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.

As I mentioned in another thread, I couldn't believe some of the posts on that UC thread, what some people posted was unbelievable.
I hope you are having an ok day x

So many people on here don’t care and think “oo money”. They see the money and want it but don’t appreciate the caring responsibilities. I am grateful for what I have and I would not swap to have a disabled child (or children) for money. I’m more than happy for my tax money to be spent helping those who have disabilities and their families have what they need. I am a net contributor; I’d pay more tax for better quality public services for all too!

I hear you ,I have a non verbal 14 year old son some posters are incredibly ignorant.

Yup I hear you too, I have a 12 year old DS with asd, we are lucky to get away for a holiday during the summer holidays which usually is disastrous but I have a NT child to think of, the rest of the holidays is mainly stuck indoors. It is incredibly isolating people just don't get it.

I'd give up all the UC, DLA and even the Motability car to have a 14yo who doesn't remove his own nappy and them smear all over the bed and bedroom whilst I'm asleep. (Yes, I have now discovered Houdini sleepsuits!)

I'd give it all up for our son to be able to tell us when he's in pain and give some indication of how/where.

I'd give it all up to have a son who can follow an instruction. In fact, it'd be nice if he could even hear that instruction and defiantly not follow it.

And we have it easy. We only have one child to worry about, and two parents.

@TorturedPoetsDepartmentAnthology
This, and also apparently the difference between disposable/extra money and non disposable (literally can’t think how to put it any more simply).

You could be getting 1 billion each year but if that’s also what your childcare rent etc etc costs too then you’re not privileged, despite how many people will hear the figure and whinge about how much less it is than they get to spend on holidays or clothes.

(ignore my failed first attempt at a response that makes sense)

Thank you , I’ve just had a cup of tea which has calmed the headache I got typing all of that out. Have also changed the 3rd nappy (number 2) and I’m sure she’s trying to catch me out so can smear haha

That sounds exhausting and so emotionally challenging, but most people won't connect that with monetary benefits. It's not compensation.

The ignorance on the UC thread was horrifying. Posters seemed to look at the amount of money, completely disregard the disabilities the children have, and decide it's not fair. My nephew is 7, non verbal, needs 121 care. His disabilities weren't diagnosed when his little brother was born, so my sister (BIL couldn't cope with a less than perfect family and left, he pays the minimum amount of CMS) is constantly juggling the needs of both children and relies on help from universal credit, because she can't work full time. If I thought anyone was judging her, and calling her a workshy scrounger, I would be furious.

Yes I forgot to mention how lonely and isolating it is. Most people won’t get it unless they’re going through it themselves or they’re seeing it first hand.
It’s sad when you know you’re child won’t be taking part in sports day/trips or will have a speaking part in a play.

I hear you OP and I understand ♥

That sounds hard and I doubt you have it easy. Maybe easier but then again are his sensory issues ‘worse’ than my daughter’s? Is he more defiant as he’s older and has better understanding. Does it get easier or more difficult as they get older? It’s really, really hard work and I hope these posts will give people an insight into what it’s like (although maybe not as nearly 20% have voted YABU)

My daughter is like this now and she’s 3, down to even taking off her clothes and the poo smearing.
slightly verbal but repeats one word phrases and sings/repeats the same lyrics over and over. I can’t imagine what the future looks like, for her.
im currently in the process of applying for dla and my eldest son is disabled too, mild CP and severe epilepsy. That thread with the lady sharing her uc elements, the posters were vicious

Aww OP it sounds really hard. People can be so ignorant. I mean fair enough they can’t really understand but they should be more understanding and know that life can be extremely hard with disabled child. Sending you love OP

I have two DS with severe learning disabilities and I hear you! In terms of holiday help, we have some social care funding for carer support and holiday clubs- it is worth asking for a social care assessment.

Yup, and imagine if that figure was passed onto the state. Imagine if every parent gave up and said I just can’t do this anymore! Some of these children need two to one care…

I understand, OP. It’s unbelievably hard. I could write a book….

Is your daughter in a mainstream or special.schopl?
I'm lucky my son has always gone to a special school so is fully included in sports day etc. .

I honestly just try and get through each day like yesterday never happened (if that even makes any sense). I used to get so upset worrying about the future but occasionally you’ll hear of a child with learning disabilities and then going on to live an independent life. That’s what gives me hope, if them then why not my daughter?

Sounds crummy.

I'm reminded of a TV show starring David Tennant called Something about Rosie - or similar - who was eventually diagnosed with a v rare condition.

I couldn’t really believe what I was reading on the UC thread. Obviously a lot of it is based in people’s own financial worries and vulnerabilities but how could you possibly begrudge disabled children and their families financial support? How can you possibly argue that they shouldn’t get anything beyond some food and clothes on their backs for sake of ‘fairness’ - as if anything about having a disabled or unwell child is fair?! Crabs in a bucket to the extreme and very depressing to read. I don’t have to have a disabled child or a particularly good imagination to realise how expensive, stressful and isolating having a child with disabilities must be. To you OP. I’m sorry for how upsetting that thread must have been to read.

Mainstream at the moment but might have to consider a specialist at some point

@FlyingTigger thats a really good way of looking at it and I’ll try my best to think of that too, I just hope she can be independent one day or even learn to use the toilet.
thank you for sharing your experience it’s comforting to know I’m not alone.

"There she goes" ,it was excellent it made me laugh and cry in equal amounts
The writer based Rosie in his own severely disabled daughter so totally got it imo.

That thread was insane. I commented on it a couple of times but honestly thought what’s the point. I also have a 6 year old girl with SEN and yes I claim benefits too! I think it peaked when someone told the op ‘I hope you realise how lucky you are’ 🙄🙄