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

Honestly, I personally feel differently about adult care and children’s residential.

By the time our son is 18, I’ll be 45 and my partner 55. That may well be fine, but at 28 when his dad is 65 - potentially a different ball game.

Our longer term plan has to be that he lives independently from us, because we won’t always be here and may not be fit to provide his care in our older years. We’d like him to live semi independently or in some sort of residential setting where people care for him as much as we do.

But - while he’s still a child, who doesn’t understand the world well enough to know why he’d even been put into a residential setting, he belongs with us. For as long as we humanly can.

I know of many parents of SEN children who do have to make sensible plans for their later years and how that impacts their children when they reach adulthood, but very few who would consider a change in living situation yet.

We just all take the sleepless nights and difficult days until we’re either too old/infirm, we run out of steam, or it’s genuinely not a safe environment anymore.

Zero judgement from me. This sounds absolutely awful.

In the last year or so I have been thinking of post-18 residential for my ds15.

I am his full time carer and it's exhausting. I wish there was support available.

So, no advice just solidarity from another Mum xx

I previously worked in residential care for adults with profound needs. It was always very clear how loved all our residents were by their families and staff.

I'm fully understand the drive to stay at home with children who have profound support needs, but I don't think anyone who decides to use residential care is giving up on or not protecting their children, they are just making a different choice.

OP you sound like you need a real break. Sending hugs over the air. You are doing amazingly.

This sounds incredibly hard for you and you must worry what the future holds for you both.
Is her father around? Do you not have any family who can give you a bit of support?

It is a battle to get continuing health care funding, and I have taken on that battle for families, some have got it, none had a trache, it's not essential, although does help. It looks for 3 areas of high need across 12 domains. It sounds like OP's daughter would qualify under mobility and commuinication domains, so just need to identify a 3rd. But the application takes a lot of time and a lot of evidence, and that isn't always available, I am a bit pig headed so I just kept applying for the children in my care who needed it.

OP it's definitely worth trying, but it comes down to single words making a difference - ' extremely challenging to interpret commuinication accurately' wouldn't score but 'unable to interpret commuinication accurately' would get 1 of the 3 needed for example.

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.

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

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!

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.

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

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.

Where is this utopia?

Move elsewhere to a cheaper country and get some help

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

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.

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.

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

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 ?

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

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?

Your comment is really inappropriate for this thread.

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.

@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.