How the hell is this not in the media

My DS is only young but I have had some very dark thoughts. I absolutely fear what will happen when he gets older/stronger as I already struggle. I worry what will happen when we're too old to care for him or when we die.
I sometimes think it would be easier to end it for both of us but I can't do it. I will never put him in a home. I remember the horrendous documentary a few years ago about how so called "carers" were treating patients at a home for disabled adults.

I'm so sorry for your loss @Popcake. I was a special school teacher for twenty years and could see how hard life was for the children's families. I could also see how very loved the children were.
There's an old saying about how well a society treats its most vulnerable members shows how good that society is. Well in this country there's been years of cuts to services and our society is the poorer for it.

Your last sentence is so powerful ❤️

🌼🌺to those in the thick of it, and esp to @Popcake

Despite all the bleating on about being inclusive, society really isn’t inclusive to those whose needs are a bit inconvenient to others or difficult to meet. The invisible burden on unpaid carers that we rely on in this country (& others) is shocking. And you’re right OP - why isn’t that study in the headlines? [Rhetorical question - disability is not glamorous enough, or photogenic enough, or easily fixed enough. And of course most of these unpaid careers are women, and therefore not seen as full humans, just support workers who exist to do the shitty jobs in life - for 58p an hour if need be.]

Sorry to read this. The constant struggle wears you down and makes life miserable. The greed of people at the top, punishing the disabled makes me so sad, so angry. It's so disgusting, just so wrong.

Thank you @PlayingDevilsAdvocateisinteresting

Writing to MPs helps. If you want to make a charity donation, there are a few smaller charities offering respite, this is one (disclaimer I have no connection to it and haven’t done the research other than a quick google and Joanna Lumley is connected to it).

https://respiteassociation.org

or Google if there is one locally to you if it is somethin you would like to do.

I am so very, very, sorry for your loss @Popcake. Your son was so lucky to have you as his Mum, however disabled he was he knew your love, he felt your love, so please at least try to take some comfort from the fact that you were the only and very best Mum for your Dear Son. ❤️

I am so sorry that there is nothing tangible to help you survive in some sort of physical comfort for the rest of your life. You deserve a special pension that is tailor made for Mums (and Dads- if there are any) who have dedicated the best years of their lives to caring and fighting for their beloved and so very special children.

You, and @Sprinkles211, and the far too many others on this thread who are and have been suffering these terrible injustices have made me feel so sad, and I genuinely thank you so much for doing so. I feel as helpless at being able to help any of you, as I feel about being able to stop Putin or Trump in their tracks. So please, if any of you have any energy left to think about it, and can come up with any ideas that I, and anyone else who wants to help, can help, then please tell us.

I am not so crass as to be expecting any of you to add to your already far too full loads to do the thinking for the far luckier members of society - or in this instance, Mumsnet - but sadly you are the ones in the position of knowing what sort of help will hopefully be the most helpful in your situations, so any guidance you could give on that could be massively helpful.

I feel that I should own up here to the fact that since being in my forties (I am in my late 60s now) I have aquired several comorbidities, that unfortunately have left me being unable to do any physical things to help - I am virtually bedbound due to various things. But if I was younger and fitter, and had the room, I would have loved to be able to offer a few days of respite to mothers like you. If I couldn't do that, than thinking about it now, if there were any day care centres near to me, I would have liked to volunteer at one of them - I used to do voluntary work on the wards at a big hospital near to me, so I don't think that I am all talk. As I am now, all I can think of being able to do, is sending letters and emails to relevant government ministers, charities, newspapers - both local and national, and heads of schools, and their governors. I feel very strongly that our young people should learn from an early age about compassion, and not being totally selfish and shallow, and unfortunately, I don't think that we can depend solely on parents to bring their children up like that, so maybe both schools, and society as a whole, could do a lot more in teaching/training/showing our young how to become well rounded, caring, considerate, helpful adult citizens.
I also wondered if there are any Mumsnetters on here who own or work in printing, if they could offer to print leaflets locally for free, or at cost, asking for the general publics help in maybe - once vetted and trained - offering to maybe stay, and help, for a few hours every week, or even just once a month, a 24/7 parent of a special needs child, to either have a rest, or go out for a few hours for leisure, or if necessary to have the time to shop, or sort out anything really, without having to take their child along too.

I'm sorry this is so long, and I'm sorry that at the moment my brain appears to have gone asleep, and I am really sorry if I have somehow managed to upset, or annoy any of the people on here who I only want to help. xxx

No words apart from our thoughts and hope you're all OK. xx

It all sounds like a constant battle and it sounds like a nightmare on top of dealing with the day to day issues - I hope youdont mind me asking - the people who you feel and critising and judging - is it a mix of ages or of older people?

I used to be harsh and inwardly judge other parents etc (like Im sure most of us do if we're honest) but as we get older I just realise how lucky we were with our boys and have a damn sight more empathy than we did 20years ago - to withstanding there are some kids who are not brought up - but dragged up - or not at all - and left to their own devices and theres no wonder that they are bit feral at 10yo - AND I KNOW everyone here hates that word but its bloody true - its hard work to bring up kids with please/thank yous and (terribly middle class I know but to automatically use a coaster on an oak table etc) - as its so much easier to let them do what they want - in your house, anyones else or anywhere around the estate etc or shove an iPad in front of them 12hours a day) - THIS ISNT the point as we've all done it and the people criticising dont know whether its the first 5mins of the day with the tablet or the 12th hour.

So - sorry to come back to the point - is it older people who are more critical - the reason I ask as I said earlier when in my 20/30's we were uber critical of others' parenting skills when out and about - we are now around 50yo and a lot more understanding even though ours were a dream thankfully - however I go out with my parents - late 70's and the in-laws - same age - and they are hyper critical even when its obvious that kids have extra needs, or physical disabled etc and I will now tell them to shut up - think themselves thankful etc and they always comply - not that it should be up to us to tell them but I'm wondering about a generational thing that 60years ago any disabled kids wouldn't have been out and about in public.

I have 5yo DN who is SEND/autistic and is terribly hard work. When they visit we have to move everything out of reach - remote controls/laptops etc, he climbs the sofas and hangs off the curtains - and climbs the kitchen units. I used to criticise (not in earshot) what they didn't tell him off or to tell him no - but I've learnt it doesn't work - he seems to process commands/guidance 2mins after they're suggested. I feel terribly for my DB and SIL and they are fantastic with him as is his sister at 10yo - she puts up with a lot - but we've learnt what we need to do/make things easier - ie a remote control with no batteries in it for him lol - but my parents in their late 70's haven't/can't deal with it as they're from the days of telling kids and they behave. Its very awkward, but we do what we have to and diffuse things when we're all together.

Im hoping its a generation thing and that it'll get easier - sorry for my clumsy way of putting it

I don’t have words to say how angry and sad this makes me. 💐

💐 for those going through this.

My disabled son died as a teenager this year. He was 19. His entire life was battle after battle. Exhausted all the time. Constant worry; of how the world would treat him, about school, friends, bullies, medical appointments, me being on shitty carers allowance.
Even other disabled people, typically but not always older, shouting at us if we used a disabled bay with our blue badge.
Constant demonisation in the press.
Worrying what the bloody government would do next to the benefits we relied upon.
When my son was 8, I came so close to ending my life. I got through it.
Now my 19 year old son is dead. I have, as far as society goes, nothing to show for the years I cared for him. No private pension. No real savings. Useless. My world shattered. I am beyond tired and lost. Now I am broke and broken.
Solidarity with all the other parents and carers who are at breaking point.

I can understand why, and to be honest I'm shocked that number isn't higher.
I have 2 autistic kids, and I've had to fight for every little bit of support we have.
My children both present so differently, I'm torn between trying to stop a loud and aggressive outburst from the younger autistic one, or the elder of the 2 hurting themselves because they are struggling.

I've run in a few hours of sleep each night, and seemingly I can't get melatonin to help correct the bad sleep- the younger one was awake until 11:34 when he fell asleep having trashed his bedroom. He was back up at 1am

Seems to me that whether or not it's in the media is hardly the issue. The issue might be something like: Is it clear where parents can go for support? Or, What particular organizations should be re-allocating their resources?

@Sprinkles211 Thank you so much for that. It made me cry. I so appreciate you taking the time to write it.

It shouldn't be made this hard for parents. Your children are lucky to have you, but I'm sorry to read how much you've struggled.

Fucking hell. Having spent about a year of my life in a secure unit. You are totally wrong. I pray you haven't got a disabled or ill child.

I don't think it is limited to parents of disabled children.
I work full time and am constantly stressed about money. There is never enough. I don't know how I'm buying school uniforms, there's probably not enough money to feed us this month and knowing that my wages and uc are going to be lower next month im definitely not sure how we're getting through that.
They all need new shoes and my work shoes have holes in. I need 3 new tyres and work on my exhaust and I just don't know how it's happening.
It's exhausting.

Me. Many times. My youngest is disabled and omg the battles and advocating are endless. Then the stares and judgement on top.....

My dad did it. So did my sister.
Yeah, you’re considering it - it seems like an option, maybe even a halfway decent one.
All your problems gone in an instant. No more heartache, no more bills, no more.
But we’re left to tell your story - how funny you were, how smart and how very much we loved you.
Abd yeah - life’s shitty. It’s shittier with you gone.
There’s a gigantic empty place that only you can fill.
Please - don’t. I’m begging you. ❤️
I’m right here. And I know.

sometimes wonder if the days of the asylum, in Victorian times or mental hospitals in C20th were better for parents - we transferred all that effort onto adults needing to also work & live whereas in an institution someone is meant to care (know often doesn’t / didn’t happen and a lot of abuse happens) but removes the onus on the parent

I bet a lot of people would agree with you, here and in RL. That's the sad part.

It is absolutely horrendous.

Sadly my friend committed suicide due to poor mental health and strain of caring for her two disabled children. She struggled to access support to assist with care of the children, or to provide with respite.

Having work in service that was meant to help families like hers, I left it a number of years ago disillusioned by lack of support that we were able to offer due to tightening budgets and restricting who was able to access the support. When I first started a wider range of children could access respite provisions on a regular basis. By time I left only those whom had hit crisis point or about to hit it, were offered respite.

More support and funding is desperately needed, but it will be too late for many of these families, because they are not seen as a priority.

Having grown up in a community formed around one I disagree tbh.

Yep if it's not immigrants it's the disabled.

This is something I've never dared ask my parents as an adult. I'm afraid of what they'd say. They have admitted that having a disabled child was very, very difficult at times, though. I understand that. It wasn't easy being the disabled child, either, at all. Or, a disabled adult, for that matter.