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How the hell is this not in the media

115 replies

Sprinkles211 · 06/06/2025 22:58

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

More than 40% of parents with disabled children have thought about suicide – study - University of Birmingham

41% of parents in England who have a child with long-term illness or disability have thought about suicide while caring for their child, new research has found.

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

OP posts:
SomethingInnocuousForNow · 07/06/2025 07:47

"all I want to do is scoop them up and live in the woods in a cabin" I get this urge very, very strongly with my disabled DC! One of my closest friends in a similar situation also said the same unprompted once.

Fitasafiddle1 · 07/06/2025 07:47

I think those that find out during early pregnancy that their baby is likely to be severely disabled should be given far more information about the realities of a life dedicated to caring for a disabled person.

In our family my cousin was told she would be supported, the impact on her was really minimised and soothed away, everyone told her she would find a way to cope etc. but 20 years on those people are no longer around, and she is struggling so much. She feels the brutal reality of her situation could have been communicated to her, that she had no idea what she was signing up to at the time.

Maybe in cases like this more could be done, even so the parents are fully prepared. It has cost her ger marriage, house, career and even a single holiday in decades. A huge sacrifice.

SomethingInnocuousForNow · 07/06/2025 07:50

Seymour5 · 07/06/2025 06:48

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.

Edited

In my friendship circle MANY mothers are parenting disabled DC alone. If I didn't have my DH I genuinely don't know what I'd do.

There's another thread from a stepmum of disabled boy. I've found it really distasteful because her tone towards the boy's mother is so judgemental. She has herself and DH to look after the boy but the mum is all alone and the only one who is attacked by the child. Sounds like the professionals are all laying into the mum as well :(

Secretsquirels · 07/06/2025 07:51

Needsleepneedcoffee · 07/06/2025 01:55

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

I know a lot of people who can’t get melatonin prescribed who buy it in France (or any other European country). It’s available over the counter at 1mg strength as gummies and there are no restrictions on bringing it into the uk. Even if you can’t go yourself, might be worth asking someone to pick up a bottle for you…

MrsEmmelinePankhurst · 07/06/2025 07:52

There’s a live thread on MN right now, written by someone who supposedly works in a SEN school, saying that parents expect too much funding/help for their disabled children.

Disabled people are demonised by society and by the media. Parents of disabled children are expected to look after them 24/7/365 without a break, at the expense of their own physical health, sanity and financial security, and never to ask for help. When someone complains on here about looking after their elderly parent they are given all the sympathy in the world, and signposted to loads of help re carers assessments, Aged Care, “step back and be kind to yourself,” etc etc. Yet if they’re struggling with a disabled child - who may be violent, or incontinent, or too heavy to lift, etc etc - we just hear “you’re doing a great job, sorry there’s no respite, you’ll just have to crack on with it. For the rest of your life.” There seems to be the mindset that, as the parent chose to have a child, they have to do EVERYTHING for them FOR EVER as a punishment for their lifestyle choice. I’m surprised that ONLY 40% have thought about ending their lives, tbh.

StScholastica · 07/06/2025 07:54

A few years ago, I worked in a school for children with (mainly) autism and ADHD. We had a few kids on one to one OBS at all time, because of the risk to themselves and others.
We had one lad who needed two people with him at all times. The school was very well resourced, with a pool, sensory rooms etc. and very secure with high walls. Even with all this in place it was difficult to keep some of the children occupied and safe all day.

One day the police and SS came to the school, the boy who needed two carers had escaped his home over the weekend and triggered a big search. They wanted us to criticise his Mum.
She deserved a medal for keeping him safe and her other child safe from him.

She had been asking social services for more help for years. I have no idea how the poor woman coped but I know that support for families like hers is appalling.

Muffinmam · 07/06/2025 07:54

I’m wondering - did you have your children close together or were they spread out?

I have a severely autistic five year old. Level 3 on the levels with global developmental delay. I love him but I always wanted a normal child.

I understand why parents feel this way. I have felt this way before.

Muffinmam · 07/06/2025 08:02

StScholastica · 07/06/2025 07:54

A few years ago, I worked in a school for children with (mainly) autism and ADHD. We had a few kids on one to one OBS at all time, because of the risk to themselves and others.
We had one lad who needed two people with him at all times. The school was very well resourced, with a pool, sensory rooms etc. and very secure with high walls. Even with all this in place it was difficult to keep some of the children occupied and safe all day.

One day the police and SS came to the school, the boy who needed two carers had escaped his home over the weekend and triggered a big search. They wanted us to criticise his Mum.
She deserved a medal for keeping him safe and her other child safe from him.

She had been asking social services for more help for years. I have no idea how the poor woman coped but I know that support for families like hers is appalling.

Did she get help after this?

I set the house alarm to stop my child from escaping. Every so often I forget I set it, open any external door and the alarm triggers.

The alarm is so painfully loud my son hasn’t attempted an escape in a while. There was a time I caught him trying to escape by secretly getting into the garage and opening the garage door. I was only metres from him.

The thing is - a full home security system is so expensive! It has been here for a decade and we find it expensive just to pay for maintenance on it. I don’t know how most normal parents with autistic children could afford an alarm system.

CatkinToadflax · 07/06/2025 08:16

A few years ago I overdosed because I couldn’t stand the lack of support from Children’s Services anymore. Someone from Children’s Services then phoned me to scream at me for having the gall to criticise them when I was in A&E.

AInightingale · 07/06/2025 08:23

August2024 · 07/06/2025 07:26

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 totally get this. Similar sort of situation, son's father has decided to cut himself off because he's probably ashamed of his child, and has a new girlfriend. How do men get away with this? There is little societal judgement. No-one thinks any the worse of him. No contact at Christmas, birthdays etc. I wish more people understood that paternal love isn't 'unconditional' a lot of the time.

whitewineandsun · 07/06/2025 08:28

Popcake I'm so sorry for your loss.

SomethingInnocuousForNow · 07/06/2025 08:31

CatkinToadflax · 07/06/2025 08:16

A few years ago I overdosed because I couldn’t stand the lack of support from Children’s Services anymore. Someone from Children’s Services then phoned me to scream at me for having the gall to criticise them when I was in A&E.

That's terrible, I'm so sorry you went through that.

I absolutely detest the stupid dance we have to do with Children’s Social Care just to get respite. In our area, if you want proper respite you have to be on a CiN or you only get a handful of playscheme days a year. Even with the Disabled Children’s Team you have to have compulsory Social Worker visits and your children's bedrooms inspected. You have to be not coping to a certain level so that you get the respite (otherwise you 'don't meet threshold') but very careful to show you're coping enough that they don't initiate a child protection response (happened to a few of my friends) which would then mean your ability to make choices about your children is quite severely compromised. You have to constantly act nice, humble, willing to try everything they suggest whether you agree with it or not. It helps immensely that I am middle class with a SEND professional background because they are openly hostile to other parents.

user1471505356 · 07/06/2025 08:33

I think the BBC Breakfast had this as an item this morning.

shutupgardenbirds · 07/06/2025 08:33

Because no-one gives a shit. Because the whole SEND system is inherently flawed and unfit for purpose. Because the whole SEND system is built around parent blaming as a default. Because special schools are so few and far between actually getting your child into a school means you're either paying thousands for private reports or taking your LA to a tribunal. As for respite. Hahahahahaha. Oh and the absolute pittance that's carers allowance. Don't even get me started. As a parent carer for a disabled child you don't matter. My GP surgery had a display for carers week last year. Not one mention of parent carers or one picture of someone who wasn't under the age of 70. I raised this and got catsbum faces as a response.

The only time I actually got anything vaguely approximating help for my son was after I ended up in A&E after he'd injured me. He was 6 at the time. No-one wants to have a conversation with their child's social worker asking for their child to be taken into care. Which didn't happen by the way as there were no foster carers in the whole of ENGLAND with the experience and training to meet the needs of a very complex behavioural needs child. And no children's homes either as they usually start from a much older age. Instead I got the desperately needed special school place I had been asking for for three years. Multiple mainstream placements had failed him and yet the LA were insistent that a mainstream school could meet his needs.

The irony of it all? The extreme and prolonged stress I had been subject to for so long meant I became disabled myself pretty much overnight and I'm now a wheelchair user. At least we have a selection of blue badges to choose from now and a 'legitimate' reason to be parking in a blue badge space. Downside is that the judgy comments and accusations of being a shit parent have increased exponentially.

I'm surprised that 40% figure isn't higher myself. I certainly have thought about it myself.

Needsleepneedcoffee · 07/06/2025 08:35

Secretsquirels · 07/06/2025 07:51

I know a lot of people who can’t get melatonin prescribed who buy it in France (or any other European country). It’s available over the counter at 1mg strength as gummies and there are no restrictions on bringing it into the uk. Even if you can’t go yourself, might be worth asking someone to pick up a bottle for you…

Thank you, honestly I'm at the point that I might book a day trip to France so I can buy them and hop back on the Ferry.
Thank you for the recommendation

Secretsquirels · 07/06/2025 08:37

Needsleepneedcoffee · 07/06/2025 08:35

Thank you, honestly I'm at the point that I might book a day trip to France so I can buy them and hop back on the Ferry.
Thank you for the recommendation

Its been life changing for a lot of families we know….

Midlifecrisis23 · 07/06/2025 08:38

The government doesn’t care about disabled people (children included) as they can’t always work and pay taxes therefore the government sees them as a drain on society much like OAPs.

It’s a sad way to look at the world based off your worth to pay tax.

lljkk · 07/06/2025 09:08

It IS in the media... that's how OP found a link to post here !!

There's so much depressing shit in the news, I don't really want the media to only talk about the depressing shit.

Mzmurfy · 07/06/2025 09:26

Needsleepneedcoffee · 07/06/2025 08:35

Thank you, honestly I'm at the point that I might book a day trip to France so I can buy them and hop back on the Ferry.
Thank you for the recommendation

Have you tried going onto Amazon, changing the settings from amazon UK to Amazon Germany and ordering it? This is what I do and it's delivered to my home without issue (I am a terrible sleeper).

Sorry I'm not a regular poster, however I've read this thread with great interest/ outrage. I work with adults with complex needs / disabilities and I have nothing but the highest level of respect for parents of children with disabilities.

MadameCholetsDirtySecret · 07/06/2025 09:39

Philandbill · 07/06/2025 05:33

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.

I was a governor at a special school for a number of years and said the very same thing. The way we treat our most vulnerable is shameful.

My admiration for all the parents I have met due to my role and heard talk here, is unbounded.

Rosscameasdoody · 07/06/2025 09:45

lljkk · 07/06/2025 09:08

It IS in the media... that's how OP found a link to post here !!

There's so much depressing shit in the news, I don't really want the media to only talk about the depressing shit.

Most of the stuff adversely affecting disabled people gets buried in the press and the media. You only have to look at the hype around the cuts to PIP recently announced. The government is publicly patting itself on the back over one random, mean spirited change that will mean up to a million significantly disabled people losing their support altogether - demonstrates very nicely that it’s not about support, but all about the money.

If the cut goes ahead, those people who have PIP daily living awards at either standard or enhanced rate via a score of two or three points in each descriptor will lose the daily living component altogether - a minimum of four points in at least one descriptor is now the minimum qualification.

The government are priding themselves on the saving for the tax payer from the cut. And yet nowhere have l seen an explanation of the full implications of it.

Currently both the standard and enhanced rates of PIP daily living mean that carers allowance for the PIP claimant can be claimed by a friend or family member, providing they satisfy eligibility conditions regarding hours and income thresholds. Those who lose PIP daily living will also lose carers entitlement. This will mean a significant number of disabled people also losing or having to reduce their unpaid carer support because carers will no longer receive the allowance and will either have to increase working hours or return to work.

The knock on effect will be many more disabled people falling back on the already broken care system for support. Supporting a disabled person with care at home - and in many cases in 24 hour care - will cost significantly more than the PIP and carers allowance clawed back through this cut. So in actual fact the tax payer burden is increased, not reduced. The government haven’t saved a penny - all they’ve done is shift significantly increased costs to another part of the budget, so that they can claim to be doing something abut benefits.

For those posting here, this will have a significant impact on children who receive child DLA. At 16 they will be migrated to PIP, which is a much more difficult benefit to secure. I’m urging everyone l know who currently claims PIP or child DLA to lobby their MP to make them aware of the long term implications of the cut and to ask them how they intend to vote when the time comes.

I suggest everyone here who has a disabled child does the same before it’s too late. Many disabled people and their carers, as well as parents of disabled children, will have voted Labour in rthe hope of halting the vicious cuts proposed by the Tories, only to be turned on by the same Labour government who, in opposition, were so fiercely critical of Tory proposals for cuts. It’s about time we remind our MP’s that they work for us, not the other way around.

MrsEmmelinePankhurst · 07/06/2025 09:48

CatkinToadflax · 07/06/2025 08:16

A few years ago I overdosed because I couldn’t stand the lack of support from Children’s Services anymore. Someone from Children’s Services then phoned me to scream at me for having the gall to criticise them when I was in A&E.

I’m so sorry. That’s just evil. Are you ok now?
Do you have any support now?

BellissimoGecko · 07/06/2025 09:49

Because all that people seem to care about is LSGTQ people, and no other protected characteristics?

I’m so sorry, OP. I hear you.

AgnesX · 07/06/2025 09:50

leaderZ · 06/06/2025 23:28

I remember that awful story of the single parent lady in Acton W London with photographer ex just travelling doing fun life, left with a horrendously difficult violent (?) large son in a wheelchair poor thing killed herself and him.

mist he so many others similar, seems nothing to offer these poor peoole

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

Good grief, how you can think that let alone say that. Society was dreadful towards families.
And it definitely wasn't good for the disabled person.

TheignT · 07/06/2025 10:03

NoBiscuitsLeftInMyTin · 07/06/2025 02:32

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'm in my 70s and your parents are who they are. Don't involve me in that because of my date of birth.

You sound as if you were far more judgemental about your nephew than I have ever been.

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