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

[Montereyjaaack]

I’ve NC for this. Sorry this is very long.

i adore my DD. She’s so brilliant in every way she can be. But I’m so utterly fed up of lack of sleep, lack of support and lack of money.
Im also so sick and tired of the shit I see from people online whinging about disabled people and benefits and “free” cars etc.

I want nothing more than for my daughter to be safe and happy. I’m sick of worrying about her future. I’m sick of services stopping or not being available in the first place. I’m sick of not being able to have a proper income or a satisfying job.

Im terrified of what will come if her when I die. I’m already 50 and she’s not yet 10. She’s non-verbal, can’t use ANY communication systems (PECs, signing or technology). She can’t walk. She can’t stand. She can’t eat.

Shes probably autistic but is just in a waiting list and the assessment probably won’t mean much because they admit they don’t know how to assess her.

She has no respite. So-called carers provided by the council for 6 hours a week are beyond useless and more of a burden to me than she is.

Everything is a struggle - everything. She doesn’t sleep more than 5 hours and makes so much noise when she wakes. There are safety issues around her inability to swallow safely so someone had to keep an eye of actually intervene to suction her during the night to add to the joy.

I’ve had to wash her bedclothes every day (plus clothes etc) this past week because she had iron medication (as she’s anaemic) and flooded her pads with diahorrea that burst into her bed, her duvet etc.

No family help (I have a husband but less said about that the better) as family are older/in different countries.

The hospice she received support and respite overnight a couple of times a year has discharged her as she’s apparently lucky she isn’t likely to die before18. So Jo overnight care ever unless something magical happens to the UK economy.

There are no actual respite services in this county. I couldn’t afford private respite even if it did exist as I work 10 hours a week in term time and only started that before Christmas last year so haven’t been able to save. And then have carer’s allowance and child benefit.

She loves being out and about- so I have to have a WAV from Motability- so all the mobility component of DLA goes on that . Then petrol - already £200 over summer holidays. We are limited as to where we can go because she’s doubly incontinent so very very limited time out and where there are changing facilities to hoist her.

I am generally a cheerful person but now in perimenopause so I’m just reaching my fucking breaking point with a period that is so heavy I feel faint all the time but still have to go and go and go because she’s so limited - she can’t play with toys or use a tablet because of how her physical limitations affect her.

I am so sick of trying to stay afloat. I used to have a fairly well paid job. I used to have time to myself. But this is it until we are both in wheelchairs or care or something equally shit.

It probably isn’t an AIBU but am I unreasonable for feeling this is it? It doesn’t get better does it?

please just stay away from posts like this with your completely unhelpful drivel. It's not helpful to send good wishes in the name of religion. It's ignorant and rude what you did. Just find some other threads to post on. Sorted!

There needs to be a way of putting pressure on LA to provide help. MP? Local media?

Does your child's disability have a voluntary association connected with it who might be able to help?

There is an organisation called Contact which gives advice, also Family Fund for grants for respite etc. Try looking these up. Contact used to be called Contact a Family so you might find it under that.

There are so many families in the same situation. If you read the news, you will see how disabled people and their carers are often vilified and people think we are rolling in it with our free cars and supposedly raking more money in than many who genuinely work. Nobody gives a shit and there is no money. The government is still brewing over plans to reduce disability benefits. Next due to be in line for the ax is statutory school support for children with EHCPs. MPs won't help. Most Tory MPs are in favour of tightening welfare support and Labour sadly is a similar story. Voluntary organisations do not have the needs to find support for such a complex child. The UK is a really shit and bad place for families like the OP. There just isn't anything to make a real difference (I have 2 disabled children myself, one with very complex needs). Sorry if I sound negative but it's the reality.

I am a retired social worker. I never gave up on any families and fought tooth and nail to get help for them. I was not popular with the LA as you can imagine.
I used to tell clients their entitlements and suggest a solicitor letter. This often worked.

The LA can only provide help that's available i do get, respite but It took years and by the sounds of it the Op,s child also has complex medical issues which would require someone with the correct training to care for her daughter
I know loads of families that even though they have been granted direct payments they can't find a suitable PA .

@Papyrophile - not going to quote you. You absolute disgrace.

This isn’t for now @Montereyjaaack as you have enough on your plate. But at some point, make a note of your local authority out of hours duty social worker phone number. You never know when you may be at complete breaking point and need it. If you called 999 for yourself and need to go to hospital, the NHS have a duty to find a placement for your daughter (unfortunately, we were told that probably means he ends up in hospital as well) but at least that’s one contingency you can cross off the list.

As others have said, 6 hours a week really is no where near enough though. I know you won’t want to do it, but you have to stress how you really feel to social services. They will give you a personal budget for Direct payments because it is easy for them. You won’t have to do payroll yourself as a company will do it all for you, you just provide them with how many hours every month your carer/carers have done. It’s daunting thinking how you would get your own Personal assistant/s, but again your LA will have a local provider that can help you with advertising etc. Even if it means the PA only sits and plays with your daughter in the house, you could at least get some sleep at the same time.

I'm fine it's others who need to move on, seriously I didn't know my 1 comment of good intention will blow up here, it's ridiculous

Maybe the ones who are triggered should just move on, because that's not helpful either

Duh at what point did I preach or force it upon anyone? You guys are being ridiculous

But you are doing now ,you are not respecting that other people have different beliefs to yourself and you are being rude to parents of disabled children
Religion is always a contentious issue
You just Nedd to leave it now.

You obviously can't read or understand and just like the other few, you have jumped on to bash me. I said what I said how others perceive it is not my problem

Sounds absolutely exhausting OP. No practical advice as no experience of this, but sending hugs and strength.

OP I wish you all the best❤️ hopefully you can get some help and support and some restful sleeps......whilst you appreciate the sentiments of well wishers others are just taking it out of context.
I won't be replying back to ridiculous comments again.

The issue isn’t you having faith, it’s that you keep coming back to fuel the fire. Leave it.

You’re speaking to a group of people who experience real hardship, every day. Some of whom have to face their children having significantly reduced life expectancy, and most of whom have to deal with the fact their kids can’t do the things everyone else’s can.

They’re told, regularly, that “God gives his hardest battles to his strongest soldiers,” which is great. But I didn’t sign up for war. As much as everyone loves their kids, they’d prefer not to have to battle.

You’ve had that context given to you already. But that’s why you’re facing the backlash.

All you had to do was say “sorry, didn’t mean it like that, my bad.” Or similar. And shut up.

It’s not about how people perceive your message. You’re speaking to a very vulnerable, often very tired group of people, who spend a lot of time being condescended. Know that, and back away slowly. Or quickly 😂.

Safxxx ... I think you need to realise how interventions like this can come across.

If any God has the power to ease the OP's burdens then they have chosen not to do so up till now. And any wishing from you is not going to change that.

Sometimes these simplistic religious interventions can come across as patronising and complacent.

I dealt with these when my OH was dying and I can assure you they were unhelpful.

If you believe that a prayer from you might help then by all means do this. But do it privately.

multiple people asked you to stop. Your are obviously one of the many religious nutcases around. Many of us here live in the real world having to deal with the realities of bringing up a disabled child. If you wanna believe in sky gods who impregnate virgins and other nonsense and it makes happy then this is fab

But please don't abuse posts of parents in very difficult situations as an excuse to preach this utter nonsense. people ask you to stop. Can't you be a bit respectful?

I thought of reporting your post but maybe should let it stand, just so everyone else can see that repulsive human beings like you exist. You obviously don't value living in a civilised country that protects its most vulnerable.

I really feel for you OP. I have a severely disabled DS myself now in his mid-20s, and have seen services steadily decline over his lifetime. I fear for his future and can only hope for him that as a country we become more enlightened with time. BTW there is nothing wrong with this (very rich) country's economy, just that our government chooses to prioritise other things over vulnerable people like our DC.

So I am not going to patronise you by suggesting additional services that just aren't there - or at least, have to be fought for by parents with limited time and stress resources. I have been patronised by people too often in my time....have actually been told more than once 'You'll have your reward in Heaven' - er that will be a little too late for the reward to be of use.

Yes, it's shit.
Mine have different disabilities but it was very tough when they were little.

Our church shuts everything down for summer and I was remembering how shit this is when you are a single parent of disabled children. Not seeing anyone to chat to for six weeks as you are supervising children all the time and don't have the school gate chats. (Which was just about all I got)

Services are useless. You can't work due to all the appointments and being on call for school. You can't socialise much due to children.
You can't afford much so can't go out for coffee.
The kids wreck your house.
You can get hurt.
You don't fully sleep.

And no-one gives a shit really. You are either a problem to solve or a burden or tolerated on the edges, or a saint for doing it all with no practical or emotional support which is fucking useless.

It is a very sorry situation.

Most of my work as a social worker was in helping families with slightly older disabled offspring, but we did actually finish up with being able to offer at least some help. And I was always fighting their corner.

I do not think that parents themselves should be the ones to do the fighting and if that is how it now is then this is wholly unacceptable.

Not only do most people not give a shit, but a few are actively hostile....as we have seen on this very thread. The ableism on this site is distressing to read at times.

Yes it's awful .

What people forget is that these disabled children are just as loved and precious to their parents as any able-bodied child.

This does not mean that total exhaustion and exasperation cannot creep in at times.

I am deeply saddened by the lack of support available now. There is more support for a "vulnerable adult" than for these children because the assumption is made that it is the parents' job, even when it is beyond the physical and emotional needs of just the parents. Where there is a vulnerable adult, no such assumption is made. Sometimes offspring (mostly daughters) are asked to step up but if they say no, then the state steps in. It is massively hard for parents to say no - this is their dear child.

One of the reasons I resigned from social services was the total insensitivity and ignorance of the emotional aspect in all this. Parents just bash on because they have no choice, and SSD take this as a sign that they need do nothing. It is so fundamentally wrong.

One way around it might be for the parent/s to present as vulnerable on the basis of the impossibility of their caring role.