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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think that a lot of the time having someone in the family with a disability does mean being long term poor?

575 replies

extremepie · 31/05/2014 14:06

Obviously this is not the case for everyone but it certainly is for me!

I know that families with a disabled member do get extra help in the form of extra tax credits, DLA, carer's allowance ha! etc but aibu to think that due to the often extra expenses that are incurred by having someone with a disability in the family all this doesn't go as far as you might think?

Due to my current circumstances, I am not able to work and I can't see this changing in the near to moderate future unless something drastically changes. This is not unusual, as a lot of us just can't work around all the medical appointments, time off required to look after them etc so working is just not feasible but I hate the idea that this current situation is all I have to look forward to in the future and that my financial situation will not really improve :(

Aibu to think I'm not alone in this and that for a lot of people having to manage the needs to someone with a disability means they are struggle in the long term? In most circumstances if your money situation is tight you can either try and earn more money or cut your expenses but often people with a disabled family member can't do either!

OP posts:
LaydeeC · 31/05/2014 20:39

Expat Sad
Happy, you are an arse - you just won't listen will you?

Never mind, your life isn't over yet. Let's hope the random dice of disability doesn't roll on you or your children.
And Chelsy, anecdote doesn't make data

extremepie · 31/05/2014 20:41

HappyMummy, I'm really tempted to go through all the reasons why I'm in the the situation I'm in but I really can't be bothered to go through it all when you probably wouldn't care and would probably think that all my 'problems' are invented anyway. My children do have a father but when we split he moved to the other side of the country, doesn't work, doesn't provide any financial or physical support at all. In fact, he even told me at one point that he would not look after the kids so I could go to work, probably out of spite!

I live in a cheapish area of the country, I only have 2 children (my disabled child is my second) and will not have any more because I couldn't cope, I do budget but the money still does not go far enough! I live in a rural area so if I were to start my own business cleaning or ironing I would need a car to travel to places and I don't plus I'm terrible at ironing :D

Anyway the thread wasn't specifically about me I was speaking generally about the reality for many people who live with a disability and their families who have to care for them.

Apologies if I have offended anyone, that wasn't my intention I just wanted to see if I was wrong is thinking that the majority of people in the same situation as me are also experiencing financial difficulties and are likely to continue to in the future.

Obviously I don't want to be out of work, I rely on work to improve my self esteem, social life, finances, most aspects of my life but it just isn't doable at the moment :(

Of course there are many intelligent, skilled people who also happen to have a disability who can work and maintain a good income and standard of living but IMO these people are, unfortunately in the minority.

Partly because many workplaces just can't or won't accommodate the additional needs of someone with a disability or because the nature of their disability means they physical/mentally are not able to. If more employers were more accommodating there probably would be more disabled people in work but usually these adaptations require spending money/taking time and they don't want to do it :(

OP posts:
candycoatedwaterdrops · 31/05/2014 20:48

Seriously people, don't waste your limited energy on MiserableMummyofOne because she's the resident benefits troll.

usualsuspectt · 31/05/2014 20:51

This reply has been deleted

Message withdrawn at poster's request.

hellokittymania · 31/05/2014 20:52

How do they move the duck anyway?

Today was it's last day in Ho Chi Minh City. :( They're probably moving it as we speak.

I wonder where it will go after Vietnam.

LeftyLoony · 31/05/2014 20:54

Can you imagine? MiserableParentOfPFB squeaking away to herself and nobody reading it? I'm laughing my arse off.

Smilesandpiles · 31/05/2014 20:57

The duck is pulled along by a tug boat. In oder for the duck to reach various parts of the world it's deflated and reinflated at the new location.

IIRC it's a Dutch artist that came up with the idea. I think he said something along the lines of "I just wanted to make people smile, something that reminded them of their childhood and something that will remain in their memory"

It's burst a few times since it's launch but is easily repaired because of the material it's made from. A bit like repairing an innertube.

BeyondTheLimitsOfAcceptability · 31/05/2014 20:58
Grin
PartialFancy · 31/05/2014 21:00

But if everyone who knew better hid HMOO, her invented benefits amounts would go unchallenged and mislead innocent readers.

Sadly, she's the reason we shouldn't have Hide Poster though sometimes I mentally do so anyway.

Pixel · 31/05/2014 21:01

Hellokitty it sounds lovely Envy.
Not sure how my sarcastic comment (and question that still hasn't been answered by Happy) got us on to a discussion about beach huts in Asia! Smile.

MoominAndMiniMoom · 31/05/2014 21:07

But everyone - HappyMummy is SO busy being happy, and looking after one healthy child - if she can work, so can the rest of us. So what if we have disabled family members, or are disabled ourselves? HMOO is an inspiration to us all.

Just kidding, she's acting like a cunt

Smilesandpiles · 31/05/2014 21:09

Of course she's happy, ignorance is bliss after all.

If my head was shoved that far up my arse I'd be coming out with that shit too!

hellokittymania · 31/05/2014 21:10

I hadn't thought of it bursting, smiles.

I'm glad I went to see it today. I am reluctant to go by motorbike or taxi unless I know the driver well, so I put off going. It was in a very wealthy area, really clean and quiet. And a coffee was FOUR DOLLARS!! So I ended up getting minimart instant iced coffee...

A nice afternoon though.

LeftyLoony · 31/05/2014 21:20

I'm feeling so much better reading all these responses. Those times of utter blackness when I thought MiserableParentOfPFB's posting was the majority view and despised myself just that little bit more....

PeachyTheSanctiMoanyArse · 31/05/2014 21:21

Am not going to read Happy's comments, she's entitled to her own opinion but her posts always give me panic attacks and life is way too short.

We have three with SN, plus one without: earlier this year they found a gene that is damaged and is likely to be the link but nobody really knows. When the boys were little we had three jobs between us, and I rather liked the adrenaline rush (I held two part time 30 hr jobs, DH a FT). It was exhausting but had its own merits above the level of income and we were blessed to have family help nearby. A redundancy and handful of diagnoses later and that's not how it is any more. DH is self employed and a large percent of what he earns go straight back into the business, in the hope of building something real and substantial. I can't work, I juggle four schools (2 MS, 2 SN) and three statements, and every time I get anywhere a new thing emerges- we just got ds3 a placement at a unit for post-11 after what felt like a mammoth battle, to be told ds4 will either need a massive raise in statement hours on SN Placement at the end of Yr2, which is in 2015. I was applying for jobs after the comp placement came through (with little success mind, despite having kept my CV full of studies etc all the time), and now realise I need to get back on the reports / LEA fights / assessments bandwagon all over again. We are still awaiting the dx, after a change in diagnostic procedures was followed by lost paperwork then the retirement of the school team who do the reports.

DS1's increasing age (14) means I need Dh around a lot to help with his aggression, he's as tall as me now. Luckily self employment has allowed that but it has also meant that we have lived below the breadline, dedicating every penny that's not earmarked for the kids (DLA, child benefit), rent or food money to the business. There are no jobs for people DH's age where we are, it's 20% employment, and whilst we may well move one day (as we did before, hence no 'child'care any more), it can't be yet due to the schools we are dependant on. You don;t get to move mid school career and find such suitable places, or even vaguely suitable ones, if your kids have SN. Home Ed would be great with the younger boys but a real danger to me with ds1.

So yes, having disabled kids can affect your long term poverty status; of course it can. Even if you are one of the (apparently statistically a minority) set of parents who manage to stay together, the complete absence of childcare for disabled kids, especially as they cease to be kids and become teenagers, the general exhaustion of 24 hour care,
the fact that no boss no mater how lovely can take a staff member being away 3 / 5 days a week for appointments, and you can't send someone else- professionals never share info so each one is bound to require a family history...)... how could it not?

Long term, we hope to get DH's business (he does sound and light hire and sales) to a stage where not only can it employ me for a part time job handling marketing, admin etc, but also even help the boys achieve employment in a safe supportive environment. It's a great aim and worth sacrifice.

It's also scary, hard, tiring.... DH is doing seven day weeks and always on call... and takes a long time to make anything near a living wage (though the business assets are a blessed security and when we struggle I do find a trip to the office to view the stock helps my sanity). I've got damned good at sewing and my fave skirt is made from broken down jeans that wore through, and I am increasingly blessed by good friends and neighbours who pass on outgrown clothes.

If I didn't have DH, if he didn't have a specialist skill set, there would be little hope and one heck of a miserable struggle.

LeftyLoony · 31/05/2014 21:26

Hmm. Posts that cause people to want to self harm and induce panic attacks.

Just what mn is all about, init.

PeachyTheSanctiMoanyArse · 31/05/2014 21:29

Chelsy's posts are interesting...

I actually have a borderline VI, which will not get better. That's just life, I suck it up and get on with it, like anyone else.

DS3 has severe language impairment, cannot concentrate long enough to dress himself, wanders all night and has no choice in this as his brain is damaged.

DS1 has brief spells of being very able, then collapses under the pressure becomes severely aggressive and self harms. At 14 he has never yet managed to go out alone.

These two are in no way the same as my eyesight. I am hugely positive and enabling for my boys, to the extent that I have studied post grad how to do that, but there are absolute limits. I hope ds1 will go on to independence and I fully expect him to be employed; I doubt ds3 will do either but I try and work towards that however distant a likelihood it seems.

Me? I just need large print books and specialist lighting.

PeachyTheSanctiMoanyArse · 31/05/2014 21:32

(20% UNemployment, to correct my post!)

zzzzz · 31/05/2014 22:02

This reply has been deleted

Message withdrawn at poster's request.

ICanSeeTheSun · 31/05/2014 22:15

As a family we are extremely lucky as DH boss son has exactly the same diagnoses. This means that DH can always have time off or switch shifts.

Also my boss is very understanding, so 9/10 I can get the time off.

NeedsAsockamnesty · 31/05/2014 22:47

op why on earth did you answer her questions.

Have you not noticed she has issues with single parents as well,she's going to come back on and tell you it's your own fault for having children with someone who turned out to be a prick.

But then she would also have issues with you if you told her you were married and a SAHP or part time worker or worked full time but your dh was a higher earner because then you would be sponging off your husband.

Yesterday or the day before she accused a poster who paid 2k more a year towards household expenses than her DH does and claims no benefits that she was a sponger.

In fact I think you got off on bad footing because its clear you are a mother.

Darkesteyes · 31/05/2014 22:49

nahidontthinkso Sat 31-May-14 20:12:56

She was on a thread the other week about changes to CSA. Spouting venom at single parents

Justine has written an article in Red this month. About how "mum has become a dirty word.

Reading between the lines of what shes written im guessing shes seen a fair few of HappyMummys posts Grin

FidelineandFumblin · 31/05/2014 22:55

Out of interest, what IS the difference between a troll and a serial smug goady twat? Is it just timeframe?

BeyondTheLimitsOfAcceptability · 31/05/2014 22:59

Officially, there is no difference. Mn definition of troll seems to vary slightly from the "real" definition though.

Trolling = intentionally winding people up.

BeyondTheLimitsOfAcceptability · 31/05/2014 23:00

Lol at darkest btw. Grin
Yes, i lolled.

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