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?

It varies from. Area to area and it's not always 24 nights a year i get 12
It will depend on the LA and what is available and weher there are suitable carers that csn meet the Ops daughter, s needs.

I’m so sorry you’ve been so badly let down by everyone 😞 that is just all so unfair on both you and your lovely daughter 💔

Well.many of us have to whats the alternative?

Where do you live? I am Oxfordshire

But the pp is correct most people including the Op don't want to put their child in residential care even if it's an option which it isn't on a lot of cases

I'm an ASN mum (Audhd/ epilepsy) & am still grieving for the life we should have had 13 years on. But reading your post has me humbled. My boy goes to school, I can work part-time, he can walk, talk, toilet, sleep. I see that I'm so lucky in many ways. You're a warrior OP. It's truly shit that the warriors just need to keep battling. Sending huge hugs 🫂

@Montereyjaaack i can totally relate to how you feel. We’ve been in your position for the last 23 years.

You're in the system now and although the system is shot, at least you have a foot in the door.

I’m guessing you’ve had your carers assessment done? If not, insist on your social worker/family support worker carrying one out immediately. Within that, you can recommend things to help and support you. I had a laundry service collect my child’s washing twice a week. I still had to do all the bed changing etc but at least I didn’t need to wash and dry the stuff.

There should be a manual handling professional in your area. They should be help with equipment like slide sheets (not the plasticky ones) but bed sheets.

We bought waterproof duvet and pillows to help with incontinence.

We had the same with our hospice kicking all life limited children off their books and only having end of life care. However, they did tell us they would still take children where their parent/carers were going through a crisis.

I know you’ve already said you wouldn’t consider residential at the moment anyway, which is probably just as well. Those places are like rocking horse sh1te and for complex disabilities doesn’t get any easier when they become an adult.

We had a mobile hoist funded by a charity, could that help when you’re out and about? Changing places website will show you the closest toilet with a changing bench near you, but we used to change our child in the back of our WAV using the mobile hoist.

Although you mentioned suction, you didn’t say your daughter has a tracheostomy? Unless she does, it’s unlikely she’d qualify for continuing healthcare funding. However, the criteria is slightly lower in adulthood so she may well qualify when she’s 18. (And I realise that will feel like a lifetime away at the moment).

You have probably realised by now, you have to shout loud to get any support from the local authority.

Life is bloody hard with children anyway but factor in additional special needs and health concerns and it feels one long up hill slog.

You’re clearly a fantastic mum and if I can help with anything, please dm me.

I’m sure it can be really beneficial. I just know that lots of us see it as an absolute last resort, despite all of the challenges. We’d rather run ourselves into the ground than have our children live somewhere else. Certainly whilst they’re still children.

By no means am I suggesting that’s the healthiest approach for SEN parents, but it’s the one I most recognise from those that I’m involved with.

Your comment is really inappropriate for this thread.

Sorry. What.

Did you miss the bit where OP said her child has a lovely bond with her, a great sense of humour, a personality.. etc etc?

I’m not talking about the OP’s child . I said generally a conversation etc etc and I think that’s right .

What about looking at a residential school for secondary? She could come home on weekends.
Go back to your social worker for urgent care assessment or review.
Speak to local agencies who can provide the care she needs. If tge cost is higher than the allocation ask panel to approve the amount get your local councillor on board
Where is she at school? What do other parents do? I found respite place fir my ds by talking g to other parents found a residential school which did weekend and school holiday respite he could get taxi on Friday from school (one hour away) and then from there to school on a Monday. Gave a whole weekend from age ten.
Speak to ss about contingency planning what happens if you sick and in hospital? Where does she go? Can you use that place?
Look at shared lives schemes ?

Not on this thread!
What value do you think that comment adds to the Ops situation and her much loved child?

So you commented on a thread where a mum was talking about her much loved disabled daughter, to to say you think society should start killing severely disabled children. You disgust me.

Okay.

Well I doubt medical professionals are going to allow a disabled child to die because it might inconvenience their parents otherwise.

Hopefully, I’ve misread and you don’t mean that doctors should allow some disabled children to die if they reach a certain threshold of disabled.

The Op doesn't want residential , why do people think this is the only option, when it is rarely an option. At all?

Move elsewhere to a cheaper country and get some help

Where is this utopia?

Disabilities as severe and impactful as your child's are really tough. I'm really sorry you aren't getting enough help. You and your child deserve more help.

Sadly, due to media coverage people with genuine disabilities are lumped in with a very tiny number who abuse assistance. No one would want to swap places with a parent with a child with a severe disability with a non or mildly affected child. It's bloody hard going.

Could you speak to the council/care company about the crapness of the carers? 6 hours could/should be a tiny bit of respite for you! Speak to CQC? Xxx

I m saying consider overnight respite and in the near future consider boarding school... because getting overnight respite was essential for my wellbeing. And in an emergency better to have a place the child knows. However much you love, it is hard and all agree... other kids go on sleepovers or get to stay with granny... ours do not, do they? so it has to be ss paid for overnight respite. It's what it is.

You do realise it’s not that simple? Both in terms of making a decision like that and in terms of getting the LA to pay for it!

Yes i get overnight respite too but the Op doesn't want residential school and it's usually a last resort.

How is it unfair? I agree residential care can be amazing, it can also be abusive and terrifying. I can well imagine parents not daring to risk it and also not wanting to be away from the children they love.