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

[Montereyjaaack]

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?

Can you consider a residential placement for her? This sounds like absolute hell.

I'm so sorry OP, this sounds unbelievably tough. You deserve so much more support. It always amazes me that if someone like your daughter was in residential care (and I'm absolutely not suggesting this for you as I understand the complexities around this) that they would be assessed for a care package with a team of carers working shifts, yet parents are expected to do this job single handled day in day out with no or very little break or respite. I don't have any suggestions having never been in your situation but wanted to acknowledge how hard it is for you.

I say this as the single parent of a young person with autism.

The Op has already said she doesn't want to consider why is this the first thing people suggest ?
It's not a simple process and it's usually a very lsst resort .

How do you think your post is helpful?

why do you think there is this option? It's just non existent. Parents like us often cannot even get a few hours of respite per week. There just aren't residential places to leave our children.

Also (and this seems to be very difficult to understand to many on here) - these children are loved and parents want to look after them at home and OP has made it clear that she wants that too.

But where do you think this magical residential care exists???? I would really welcome some pointers.

not only a last resort, it's really primarily a non option. Always amazes me that people here think this option even exists. I guess these are posters who have no real live experience of SN and think families like the OP's have options and can access support. People must be living under a rock.

It's infuriating they are so blase about it too ,i mean residential school, s do exist but it's an extremely hard process not only making the decision to place your child in one but to get the LA to agree to fund and it's usually as a very last resort
The idea that you can just pop your child in one and visit every day as one poster suggested is laughable and incredibly ignorant.

I know a few parents who fought for residential setting. I don't know anyone who actually succeeded :(

How do you think yours are? You're always all over these threads, hectoring anybody who dares to post.

Because i have experience i live it every day so yes I'm going call out the ignorant responses

I know you are, because you do it over and over and over and then accuse other posters of not being helpful.

I know one but it took years and her child is in a school in a different country of the UK to her hundreds of miles away .

Becsuse they are not
If I went on threads, on a subject I knew nothing about and offered well.meaning but utterly useless advice i wouldn't be being helpful either.

So sad for you, Op.
How does your daughter survive without eating, if I may ask?
Does she have a tube?
Every minute must be an intense worry for you, Op.

Is there any way where you can resume working more hours in your old job and pay for a carer for those hours. It doesn't give you rest time but the change might be welcome.

You're not being helpful here, but you carry on.

And you think posters wittering on about respite and residential schools, are helpful ?

how are posts from someone with lived experience on the matter not helpful but suggestions for things like nonexistent residential care are?

Many poster posting on these threads just come up with nonsense as they have no idea what the reality is.

How is flooding the OP's threads with variations of "That's a stupid suggestion" over and over again helpful?

I'm just as guilty of repeating myself now, sorry OP. I will leave x2boys and her super-helpful hectoring.

I have a friend whose child lives in residential care but she has Wolf-Hirschhorn Syndrome. So it may be worth, as a pp said, asking for more investigations as to what is the cause of your daughter's physical disabilities, OP, in case it opens doors to more and specific help? Although I realise this just sounds like another chore, probably.

Help goes off need ,my son has a rare chromosome disorder, but much like other disabilities the affects of the disorder are very variable from person to person ,it's helped me to know what caused his disabilities but it won't by itself open any other doors although there maybe online groups if there is a specific disorder, which can help put people in touch.

I just wanted to come on and say that I completely feel what you are saying here. I've got 2 disabled children, I've been crying all morning because the school holidays have been so, so hard and I am just utterly exhausted. Sending you a big hug and lots of solidarity!

A friend of mine moved to the caymans as care was much cheaper .. they had a live in local women who was incredible and were able to have weekends away etc and their child was similar needs to yours. Husband was in IT

Probably a tube. Usually something like a peg tube if a child is unable to eat orally for whatever reason.

My son used to have an NG tube which went through his nose but that's usually more temporary which was the case with my son. There were talks of a more permanent tube but he was able to start eating orally again, he just needs additional nutrients on top due to his bowel not absorbing correctly so he has a central line and nutrition goes directly into his bloodstream.

Oh OP I hear you loud and clear. The lack.of support is shocking in some areas.
Could you apply for a continuing care assessment if you are awake up and down all night and your daughter needs suction ? .It will be a battle but would open the door to free care.
I read something posted by a parent of a child like mine the other day ( PMLD severe medical needs ) . She said ...stop waiting for someone to rescue you. No one is coming .
Man it hit home because it is so true.