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I feel like a fraud..

(24 Posts)
FagAshLill Thu 01-Sep-11 20:12:43

DS has been awared HRC. On the form I did not exaggrate anything, if anything I played them down. He has ADHD (diagnosed) and other traits on the austisic spectrum but not yet diagnosed.

I was expecting at the most LRC which i would have more than happy with, but this seems like too much.

They said it was because he needs to be supervised for a period of time before he sleeps as not to injure himself or others, which is true but I've just thought of it as an inconvinience...

I dont know what to do. I'm putting it into a savings account for him and for replacement stuff that he destroys until I know for sure what to do.

I called my mum about this and that I wanted to call them back and tell them it's too much, and she said she felt the same when my father was awarded hrc due to his various illnesses. She called them up and told them it was too much and then said it was the biggest mistake they ever did as she is now in debt because of funeral bills and whatever else they did before he died. She told me to stop being silly, swallow my pride and take it and put it into a savings account.

Is she right and and I being stupid? or am I right that it should be taken back and a lower award given instead?

I know they dont make these decisions lightly, and that he must be bad for him to be awarded this.

There are so many things I could do with this extra money, not just for him but for us as a family and will go a long way into making this hovel into a safer home for him but I feel so guilty for doing this.

It's more of a moral dilema I guess. Did anyone else feel the same? what did you do?

shazian Thu 01-Sep-11 20:30:16

Well done you for getting HRC you must deserve and be entitled to it. Use it to make things easier for your DS and the family. Perhaps you dont realise how much more you do for your ds in comparison to a NT child, because he's your son, you obviously adore him and just do things naturally without thinking about it. As you know lots of other parents have a fight to get the right DLA awarded so whoever made the decision doesnt do it lightly. I'd say dont phone them the decision is made and you may not get same awarded next time, save for the future for your ds or use for things that will make things easier at home.

StarlightMcKenzie Thu 01-Sep-11 20:55:38

Fag, the same thing happened to me. At the time I didn't know how to spend it because I didn't know how many things there were out there that would be beneficial that I could only access with additional money. I hadn't thought of them because the dx was new and I was just used to dealing with it. Now I believe that my DLA doesn't go anywhere near covering what I feel is essential for ds to have access to.

I think also, one of the reasons I was shocked with getting HRC was because I then had to come to terms with 'blimey, so he really IS bad then!' and that was hard. Much easier to believe they made a mistake and awarded me far too much money.

StarlightMcKenzie Thu 01-Sep-11 20:57:08

And like you, when I filled in the form it was for the first time. In fact I didn't even do it myself, someone from the council was sent around to do it and I was embrassed to give the extent of ds' difficulties to a stranger in case they judged, so I thought I'd be lucky to get LRC.

colditz Thu 01-Sep-11 21:16:03

Ds1 was awarded HRC and LRM for the same diagnosis (ADHD and Autism) and I think it's because as a combination, it makes for the most unpredictable child you could possibly imagine.

take it. Like you, I use it to pay for the things he destroys (I cleared out 3 binbags of broken things from his bedroom yesterday), and for taxis when his behavior makes us late (at least twice a week) or when his brother is exhausted through being woken up in the middle of the night to be drilled on his times tables are asked to sneak downstairsand play the nintendo ds's. I pay for endless paper, so he can indulge his origami penguin obsession, I pay for cotton sheets and duvet covers because he can FEEL poly cotton, further more they have to be washed at least 5 times before he will consider them on his bed ..... He's eight yearsold, I should be able to go out of earshot, but I can't, because occasionally I find him trying to beat his brother with no holds barred, and he DOESN'T stop to a voice command, I have to DRAG him away.

I paid for a short caravan holiday, because his brother SHOULD see the beach, he shares a room with Ds1 and that in itself earns him a holiday in a THREE bedroom caravan where he gets to sleep on his own for once (he usually resorts to my bed- he's five, and doing it for peace, not comfort).

I bought a trampoline and a Pilates ball, to do Ds1's occupational therapy exercises on, and also to calm him during stressouts.

I bought a lock for my bedroom door, one with a key, so I have somewhere to hide my precious things (what I have left)

I replace plates, cups, bowls, lost cutlery, lost shoes, lost uniform, lost drinks bottles, ripped books, broken DVDs, sofas that have had so many things spilled on them that they are made of fruity yeasty cheese .... I replace sheets, towels duvet covers and clothes and curtains that he has taken the (still not bloody found!) stashed pair of nail scissors to.

I replaced the mattress because he wouldn't tolerate a plastic sheet and still wet the bed (thankfully dry now)

These things, they are little annoyances day after day for us, but you have to remember that we live in almost intolerable conditions. Weare living with children who either don't grow up, don't grow out of things fast, do destructive things more often than average, and sometimes regress. Ds1 now chews everything. He didn't used to! We aren't dealing with the short term 2 years of destructiveness between 18 months and 3.5 years of age (which is how long Ds2 was destructive for, and I am not proud of saying that during those two years, when they were both at it, I cried daily). Our bombsite surroundings may never resolve. there is light at the end of the tunnel, but there is a 50% chance it's a bonfire of all our prized possessions!

And ohhh the time, the time it takes to get anything done.

Ds1 is 8, Ds2 is 5. In the morning, I will say "ds2, get dressed, then sit and eat your breakfast. Ds1. Put your pants on. Pants. Put them on. Get another pair then. Now put THOSE on. Ds1. DS1!!!! PANTS!!!! now trousers. No, not those trousers, they aren't school trousers. Put the ones on that I gave you. These trousers. Put them on. No, sit down on the floor first or you'll fall- yes, see? You fell. Sit down. Put your trousers on. DS1! Put the lego down. TROUSERS!!!"

It actually is not normal to spend each and every morning going through each and every item of clothing 15 times. And we forget, because to us, it is normal. In that it has happened ever day for 6 years.

Triggles Thu 01-Sep-11 21:34:53

well, colditz, you've certainly described our household to a T. Especially the pants and trousers thing. hmm

StarlightMcKenzie Thu 01-Sep-11 21:41:02

DD is 2, and DS (ASD) 5

I often hear myself saying 'Right 1 more minute in the playground' Cue DD saying 'nooooooo' and DS having meltdown, screaming running, possibly hitting a passing child.

I say to DD 'Stop that noise and go and wait by the gate for me whilst I deal with DS' DD says 'Okay mummy!'

Follows 5 minute physical struggle with ds. DS has to be made to hold my hand along the street all the way home. DD toddles along behind us, crossing roads alone on my instruction.

unpa1dcar3r Fri 02-Sep-11 08:19:51

Morning Fagash
They don't award hrc for nowt so if your child has been awarded it it is because they reckon he needs it. Do not under ay circs ring them to say it's too high!
I have 2 boys both SLD and they have in the past lowered eldests to low rate mjob which took me a helluva battle (8 months, 2 appeals and a tribunal) to get put back up.
They were talking from their arses of course as he still qualified for HRC being 'so severely disabled mentally that he needs constant help and supervision' (social security act) and therefore qualifies for HRM but it took a lot to sort out and I wouldn't wish this on anyone so use the money how you see fit to help your son. Whether it's doing up your house for him, going on holiday with the family or paying for all the extra things he needs. Or save it for such a day.

unpa1dcar3r Fri 02-Sep-11 08:24:05

Ds1 is 8, Ds2 is 5. In the morning, I will say "ds2, get dressed, then sit and eat your breakfast. Ds1. Put your pants on. Pants. Put them on. Get another pair then. Now put THOSE on. Ds1. DS1!!!! PANTS!!!! now trousers. No, not those trousers, they aren't school trousers. Put the ones on that I gave you. These trousers. Put them on. No, sit down on the floor first or you'll fall- yes, see? You fell. Sit down. Put your trousers on. DS1! Put the lego down. TROUSERS!!!"

Oh how I empathise Colditz. Except here its in duplicate haha; boys aged 13 n 14 and bigger/stronger than me! Your lucid description is spot on my love!

auntevil Fri 02-Sep-11 08:34:57

Lill - You've grown along with your DS - so caring for him has become the norm. You have your routines and have made all the additional activities that you have to do the norm.
Now imagine that instead of 'wife swap' it's 'child swap' . Your DS goes to a family with a DS (NT) of an equivalent age. Do you think that they would not notice all the extra work? Do you not think you would notice all the extra time and how less stressed you would feel? That's what the award is for - all the things that you don't even realise that you do and the ones that you remember!
The cash is for using to benefit the whole family. Save some if you think that there may be costs ahead - but don't forget to spend some to make life easier now. You can't go back in time and make childhood easier for them when they've grown up!
If you thought you might get LR, or MR, why not save the difference then if you still have the guilty feeling you wouldn't be spending more than you thought you would get and can accrue a nice healthy rainy day fund for future costs.
grin at the pants and trousers thing. I have visions of us all at the same time echoing 'TROUSERS - NOW' at the same time in the morning grin

FagAshLill Fri 02-Sep-11 09:09:31

Colditz I could have written that post word for word.

FagAshLill Fri 02-Sep-11 09:26:59

I have a DD too who is NRT so I know DS isnt right. She misses out on so much because of him. Things are a lot harder since EXP left so I'm doing this all on my own. As a result I am exhausted and physically ache by the time he finally goes to sleep.

I have slept on it and made a decision. The way things are there is no way I can afford to hold down a part time job without this money and I can not physically or mentally do a full time job and care for him. I am left with one option. I will apply for Carers, income support and go back to college to learn a trade I can do part time on a self employed basis so i am still an example to my DD as a working mother (and for my own sanity) and still have the flexability to deal with DS and his condition.

The trousers/pants/socks/toys thing is so familiar and I thought this was just normal! Obviously not.

There is so much I can do with this money now, DD is getting her room done out as DS destroyed so much of it and I saved up for months to replace the carpet DS set fire to, she does not have anything, not even a wardrobe that is stable. I am determined to give both children as much as I can with this new situation I have found myself in...firstly by giving DD a proper girly bedroom.

Thank you all of you. I feel better and a bit more optimistic about things now. Who knows...maybe one day, I'll be able to afford to learn to drive!

Becaroooo Fri 02-Sep-11 13:36:27

You would not have been awarded HRC if you did not need it.

I hope it helps you and your ds x

AlfalfaMum Fri 02-Sep-11 17:39:53

We get something called DCA over here instead; I felt so awfully guilty applying for it, I took nearly a year and half to even try. DH works full time, I part time, we aren't wealthy but feel so fortunate to have what we do (mainly, each other and our gorgeous girls) that it felt wrong to claim any benefits. We had to realise that this was DD2's right, and not about us really.

I can relate to the pants and trousers too. I do a little list with both words and pictures for getting dressed, then leave her to it. An SLT suggested it to me, and it really helps. Without it, she will sit in a daze wearing a pair of socks and nothing else confused

shazian Fri 02-Sep-11 18:10:44

Hi Fag, if you are serious about learning to drive and are on benefits perhaps Family Fund would help out. Application is really straightforward and usually quite quick. They will help out with driving lessons, holidays, or anything that might make things easier when you have a disabled child. Think you can get them online.

magso Fri 02-Sep-11 20:02:16

I felt a fraud when ds was awarded HRC LRM. He was 9 - I had not thought it was meant for whirlwinds like ds who need highly active second by second care but not medical care. As always expensive equipment was needed for his OT and -- I could buy it!! And gradually it made life easier as it is meant to!! Then I felt sad for the years of struggle when we could not buy needed equipment and therapy and advice.

mariamagdalena Fri 02-Sep-11 22:12:29

The DLA decision makers are mostly nice ladies working to a strictly worded book of guidance. They really can only award if the stuff on your form obviously matches up with what's in their guidance. Which is why lots of people don't get HRC... its underawarded because it's so hard to fill in the form with exactly the info the decision makers need. Youd be mad to decline money he's entitled to just because you filled in a form well and accurately.

Jodianna Sat 03-Sep-11 00:02:35

Trust me, you'll need it! Seriously, the guidelines are pretty harsh, it's to meet the extra costs that a person with a disabilities may incur.

Starlight, used to have the same problem with Dd2, we started giving her a fifteen minute countdown, eg. We will be leaving in 15 minutes, we will be leaving in ten minutes, we will be leaving in five minutes, four minutes, three minutes, etc. When she could vocalise more than she could at the time, she said that the one minute warning always came as a shock and it frightened her because she'd be happy playing and then we took it away. We still use the countdown for other things, they all find it reassuring.
Just a thought.

coff33pot Sun 04-Sep-11 02:02:57

I am just filling in the forms (ooohhh the forrrrms) so long way off but want to say take it and use it. Dont feel guilty. You deserve it and your kids deserve it. And good luck on the college front smile

Now tomorrow morning DS is going to be wondering why I am giggling when I am telling him to put his pants on about twenty times. I just know in my head I am going to imagine about another group of mothers echoing the same sentence in my ears grin I know its not good but oh boy its good to know you are not alone smile

FagAshLill Sun 04-Sep-11 08:56:14

Good luck with the forms. Coff33pot. It takes a while before you hear anything from them, I think mine took around 16 weeks so be prepared for a long wait.

coff33pot Sun 04-Sep-11 21:33:13

Fag.........I dont just want an answer when I send this, I want a flaming gold certificate perserverance award for filling it in! grin

My DD gets them at her school so I want one! grin

FagAshLill Mon 05-Sep-11 08:01:19

grin it took me 2 days to do my part and almost 2 weeks to get it back from the school.

CherryMonster Mon 05-Sep-11 13:07:37

i get MRC and LRM for ds2 who has dyspraxia, also currently waiting on DLA award for dd1 who has aspergers and possible other ASD traits, i would be thrilled to get HRC for her as she is so so much more needy and involving than ds2. his needs seem to be more academic and help with fiddly stuff, hers are getting her to do anything, meltdowns, moving, attention, stopping her attacking anything that moves etc. she has been excluded from school 6 times for violence when she melts down, and has just started at a special school for children with behavioural issues. she is 6 and has just started her 3rd year at school. she was excluded 3 times in reception class, once before she had even turned 5, and 3 times in year 1. ds2 has never been excluded, he is 10.

coff33pot Mon 05-Sep-11 13:18:34

I am in the same boat as you with DS Cherry. Mine is being assessed for AS and he was excluded from school 3 times at 5! all due to meltdown rage and misunderstanding on how to handle him (school now listen lol) bit it has got better now they know what to do.

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