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?

I agree. If it was that easy to access then we’d have done it by now. My daughter is 35, up until 2 years ago the only respite option was a flat up 2 flights of stairs- she has mobility problems- or a carer who turned out to be the most unhelpful person I have ever met. At one meeting she actually threw up her hands and said but what am I actually supposed to do with her ie my daughter ! My social worker quickly pointed out that it was hard and this is exactly why her mum - me- needed respite.
Then two years ago a lady near us set up a respite service from her home and she is magical! She provides what everyone should be entitled to, the demand for her services is huge and she is expanding constantly.
I understand the battles with social services but they really should be assessing your daughter, and also should do a carers assessment on you too. We’ve just moved areas and this new council has been pretty helpful, but I do understand the problems, finding a social worker, hoping they don’t move on and then you get a different one. And finding the time and energy to deal with everything, it’s exhausting. X

Chailey heritage
Treloar

And a few more around the country are day and boarding schools for complex needs from primary to secondary then there are boarding colleges from 19 to 25 age range. They exist but of course a parent needs to want to access those
some offer respite weekends overnight eg the one my ds accessed near London for overnight respite.
Foster carers/shared lives/shared care exist. I never found anyone suitable.

Spelling out to ss that this is needed wanted cam start the process.

Alternatively push for more direct payments hours to employ staff in home. So at some point a parent can eg take a night away and child stays in home environment.

It is not easy.
We don't want to let go...but our kids can adapt surprisingly well when we let them go...

No one will offer...you have to ask. Use the care assessments and ehcp process. From age 14 transition talks begin on annual each reviews and you can start specifying plans like supported living or residential college post 19 or the child or young person needs monthly overnight respite weekends. The sooner you start asking the better.

If is one single parent who let s face it will die at some point then planning for future and for contingency is so important.

sorry I didn't mean to make it worse by quoting that. It was insensitive in hindsight.
Just to say I understand and acknowledge how tough it all is. Which is no help at all I know but you are not alone x

I think your husbands role in this really is key. The implication from your comments is that he doesn't do much of the caring work? If that's correct then I expect thats a major stumbling block for accessing other services. It would be assumed that your husband can step in to give respite. His income might also affect what financial support you are eligible for. How is your relationship?

Probably because in a lot of poor countries many disabled children are institutionalised. Or die due to lack of healthcare.

I recently met a Ukranian mum at an autism event. She said that the care, benefits, schools etc for disabled children here are a million times better than what she could access back home before the war. It made me reflect a lot on how much worse things actually could be.

May God ease your burdens 🙏❤️

Yeah, mother of a disabled son who has periods of being extremely high needs (hundreds of seizures a day).

Anyway, I used to make the mistake when social services asked of saying that I could cope. I should've said 'No way!' But I was always scared they'd somehow find a way to take him off me. My fear of losing him meant I became paranoid about somehow losing him.

Your council are legally obliged to carry out a carer's assessment. They can't dodge this. It's the law.

Social services also need to carry out an assessment for your daughter and from this they can award you DIRECT PAYMENTS which means that you can directly employ your own help. I can tell you now that six hours a week is nowhere near cutting it.

It's just more stuff to do, but once it's in place it does make a difference.

If you do manage to get a personal budget and employ your own people I would recommend looking at student OTs, speech and language students, physio students. They have the same pay as usual caters but come with a lot more knowledge and common sense often

I can't even begin to imagine how hard that must be for you, OP.

A while ago, I met a group of parents - all with children who were living with serious life-limiting illnesses and conditions - who were seeking to create their own housing solution where several families would live within their own self-contained homes but share resources, support and care needs.

They were a fledgling group, with little money of their own to invest but looking at various models of funding and investment that might go at least some way to achieving their aims.

They were SO inspirational and determined but, regretfully, funding for community-led housing initiatives has all but gone now. I could absolutely see how this type of intentional community, created for the purpose of giving security and in-built support to families with children who require so much care, could improve lives like nothing else.

You know the expression: 'It takes a village...'? I often think of that group and wonder how they're doing. It doesn't look as though they managed to actually create their dream - and the sad fact is, when you're trying to just get through the day caring for a severely disabled or ill child, there's very little capacity left for much else. But, I really do think housing schemes created specifically for such a purpose would be an incredible thing and offer a level of life improvement far and away beyond the limited range of options available to families currently.

Sorry but this shit can fuck off. If there was a god then they’ve chosen to do this to our children.

Just because you're an atheist and ungrateful doesn't mean we all are.

@Safxxxit was a bit of an insensitive comment. Really it was

Each to their own

@Safxxxlearn from it maybe - learn better ways to share your faith?

You need to learn to mind own business, I wished OP the best ....all you can do is nitpick

And here it is. Knew it wouldn’t be long 🙄

Tell the LA you aren’t going to do it anymore. Mean it.

I promise you they’ll put help in place. They 100% won’t take your child into care because there are limited placements and it would cost hundreds of thousands a year.

Sadly this is the only thing that works.

Just popping back on - I needed to sleep last night when she did (school holidays - I am busy all day with her and then try to sleep when she does).
I would never ever put her in residential care unless I were to be utterly incapacitated.
To answer a couple of things - she is “PEG” fed - her food goes directly into her stomach. That’s something that’s probably so weird if you’ve never experienced it but it’s so normal for us it doesn’t register and it doesn’t cause problems. She can sort of eat ice cream and she tries very hard to eat other foods (but can’t).
part of the big issue is that she doesn’t have a diagnosis.
She is very capable in so many areas of life - she uses her wheelchair independently (but has zero concept of danger and has almost escaped into traffic of out of shops).
Shes the sweetest little thing. Everyone who knows her adores her.
I feel slightly better today.
I know it is hopeless in the end - she cannot be independent- but she and I have a bond that’s almost beyond language or being able to express it. Without being weird - it’s like when you really bind with a beloved animal- they don’t speak but together you “work”.
Shes grown stronger over the years.
She loves stories and knows every word of her books off by heart.
She understands jokes and has the cheekiest little laugh when I make jokes.
I know she understands many many things ( not just routine or me telling her what’s going to happen). I felt dreadful as today she was present (had to be) for a conversation about trying to get her care (very soft overnight respite) which involved having to talk about her life expectancy and her face looking at me just broke my heart (sorry this is making me cry).
I know she will never live like other kids but I feel like she’s the best thing I ever did with my life.
We lost her sister at full term (stillbirth due to massive placental abruption, nothing wrong with her) a few years before she was conceived and I felt like if my first full term daughter had survived I’d have been a shit parent.
My little girl is exhausting but it’s not her fault and she is never misbehaved or whatever you might call it - her medical needs are fairly complex and there’s no external support- but I really wish there was. I fear if I drop dead etc.,
Even though some of you disagree with each other about suggestions and so on I’m very very grateful for so many wonderful responses (and I’ll re-read them more slowly!)

You are brutally honest about your child's needs, so I will be brutally honest in return. I think your DC needs a spend of several million pounds to make everything work to fulfil your child's needs. I am not willing to fund the rest.

@Montereyjaaack She sounds like a wonderful little girl 💜 💐

@Montereyjaaack

Your daughter sounds like a very special young lady. Your love for her radiates off the page.
I think that its the most severely disabled children and people in the world who the rest of us have most to learn from about the true meaning of humanity, unconditional love and put our first world problems into perspective.

Im not a person of faith myself but my nan used to say that God only sends us what we can cope with. I do feel there is something in that.
Your amazing daughter has an amazing mum. I hope you can get some respite in to make life a bit easier.
Many many good wishes from my family to yours x

What on earth are you on about? What does 'I am not willing to fund the rest' mean? No-one asked you to fund anything?

That sounds heartbreaking, my son has complex disabilities he's severely autistic, non verbal etc but thankfully he's extremely healthy
We do get overnight respite now ,it's in a kind of children's home for children with disabilities, but it's only used for respite
We get two nights a month which helps massively
I know in my area there is a similar type place for children with added health issues
My son goes to a special school for children with severe and profound learning disabilities, some of the children have PMLD
For all my sons disabilities I'm very grateful he doesn't have additional health issues.

WTF ??
Whose sasking you to fund anything???