DSS respite suspended until April

[ElChan03]

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.

25 is so young do you work ? Sounds like a miserable life. My sister Bs father had s child with GDD feotal alcohol syndromes me and behaviour like your ss is displaying he’s now in full time residential care terribly sad

Oh I've had my fair share of injuries from DSS; I have a scar on my stomach where he bit me, and because I have tan skin I have a brown bite mark there. I also got knocked out by him headbutting me the day before my birthday, I had a big purple lump on my head.

DSS dislocated DP's finger a couple of months ago by climbing on him and knocking him over.

It's just territory of being his carers; you accept you get hurt. I asked the social worker for advice for when he bites you and pinches and scratches you because he thinks it's funny.. he does that a lot... and Social worker said to ignore it until he stops. That's like standard advice!

DSD does not have any involvement with his care and therefore doesn't get put into positions where she would get hurt. I wouldn't let it happen. She's also scared of him, so doesn't go anywhere near him anyway.

So all that being said, I'm not sure where the line is? When he breaks a bone or knocks out some teeth I suppose? But then it wouldn't be his fault so I imagine even that would be excused.

I make sure DSD gets lots of time with her Dad, I will look after DSS or on respite weekends I will disappear so they have quality time, or if she wants me there I try and plan fun things. We normally have her friends to stay those weekends so she gets to have normal teenager (12yo) time to have sleepovers. I encourage it a lot.

I'm not sure how DP feels about residential care, I think he would feel it's failing his son. Which is understandable. I don't even know how to broach the subject of it with him, it makes me feel like a selfish twat for even suggesting it. How could I possibly suggest it when I'm not even DSS mum.

I do agree we are approaching breaking point; even if that breaking point is me and my stupid feelings.

I am with solasum, your DP should be considering residential care. The current situation doesn't sound viable for himself and dd, let alone the ds. It also sounds very hard for you. It doesn't sound like an environment were you could have a dc. It isn't a situation were anyone is thriving.

I work full time; I pay the lions share of bills and cover the extras for clothes and school trips and activities etc. DP works 10 hours pw as he is the primary carer for dss so needs to be available to care for him. His job is at a special needs educational farm for young adults, he really enjoys that. It's sad because DSS couldn't even do anything like that at all.

I 100% agree with your mum OP.
You are so so young..You don't deserve it...Your DP is a VERY selfish men for keeping you with him..In a loving relationships partners think about each other as well as children. He should already be thinking that you are a young, childless women and one day you are likely to want a family of your own.

You need to ABSOLUTELY talk to him about what your mom has said.

elchan the more you write the more I agree with your mother. This is not a good way to live your life, your DP needs to look at the whole family not just his own feelings and make decisions for the whole family.

I have no idea how to talk about it. I've just been blindly putting the family first above myself because that's what you're supposed to do with another person's children. You put them first.

I just keep going and going.

Their mother has near enough abandoned them; how would I make them feel if I did as well?

I'm full of admiration for you op, but I think the pp and your mum are right. You can't be expected to sacrifice such fundamental parts of your life.

On a purely practical level while you figure that out, in addition to the headphones, I recommend a white noise machine. Turned up loud enough they will block out anything but bizarrely don't prevent you from, and in fact make easier, falling / staying asleep. We got one to help our dd sleep and I soon realised that I need it more than her. In the early days it really helped me to sleep if she was awake / shouting but being cared for by my partner. Without it, like you, I just could not block out the sounds enough to switch off. My dd slept through the kitchen units being ripped from the walls in the room below with it turned up extra loud. If the headphones have kind of worked, maybe try a machine as well. Recordings of white noise from YouTube or wherever are (allegedly) not the same!

ElChan I am in AWE of you. You amazing woman.

Reading this thread, I think you really need to talk to your DP. It sounds like you are moving heaven and earth to facilitate his idea of what his family should be like - and don't get me wrong, it's a lovely idea of a family and I totally get why he would want his son at home.

But thinking about it rationally, is this a happy and sustainable family? You're burnt out. He's burnt out. It sounds like DSS is not thriving without the respite care and, as the full time responsibility takes its toll on you both, it will get harder for everyone.

Can you talk to DP about what a family life might feel like with DSS in residential care? Maybe you can explore some options and see if there's a way to get what he wants from his family (which presumably isn't really what he's getting now) in a way which works better for everyone.

I'm not pretending this will be an easy conversation, but I think you have every right in the world to ask him to have it.

Once again - you are amazing.

Thank you Mikesh909; I'll look into it. I've heard lots of things about white noise but when I listened to some on spotify I found it bizarre. So I'll give it another go.

I have found in my desperation that playing classicfm to dss at night seems to help him settle a bit more; however you never know with him when party time is.

Thank you for all the words of wisdom and support. I guess I have an awful lot to think about on top of everything else to think about lol

I don't feel amazing! I feel like a shithead.
But thank you!

I don't even know how to start this conversation? Any ideas?

Just one more suggestion to add to the mix. If DSS is going to end up in residential care eventually, wouldnt it be better to get make that decision sooner than later, so that he is settled in and the transition is behind him while he is still young. I dont have experience with this, but my gut would say it is better to get him settled before the puberty hormones hit, than during it.

The social worker from the impression I have from conversations with her, is very school orientated. DSS does well in the school.

I know I've said how challenging he is, but apparently, this is a walk in the park in comparison to how he used to be at 4/5. DP said the other day when we crying together, that DSS used to have 3 hour long meltdowns and he would go to work battered and bruised.

DSS is very happy now for the most part. But him being happy is just as intense as him being unhappy.

The school have lots of teaching assistants and plans and things in place to support him to do activities. When he's at respite there is support to do activities. He thrives in those environments.

It's just us at home that struggle along, our home doesn't have the space or equipment for him to be as active here. There's usually only dp or me with him; when there's two of us it's still a fight to even get him to go to the park for a walk to burn some of his energy.

However as I started to say before, social worker only cares about how he gets on at school because at school he is doing well.

I might ask questions to Start," I've been wondering about the future, what do you see it looking like DP, next year, three years, 5years" Try and get him to give you detail. Does he see residential care for dss? Dc with you? Etc. If you have similar ideas for the future then you can talk together about how to get there.
If he isn't mentioning anything that is important to you then mention the things that are important to you and what you see as blocks to them.
Ask him what his longer term plans for dss are if he doesn't raise it himself. If his timescales don't work for you be clear about this.
He is very lucky to have you.

I'd ask the sw to start the ball rolling talking about residential care, it won't happen overnight and you need to know what the options are.

A EP recently suggested classic fm or talk radio on in the background to help sleep, it's enough to distract you and get thoughts out of your head but not enough to engage you.

Have you looked a cannabis oil ? Lots of people have used it to calm there children down, it's non addictive and has the 'high' taken out so it's legal.

The social worker won't care about home unless you make them. If you are clear that as a family you have reached the end of being able to care for him at home social worker will start to care.

I work at the same type of school as your dss attends. Go and speak to the Teaching assistants - we take kids for respite all the time, we have them after school, in the holidays, overnight etc. Obviously you have to pay for that but could your respite allowance be used?

ElChan - my younger DS is now in a residential school. It has been life-changing for all of us but most of all, him. He has a team around him and that sounds what you are missing now. Two parents - and yes, I am counting you rather than his Mum - are not enough. You see, I can say that because I gave my all and it wasn't enough.

It is time to sit your DH down and say this is damaging for you all. There are better ways to do this and that will be the right residential placement until DSS is 19. Sadly, you might have to fight for what your DSS needs but it will be worth it. You mightn't find a school in your county but there will be the right one nationally - it is a case of changing where and what you are looking at.

Yes I think lakeshore is right to say start with questions. If you can, find a time when things are on (relatively speaking) more of an even keel e.g. after you've had a decent night's sleep.

I would explain to DP that you see this as the start of a conversation, not that he/you need to come up with all the answers straight away. Also that it is important, in order for you to get through this exceptionally difficult time, to be able to see forward to a time when you (ie everyone in your family) has a bit more control over their lives.

It will probably help if you can believe these things too. I usually find the most productive conversations with DH are when we can both approach it as a process, rather than trying to get to a particular solution.

I think you are 100% entitled to some answers from your DP, he can't expect you to spend an indefinite amount of your life on hold while he chases the dream of a family that may never be possible. But it would be understandable for him to feel very conflicted and guilty about any changes (especially if he himself wants them, a little bit) so in order to have a positive talk he might need a bit of encouragement and time to accept this.

Again. You really are amazing.

you don't sound selfish for suggesting, at least a conversation about, residential care. It would not only be you whose life would be impacted - your dsd, who I presume is equally important to her df as his son, should also have a voice speaking up for her needs. Also from what you've said, the various professional settings that your dss is in seem better equipped (physically and psychologically speaking) to meet his needs. It's not selfish to consider how best that can happen.

I get that your dh wants to keep his family together and that anything other than keeping his son at home feels like failure but the world is not ideal, the realities of the situation must be considered - your needs, your dsd's and his own are also important and are not trumped by one family member's, however severely they are affected by their condition.

It's a hard conversation to start. I like the idea of getting him to think where he sees things a year / three years / ten years from now...

Wow what lovely advice.

@Lakeshoreliving @freiasbathtub and @mikesh909 thank you for these suggestions. I'm tentatively going to give it a go tonight. Thank you for some idea of how to do it. Will let you know how it goes. Also thank you for helping me not to feel so guilty and selfish and crappy about it.

@chickensarethebest thank you for sharing your experience and I will be sure to mention this to dp as an example when he has had some time to think about it. How old is your ds? Dss is 11 atm

As for cannabis oil... I cannot see dp ever being on board with that. He's ex army so completely anti drugs.

But definitely seeing the social worker tomorrow. So chat tonight and then battle tomorrow.

Oh and the social worker asked at the school if any teaching assistants would be able to help out with some respite in the holidays. Money isn't an issue as there is a respite money paid by council to pay for existing lady. But no one has come back to us about it at all.

Ask the TAs yourself. Seriously go in and speak to the ones you have a relationship with.

Mums text/message us on FB when they need help. It’s quicker than going through official channels!

@onemorecakeplease I shall get dp on the case tomorrow. No harm in trying!

I'm with your mum OP. God, you're so, so young to be taking on all of this and all that it means for your relationship and your future. And you're working and paying for most stuff too.