How the hell is this not in the media

You can buy melatonin through YourHealthBasket. You have to phone them, unlike all the other stuff you can get online then I think you have to set up an account but I get posted to me whenever I need it.

I have disabled dc so am well aware of the fight for independence.

The hospital I mentioned dealt purely with those with severe mental health issues who were there for both their and the public's safety. It was a wonderful community and provided a standard of care over and above what exists these days.

Honestly I am suicidal - been a carer for my Ds is just classed as a protective factor. 🤷‍♂️

Absolutely. Parents are saving the state a fortune.

In my experience (I have lpa for elderly relative with dementia) that's cheap. We've burned through getting on for £600k. My nightmare is what happens when the money runs out. The fact that she's been in her home for years is testament to the care she gets. The thought of moving her is awful.

You would have thought so wouldn’t you ? Unfortunately the people frothing about the cost of disability benefits are usually not disabled, not carers and with little no experience of disability from any other source. But still they sit in judgement.

Just look at the cost of dementia care ffs, running at about £1000 per week. I mean, £80 in Carer's Allowance and less than £200 in PIP is kind of the state getting a bargain, isn't it?

Some heart breaking and exceptionally eloquent posts on here. A 'Post Office Scandal' type drama on the subject might help understanding. Also I think any pharmaceutical and technology companies profiting from the various medical advances that are saving and extending the lives of people from premature babies to the chronically sick and/or dementia suffering elderly need to contribute to fund any social cost fallout of said advances.

It’s usually the people who object to sickness and disability benefits who support reintroducing institution and hospital based care. And usually without even a nod to the fact that this would cost significantly more per capita than any combination of disability/sickness benefits currently in payment.

Agree. Unfortunately, a lot of people seem to think that disabled people are a nuisance. There are enough threads on here to show that.

With respect - and l I absolutely understand that it’s hard for everyone - but now take the problems you have and add in trying to exist on benefits because your child needs round the clock care. Add in not being able to afford the electricity it costs to charge equipment essential to their well being. Imagine being permanently exhausted because the care or respite you need just isn’t there. Having to fight for appropriate school provision. Having to fight social services for every hour of (mostly inadequate) care. Having to face constant reassessment and explanation of your childs’ condition to qualify for benefits. And on top of all of this, and countless other worries, having to face the reality of what will become of your child when you are no longer there to advocate for them. You have no clue.

They interviewed 750 people, whilst the number is alarming, the way they collected their sample will change the results, what was the threshold for inclusion into the study, are we talking only about children needing 24/7 care? Disability is a wide spectrum

It’s absolutely the issue. Especially when the press and the media are intent on supporting government of whatever colour in painting the sick and disabled as workshy scroungers in order to make cuts affecting the most vulnerable more palatable to Joe Public.

Nothing but love to you OP. Having a child with disabilities can be one of the most difficult things a human can experience. We live in a society that values productivity and assimilation over everything due to greed. You can measure a society by how it treats the most vulnerable, and, well..

As a sidenote I recommend Special Books by Special Kids on YouTube. They interview people of all ages with every kind of disability or health condition that you can imagine. They include family members in the interviews and put a candid light on the struggles of people with disabilities and their parents/carers.

No one disabled themselves would agree with you. No-one.

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.

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.

I’m so sorry. It sounds so hard. 💐

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.

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. 🤷‍♀️

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.

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

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.

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.

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