New to the group

New to Carers Connect
1

Hi to everyone.

New to carers uk.

Hope I’m welcome with my carers concerns…lol
I do worry often that because my children’s disabilities are mental rather than physical, that I won’t be accepted in places like this? :sleepy:

I have 5 children aged 20, 19, 15, 14 and 13.

4 are diagnosed with varies Autistic diagnoses as well as many other diagnoses that are associated with Autism. The child undiagnosed is awaiting his assessment for ADHD and Autism.

All still live at home and all but the 14 yr old are still in education.

The 14 yr old is at home with me 24/7 as SEN education can not find a placement that would suit his Autistic needs. He had been home on and off since 2013.

I care for them all 24/7, from the usual mum things, such as cooking, cleaning etc but also deal with all the older ones financials, paperwork, doctors etc.
All 5 need support, either physically or verbally on hygiene matters, food issues, clothing, travelling, financial, medical, mentally and emotionally.

I do not have any outside family support on either side.
My husband, dad to all 5, has is own issues such as PTSD, and I am his only form of support as well.

I have no rest bite. :sleepy:

With regards to benefits, I am on carers allowance, but as the eldest are now classed as an adult for the 20 yr old, I have lost all benefits for her as the local councils expect her to be self dependant and in April when my 19 yr old turns 20 I will lose even more.

I find it unfair that u are only allowed to claim carers allowance for 1 person.
I’m sure many on here will disagree but I am caring for 2 adults and 3 children. I now get No financial support for looking after my eldest! And as already said the same will be the case come April for the other adult.

I can not work, dispite having many qualifications in varies areas, due to having to be at home for the 14 yr old but also because the others need me, on average, 4/5 days a week, with an issue at school/college, that requires me to except phone calls throughout the day and even visit schools/colleges to resolve issues raised.

I believe that there needs to be a massive shake up across the board for understanding Autism’s needs when they turn into adults.

Very little help and support is out there for adults with Autism and financially they are expected to jump through hoops to prove they are incapable of working due to their disabilities.
How are they meant to try and live a normal life if there’s no support there, emotionally or financially?

My apologises if this annoys anyone, that may feel, as a mum of Autistic children, that I’m not really a Carer or not in such a hardship as others with different disabilities.
I really just wanted to rant.

It’s hard having no support and no rest bite.

Sorry once again.

2

You are very welcome here. Sadly, forum members with children with ASD issues are also here, and can give much more support than I can.

DO NOT APOLOGISE.

If anyone should apologise to you, it’s God …I cannot but look on you with disbelief that you are actually coping with what you are coping with…

3

Hi Karen
We welcome all carers here, and many of those have multiple carees, but not many have as many as you have.
Because caring is a heavy burden for most it may take some time for people to respond directly so don’t despair if there are few responses initially.

Meanwhile here is the link to a whole lot of threads to do with autism etc. You may learn something, not the least being that you are not alone and there are many others in similar situation.
https://www.carersuk.org/forum/specific-disabilities-conditions/autism-asperger-syndrome

I have a relative on the spectrum and can say that he is now on the path towards supported independence. You are right that as an adult all the money and benefits goes to them so it may help ease your burden if you start to push for your adults to get the external help and support that its out there . Yes you know them best and can help them best and it is a daft system that only pays for external support, but it is the only one we have.

4

You are VERY welcome here. My son is 39, brain damaged at birth. Fit as a flea but intellectually impaired.
I’m just off to bed, but if you clarify what, if any, disability benefits your children receive, I might have a few ideas which help.
Are you the DWP Appointee for you over 16?

5

Hi yes I’m appointee to the 2 older girls. Just been through the process of pplying for universal credit for them both because their colleges should be entitled to it. I always thought that if they were still in full time education, they weren’t allowed anything.
Waiting to hear if they are allowed it.

If that’s a no then 20 yr old on PIP, which got reverted twice before I appealed and got it on a fault that the assessor made at time of assessment. Otherwise the PIP questions just don’t apply to mentally disabled, it’s more suited for physically disabled.

19 yr old is still on DLA, dreading when they want to change hers as she’s more able than the older one, so she won’t get PIP. Then she’ll have nothing coming in.

6

My son is 39 now, so I’m not sure about the very latest rules. He went onto full Income Support in his own right, although he was at boarding school. I checked a number of times that this was right, but it was!
Remember that DWP only pays people what they consider to be the bare minimum, so while she lives with you, the majority of that money is “housekeeping” for you. It will cause huge problems later on when she leaves home if you don’t set good rules now.
Be sure to have a separate account for each child, into which their benefits go, and then set up a direct debit to pay you the housekeeping, again, to avoid problems later on.

7

“My apologises if this annoys anyone, that may feel, as a mum of Autistic children, that I’m not really a Carer or not in such a hardship as others with different disabilities”

As a general rule, it is MUCH harder caring for someone with any kind of ‘mental infirmity’ - I call it that simply because of course ASD is not ‘mental’ as such, but ‘neurological’.

With someone with a physical disability/illness you still ‘have’ the person - they are there ‘WITH’ you, rooting for you, being your companion, being actively involved in their own care, UNDERSTANDING what you are doing for them, and how much, and the toll it takes.

But with any kind of ‘mental infirmity’ leading to ‘special needs’ of any kind (again, I put all this in quotes to indicate I realise this is not really the ‘correct’ term!) (not sure what is!), ‘they’ are not necessarily ‘there’ for YOU. ie, they can’t really understand how much you are doing for them, why it is so ‘hard’ to cope with them, etc etc etc etc.

I used to say about my poor MIL with dementia ‘if she knew the hard work she was, she wouldn’t be the hard works she is’…I would say that applies to anyone with a ‘mental infirmity’ whatever causes it.

I have to say I think you were either VERY brave or VERY hopeful, or both, and VERY loving to have gone on to have FIVE children all of whom have proved to be non-neurotypical. I know they bring you joy, but oh, the work, the work!!! …

8

What’s the situation with your husband? What are his issues, and why, and how well is he dealing with them?

ie, to what extent is he ‘part of the solution’ and not ‘part of the problem’?? How much help, in any way at all, does he give you with your children, and what ‘could’ he do, do you think. Any idea what caused his PTSD? Is it being ‘treated’, etc?

In other words, could things ‘improve’ with your husband, so that he is more of a ‘support’ and less of a ‘drain’ on your energy (physical and mental and emotional!).

It does sound, sadly, that you are ‘carrying’ an AWFUL lot of people alone on your shoulders…

Do you have anyone else in your family - brothers/sisters/parents - etc, who are there for you (even just to rant at or weep on!) (hopefully to do more in a practical help way as well!).

Or is it all ‘just up to YOU’…

Being ‘sole carer’ with no one to share it with is VERY hard. I found that the hardest aspect of inheriting my MIL-with-dementia when I was a widow, and her surviving son in the USA. It was just ALL up to ‘me’…I felt VERY isolated (and all I had to cope with was an 89 year old lady with dementia!)