benefits and made to feel guilty

[feelinuncomfortable]

My DS, now 10, was born without part of his arm and a couple of years ago we were told we could claim DLA. we now get this at the middle carers rate although it all goes into his bank account to pay for adaptions he needs and for prosthetics as he gets older - NHS ones are awful and he won't wear them.

I had to leave work as they were very cruel with regards to time I needed off for hospital appointments, OT to talk to teacher meetings, regular prosthetic trials etc and it all got too stressful.

I was then told I could get carers allowance which I claimed, and then my tax credits also went up from the basic £40ish a month, to £170.

My DH earns an okay wage so I always felt a bit uncomfortable getting this money anyway. we are no way well off financially but we get by...although it may have been a different story if I didn't get CA and had given up work long-term.

Anyway, I never talk about benefits to friends as I know they wouldn't understand, they are all hard-working, struggling etc. And I think they wouldn't like the fact we get £500 a month in benefits due to DS1's disability. My friend even raised an eyebrow that I got into the cinema free with him (CEA card).

But, as my family keep reminding me, they don't have to cope with the constant struggle of hospital appointment and the whole psychological and emotional aspects of his condition. And if this money makes his life a bit easier in the future then we shouldn't feel at all guilty.

Anyway, I accidentally let it slip I'd be getting the surestart maternity grant (after chatting to a friend about how it was going to be difficult buying all new stuff for DC3). She immediately asked why I was entitled to this which made me have to say we get higher than the family element tax credits because DS1 gets DLA. Her face was a picture, saying he didn't cost anymore than a child of his age would anyway.

I couldn't be bothered to go into detail but now I feel guilty

don't feel guilty, some people just lack a "nice" chip at times - bear in mind that you had to leave work due to your DS's disability - which will have lost you more money in the longrun than a blinking 500 quid grant.

DON'T! If you were not entitled to the money you wouldn't get it - simple as that.
You fit the criteria for entitlement, you're not fiddling anything, You have nothing at all to feel guilty about.
Sounds like plain old jealousy to me, ignore it

thanks everyone, sometimes I feel bad, like I'm cashing in on my son's disability but if makes his life easier, even if it means not having a totally stressed out running around upset at work mummy, then so be it!

Just needed someone to make me feel better, which you have done

I feel the same . We get DLA for DS who is only 6 months old. I put off applying believing that I didn't do that much more than other parents of a child the same age. He is my only child and so I had nothing to compare it to. We applied just before christmas and got the high rate too (and the xmas bonus - woohoo!). Putting it all down on paper made me start to realise that I do so much more - thats just thinking of his twice weekly trips to the hospital! I medicate him, therapy him, change him (lots!) and soothe him because he is my son and I love him. It is normal for me, and I am not enitirely comfortable receiving money for it, even though I know we are entitled to it. I try to think of it as his money to help with his life, not mine. He is definitely entitled to everything and some more!

Ignore them, they have nooooooooo idea.

thanks feeling better, your DS is entitled to everything he gets, twice a week to hospital is a lot and even if it makes your lives a tiny bit easier then that's got to be good!

Putting it all down on paper does make you realise. I have to cut up my 10 year olds food, help him put toothpaste on his toothbrush, do up buttons and zips, help him carry things, do physio with him, tonnes of emotional support etc etc. No to mention all the visits. I dont think other people realise as he seems to cope so well, but that's only cos we shopped around for velcro shoes that aren't too babyish as he can't tie laces, velcro coat fastenings, belts that can be done with one hand, bags big enough to fit lunch boxes in etc so he doesn't have to carry everything, bikes adapted, it goes on and on.

Yes, we do it without thinking because they're our children and we love them, but it is a strain and we should have the help we're entitled to.

I know he doesn't have a huge disability as things go but he certainly has to face a lot.

Just wish others could be more understanding!

oh and I put off claiming DLA til he was 7!!! I refused to accept he had a disability until I gave up work and decided to was time to apply. I don't think I would have got it until he was 5 anyway, but I reckon I could have claimed a couple of extra years than I did and then I feel guilty that I let that money go when it could have been being saved for a prosthetic for him (£1500+ every 12-18 months).

Unfortunately there are people out there who seem to think that it's all about the money and not about all the help the person needs. One or two of the papers have just had a very nasty article moaning at the money people on income support get, when a lot of people on income support are on it because of a severe disability which makes working difficult or impossible.
Don't feel guilty, your ds is entitled to DLA and that's all that matters.

i felt guilty when i first got the money but decided to change my opinion as the moneys not for me but my son to benefit his life for the better

i get money for looking after him and when im up all night as his convinced its not time to sleep or reciting his numbers etc i then think about everyone else asleep and think i deserve this money i cant work so its a godsend to have this extra money coming in

if people want to comment i would say well your lucky your child doesnt have a disability or you too would be entitled

and i dont tell people not through fear of being judged im past that but because its my sons money really poor thing will have a lot to deal with so deserves to be able to benefit from the money to buy educational toys etc

worry less about what others think or you'll spend the rest of your time worrying just worry about yourselves and dont feel guilty

Don't feel guilty! That's obviously an order

Some people are far too obsessed by the fact that other people may get a bit more money than they do! The sad thing is that people who think like that usually have enough to meet their own needs (needs, not wants) anyway. Don't get sucked in to dealing with other people's greed issues!

And like has been said, you are entitled to it and so you receive it, a simple equation.

thank you all - I do feel better now

I know exactly how you feel
My friend actually helped me fill out the DLA forms for both DS1 and DS2, but she has still made comments about it not being fair that she has to go to work for less money than we get. (DH works a 44hr week but gets a rubbish wage)
We get low rate care for DS1 and middle rate for DS2, I claim carers allowance and we get 2 disability elements added to the tax credits. I have to admit that it does add up to a quite a lot of money but there is no way an employer would let me have all the time off I would need for their various appointments.
But I would give it all up in a heart beat if it meant that my boys didn't have SN anymore, that they didn't have to go through years of therapy and struggle and endless medical appointments.

Dont feel guilty about getting this extra help. We get higher rate which means we have the car and carers and better tax credits. A friend once said it was disgusting that we got 3 times what we should due to ds's autism and she cheats on her books wiping out about 8000 a year from her self employed hubby.

Remember we didn't ask for a child with diabilities, all we ask for is help to make it a bit easier, whether that is extra money, better parking spaces or flexible working hours. Ds broke his leg 5 weeks ago and dp had to give up his job to help care for him. We have a 3 month old and I just couldn't cope.

I think a lot of people are too materialistic and see us getting a few hundred more a month and are basically jealous. The don't see the downside of x amounts of hospital appointments, fighting for adaptations, no proper nights sleep since our beloved dc's were born.

If your friend moans about you again then ask her this. How about a swap so she can see just how hard it is raising a disabled child.

I also try to remember that the money helps us by allowing us room/time/space to help our children.

Many of the things that we do with DS2 are more expensive even to try (like horseriding lessons and holidays and cafes etc). His special food costs more, every trip out with him is more expensive.

We just forget because we see the child not the issues.

I agree with Debs - if anyone bitches ask which one of their children would they choose to have the same issues so that they could "benefit".
I actually had that chat with my sister once.....

I have stopped telling people now. We too recieve higher rate DLA and carers. I agree with the other posts, if you fulfil the critera you are entitled and god knows the DWP make it hard work to fill the critera!!

Don't feel bad, I too gave up work to care for DD2 and have sacrificed a good salary to do so.

I've done this before on here somewhere but thought I'd show it again just to illustrate how we should probably be angry at how little we get and not guilty for what we do.

My DD is severely disabled, we get high rate care and mobility DLA, I get carers allowance, income support and tax credits.
Looking after her is a 24/7 job.
Add up everything I get and work out how many hours I spend looking after her outside of when she's at school and I am getting a grand total of £2 an hour for doing what I do..and thats including the DLA which isn't actually intended as payment for caring.

Work out your own, it's an eye opener and is almost certain to help ayone stop feeling any guilt for what money you get

£2 an hour is WAY below the minimum wage. People who are carers work for almost slave wages. Having been a young carer to a very, very ill parent for much of my young life, I know what sort of emotional and physical rollercoaster it was (let alone that I have an ASD as well). Didn't get any money - children don't get paid at all.

It's very, very wrong indeed, given that if a child was to go into residential care the government would expect to spend £50,000 to £200,000 a year on them. Work out how much of that you get. Unfair? Yup.

It's ridiculous isn't it, and yet people begrudge us this money.
Incidentally, take away the dla (which technically is for DD not me)and my calcs come to £1.34ph, for doing a job a lot of people woldn't do for any money.

thanks everyone, we shouldn't feel bad for what we get, I know really. I would give up everything in the world for my son not to have his problems, as I'm sure all of us here would.

I do always keep things like this to myself amongst my friends but if anything is let slip again I will definitely say something along the lines of 'surely you wouldn't wish your child to be disabled just so you got a bit of financial help?' That will shut them up

You neednt have said about the Tax credits- DLA child (at mr or higher)= surestart grant.

I feel a lot like you- I tget DLA X 2 (2 of my 4 sons are disabled) plus CA and it really does just about keep us above water but I don't like it anyhow. My choices are so reduced though- I can't do my MA or PGCE or work properly due to childcare / appointments etc and that's ahrdly my choice is it?

( oh and because I have 2 disabled kids, but only get one carers rate,a nd they both ned 24 / 7 supervision because of risk factors, I get 18p an hour in term time, dread tot hink in holiday time LOL. That degree was worth it then LOL )

18p an hour. It puts it in perspective, doesn't it

certainly makes me feel valued....

My Mum made a comment a couple of weeks ago about me wasting my degree because I stay at home to look after the kids. So I asked her if she'd look after them for me and take them to all their appointments so that I can go back to work. The answer, of course, was no.