DLA

[pingu]

Hi everyone.

Im sorry ive not been here much lately, but things are grinding me down here, and now ive come to a complete standstill to be honest, i cant even think anymore! Fighting screaming (kids) wont sleep when asleep up again due to sleepwalking/nightmares. Cant hold a conversation oh the list is long and incredibly tiring. My problem is i have spent a week filling in this DLA form and ive read back through it, and it doesnt come close to explaining things we have to do for him. I didnt even get an opportunity to touch on the routine and obsessions (resulting in meltdowns and been late for school etc) as by the time i had got round to it,, i had filled up the box with other stuff i found relevant. Theres so much ! If i had the energy i would write some more on a spare sheet. But my brain is tired and i cant even think of all the stuff i know ive missed out. And if i do think of it i cant write it down right, everything sounds so lame and stupid. Why cant they just send a form asking "has anything changed?" with a "yes" and "no" box.

 

I just want to go to sleep and feel like ive slept. sorry to moan but im deflated. So much going on school/home/moods/###### routines, ive no energy left for trying to fill out a damn form

Has anyone seen a magic wand knocking about?

[jb1964]

Hi Pingu,

 

Sorry you're feeling so down - things can pile up on top and swallow you under - and once you can knock away one or two of them you feel you can breathe.

 

I seem to have had a good month or two of feeling like it and managed (at last) to send off my DLA form (first one I've ever done - and although they give you the month I went over by a week because it just wasn't long enough). I can honestly say when that went into the post box I felt like an enormous cloud was lifting as it had been getting me down and down - staying up til early hours trying to complete it and worrying I'd filled it all in wrong - in the end I did one very very long letter (in fact it was six pages long!!!) outlining a typical day from morning through til nightime and then through the night - giving examples as much as I could about everything and asked them to read that.

 

Hope you have some sunshine in your day soon,

Take care,

 

Jb

[oracle]

Hi Pingu,

 

You get a blank page at the end of this form asking for anything else you think that they shold be aware of? I always use this to write down the things that you have mentioned. I read the DLA form back and then think but I forgot this and that and write it there. Well to be truthful I type it up and attach it. It is more of a snap shot of my son than anything else and that way you can include the things that you feel are important.

 

Hope this helps.

 

Oracle

[BuntyB]

I think we can all relate...

When does your current claim end as they do send it 6 months in advance? Do you need to do it now?

I haven't ever used the phone claim so I don't know if that's any help, but is there anyone else who can fill it in for you, eg CAB?

Alternatively, keeping a diary is useful. You can send a copy.

Lastly, do keep a copy of your claim form. If nothing has changed, copy it out! If you didn't keep a copy, you can always phone and ask them if you can have a copy of your last form.

Hope this helps.

Shona

[JsMum]

what about going throw some of your posts here and seeing what you have wrote in the past about any difficult times. your post about your son having a 4 hour tantrum was very discriptive and so thought about the idea if going throw some of your older posts and seeing what was the difficulties where when you brought them here for help and advice.

 

Just an idea but going back to those hard times where you came here for support might recap your thoughts.

 

JsMum

[cmuir]

Hi

 

I completed the dreaded DLA form about 10 weeks ago. I was one of the lucky ones that got it approved first time. I had help filling out the form by someone who works for Special Needs Information Point. If you want to PM I can run through the kind of things I put. Basically you have to think of the worst day that you've ever had ... in my case that wasn't too difficult as most days can be horrendous! I certainly wasn't told what to write, but after showing this person copies of the various reports, etc she helped me put it down on paper. Things like 'does your child need help through the night?', I said no initially, but was then told that strictly speaking that wasn't true ... I have to stay with my child until he goes to sleep and comfort him, he gets up every night without fail and I have to stay with him until he drops off again, he wakes up screaming at 2.30am demanding a bath I have to deal with that, etc. There's a page near the end whereby I summarised everything. I basically set it out as a typical day by detailing how easy/difficult it is to get my child ready for nursery, en route to nursery he's often threatened to run out in front of a car (and has actually tried to do it!), he has no sense of danger outside or in the house (eg he has to be supervised at all times and cannot be left in the garden on his own, if I'm standing ironing despite warning of the potential danger of getting a burn, he's still touched the hot iron, he'll climb into a roasting hot bath (and can't be left for a second - he can't differentiate between hot and cold well as he has sensory issues!). I'm by no means trying to put words in your mouth, just hope that maybe I've given a few pointers.

 

Best of luck with your application. The form is horrible! Remember and photocopy it once you've completed it.

 

Regards

 

Caroline

[pingu]

Hi there.

Thanks for your advice (as always) I did manage to get the darn thing finished, (posted today) the relief is immense. But i am still fretting that i havent explained things as i could have done. But i have taken it on a 'worst day senario' and put about his meltdowns, the way he takes over the whole house to play with his plug (and if anyone disturbs him during this time he has to start from the begginning again) i have tried to answer everything as honestly as possible so i will let you know how it goes.

I must say though, After the recent hype on the other topic about the journalist who thinks autism is fashinable i do feel as though im been judged as a money grabber in aid of his condition. this has stopped me from talking about it to my friend as i dont want to be thought about in this way. I keep telling myself that if other people had to live with what we do then they would change their opinions. cr*p situation to be in all round really isnt it.

 

Feeling like im been swallowed up by an inconsolable grief at the moment as everything is a struggle, the school have said he will need at least 15 hours TA in year three and gone on to admit that may not be enough but the solution to this is for him to fall flat on his face without any more help before they will consider him for statemneting.

Have you ever felt as though you are trapped in a ball of wool and grabbing the right strand to help you out is impossible?? I do !

 

Hope you are all ok. You godsends you !

Shaz

[jb1964]

Hi Pingu,

 

So glad you finished it and it's gone -although I know exactly what you mean about still thinking whether you've written enough - I kept re-reading mine after it was sent - hopefully it won't be too long before you'll get a reply.

 

I only sent mine off the beginning of the month - I had one little phone call a few days later to ask one question and received my letter yesterday telling me we got it - which I was absolutely gobsmacked as I'd convinced myself we wouldn't.

 

I've also been feeling a bit trapped over the past few months - but I am beginning to clear my head of somethings at the moment.

 

Hope your's go as smoothly and that you'll soon start clearing yours.

 

Take care,

Jb

[Flora]

Shaz,

 

doing the application for DLA is exhausting and a very emotional process.

 

In the next week or so when you feel a bit better you might strart to think of things you wish you'd said in the application.

 

If so, you can send in more information as it occurs to you. After a couple of weeks you will have an acknowledgement letter and your son will be given a case number. All further correspondence relating to his case will be put with his application.

 

Lauren

[sam1414]

i spent a month fillin in those forms i felt the same way when i sent them offi no i did not put enough in the forms but time and bein exhausted was against me.i hope the person who reads the forms has experinced as first hand or they will not understand

[col]

I just got a phonecall this morning . I was a week late sending it back as it was with the paed. I was such a rush to feel in the last bits and send it off, didn't think that i should of gone back to CDC as the paed forgot to sign it