I honestly thought this time wouldn't be so bad but i was wrong

Ds has made so many improvements that although I knew he still needs a lot more supervision etc than others his age i though a lot of what i wrote before would no longer apply. How wrong I was

Nearly everything i wrote last time (and it was loads) I have written again plus he now has problems with waking in the night so needs supervision then as well. Plus he has started taking meds which needs to be included.

Its daft realy as I know he has these needs and deal with them daily. I also can see that the gap between him and his peers has widened over the last 2 years. Its so bloody disheartening writing it all dwon though. He has been doing really well and so far the Strattera seems to be helping him too but on paper you can't see though changes at all

I've just got to the mental health section which for him is always the largest and I already knew I was going to have to add stuff in here (such as deliberate and calculated self harm). Decided I need a break fuck off big glass of wine before i tackle the rest <<sigh>>

I'm feeling ridiculously tearful now

((Dustystar)). Those forms are awful. I've only hadf to do one and that was hard enough. When you've written them write down all the positive things your son does, what he likes, what he's achieved and look at that.

<passes dusty a slice of cake and a glass of wine>

It's horrible

Just sending best wishes your way, the forms are horrible.

KNow how oyu feel mate, the forms make our children sound horrendous when relity they are lovely and like oyu say you just deal with stuff every day without really thinking about it BUT seeing it on paper is awful.

have a big glass of wine stress busting juice!! I think i will join you!

They're horrible forms. Ds1 and ds2 have both had a renewal due within about 12mths of each other.

<shudders at the memory>

Good luck, Dusty. xx

Just poured myself a big glass of wine - lol at stress busting juice bonkerz

Almost done now - i just need to fill out the new bits using the Cerebra guide as my BHAS guide is out of date. My right hand is killing me and I have a head ache At least its nearly done

Poor you having 2 to do so close together CT<<shudder>>

I am doing DD's at the moment. Very depressing. Especially when I read the bit portage had written and she'd said 'substantial learning disabilities'. Which I kind of knew, but didn't like to see in black and white.

It's very hard but I found the best way to just imagine I was writing about another child with autism not mine so that I could distance myself from it. I was lucky and had a social worker by my side who helped me to darken every sentence and who would not let me put anything positive - but she did it in a very nice way.

Its so awful, last time mine took 3 hours with the social worker and my mum has DS afterwards and I went for a very long lunch. I think wine is definitely the answer for those.

I have just received mine as well. I gotta get on with it.

I thought I was ok with the first one I did I was fine writing out all the stuff. Then I went to get help filling it out (from a disability advice centre) and I was welling up when I had to describe my Ds and could see the genuine sympathy in her eyes.

Am relieved to hear am not the only one filling the form in and getting upset. It's not just writing about the things DD can't do. It's also the idea that we have to go through this humiliating and depressing process every time and for such a small amount of money--which we might not even get depending on the whim of the beaurocrat in charge. I think paeds should be able to issue some kind of a form which would be an automatic passport of entitlement to benefit.

That is SUCH a good idea (Arabica)

You should do one of those e-petitions on the Downing Street website.

That would be so much better than the current cr@ppy system!

I agree, Arabica.

I cried and cried filling out DD1's form.

It took me days because I just couldn't do it all at the once.

It was just too negative about such a beautiful little girl.

And isn't it the case that if you want to apply for bits of sn equipment, respite care, etc, you have to fill out a different (and equally stressful) form each time? Why can't there be one central form?

There's supposed to be this CAF form for all services...but they all still use their own forms as well!

Hello. I think I'm lucky in that when I do my dd's forms I can remove myself emotionally and see it for what it is - a means of getting resources for your child. All these things are like a game, which I play to get the things my daughter needs to help her live a more fulfilled life. I hope this doesn't sound glib but it really does help to see it that way.

Just finished DD's form. Phew! Feels like we are pleading to be taken seriously--humiliating.

Oh gawd, we received DS's DLA forms a few days ago. It's massive !!!

My friend goes through all of this for her DS (he is autistic) and has offered (almost insisted) that she helps me fill it in. I am most grateful and will supply the wine .

I am avoiding it tho. Why do I feel like I am trying to blag some money that I am not really entitled to ?

For example...

We cannot walk into town (despite living in town more or less) because DS hates it and will just sit down/crawl/scream. When we get to town he runs away (and is bloody fast !!), runs into shops, out of shops, knocks things off shelves so I will take him out...

However, last Sat I had to go and get a present for a party that a-noon. He begged not to go in the pushchair and I was feeling brave so I let him ride/push his bike.

He behaved beatifully, didn't run away, held hands when asked, helped choose the present, no meltdowns when told he couldn't have random stuff...!!!

So what would I put on the DLA forms ?

Most of the time I cannot go out without the pushchair (and he's far too big for it). I am looking for a bigger one , can't believe it .

Do you 'pretend' that they don't have good days ?

TM - you describe your worst day. And I think that's why the forms are so damn depressing. We went to appeal for dd and were successful on the care component but on the mobility (which was actually the bit I thought she would be entitled to) I came over all positive during the hearing and it was scuppered.

I know what you mean about the blagging bit. And it's such a tiny amount of money.

I suppose if he had mostly good days it would be unfair to try to claim DLA, but seeing as it is mostly 'difficult' days, it is right to go ahead and paint a negative picture.

Ho hum...