To be so fed up - today - of being a parent to a disabled child

Montereyjaaack · 2025-08-21T18:46:20+00:00

I’ve NC for this. Sorry this is very long. i adore my DD. She’s so brilliant in every way she can be. But I’m so utterly fed up of lack of sleep, lack of support and lack of money. Im also so sick and tired of the shit I see from people online whinging about disabled people and benefits and “free” cars etc. I want nothing more than for my daughter to be safe and happy. I’m sick of worrying about her future. I’m sick of services stopping or not being available in the first place. I’m sick of not being able to have a proper income or a satisfying job. Im terrified of what will come if her when I die. I’m already 50 and she’s not yet 10. She’s non-verbal, can’t use ANY communication systems (PECs, signing or technology). She can’t walk. She can’t stand. She can’t eat. Shes probably autistic but is just in a waiting list and the assessment probably won’t mean much because they admit they don’t know how to assess her. She has no respite. So-called carers provided by the council for 6 hours a week are beyond useless and more of a burden to me than she is. Everything is a struggle - everything. She doesn’t sleep more than 5 hours and makes so much noise when she wakes. There are safety issues around her inability to swallow safely so someone had to keep an eye of actually intervene to suction her during the night to add to the joy. I’ve had to wash her bedclothes every day (plus clothes etc) this past week because she had iron medication (as she’s anaemic) and flooded her pads with diahorrea that burst into her bed, her duvet etc. No family help (I have a husband but less said about that the better) as family are older/in different countries. The hospice she received support and respite overnight a couple of times a year has discharged her as she’s apparently lucky she isn’t likely to die before18. So Jo overnight care ever unless something magical happens to the UK economy. There are no actual respite services in this county. I couldn’t afford private respite even if it did exist as I work 10 hours a week in term time and only started that before Christmas last year so haven’t been able to save. And then have carer’s allowance and child benefit. She loves being out and about- so I have to have a WAV from Motability- so all the mobility component of DLA goes on that . Then petrol - already £200 over summer holidays. We are limited as to where we can go because she’s doubly incontinent so very very limited time out and where there are changing facilities to hoist her. I am generally a cheerful person but now in perimenopause so I’m just reaching my fucking breaking point with a period that is so heavy I feel faint all the time but still have to go and go and go because she’s so limited - she can’t play with toys or use a tablet because of how her physical limitations affect her. I am so sick of trying to stay afloat. I used to have a fairly well paid job. I used to have time to myself. But this is it until we are both in wheelchairs or care or something equally shit. It probably isn’t an AIBU but am I unreasonable for feeling this is it? It doesn’t get better does it?

Anewuser · 30/08/2025 13:12

@Seawolves that's really useful, thank you.

Seawolves · 29/08/2025 11:10

@Anewuser A VW Crafter and the conversion was done by Brook Miller, the seat under the hoist pulls down into a bench.

To be so fed up - today - of being a parent to a disabled child

Anewuser · 29/08/2025 10:31

@Montereyjaaack please don’t take this the wrong way because I know you say she’s had genetic testing but was it Whole Genome 100,000 sequencing? It took us years to finally get a genetic diagnosis, and whilst it doesn’t change anything, at least we have an answer.

@Seawolves that WAV sounds amazing and exactly what we’ve always needed. We bought a mobile hoist so we could hoist him onto the floor of the wav but then he got too big for that. Our motability contract is up in November so we’re looking now. Please would you mind telling me what you have? TIA.

Original poster

Montereyjaaack · 28/08/2025 06:30

She had a Toni box when she was younger - it stopped working very quickly for some reason (I mean it broke) and we didn’t replace it because she was never keen. Part of her problems are her repetitive interests.
She stopped watching new cartoons or films when she was 5 and won’t watch anything new - she’s actually slept a bit better tonight but woke me up crying because something she didn’t know came on her Kindle Fire (she swiped it and sometimes it puts different shows on.
@Seawolves - I had no idea WAVs like that even existed! We’ve been trying to find a powered wheelchair that lies flat. Actually tested one yesterday but she’s still too small to use it so back to the drawing board on that

OP posts:

Holmints · 27/08/2025 21:02

Seawolves · 27/08/2025 20:06

Our Tonie box is a lifesaver sometimes, some of the Enid Blyton ones play for hours!

Show quote history

There’s a Tonie 2 about to be released with more night time features too. Wish I’d invented them!

Seawolves · 27/08/2025 20:56

@Montereyjaaack We are fortunate that he when he qualified for mobility on DLA we were awarded a wheelchair vehicle with a hoist and a seat that converts to a changing bed in the back, it took almost 18 months to arrive (to the point where his DLA was due for renewal before we took delivery) but now we have it it has been an absolute godsend.

I hear you on the overnight care. It's the broken nights I find the hardest, between pain, needing suctioning, seizures, vomiting, his bloody feed pump malfunctioning, needing to turn him, giving his meds at midnight and his random "let's party" awakenings I am running on empty some days.

Seawolves · 27/08/2025 20:06

Holmints · 27/08/2025 19:43

Does she have a Tonie box? I’m wondering if she’d be content to have the Tonie box read her a story at 2am so you could try and nap. The sleep deprivation is what ruins you. It’s hard.

Show quote history

Our Tonie box is a lifesaver sometimes, some of the Enid Blyton ones play for hours!

Holmints · 27/08/2025 19:43

Montereyjaaack · 26/08/2025 09:07

@x2boys - usually I breeze through things but the lack of sleep nearly kills me. It’s much worse than a newborn baby because they usually eventually sleep, or nap or at least other people can hold them for 5 minutes while you scream into a pillow or whatever..
DD was up at 2 again last night. I was so tired I couldn’t get up to do anything until after 3 .
I try everything- taking her for long walks (during the day of course) and then doing “jobs” (shopping or visiting a garden centre M) and a “big” activity- zoo, farm type thing , art gallery whatever and she’s still amped up.
School wears her out though I expect that’s more that she’s bored to tiredness (she spends most of the day trying to escape the classroom),
I do baths every night or hour long story sessions (she pays total attention to stories and tries to read along) but in summer holidays it’s no more than 5 hours sleep no matter what I try.
I try boring days - just walks snd stories etc still no good.
Swimming can help short term (she tries to swim so it exhausts her) but best I’ll get then is 6 hours (8-2).
I try a regular bedtime (8) but even with Melatonin it’s nearly 10 before she’s asleep.

Whats missing in care is overnight respite. Even one full night of sleep a month makes a huge difference.

Does she have a Tonie box? I’m wondering if she’d be content to have the Tonie box read her a story at 2am so you could try and nap. The sleep deprivation is what ruins you. It’s hard.

Original poster

Montereyjaaack · 27/08/2025 13:50

@Seawolves - a recurring problem! I wish that funding even for some things - like adaptive wheelchair swings was occasionally thought of. My DD loves bubbble tubes and sensory rooms for about half an hour but the only one near us to hire is £20 to hire for an hour.
Additionally few places have easy walks or places to change a child that can’t stand - bigger cubicles don’t help if I have to lie her down to change her etc.
I never see a way out of these issues when the country is in the state it’s in.
Respite is badly needed - just look at pp’s post above as well as mine. Beyond hoping medication works there’s nothing to help in the majority of cases.

OP posts:

Motherfluffers · 27/08/2025 11:07

I’ll just leave these links here as these are worthy initiatives if anyone has the spoons to support, or needs the link to try to find a (sadly very rare nationally) accessible playground:

https://www.scope.org.uk/campaigns/lets-play-fair

SCOPE: Let's Play Fair
Inaccessible playgrounds are stopping too many disabled or SEND children from having fun and friendship. All because playgrounds are not designed with their needs in mind.
From our Playground Accessibility Report we found
-Only 1 in 10 playgrounds are inclusive to disabled children.
-Nearly three quarters of playgrounds are places where it would be difficult for disabled and non-disabled children to play together.

We are calling for local authorities to work with families to create inclusive playgrounds. So that every disabled child can play.

https://paralympics.org.uk/articles/campaigns (Campaign for equal access for disabled kids to PE at school, which is another big issue)

Let's Play Fair | Disability charity Scope UK

Campaigning for inclusive and accessible playgrounds

https://www.scope.org.uk/campaigns/lets-play-fair

Illjusthavethebreadsticks · 27/08/2025 10:05

You sound amazing, I have an autistic DD and thought she was hard work until I read your post.

Seawolves · 27/08/2025 08:24

My 5 year old is unable to hold or play with toys, he's also registered blind and is non verbal. He's unable to sit without support, he has hypertonia in his limbs and hypotonia in his trunk, he has very little head control. He is medically complex too but he lights up my life, he is developing a wicked sense of humour but the holidays are very long when there is next to no provision for our children even a walk to the park is limited because there is nothing there he can play on.

Original poster

Montereyjaaack · 27/08/2025 08:16

@x2boys
Yes she’s had full WES testing. Nothing.
And you are right - a SWAN child. It’s so rare to see someone else recognise that term!
And she’s had MRIs of her brain and legs (we know she has very little leg muscle (if any) because she didn’t move in utero). And CT scans of her head.
She has generalised weakness but does get stronger over time from the hips up.
She can’t hold objects though - no pincer grip. It’s impossible to know if she will ever develop one.
That leads to her not being able to play with toys very easily so once she got to around 2 years old she stopped being interested in toys.
It makes summer holidays very difficult!!

OP posts:

WickWood · 26/08/2025 20:03

You sound amazing, as does your little girl. I have no advice, only empathy, you are the least unreasonable person I've ever heard x

TigerRag · 26/08/2025 19:48

Montereyjaaack · 26/08/2025 19:25

@Avantiagain no she hasn’t. I should say she’s only just turned 8.
Her medical needs are, to me, minimal but requires constant supervision.
School is trained in her needs.
Sometimes I wonder if she doesn’t get “much” from SS is because she doesn’t have a diagnosis.. of anything.
Her being non-verbal with apparent developmental (intellectual) delays doesn’t match at all with her (ad hoc) “diagnosis” / descriptive physical disabilities.
she doesn’t have cerebral palsy - which is what she appears to be a bit like.
Shes been tested for Spinal Muscular Atrophy type 2, peripheral neuropathies, other degenerative disorders, muscular dystrophies, myopathies… you name it. Currently the major hospital dealing with her (occasionally) is looking at skeletal dysplasias.. but she doesn’t seem to fit that either.
Theres a tentative hint at ASD because she’s so repetitive in interests (but also not when it comes to going places that are new of meeting people- very sociable etc).
Most people ever recorded with her apparent physical condition are highly intelligent, independent (drive themselves, go to uni, run businesses etc), so she’s a “moving target” as the NHS describes her.
They can’t give a realistic prognosis because she continues to do new and surprising things .
But.. when it comes down to it, she can’t stand, can’t eat, can’t walk can’t talk etc..

Has she had a genetics test done? Also a SWAN. All tests are clear and I think my consultant has pretty much run out of ideas of what it could be

x2boys · 26/08/2025 19:34

Montereyjaaack · 26/08/2025 19:25

@Avantiagain no she hasn’t. I should say she’s only just turned 8.
Her medical needs are, to me, minimal but requires constant supervision.
School is trained in her needs.
Sometimes I wonder if she doesn’t get “much” from SS is because she doesn’t have a diagnosis.. of anything.
Her being non-verbal with apparent developmental (intellectual) delays doesn’t match at all with her (ad hoc) “diagnosis” / descriptive physical disabilities.
she doesn’t have cerebral palsy - which is what she appears to be a bit like.
Shes been tested for Spinal Muscular Atrophy type 2, peripheral neuropathies, other degenerative disorders, muscular dystrophies, myopathies… you name it. Currently the major hospital dealing with her (occasionally) is looking at skeletal dysplasias.. but she doesn’t seem to fit that either.
Theres a tentative hint at ASD because she’s so repetitive in interests (but also not when it comes to going places that are new of meeting people- very sociable etc).
Most people ever recorded with her apparent physical condition are highly intelligent, independent (drive themselves, go to uni, run businesses etc), so she’s a “moving target” as the NHS describes her.
They can’t give a realistic prognosis because she continues to do new and surprising things .
But.. when it comes down to it, she can’t stand, can’t eat, can’t walk can’t talk etc..

Ah, she's a SWAN
You might have already done this but if her school are trained in her needs
Have you approached any of the staff regarding PA hours ?
I know sometimes staff at my sons special school do extra hour ,s as PA,s
Respite shouldn't be awarded on diagnosis as people can vary so much ,it should go off need

Original poster

Montereyjaaack · 26/08/2025 19:25

@Avantiagain no she hasn’t. I should say she’s only just turned 8.
Her medical needs are, to me, minimal but requires constant supervision.
School is trained in her needs.
Sometimes I wonder if she doesn’t get “much” from SS is because she doesn’t have a diagnosis.. of anything.
Her being non-verbal with apparent developmental (intellectual) delays doesn’t match at all with her (ad hoc) “diagnosis” / descriptive physical disabilities.
she doesn’t have cerebral palsy - which is what she appears to be a bit like.
Shes been tested for Spinal Muscular Atrophy type 2, peripheral neuropathies, other degenerative disorders, muscular dystrophies, myopathies… you name it. Currently the major hospital dealing with her (occasionally) is looking at skeletal dysplasias.. but she doesn’t seem to fit that either.
Theres a tentative hint at ASD because she’s so repetitive in interests (but also not when it comes to going places that are new of meeting people- very sociable etc).
Most people ever recorded with her apparent physical condition are highly intelligent, independent (drive themselves, go to uni, run businesses etc), so she’s a “moving target” as the NHS describes her.
They can’t give a realistic prognosis because she continues to do new and surprising things .
But.. when it comes down to it, she can’t stand, can’t eat, can’t walk can’t talk etc..

OP posts:

Avantiagain · 26/08/2025 10:49

Has she ever been assessed for children's continuing health care funding?

My son (learning disability, autism and challenging behaviour) got most of his funding for support through that. It also funded more specialist carers.

cestlavielife · 26/08/2025 10:30

It will be Children with Disabilities Team. She is a child with disabilities.

That social worker is the one to call and say again what you need and want.

Some have a,transition ss team covering 14 to 25 to tie in with ehcp. Crossing from child to adult services.
Thereafter adult ss for adults with learning disabilities

At age 18 the law changes as adult and they under care act 2014.
More rights to care as adult post 18 (as a parent you are not any longer legally responsible) and the places,and agencies to access support change.

Vinvertebrate · 26/08/2025 09:15

Destiny123 · 21/08/2025 20:35

Sorry to hear

Approach your council for short breaks respite, you'll be entitled to 1 weekend a month, I'm about to become a respite foster carer

www.gov.uk/apply-short-term-care-for-child

Ask for a different format or iron, some cause diarrhoea/constipation/nothing

Xx

Show quote history

I know your post is well-meaning, so no criticism intended, but as a SEN/autism parent I have been asking - and eligible - for respite care for DS since 2018 and have received precisely none. Not all LA’s are willing or able to do it, whatever BS they spout in policies or on their website. If only!

x2boys · 26/08/2025 09:13

Montereyjaaack · 26/08/2025 09:07

@x2boys - usually I breeze through things but the lack of sleep nearly kills me. It’s much worse than a newborn baby because they usually eventually sleep, or nap or at least other people can hold them for 5 minutes while you scream into a pillow or whatever..
DD was up at 2 again last night. I was so tired I couldn’t get up to do anything until after 3 .
I try everything- taking her for long walks (during the day of course) and then doing “jobs” (shopping or visiting a garden centre M) and a “big” activity- zoo, farm type thing , art gallery whatever and she’s still amped up.
School wears her out though I expect that’s more that she’s bored to tiredness (she spends most of the day trying to escape the classroom),
I do baths every night or hour long story sessions (she pays total attention to stories and tries to read along) but in summer holidays it’s no more than 5 hours sleep no matter what I try.
I try boring days - just walks snd stories etc still no good.
Swimming can help short term (she tries to swim so it exhausts her) but best I’ll get then is 6 hours (8-2).
I try a regular bedtime (8) but even with Melatonin it’s nearly 10 before she’s asleep.

Whats missing in care is overnight respite. Even one full night of sleep a month makes a huge difference.

It does I get two a month and I'm very grateful for that ,when is she back in school?

Original poster

Montereyjaaack · 26/08/2025 09:07

@x2boys - usually I breeze through things but the lack of sleep nearly kills me. It’s much worse than a newborn baby because they usually eventually sleep, or nap or at least other people can hold them for 5 minutes while you scream into a pillow or whatever..
DD was up at 2 again last night. I was so tired I couldn’t get up to do anything until after 3 .
I try everything- taking her for long walks (during the day of course) and then doing “jobs” (shopping or visiting a garden centre M) and a “big” activity- zoo, farm type thing , art gallery whatever and she’s still amped up.
School wears her out though I expect that’s more that she’s bored to tiredness (she spends most of the day trying to escape the classroom),
I do baths every night or hour long story sessions (she pays total attention to stories and tries to read along) but in summer holidays it’s no more than 5 hours sleep no matter what I try.
I try boring days - just walks snd stories etc still no good.
Swimming can help short term (she tries to swim so it exhausts her) but best I’ll get then is 6 hours (8-2).
I try a regular bedtime (8) but even with Melatonin it’s nearly 10 before she’s asleep.

Whats missing in care is overnight respite. Even one full night of sleep a month makes a huge difference.

OP posts:

x2boys · 26/08/2025 08:09

Montereyjaaack · 25/08/2025 20:21

I’m popping back again (with a blinding headache from being up from 2am - yes DD not sleeping. She’s healthy atm just doesn’t sleep).
to answer a few helpful suggestions first - I first sought SS involvement when I was very vulnerable- in 2022. They didn’t do the requested carers assessment and instead put DD under the Children with Disabilities Team. I let it slide because it was supposed to help her. We do regular CIN reviews (just adds to my pile of meetings that get us nowhere).
Despite a wonderful social worker (now replaced) actually NOTHING happened until just before summer this year. We were allocated PA’s (for the 6 hours).
Perfectly lovely people- they just barely understand English (which means I have to say everything 6 times) so they don’t understand complexities or nuances in my DD versus another child and worst of all they aren’t medically trained in the only thing they need to be trained in.
So currently they come around and I drive them around to various activities for 3 hours and the most they can do is - with me there at every minute- change DD’s pad or wheel her wheelchair.
I have gone back to SS to insist I get a Carer’s Assessment.
But.. even if I had direct payments I still wouldn’t easily find someone to do the role (the 6 hours). I tried to do that before accepting agency staff and was advised by SS that would take forever so went with agency.
Re the vulnerability side - I have really struggled a few years ago. Not with Dd as such but with a traumatic (I don’t use that term easily) experience I had with a particular person.
I had previously (at the time) posted on MN but got sadly unhelpful comments (not all but I couldn’t handle the nasty ones) so I won’t mention it on here in detail. I did get some satisfaction from going through court - but that took 5 years of my life and left me a shell of who I was before it happened. THAT is why I won’t tolerate god-talk. Because whatever one can say about babies dying (like mine) or disabled children (like mine) or having a shit husband (like mine) you cannot justify the behaviour of that one person that put me in that position.
So I get the well wishes from god believers , I see the ableism, I really embrace the heartfelt kindness and empathy from the rest of you but I won’t be “hearing” god talk if I can choose it. Sad as that might be for some.

Thst sounds really hard as I said my child has complex disabilities but without the health issues and we s
do ( now ) get respite I'm.not going to offer you any platitudes or make up nonsense about residential schools etc I know respite is very variable across the UK and it must be even harder to access when a child has such significant health issues that require specific care I ts just awful that you are just expected to get on with it..

Original poster

Montereyjaaack · 25/08/2025 20:21

I’m popping back again (with a blinding headache from being up from 2am - yes DD not sleeping. She’s healthy atm just doesn’t sleep).
to answer a few helpful suggestions first - I first sought SS involvement when I was very vulnerable- in 2022. They didn’t do the requested carers assessment and instead put DD under the Children with Disabilities Team. I let it slide because it was supposed to help her. We do regular CIN reviews (just adds to my pile of meetings that get us nowhere).
Despite a wonderful social worker (now replaced) actually NOTHING happened until just before summer this year. We were allocated PA’s (for the 6 hours).
Perfectly lovely people- they just barely understand English (which means I have to say everything 6 times) so they don’t understand complexities or nuances in my DD versus another child and worst of all they aren’t medically trained in the only thing they need to be trained in.
So currently they come around and I drive them around to various activities for 3 hours and the most they can do is - with me there at every minute- change DD’s pad or wheel her wheelchair.
I have gone back to SS to insist I get a Carer’s Assessment.
But.. even if I had direct payments I still wouldn’t easily find someone to do the role (the 6 hours). I tried to do that before accepting agency staff and was advised by SS that would take forever so went with agency.
Re the vulnerability side - I have really struggled a few years ago. Not with Dd as such but with a traumatic (I don’t use that term easily) experience I had with a particular person.
I had previously (at the time) posted on MN but got sadly unhelpful comments (not all but I couldn’t handle the nasty ones) so I won’t mention it on here in detail. I did get some satisfaction from going through court - but that took 5 years of my life and left me a shell of who I was before it happened. THAT is why I won’t tolerate god-talk. Because whatever one can say about babies dying (like mine) or disabled children (like mine) or having a shit husband (like mine) you cannot justify the behaviour of that one person that put me in that position.
So I get the well wishes from god believers , I see the ableism, I really embrace the heartfelt kindness and empathy from the rest of you but I won’t be “hearing” god talk if I can choose it. Sad as that might be for some.

OP posts:

WellThisIsFranklyDreadful · 23/08/2025 18:40

There is something very wrong with people who think they can force their religion on others then throw temper tantrums when told what to do with it. If there is a god then they have chosen to inflict profound disability on my child. I’m not interested in any sanctimonious platitudes.