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.

Yanbu. Sometimes I think the judgement is the worst bit. Or the people who say my autistic dc are not "that bad" because they haven't got learning disabilities or that my child who does have learning disabilities isn't "that bad" because he doesn't have autism. The paperwork isn't that much fun either. I know I'm lucky in lots of ways but sometimes I just want to have a pity party because my 16 year old can't go to prom, my 17 year old can't get the bus, my 13 year old doesn't understand relationships, my 10 year old's nappy leaked last night and my 9 year old has been refused assessment for an ehcp. I adore my children but sometimes it's hard.

As a mum with a 20yo non verbal double Incontinant severe SEN son I feel you.

I have nothing to offer in terms of it gets better etc but just want to say you are not alone.

we are in the process of trying to find a day provision for him but there’s nothing out there closer than a 1 1/2 hr round trip twice a day. As it stands he leaves college this year with nothing in place.

Im tired of fighting to see he gets what he needs but have a long road ahead of us still.

stay strong all of you amazing SEN mums. We’ve got this xx

From what I saw her rent element was high

I was on full benefits including Disability elements for DD

I was also getting 1500 a month from her dad.

this was just myself and her.

I was getting around 2k benefits plus the 1500 for one adult and 1 child.

his cms never counted.

my DC is life threatning disabled with around the clock nursing care and machines. Did I feel guilty … absolutely not
now I’m back working for some sanity they are paying over 6k a month alone for her home care 🙈

So did your 16 and 17 year old become disabled past the age of 7/8 or did you willingly have another 3 kids when you had 2 disabled children? You don’t have to answer me by the way, it’s your business, but that’s what people will be thinking.

I hope and pray that you experience what us parents are going through.
the uncertainty
anxiety
shame
guilt

You sound like you have zero empathy and I would not want to be you.

All the special schools in my LEA have double in capacity over the past decade we have two primary special schools and two secondary special.school,this is controversial but i live in an area with a large minority 2nd,3rd generation of a particular cultural demographic in which inter family marriage is very common and its generation after generation of first cousin marriage and genetic condition will continue to be carried on
This obviously isn't going ti account for all children with disabilities, but I think it could be a contributing factor, where I live at least.

This was very educational educational you OP. Sounds so hard.

That’s another thing isn’t it? The fighting never stops. You’d think after 20 years that they’d have prepared something for him that was suitable wouldn’t you?!

I’m asking questions so that I can learn more. No one is going to understand unless they are in that position but I can ask and learn can’t I?

If anyone judges you they are absolute wankers. Your situation sounds very difficult xxx

This is defo a factor in some cases especially also with the medical disability world. My daughters condition and where we are based on terms of treatment is a specific ward for a specific organ and we have met many families.
some of the families have Multiple kids with the same organ issue and it is known to be caused by having parents who are related.

I’ll happily join you for that party.

You're incredible, OP, and deserve to be paid very highly for the specialised, skilled care you provide. And to receive thanks and moral recognition from fellow citizens for sticking with it. To do this as a day job would already require great skill and rare strength - to do it 24/7 with sleep deprivation and no choice to resign (though of course love for your DC shines out of your post) is something most of us won't understand. And in this particular case, if we don't understand it, we should be allowing those who do to lead the decision-making. But I think most of us will still know that properly supporting people in this situation is exactly what taxes should go towards. No nation can claim to be a world-class economy if it can't look after its most vulnerable.

You’re not serious. No way

So as a mum of a disabled child I don’t think her question is that unrelevant. We as adults do have to take some sort of responsibility for our choices.

My son's needs aren't as high but something else not mentioned is the life admin. The sheer bloody admin of it all. The appointments, the letters, the chasing emails, the forms, the phone calls, the writing everything down from an appointment, the sharing of information, etc etc...

That alone is a part time job in itself that no one ever sees.

There were many years we didn’t claim a penny for our severely disabled daughter who had to go into hospital In Birmingham (we are in london) as we didn’t know we could and we were too traumatised. My husband has a high wage so we absorbed it. We could only see every 3 weeks.
Parents of normal children have no idea of the emotional cost.
I grew up with a mother who had early dementia at 40 and there was absolutely no financial help nor help from social services.

Everyone has some personal responsibility, yes many things are out of our control / a matter of luck but there are choices along the way too

Thank you for sharing that, you are so right.

I have a very violent 5 year old who is non verbal and poo smears. Being attacked 15,20,50+ times a day is something I could never have prepared for. There is no support. He spend 4 hours a day at school and requires round the clock care. It's the little things, could never leave a glass out he would smash it, can't have plants or soil as he eats it, tries to eat animal poo in a park, you have to watch him non stop. Imagine what that does to your nervous system being on alert like that.

People genuinely have no idea or empathy.

I thought you wanted to educate… so educate us?
Or have I misunderstood and you just wanted sympathy?

(It sounds awful so you definitely deserve sympathy by the way! Not disputing that at all. Just intrigued on why someone would continue on to have 5 children, with a big age gap, when there are disabilities)

Doesn't mean you can ask such judgemental questions though

Sympathy? From you? Haha

I did say that she didn’t have to answer, and it’s her business.
This is a forum on the internet, asking questions / having conversations is kinda the whole point.

That thread is so upsetting. Everyone here who is caring, crying,, fighting for their kids, me too me too.