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 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.

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?

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.

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

Zero judgement from me. This sounds absolutely awful.

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.

Agreed at some point my son will have to go into supportive living but it's not something I'm willing to consider now, hes only 15 .

Hello OP,
i have not been able to read all the reply’s. Have you support to apply for a Children’s Continuous Health Care Plan? Do you have an EHCP insurance place? I would recommend your local SENDIAS service for additional support.
leedscs.trixonline.co.uk/chapter/children-and-young-peoples-continuing-care-national-framework

Wish I could give you a hug. Really does sound hard but you sound like an amazing mum doing your best. And clearly you daughter is amazing too. X

I cannot help but feel how let down you continue to be via outside agencies. I read your post and my gob dropped in admiration. You are wonder woman, its gob smacking to me how you even get dressed let alone get your wonderful daughter out and about having fun. I don't know what to say or suggest but blimey OP what an incredible woman you are,

Your post makes me feel sad and angry. You and your daughter deserve so much better. You're not asking for much. Good quality care a few days a week and monthly overnight respite should be essential. Sending tons of good thoughts and I really hope your situation improves.

If she’s not already under the continence team then push for a referral. There must be something they can do to manage her bowels to help improve your ability to go out more.

I find that very hard to read. How hard your life is. But your child brings you joy, which is lovely to hear. I have no words of wisdom for you but hope that your obvious resilience and strength of character gets rewarded

Hi OP,
I'm sorry that things are so tough.
I work in a short break service for adults with learning disabilities and I know that the local authority has a short break service for adults with more complex physical disabilities too. Some of the young adults I work with have used local short break services as children and transition to adult services at 18.

I would say you should make sure that you have a care needs assessment (as a carer) and emphasise your need for overnight help for sleep/rest from your caring role and time for your other family members. If you haven't had a care needs assessment contact social services and ask for one - you are legally entitled to one.

It is difficult to get the help you need but the people that push for help are the one's that get it. The sooner you start pushing the sooner you will get some meaningful help.

So sorry OP - that sounds extremely difficult. Re respite carers - do you have anyone you know who’s good with your DD? I ask because if you yourself know someone you could ask to switch to direct payments, then you don’t have to use the council carers and can pay people of your own choosing.

Sending you a big squeeze, and also to recommend the merina coil like PP which is a tiny dose of progesterone only and usually completely stops periods.

Are you fucking joking? The council won’t even fund carers or grab rails if they can get out of it.

I’m sure the people suggesting go fund me mean well, but it’s extremely humiliating and quite patronising. We don’t want to have to beg for charity. We want the services we should be ENTITLED TO from the council and the government.

I’m with you, OP. This is SHIT. It’s currently midnight. I’ve just changed a soiled bed, pjs, child and am 20 minutes into the 3 hour process of getting him back to sleep, which is just finished for the first time about 20 minutes before the bed wetting incident. Today I have been clawed, slapped, bitten, kicked, had my hair pulled out by the handful, and a window and yet another tv smashed.

We get 4 hours of paid care a week, and this week and last week it’s been cancelled. We got to the top of the SEN holiday club waiting list after a 4 year wait and were offered one afternoon. Not one afternoon a week, one afternoon ALL SUMMER.

I am so fucking tired.

That sounds so tough. Are there any parent support groups on your area?

Hi, disability parent here two. My son is two, had tuberous sclerosis complex, severe epilepsy and global development delay. He’s not mobile and non verbal. I’m a single parent with no family about to help so I get how tough it is.

im not sure what your daughters condition is but have you applied for help through the rainbow trust? Family fund are also good and if you need a holiday, apply through Hannah’s Appeal Charity and they’ll sort you out. I try to steal moments of joy where I can, but it’s so fucking hard and no one not in this situation gets it. Linking up with other parents like us makes me feel like I have a bit of community. Message me if you want to chat x

I'm sorry OP, that sounds horrendous.

To give you my perspective, I come from a much poorer (European) country, and at no point was I ever aware of situations/cases like that. Neither is my family, and they all work in healthcare there.

I'm not sure why that is the case. Either the incidence of such conditions is much much lower, or my country must have systems that make it such that no parent needs to sacrifice their life like this.

I'm so sorry for you, you're a human being, you shouldn't have to sacrifice your life like this.

You are incredibly strong for dealing with that for so long. You are amazing, and perfectly justified in your frustrations. I'm afraid I don't have any advice to offer, I just wanted to send a big hug and a handhold x

I'm sorry, OP. It is really, really hard. Especially when you have to fight for absolutely everything.

My son suddenly became disabled 18 months ago after complications from an illness. He doesn't have any learning disabilities but he is physically disabled and bowel incontinent. He can eat but because his bowel doesn't work correctly, he's also needs nutrition through a central line to maintain his weight which he has overnight for 12 hours.

I'm so grateful that he survived because he very nearly didn't but I also miss my old life and my son's too.

You cannot simply put a child with complex needs into residential care. This option doesn't exists. There is no residential care for 10 years olds. I don't know what planet sine people live on to think there are options like that. and parents of disabled children still love their children dearly and want to look after them at home - we just need support.