dla - am I being ridiculous?

[morocco]

hello everyone, I don't normally post on here but I hope you don't mind - I thought you guys would have the best knowledge around for this kind of thing.
I'm about to claim dla for ds1 who has a chronic kidney condition. I didn't realise I could claim it, taking all the extra stuff his life can entail for granted, as you do, until I got onto a support group and all the other kids get a range of dla. So I've sent off for the forms and now I'm getting so stressed about it.

What I really want to know is if it is normal to get so upset about the whole thing (I'm pregnant so I'm sure hormones are raging wildly). I feel like I'd accepted ds1's diagnosis by now but thinking about all the stuff I have to write down about how his life is different is really making me sad. In fact, I well up just thinking about it now. It's the opposite to my normal 'think positive' approach I suppose.

Did anyone choose not to apply for it because of that? Cos I'm wondering if it's really worth all the stress. He's quite well at the moment so maybe we would only get the low rate though I think he deserves middle rate on his worse days. Is it ridiculous to not claim? Are there any other advantgages to claiming it apart from the financial (do you get access to any kind of extra support etc). Does everyone go through these kind of feelings or am I just being weird (don't mind if you say so )

Gosh, yes, it's normal. DLA forms are harrowing. It's just a list of all the ways your LO's life is sh!te because they're not like other children. What's going to be fun about writing that down?

I claimed anyhow. And am glad I did. The money is handy, but also the form has been used by other services (nursery, Social Services, Ed Psych etc) to get an idea of what we deal with with DD1 and so although it is very tough, it saves going through it again later. Plus, in default of being "registered disabled" it helps to be able to drop into the conversation: "and as she gets higher rate DLA, I thought....."

NB you HAVE to fill the form in for a "worst" day. They are measuring the things he can do reliably if that makes sense. We don't go to Mother and Toddler groups because although DD may be OK, she may just stand in the middle of the room and scream for 2 hours. On that basis, I write the form as if the screaming is a daily ocurrence. Does that make sense?

Even when not pregnant the DLA forms are awful. It's hard to fill them in without somehow feeling disloyal to your child (IMHO at least).

Both of my boys get DLA but when ds1 reached the age of 5 I could've re-applied and claimed for the mobility component. I didn't because I just couldn't face going through it all again so soon after applying for ds2's DLA. Instead I'm waiting until ds1's renewal date comes up next year when he's 7. So in that sense I suppose I haven't claimed it when I should've.

DLA doesn't give you access to extra support but it can really help to take some of the strain off. The award letter can help in some places (I think) if you need/want to show that ds has a disability, eg those who go to places like theme parks who have a child who (for whatever reason) can't stand in long queues.

Good luck.

thanks for the advice. It's really helpful. I really need people to tell me the truth (ie yes it is ridiculous, or no, I felt that way too, cos right now I feel a real nutter about getting so worked up). I kind of wondered about using the form the same way, so it's good to hear it has some other kind of use.
I'd already been told about the worst day part - the trouble is, he's doing quite wel at the moment and I have my head stuck in the sand about it all. eg I think he's ben off his meds for ages but I look in his chart and it's the last 3 weeks (out of 18 months). Do you think it will matter or should I just act like he is on his meds (it's actually the meds that cause most of the problems, rather than his condition itself, unfortunately for him)
got to go but will check mails later
tia

try this website...it really helps many of us on MN with DLA...it's a nightmare...but worth the distress...ask us for help... i can help with ADHD Aspergers etc...others vknow about other challenges our kids face.

Lots of advice on how to describe your child's difficulties in langauge that the DLA understand!!!

incase link no good!www.bhas.org.uk/dla/index.shtml

I cried whilst writing DD's initial claim as it all seemed so negative and we usually try so hard to look on the positive side of things.....so you are not alone. I also found it hard to describe a typical day, particularly those blessed timings for everything as it's all so variable.

Another good guide is published by Cerebra - see
www.cerebra.org.uk. They produce a step by step guide for parents & carers who are preparing a claim. Don't be put off by the title of the organisation and think it won't cover your circumstances as it can be adapted and will give you ideas and a guide to fill in each question. You can download it from the site or they will send you a copy - really useful.

practical sugestion.... type it up on computer...then simply cut it up and stick it to relevant parts....actually means u can get more info into boxes...that said...attatch whole sheets if needed

try to imagine the worst day...imagine every hurdle faced in a week happening in one day...as then you realise how much has to be coped with.
also helps to do a minute by minute diary...when i did that i actually gained confidence ibn claiming as though negative- it reinforces how real it all is..AND that you are not exagerating...it really does all happen!!
(i say that cos you end up feeling embarresed to mention some of the trivial little niggly bits...but if you wrote them all down...as they happened...you'd see them mount up.

DLA is about comparing to another child the same age...yuk....and about 'time in motion'..ie...how long does something take 'compared' to 'the norm'...so you have to really anylise what you do for your child...even in our house i used examples of how often i have to physically restrain my son when angry...so i described a typical hour..when he gets home from school...gets provoked by brother...playstation freezes...tv show canceled....etc....and how in that hour i have to intervene for at least 20mins...then spend at least another 20 calming his anger etc...so i reallised that the reason i felt drained was having 3 boys...and 60 minutes to the hour...i still had to devote 40minutes to 1 son...leaving only 20 for the other 2....therefore proving straight away to me how he needs more support than normal for his age..

also...how you answer/describe matters...if you say 'sometimes he needs me to help him do......"..they interpret that as 'and the rest of the time he's fine'...which is ok if most of the time he is fine...but if you really mean "USUALLY" or "CONSTANTLY" or "9/10"...then SAY IT! It is hard to be so critical about your child...to focus on the negs....but nesaccary

ditto all the advice already shared about taking yr worst day and putting it all down.

I was distraught after filling in my form. I did put it off for weeks as I couldn't face listing all dd's problems. Was tricky as well cos she was only a few months old and questions like what help does she need using the toilet seemed riduculous. However, I thought about it and put that I need to hold her legs up / massage tummy to make her poo. I didn't think it was that significant, just one more thing to put down, but on the form confirming entitlement to higher rate DLA, this was quoted as the reason??!!

So yeah - grit your teeth. It is in your child's best interest as money will always help - holidays, toys, activities, equipment etc.. and make sure you put every point down - labour it!It is worth it in the end. Best of luck.

cerebra. org.uk have (I am told) an excellent guide to applying for DLa if that helps?

I've heard of people not applying but frankly the money makes it worth it, because of what Sam can do now that we couldn't before. Swimming lessons for example.

The DLA form and process is a total, total traumatic nightmare.

Your feelings seem totally normal.

But please rememeber that that extra money, and it could be literally hundreds per month, thousands per year, is money that your child is ENTITLED to, and money that can be used by you, to buy the little extras that make life easier.

Be strong.
Fill it in in when you feel up to it.

It will be worth it.

thank you everyone - I've printed it out and will try to build up my courage to get down to it.

Morocco - make sure you keep a copy - someone said that to me recently and its stuck in your mind. When the time comes to reapply it will be useful.

BTW I used to know someone who was doing a phd and she went into meltdown when she had to fill in a dla form. Its only recently that they actiually made them even vaguely relevent to children. Add plenty of extra notes and explanations if you need to to get your point across.

Good luck

I typed all the answers to the main questions up - i called them, and they said I could print out and send the typed sheets in along with the form, rather than copying or cutting / sticking into the boxes. So in the box I wrote 'see page x of attached notes'.

yes it's grim. I did it a year ago, and found it hard as I was still sure my life is 'normal' as I just got on with things. I now am more aware on how more demanding my life is.

The money is worth it. Also entitles you to carer's allowance (if you're not working / earning much) and more flexiblity on unpaid parental leave (if you are working).

Do it slowly. If you TELEPHONE for the form, they will date stamp the form from when you requested it and backdate the payment to then - it took me a while to do the form, and the backdated money amounted to a few hundreds, IIRC.

This is another key thing. Don't feel constrained by the size of the boxes. It bears no relation to the amount you will need to write to answer a question. Just include additional sheets for each question. Our app was so huge with all the enclosures that I sent it in in a ring binder.

You can also download the form from their web site and fill it in on the PC. The advantage then being that (with the enclosures which you do in Word) you then have soft copy of everything you have written and never need to type it out again. In theory I think you could do this and ask for the date stamped form and just include the first page of their stamped form and the last 60 pages or whatever of your soft copy.

it is very difficult. it took me 6 weeks and two forms to complete the first application for DS.

Its so hard to actually put into words and "how many minutes" just what help they need.
i think seeing it in black and white is quite shocking. i convince myself that mostof the time Ds is ok...until i writte that actually no, he requires me to fit extra locks on doors to wake 2-3 times a night where he is trying to chase a plane he has seen out the front door, or that no at 6 years old he can't get himeslf dressed... etc etc

if your in a position where the DLA would be handy but you don't need it then try and look at the positive. if he gets a lower rate then fab...it means he doesn't need as much care as many other chidlren do.

I never believed my DS would ever get DLA, i didnt even know we could claim. i completed teh forms and sent them away expecting to hear a "dont be ridiculouse" but in fact he was awarded teh highest rate for care.

It was a bitter sweet moment really. It was great that he had been awarded the money as it meant we could do things we never could...and i could get a car. but it also meant that he was considered so severe by people who are notoriously tight....it was quick shocking really.

whatever the result, we are here for you to bounce your feelings off

oh...and when ready to popst (!!! in a while)...send it special next day delivery guaranteed...costs £4...but well worth it ....

again - thank you all. I'm starting to see why you get about 3 months to fill the forms in! I guess they can only say no (but ironically I'd be just as cross if they did!)
do they write to the specialist/their nursery/gp etc?

think our gp had to write a report. I can only echo what others have said here. We did ours a bit at a time as was soooo depressing.
I was really glad that we kept a copy - as though we were succesful we had to reapply quite soon after the first award was made.
It is worth doing though. It's suprising how many other things you can qualify for once granted dla, for instance where we live you can then apply for leisure cards, public transport discounts, toll bridge tokens, cinemas passes, & discounts for days out to name a few. Good luck.

hi everyone
just wanted to update you all on our claim. we got the results yesterday and will get high rate for both personal care and mobility so I am well chuffed (in a bittersweet sort of way). big backdated cheque as well so definitely worth applying.
thanks for all the links - there's no way we would have got so much without all the specialised advice on how to phrase things etc
many thanks

Thats good news morocco

If you aren't working or don't earn much you should apply for carers allowance too.

It also affects the amount of childrens tax credit you are entitled to so let them know as well.

Congratulations, Morocco. Well done for making it through that awful form.