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've just read the thread you linked in the OP and I'm gobsmacked at some of the replies.

One poster says she'd happily trade Epilepsy for UC and other posters saying how having children incurs a debt on society.

I fucking despair. I really do.

JFC.

What are we paying our tax for at all if not for situations like this? It’s a welfare system, a safety net. Any one of us could become disabled, anyone who has a child could have a child who is / becomes disabled. Would you not claim benefits you were entitled to in this situation? The OP has already explained the expenses around having a disabled child. I know families with disabled children who I presume are all getting financial support. Believe it or not, they are all far from splashing in cash. Having a severely disabled child is not some get rich quick scheme. Your posts are so beyond offensive. You’re talking to real people with real families in this situation. You are not struggling for money because a child with Down’s syndrome gets some DLA.

Not only are you doing an incredibly hard amount of work 24/7 you are also saving the taxpayer a fucking fortune! Which tends to be forgotten/ignored when it's easier to whinge about people on benefits....

www.google.com/amp/s/amp.theguardian.com/society/2022/apr/18/english-councils-pay-1m-per-child-for-places-in-private-childrens-homes

There was a poster on that UC thread who was going to be writing to their MP about wanting maintenance to be off set against benefits...of all the country's problems, that's what they would write to an MP about...and announcing it on a thread from a poor mother battling for her 2 disabled children. I am still aghast at comments on that thread hours later!

OP I hear you. I would say I've no idea how you do it, but I do know, you have no other option. I'm only dealing with severe autism and ADHD in my 17yo DC and I'm now counting my blessings.

My heart goes out to you. I'll be thinking of you. It's SO tough

Thanks @FlyingTigger for this thread. People just have no fucking clue.

My 14 yr old DS is autistic, PDA profile, and almost certainly ADHD too but still waiting for diagnosis on that. I think a lot of people who meet him think he's fine because he is super verbal (always has been) and very academically able. He is polite, charming, funny to talk to. Adores animals of all types and is always kind to them.

But he is so impaired in so many ways. He can't interact with peers without adult support. Never been invited to play at another kids house or been for a sleepover. Loves board games but loses the plot and throws the pieces if he loses. Cannot interact with younger children safely, because he just can't make allowances for them being younger and gets frustrated with them for things they can't help. He can't remember anything from one moment to the next - he's fucking 14 and I still have to give him single step instructions every single morning to get him ready for school. He does things like forget to take his pyjamas off before getting dressed. Can't properly interpret what he is seeing in a mirror so needs me to actually show him where the food is on his face, or he just doesn't notice it. Fluorescent lights cause him to go into sensory overload - his eyes glaze over and he starts to shut down, gets very confused and bumps into people/things. Same with too much background noise, or being too hot (which he doesn't notice happening, so won't think to take off his jumper for example!). Can only manage 3 days a week in school (has a mix of home and online tuition the other 2 days). Has an echp with full time 1-1 support specified in it - not an easy thing to achieve but every professional who has assessed him agreed it was necessary if he was going to access education.

Keeping him calm and safe is a full time job. My entire life centres around it. I'm very successful. So successful that people are often really shocked the first time they see even a glimpse of what happens if a ball is dropped and something goes wrong!

And yep, I claim benefits. He gets DLA (middle rate) and I am just switching over to UC from tax credits. As it happens I do work, I'm self employed and even though I don't have to work because I'm a carer, I choose to. I enjoy it. But no way could I hold down a job as an employee!

Sorry but I do agree with them. If in theory you’re receiving 3k a month maintenance why should the taxpayer top that up even further? It should be means tested. There’s no practical argument for it beyond a notion of arbitrary ‘fairness’ when 1 in 6 people are not working and we are skint. And please don’t come back with ‘Tory corruption’ because while all that is a massive issue, recouping the money wouldn’t make a dent in the sums needed to put all our services right.

@Pep12per That was me. I own up to it. I have every sympathy with people looking after disabled children. Every single person is doing an amazing job.

However it is wrong that maintenance from absent parents is not taken into account. It is income. I had no idea prior to that thread that it wasn't included and I don't agree with it.

And still even after reading the original post by the lovely mum on this post people are still showing a complete lack of empathy. It's really very sad how people are. I wouldn't begrudge any mother with a disabled child ANYTHING ever because life is just so very hard.

Lol on that thread someone questioned why I should get DLA because ‘how does having an autistic child cost more’

Then, despite me outlining his high care needs, said there was no excuse not to work fulltime because he can ‘go to a childminder’ 🙄😂

Yeah childminders are queueing up to take on disabled children who need 1-1 care and can't safely interact with other children 😂

The ignorance is staggering.

EDIT: not suggesting your DS needs 1-1 or isn't safe with other children, I'm talking about my DS here!

People really don't understand the broadness of the spectrum .

The OP of this post should perhaps consider how tone deaf her (?) post is in a thread about disability, where a lot of people are working their arses off and have to look after a child who will never be independent and will need to be cared for for the rest of their lives.

There is no taking away from the fact that she can never know what it's like being a parent to a child with a disability, and that no money in the world would ever make up for the fact that her life will never be her own again. Will she refuse to answer the question: would you rather have the money and have a disabled child too? Or will we get an honest answer

I genuinely don’t know if some people are just ignorant or downright nasty.

Of those who are supposed to pay child maintenance 36% don't pay anything and of those who do 64% don't pay the full amount that they should

That's why it's not taken into account. Not because single parents (mostly mothers) are raking it in but because non resident parents (mostly men) are failing to pay leaving a lot of women and children in potential poverty

If we had a better CMS system with proper penalties for non payment/partial payment then I would see the argument for it being taken into account

I can't imagine many child minders wanting to care for my 14 year old who is cognitively around 2 or 3 .

Did you know that she's a gestalt language processor? Sorry if you know all about it and I'm teaching grandma to suck eggs!

That is one of the hardest parts for me..my DS went to mainstream primary and never took part in any shows, assemblies etc but I still went along just to watch him sitting at the side..he had one incredible teacher who got him to say a speaking part during one and I was so proud of him, no other teacher ever encouraged him..he is now in an unit in a mainstream secondary and I now finally see his worth a bit as he gets awards when he has achieved something..I still have one DS at primary but cannot wait until I never have to do the school run again..watching kids skip off to the park/playdates etc broke my heart..I hope you take some comfort in knowing you are not alone, I feel for you, so many of us do..

I honestly don’t think that anyone was saying that having a disabled child was a walk in the park with massive benefits. But parents need to step up. It is not down to the community to solely bring up that child. Over £3k a month in benefits plus a father’s support is ridiculous and needs to be justified. What needs to be looked at is the actual cost of that child monthly, minus the father’s input and the rest covered by the benefits. The father should pay at least 75% of his income to support his children.

People are truly ignorant, but also it's easy for someone with no experience of something to just genuinely fail to understand it.

Until you have to deal with it, you cannot comprehend how badly the system fails disabled children.

If my child could have accessed the right school and the right therapeutic support at 7, when it first became evident that he was struggling, things might be different for us. I might have been able to stay in full time work for a start. But instead the creaking shitshow of SEN provision took 5 years to agree he needed specialist provision by which time he had severe trauma caused by isolation, restraint, and unmet needs. I had been forced to leave my job to be on call all day every day for him because school couldn't cope.

I know a disability social worker who has had to quit work because her disabled child has no school place. LAs just don't care, they have no money, they have to be forced to provide our kids with an education.

Early intervention and enough special school places would make a lot of difference to many families. Not to all - but to many.

What from anything you’ve read here or on the UC thread has suggested these parents aren’t stepping up and are expecting a community to raise their child?

Also I’m all for fathers paying for their children but 75%?! So someone bringing home 2k post tax should be living on £500? That doesn’t sound workable …

Please start applying now, there's a three year wait for the SEN school I work at which i doubt is uncommon. So many parents just don't realise how long a waiting list there is.

The issue is that you have disabilities and disabilities. My first husband was severely disabled, pretty much paralysed and on a ventilator for the last 10ish years. We had to fight for everything and I totally understand the exhaustion of everything. I would be up 10 times a night doing chest physio, and then all personal care in the daytime. We sometimes had carers but often couldn't recruit so I'd do it all for weeks on end. He died 18 years ago.

I have 3 children, the middle one definitely has issues but nowhere near the same scale. We did some therapy etc when she was tiny but gradually withdrew from services as she got older and refused to co-operate. But she did have a social worker etc who consistently told me to apply for benefits for her. It was a slap in the face tbh after all the fights for funding for my husband. I never applied but they insisted she would be eligible. But why, what costs were incurred by her 'mild autistic type' ways? She's now married and in full time employment. It seems unlikely she'd be this independent if I'd agreed to label her as disabled (or if she'd agreed to it).

I know quite a few people who receive extra benefits for apparently mildly impaired children. Of course I don't know the full ins and outs of their lives, but there certainly aren't enough differences to justify hundreds of pounds per month. This money should be reserved for those that need full care packages, of which there are many on this thread.

Exactly. There isn't the childcare available, and where it does exist it costs a small fortune (far more than UC would pay in childcare costs!). It's cheaper for the state to pay parents benefits to stay at home and provide the care themselves.

Your experiences read exactly like my life. 5 year old son, non verbal ASD and LD. Had to fight for everything and it is still poor. He has only just got in a special school after a 14 month wait. I work but I am exhausted and hanging on by a thread. Son was up from 11 to 4 last night.

People are incredibly ignorant. DLA basically plugs the gap of failing services and enables us to buy what he needs for his disabilities and sensory needs without it affecting our finances and other children negatively. It is not enough for me to give up work at all like some people ignorantly assume.