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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To ask for help because I am miserable, have no life and don't know what to do anymore?

27 replies

AutismMountain · 13/02/2023 20:04

Please help.
I divorced some years ago and since then it has been just me and my disabled and autistic dc who also has learning disabilities.
For the past years I have worked from home, self employed or subcontracted to ensure that I can also care for my child and this has been fine.

DC is a young adult now but still needs significant support, they will not stay in the house alone, they will not leave the house if no one is home and they need significant prompting and supervision although they are also doing very well in many ways.
The only time they leave the house is to go to sixth form two days a week or their morning Saturday job, other than that they do not want to ever go anywhere.
I am also a carer for another elderly relative who does not understand dc needs at all and feels that I should just leave dc to 'give me a break' which actually means going to do things they need help with instead and I end up being constantly torn between the two.

I am completely stuck with my life, I have health issues and very poor mental health myself. Financially the job I have is not bringing in enough money anymore. Dc receives a very small amount of money from their Saturday morning job and higher rate daily living of PIP. From April they will age out of tax credits so financially I will take a huge hit financially there too.

I cannot work outside of the house because dc would be unsafe to be left a significant amount of time and they finish sixth form in June. I do not have anyone to be here if I am not, I am applying for remote positions with more hours but so is everyone else and because I have been self employed for so long I do not even have references.

I have zero friends, I have zero hobbies, I don't know anyone locally, I cannot attend carers events other that online as I need to be back when dc gets back and dc will not come with me.

I am stuck, extremely depressed and a bit lost with life.
Honestly I do not want to be here anymore but I am scared of telling my gp that because dc needs me to be.

Sorry this is long. I just need to get it all out really.

OP posts:
2023gulp · 13/02/2023 20:07

Hello op. Might you qualify for any respite care at all? You sound desperate for a break. Can you join any online hobby groups ??

MyFlagMeansIceCream · 13/02/2023 20:11

Have you looked into supported living for your DC? So they can be independent from you, but not alone?

stayathomer · 13/02/2023 20:17

I always recommend things like even one swimming class fortnightly, or some form of a class, going for walks, jogs or something to do with gardening but even to start with can you work on the tiny things to at least try and make you remember the good stuff? A good book, some music you used to love or tv?

HarlanPepper · 13/02/2023 20:18

I am so sorry to read this.

Would your son's PIP pay for a personal assistant for a few hours a week? I was wondering too about his level of independence, I see you say you couldn't leave him at home for significant periods. How does he manage at college around other people?

Anonymouseposter · 13/02/2023 20:18

Are the social services team for people with disabilities involved. You are also entitled to an assessment of your own needs as a carer . It sounds extremely tough and some respite care or a someone to be with your dc while you get a proper break might help.

BMW6 · 13/02/2023 20:23

I agree with pp that you should look into going forward with supported living for your child.

To be blunt you are not going to be around forever and your child needs to start making steps toward a life without you.

Then you will have more and more time for yourself to go out, meet people and have a lide yourself.

I have no doubt it'll be terribly hard but it is the best outcome for both of you, honestly.

JustKeepBuilding · 13/02/2023 20:26

Does DC have an EHCP?

Have you had social care assessments? A carer’s assessment for you and assessment for DC and the elderly relative you care for.

Have you asked for a credits only new style ESA claim to establish LCWRA in preparation for claiming UC?

FrostyNethers · 13/02/2023 20:32

You can make an application for Universal Credit for your DS when tax credits stop . Ask for him to assessed as LCWRA - limited capability for work related capability. My DS is a similar age and has a similar diagnosis to yours and he got it without fuss. Telephone interview. I applied on his behalf as his appointee. Your DS won’t need to sign on or look for work. It would be expected that some is used for his board/lodging which will help your finances.

Does DS have an adult disability social worker? If not request a formal assessment (and a carers assessment for you) to see you can get support for him at home. Like a support worker to help him leave the house, cook his meals, etc. You can also ask for a supported living assessment for when you’re ready.

You need to set boundaries with elderly relative. Can they get social care support? Buy in carers to free you up a bit?

Original poster
AutismMountain · 13/02/2023 20:35

Oh gosh thank you for your responses.

I have contacted my local carers charity to ask for a carers assessment as they run them on behalf of the council. Supported living is something that we have started to look into. They resent still needing my support but also rely very heavily on it.

The biggest issue with being left home alone is that they leave things like taps, cookers on etc, they will think nothing of putting a tea towel down on a hob that has been on. They have burnt themselves as they cannot manage to drain water from pasta etc or on the cooker. They also panic if I am not there for even a short time and text me constantly (hundreds of texts in a short space), they need prompting to shower, to remember to eat, to take medications etc, they need constant help with timetables even though they do the journey everyday.

As far as they are concerned their PIP is theirs and theirs alone, there is no way they would use any of it for a PA.

In terms of sixth form it really is hit and miss, there have been several meltdowns there, they have heavy support there.

OP posts:
JustKeepBuilding · 13/02/2023 20:43

Are you DC’s appointee?

If DC has an EHCP it can remain in place until 25 or 26 in some circumstances. So support can be secured via that, and should be more than 2 mornings a week now. You need to ask for an early review in order to get it amended to better meet DC’s needs.

If DC doesn’t have an EHCP you need to apply for an EHCNA.

As well as a carer’s assessment DC and elderly neighbour need an assessment of their needs.

Original poster
AutismMountain · 13/02/2023 20:47

'To be blunt you are not going to be around forever and your child needs to start making steps toward a life without you.'

THIS is one of the major issues, this is my exact worry and why I am panicking now really. They need so much support and cannot manage forms or a lot of daily things they would need to and it worries me.

No ECHP, honestly school was absolutely rubbish and I did not realise at that time that I could apply myself until it was too late! They just had dc on what used to be called school action plus and an IEP.

With regards to LCWRA, I have only recently heard of this but dc works a Saturday job so was unsure if they would be able to claim it as technically they work (in a very very disability friendly employee mind). They will be in sixth form until June/July so I am unsure if they will be able to claim UC until after then, their course is classed as full time.

OP posts:
Original poster
AutismMountain · 13/02/2023 20:51

JustKeepBuilding legally not an appointee but DWP, GP, NHS etc all talk to me instead of dc, dc will not even speak to either of them or anyone on phone and cannot respond to letters.

I have not heard of an EHCNA so off to look! Thank you.

To be honest we have just been muddling along for the last 18 or so years absolutely alone and with no support and it has only come to a head when dc is at an age where they would be looking to become more independent.

OP posts:
JustKeepBuilding · 13/02/2023 20:54

You need to apply for an EHCNA now. It’s not too late. IPSEA have a model letter you can use.

A small Saturday job doesn’t preclude someone having LCWRA. They, or you on their behalf if you are appointee, wouldn’t be able to claim UC before they finish their current course as LCWRA needs to be established prior to beginning the course, but you can establish LCWRA now via a credits only new style ESA claim.

Original poster
AutismMountain · 13/02/2023 20:56

Thank you JustKeepBuilding that is massively helpful!

OP posts:
JustKeepBuilding · 13/02/2023 20:57

X post, I should have refreshed the page before posting.

An EHCNA is the needs assessment you originally apply for before the LA decide whether they will issue an EHCP or not.

You need to officially become appointee for DWP otherwise DC can be expected to manage their claim themselves. If DC doesn’t have capacity you should also consider applying for Deputyship.

Towntroubadour · 13/02/2023 20:59

@AutismMountain, big hugs. Very similar situation here. I have two teens with autism and feel very much like I’m a carer rather than a parent. Life is very difficult. All I can suggest is if you have something that you’d like to do one hour a week, you create a routine with your teen. That during that time they don’t cook or anything like that and they know you’ll be back at a set time. Small building blocks to independence.

Daizie · 13/02/2023 21:03

Definitely supported living, funded by the LA. DC can live an independent life from you as this sounds like an intense amount of pressure on you! I would also be making decisions with PIP if it benefited you as if DC needs someone, it doesn't have to be you and its unfair that it's you when you're struggling.

Original poster
AutismMountain · 13/02/2023 21:04

Thank you, I will look into the appointee information, this is something I have been worrying about in general as if dc had applied for UC and had to attend meetings at the job centre alone it would be a nightmare as they would not understand half of what they where told but it would not necessarily be clear to UC that they did not understand!

Towntroubadour thank you.

OP posts:
RedHelenB · 13/02/2023 21:04

What does their Saturday job involve? Any chance they could get more hours there when they finish sixth form?

JustKeepBuilding · 13/02/2023 21:10

The benefit of applying for an EHCNA is if you get an EHCP it can include therapies and preparation for adulthood provision which will help DC. It could fund a residential college too.

Noonesperfect · 13/02/2023 21:24

Just wanted to say I have moments of despair as well. I am like a carer for my autistic young adult, and it can be a very lonely road at times. Hope some of the suggestions from previous posters help. You sound like you are an amazing parent OP. Obviously it's good to make plans for your child's provision in the future, but it's also good to sometimes just take a day at a time, especially if you're feeling overwhelmed. Hoping things improve for you OP, Flowers

SleepQuest33 · 13/02/2023 21:38

So sorry OP, it sound really hard for you, you’ve done incredibly well for 18 years with so little support.
my son is 18, we do have an EHCP and he attends a special needs school/ college.
DH and I are also very concerned about the future, we have made contact with adult social services to be on their radar with a view te getting DS living in supported accommodation by the age of 25. he doesn’t want to hear about living away from us but he needs to become independent and we need to have some freedom at some point.

Original poster
AutismMountain · 13/02/2023 21:52

RedHelenB without being too outing dc works with young children but with a LOT of support. The employer is brilliant and very supportive and more hours is something we are both hoping for.

Thank you everyone. Sending love to those dealing with equally hard situations. It is tough!

OP posts:
Orangesandlemons77 · 13/02/2023 22:08

With your own health issues maybe you would qualify for support via UC / ESA too?

Don't give up. Maybe a welfare advice place could help.

We are due to move from tax credits to UC too next year and it is daunting. Hopefully when it is sorted out things might seem better.

FlappyValley · 13/02/2023 22:10

I don’t have much to add to the good advice you’ve been given by pp already but just wanted to say you sound like an amazing mum. The fact that your DC has a job and is engaging with their education is brilliant - you’ve obviously supported them really well. My DC is also autistic (though still primary age) and I found joining a couple of local online groups for parents of kids with SEND helped me feel much less alone.