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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

There's just no help,what would you do??

10 replies

That80sgirl · 05/03/2024 17:32

My beautiful lovely son is severely disabled autistic with learning disabilities ,hes doubly incontinent and is completly non verbal, has next to no real understanding of anything, requires 24 hour care.hes 12 now and despite being awarded a 30 day a year respite package two years ago,ive barely been able to use the days as the closest centre to us took him twice overnight and he returned with injuries they couldn't explain and also denied.

Hes now been sourced another place a year later but weve been told if anything goes wrong thats it,there's nothing else, felt very much like put up and shut up situation. The people have came out and met him,they didnt inspire confidence, quite the opposite, they took no notes and said hed be restrained if needed, this is despite me saying he was a mild mannered child.

im so worried what will happen to us, will we be forgotten if this doesn't work.life is so so hard looking after him full time, o thought when he was young it would get easier and id get more help,my dream of a supported living facility once he turns 16/18 seems a dream too as the social worker said that was getting harder too,said the care sector has been near impossible to recruit for since pandemic and services that were reduced were never reinstated.

I cant just give him up to care, theres nowhere qualified experienced for a child like mine,plus despite all the hardship hes mine and i live him with my all.,i shudder to think where and in what state hed end up.at this rate im going to have to find a way to live forever.

Ps @mumsnet dont remove my message to sen

OP posts:
GatherlyGal · 05/03/2024 17:40

It's so hard OP. All those years of austerity have just decimated the provision of services and I agree the pandemic made it even worse.

Once facilities and services are lost they never get re-instated. It must be so frustrating to be offered care when you just know there's no where that can provide it.

I have no help or advice to offer but I really feel your pain. I can only imagine how hard it is knowing you need to look after yourself and get some respite but you can't do so and be confident he'll be looked after.

That80sgirl · 05/03/2024 19:28

@GatherlyGal thank you,yes i don't know what the answer is i just know the current system isn't working, surely someone in government must see and know theres a need to address this deficit

OP posts:
platinumplus · 05/03/2024 19:34

I'm so sorry to hear that you are having such a struggle finding care and support. It is truly diabolical that people are put in this situation when at their most vulnerable.

You might need to think outside the box - is there anyone outside of the family that you trust that you could "employ" to take care of him and few times a week? Or could you advertise for someone privately and then charge it back to the council? I don't know if any of these are feasible - just thinking out loud.

(My ds is also autistic and doesn't have his needs met by the council but not as challenging as your situation. It makes me absolutely livid that they can get away with this.)

That80sgirl · 05/03/2024 20:08

@platinumplus unfortunately my circle of friends has all but diminished due to not being able to leave the house or have anyone over for a quality visit,so theres noone.at the risk of sounding defeated i am,im not normally but ive researched every possible help, ive done the reaching out,ive done the right thing but the people and agencies who are meant to help just aren't, or cant.

OP posts:
DimLlaeth · 05/03/2024 20:12

Can you have a direct payment for respite? Are there teaching assistants at the school who are looking for extra hours?

You could employ them to care for him in his home environment, and build up to you being able to go away overnight. Even if it's just to a family member/cheap airbnb.

It must be so difficult, especially thinking about the future.

jeaux90 · 05/03/2024 20:20

Is he at a special school OP?
Do you at least get any day care provision?

It's so hit and miss in England, literally comes down to where you live.

justasmalltownmum · 05/03/2024 20:30

I know a nurse that works at a hospice. Some of the nurses would work freelance for respite like this. Might be worth reaching out?

PurpleBugz · 05/03/2024 20:45

Go for direct payments and sort your own respite. Or ask for a carer instead of respite. Then it's usually in your own home and you can go out. Start with a couple hours here and there and build up to a night away.

You can also get this put into the EHCP.

I have some carer hours in my boys EHCP. He's not in school as no school can meet needs and it's ruined my life but like you I can see if I don't do it he gets badly treated then restrained when he reacts. I went through a few carers until I found out amazing one. Started just going on trips out all together then playing at home while I got stuff done around the house. Once I trusted carer I was popping it to take my youngest to a toddler group. Now I can leave them for a full 6 hour day and I think I could probably do a night away if I had any friends or energy left left after the last few years.

Lougle · 05/03/2024 20:50

I have no answers for you, but if you want to join a long-standing SN thread so you don't feel quite so alone, PM me. Our threads doesn't appear on the main board and they disappear after 90 days.

Judellie · 05/03/2024 22:03

I don't know if it may be worth looking at HCPT - I know it wold only be for a week but I can't think of anything else to suggest.
I'm not sure if you're allowed to put links on here or not
https://www.hcpt.org.uk/

HCPT

https://www.hcpt.org.uk

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