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.

You deserve every single penny you get and more. ❤️

YANBU OP, this might sound like I’m trying to rub your nose in it (im not) but when I read things like this it makes me so grateful for my 3 ‘typical’ children. I couldn’t cope with this… I mean I could, & would because you do anything for your children but it must just be utterly exhausting emotionally and physically. I 100% support my person taxes going towards families like yours… this is what it’s all about isn’t it? Supporting the vulnerable …

What annoys me so much is that the men get to walk away. Barely verbal severely ld adult here but lives with carers.

100% this

Ok I started to read the other thread, got as far as someone complaining how tiring it is working full time. I really don't want to get into competitive tiredness, but when you work full time, are up with your child until 1am, get woken up at least once after that usually between 3 & 4am, face EBSA, violent meltdowns, having to organise work around various appointments and meetings...

At one point I didn't stop between 8am and 1am - I worked through with no lunch break to finish earlier to take over looking after DS from DH so he could work until 11/12. Ended signed off work for a month.

We get DLA for DS, and we'll be seeing how much UC we can get as well. I'd prefer not to need either, I'd prefer it if DS was happy and able to go to school full time but that's not where we are.

Some of the pushback on that thread was from people who earn similar amounts and are consistently told on MN that they are not allowed to ever complain about financial difficulties regardless of any mitigating circumstances. As someone who is in a higher earning household, but lives in an expensive area and has a child with additional needs (though not sufficient to qualify for benefits), I share that frustration. Not so much that the the op receives support, but that on a similar income I am expected to be
comfortable, never allowed to complain and in fact am told I really should be contributing more tax.

other nasty responses were from the same people that think anyone with more than £30k per year is rolling in it regardless of where they live or what other obligations they have, and are greedy degenerates if they can’t comfortably make ends meet.

yanbu OP. Carers of disabled children are heroic in the efforts they make for their children.

I don’t have disabled children but my best friend’s daughter is severely autistic. She had to go to the SENDIST to fight the local authority for 1:1 care in the EHCP, which cost thousands of pounds in experts fees (which she was fortunate to be able to pay due to an inheritance but the process was incredibly distressing).

Everything is a battle for her. She gets no support without having to fight for it. Every appointment has to be chased several times. Even just taking her out somewhere, she cant just go she has to check what the SEN inclusion is/ask for adjustments/generally feel like a nuisance and that wherever they go, people would rather they weren’t there at all.

my friend was a fiercely Intelligent, ambitious, vibrant and happy person. She is an exceptional mother but caring for her daughter has broken her, physically and emotionally. I don’t know how much money she gets but fucking hell, if it means financial worries are one less thing she - and the other incredible mothers on this thread - have to burden them, it is money well spent.

I am in awe of all of you who have spoken of the difficulties you face in parenting your children. They are lucky to have you and I am sorry you have to deal with such shitty attitudes 💐

Lots of posters talking about offsetting maintenance. I don't get it. How would this work? I assume the maintenance amount does not depend on whether a child is disabled or not. I mean the maintenance is not more because a child is disabled right? And obviously if your child is disabled your costs are a lot higher, and maybe you can't work or can't work full time so the benefits or uc are what is meant to pay for these costs? If it was offset against maintenance wouldn't families with disabled children wnd up with less money than families where there are no.children?

However it is wrong that maintenance from absent parents is not taken into account. It is income.

I don't get maintenance from my ex. I will receive £250 UC this month which basically covers the cost of my childcare. It does seem odd that someone getting £1000 a month from their kids' father would get the same amount as me. But I imagine it is to do with it being hard to administrate. What if the NRP's income fluctuates, so the amount changes each month, or what if they suddenly stop paying. The RP suddenly finds themselves without that income and has to wait 5 weeks for any money from UC. In the meantime it's the kids that suffer.

Because DLA is not means tested I believe the suggestion is that single mothers with a disabled child get less money than a couple with a disabled child

Because we still apparently want to punish single mothers for being the hussies they are and why can't they just hold onto a man goddammit (the reason being, of course, that men are less likely to stick around for sick/disabled wives and disabled children)

I do get the general comment about mothers on UC having their UC adjusted by maintenance

But then I think some posters think that if a person on UC gets £200 maintenance a month their UC should go down by £200 per month. Which again would penalise them against couples.

Because if one person in the couple was earning as much as the person claiming UC and their partner was earning £200 per month, their UC wouldn't go down £200 per month. But hey got to punish those morally dubious women 🤦‍♀️

So it would really only be relevant in the very rare occasions a woman gets a significant amount of maintenance. So once again rare enough that it would probably cost more to take into account than it would save.

Op I think your doing a great job especially since wee one is in mainstream - other parents have no concept and you feel the parents are judging you and oh the envy when you see the kids playing nicely and your dc is unaware or your trying to stop them smearing.
There seems to be more of a community in special schools for parents (well our nearest that relative attends)

I have three disabled children. And yes, they did become disabled after I'd had all my apparently perfectly healthy children. Some genetic conditions don't emerge straight away.

Yes thank you!!! I found that thread too late and couldn’t believe what people were saying. How they’d love to have a disabled child so they could have the money? How the OP should volunteer in her ‘time off’. Absolutely infuriating and shows a complete lack of understanding and human decency. Even worse, the people blaming her for having more than one child! Argh!

I spent some time caring for someone with Down syndrome. I think people don’t recognise the sheer exhaustion, physically and emotionally you get from this care.

I used to dream that if I won the lottery, I would get a beautiful old house with lots of green space and turn it into a respite for families with caring duties.

There'd be family rooms with a night nurse for the child’s needs so parents could sleep through, activities and and 121 support for the child during the day whilst parents could select their own activity - spa, meals, films, walks or activities that took them out of their worries - like woodworking.

There’d be onsite advisors and you could just hand over the paperwork and they would sort it all out, someone would be redecorating your home as you wanted it with all mod cons and adjustments so when you returned it was perfect and you could come every couple of months for free.

Oh, and there would be lots of animals😀

Please don't ever tell parents of disabled children that you couldn't cope with it. There's nothing special about parents of disabled children. You cope with it because you don't have a choice. Yes, you would cope with it because you would have to.

It's the same thing with bereaved parents. When people say they couldn't survive it. Yes, you could. You wouldn't have a choice, especially if you have other children to support and live for.

Sometimes you just do it. There's no choice.

@Takeaways with respect that is what I followed on to say.

Yes, I thought it was worth repeating for the masses. :-)

I know it's meant to be a compliment in some ways.

YANBU OP.

Some people don’t have a clue.

Nobody wants their child to be born this way. It’s horrible, mentally and physically draining.

I remember being told off in one of the autism “support” groups for wishing it to go away. Apparently I’m a bad mother for not loving my child the way he is as it’s his autism that makes him so “speshul”.

I love him to bits, he’s a lovely child but watching him struggle makes me want to take his autism away. It’s hellish for all family involved and has no positives at all.

Best wishes 💐

You deserve every penny that you receive. Every. Single. Penny.

I don’t know when we, as a society, became so gullible and so easy to manipulate. Those with wealth and power tell us to be angry at <insert vulnerable people> and off we go frothing at the mouth. It keeps us nicely distracted so we avoid any form of critical thinking about the wealthy and how they avoid paying billions in taxes.

I would recommend a specialist school. I’m on the other side of the world but saw a British show once (comedy about politics/public service) where the actor had a special needs child in mainstream then on to a specialist school and they said “inclusion is an illusion”. That has stayed with me over the years. At a specialist school it’s less isolating for parents too, no shaming at the school gate, and it makes me feel better when the mums of older students say their child used to do that but outgrew it. It gets easier in that issues like toileting and sleeping and eating improve but they are replaced with other issues too. I hope you are doing ok, it’s not easy.

Thank you for sharing this. YANBU and deserve every penny you get. x

@Babadoobiedoo nasty responses are not okay. But when you are on less money then over £30k does look attractive. Some people are in real poverty and it is hard.

MN is particularly bad for disablism. It is on threads all the time. I challenged stuff on another thread earlier today.
So sadly it does not surprise me.

Also spare a thought for those who have dependants who aren't their children. E.g. disabled siblings. They don't get half as much financial help, yet their costs aren't any less.

I have one of these "fully functioning" autistic children and claim DLA for them. They may be in mainstream school and academically fine but it's still a very isolating life. No friends, no play dates, no party invites, we can't take them on holidays/days out because they absolutely hate it, anxiety, insomnia, only one family member willing to babysit them, limited interests, a very restricted diet, not great at self care... But OK, they're "fully functioning" because they do OK at school and if you met and spoke to them for 5 mins you probably wouldn't be able to tell. I'm not saying it's the same as someone with complex and multiple disabilities that AT ALL but it's also really not the same as parenting an NT child.