I don't want to be doing this

[Thomcat]

Sorry, would you just allow me a moments self indulgence. I know we all have to do this and I've done it before etc etc, but...

I don't want to be filling out the Disability Allowance forms again, I just don't.

I'd forgotten how depressing they were.

I sat down with all 900 sodding pages (okay slight exaggeration but you know where I'm coming from), with a glass of wine and ended up in tears and coming upstairs to blub to you lot.

The first time I completed the forms she was 3 months old and it didn't hurt as much, but now....

I hated ticking f*ing 'yes' to every bloody thing, hated it.

Yes she has trouble walking, YES. Give more details, why - what more do you want to know, she can't walk okay. Will it be like this for 6 months or longer, yes it bloody will!

uggghhhhhh, [shoulders droop], feel better after that shout... but.....

now for the cry.............

ohhhh and I really did then

......... it's rubbish sometimes. Not often but it is sometimes, and this is sometimes, right now.

Ow it hurts, physically hurts.

I hated ticking that she has a mental illness, and all the other boxes in that column. I wish I could just say she has Down's syndrome and leave the rest to them I hate having to spell it out. It feels so negative. There's no room for the positive on that form, obviously and that's where I like to live in the positive, no need for negativity until you have to fill out bloody forms.

Okay, [shoulders up agin]. feel better, thanks.
Moment of self indulgence over, back to the wine..........

BIG Hugs. So sorry you have to do this.
Just wanted to say I'm sorry you have to.

Horrible isn't it. Try and go into "I am laying it on thick because I have to" mode.

I'm no good at that though- realised that when had my initial assessment with SS recently I gave some stupid answers like "Oh he's no problem during the school term its just holidays". Then discovered that someone with a child who is more able and has far more language than ds1- and an older sibling (age 7) - rather than toddler- is receiving 14 hours direct payments a week. Why on earth? She must have really laid it on with a trowel!
Go and look at her asleep and give her a kiss- makes it all much better ime.

Oh Thomcat, so sorry. You don't need to ask for a moment of 'self-indulgence' (which it isn't anyway). Hugs (((())))

So sorry Thomcat, one practical thing you could do is photo copy them and next time get someone else to just copy it all onto the next form for you. Hugs

Thomcat

Those forms are absolutely soul-destroying aren't they? You spend all your time concentrating on the positive stuff and all the progress that's been made - and then you have to face the torture of the DLA forms. I filled in ds1's forms as honestly as I could but it still didn't seem to be about MY little boy. Instead of the cheeky little terror who has our SALT in fits of laughter with his humour, the form was about a boy who is unable to use a toilet, who still needs speech therapy, and who can't even hold a pencil properly. Hugs xxx

actually photocopying is a good idea. I found the renewal easier as I just copied out the stuff from last time- adjusting it where necessary (depressingly it didn't really need to be adjusted much). Because I was copying stuff out though it meant I ws much more detached iyswim.

Thanks girls. I did photocopy the first form but she was 3 months old and of course she couldn't walk or go to the loo on her own. Now she's 2 and a half and can't walk and go to the toilet on her own becasue she has DS.

You're right Jimjams, you do have to really stress the negative and that's what is so shit. Wish you could say 'no she can't ask to go the loo or walk there on her own, but you should see her smile and the way she keeps her lips pursed until you get to the other side of the room to plant that kiss on her soft little lips'!!!! I know you know where I'm coming from and I you.

And Coppertop, absolutley, I don't recognice the person on the form, purely becasue it's taken awy the positive and left only the negative and underlined it, put it in bold and 36 font!!!!!!

This will get easier I know and I suppose you get hardened and feel nothing when 'laying it on with a trowel; whereas at the moment all I do is say things like 'she's got 150 words, 20 of which she uses unprompted' and 'she doesn't walk but she has a wonderful unique way of getting fro sitting to lying' etc etc, not no she can't walk yes she needs 24-7 care, no she can't communicate.

it's helped to share my feelings with you girls, some who've been there and got the t-shirt and others who can just sympathise.

Someties that's just what's needed aye

Thomcat, sympathy from me.

I've filled these bastard forms in for 5 relatives now but they were all in their 80s, I can't imagine what it must be like for you.

I have no practical advice to better what has already been said. I wish you didn't have to do it

It's grim isn't it? I hate them too TC. I don't understand why conditions such as DS, CP etc have to keep being renewed,it's not as if it will ever go away. I wish we could just signa form every so often saying that things are unchanged. I had to do it afew months ago, and on top of that had to read all ds2's statementing reports as well, which was a bit of a double whammy. It's so hard reading it all in black and white, even though we know the problems isn't it?

Plus side is ds2 was signed off for 5 years, and got higher mobility, and the statementing was completed with no hassle in only 3/4 months, but it's still depressing.

Here is a big hug, quick catch it !

Statmenting is next on the ever growing to do list!
Greeattt!!!!!!!!!!

Oops, was trying to make you feel better not worse! Honestly it was relatively painless, it's just like anything to do with ds when I read it on paper. The bit that got me most was when it said Ds will need considerable help in positioning, moving and transferring around the school, and staff will have to be trained how to do this.

And I am still waiting for his bloody wheelchair. It's doing my head in.

You're STILL waitng for that wheelchair, really, oh hon. How much longer do you know?

oh thomcat im so sorry you have to go through this, the people that make them forms need a slap it sounds like they are a right pain , you have more wine darlin you deserve it lottie sound like a star im really looking forward to meeting her take care luv ,nikki, xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

thomcat i remember everytime i have to fill them out for dp and when they say do you have any coments i feel like answering yes get rid of thses f***g forms
sorry about you feeling down about them i swear thats why they do them to get to us

Who knows TC. First they didn't return calls, then when she did she came out and measured him up, tried one out etc, and she said 6 - 8 weeks. This was in April. I keep ringing up and asking when, they have various stories. First of all they had to wait for his special cushioning to be made, then it was the wheelchair had to be reconditioned, then last time it was the reconditioning was too expensive, so they have ordered a new one. I must call them tomorrow actually, as she didn't call me back last week like she said she would. At least two more weeks I reckon.

Thomcat, big hugs and a stiff drink to you. I can't stand the DLA forms, we've had to renew every year and now they've finally grasped that the DS isn't going away and have awarded it until dd's 8th birthday. Hopefully it will be the same for Lottie. Really, the only thing that gets me through it is telling myself that I am really laying it on for them and I make it a challenge for myself to come up with the most negative things to say.
Last time when dd was 1.5 yrs old her portage worker did it for us. Reading it then really broke my heart: 'K does not use any verbal speech. The only sign she uses is 'duck'.' How pathetic that sounds!! Better to do it myself and know exactly that I am laying it on.
Statementing was nowhere near as bad. The reports really focused on dd's positive sides and the things she can do, and were full of flattery about how 'charming', 'engaging' etc dd is.

Thanks girls

Honey both us and you and your family and friends and everyone who has come into ontact with Lottie know what a special beautiful wonderful little girl she is - sod these people and their silly forms - they are a necessary evil but at the end of the day thoser faceless civil servants don't deserve to hear just how speacial she is do they??

How utterly rideculous that these forms have to be done over and over again though - I think I would probably make a abit of a stand and although probably not help myself just send in a photocopy of last years saying - Lotties Downs has not gone away so nothing has changed!!

sorry a bit late adding to this but know how you feel hon. they are vile things and I personally think they are downright cruel. A friend of a friend has to fill them in for her TERMINALLY ILL child and I often how bloody much harder that must be Hugs from me and just try and make hwer sound worse than she is and think of all that lovely useful money

Do you know I will always remember how my sister had to refill her forms in when she had her transplant as if was a cure and yes shes fine now she has a new heart and lungs FFS! rant over

I was ranting so much I missed out loads of words! I hope you can translate it ok!

Aw Thomcat - I know, I know... all you can do is think how much this money can help her. The questions are so cold though aren't they?
Hugs.

Wraparound hugs.

TC: a couple of years ago I suddenly lost my sight (recovered now!), eyes swollen and painful, and I couldn't see A THING. My mum dove me to A&E, I fumbled my way to the desk.
Receptionist: "what is your injury or problem?"
Me " Something has happened to my eyes...I have lost all my sight"
Receptionist, handing me 4 sheets of A4 "take a seat and fill in this form".

There's no relationship between forms and the lived realities of love and pride, fear and achievement. The forms ae what they are, a burocratic bloody nightmare, and your life with lovely Lottie is something different. Get the bloody forms out of the way, and use the money in your wonderful, full-of-real-life support of your clever,talented, achieveing daughter.

XXXXXXX Blu

Ahh, you girls are so kind.

Blu - bloody hell mate, how scary. Can't believe you were told to fill out forms!!!!!!!!!!!

fio - I have to say i did think about that seperate section of the form and count my blessings. Told my friend about it this morning and said that Iwas fine now etc and told her about that part of the form and how lucky i was that i wasn't filling that part out and then promptly got all teary for the mothers who do have to fill that part in and just felt gutted for them. Your child is terminally ill - do they have trouble getting around? Fill out this form

I know TC its bloody awful isnt it? The lady in question has got a motobilty car aswell and she keeps getting pestered by them for doing too many miles in it. She needs to use it for his chemo its awful really