Wednesday 19 April 2006

What a pilaver

What a pilaver indeed <sigh> G as you know was 16 near the beginning of march...Once you reach 16 then DLA people class you as an adult...From 16 onwards then usually you are capable of managing your own affairs according to them...LOLOLOL  even your bog standard average teenager isn't that capable at 16 as such...As regular readers know there was a mix up back in march with DLA and that did get fixed kinda...So his renewal form he's supposed to fill in himself...Yeah right and am the queen of sheba <ggg> ...Well i telephoned the DLA office in blackpool and actually got someone sensible on the phone <SHOCK> ...I explained why i was calling and would it be possible for me to fill in the form for him and get him to sign it at the end...I explained that his writing is barely legible at the best of times let alone when he is stressed filling in a form like DLA one is...Nice woman said has he requested that you become his appointee to which i said yes...She asked if we'd had a home visit yet from local DSS office to which i said nopes...So she checked their records and said they had written to them at beginning of april and that i should hear from them soon...She couldn't tell me which of the 3 offices it was though...As his official appointee then i can fill in the form for him :o) ...So i said thanks and told her you'll hear from me again in a years time...She was surprised and said but we don't need to review appointee...I said not for G but for my other son who has same condition and will be 16 in may next year LOL...Anyways i got off the phone and then went and phoned local DSS...Eventually after about 6 attempts i got through...The poor woman on the switchboard hadn't a clue which dept to put me through to as they don't deal with DLA...Eventually she found a number for home visits and said we'll try them and if it's wrong then they'll put you back to me...So the woman i spoke to in home visits was nice but she wasn't sure as such about it all...Instead of coming out to visit they prefer that you go in to the office...I told her well G will be in school obviously and cannot take time off as his exams start in about 3 weeks time...He also doesn't get home from school until the office is closed...So she grabbed a man who was passing her desk who does deal with it all...Tomorrow i go in to see him at 12.30pm and i fill in my part of it all...Then i need to get a letter from our gp to state G is not capable of managing his own affairs and hand it in...This form is rather different to the version for under 16's so i need to look over it all very carefully...I just hope that once it is sent back that whoever in DLA office looks at it doesn't decide to lower the rates G gets currently...There is far too much of that happening and i really don't want the hassle and stress of having to go to appeal neither for myself nor for G...See although G is extremely capable academically and comes across as your average teenager he does still have a lot of social interaction difficulties...On the surface they may not be apparent to anyone who doesn't know him but they are there...Well we have 5 months to get the form filled in properly and back to them...Fingers crossed that this time he gets awarded the same rates for care and for mobility and that he is awarded DLA for life...I won't have quite the same hassles next year with M as his was awarded for life 2 years ago but i will have the rigmarole and pilaver of being made his appointee...G will be getting his EMA (education maintanance allowance) money of £30 a week when he's back at school in august...That is where we will start to get him organised and managing his own finances...God forbid he also has another £200+ going in every 4 weeks...He'd spend it all on rubbish...He's bad enuff with money at the moment without adding to it LOL...I use their DLA money just now to buy them clothes, games (sometimes), pay for the activities they do (ie garaths skiing) and to go out and do things with a carer...I'd like him to save a fair bit of his EMA money to keep for uni or college...That is going to be hard pushed to do but i live in hope...I HATE the DLA form...It's mega thick and basically you are damning your child when you fill it in...With a condition like autism which is a mental impairment then you HAVE to write the worst day possible...That worst day can happen at ANY time there is no specific textbook day for someone on autistic spectrum...Through personal experience with the boys i know that they can change from being nice as pie and *normal to having a total meltdown within seconds for no obvious reason...Anyways enuff of stupid forms i don't want to think about it just now LOL

They were back at school today YIPPEE!!!! and i did nothing...I slept all morning as i hardly slept last night...Now they're back i need to get back to a routine of some kind and back to the gym...Am too bloated to go on the gym equipment but i'll start with going swimming for this week...We had sad news from M's school...One of the pupils passed away at beginning of april :o(  It wasn't a boy in his class or someone he knew particularly well but he knew him by sight...Next tues they are having a memorial service in the school and parents can go but i don't think i will...Will see if my friend is going first.

Can i just say for anyone who missed the entry when i explained why the private journal...It's just some comments left recently confused me a bit (am easily confused <gg>) ...The private journal is NOT for me to use to sound off or as a sounding board...It's not a way of getting things out that i need to let go of...The reason i have started it is to write a record of mine and my family's lives right from when i had the boys...I always wished in retrospect that i had been one for keeping a diary back then...I wasn't and i do really wish that i had...I am basically writing my memoirs i guess of the last 16 years ever since i had G...It's about the autism and how it has affected our lives...So far i have only written 2 entries one about G up to his assessment and one about M up till his...The centre where they were assessed it was announced in our evening paper today has been saved from closure for now :o) That is fantastic news and hopefully it will continue to stay open and do the wonderful work it has done for the last 30 years...Next bit will be describing the centre and the work they do and the in depth assessments that both the boys had with ALL different professionals involved in the diagnosis...Basically maybe once i am finished (although it is a never ending story) i may see if i can get it turned into a book LOL...Well hey aim high in this instance you never know...So there you go am writing a chronicle of our lives...K will get to read it as she may be able to add stuff i have forgotton and there is one reader of this journal who may also get a link to read it...A family friend who may or may not be able to give some input in the early years LOL (You should know who you are) The sounding out and letting off steam i do in this one <ggg> ...So don't worry i will still be writing stuff here and i will be taking some bits from here for the other one...Right tea time i think

Toodle pip tc xx

12 comments:

Anonymous said...

Phew! I'm glad I haven't got to go through all that DLA stuff. It's a full time job just going through all the bumph by the sounds of it, when do you have time to have a life yourselves?  I hope it goes smoothly when you have to sort it out for M next year.  I think the book idea is great and you should definitely go for it, you've certainly got the makings of some interesting reading material and you are very good at getting the point over.xx

Anonymous said...

I know what you mean about the rigmorole of the DLA, i had loads of hassle when they lowered Laurens money, and i appealed and didn't get anywhere, good luck.

Jo

Anonymous said...

I meant to add that I'm still not getting alerts for your entries, any idea why? I'll keep checking over here to see if I've missed anything!

Anonymous said...

forms.................forms................DLA.....................DSS..........DWP.............


Anonymous said...

Caff I only got a radio alert on this one as you are on my sidebar it was easy for me to get to your Journal ~ just thought you would like to know ~ What a pilaver you have to go thro' for the boys ~ Thank goodness you got someone sensible at DLA ~ Glad you got to have a sleep after the boys went back to school ~ I think your private journal is a good idea for you to write your memoirs ~ Ally

Anonymous said...

guilty as charge, I mistook what you said, its more like an autobiography of your life. I wonder if my life is interesting enough to do one. I hope they sort the DLA for you with not too many problems.............Jules xx

http://journals.aol.co.uk/jules19642001/Itsmylife/

Anonymous said...

I know those forms are complicated Caff especially when you're writing of someone else.  You have to be brutal, they do need to know the worst and with me I tended  to not want to do that, so I had help from my sons professional nurse that is alloted to them, which I will be forever grateful for.....so any help grab it!! it's worth it.

You'll find the writing will act as a sounding board as I said before, because time has passed you'll look back on it all much clearer than when living it and I think that helps.  Good luck with it Caff, it will be invaluable to others in the same situation, a personal perspective is always better than a text book type. Rache

Anonymous said...

Sorry if it was something I'd said about the private journal - I think it's a really good idea and if you can turn it into a book it will help all upcoming mothers with autistic children who will be able to learn from all the stuff you guys have been through.  Such as DLA by the sounds of things.  At least you've got 5 months to get it back............Good luck with it xx

Anonymous said...

Oh my, better keep Goo aged 6 lol

Anonymous said...

What a nightmare the DLA forms are.Just been going through all this myself and have never been so stressed in all my life.Hubby had major surgery for cancer and they turned him down.

Anonymous said...

sorry,forgot to add. . .we have appealed so good luck with yours too.

Anonymous said...

DLA forms... argh!!!
How sad about the boy from M's school :o(
Your private journal/book sounds like a very good idea.  If you ever decide to add more readers I'd definately be interested in reading it.
Sara   x