Page 4 | How the hell is this not in the media

Sprinkles211 · 2025-06-06T21:58:09+00:00

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

Original poster

Sprinkles211 · 07/06/2025 10:03

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.

The link is actually on a university website, who conducted the study. I only came across it because in a moment of absolute despair I tried searching for people in my position. Your an arsehole through and through if you think over 40% of people caring for a child with a disability feel so lost they contemplate suicide isn't newsworthy.
Acknowledgement and Empathy cost NOTHING, yes so much more needs fixing but that wasn't what my post was about, I'm not begging for more money, more resources we all know all of that, I'm BEGGING for a smile as you walk past, I'm asking for you to see the things my child CAN do not judge on what she can't, I'm asking for you to not look at my 8 year old child like she's rubbed dog shit on her face because she's got a dummy in her mouth or rocking in the trolley trying to cope with the bright lights that physically cause her pain, I'm not asking for quiet hours with dimmed lights, I've taught my child to adapt and cope by using the things available to us which often is an ipad and a dummy, she takes up no more physical space then the baby sat in the trolley you smiled at down the cheese Isle, she's working so so hard to be a good girl for mummy so we can get some milk and go back home, she feels unsafe, she doesn't understand why people screw their faces up at her or why mummy has to wipe her eyes all the way home, she doesn't understand she's different, she's a 2 year old trapped in a larger body, often in pain, always trying to be a good girl, judgement, that's what I want the world to change and Acknowledgement that she's human and deserves to take up as much space as you , not more , NOT LESS. This alone would change our world!

OP posts:

Rifalo · 07/06/2025 10:11

Is it wrong that I'm glad for this thread? I genuinely thought that I was alone and there was something fundamentally wrong with me. Everyone else looks to cope amazingly

TheignT · 07/06/2025 10:14

Sprinkles211 · 07/06/2025 10:03

The link is actually on a university website, who conducted the study. I only came across it because in a moment of absolute despair I tried searching for people in my position. Your an arsehole through and through if you think over 40% of people caring for a child with a disability feel so lost they contemplate suicide isn't newsworthy.
Acknowledgement and Empathy cost NOTHING, yes so much more needs fixing but that wasn't what my post was about, I'm not begging for more money, more resources we all know all of that, I'm BEGGING for a smile as you walk past, I'm asking for you to see the things my child CAN do not judge on what she can't, I'm asking for you to not look at my 8 year old child like she's rubbed dog shit on her face because she's got a dummy in her mouth or rocking in the trolley trying to cope with the bright lights that physically cause her pain, I'm not asking for quiet hours with dimmed lights, I've taught my child to adapt and cope by using the things available to us which often is an ipad and a dummy, she takes up no more physical space then the baby sat in the trolley you smiled at down the cheese Isle, she's working so so hard to be a good girl for mummy so we can get some milk and go back home, she feels unsafe, she doesn't understand why people screw their faces up at her or why mummy has to wipe her eyes all the way home, she doesn't understand she's different, she's a 2 year old trapped in a larger body, often in pain, always trying to be a good girl, judgement, that's what I want the world to change and Acknowledgement that she's human and deserves to take up as much space as you , not more , NOT LESS. This alone would change our world!

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I'm so sorry. I'm crying with you. I hope you also meet kind people. My husband has white hair and beard and many an innocent child has been so excited to meet Santa in mufti and he loves the interaction.

BoredZelda · 07/06/2025 10:17

Nopicplease · 07/06/2025 01:07

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.

This particular study is limited to having disabled children.

I’m sorry you are going through stuff and I hope you find help.

But for parents with disabled children, they go through most of the same things as other parents, with the added stresses of trying to find help and support for themselves and their children, many of whom require round the clock care, for years and years. This is not to minimise your struggle, but your comments show how many can minimise the struggles faced by parents of disabled children.

Sadmummy3 · 07/06/2025 10:21

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.

The LA piss me off beyond belief. Anyone who sees my child can tell within minutes he has SEN. This includes people with no training.
My DS has been in mainstream reception for a year and he has learned nothing. He has a 1:1, it's not their fault. It's the LA telling me he can cope in mainstream. This is a child who still only attends part time at nearly 5.
No-one cares. The school only care because they want him to go somewhere else.
I guess I'm lucky I have DH although he's at work all week but it's lonely and I'm so scared how society will treat DS as he gets older. So scared he will end up alone and on the streets when I'm gone. So scared people will abuse him. So scared he'll be manipulated in to doing the wrong thing..
You'd think in 2025 you'd get a bit more support. I guess I can always take my MILs advice and just be firmer with him because then he'd be okay 😥

Original poster

Sprinkles211 · 07/06/2025 10:27

Rifalo · 07/06/2025 10:11

Is it wrong that I'm glad for this thread? I genuinely thought that I was alone and there was something fundamentally wrong with me. Everyone else looks to cope amazingly

Thank you, I think it's because we have been conditioned and shamed into this being our own faults, your not alone, I'm sad that I only had the energy to even contemplate posting because I was lucky enough to have a few hours out of the bubble (my mum is my absolute lifeline) I'm still so early on in this rabbit hole, my girls are only 8 and 2 and already experiencing such distain because of their existence, the pain inside my heart of knowing that I'm going to be 80 with two toddlers in grown bodies that still just want to be allowed to play in the sand pit is unbearable not for myself I accept that my path has changed but for them and not understanding why anyone else would be cross or tell them they can't sit nice and play.

OP posts:

x2boys · 07/06/2025 10:34

SomethingInnocuousForNow · 07/06/2025 07:50

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 :(

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That thread was awful but not for those reasons, she was the one being judged and her partner ,the mother had all but abandoned the child yet it was still the step mother and father fault according to many posters.

Rifalo · 07/06/2025 10:38

Sprinkles211 · 07/06/2025 10:27

Thank you, I think it's because we have been conditioned and shamed into this being our own faults, your not alone, I'm sad that I only had the energy to even contemplate posting because I was lucky enough to have a few hours out of the bubble (my mum is my absolute lifeline) I'm still so early on in this rabbit hole, my girls are only 8 and 2 and already experiencing such distain because of their existence, the pain inside my heart of knowing that I'm going to be 80 with two toddlers in grown bodies that still just want to be allowed to play in the sand pit is unbearable not for myself I accept that my path has changed but for them and not understanding why anyone else would be cross or tell them they can't sit nice and play.

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I understand this so much. Mine is 10, non verbal, wheelchair bound due to a degenerative condition, and in nappies. Forever in baby stage.
The world sadly doesn't have many people who have the compassion to accept this. I'm so glad you have your mum as a lifeline. Makes the journey a little less lonely

x2boys · 07/06/2025 10:40

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.

Thst all to common I'm afraid as the parent of teenager with complex disabilities, I cant tell the amount of meetings I have been in where it feels like the professionals are judging me but don't actually offer much in the way of practical support.

Ivecomeoutoflurking · 07/06/2025 10:52

Never has a thread made me cry so much. Much love to you all ❤️

Theseventhmagpie · 07/06/2025 11:04

Popcake · 07/06/2025 02:15

💐 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.

This and many of these posts are heartbreaking. I’m so sorry for your loss. I truly don’t know what we pay taxes for if not to help you and your son- bloody useless politicians the lot of them. Any decent person would admire and respect you and what you’ve done for your son. I truly hope you manage to find some peace. Xx

MrsEmmelinePankhurst · 07/06/2025 11:25

I’m so so sorry @Popcake x

CloudPop · 07/06/2025 12:33

DreamTheMoors · 07/06/2025 00:56

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.

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❤️

BlondieMuver · 07/06/2025 14:59

@Popcake my deepest sympathies

onthewineagain · 07/06/2025 15:02

I think often of the poor woman who killed herself and her disabled son during lockdown as they were completely isolated and she couldn’t cope.

so very sad.

LivelyWasp · 07/06/2025 15:17

Unfortunately this isn't surprising.

I can only speak from my experience & I've thought about it at times.

I wouldn't do it, but at times I've thought it would be easier & I absolutely idolise my children. I was 20 when I had my first. Who's got cystic fibrosis, autism, adhd, feeding tube & used to have a stoma bag. He was one day old & needed emergency bowel surgery that's when we were told he had CF.

I can honestly say, the worry I've had since that day has been debilitating. Then he got diagnosed at 10 with autism & adhd which added more worry.

Every morning I wake up with this intense worry about him. It's given me a HUGE fear of death & losing him.

I had my daughter 5 years later. She has autism, hypermobility & low muscle tone. Again, I constantly worry about her too.

I know that's part of being a parent btw. But it's like a worry you simply cannot switch off. & they're amazing kids, genuinely they are. I couldn't have picked better children even if I had the choice too. We have such a laugh, they are just amazingly bonkers.

But suicide has crossed my mind in the past. Because nobody cares, you're just looked upon by the government as another statistic. There's barely any help, the constant arguing with medical professionals for even the right medication. Every single thing is a battle (in terms of my sons CF & medication)

The constant advocating for them both, people's judging looks, hardly sleeping, schools barely having the funds to help. Feeling like I'm less than for not being able to work. Believe me, I'd love to work. I'd have a bit of adult company if I could.

My god. Have I moaned in my post. Sorry, just a little vent.

Sending love to all of the mums raising children with disabilities. Xx

IncompleteSenten · 07/06/2025 15:41

I have had several periods of seriously considering it and a few of planning it.
I have at times had a very dark voice in my head saying the best thing for my more severely disabled younger son would be to take him with me because I'm beyond terrified what his life would be like after me and my husband are gone.

It can be very very hard.

It's particularly bad at the moment when you have to read people talk about there not being bottomless pits and about what a burden on the tax payer disabled people are and how taking benefits off them is ok because they should work anyway.

It can make you feel that you are worth nothing to people and they'd be happier if you were gone and not a burden any more.

Popcake · 07/06/2025 16:01

Thank you for your kind comments. It’s truly horrifying. The lowly status of SEND parents is outrageous. Do you know that if your child dies under the age of 18 you get 2 weeks paid leave from the government for child bereavement? 2 weeks.

Can I recommend the FB group Parenting On A Different Path? I am not sure if allowed so apologies if not.

Popcake · 07/06/2025 16:02

I have never wanted a Care reaction button on MN more.

Cloudzilla · 07/06/2025 16:03

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.

Because they can show how inclusive they are without doing anything!

My situation has improved in the last few years, but I had years of being on the cusp of being suicidal and no one gives a shit.

When you have autistic children, people (teachers, professionals, friends, family) would far rather blame you than make any attempt to help or even just try to understand. It’s awful. Living like that day in day out on top of the usual struggles of being a parent is unbearable.

Boomer55 · 07/06/2025 16:08

People want to commit suicide for many reasons - I did after my DH died. My disability wasn’t the issue - the sense of loss was.

It’s an awful place to be, mentally.

Thankfully, most people push through those feelings and find a way. 🤷‍♀️

PennyInATizzyAgain · 07/06/2025 16:21

Elbiesdog · 06/06/2025 23:44

It’s probably more if they were honest. Nobody cares. Have you seen the news lately? Disabled people are to blame for everything according to the media and a good chunk of Mumsnet.

Sad to say ableism is rife in this country. The government and the previous two have shown they don't give a shit with their cutting services to the bone.

BellissimoGecko · 07/06/2025 16:27

Cloudzilla · 07/06/2025 16:03

Because they can show how inclusive they are without doing anything!

My situation has improved in the last few years, but I had years of being on the cusp of being suicidal and no one gives a shit.

When you have autistic children, people (teachers, professionals, friends, family) would far rather blame you than make any attempt to help or even just try to understand. It’s awful. Living like that day in day out on top of the usual struggles of being a parent is unbearable.

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I’m so sorry. It sounds so hard. 💐

Popcake · 07/06/2025 17:27

Boomer55 · 07/06/2025 16:08

People want to commit suicide for many reasons - I did after my DH died. My disability wasn’t the issue - the sense of loss was.

It’s an awful place to be, mentally.

Thankfully, most people push through those feelings and find a way. 🤷‍♀️

This is not about your disability though is it. This is about parents of disabled children, and the particular reasons why they want to die by suicide.

A shrug? Seriously? Wow.

Rosscameasdoody · 07/06/2025 18:13

Willyoujustbequiet · 07/06/2025 00:30

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

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Yours might well be the exception to the rule. As a disabled person born in an era when parents were encouraged to put their disabled children into institutions an involved from an early age in the fight for independence rather than institutionalisation as the norm, l absolutely disagree with you.