Moral & general support with DLA application please

[mariagoretti]

Got the forms (not date stamped) 8 weeks ago after over a year of prevaricating. Am now working through a draft with the cerebra guide to hand, and have an appointment on Tuesday to go through them with a support worker.

I never realised how much I did to compensate for DS's differences. Or quite how behind his peers he is in so many areas despite being so bright and usually 'passing for normal'. The sheer ingenuity of the tactics and the huge amount of hard work behind the scenes astounds me now I see it on paper and probably explains why the school think I'm exaggerating.

Even if we don't get DLA (or dh won't agree with me applying, he doesn't yet know I have the form) it's been a very useful exercise to systematically summarise the difficulties and what we're doing. I'm not even half way through, and there's so much more to write... as if I don't have enough other things to do. And then of course it'll be trying to make sure the paed sees that the borderline ADOS score doesn't make him 'not-autistic' and finally fighting on the SA/statement front.

The more I write, the clearer it becomes in my head but I can't share the constant low-level worry and strategising with DH. I'm frustrated by being so much further along the 'accept your child has SN & learn about them' route than he is, and he doesn't really 'do' listening and empathy

[purplepidjbauble]

I have a bottle of pink wine open after a shitty day at work, so I'm pouring you a glass too. Cheers!

[pokhara]

i sent in 12 extra pages with mine, first time didnt get it then tried 4 months later and used cerebra guide and got it, the guide is so helpful and thats why i sent so much info in. my dp at the time didnt agree either but then he didnt see as much of the problems as i did, but when we got it he soon changed his mind. good luck.

[bigcar]

doing dd3s renewal at the moment, have managed the first 3 pages so far so you're doing much better then me have a piece of paper nearby to write some positive things on and do make sure you have wine ready and waiting for when you've finished.

[Oblomov]

Watching with interest. Have had my forms for a month now. Think I am putting off applying becasue ds1 has not been diagnosed as AS. He didn't tick enough of the boxes, but was extreme in some. Wondering if its worth it.
YOu guys have such severe cases and have to fight so hard to get it, thus I wonder whether I should bother.

[mariagoretti]

Oblomov, I was thinking exactly the same till I started reading the Cerebra guide and actually writing stuff down. I think getting higher rate mobility is very hard unless the DC is a wheelchair user.

It doesn't look difficult to see how most of our dc would be eligible at least for lower rate care. As everyone says on this board ' You don't need a diagnosis for DLA or getting a statement'. And the way you fill the form in does make you consider areas of impairment that might not have seemed important. I've certainly got lots of extra things to tell the consultant at the next appointment.

[TheArsenicCupCake]

Well it's worth just filling a form in.. Because although it's horrid focusing on the negatives.. And it's blooming hard work.. It is just a form. You'll either get it or not.. And if you can keep this in mind .. You may as well give it a go.

I didn't think we would get it.. But we now get middle care and lower mobility. Ds is very high functioning.. However there are areas that he really struggles and needs a lot more care that another child of his age.

I sent in 20 extra pages of 'answers' to the different parts.. A week long diary, IEPs, EP, CAMHS, pead, and OT reports with it. Also letters and parts of school files that showed issues we had that were showing at school.. ( I did go a bit OTT).

But now ds gets to go riding once a week ( which is the best therapy for him ever), if he needs something that would cost more because it has to be sourced.. It's covered.. The extra bits left over allow him to do extra social things.. And covers the petrol and parking for appointments!

All of these thing benefit him.. And allow him to lead a life with a bit more akin to his siblings!
And ds1 and dd benefit too.. Because those extras don't come out of their budget.. So they get to do extras too!

[TheArsenicCupCake]

Oh I also sent in strategies ( a 30 page booklet).. Of things we use on a daily basis .. Just to keep things ticking!

If your doing it write it down and send it with the form!

And go for it! They can only say no

[mariagoretti]

Purple, a nice glass of virtual pink wine hits the spot... and goes well with dd's Cadburys Christmas selection box that i've just raided (oops ). Bigcar, I'm doing the draft as a google doc so I'll open another to put the positive things on (progress, strengths etc). Just have to make sure I print and send the right one! Pokhara... I'm getting worried now, were you turned down even though you sent in 12 extra pages? or was that the successful application?

[TheArsenicCupCake]

Oh and just an add... Call the dwp up.. Get them to send a date stamped form... That way you can use your downloaded one as a rough draft.. And the date stamped on makes you get on with it.. And it will be back dated if your successful!

[mariagoretti]

Blimey TACC, and there was me patting myself on the back for even having decided to send extra info rather than rely on the boxes. I thought of keeping a diary for a few days but I can't even manage a few daily ticks on a sheet for physio so I can't see it being comprehensive.

Your strategies booklet sounds really fantastic... ever thought of publishing it online?

[TheArsenicCupCake]

:) .. Diary tip.. Use the calander on your mobile to jot instant stuff down.

Have never thought about publishing strategies :) .. Suppose I could one day!

[pinkorkid]

You don't have to send in loads of extras, although it probably speeds things up. We just filled in the boxes on the forms and where questions overlapped said see pg x. Having said that, we did have to ask for reconsideration because they didn't consult camhs as we asked them to, and feedback they got from school wasn't very helpful eg "has taken cycling proficiency course" leaving out minor detail that had failed said course. But once we pointed these things out, ds was awarded mrc and lrm.

I guess, as you are feeling pulled in several directions at once with SA going on as well,you could try the succinct approach and if you need to ask for reconsideration you could pull out all the stops then and send in all the extra stuff. Once awarded it will still be backdated to your original request date.

Good luck with it - it's painful to do but worth persevering.

[bramblebooks]

Im wading through ours. I think there will be a few pages of extras too. Joining you for wine.