary carer and does the lions share of care, I help when I'm home. But I'm the one that finds it more difficult to sleep with the noise level and I go to work full time.
Just hoping we get it sorted soon or I can see both of us being tired and worn out.
I spoke to my mum and she said she will pay for a cheap hotel room if I get desperate and can't wait until a weekend off to see her.

Bananasinpyjamas11 Mon 26-Feb-18 00:28:38

Do look after yourselves. Try and go somewhere one night a week to get a full nights sleep, for your healths sake. DSS sounds very high needs and like he needs round the clock intense care. My heart goes out to you all!

Is there any kind of grant to get a safer room / safer bed etc or medical help with his sleep? Sounds like the dual respite and another real review of his needs to up your support. I know of one person who has her son four days a week and three he is in full time care, and it sounds like he is not as high needs as your DSS. It works well for them. Maybe press the social worker to say that he’s only one official parent and guardian - even though you do so much, it might raise his priority needs up the list.

ElChan03 Mon 26-Feb-18 02:25:16

Thanks Bananas.
Just to clarify a safe space is a zipped in bed in a box. I've attached a picture. He has one in place now. It took a long time to fight for but he's had it for almost a year now. He also is on Melatonin for sleep but it doesn't seem to last the whole night. He's a awake now and bouncing.

Dp is very stoic and because he manages so well it's sometimes hard to show social worker how hard it is. Dp doesn't complain or ask for help, it's only since I've been on the scene that I've pushed for more and been more vocal at meetings and reviews. Otherwise dp would just plod along until he couldn't plod any more.
He really is amazing man and I admire his strength... and ability to sleep through this noise lol. Dsd is soundo too.

ElChan03 Mon 26-Feb-18 12:20:22

Social worker is actually being proactive for a change and has contacted the school if any staff are able to provide aome respite in the holidays and has investigated other options. Fingers crossed!!

TempusEejit Mon 26-Feb-18 12:37:21

Good luck ElChan and please don't feel guilty if you do need to get away for some rest, sounds like you're already doing more than most would.

ElChan03 Mon 26-Feb-18 14:46:50

Thank you. We'll see how I go. I'm working next weekend but I will keep you all updated.... Fingers crossed we get some help and don't burn out

ElChan03 Tue 06-Mar-18 18:58:47

Starting to struggle. I'm so tired. What with all the snow. I wrote a long email to social worker but she doesn't seem to care.
Feel pretty tearful today but I don't know whether that's due to being overtired.

TempusEejit Tue 06-Mar-18 19:36:26

You poor thing. Please, please think about going to see your mum flowers

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