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

[extremepie]

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!

Madwoman - nothing about this thread goes against having high hopes for our family members with disabilities. I do have high hopes for DS1. He's highly intelligent. If he wants that, and can hold it together well enough to manage it, he could go to university and end up with a good career in something technical or analytical.

The thing is that most NT kids can have that opportunity just by turning up to the school on their doorstep. I've watched DS1 struggle with the sensory and social demands of a small, caring and inclusive primary school and reach breaking point many times in his first decade of life. I've spent goodness knows how long researching, gathering evidence and putting forward his case just to get him one of a handful of places in a school, 45 miles away where both his sensory and social difficulties can both be accommodated and worked on (he needs much more than to miss lessons for an engineered "social skills" group), his behavioural difficulties can be addressed and his academic needs still met. All this effort with the hope that he will be have as much chance as his NT peers to achieve his potential and become a reasonably independent adult, not destined to spend the rest of his life in poverty but with the opportunity to work hard so that he can play hard.

We all want our children to reach their full potential and be happy :) that's what parents do isn't it? Disability doesn't change that

Quite, Owllady. It doesn't change our intentions, as parents, but does, very often, change the time end energy required to get there.

DS2 is a lot more severely disabled by his ASD than DS1, but, on the whole, he's a happy boy (unless he becomes obsessive about something that can't or won't happen, then whoa!) His language is so severely delayed that we have had to modify our expectations to some extent (though are constantly prepared to be surprised), but we do want him to grow to be an adult who is able to live in the world with relatively little frustration and find a place in it where he is comfortable. Again, this will take far more input from us and from others to achieve than it would for most NT children.

If it's any help, ds2 is at university. He does need a great deal of support, nightly from us, and during the day he has people around to ensure his safety, remind him to eat/drink etc. He has voice activated software for essays because his tics make typing impossible. He has notetakers in lectures and apparently people got quite used to him falling off his seat in lectures fairly quickly! He is getting a first average, so looks like academia, for him, is the way to go.

Staywithme Not to mention that carers having to sign on after their caring role ends are likely to be seen as "excellent fodder" for workfare because they haven't been able to work for a while.

I bet this has happened to a few ex carers.

She wants to be a downhill skier, kitty. Starts her race program next winter. No idea if she'll make it, but she's a better skier than I am now. Terrifying.

I get that the point of the thread is to educate those with no experience about the realities of the situation. I just think sometimes we can go overboard on that theme, and the danger is that we ourselves are reinforcing stereotypes - which does no favours for those folk with disabilities who can and do work for a living/ compete nationally in a given sport, etc etc. everyone deserves the right to be judged as an individuals, and for their individual needs (and potentials) to be met.

Glint, it wasn't your post particularly, just the way the thread was going (and yours struck a chord). Fascinating about the quality of life studies too - I have a wry grin reading that. It's a little bit like that dreadful 'you must be special to have been given such a special child' meme - a load of old cobblers - we just get on and do what we do, special doesn't come into it.

I'm not normally glass half full but I'll fight to the death anyone that dares to judge my kid by her label or the fact she has a disability, instead of getting to know her as an individual.

And while I'm on my soapbox, let's not speak in derogatory terms about injured servicemen and women, or disabled athletes. Short of Oscar P, we don't know their story, and can't judge. In the interests of full disclosure, Dh was blown up whilst serving, and suffered a brain injury (there are a number of spouses on mn in similar boats) - fortunately twelve years later he has little effects, but again, I know how lucky we are. Ds1 has asd-add type issues which may be due to the amount of cortisol he was swilled in in utero (I was 10 wks pg when dh was given 20% chance of survival).

I just don't want us to be ascribing a hierarchy of disability, where those who are capable of functioning to a greater degree in an NT, pain free or independently mobile world aren't worth recognition (or worse, have their experiences marginalised) when disability is discussed. Keep individuality on the table and respect everyone's differences.

I know I'm preaching to the converted. I'll get me coat.

I do kind of agree, Madwoman. Everyone should have the chance to reach their potential and do well but the sad fact is that, with a disability (whether as a child or as a child of a parent with one) it makes everything 10 x harder. Plus what has got people's backs up is the same old posters popping up with no real experience of disability, telling us how easy we have it, how we should be ever so grateful and that we should have planned ahead.

The fact is, unless you are incredibly wealthy, being hit by disability can easily diminish any savings and any insurance money very quickly but these people just keep banging on, constantly. And no amount of us 'educating' them on the realities seems to sink in. This has resulted in some very upset people which is utterly crap when those people are at rock bottom and they need some support.

I live by a Paralympic skier, I have forgotten what her name is but she is incredibly fit

Oh, I know, cat. I can see that (and I would love to be incredibly wealthy - unfortunately for my bank manager that's just a pipe dream) - I just don't want happymummy to inadvertently coerce us into reinforcing negative stereotypes as a means of defending our position. There's a fine line between acknowledging the reality of the statistics surrounding disability and poverty and prevention of change.

In some ways, we were lucky (ha) with dd2's disability. We haven't had the battles for funding. She was handed HR DLA on a plate at 6 mos, then mobility at 3. I am under no misconceptions how rare this is! We were also lucky that dh was supported through his rehabilitation, and is still able to work. We would be in very different circumstances otherwise. Important to recognise that working and getting adequate welfare support is just as much a part of the reality for some individuals as the converse. It's absolutely right that efforts should be concentrated on supporting those for whom the converse is true, but noone's reality should be left unrecognised or marginalised.

Our views are always coloured by our own circumstances - fortunately for happy, she hasn't had to deal with many curve balls. Naïveté and smugness aren't a great combination, but let's not allow her to be the catalyst that divides the broad swathe of the disability community.

I don't think she'll ever divide us tbh. Collectively, we are too strong. But I worry for those at a low ebb or who are new and don't realise she spouts this nonsense every chance she gets.

Just got a Motability car, feeling really guilty now :(

What do the neighbour's think? I'm a feckless, lazy workshy scrounger?

The car looks really showy amongst their cars. What have I done?

Happy trot of pet, nobody likes you, You evil old crow.

Are you being serious sole? I can't tell

The last bit is serious. I think the rest is a pisstake, except for maybe the first part.

Yes very serious. Anxiety about this slowly brought on by now deceased ex next door neighbour. Making the kind of comments a few here made about us living the life of luxury as DS has a Motability car etc.

I'm worrying now about what others think...

Oh sorry Sole - you are usually much stronger than this.

Don't worry. And don't feel guilty.

No pisstake, my DS is blind and Autistic. Why a pisstake? Are you serious?
Suffered enough prejudice to know how peoples attitudes are.

Only idiots and nasty people will think anything negative and they might think badly of anything and anyone so we can't let them worry us,

Yes ok, thank you.

Just fucking neighbour did this to me... Brings it back

I just need your support, so i can hold my head up high. x

There are still a lot of good, thoughtful, understanding people about but they tend to be less noisy and therefore less noticeable sometimes.

Sole you and your ds totally deserve that car , screw what anyone else thinks

You can have all the support you want from all of us.

Thank you. Sorry to be me, me, me but I had to get that out. Mumsnet is my support on issues like these.

I will think screw em/fuck em.

The support you have given each othere is here is very powerful, thank God for you

*Just got a Motability car, feeling really guilty now

What do the neighbour's think? I'm a feckless, lazy workshy scrounger?

The car looks really showy amongst their cars. What have I done?

Happy trot of pet, nobody likes you, You evil old crow.*

Please don't feel bad. Don't let one persons throw away remarks affect you.