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.

Very true I was awarded two nights a month 18 months ago ,in my LEA it's at a kind of short term children's home ,where disabled children who are awarded respitte can go a couple of nights a months for respite it's actually a really nice place , so far he,s had one over night stay a couple of weeks ago it's taken that long for it to come through, we have two more nights booked this month so fingers crossed .

Where is her father OP?

I see so many threads on here where single mums are struggling with disabled children and the fathers have just decided it's too hard and have fucked off. Men like that are disgusting. They should be held to account.

For those wondering between MS and special school - places in special schools are like hens teeth, i was always told to apply and if I got offered a place, take it. After primary 1 (I’m in Scotland) it’s really difficult to get into them, as the classes are full, so it’s better to get them in early, and then move them to mainstream if they dont need the support, than the other way about.

He practically refuses to look after DD (usually excuse re working shifts). Very sporadic and will often cancel or make changes. Puts himself and his career first. I could write an entire post and sadly seems like lots of men are like him (seen thread after thread of men refusing to pull their weight).
can honestly say it’s easier parenting DD solo and that’s saying something considering what I’d written.
If there was a way to force him to commit to 50/50 and I thought she was being properly looked after, I’d do it.

Thank you. How’s her understanding? Can she tell you if she’s hurt/what happened ?
DD has several meltdowns and don’t know the cause of many of them

Tbf it's area specific i realise I'm luckier than a lot of people but in my LEA we have two special needs primary schools and two special needs high schools and several autism hubs in my area children who are thought might need a special school place go to a panel and get a place I'd it's thought to be in their best interests, there is quite a bit a movement at primary school level with children moving from mainstream to special I realise this isn't the case everywhere

Have you tried using a PECS book op? I don't know what level your daughter is at or if she could use one but it may be worth a try. It's a way of communicating using pictures it can help them to tell you what it is they want etc ithey use them in special schools and it can help some children but obviously they need to be of a certain level to be able to use it you can also use it to show them what's happening now and next. For example now we are eating then we are having a bath and bed and so on

Her understanding is really good. Before she could talk she used an app called ‘Grid’ to communicate (started at your daughter’s age) and it was only then that we realised how much she could understand - she just hadn’t been able to express it before.
We still don’t always understand her meltdowns but they are almost always caused by our not understanding what she is trying to say.

I have a friend with a disabled child and she manages to work full time still and it’s so tough for her. She has no support at all and I’m a support over the phone for her. Recently got an EHCP, her child is 6 and non verbal and as she knows no-one apart from colleagues where she lives its so isolating for her. So work is her saviour, she has had to take some time off sick when her daughter started school as they only had her 1hr a day for months. Very very hard for her, thankfully she’s got a good employer, and now she’s finally received DLA. I wouldn’t swap her life for any money, and I’m sure she would get a fair amount of benefit but that won’t help her when she’s a pensioner or when her daughter is over 18 if she’s not working and paying into a pension so makes sense for her to keep working whilst she can. She earns too much for in work benefits so DLA is all she receives

OPs situation is awfully hard, as are many other posters. Your DD is younger, might there be hope for an easier future?

DS (16) has ASD and ADHD. He was never toilet trained until he went to school but he did then become clean after a few months. But aged 3/4 he used to poo smear - it was hideous. He shared with his twin sister and she used to scream for me, so I would go in and find it, and several times I was so exhausted I just cried. DS cuddled me and said sorry - but he just didn't get it - or stop!

I've lost count of the aborted trips, meals left half eaten, parties we had to leave etc......

We went on holiday when he was about 7 and I was amazed how well he coped. But we did the same trip the following year and he had the biggest meltdown at the airport....

But all these things improved over time - primary years were challenging but by secondary he was so much better, and he's now a delightful boy! He struggles academically and socially - but the violence, the meltdowns, the smearing and toileting issues all seem a long time ago.

I know for many parents this won't be the case - but your LO is still very young, please don't give up hope that things may improve.

@Teenagehorrorbag i really hope so, however with the other behavioural problems I have with her that I haven’t mentioned I think she could be severely autistic. But I’m optimistic things might change, I’m glad things changed for yourself with your son, it’s nice to hear that things can change

I know, it can be so difficult. I wish you all the best however things develop...

It's awful to think anyone could begrudge a parent receiving benefits of any and all type for a dc with disabilities. Any parent would give it all up to have a child and parent and siblings too dealing with all that goes thru it. Very sad. These benefits even at top tier don't touch the sides of what these families go thru.

Hi OP

Google Newlife the Charity for Disabled Children and call their nurse helpline, they may be able to help practically with some of what you are describing. At the very least they will provide a sympathetic ear and signposting.

Your situation is virtually exactly the same as a friend of mine - her child smeared poo everywhere , stood naked on the living room window sill etc. She NEVER told the child off, saying ‘he doesn’t understand’ but if he weed on the kitchen floor laughing he obviously knew what he was doing was wrong. In the end he went into care because she was a single mum and couldn’t handle him. His father and grandparents said the child did not behave like that with them. In the end the child’s consultant told my friend that she was to blame for his behaviour because she let him do what he wanted and set no boundaries. Only you can decide if this applies to you. I am so sorry you’re having a really bad time and really sympathise with you.

How on earth do you think this is an helpful post? ,firstly this is your interpretation a situation you were not involved in at all,
And secondly there are many disabled children who regularly strip off ,are either not toilet trained or only partially toilet trained ,smear faeces etc you can putting in as many boundaries as you want but often you can't fully stop the behaviour

I mean you don't really sympathise do you if you have come in with claims of another person who just didn't apply boundaries 🙄

Children do not smear poo and wee in the kitchen and stand naked on the windowsill because of a lack of boundaries. And laughing whilst they do something isn't an indicator of understanding in the way you mean it.

It sounds like the person in your post had an unsympathetic family and an incredibly unprofessional unhelpful consultant with a lot of finger pointing and blaming the mother.

Interesting that the child apparently "didn't act like that with him" but the child still ended up in care not living with his father...

You sound like my mother who tells me I just need to try harder to learn to drive when in fact I'm partially sighted and "trying harder" will never actually make me see better

I'm so sorry you are having a hard time being a good friend and I really sympathise with your friend

"but if he weed on the kitchen floor laughing he obviously knew what he was doing was wrong."

No it doesn't mean that. Anyone with experience of autistic children should know that.

I’m actually shocked that a so called professional would apply such logic.
@taleasoldashoney raised an excellent point (found myself agreeing with so much of what you’ve said here, thank you). Where are these wonderful grandparents/father who seem to be able to apply these boundaries and manage his behaviour? How did the child end up in care despite them being in the picture and supposedly being able to ‘control’ his behaviour. Back to the issue of how much this costs the state, I’m sure the costs spiralled once put into care. Was mother getting enough support as a single parent? Doubt it if she’s got Drs telling her she’s to blame for her child going into care. There’s a lot to unpack and I’m thinking out loud.

with my DD, I genuinely don’t think she can help it. As much as she knows she shouldn’t be doing it (won’t do it in front of me), the temptation is too much. Think it’s a sensory thing where she likes the feel of it. Other children can’t stand the feeling of some/all clothing.
I hope you were able to support her at such a difficult time.

Thank you, never heard of this charity. Will look into them ❤️

All the time 🤣

I understand op. I am mother to an autistic 6yo DS. I haven’t and won’t read the benefit thread as it’ll be angering. The money doesn’t even come in to how hard life can be. I get DLA for ds and it helps with things like special food items for his limited diet and personal care items but would give it up at any point to have my boy verbal and literate and to not feel ill at the thought of the future when I’m no longer here.
Theres a lot of ignorance regarding special needs and disability but people should just know not to comment on something they know nothing about; and this judgemental keyboard bashing just proves that. Rise above it. Sending love to you, I see you.

Lol.

This whole story all sounds completely plausible…

"This whole story all sounds completely plausible…"

A complete pile of poo.

Have you had a carers assessment for you to get respite from social services yet? That could provide you with overnight respite to recuperate. Also your child is entitled to a carers assessment of their own needs by social services and that should provide carers (could be 2 to 1) to take them out to social settings eg cinema, swimming, to the park and that would help their sensory needs. You need a sen specialist OT (level 2 is best) to provide your child with a sensory diet (not food) of activities to meet their sensory needs throughout the day so they can get their sensory needs met without resorting to negative sensory seeking behaviour. You will most likely have to fight the LA to get the EHCP to specify and quantify SALT and OT provision and fight for social services to do a care assessment if your child and carers assessment of yourself. In the meantime you can purchase sensory seeking activities from various providers such as Rompa, Amazon. Play dough, thermaputty, water play, bubbles, making dough are different ways your child could meet sensory needs to cut the smearing. Every single child is different but you will find your own way and you can do it if you stay strong and don’t be intimidated by the LA and SS when applying for education and social care support. IPSEA can help you with getting or appealing your child’s EHCP to get it more specified. Good luck.