How the hell is this not in the media

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

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.

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

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.

Popcake I'm so sorry for your loss.

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.

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.

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.

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.

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.

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.

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…

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 :(

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.

"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.

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. ❤️

I’m so sorry x

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!

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

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

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.

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.

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.

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.

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)