To tell you what life is like with a disabled child?

[FlyingTigger]

Following on from the thread
https://www.mumsnet.com/talk/money-matters/5066331-do-you-feel-bad-for-receiving-a-high-amount-of-uc

DD is non verbal and has a learning disability. She’s 6

we co sleep which means I’ve not had a good night’s sleep in years (will often wake in middle of night, sometimes for 20/30 minutes but often for and hour or 2). I’ve tried sleep training but distressed her to the point of nearly throwing up whilst crying. Also a safety thing as will happily climb/go where shouldn’t. Won’t go to sleep independently and will often wake up or cry going to sleep

Not potty trained yet. Have tried but genuinely could not care less about pooping and peeing everywhere. Like couldn’t care less! Oh and also smears her poo. Will take off her nappy or stick her hands in and rub it on the carpet/walls/furniture. This means I really have to watch her 24/7. She’s clever in the sense that she’ll often wait until I’ve got my back turned to do it!

no sense of safety. You have no idea how jealous I get when I see children her age walking happily next to their parents. I could never let her hand go even for a second.

I cannot put into words the anxiety I feel about the future. Imagine your child not being able to tell you if they’re in pain or they’re being hurt. I’m a single parent and I wouldn’t even consider a new relationship due to how paranoid I am re new partner.

Things like the support they’re entitled-her EHCP took a ridiculously long time to come through and even that was a fight. It’s not perfect but I don’t have the strength to fight. Things like SALT and OT on the NHS is abysmal. Literally a few sessions and I could have got the information off Google.

Bangs head in frustration and often don’t know why she’s annoyed. Scratches/pinches when upset

Has broken countless tablets and phone and the TV!

Sensory issues so things like clothing will
often take off. I’ve walked in on her standing naked on the window sill

Loves to tip things out eg the fairy liquid/pasta/rice or a cup
of water

I would happily swap the benefits I receive as a single mother for her health. I receive maintenance from her father but would happily give that up for him to take the load off 50/50. He can’t and won’t.
I work part time but it’s very likely my contract won’t be extended as I’ve taken too much time off when she’s been ill (wont even take Calpol and can’t blow her nose!). Her school have a breakfast club and clubs until 4ish but that means she’s likely to have had very, very little to eat (it’s heartbreaking to see how she eats once she’s home-like she’s not had anything all day). There’s also the issue of finding staff for her during this time as she needs 121 support and I don’t think the EHCP will cover that. Then there’s all the school holidays to think of! Wtaf do people do during the 6 week holidays with a SEN child who needs 121 at all times??!!!
I do not think of things like career progression or changing jobs as I will literally take anything that fits around her needs. I’ve graduated with a degree and have two masters but they don’t mean much at the moment.

I’m sure I’m missing things out but I sincerely hope this gives you an idea of what it’s like
being a carer to a child with a disability. This is just one side. There are countless others dealing with disabilities or disabled children (all with their own unique challenges). I can’t even imagine what it’s like dealing with the above but x2 or 3 children.

I'm yet to meet a single parent who has a disabled child who has not "stepped up."

My entire life has been turned upside down. Everything I worked for. My relationship. My quality of life. Every single minute of my life is no centred on ensuring my son is safe, happy and calm. Not sure how I could step up any more....

Now*

I don’t think it’s a lack of care I just think we are faced with a society with so many disabled children with needs we no longer have the resources to meet them.

There are more special school places now than ever before and the budgets have never been bigger, councils are literally going bankrupt in part due to SEN funding.

That’s not me blaming any individuals but the demand has risen beyond what we can cope with especially when 16% of working age people don’t work at all and we are broke.

If they are only earning £2k post tax, should they be reproducing? Or are they saying I have a penis, and therefore I can have a child that others will pay for?

I wonder how many single parents of disabled children receive £3k in benefits and significant child maintenance. I’m willing to bet it is a tiny fraction of the welfare budget, so tiny it’s not worth even discussing.

There are far more useless parents (mainly dads), paying zero for their children than there are people like the OP of that thread. If they paid, the mother wouldn’t need to use public services as much. It’s almost ! socially acceptable, you don’t get 1000 posts and outrage over a man not paying for his children. It happens all the damn time on here. Yeah you get a number of people who, rightly, slate the non paying father but it doesn’t generate the same fury!!!!

I disagree

I think as a community if we cannot come together (via a small proportion of our taxes) to enable the care of disabled children then our community is completely fucked up

That's exactly what communities should do

You'd probably say my DS was "mildly impaired" if you met him. And no, he doesn't need the level of care that many disabled people do, and I recognise that.

But his educational package, and the benefits that allow me to support him in the intensive way he needs, mean that hopefully he will succeed at school, be able to leave home for university and get a good degree, and get a good job as an adult.

Without the support he currently gets, he would be destined for prison at best (and prison isn't cheap!), suicide at worst (not being melodramatic, it's an outcome all too common).

Are you suggesting that people can only have children if they earn a certain amount?
And you know a man can't have a child by themselves right ?

At least over 35k per person apparently! I think some people forget that we do actually need new children to, you know, keep surviving as a society…

I fully agree with you.

Precisely. And you just know they would be the type of person furiously writing a thread on here about the ‘badly behaved’ autistic child disrupting their own child’s nursery class/childminders/school group and how they shouldn’t be allowed to be there 😂

Well what should we do? Put people down as soon as their disabilities become apparent? Stop rescusitating very premature babies because they are likely to have lifelong issues or turn out disabled? Force prenatal testing and abortion of faulty foetuses on all women?

We can't just get rid of disabled people FFS.

I'm interested to hear your ideas for how we actually change this?

Oh fuck yes they totally would 😂

So you are disagreeing that a parent shouldn’t step up? That a parent shouldn’t bear some of the costs of their child? That a parent can go and get many more children, without consequence?

Finally, a kind post!

I have never encountered the extreme views on these threads in real life towards me or my disabled child. Who are these people? Are they eugenicists? I cannot believe the ignorance and lack of empathy.

You are exactly the sort of person I want my taxes to support. You should have more support.
You sound amazing.

No not in the slightest

But that doesn't mean that married or single, that if one parent had to be a full time carer that there should be financial provision for that along with financial provision for the additional costs a disabled child brings

Otherwise what's the point in a community at all of we can't even look after the most vulnerable?

There's a massive massive spate of these sorts of posts at the moment

We are also heading to an election and the Tories appear to be trying to win on the basis that disabled people are the problem, not their monumental financial fuck ups and back handers

I don't think its a coincidence...

The tax payer shouldn’t be paying to support a child where their parents are already doing so. UC and PIP aren’t compensation. They should be for a purpose. If that need is met by the father how is it logical for the tax payer to pay again? Just because those are the rules doesn’t mean they’re fair and just. Think how many other things could be funded if maintenance were taken into account. Any money saved can be redistributed- maybe to the shitty services people keep referring to.

So you didn’t read my previous post that said cost of disabled child minus income from parents and the difference picked up by the benefits

Exactly ,posters on here love having a a child with special needs in their own children's class of its a positive experience for their kids and teaches them about inclusiveness, the minute a child displays any problematic behaviour they are up in arms .

Why do people keep bleating on about maintenance payments? Do you realise that families (like mine) with two parents in the household also get these benefits? Genuinely, I’d love to know - what would you like to see happen? You would like me to receive less money for my disabled child? How would that improve your life?

I don't make the rules up I'm just stating how it is and DLA and PIP is non means tested BTW so you could be a millionaire and claim it assuming you meet the criteria.

Then you didn't read my post about the statistics about who actually pays the full CMS they should and why at this point because the CMS isn't fit for purpose it wouldn't work well that way