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 hear you! It's hard and it's lonely.

I'm not a single mum as such but my dh works away most weeks so I definitely solo parent.

I can't work rn there is constant need for me from my nd kids or appointments I'm currently appealing school places and it's just a nightmare.

We're a 1 income household my dh earns literally 1000 pa over qualifying for any help from uc. 1 child does get he dla others application still processing and carers allowance but I'd never begrudge anyone taking help ever people are weird and those who see a disability and think money clearly have no idea how much money things for our kids cost like nappies at 5/6 and special clothing to avoid smearing and have no labels buttons or seams ect the amount of electrical get broken but you have to replace cos your child can not be without.

I hope you're OK and still have some support around you, like I said not single but definitely solo even on a weekend cos we need routine and some normality, mum does things so always have to do things.

You're doing amazing and your little one is clearly loved and cared for. Itw hard bit please make sure that ehcp is exactly what it needs to be not just OK. Please
I hope you've got some support xxx

Posters don't want your life ro be improved,
I have only read bits of the other thread ( as i don't think my blood pressure could take it ) but some posters would like people with disabilities and their carer,s to have the bare minimum.

I saw that thread earlier before the crazies came in. My first thought was it sounds a lot but with a child with disabilities you will have high needs and costs. And no one would put up their hand and say I want a child with disability/ties because I can get more UC. No one. I refrained from commenting because I do not mean children with special needs or disabilities are unwanted or desired, just that its really tough for most families and the money they get is to help them offset the fact that they cannot work or work full time and have extra costs that a family with non SN needs doesnt have.

For some of those crazy responders, do not judge a person unless you have walked a mile in their shoes. Yes the money seems a lot (its certainly more that I make some years, more than my husband makes) but there is so much more behind that and so much more that such families experience that many wouldnt understand, certainly wouldnt want to take on in exchange for "high UC". Am so sorry OP that the world can be full of people without compassion

But where else would they get to bitch about single mothers and disabled people and benefits claimants simultaneously...

Honestly it's like a fucking bingo card game on MN currently

Don’t shoot the messenger. Highlighting the issue doesn’t mean I’m responsible with coming up with an answer.

Personally i think we need a thorough investigation into the rise of children with SEN but it will never happen as it would be viewed too suspiciously or nefariously.

I think some posters would like those with disabilities to cease existing.

I was on that thread and disgusted By so many replies they were jealous of the money :Benifits the mum got

The op was claiming what she was entitled to for her kids

Any parent would do the same

And yes sure you would all
Give up all the money in the world to have your children with out their issues /disabilities

Doesn't mean you don't love them the way they are

But having friends , family and caring for a sn child via work I can see how hard parents esp single parents have it

I totally agree. The CMS needs to grow some and make the absent parent pay what they should be paying.

I think your right
Or if they have to exist they should be locked away so they are not seen or heard

Yes and that would be ridiculous. I’m all for meeting needs but if those needs are met then it’s money that could be redirected to another area which has a greater need.

I could not believe the sheer heartlessness of the UC thread either. People didn't seem to realise how impossible it is to get a job when you have children with disabilities, how expensive it is to raise them and how tough people's lives were. The lack of empathy was awful. Surely that's what the welfare system is for.

@SEmyarse DLA is awarded based on care needs and how much additional care a child needs compared to a ‘typical’ child the same age. The process of filling in the forms and providing evidence is pretty long and exhausting. There are different ‘rates’ of allowance awarded. If your daughter only had a slightly higher level of needs (and no overnight care needed etc) then she would either not be accepted or only be awarded the very lowest rate of care which isn’t a lot of money.

Well obviously if public statutory expenditure goes down, public investment can go up. Money not spent on people who don’t need it can be redirected to areas that do - maybe more SEN school places… Better research, respite.

Vile isn't it ! Yes and very sad

I hear you, I have 3 with sen all very different in their abilities.
My eldest is just about doing ok, has his problems but is managing.
My middle child goes to a specialist school, has ASD,dcd and hypotonia and has learing disabilities and they need a lot of help even though they are 17.
My youngest has asd,adhd and he has a 1to1 and atm is only in school part time.
He is violent and lacks awareness of his or others safety.
He can be the loveliest child though and I see glimmers of love that gets me through the day.
Its difficult so bloody difficult.
You are doing an amazing job, and I hope those people on the UC thread that are sticking their noses up don't have to be in a position where they are looked down upon and judged just for having children who require help.

You've described my dad to a tee. I think until anyone experiences it, then they'll never ever understand.

The constant pressure is overwhelming and exhausting

Another solidarity hug and a big “fuck you” to the majority of pricks on that post.

its little things like the impossibility of getting wraparound care for a Sen child. Just doesn’t occur to most people the impact that has on your ability to work.

I hear you! My own two children are nowhere near as bad as the challenges you face with your child. However, they both classed as severely disabled and attend an SEN school.

I can't imagine by eldest being able to hold down a job when they are currently mid teens and unable to dress or wash without extensive help/prompts. They can't go out alone because they don't know how to keep themselves safe. I do worry about how they're going to become independent (and it's not for want if trying).

I'm utterly exhausted. Experiencing more and more health problems, likely because I've barely had a break in 16.years.

I applied for a 10 hour a week in person job recently and I'm not sure how I'm going to manage that when my kids don't always cope with school and/or the school holidays with no childcare. They're teens but not safe to be left alone.

I work 16 hours a week from home at the mo. Any more and I crack up because I'm so utterly exhausted from my caring role.

Every parent giving up their lives to care for their disabled child, as opposed to the disabled children who end up in care, are saving the public statutory expenditure hundreds of thousands, sometimes over a million pounds a year

Sounds like they are already doing their bit tbh

eta: that's the savings per child per year

It would cost far more to lock them all away though.

I literally fall asleep sitting up often from sheer exhaustion.

Meant to quote x2boys

Just like that £40m we saved with brexit went straight into the nhs like we were promised 🙄. I need every penny I get to give my daughter any kind of quality of life. Who is to decide how much should be skimmed off? Couple of hundred maybe and she can go without nappies? Maybe I don’t pay my heating bill or buy her ketogenic food that the hospital makes her eat. Who is going to look into each case individually and how much would that cost? Argue for better wages, argue for less government spending on crap, argue that the billionaires pay their tax - don’t take money from the hands of disabled children. Your local mp probably charged more to their expenses than my daughter received last year.

The maintence argument is also wild. The lengths so many men will go to to shirk paying child support or abruptly cutting off funds. Or even the good ones whose circumstances change - have you any idea how long it takes for changes of circumstances to be updated for your benefit payments?
why are so many of you hellbent on making life difficult for societies most vulnerable?

Of course but are least we as parents couldn't be seen as benefitting in anyway
Because obviously we are living the dream with huge amount of disability benefits " free cars etc."