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 work with children with disabilities as a physio, and honestly all the parents I work with are superheroes, I honestly don't know how you do it, and still greet me with a smile on your face.
The system for support is woefully inadequate. I have lost count of the number of children I have referred for social care/respite support and its been rejected over and over again. I feel like I spend very little of my time doing actual physio treatment, and a big chunk trying to battle the system for families who are just too exhausted to do it themselves for the 28 millionth time. So we struggle to retain staff, as if we aren't being told off by a manager for spending too much money, we are being told off for social care for doing too many referrals or the parents because the equipment they desperately need is being held up by crazy processes. And this is not a moan, but a bit of an explanation as to why therapy support on the nhs is so limited - staff just don't want to work in this broken system. I'm sorry on behalf on the nhs that you haven't had better, but I promise we are trying. But that's not good enough when you are a parent wanting the best for their child. Sorry 😞

I could have written that myself. Constantly on high alert. She’s non verbal but you get to understand what some sounds mean and if there’s silence? That’s normally time to run and see what she’s up to!!!

Oh god the silence..... He's gotten in the soap power, the nappy cream or his poo are the top three explanations here.

I'm lucky my partner has a high wage but we live in an expensive area and I had a high flying job which I had to give up. So actually we claim very little only dla.. It's just something I have to live with that the path I had has changed so much.

It never ends. He left school at 18 and managed to get into an amazing college, but this is only for 2 years. When he leaves it’s a day service. We had one in place nearby that could cater to his needs, were at the top of the waiting list just to be told the building is closing and couldn’t take him. I had a good cry that day.

now he is 20 and ending his education journey we are at the mercy of the local authority and day services that are really few and far between.

anyway, after all that doom and gloom,
I couldn’t be without my little guy, he’s so happy and loving. My heart bursts with pride with everything he has and continues to achieve. He gives me so much more than the fighting takes.

dc1 we were told he was fine, until he was 9.
Dc2 we knew he had sn but we were told only physical and he would grow out of it (he did grow out of the physical delays but we then discovered he had other problems)
Dc3 was fine until secondary school
Dc4 we knew he had health issues but again we were told he would grow out of them.
Dc5 was born after a double contraception failure while Dh was waiting for a vasectomy. I asked to be sterilized after dc4 but the drs wouldn't do it. I couldn't face having a termination after 2 traumatic miscarriages. I know that probably makes me selfish.

We saw a genetics Dr before ttc dc3 and dc4, who told us that dc2 would probably grow out of his problems, that it was very unlikely any subsequent children would have the same thing. We also talked to the paediatrician who said the same thing. Dc1 was showing signs of autism from age 2 but we were repeatedly told he wasn't. We already had dc2 by this point and by the time we were ttc dc3 we had been told that dc1 didn't have autism by the hv, gp and the paediatrician. When I had dc4 we had dc2 who needed a wheelchair sometimes and got tired easily and 2 seemingly healthy children.

I know it looks like we just kept having disabled children but it wasn't like that.

Me too

Yep I have to lock up every tooth paste, shampool ,medication washing powder, you name it if it's not locked away it gets thrown down the sink
He's really sneaky too he waits until i have gone to the loo or something and then looks in my usual hiding places 🤣

I'm sorry, OP. That sounds horrendously difficult.

Clear description of what many of us face daily and nightly. We do the best we can to support our children. can’t help much but paracetamol suppository game changer when ill x

YANBU, OP - most people have no idea what it’s like. I don’t have a disabled child myself but do have a sibling with severe learning disabilities including autism, so I have some understanding of how hard it is. You shouldn’t have to fight for scraps of support. I absolutely don’t begrudge my taxes going to families like yours - after all, the alternative is presumably that all these kids would be in local authority care, which would cost even more.

One thing that makes me despair when these threads come up is how many fathers just seem to fuck off and leave their spouse to cope alone with a severely disabled child. What is wrong with these men?

Thank you for your reply. You sound like a lovely mum!

I don’t think anyone on that thread said that the OP didn’t have a hard time. But what came over to me was that the children's parents should be stepping up, with the government making up the shortfall - not that the tax payers are responsible for the full bill. What stuck in my throat, was that it was obvious that the father was paying, but the OP was not offsetting that payment against the UC.

She was claiming so much more than is sustainable, completely out of order, and as a consequence others in need will suffer

"What stuck in my throat, was that it was obvious that the father was paying, but the OP was not offsetting that payment against the UC."

Because it's not counted as income

His maintenence isn't taken into account in regards to universal credit ,so she's doing nothing wrong
Why would someone claim.less than they are entitled to ?

Maintenance isn't counted towards income, for good reason.

People in need suffer due to the government funding their mates and themselves, not because parents are claiming what they are entitles to.

And that is what is wrong. Whatever it costs to bring up a disabled child, minus what the father has to pay and the remainder is what the government should pay.

CMS needs to have more power, and absent fathers should pay a sensible amount, they shouldn’t be allowed to pay the minimum and then go off and have a new life with wife number 2, 3 and 4

YANBU. My child is 21 and needs as much, if not more, personal care and supervision than a toddler. I’m 60, and it is hard work dressing someone bigger than you, being on the alert for them going to the toilet so you can clean them up before they smear, surviving on broken sleep, the stress of their loud stimming, and on and on. I don’t think people who don’t live it can imagine it. My husband & I are still together, but a disabled child breaks so many families, and it is usually the mother who is left alone. It is all consuming. We both work, me part time. If alone it would not be possible. That thread about the OP’s benefits was horrible.

I

‘Why would someone claim less than they are entitled to?’

em maybe because it’s not free money? The taxpayers are paying for it, it’s not a bottomless pit of cash

Than you need to complain to your MP about it not bitch about what someone is legally claiming.

Maintenence used to be taken into account.

The men didn't pay, the women and kids got the lesser amount, CSA failed to chase it up, meantime kids were going hungry.

Maintenence being taken into account is a conversation to have when the fucked up system is sorted out, which it never will be because half the government are screwing their exes over too.

It's the isolation. I tried to get my little one into a local nursery/preschool but no setting would take him because his care is too complex even though 1:1 funding had been agreed. He needs frequent suctioning to maintain his airway, he has complex epilepsy and has had prolonged seizures, he's tube fed, has medications every four hours, day and night, he's blind. He can't sit without support, he needs lifting or hoisting for all transfers, he can't roll reliably so. He has dystonia which causes pain and muscle spasms day and night. It's just me and him, I can't remember the last time I had a full night's sleep.

People don't understand how difficult it is just to leave the house, day to day things like going to the supermarket become problematic, especially when they are too big for the baby carrier trolleys but not big enough for the specialist trolleys. People stare at him, children stare at him.

I claim DLA (but not UC) because everything about having a child with disabilities costs more, from his adapted clothing to the sheer volume of washing. I can't go into a regular toyshop and buy him a toy, he doesn't understand how to hold a toy much less play with it so most of his things come from specialist suppliers. I bought him a new off road buggy at the cost of £3k recently because he absolutely loves going in the woods and his NHS wheelchair is great but it cannot cope with the places most children of his age can go and he wants to do those things too. Without this buggy he wouldn't be able to go on the beach, it's those little things that people don't realise until they walk in our shoes.

Complain to your MP than ,I'm.well aware it's tax payers cash I used to be a nurse I was a tax payers for many years
But tax payers don't get to dictate what their tax money is used for

I think it's just ignorance rather than nastiness. People just have no clue how severely autistic children are. I worked in a Sen school with ten autistic children in a class it was the most exhausting challenging and hardest job ever. We often used to say how on earth do their parents cope. There were lots of siblings too !!! These children are kept away it seems and most people do not know they exist and how hard it is. I actually think I have some kind of ptsd just from working there. Some of things I saw and had to manage were incredibly upsetting and very difficult. People just have no clue. Wishing you and your daughter well op lots of hugs to you

My issue is that the men must pay. Somebody needs to grow balls and make this happen. I don’t know what the answer is, but so many men get away with paying a pittance and the tax payer picks up the slack. That is not sustainable.