DLA reapplication

[bramblebrae]

Hi it's a while off our reapplying date for DLA but for some reason , oh insomnia thats probably it lol, I've been sitting reading through the pinned DLA advice and a few worries I've had over the thought of reapplying come to mind. Basically when I applied at first DS 7yo was 4.5yo and had just been formally diagnosed since then I've learnt some things through the NAS 'earlybird' course and reading the net etc so have adjusted our lives basically so that the tantrums and difficult behaviours are much less. things like I avoid shops especailly big ones and get online home deliveries and I stopped work shortly after getting the DLA which helps in that I do the house work gardening and the rest when he's at school and he basically gets all my time from leaving school til bed without me being distracted and ratty which keeps him calm and probably a million other little things which have improved his behaviour no end not to mention the one to one support at school now and social group. So looking at the form now there are definetly still clear difficulties I can put in it but some areas I can't really say what he'd be like now as we never do them it's the same as transport really cause we've always had the car and he's only been on a bus like twice both times a quiet bus thankfully and he always just sits bewilldered at new 'events' it's once he gets more comfortable in a place thats not placing demands,(anywhere that does place demands on him is difficult straight off I mean) on him that he gets adventourous and tries to do inappropriate things so long term transport , ie always having to use the bus, I can't really say what he'd be like honestly.

He was awarded high rate care the first time , it said they would send me forms to reaplly for lower mobility when he turned 5 but they never did and tbh I was surprised at getting high rate care and glad and didn't want to lose it so never did reapply for the lower mobility. Thing is I'm certain he will (after appeal at least!) get lower mobility I do wonder if it should be high as I'm seeing more and more kids his age and younger in this area at least making their own way to school and the shops etc and I'd never dream of letting him do that, it just wouldn't be safe for him or others if their was some kind of conflict arose. Anway thats besides the point I'm jsut worried that under the care sections of the form it will look obscured from the way things would be without all the help he is getting in the form of not being put in stressful situations so behaviours less than what they would be without these arrangements, oh I'm talking in riddles, I hope someone can see what I mean as I'm not so good at explaining and if I try any furthur this will get even longer - sorry btw!

Oh and don't get me wrong I'm glad of these improvements and i hope long term he will learn to cope with things or maybe I'm making it worse for later years by just hiding him from some of these situations but I think at this age he has enough to deal with coping with mainstream school. anwyay i digress again! what has peoples experience been of reapplying is basically what I wondered did they take into account the interventions and /or medications that have helped and consider how it would be otherwise. I just think if we lost the care DLA or got reduced to lower. Finacially I would have to go to work full time which could take awhile to get we'd have to do things the 'cheap' way sell the car etc and our lives would be in turmoil then eventually get a job get totally stressed then S would get totally stressed regress etc and then probably have to reapply for DLA where we'd probably then get award and then go through it all over again how ever many yrs later.

I do feel guilt over not working, and i know many people cope with work and bringing up their kids I just get really easily stressed and have had problems in the past, before I had S, with anxiety and stress. Basically when I've got a job I'm always at the doctor ill with something and when not working for last 2 yrs or so I've been to doctor for me three times with tonsilitis which I always get every year anyway. The thought of having to work again and deal with people at work and S at home with worsening behaviours most probably and sort out childcare as well, just makes me feel ill even now and we're so far off from reapplying, nearly a year away, and it's already making me anxious. I am trying to learn web design and other online stuff so I could possible work from home which I'd love but it's slow going and I don't know how feasible it is really in terms of supporting us finacially and how much time I could commit to it as I've only got from 9.15am to 3pm to do anything and everything that needs done around here once S is home I just about manage to make our dinner with him nattering full pelt next to me about some random topic, it really drives me to distraction, he does now go and play alone sometimes and I'll start to do something like iron or that and next thing I know he's back wondering around me an di jsut get so irritated at that point I end up shouting at him to shut up which I know i really shouldn't do and feel really guilty about so basically I do n't start trying to do anything when he is at home except maybe browse the web and write short posts, I save the long ones for these times In the hols I obviously have to work around him but I did realise a few weeks in I was really shouting at him much more and was generally very narky and totally knackered.

I'm jsut gonna hit send now cause you won't believe this I deleted have this post already casue I'd written so much random ramblings and now I've done it again so to avoid a repeat that could get even longer I'll just go. I'm feeling kinda like this don;t know why relief from first day back at school being over and having gone well maybe i've been completely uptight about it and I got another yr older yesterday too:( and i've had a midori and lemonade(pressie) I'm going go go go

 

lorraine

[UltraMum]

Hi there long and rambling is fine ...

 

Basically you need to write that on the forms - all the stuff you do to avoid problems - that's as a result of the disability ... saying 'if we didn't this this and this would happen' basically imagine the worst day ever and write about it. It's totally negative so pour yourself a stiff drink while doing it.

 

I found the stuff on the NAS site really useful to sit down and work through - my re-application ran to just over 10,000 words

[Karen A]

I have a form to do first application.I am thinking about starting it soon- thanks to you both for reminding me why I am not keen to start. Karen

[jannyk]

hi i got my form this morning sent for forms before but missed the deadline . i think its going to be hard to put things into words when filling the form in also dont know if its worthwhile bothering as j is now 15 but still needs help with social stuff and being promted to do things at home . i will have a go at it later i think.

[niki]

i so feel for you. I had to recently do it all over again and i fretted every day till the decition arrived. The advice i would give is read it thru carefully befor eyou send it and make a copy, i spent the whole time worrying about info id forgotten to add.

[BusyLizzie100]

I'd add to that, don't worry about writing too much or too little, just write everything that's needed. If you need to write round the margins or on extra paper, do it.

 

And when you've thought what you want to write, take it right back to basics and think again. Eg how long does it take to have a bath - I originally thought about 15 mins, but then there's also telling him a bath is coming, persuading him to undress, persuading him to get in, washing him, persuading him to get out, persuading him to let me dry him, persuading him to get dressed.... It actually takes 1hr+.

 

And don't just take the 'average' - some days may be easier and some days worse - write about the worse days, because otherwise the people reading your application won't know what your child can be like!

 

We have just had DS2's DLA renewed. Unbelievably, he has again been awarded middle rate of care and HIGHER rate of mobility. I was convinced it would be reduced to lower rate now that he's older, but not so.

[openyoureyes]

HI

 

I have just applied for my 12yr old AS son, was knocked back the 1st time but then wrote a 10 page

week in the life of!!!! I only got to the 3rd day so after 10 pages thought I had better send that off. It worked and within 2 weeks he got lower care and lower mobility, which we are pleased about. Its only when you sit and do a diary that you really see what you go through everyday. Its very difficult to just fill in the form.

 

Remember you can send lots of other information as well as the form so get writing.

 

Good Luck

[ksasnic]

Hi,

Rambling is fine I always ramble on so can fully understand lol

As to a job - I sidetrack here have you thought about buying and selling on e-Bay. I have a friend who does this legit she has just started out but it means she is working and can claim working tax child tax etc and get some housing and council tax benefit but the best is she fits this in when she wants to.. granted she has a morning job but with e-bay the hours are of your choosing so when your little boy is at school or gone to bed an hour here and there can have your paypal account fairly bristling..

Just a thought.

 

Oh yes to the ramblings I have just received my renewal form and its already making me feel nervous.. first time we just got middle care then last time we were refused so I asked them to take another look at it and we were allowed it middle rate care and lower rate mobility... very lucky but as you point out if it were to stop I havn't a clue where we'll be.. as its a big chunk of our finances.. take it away and more stress so more freking out by my boy and less cubs which has been really helpful for my son. Granted he has now been dx with Inattentive ADD but due to funding the clinical pschiatrist who only spent 5 mins with him and the rest asking a very nervous mum -ie me who's mind just went blank as to what I meant to say... said he didn't fulfil the criteria but it is acknowledged that his problems are complex and that he has special needs which demand 1-1 attention at school and close supervision at home.!!! ha despite the consultant, ed psychs, community paed, another psychologist, salt etc who said yup he did have - hence the funding pointer !!

Anyway good luck with it all...

[bramblebrae]

Hi,

Rambling is fine I always ramble on so can fully understand lol

As to a job - I sidetrack here have you thought about buying and selling on e-Bay. I have a friend who does this legit she has just started out but it means she is working and can claim working tax child tax etc and get some housing and council tax benefit but the best is she fits this in when she wants to.. granted she has a morning job but with e-bay the hours are of your choosing so when your little boy is at school or gone to bed an hour here and there can have your paypal account fairly bristling..

Just a thought.

 

 

Hi thanks for the reply Ksasnic, I've actually made one sale on ebay once lol it was a set of thunderbird cards for a pound. Thing I can't see is what to sell on there I can't work out where folk get cheap stuff so they can sell cheaper than the shops and make money considering theres additional postage to add. I think my imagination is limited in that I know it must be possible just can't find out how -any pointers greatly appreciated - though I'm sure 'd find something if I looked a bit harder! (lazy me)

just now i'm using the spare time to decorate the living room though it's taken me a year to get around to starting it from when I first looked and thought heck this place is a complete mess I need to do something.

anyway thanks again

take care

Lorraine