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why do i feel so guilty over DLA claim?!

14 replies

Emily34austin · 17/03/2015 17:55

I am in a state of shock I was awarded Mrc and lrm . I thought I wouldn't be considered and lrc for DD if anything. I was very honest in my form that she is fully mobile but at times suffers with anxiety in public and needs reassurance.
In terms of care needs DD14 is capable of all her care needs however needs prompting is very disorganised and no time keeping also loses tons of her belongings(ADHD).
Now I'm freaking out I feel its to much and feel awful. I'm considering asking for lrc did anyone else feel this way after award?!

OP posts:
PolterGoose · 17/03/2015 18:38

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Emily34austin · 17/03/2015 18:46

Thats the thing. I know compared to other teenagers there is a gap but i'm so used to her I feel bloody awful. I thought mobility was just as it sounds as opposed to anxiety .She is at MS school but its very difficult. I think she will become independent might just take a while longer with lots of dramas thrown in.
I keep wondering whether to ask for lrc I just was not expecting this.I was very honest on form so assumed i'd be denied maybe I'm used to it .

OP posts:
Handywoman · 17/03/2015 19:07

I received DLA award letter yesterday, lrc & lrm.

It is a very weird feeling. A bit surreal. But I think our lives are normal to us - but not really normal - the devil is in the detail. I've been told by friends to appeal for mrc. But again, I already feel lucky to have a benefit linked to dd2's ASD. So I know I won't.

Strange

Emily34austin · 17/03/2015 19:14

Its very odd . DD can independently get ready and go out (just needs tons of pestering ) sometimes she's out and fine other times she comes home after 5 minutes or is on the phone with xyz as a drama. I believe she will improve we are just always playing catch up.
Its such a weird feeling i feel so guilty !

OP posts:
PolterGoose · 17/03/2015 19:19

This reply has been deleted

Message withdrawn at poster's request.

Sirzy · 17/03/2015 20:53

I know the feeling. It is only about 3 weeks since DS got mrc and it is a very bizzare feeling.

Emily34austin · 17/03/2015 21:59

Very odd feeling. Didn't expect anything but felt I had nothing to lose .
Now I feel its to much .

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Indantherene · 17/03/2015 23:00

I used to feel like that over DS's DLA. You catch yourself thinking they aren't THAT bad; then you see them up against an NT friend and you realise that actually they are. Mine is now 25 and it is obvious to anyone who meets him that he isn't "normal". You just get so used to all the extra things you have to do that you don't think about it. Plus all the extra expense. I'll bet if you sat and added up all the extras that you wouldn't have to pay for if she was NT you wouldn't feel so guilty.

Do NOT ask for lrc. (She will get even more expensive as she gets older) Grin

Emily34austin · 17/03/2015 23:05

DD masks quite well with friends etc but is often seen as "very rude" which has caused no end of dramas over the years (banned from friends houses etc for showing utter disgust at their lovingly prepared meal or saying something Shock ) .

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2boysnamedR · 18/03/2015 00:50

It's never nice seeing in writing confirmation of your child's hardships.

My ds gets lrm sometimes he doesn't want to walk. Sometimes his legs hurt so much that he can't join in with normal life. His Lrm helps towards his weekly gymnastics and dance groups. In turn he gets stronger but more importantly he engages in life. Never with the skill of a nt child BUT he is included. He learns that dispite his issues he still has to engage and interact with life.

Think of it like that. It's money to help them to grow up into rounded people that (please god) can interact with adulthood if that's within means.

I never feel bad about our care element. I live at hospital. I spend every waking moment trying to get him a better education. I spend a furtune washing food covered clothes and wee soaked bedding!

Don't even get me started on the effort needed to get food into him :0/

senvet · 18/03/2015 02:29

Emily the question that they pose themselves is 'what can dc do on a bad day' and they mean without aids such as loads of prompting that most kids dc's age don't need.

I have ms and on a good day I am totally self caring for washing dressing etc.

On a bad day I do not have the energy, or my limbs just won't co-operate. If I could predict exactly when the bad days would be, then there would be an argument to reduce the amount, but I can't.

Your dc does need help with washing and dressing - what would she be like if you did nothing to help for a month? How clean and hygienic would she be?

She does need help with mobility - what would happen if you weren't there to encourage her when she becomes anxious? It sounds like she could be in danger without your help and encouragement.

You don't pay taxes by choice, and the flip side is that you are entitled to the help.

Don't feel guilt - the under funding of people with needs is not your fault - the MPs with their double digit pay rises, tax breaks for rich people, and tax avoidance and evasion should be playing their part before you start trying to reduce what you are entitled to.

Just think of all the ways you will be able to help her now that were not available before. For a start you will have a fund to replace the belongiings that keep getting lost....

JJXM · 18/03/2015 08:20

Don't feel any guilt - you are so used to living with your DD that you get into a pattern of doing things - it's only when you compare them to an NT child that you see how stark the difference is - your every day life is not the same as their life. We are so used to getting up with DS in the night that DH and I have a system!

We've just been awarded HRC and LRM and I feel no guilt at all - My son's ASD means only one of us can work - even £400 in DLA isn't going to cancel out one full time income. Also it enables us to do stuff with DS - even going out somewhere nice can mean we only do half of the activity because DS becomes anxious (and DLA usually gets in a free carer).

I'm not sure if you are claiming tax credits but if you are there is a top up if you get DLA.

bitbap18 · 18/03/2015 10:30

Totally agree with polter and senvet. Do not feel guilty at all. They do not give these away at all. It just becomes normal to us, but when you look at whole picture you realise how far from NT they are.

It's not just for that particular need, but the extra things that might be needed, extra costs etc. don't forget that these things open doors to other things that you can't get without it (even things like reduced cinema tickets through CEA card!) but also if you don't work you may be able to get carers allowance, extra tax credits or an entitlement to it where you didn't before is possible. Plenty of people take take take and never give an ounce back, I'm sure you have over your time and it's been deemed that she deserves it.

MedusaIsHavingaBadHairday · 18/03/2015 21:48

I gave up feeling guilty around the time it dawned on me that I will be looking after Ds1 for life.. even if he has supported living some day.
There is so much which will not be possible for him.. unlikely to have a job, or a family or drive, or backpack round the world (Ok I haven't done that either!) never have the opportunities that most of us take for granted...

That if his DLA (and I would hope, PIP when he transfers) makes his life and ours a bit better.. GOOD!

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