Ok I Have Actuly Done It

[fallenangel]

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I ave phoned well I got Tony to phone DLA for a form so its officaly on its way and I feel sick allready just thinking about filling it in and the pompus gits I am going to have to deal with at DLA it makes your feel like a criminal just doing the form arrrrrrrrrr.

But in the last week i have droped 3 cups and a bowl of cerail trying to get them to the table lucky the hot tea just missed me andthen today I fell against the window and smashed the antige oil lamp i have had 10 years since my mum died and left it me and all i was doing was trying to put my foot in a slip on show god I hate not being abell to do stuff

 

[Lal]

Hi, I don't actually know anything about your circumstances but, having gone through filling in one of these forms I know exactly where you are coming from. My care manager actually completed mine for me, they are actually sent on courses to learn how to complete these forms, I don't know if you have anybody like that who can help? The one thing I remember her saying is to imagine you are having your WORST day ever and complete the form accordingly. Good Luck :luck:

 

[blissed4ever]

The CAB can help you with these forms or refer you to someone who can. They are horrendous - I was advised to apply when I first had cancer but decided that I didn't meet the criteria so didn't bother. I think they are designed to put people off applying.

Good luck with the form, and take it easy - hot tea and dogs isn't a good combination unlike hot dogs and tea! lol!

 

[fallenangel]

lucky the teas not hit me or the dogs but the dogs seam to have the sence to stay well away if i am trying to carry anything think they ahve more sence than me lol. but I have been realy strugleing for months now and after breaking my mums lamp I have had to say ok going to have to do the dla crap. I dont have a care maniger or any help. As any of my mates will tell you I dont do help from anyone very well so officel types and strangers have no chance with me if i or hubby cannot do it then its not getting done. i am just a stuborn old bag lol looks like it will ahve to be CAB though as tony phoned socila services to see if they new were i could get form help from and they said oh yes phone this number he did and it was social security. I am sure there realy going to help you with wording and what to put tipical of or soclie services and maid me even more determend to have nowt to do with them

 

[Lal]

Sorry to hear that you feel like that, I've been fortunate with my care manager who, after almost five years, is more like a family friend. I can understand where you are coming from though, I've met some real do-gooding busybodies in my time.... The forms are designed to put you off applying but please try not to be deterred, it annoys me that it is always people with a genuine problem who feel intimidated, it certainly doesn't seem to put the 'scammers' off. Good luck with the forms :luck: :luck:

 

[Esty]

Wendy, you can fill it in online so you don't need an actual 'form'. If you go to the CAB they can do it online for you. You also don't have to fill it in all in one go - you can stop and come back to it, from what I remember.

What Lal says is right, and the DLA people also tell you this - imagine your worst day and describe that. It is Sod's Law that you will be having a good day when you fill it in and will feel like a cheat ( I did when I filled it in for my son with Asperger's ), but then when he had a VERY autistic day the next day, I knew I'd done the right thing. You are only getting what you are entitled to, and what you have paid into over the years - do not feel bad about it. :luck:

 

[fallenangel]

I know theres lots much healthyer than me that get it and i know i should have clamed years ago for me aswell as my oldest girl with asburgers and even alexs with crohns but didnt we just got on with things. I buy stuff for me now i could probbly get from the drs or comunitty nures but dont. I feel the minet they start helping you they start taking over your life and have the view that cos your back legs or hands dont work very well your brain doesnt eather. I have seen it happen.

The forms are on there way now and the woman said its counted from when we maid the call so today so might aswell use the form dont realy like filling things in on line till I can get to CAB i am keeping my diery again and off to see nice DR in the morning for afew new niggles that have croped up since he changed my meds its all more for the list i suppose

 

[Esty]

I can honestly say that since we filled in the form and got approved I have heard nothing from anyone, so no interfering or taking over :thumbsup:

The thing is, as you cope, you don't realise how different and more difficult your life has become from someone who has no physical problems. We took a step back and realised that we were running an extra car because my son had to go to school in a different town and at odd times (he only goes in for two hours a day.) I was the only one who seemed to have the 'knack' with him - as you know, Wendy, being the main carer for someone with Asperger's is like being a flipping horse whisperer! I'd had to give up my job to be with him on the days he couldn't get in, and to take him when he could, and to take him to appointments. We were involved with school agencies, CAMHS, psychologists etc who all had to be dealt with (and sometimes fought with!) He couldn't keep on top of keeping himself clean so I have to be around for that. He has to have routines that are kept to, won't go out on his own, has to not be exposed to things that he's hypersensitive to (crowds, noise, certain smells etc), will only eat certain foods - everything has to be 'managed' to a much greater extent than with regular kids. And, yes, when these things are managed, life goes quite smoothly sometimes, and sometimes you wouldn't even know he had AS - but if we weren't doing all this, things would be very different.

Chin up )

 

[Lal]

I can honestly say that since we filled in the form and got approved I have heard nothing from anyone, so no interfering or taking over :thumbsup: The thing is, as you cope, you don't realise how different and more difficult your life has become from someone who has no physical problems. We took a step back and realised that we were running an extra car because my son had to go to school in a different town and at odd times (he only goes in for two hours a day.) I was the only one who seemed to have the 'knack' with him - as you know, Wendy, being the main carer for someone with Asperger's is like being a flipping horse whisperer! I'd had to give up my job to be with him on the days he couldn't get in, and to take him when he could, and to take him to appointments. We were involved with school agencies, CAMHS, psychologists etc who all had to be dealt with (and sometimes fought with!) He couldn't keep on top of keeping himself clean so I have to be around for that. He has to have routines that are kept to, won't go out on his own, has to not be exposed to things that he's hypersensitive to (crowds, noise, certain smells etc), will only eat certain foods - everything has to be 'managed' to a much greater extent than with regular kids. And, yes, when these things are managed, life goes quite smoothly sometimes, and sometimes you wouldn't even know he had AS - but if we weren't doing all this, things would be very different.

Chin up )

I wholeheartedly agree with all the above. My son also has Aspergers, ADHD, Tourettes etc, he is tutored at home now (couldn't cope within a mainstream school environment) but attends two different group tuition sessions. Routine becomes everything and as the main carer your life is often consumed by maintaining stability. The difference DLA has made to me is that I now find it easier to afford to get somebody to step in and do the little things that I am unable to do on my own (things like home decorating are a nightmare because of the upheaval). Keep at it and don't be disheartened.

 

[fallenangel]

my oldest girl wasnt diagnosed till she was nearly 16 the eductional sycolagetd said she had to smile more. but with her being my first you soon pick up as theyare with you that. if you say put clean tights on every day and forget to say and take them off at night that buy friday there will be 5 pairs of tights on her. We are lucky sams now 25 and has her own flat and allthough I keep daily tabes on her she copes well with most things. she even has a boyfrend and they have been together for 4 years now and hes great with her aswell But I jst thought ok I am her mum and she my dauter and i like the comparison to a hores wispera you know before thay do there going togo off on one and you know whats needed to sort a situation out quickly and its never the most logical thing. so your with them 24 7 espcily when she didnt go toschool for the last 18 months after smashing 2 car windscreans you know your not going to get her there. Now shes in her wn place things seam so quiet but i would nevr want to go through her teanage years again asburgers and hormons dont mixs.

TOny recons one day over the weekend hes going to take my gadgets away i use to do things like my grabber and bars and stuff i have in the bedroom and bathroom to see what i can phiscaly do "normily" he recons i will be shocked and i am doing an aches and pains diary. If i was a houres I would have been shot buy now lol I suppose all can do s get the bloody forms done and see what happens. I think its more the thought of having to appela but we will deal with that when it happens.

there are some up sides though just been put back on inhalers with a big bubble to take it with so I might have to buy a new handbag to fit it in lol I can allways see an up side lol

 

[Lal]

Handbag therapy is always good :thumbsup:

 

[marielou]

Come on mate, grit your teeth and fill this form in, it will help to make such a difference for you and Tony. Get writing and day dream about us all being in Scotland this summer....except this year its not gonna rain all the time (w00t) By the way a new handbag is always a good idea :-

Just to cheer you both up while your form filling look what I found

 

[fallenangel]

If you ahd removed scary me from the pic it might have cherred me up lol thats a couple of years back with the old tent and van i miss the tenet and van :wacko:

 

[marielou]

If you ahd removed scary me from the pic it might have cherred me up lol thats a couple of years back with the old tent and van i miss the tenet and van :wacko:

Didnt get any pics of your new tent last year, will have to make up for it this year :-

 

[Doobryfirkin]

oh my god who is the fat bloke in the blue t-shirt ive lost a bit of weight since that photo from a size 44 inch to a 36 inch waist

Tony

 

[~Sarah~]

Wendy - don't let them get you down. I am sure they make the forms so difficult to fill in that people give up. :angry:

I few months ago I was listening to Jeremy Vine on Radio 2, and they were discussing these sorts of forms and how difficult they are to fill in. He started to fill one in during the radio programme, and said how awful they were. Pages and pages of questions, and also very confusing as they didn't word them very well.

Stick with it and get what you are entitled to have. I do hope it makes life a bit better for you. :thumbsup:

 

[fallenangel]

The forms here and I am waiting for CAB to get back to me had a look and theres no way I would be abell to do theses forms on my own