At least somethings gone right!!!!!

[RexandBen]

having a stressful time here the last few weeks We've got our tribunal coming up for DS1 to be assessed for a statement. We were flatly refused DLA and we were generally geetting stressed out with life and the stress of caring for an autistic child and an overactive toddler.

BUT this morning I got a letter saying that our appeal letter for DLA has been looked at and we have been awarded... wait for it... HIGHER RATE!!

I'm so shocked that they refused us outright and then gave us higher rate (but I wont be complaining!)

well done rexand ben But I find it disgusting that they refused you dla at all and then awarded you higher rate at your second attempt, thats disgusting. So many people must dla that arent getting like you wouldnt have been if you hadnt reapplied. Dont feel guilty about getting higher rate - you deserve it. We get higher rate too and my dd really is as good as gold and i feel guilty but our life isnt normal and neither is yours, thats what dla is for. (I hope this makes sense!)

i mean alot of people must be eligible for dla but are refused when they should be getting it.

What a relief! Sorry you had to endure the original hassle...olympic standard hoop jumping seems to be built into the process. Well done.

RexandBen....thats really great news.......How on earth can they justify refusing and then awarding higher rate, what planet are these people on???

We are STILL waiting for a decision but I live in hope. We were turned down when dd was a baby and I didn't appeal but I didn't realise then that its just their way of seeing how serious you are and how many hoops you're willing to jump through.....like we don't have enough to do!!!

Sorry rant over.

That must be such a relief RexandBen. The system is an absolute disgrace, turning you down in the first place.

well done- it does make a difference.

And I STILL haven't done my DLA forms eek (renewal + appeal for higher rate mobility)

Well done, rexandben! We were refused first time too, then got middle rate on appeal.

Excellent! It's amazing the 'small' things you can buy or do because of the difference the money makes....I won't list it all again but even down to feeling able to simply throw ds1's clothes(mainly socks) away when he has found a thread and pulled....and pulled....and pulled! (we still don't know why he does this?) Also we are getting a laminator this month so i can make some PEC type cards for sequencing and using to try and change some of ds2's routines. And finally ds1 struggles with handwriting/drawing so we now can afford to buy a print cartridge for the pc every time it needs replacing....b4 we used to 'ration' him to a few 'prints' a week...now we encourage him to 'express' himself in the best way he can....the p.c- and he LOVES using chalks and pastels....so we will be able to lamiate them so they won't smudge....trouble is my husband is certain i'll be 'laminating everything in sight'! I reckon i could start with a 'Things to Do' list!!!! (well it'll look impressive!)

....I just feel the dla allows you to not only provide what your child needs...but also kind of allows you to 'indulge' in things that your child wants....without feeling guilty.......as i feel particularily in the case of my ds2 there is a very fine line between what he neds and wants and i cannot always be sure .....hope this bit makes sense! (i'm thinking of his obsessive playing...and 'needing' the whole set of whatever he is 'into'....be it books/cars/marbles....etc!!!......my MIL just thinks he's spoilt)

That's wonderful news, I'm so pleased for you all.

The DLA guys must HATE 'Mumnet'...soon to renamed the 'Claim DLA NOW!!!' site! Shame the 'system' didn't make sure that all those entitled to it were told- same old story....you have to fight for what should be straight forward. Know this is a bit simplistic....but....why in the case of when a diagnosis is made doesn't the paed etc simply have a very simple form to fill in (which would be sooo short that THEY wouldn't need 6 weeks to complete it! ) -just advising the DLA that a person 'may' be entitled....which wiould then trigger the DLA to send the forms....just imagine how those people who have just recieved devastating news of a diagnosis they weren't expecting would feel if they then had 'hope' of an income which would HELP their child get the support/resources/facilities or equiptment they need.

Told you it was simplistic....but ofcourse totally impractical -!!!

so true misforgetful, what a great idea

no, it is a good idea mrsf. I had no idea about DLA for a good few months after DS1 dx.

Thanks everyone for your messages! I am feeling slightly guilty about our award (even though I know I shouldnt), but I am very excited about going up to IKEA and buying a decent storage system for DS1' s bedroom/therapy room!

i didnt know about dla until nearly 2 years after dd was put on the special needs register. I rang my HV to ask whether I would be eligable for carers allowance and she explained i was entitled to dla aswell. I think its disgusting they dont tell you

Rexandben, well done and DON'T FEEL GUILTY! Fio2, disgusting that you could have been getting DLA for 2 years before you found out. I found out about 2 months after our dx from another parent.
MrsF, agree about the laminator. I laminate the photos I keep of the kids in my purse and any membership cards I get and anything else I can get my hands on. Now, control yourself, but next you need to get a Dymo (or similar) label maker. Its electronic with a key pad, you type in what you want (e.g. to stick onto PECs etc) and it whirrs out a piece of sticky tape. A friend of mine labelled the toilet when she got hers among other things! You can get a good enough one from abotu £20, Brother do them too.

Oi - don't you dare feel guilty. Enjoy the well deserved money, you're spening it very well.
xx

Davros....my husband's gonna 'love' you!!!! Actually it sounds a great ide...another thing i thought of getting ds1 to help him improve his writing is a 'graphic tablet' - it connects to the p.c and you write/draw on the pressure sensitive pad with a special 'pen'...and the image/words appear on the screen....there's another 'gadget' which i've seen which is similar but 'converts' your 'handwriting' into 'type'...and the interesting thing about this is that i think it would 'encourage' him to write 'neater' as if not the wrong letter will appear on the screen.

REX&BEN- Do you REALLY want me to list ALL the things i think DLA can buy....!!!!!!Seriously....just think of all the times when you've thought of a 'useful' toy/place/thing/person/activity for ds and then had to 'downsize' because of cost.....when we got ds1's backdated pay...£600+ we bought him a bed and decorated his room with 3D textured silver wallpaper and a dark blue metalic ceiling....and bought loads of different 'sensory' lights and 'fidget' gadgets......and gradually as i find them in shops i have bought large assorted coloured and sized 'mirror' balls and spheres to hang from the ceiling to represent planets....but in reality they reflect all the lights....NOW THAT IS NOTHING TO FEEL GUILTY ABOUT!!!!!!!! :0

I wish they had given me a back payment of the all the money I should have got!

Caroline5 I really think you should be getting higher rate not middle rate. If they are saying your dd has a severe global dev delay - I would assume you would get higher. I would reapply - we get higher rate and our dd is moderate, or was when we applied (I dont know if she is classed as mod/sev now or not, it changes doesnt it if they keep missing/reaching milestones(?))

Hi fio, yes I think we probably should be getting higher rate too, but can't get up enough energy to argue about it! It's very nice to have anyway. It runs out in 2005, and I think we should be able to apply for mobility in May when she's 3. Her school described her as having "severe" dev delay on a form recently (she's got to be reviewed by an ed psych) and the Paed's said it too
She's got a friend too now - a little boy with Angelman's syndrome - looks like they will be in the same class for up to 15 years!!

Thanks for your photo - your kids are really sweet!

It's funny isn't it that "we' feel guilty for claiming DLA. My DS is now 14 & his award runs out in May. I keep putting off doing the forms! Then I think, "perhaps we don't really deserve it, after all he's not as bad as some children" (ADHD). Then I see other 14 y olds & think, "yes he is". With a "normal" child, you are starting to see independence at this age. With mine, he may be taller & bigger than me but he still throws tantrums & has to be"reminded" to wash etc. (Then I wonder if that isn't the case with all teenage boys ... except that DS1 started looking after his personal appearance in a big way before this age...). It's just 1 more thing to worry about, isn't it.

I'm thinking ahead to if/when we get DLA for ds1 and think that a laminator could be really useful. We're due to start up a visual timetable for him soon so a laminator could be useful for all the symbols etc. How much do laminators generally cost and where did you all buy yours?

I have thought of another DLA use...Today i was in town alone and i deliberately 'observed' other families out shopping with their kids- some were good some were naughty- but none of the parents appeared to be 'distracted' from ther shopping by their kids- Dh and I cannot go anywhere at all with them and 'keep on track'- we are either 'safety aware' or 'behaviour aware' or suchlike- There is no doubt in my mind that i will soon HAVE to allocate some of the DLA to provide some 'respite' simply so dh and i can once in a while go 'saturday shopping' or do the 'DIY thing on a sunday'- as i realised today looking at all these other 'families' that though i say it's fine us taking turns shopping etc- it would be nice to go together too occaisionall- so i'm going to ask my M/H social worker about us paying for say 1 saturday/sunday a month where the boys could go somewhere and be happy- cannot leave them with relatives as noone is prepared to accept the autism issue....so when particularily ds2 has a meltdown there is no attempt to follow the care plan i give them- and therefor we have got to the point where we just don't go anywhere.

my dd dla is helping pay for a new car after the old one packed up before xmas. it also pays for her sleepsuits to stop her scratching (30+ pounds a time and she's just had a growth spurt), her bedding and the bits and pieces we need to make the place allergy friendly. i didnt like the idea of spending her money on a car but we need one to attend her appointments. tho if dh gets DLA awarded this time, his backpayments due will cover the cost of the car and he said he will pay the loan off.

I got my laminator from Viking Direct (stationery company). I think Argos also do them and Robert Dyas. I paid about £90 but I got an A3 one and I think the prices have come down or there's always special offers. The pouches are expensive but a box lasts ages, remember to cut them up if you're laminating something smaller than A4 and keep the scraps. Make sure you get at least an A4 one as you can also get ones for doing just little membership card type things which are cheap so you have to be careful when you order.
Misdee, presumably you're not getting higher rate mobility or you could apply for a motability car?

Talking of laminators....Another 'use' for them is that you can make your own 'write on/wipe off' type workksheets aimed specifically at the child- ie for those learning to write/numbers you can do the usual 'dots' that they write over- and I have some of clocks without hands- the child adds the hands themselves...and faces without mouths- so they can draw the 'smiles' or 'frowns'- also excellent simply as a 'wipe clean' drawing board....and When i get mine next week i am getting an A3 one as appart from being able to laminate DS1's larger 'works of Art' - the A3 size sheets make excellent 'place mats/table protectors'....not the heatproof sort- but great for using to avoid every bit of scribble ending up on the table!! Apart from wipe off pens you can even use wax crayons- they still rub off- but you'd need to help most kids as it's a bit harder than pen! Also you can make simple 'puzzles' and matching games- i am planning a large 'doll' with 'velcro-on' clothes....Davros- now you know why dh reckons i will 'laminate' anything that stands still!

By the way.... on Ebay people sell for example 100 laminate A4 puches for £3....argos charge £6 for 25...there may be a 'quality' factor (good laminate is very rigid -and feels thick ....but for most 'projects' i reckon the 'inferior' ones will do!! I will get some and let you all know how good they are- as i think they even do 200 for £5....which is very reasonable!

MrsF, how can you wait til next week????! Worksheets are good and you and you can buy quite cheap books in WH Smith etc with matching, dot-to-dot etc, tear out the pages and laminate them for perpetual use. Best thing for wiping clean is baby wipes!