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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To tell you what life is like with a disabled child?

304 replies

FlyingTigger · 02/05/2024 17:32

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.

Do you feel bad for receiving a ‘high amount’ of UC? | Mumsnet

Last week I went to my local Children’s Centre and attended a Citizen’s Advice group that runs once a week. As long as you’re registered to the Ch...

https://www.mumsnet.com/talk/money-matters/5066331-do-you-feel-bad-for-receiving-a-high-amount-of-uc

OP posts:
ExpatAl · 03/05/2024 18:43

We’ve just had some time in Disneyland with a family who have a non verbal autistic young teenager and a younger daughter same age as mine with some challenges. They are amazing parents. Amazing. It’s hard work and endless.

Spendonsend · 03/05/2024 18:43

PorridgeEater · 03/05/2024 18:11

Surely you should be contacting your local social services for support e.g. maybe they could arrange respite care.

There is a real shortage of respite care available. It might vary area to area, but here you might be awarded one night a month, but if there are no foster carers available it doesn't happen. There are other things like day clubs which you might get two days over the summer holidays. You might get funding for a PA but not actually be able to recruit one.

I mean every little helps but there really isnt much respite out there..

GlueNoGlue · 03/05/2024 18:47

@ExpatAl I’m desperate to take my kids to Disneyland but worried about how my son will manage. Did your friends use the Disney access pass? Was it good? Thanks!

Iamasentientoctopus · 03/05/2024 18:50

Ponche · 03/05/2024 14:39

Sorry to divert the thread, but it looks like there are a lot of knowledgeable posters on here whose DC have a similar profile to my DD.

Just wanted to ask how you knew if mainstream school/special school was best for your child? DD is 3.5, non-verbal and awaiting an ASD assessment. The LA are pushing for mainstream but I don’t feel it will be right for her.

Also don’t know if she is high needs/complex enough for the special schools in our LA. We only have a few ARPs. We’re in the early stage of the EHCP process, the LA are carrying out the needs assessment.

Special school has been an absolute game changer for us. My daughter is in y1 and is now fully verbal after being in special school since September. Prior to that she would repeat the same phrases again and again and made very little sense. She’s in a class of 8 with 4 members of staff. I don’t want my NT son to go to mainstream now as I’ve had my eyes open to how school should be.

Original poster
FlyingTigger · 03/05/2024 18:50

@bryceQ @x2boys
have you ever hidden anything and thy en not remembered where?! Or hidden something (usually edible) to only find it weeks later all mouldy or is that just me 😭

OP posts:
Original poster
FlyingTigger · 03/05/2024 18:51

GlueNoGlue · 03/05/2024 18:47

@ExpatAl I’m desperate to take my kids to Disneyland but worried about how my son will manage. Did your friends use the Disney access pass? Was it good? Thanks!

Could you build up to it? Perhaps start with a smaller theme park during term time when quieter? I think my DD would be completely overwhelmed but hopefully one day.

OP posts:
NoisySnail · 03/05/2024 18:52

We looked into doing foster caring. But it was a lot of work and when we looked into it you only received reimbursement for receipted costs. But by the time extra heat, wear and tear on our clothes and furniture was taken into account, it would have cost us money to do respite caring.

Original poster
FlyingTigger · 03/05/2024 18:56

Ratfinkstinkypink · 02/05/2024 20:01

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.

Thank you for sharing. I can’t imagine how difficult that can be too as it sounds quite specialised (care required)? It sounds physically exhausting too. I hope you get support ❤️

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:01

Snackarooney · 02/05/2024 20:56

I hear you! It's hard and it's lonely.

I'm not a single mum as such but my dh works away most weeks so I definitely solo parent.

I can't work rn there is constant need for me from my nd kids or appointments I'm currently appealing school places and it's just a nightmare.

We're a 1 income household my dh earns literally 1000 pa over qualifying for any help from uc. 1 child does get he dla others application still processing and carers allowance but I'd never begrudge anyone taking help ever people are weird and those who see a disability and think money clearly have no idea how much money things for our kids cost like nappies at 5/6 and special clothing to avoid smearing and have no labels buttons or seams ect the amount of electrical get broken but you have to replace cos your child can not be without.

I hope you're OK and still have some support around you, like I said not single but definitely solo even on a weekend cos we need routine and some normality, mum does things so always have to do things.

You're doing amazing and your little one is clearly loved and cared for. Itw hard bit please make sure that ehcp is exactly what it needs to be not just OK. Please
I hope you've got some support xxx

Honestly, the admin itself can be a part time job which someone else already pointed out. Not to mention being on standby if needed. Thankfully her school is great and rarely call but I know this is something that lots of parents struggle with. Her nursery used to do this all the time, call whenever DD would have a meltdown.
solo parent can be just as difficult Im sure ❤️

OP posts:
laminaHK · 03/05/2024 19:01

I’m sorry you felt like you had to write this post in response to such narrow minded people on here.

Please don’t feel like you have to justify the benefits you are given to help care for your children. Of course you would much rather work for that money & your children not have the additional needs that they do.

I can understand people being pissed off at somebody who cheats the benefits system, could work & chooses not to, etc.
But receiving support for disabled children - don’t understand how anybody could possibly have a negative view or judgement on it….. arse holes 😂

take care OP 💐

Original poster
FlyingTigger · 03/05/2024 19:03

buttnut · 02/05/2024 21:03

@SEmyarse DLA is awarded based on care needs and how much additional care a child needs compared to a ‘typical’ child the same age. The process of filling in the forms and providing evidence is pretty long and exhausting. There are different ‘rates’ of allowance awarded. If your daughter only had a slightly higher level of needs (and no overnight care needed etc) then she would either not be accepted or only be awarded the very lowest rate of care which isn’t a lot of money.

Yes, the dreaded DLA form. I was exhausted after filling that out as need to breakdown exactly how your child is disabled. I get why there’s the need (they’re not mind readers) but it’s soul destroying having to spell out all her limitations and difficulties.

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:06

Spendonsend · 02/05/2024 21:27

I think people are so whipped up by the media they think disabled children are recieving about half the amount of money the government has available to it in benefits.

DLA is a tiny bit of welfare spending. PIP, DLA and AA combined are less that 4% of government spending. (About 12% of welfare spending)

Pensions are 48% of welfare spending for context.

So i take the idea that they are bringing the country to bankruptcy with a pinch of salt.

As for SEN - sen incident rates are 17% of pupils now compared to 19% in 2007 (peak of 21% in 2010) so they might be more in numbers as the total school population grew, but the level is actually fairly consistent.

Theres about 500,000 children with an ehcp. This has increased somewhat, but this is in part due to increasing the age to 25.

Sorry for all the facts! But i am fed up with disabled children being scapegoated.

Thank you for the stats. Really puts things into perspective

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:07

taleasoldashoney · 02/05/2024 21:21

It would cost this much a year on average: £156,847,600,000

If all carers for disabled children got £65,000 a year, and they don't then it would cost
£40,300,000,000

This would increase public spending by
£116,547,600,000 per year

And that's assuming each family only has one disabled child

Show quote history

Mind blowing numbers

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:09

softslicedwhite · 02/05/2024 21:31

People look at me in disbelief when I tell them that my nearly 10yo puts pretty much anything in their mouth, and that I'm constantly removing Lego bricks, tv remotes, drumsticks etc from their mouth. I have to watch them every single minute of every day.

Imagine that level of vigilance. Forever.

Yup. DD doesn’t look like she has any disabilities so when she’s having a meltdown people may assume she’s being naughty. If she snatches a toy off another child they might wonder why she doesn’t have any manners. If she doesn’t respond to a hello they’ll think she’s rude.

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:13

EilonwyWithRedGoldHair · 02/05/2024 22:16

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.

But then you’re running on empty which doesn’t help anyone. What happens if you start to fall asleep at the wheel or make a serious mistake at work/home. I hope you do apply, even if it’s a temporary solution whilst things settle down

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:16

Albatrosssss · 03/05/2024 07:16

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.

Edited
Show quote history

Thank you for sharing. I remember a thread recently where a boy locked himself in his room as he was so upset about his friend not being online. He was struggling with making friends iirc and mum could hear him crying through the door.

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:22

Ponche · 03/05/2024 14:39

Sorry to divert the thread, but it looks like there are a lot of knowledgeable posters on here whose DC have a similar profile to my DD.

Just wanted to ask how you knew if mainstream school/special school was best for your child? DD is 3.5, non-verbal and awaiting an ASD assessment. The LA are pushing for mainstream but I don’t feel it will be right for her.

Also don’t know if she is high needs/complex enough for the special schools in our LA. We only have a few ARPs. We’re in the early stage of the EHCP process, the LA are carrying out the needs assessment.

I second looking around and visiting as many as you can. Even if they’re too far away, you might still pick up some bits of knowledge or ‘intel’ haha

a couple of schools really tried to put me off and another just wouldn’t return my calls.
Current MS school has an amazing head and SENCO. TAs are hit and miss. I’m generally happy where she is but that could well change if there’s a change in SLT.
Speak to other parents too if you know any where their children attend the schools. If there are any local WhatsApp/Facebook groups might be worth joining and finding out through them.

good luck. I remember when I used to lose sleep over choosing a school.
If it helps, I deferred mine so I could get the extra time to get an EHCP together and find a school

OP posts:
PorridgeEater · 03/05/2024 19:26

Spendonsend · 03/05/2024 18:43

There is a real shortage of respite care available. It might vary area to area, but here you might be awarded one night a month, but if there are no foster carers available it doesn't happen. There are other things like day clubs which you might get two days over the summer holidays. You might get funding for a PA but not actually be able to recruit one.

I mean every little helps but there really isnt much respite out there..

Show quote history

I know! It's a lottery but on balance probably worth a try - even a little help would be something.

CoolMoose · 03/05/2024 19:28

I just wanted to say…you are not alone!!

It is honestly so tough and I know exactly what you mean OP. I have a little boy (aged 6) who is also non-verbal with a learning disability (cognitive age below 1). I can’t go out on family days out with him and everything is a struggle and people just don’t understand the cumulative impact and how isolating life can be as a carer. I work full time (flexibly) too because we can’t afford life otherwise, but it is incredibly stressful. We’ve found holiday care for him but it’s £200 a day.

I’m sick of society being judgmental about child disability. People think if you claim disability payments then that covers, but the extra costs are huge!!! Psychological costs, costs to other children in the family, on parents mental health and then the actual cost of childcare and extra clothes/equipment/resources needed. Parents of disabled children are worse off in so many ways.

I worry about the future too. I worry about my little boy and how he will develop basic independence skills or whether he won’t develop. It’s heartbreaking to think about. I also struggle OP, with watching other children his age and I grieve for all the things I wish he didn’t struggle with. I have times when this feeling is overwhelming.

The world does need to know about how hard it is, especially when the conservative government has an agenda of targeting the disabled…that makes me feel even more ashamed and like a burden to society.

I also wanted to say OP, moving my little boy to special school has made a huge difference. I’d recommend you think about that :)

Original poster
FlyingTigger · 03/05/2024 19:30

@PorridgeEater @Judecb honestly, I haven’t got the energy to fight for anything extra. (and everything really is a fight). I’m also aware that there’s a shortage of carers so imagine all that time and energy and they’ll probably not be able to find anyone!
I’m going to see how she fares in MS and might have to conserve energy if I need to put her in a special school.

OP posts:
Original poster
FlyingTigger · 03/05/2024 19:33

Thank you @CoolMoose
a few people are praising SS and I think I’ll have to have a serious think. Her current one works quite closely with the SS in the area but I need to chase up exactly how it works.

OP posts:
EilonwyWithRedGoldHair · 03/05/2024 19:43

FlyingTigger · 03/05/2024 19:13

But then you’re running on empty which doesn’t help anyone. What happens if you start to fall asleep at the wheel or make a serious mistake at work/home. I hope you do apply, even if it’s a temporary solution whilst things settle down

Show quote history

We'd have lost most of any UC we were entitled to due to our savings (had a PPI pay out), but the amount has been whittled down by day to day spending - and we need a new roof so once that's sorted we'll apply.

ExpatAl · 03/05/2024 20:35

GlueNoGlue · 03/05/2024 18:47

@ExpatAl I’m desperate to take my kids to Disneyland but worried about how my son will manage. Did your friends use the Disney access pass? Was it good? Thanks!

Yes they had a pass cos teen obv not good in long queues. And she wanted to go on her fave rides multiple times🤣 and all in a certain order. I’d say pass is a must! She could take 3 with her so my daughter would tag along. The rest of us would queue and get one ride in. The gate staff were excellent. All staff everywhere great. And at princess lunch the princesses were great at making it special at every level. For your son maybe princesses not interesting (weren’t for teen) but the other character meals could be good. Me and hubby were not excited about DL but was a bday gift for daughter and we ended up having fab time and planning to go back.

Ticktockk · 03/05/2024 20:58

I didn’t want to read and run as I wanted to say that things can change quickly. Everything you wrote was my daughter at 5/6. She’s now 10, speaking lots (though hard to understand), 99% fine on the toilet, much more independent. Still impulsive and needs watching, but I can sit with her until she falls asleep then she’s happy to stay alone until morning. It does get easier.

saturnspinkhoop · 03/05/2024 21:04

Ticktockk · 03/05/2024 20:58

I didn’t want to read and run as I wanted to say that things can change quickly. Everything you wrote was my daughter at 5/6. She’s now 10, speaking lots (though hard to understand), 99% fine on the toilet, much more independent. Still impulsive and needs watching, but I can sit with her until she falls asleep then she’s happy to stay alone until morning. It does get easier.

i know this wasn’t directed at me, but thank you.