To be so fed up - today - of being a parent to a disabled child

May God ease your burdens 🙏❤️

Probably because in a lot of poor countries many disabled children are institutionalised. Or die due to lack of healthcare.

I recently met a Ukranian mum at an autism event. She said that the care, benefits, schools etc for disabled children here are a million times better than what she could access back home before the war. It made me reflect a lot on how much worse things actually could be.

I think your husbands role in this really is key. The implication from your comments is that he doesn't do much of the caring work? If that's correct then I expect thats a major stumbling block for accessing other services. It would be assumed that your husband can step in to give respite. His income might also affect what financial support you are eligible for. How is your relationship?

sorry I didn't mean to make it worse by quoting that. It was insensitive in hindsight.
Just to say I understand and acknowledge how tough it all is. Which is no help at all I know but you are not alone x

Chailey heritage
Treloar

And a few more around the country are day and boarding schools for complex needs from primary to secondary then there are boarding colleges from 19 to 25 age range. They exist but of course a parent needs to want to access those
some offer respite weekends overnight eg the one my ds accessed near London for overnight respite.
Foster carers/shared lives/shared care exist. I never found anyone suitable.

Spelling out to ss that this is needed wanted cam start the process.

Alternatively push for more direct payments hours to employ staff in home. So at some point a parent can eg take a night away and child stays in home environment.

It is not easy.
We don't want to let go...but our kids can adapt surprisingly well when we let them go...

No one will offer...you have to ask. Use the care assessments and ehcp process. From age 14 transition talks begin on annual each reviews and you can start specifying plans like supported living or residential college post 19 or the child or young person needs monthly overnight respite weekends. The sooner you start asking the better.

If is one single parent who let s face it will die at some point then planning for future and for contingency is so important.

I agree. If it was that easy to access then we’d have done it by now. My daughter is 35, up until 2 years ago the only respite option was a flat up 2 flights of stairs- she has mobility problems- or a carer who turned out to be the most unhelpful person I have ever met. At one meeting she actually threw up her hands and said but what am I actually supposed to do with her ie my daughter ! My social worker quickly pointed out that it was hard and this is exactly why her mum - me- needed respite.
Then two years ago a lady near us set up a respite service from her home and she is magical! She provides what everyone should be entitled to, the demand for her services is huge and she is expanding constantly.
I understand the battles with social services but they really should be assessing your daughter, and also should do a carers assessment on you too. We’ve just moved areas and this new council has been pretty helpful, but I do understand the problems, finding a social worker, hoping they don’t move on and then you get a different one. And finding the time and energy to deal with everything, it’s exhausting. X

Oh OP I hear you loud and clear. The lack.of support is shocking in some areas.
Could you apply for a continuing care assessment if you are awake up and down all night and your daughter needs suction ? .It will be a battle but would open the door to free care.
I read something posted by a parent of a child like mine the other day ( PMLD severe medical needs ) . She said ...stop waiting for someone to rescue you. No one is coming .
Man it hit home because it is so true.

Probably a tube. Usually something like a peg tube if a child is unable to eat orally for whatever reason.

My son used to have an NG tube which went through his nose but that's usually more temporary which was the case with my son. There were talks of a more permanent tube but he was able to start eating orally again, he just needs additional nutrients on top due to his bowel not absorbing correctly so he has a central line and nutrition goes directly into his bloodstream.

A friend of mine moved to the caymans as care was much cheaper .. they had a live in local women who was incredible and were able to have weekends away etc and their child was similar needs to yours. Husband was in IT

I just wanted to come on and say that I completely feel what you are saying here. I've got 2 disabled children, I've been crying all morning because the school holidays have been so, so hard and I am just utterly exhausted. Sending you a big hug and lots of solidarity!

Help goes off need ,my son has a rare chromosome disorder, but much like other disabilities the affects of the disorder are very variable from person to person ,it's helped me to know what caused his disabilities but it won't by itself open any other doors although there maybe online groups if there is a specific disorder, which can help put people in touch.

I have a friend whose child lives in residential care but she has Wolf-Hirschhorn Syndrome. So it may be worth, as a pp said, asking for more investigations as to what is the cause of your daughter's physical disabilities, OP, in case it opens doors to more and specific help? Although I realise this just sounds like another chore, probably.

How is flooding the OP's threads with variations of "That's a stupid suggestion" over and over again helpful?

I'm just as guilty of repeating myself now, sorry OP. I will leave x2boys and her super-helpful hectoring.

how are posts from someone with lived experience on the matter not helpful but suggestions for things like nonexistent residential care are?

Many poster posting on these threads just come up with nonsense as they have no idea what the reality is.

And you think posters wittering on about respite and residential schools, are helpful ?

You're not being helpful here, but you carry on.

So sad for you, Op.
How does your daughter survive without eating, if I may ask?
Does she have a tube?
Every minute must be an intense worry for you, Op.

Is there any way where you can resume working more hours in your old job and pay for a carer for those hours. It doesn't give you rest time but the change might be welcome.

Becsuse they are not
If I went on threads, on a subject I knew nothing about and offered well.meaning but utterly useless advice i wouldn't be being helpful either.

I know one but it took years and her child is in a school in a different country of the UK to her hundreds of miles away .

I know you are, because you do it over and over and over and then accuse other posters of not being helpful.

Because i have experience i live it every day so yes I'm going call out the ignorant responses

How do you think yours are? You're always all over these threads, hectoring anybody who dares to post.

I know a few parents who fought for residential setting. I don't know anyone who actually succeeded :(

It's infuriating they are so blase about it too ,i mean residential school, s do exist but it's an extremely hard process not only making the decision to place your child in one but to get the LA to agree to fund and it's usually as a very last resort
The idea that you can just pop your child in one and visit every day as one poster suggested is laughable and incredibly ignorant.

not only a last resort, it's really primarily a non option. Always amazes me that people here think this option even exists. I guess these are posters who have no real live experience of SN and think families like the OP's have options and can access support. People must be living under a rock.