I cant do anything can i?

[Mejustme01]

Ive come to the realisation theres nothing that can actually be done to better my life.We are a family of 5,two parents three kids.my youngest son is severely learning disabled,doubly incontinent, non verbal and a high pitched vocal stimmer,ie screams moans all day long,he doesn't walk throws himself to the floor,hates his wheelchair wont sit in it.he barely sleeps up for hours on end.i barely leave the house,i dont work as im his fulltime carer,his needs are significant and respite that can manage him is harder to come by than a pearl in the sea.

My other two children barely have a life outside school and its rare they get to have both parents together outside the home.they get home from school and we all dont leave the house ever. because its near impossible with my youngest child and so so hard that its pointless and upsetting for everyone.
Theres no one to help hes to much for friends and family,they don't visit anymore as hes too much we dont get invites anymore either.its all just sad.i spend my days sleeping in the morning after he goes to his special school as ive not slept all night, i take antidepressants anxiety tablets but only to numb my thoughts,im not actually depressed just stuck.

I cant just pap him off to residential care before anyone suggest,its not that easy and lots of these places have awful reputations and i love him.i can see me and my husband getting older more tired and ill looking after a grown man changing nappies,washing,feeding him,a man whos mentally 1 years old.im already so so tired,ive absolutely no life, my other children will grow and no doubt be happy to escape, i feel like such a failure. Ive achieved nothing in life that my heart desires for self fulfillment and my chances are now gone. I dont know what i want by posting,i guess just talk about it without making anyone else feel uncomfortable at my uncomfortable life.

I am sorry for the situation you have found yourself in. I cannot know what it is like as I have never experienced this.
Please do not say you have achieved nothing in your life, you have held everything together. I know I could not do it. You are being too hard on yourself. I am sure posters will come along with better advice than me.

Are there any groups local to you of parents in a similar situation? Not comparable but I went through a really tough time with my eldest - her mental health meant we could never go out as a family or have anything like a normal life. However with treatment things have improved which I'm aware isn't an option for you. Fellow mums have got me through some very tricky times. They're the only ones who really understand. Reach out where you can even to find some mum friends who get it. Big hugs xx

Wow that is hard. I can’t imagine…

How old is he now?

One day your son will be bigger and stronger than you. One day you and your DH will be old and frail and looking after your ds won't just be tiring, it will be completely physically impossible. Accept that it might take a while to find the right place, but start looking for residential care now. Not only will you get your life back, you'll have a lot more time and energy for the other DC. I know it's hard, but it's the best thing for you all. Good luck.

Theres are a couple of groups which i tried to attend but not one of them have a child like mine,he ended up disrupting everyone and the looks distress from other parents drove us away,its easy said than done

This Sounds so hard for all of you. Your other DC really can’t live like this, they need experiences and a life outside just your house, activities, something for them. Is there any young carer clubs or home start type support you could access for them?

Find groups for parents, not ones you take the children to. You need to find your tribe of warrior mums to get you through all this zx

This sounds so hard, I hope you manage to work something out.

Make sure school have referred your two other children to young carers, because they can offer a wide range of things. The charity Sibs is also a good one.

I'm not suggesting any of the caring burden does fall on your kids, just they may need some independent support x

This.

Sorry it’s so difficult for you all OP.

It is hard OP. And I have times where I feel things will never improve. When you have DC’s it’s not really something you plan for, you picture your children progressing through to adulthood as you see others doing, you picture them growing up, getting an education, getting a job and leaving home.

I have 2 dc, both have disabilities but my youngest more severely, she is able to toilet by herself but at the age of 19 she’s still has very limited communication and understanding, I still have to do some personal care and she needs 24 hour supervision. I am a single parent and my other dc has had to help out. I try not to put things on my other dc but growing up in a house with a severely autistic sibling it’s hard for it not to affect them.

We have had so many issues with respite, we fight to get hours in place and then there’s no one to cover the hours. We haven’t had respite for almost a year but we are close to securing some through a new agency. Dd will be leaving education in September and so far we have no social care in place. Dd will eventually end up in supported living because I am so exhausted, but this will be done very carefully and she will stay close to home. I can’t keep her with me forever because one day I won’t be around and she needs to learn to rely on others (other than just me).

Some things have got easier as she has got older, other things have got harder. We do have successful days out and even short holidays (uk only), dd has more speech than when she was 10 years old but she still won’t voice feelings or ask for things. She still stims a lot (arm flapping, noises, loud laughing). Some days we can’t leave the house.

I try and take each day as it comes but some days it just feels like there’s no moving forward.

Do find out about registering your other dc as young carers so they can access free days out and carers groups. I wasn’t told about this until my dc was older.

You are doing an amazing job.

Can you get respite care for your son?
You sound like you all desperately need a break

Absolutely. My daughter is 12 and a young carer even though she's not actually her brother's carer but his autism negatively impacts her life so much

This sounds so incredibly tough. It sounds like you have explored respite. I understand that it won’t be easy to find someone who can care for your son, but there are places out there so please keep pursuing respite. You are entitled to an assessment of your son’s needs so if you have not had this, please request this through your disabled children’s needs. They will possible be able to explore support for your children too as well as for you and your son. You really need to push hard for respite for the benefit of your own health and your other children’s. They can explore foster placements, residential settings and carers funded via direct payments. Your other children need to live a life too and you need to build some memories with them even if for now it’s just a few hours once a week, it will really benefit them and in time respite will be identified and you could consider a holiday. Please pursue this for yourself and your children x

My son has been awarded respite for years i can count on one hand the times hes actually gone and that same hand also counts the times hes came back with unexplainable marks or noticeably thinner. Its a hard life with him,but i cannot stand the thought of him being mistreated,it kills me,hes so innocent

You don’t need to put up with this. It’s not what any of you deserve. If the setting is not meeting his needs, this needs escalation and exploring and possibly a different provision. Use the complaints process for your authority if you need to x

Been in similar situation.
Was advised that even half an hour can be the break that you need, for example watching a sitcom for 30 minutes and laughing. This was actually really good advice over time.
After that, I managed to take a community sewing class.
This was done while the child was at school.
It is tough but those few hours were absolute lifelines for me.
another thing that was suggested, which I didn’t do but I sort of regret now, was a photograph a day. Could be of you and your family, or of a view, something on the news, whatever took your fancy. But one photograph, every day, for a year. I think the point is, it proves to you as you do it that you are significant and important and to deserve to have your life recorded by one photograph a day.
As far as respite goes, don’t give up, there are some amazing places out there. You will have to push for them, and probably the best first place of course is your local authority.
I always to ask for rather than finance and that way they would source And assist rather than leaving it all for me to work out (I was just too exhausted and overwhelmed to do that!).
it’s incredibly exhausting, and I am so sorry.
you will adapt, it seems as though it is your entire life now, but at some point you will look back and think it has gone in the blink of an eye. And you do have choices again and the timing in which to implement them.