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

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.

How do you think your post is helpful?

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 .

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

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.

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

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.

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 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, 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.

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

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

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.

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.

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

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.

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.

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.

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

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.

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.

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,

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

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

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 .