How the hell is this not in the media

[Sprinkles211]

https://www.birmingham.ac.uk/news/2024/more-than-40-of-parents-with-disabled-children-have-thought-about-suicide-study

This quite frankly is terrifying, with the current war on the disabled happening as the parent of disabled children I've found myself in darker places then I knew existed all due to how I know my children are viewed by society, they didn't choose this, I didn't choose this but they have value, they are valuable, if society acted with more humanity and less selfishness and greed we would learn so much about humanity from children like mine

@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.

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?

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

This, this for me has been the hardest, I don't expect it to be plain sailing, I don't expect to just get handed everything we need, I just need to know what things I need in place in what order to give my child the best outcome, what resources are available and actually useful to pursue, what is not. Its the perception of the public , the constant fight to prove my child's worth on paper not just once but multiple times with multiple organisations, the downright cruel comments on social media or even down the bloody supermarket that break you, it's being awake 24 hours but fighting your own body because you know your children need milk, so you spend the next 3 hours trying to get them to brush their teeth and look presentable, you vaguely check you also look semi human, you have to make sure your kids have every gadget and comfort toy they need to cope in the supermarket trolley with them just so you know they will sit still long enough to get the milk pay and get out, the looks start the second your in public and the under the breath comments about your 8 year old (mentally 2) with the ipad and god forbid the dummy as soon as your in close proximity, its also cost you £50 for milk because your child saw that shitty toy and you couldn't face one more second of the judgements from the consequences of saying no, your to weak, you need the strength for your child, you drive home in silent tears and hide in your little house hoping to fuck you don't run out of butter soon.
tonight is the first night I've had without my girls in 6 months and the energy to "catch" up on world events outside my 4 walls, all I want to do is scoop them up and live in the woods in a cabin to protect them from all this shit I'm expected to know how to fix and navigate, I think I'm going to be more mentally exhausted after my break than I was physically before.

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

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

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

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

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.

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.

🌼🌺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.]

Your last sentence is so powerful ❤️

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.

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.

The propaganda that disabled people are lazy benefit hoggers serves the government better so when they make cuts people don’t care (unless it affects them)

My DS has an EHCP and I’ve had a year that could have broken me - and it boils down to the ethos that prevails at my son’s school.
Which includes - some of the worst not-inclusive language I’ve heard, an attempt to off roll, one of the most aggressive conversations I’ve ever had, funding being taken by the school from the LA and being spent inappropriately.
I’m on anti-depressants but my New Year’s resolution was to fight. I know the law is on my side. I know the law supports the best interests of the child. I also know this:
“The Social Model of Disability was developed by Disabled people and describes people as being disabled by barriers in society, not by our impairment or difference. If modern life was set up in a way that was accessible for Disabled people, then we would not be excluded or restricted.”
I think the people who feel completely brought down by the situation are the people that care the most and the people we the need the most to help fight.

I don’t know what the answer is. There is so much need in every direction. A hugely frail and aging generation of millions of elderly. Social care bursting ar the seems. Hundreds of thousands of children in the care system in some capacity. Hospitals are over flowing with need. There are millions choosing not to work that are otherwise unencumbered, fit and well. Masses of homelessness.

Every single one of these people also need help, how did we get to this point? Or do we care more now as a society? That we do not choose to lock away our disabled and mentally ill? That we try to assist in small ways?

I am so sorry for those of you that feel so desperate, I am so deeply sorry your lives are such a struggle, and your precious children do not feel supported. Please call 116 123 if you feeling very low. 💐

You are silent heroes every single day in my book.

I’m shocked it’s that low to be honest. My DS is disabled (complex needs ND) but looks “totally fine. It’s just her excuse for being another fucking shit parent” (that gem was courtesy of the Tesco fruit aisle on Tuesday).

The fighting, the judgement, the tuts, the justification, the loneliness, the lack of support and total isolation. I’ve realised that everyone is all “it takes a village” but what they really mean is only if your child is NT/able bodied. But also the fear of what happens when he’s bigger and stronger, it hurts now, how much will it hurt then? What if he puts me in hospital? What happens when I die? It’s the last question that keeps me here.

Solidarity to all of you and to @Popcake your loss is devastating. I send you so much love and strength.

How many parents of children with disabilities are on their own? In most circumstances there will be another parent, and hopefully they should offer some respite for the main carer. It must be so much harder coping in isolation. Emotionally, physically and financially.

No-one cares in fact I think assisted suicide is being bought in to streamline the process less people the better as far as labour are concerned we are drains on society

Depends what you mean by "on there own" I'm 100% alone in this my neighbour has a husband but he works so she is alone a lot other friends of mine are mostly alone some 100% like me some share care with the ex but he needs to be spoonfed instructions and equipment one even demanding she sleep over to help him out it's still a break for her according to him because he is there....

It takes a strong marriage to survive a disabled child

What would make a difference in making people understand ?

I am a parent carer to a disabled child and it has been shocking how all family members & most of society looked the other way after the children’s father left me for a younger woman from work who he has gone on to have another family wifh & live a nonSEN life. I have had to “just get on with it” at great cost to my own wellbeing

What would it take to promote caring or understanding? Anyone reading with ideas please post!

I’m so sorry x

Thank you so much for that link @Popcake, what a wonderful charity. I have really respected Joanna Lumley since she fought for the Gurkhas to be allowed to live in the UK, and to therefore receive the same benefits as all of the other British soldiers.

I had never heard of the respite association before, but I feel very strongly that I should have. I therefore think that it needs to be advertised about a lot more - because I do read quite widely about all sorts of subjects, and wonder if I have never heard about them, how many others who would love to help in some way, haven't either?

My first call has to be to my friends - not to pressure them into donating, but to find out if any of all (3!) of them have heard of this organisation, and if not, that will spur me on even more. I think I will also try to approach the magazines and newspapers that I read and subscribe to, to encourage them to look into this charity, and to then consider posting adverts free of charge for them, and maybe some would be interested enough to write an article about them 🤞🙏

I'm afraid that these days I tend to be a bit of a pessimist, but this is such an important issue that I will give it a go - the worst those publications can do is to ignore me - and if they don't even bother to give me an apologetic reply, I think I will stop subscribing to them, and give that subscription money to this charity instead!

I don't think that I am allowed to ask any others who are reading this thread to donate to the above charity, but I hope that I can say that following your link Popcake, it was very easy to give a donation, and I was so pleased to be able to do so, although I wish that I paid tax so that the charity could get more!

I am holding you in my heart and thoughts Popcake, and I hate the thought that you are broken. I do hope that you have some excellent personal real life emotional support, and that you can mend with love and care, because you so obviously deserve it, and I am sure that it is what your Dear Son would want for you, whether he would have been able to put it into words or not. ❤️