I can't afford to live normally anymore, what's the point?

[savingallmylove]

No this isn't a suicidal thread! I'm not depressed. But I don't see a way out and it's terrifying

I don't have enough money coming in to cover food for myself properly. I'm living on soup and a few handouts from church (that I don't attend)

Now, I can't work so what do I do?

I'm a carer for my disabled child. When he's at school, I'm sleeping mostly or running errands that need doing, life admin etc

My monthly income no longer covers everything. There is no wiggle room, and I don't even have 'Netflix' or Spotify - my mum pays for my account as it's her family account

My son does swimming and horse riding but they're paid for by his DLA.

What on earth do I do? No it isn't a begging thread before someone reports me - My mum and dad will certainly feed me if I was starving or short!! But others aren't so fortunate to have family help if they're desperate

You can all fuck off. I have a 21 year old son with ASD and a chronic sleep problem. I have attended hundreds of fucking sleep clinics and he takes melatonin even now as his sleep is shit. I have all his life managed on very little sleep and worked. I worked 12 hours then 16 then 21 and now 28 as gradually over time he has improved albeit slowly. I was trying to suggest something as there is no point wallowing in your own shitty circumstances it doesnt help. If I have offended you OP apologies. The rest of you can get lost.

Fuck me! There's a bunch of bastards on this thread.
Usual judgemental twats!

Sorry that this is so awful for you OP.

Tech ate my reply so I’m going to try again and a penny has just dropped for me about the answer to ‘what is the point?’.

(btw I have a disabled child with high needs, have to catch up on sleep sometimes and have paid for therapeutic riding with DLA in the past. My life is demanding, yours sounds much tougher).

It’s a really important existential question and you don’t have to be depressed to ask it.

Have you read ‘Man’s Search for Meaning’ by Victor Frankl? It may be possible to find a sense of meaning in your endurance of suffering. There is a deliberate policy of food bank reliance as a plank of ‘welfare’ it achieves a lot of different political outcomes. It is deliberate that a lot of people/families are not supported at an adequate level by welfare payments and therefore rely on family, friends and charities or suffer extreme lack of the essentials of life.

You are championing the right to a dignified and as far as possible a decent quality of life for your son. You are not accepting that a Ceaucescu era orphanage standard of bare survival is acceptable. You are creating a loving home and the happiest possible life. To pay for this you accept indignities and deprivation for yourself. If there was justice you would be well supported and applauded. You are the human shield for your son. You have my deep respect and admiration.

I hope you will receive a little more support, find a wrinkle or two that eases things but more than that I hope we live to see change and come through this harsh time and enjoy life without fear.

The use of italics should give you a clue about how to read my comment. I deliberately used the same wording you did, in order to express that the opposite of your opinion is in fact true.

What was that about a lack of intelligence again? 🤦🏼‍♀️

I am so sorry.. I am alone too..It is me who is unwell..my son is autistic but high function..It kills me we cannot do much. His father dissappeared so not help. Please dont feel too alone..there are a lot of us from what I can see...hug

I think there are some really shortsighted replies on this thread about what caring for a disabled child is really like.
OP- it might be worth referring yourself to your local children with disabilities team to see if you would be eligible for direct payments for some of your sons caring needs? I know it would necessarily give you any additional money but it would perhaps give you more flexibility to explore other options to bring more money into the household?
It really is difficult for parents of children with complex needs and I hope you're ok xx

Truly vulnerable people shouldn't post on MN, you get the usual nasty individuals with zero empathy, and MN ought to moderate such threads much better especially at night, because struggling people nearly always post in the evenings.

@Neome Mankind's Search For meaning is a brilliant suggestion. I reread it every few years.

I cannot believe the unkindness on this thread. The thought of my children becoming severely disabled and what it would mean is one of my biggest fears. To live a life on benefits, not able to work freely, access wraparound childcare, to be sleep deprived, terrified of the future...I don't know how I would cope. I know families in that situation...often single parents because the dads can't cope and walk away. And people rather than empathising are suggesting a severely disabled child have one of his few pleasures taken away and basically tell the OP to shut up whinging! If you have healthy children you have no right to be so unkind. No right at all. You are lucky beyond words and luck is all it is.

Sorry that should have said 'wouldn't give you any more money'

The money you could save from the horse riding could be used for numerous things, meaning that you would have more of your own money left for family essentials, i.e. food, bills, warmth, food.
You can use the DLA for care and mobility and additional related expenses, which can be anything from taxis, food for both of you, outings, laundry, heat, bills, savings account for your child. It's really tough, and so hard to stop treats/spending, but sometimes you have to let these things go, even temporarily.
Have you applied to your local authority for a full assessment of need for your child AND you as his main carer? A direct payment for him would fund a carer/relief/PA and you would be assessed for a carer's personal budget to spend as you wished, if this would meet your assessed needs.It could even be used to part fund the riding if you could show that this shared activity benefitted you emotionally.
Alternative, ask your local Carers' association for a carer assessment for you.
Good Luck -🤗

🙄🙄 the money isn’t hers to spend. It’s a benefit for a specific activity.

I wish people would at least read the posts properly before passing judgement on people’s lives.

@savingallmylove Your situation sounds really tough. I’m so sorry you’re having to live like this. It’s very unfair. I have no advice , but just wanted to say I hear you.

@Threadkillacilla @pyjamafashionista Thank god there are others on here who haven’t had an empathy bypass.

I know this is a serious subject but 😆😆😆 at ‘cunt cupboard’!

@GerronBuzanDoThaWomwok OP would save £20 per month if they quit horse riding, do you honestly believe she’d be rolling in cash by giving that up?

Agree, it’s a curiously black and white mis-interpretation of the rules.

I have read the whole thread and I’m finding some of these comments bloody awful and disgusting. I’m actually embarrassed for most of you.

If people used the phrase "therapy for your profoundly disabled child" in place of "swimming/horse riding lessons" then I'm confident that at least some of them would realise how utterly idiotic their comments are and not post them.

@savingallmylove You must be fucking knackered. I'm so sorry things are so tough. You've had some brutal responses on here.

I totally get why you don't want to remove the horse riding... so what about the swimming? Would stopping that for a while free up any cash for you to get some respite care? I'm thinking along the lines of a carer who could take your son out for activity or park trip etc. That extra couple of hours of respite might help.

Just suggesting the OP works whilst he is at school is not really sustainable, as she is already 'working' round the clock, (including during the night if her son only sleeps 4 hours at a stretch). Having said that, if you could get some respite for a couple of hours or so, is there anything that you could do to make a little extra, that wouldn't take up too much time? Dog sitting, ironing - that kind of thing.

Yes, a grand total of around £7 a week.

If it’s of interest to anyone @Joannechapman made me wonder if there were support communities anywhere. There’s this thread on mumsnet which sounds broad based, or you could start a similar one on that SN board. www.mumsnet.com/talk/special_needs/4592899-primary-school-auties-10-summer-and-beyond-2022

Sorry I haven't RTFT.

" OP, have you had a care assessment for him and a carer's assessment for yourself? If not you should request them.

Yes I've had both. Granted 15 hours a week - the care agency we used never have anyone available "

who is his care coordinator OP? (What does it say on his care plan, which you should have a copy of?). If it's not you, then it's not your job to organise his care. It's probably his social workers job. If you've been allocated 15hrs of care for him per week, and that's supposed to be by Direct Provision from SS and not Direct Payments to you from them, then someone somewhere is being paid by SS for providing 15hrs care per week for doing absolutely nothing, since DS isn't receiving it. Get onto the care coordinator and complain, it's their job to sort this. If the care agency can't provide someone then the care coordinator will have to organise another care agency, one that does have some staff available.

But keeping a roof over his head and keeping his carer fed is using the money for him.

Not being able to work and caring for your child is nothing to be upset about, you never wanted this, you are doing your best...I worked as a TV Producer, I have a degree..I had savings.. I got seriously ill...the 'conservative' father ran off...dissappeared..now..I am only disclosing because we get judged harshly without people knowing the whole situation. You speaking up to share you are struggling and lonely is brave and honest..so lets get you some support..I would happily be your online friend and hold you in high regard as a mother of a disabled child. Of course your child should get to ride a horse..! my god..keep them in all the time..it is just cruel...bless you sister..my heart goes out to you.

OP I do understand why you are so reluctant to spend your DS's DLA on food. However, if you don't eat enough you need to ask yourself what happens to your DS if you become ill and unable to care for him?

You obviously need to catch up on your sleep while he is at school so working is out of the question. I'm wondering if you could find an hour to do market research or surveys - it may be worth you checking out the ongoing 'Earn £10 a day' thread on Money Matters -

www.mumsnet.com/talk/legal_money_matters/4647770-earn-ps10-a-day-spooky-season-october-2022

Many things may not be suitable for you but you may find something you can do to earn a little more which will help with buying food.

If child sleeps 3-4 hours per night then you need to sleep then too. If you drop him at school then sleep another 2 hours. That would give you 5-6 hours. That is all I get too. You could be working from 11-2pm every day so 15 hours each week. That would buy you food.

So to all of you sending this woman kind words and support, THANKYOU..because this is what being a decent human being is...supporting when asked..showing compassion..a kind word..is everything to a person who is feeling alone and finding it tough..could be any one of us at any time.