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 think it was the people going on and on about how much money it was without factoring in the fact that the OP had TWO children with disabilities I genuinely don’t think anyone would swap with her if they knew her reality.

Honestly, tomorrow is not guaranteed. Sounds extreme but imagine a piano falls from the sky and crushes me tomorrow!
I remember reading on here before how a mother wished she hadn’t wasted so much time worrying as it took the joy out of the moment. There are definitely moments of joy and there have been improvements so try and focus on those if you can xx

I really feel for you. I'm so sorry it is so hard and you do not get wraparound support. You sound such an excellent parent and human being. I taught in a special school and not every family was as supportive as you sound. Your daughter is blessed to have you.

I agree with you 100%. I bet not one single person would want to swap if they truly understood the reality. I didn't see the other thread. I hope you're ok.

I really don’t think it’s vaccines. Children have been vaccinated pretty much to the same schedule as now for 30+ years.

I do think at some point there will have to be some kind of public inquiry as to why there are suddenly so many children fitting this profile - non verbal, autistic, little understanding, no danger awareness and so on.

I can’t profess to know what’s causing it but something is.

I don’t mean this to come across wrong so forgive me 😂🙈 I think a big reason this is being highlighted now is because, so many people believing sen is over diagnosed and everyone assumes that anyone claiming are these fully functioning autistic / adhd children the councils keep piping on about.
infact it’s like no other disabilities exist anymore, the whole focus is on sen disabilities.

the issue with this is that actually they are not all sen / autistic / adhd and that when they are these there is such a spectrum and I suppose the new guidelines removing levels of autism hasn’t helped people who know nothing about this have made this even more harder to understand.

i tend to stay away from the threads because it all turns in to sen when there is mutiple other disabilities out there.

Thank you , that’s very kind.
Lots of people have things going on and in many ways I’m lucky to be a single parent and can just focus on her (exH was bloody useless ha). It’s mentally exhausting but you get used to it after a while.

I don’t blame you for thinking how you do but I do suggest you spend time volunteering in a school with children who have SEN just to see how broad the spectrum can be. Eg, you might have a highly academic, even gifted child but struggles with crippling anxiety and cannot maintain friendships. Bullied relentlessly to the point of self harm or even suicide.
Then there are those who ‘mask’ at school in order to fit in but come home completely exhausted and burnt out.
Then there are adults with anxiety or depression, those burnt out or with other MH conditions. I think it’s hard to imagine unless you’re living it.

I hear you, OP.

We've lost so much compassion as a society, it's depressing.

Yes a lot more children have very obvious levels of high needs. In some classes it’s 2 or 3 children.

and re the vaccine (I saw that comment too)

Yes another thing you’ve reminded me!
the guilt
Should I have avoided the vaccines?
Did I eat badly during the pregnancy? Was I too stressed? Am I doing enough for her? Should I fight for a specialist school? Should I be paying for more therapy?

You are missing my point I didn’t say that’s how I felt I said that’s where I think the issues of peoples opinions are coming from.

I have an extremely Complex disabled child and sen needs thanks so don’t need to go anywhere.

How many people who are fortunate enough to have healthy, NT children would really swap their child’s health and NT for money? If they say they would swap for an extra few hundred quid, I’d worry they aren’t good parents! That’s not to say there isn’t great value and importance of those who have disabilities, we are all part of society. With the exception of those who choose to foster or adopt children with additional needs, the vast majority of parents would not choose a child with an illness, disability, sensory impairment or ND condition.

I do feel sadness and frustration for parents of children with disabilities who are financially struggling and, for various reasons, not getting enough in benefits. I can understand why they think “hey why not me?”. However, most people on those threads have no idea the implications of raising a child with significant disabilities.

I didn't even open that thread, I knew exactly where it would head.

My 14yo has seizures daily, no life outside this house.

I would swap the few hundred quid a month for her future in a heartbeat.

The twats with the pound signs in their eyes have zero understanding of what life is like to get the bloody benefits in the first place.

Sorry if I’ve misunderstood you, I wouldn’t want to upset anyone.

I am saying the issue is where there has been an increase in sen needs over the years and people who already did not understand it are now faced with councils talking about “ too many “ it’s easy to see how many people are thinking that sen is over diagnosed - not that I agree with it.

however there is a whole cohort of disabled children people are forgetting which is the non sen disabled children who are also suffering now because it’s all being put in to one big category.

My now adult son was on DLA and I was fully dependent on benefits as a single mother.

Plenty of people took issue with this, but if I worked instead of being there to look after him the cost of specialist provision would have been many times more the cost in benefits.

People are dicks and are better off ignoring on this subject. It’s like they want us to admit that we really want to have disabled children and a poor quality of life because it means we can claim loads of money and live easy lives. Wankers.

The poster of the other thread should perhaps of consider how tone deaf her post was in money matters, where a lot of people are working their arses off and have to choose between heating and eating.
There is no taking away from the fact that she was getting a hell of a lot of money from the taxpayer, and refused to answer what the actual father of the children was contributing!

Two of the big reasons schools are seeing more children with high needs is because of lower infant mortality- 50 years ago my DD4 would have died very young - and all children are now, thankfully, seen as worthy of an education. Even just 50 years ago I’d have been told/encouraged to put DD2 into a children’s home/hospital and leave her there. She’d never have seen a day of schooling.

100% not your fault.

There’s nothing in that list which parents haven’t done for years and years and yet the rise is relatively recent, probably in the last decade only.

My gut feeling is it’s something environmental - pesticides, new chemicals, something like that - but there seems to be very little impetus to find out and people shut the conversation down quickly.

I was absolutely dumbstruck reading your post op. I literally had no idea what some people go through. Thank you for educating me.

You are right in some instances - my Dc would never have survived birth.

this doesn’t however account for the high diagnosis of sen without illness / physical disabilities. There is a lot of healthy children who wouldn’t have required medical attention being diagnosed with sen.

It doesn't matter what the father is contributing though because it wouldn't be taken into account in regards to her benefit entitlement.

“There she goes”. I thought it was excellent.

It matters because she was already on almost twice the national average salary, without maintenance. And naturally, people were quite annoyed that their children were suffering whilst their taxes support other people’s children.