moaning,

[JazzyJ]

Got so many bloody forms to fill in, just feel gutted coz I know if I don't do them I'll be doing ds and myself a great disservice. But at the same time I feel that DS is not really so bad and we'll muddle through without all the prodding and analysing and biro sucking. Just so depressing being so negative about the little fella, he's not that bad he's hysterically funny and bright and lovely and my little boy and I love him and I don't want to tell all these faceless officials how hard it can be to cope with sometimes.
I don't even discuss half this stuff with the people who really love us and want to help because I feel its so disloyal to DS to talk about him so negatively. Just wanna put my arms around him and tell him its fine if he wants to run about making explosion noises in the nude if he wants to, and yeah go ahead and draw all over the walls with big black marker pens, we'll paper over it some time. I feel totally drained by all this, just wanna be left alone with my lovely babies.

There are a lot of mums who know exactly what you mean Jazzy, me for one. It's crap isn't it?

Yip!
I know tomorrow I'll just get on with it and in a couple of days time I'll just be back in the swing of it with a much more positive attitude but thankyou for listening.

I'm assuming you are talking about DLA forms here???? Ignore me if you aren't.
I'm right there with you on this one. I hate them with a vengance. Everything is sooo negative and darn depressing isn't it.
Hope you are feeling a little brighter today

I know Jazzy but keep going the money really is helpful at the end of it. As to not telling families, I think mine would be suprised as to what is written on the DLA forms

Took me 3 months to fill in my renewal DLA forms. Every time I picked it up I thought "I can't answer this". Trouble is you HAVE to be negative or they will decide you aren't entitled to the money & god knows it makes a difference... I feel guilty because my DS isn't as bad as some other people's, but he isn't a "normal' child & he does make more work & why should he miss out on things that money could buy him just because I'm on a guilt-trip? I never lie on the form- I just tell it as he is- so if that makes him eligible for money then we're having it! At least you don't have to face a medical. The forms are awful but that would be much worse.

Incidentally, I just rang the Tax Credits office to report last years income figures & noticed the form said if we were receiving the higher care component of DLA we would get more tax credits. I hadn't checked his last award & he does get the higher care component. I don't know how much difference it makes, but this might apply to others too, who haven't noticed.

We get higher rate care allowance too and sent our tax renewal form in about a month ago - and I just got a huge wacking payment into my account yesterday!!! I phoned to ask why - and they said it was because I was underpaid last year - they forgot to add the DLA compnent to the tax credit!! Our monthly entitlement has gone up by a fair amount too.
So yes - it's definitely worth making sure it's included on your forms!!

i know its depressing filling in the forms. i recently filled in DLA forms for dd2, actually did them in around 2 hrs, which is pretty good going, but just felt that if someone who didnt know dd2 and how much more we do for her than a 'normal' child, would reconguise her from the forms.

please help as i`m just about to receive my dla form..are they reaaly that hell? do you need help to fill them in or is it poss to go it alone.. i mst admit its tiring enough without extra pressure so any help someone would bo MORE than welcome on this one.. how much do youget? is it monthly, lump sum..what ,how when etc? ANy info woould be great help,

Bambi - The form is split up into sections where you have to say why/how your child needs more help than other children of the same age, eg toileting, going outdoors etc. You don't need help to fill those bits in but it can be depressing because you have to make your child's behaviour/abilities sound as negative as possible. It's a long form too.

For part of the form you need to get a professional to fill in a section where they confirm the diagnosis, problems etc. This could be your GP, HV Paed etc.

We get the middle rate which is just under £40 per week. This is paid into our account at the end of each month.

Why don't you get someone to do them for you/with you, JazzyJ? Do you have special needs health visitors/local voluntary organisation/portage/advice centre in the area? I'm sure workers at any of those places would be happy to help.

Bambi - I can't do links but the site bhas.org.uk have a brilliant guide about DLA and filling in the forms. It made the process a lot easier for me and gave me lots of ideas about what sort of things I should include in each section.

Well hello, just thought I'd let you know that have filled and sent DLA, thankyou for your support, and Coppertop thankyou so much for telling me about the bhas web site, I don't know how anyone is expected to come out the other side of that bloody form without any help.
I actually feel as though it was quite cathartic now (after many tears and rants and gloom), It really made me look at what it is that I have to do differently to other parents and analyse what the differences are about ds, I also feel like I could go for a Phd and wing it! Thanks again Jx

Well done Jazzy - can't have been easy. I'll be interested to hear how you get on. I took the first step today by phoning up and asking for a 'claim pack' for our ds1 who is 6 and has Aspergers. Mixed feelings about going for it (he's not as bad as some, etc) but our psychologist pointed out that if lots of people apply it sends a message to the government about the burden of care there is out here, and that gave me the push I needed to get on it with it.

JazzyJ, rofl about the PhD!!
Someone asked me recently what "my background" is. I was holding forth on ASD, ABA etc and he must have thought that, as well as being a mum, I was some kind of professional, ho ho. I was dumbstruck (for a change) and didn't know how to answer......

I've developed a relationship with one woman at DLA, to the point I have her direct line. She keeps calling me to let me know what's going on, which is above and beyond what I am used to. She called me again for what should be the final time this morning, and I told her I am going to quite miss her now . She said I could always call for a chat, lol.

Well I don't know whether it's the weight and hassel of it all that has been lifted by sending the thing off, but over the last week all the locals have been remarking on how happy and healthy I seem.
Dinosaur, even if you get no cash the experience of getting through it is like no other, it took me half a bottle of rescue remedy to stop shaking with the relief of getting it into a post box.
But really really if you go through with it do use the bhas website, I downloaded a 52 page 'pamphlet' which was just so helpful, and as soon as im sure I don't need it any more I shall hand it over to my special needs health visitor, who was very interested in knowing about it.
I'm expecting nothing but hoping for the best, Jx

I luckily managed to get the lady from Family Fund to fill mine in for me some time ago. Then when I got a reward from FF, I called her to tell her and to thank her. Two weeks later I received a letter from DLA to say thanks for my forms which they had only just received!

I hope for a reply every day but have heard nothing since. I am hoping that if I get something, they will backdate it.

Well done JazzyJ - it is a monumentous task. Is rescue remedy really that good? x

I used it during the birth of dd, but I was so far gone anything was a blessed relief.
It definately takes the edge off panic attacks and anxiety though. I get a bit agrophobic at times and it helps get me through the front door. Don't know how much of it is a placibo effect but I carry it with me where ever I go. Jx

It will be backdated Choccy.