AIBU to wish that people would realise that there is more than one child who needs help one here

[2shoesdrippingwithblood]

sorry but I am getting really pissed of.
there seems to be a couple of do gooders who seem to think that there is only one child on the sn topic.

It's all ridiculous, and there are stupid hurdles even when you get stuff- Mum is hopefully getting us a dishwasher. I admit I have been slowly collapsing under the weight of just day to day stuff- DH is back at work but behaving like a small child; I even have to force him to wash and change out of vomitty (baby not us!) clothes now. But the landady hasnt made a decision on if we can install the dishwasher, even at our own cost. Ditto a shower. And the tumble drier imploded but we can't us the outside line as ds3 treats it like a safety hazard. DS2 turns off ds1's alarm now but we can't upgrade as that wold have to be attached to a door- another leased house no-no.
I can't push it as she the extension on the lease is up now and a move would almost certainly mean an entire change of alls chools etc due to limited ousing availablility above 2 bedrooms in this catchment. I don't want to have to deal with new schools, GP, HV etc.

And I know compared to you lot I have it easy; at least the kids can get upstairs / out and about and we have a car (even if I have to fight the neighbours just to aprk it close by!), and currently we have enough money to buy most basic stuff (on benefiots I think next year if I cant fin childcare).

Yuo'd just think people would want to make tings a bit easier but it just seems to be hurdle after hurdle!

Sorry, I just assumed that you weren't getting everything you were entitled to, and wanted to make sure you were. I was chatting to a mum at physio on monday and was shocked to discovered that she has only just applied for DLA for her son who is 9, its surprising how many people don't get everything they are entitled too.

have you tried this to check www.entitledto.co.uk/ as i know you might be able to get help with morgage? Also are you on a metre? we are all pretty much in the same position with gas bills ect can you ask them to hold off putting uo bill till Jan when your dh goes back to work?

not sure (you are probably very aware) that most energy companies have some sort of 'vulnerable tarrif' - for those receiving DLA, or reg disabled (or dare i say it get IS), the british gas one at the moment offers no raise this winter, and 10% off. thought it was worth a mention. sorry to harrass if you already get it.

i have only just found out about the gas price thing, last week. And I have been in the 'system' for 10 years!!

we don't get the gas thing with our company, they just talk about insularion, which we alreday have.
don't forget you can get your water rates capped.

Is the water rates thing just if you have a water meter ?

Wow riven, I'm really shocked that you needed to supply a tumbleform for your dd yourselves . It just goes to show that funding is a bloody postcode lottery.

Have you tried approaching BDF Newlife for help with the bike?

BDF Newlife

dd doesn't qualify for BDF newlife. She was brain damaged at birth.

Their blurb
Do you consider applications where the child has Autism or Cerebral Palsy?
Yes, as long as we have a letter from a Health Professional stating that either the condition is inborn or, to the best of their knowledge, was not related to birth trauma, infection or other conditions. We define a Birth Defect as a condition, genetic or otherwise, which was present in utero.

re the tumbleform. Its cos we already have a 'special chair'. But we wanted something easily portable and that would be in the kitchen so dd could watch us cook. The Panda chair is a bastdrad to keep moving as its very heavy so it remains in the front room.
You're only allowed one chair when you're disabled.

oh well, it was worth a try

it did annoy me cos its really hard to prove 'when' cerebral palsy damage happens. Some docs say dd was damaged at birth others say cos she made no effort to breathe the damage had already been done.
As for proving autism! Impossible to prove it was pre-natal I imagine.

I can prove that DS1's CP happened in pregnancy, something to do with how the damage happened.

Same here SGK - one part of dd's brain is far smaller than average. As this part develops at around 16 weeks of pregnancy then it is linked to her symptoms. Whether it was an 'event' or a chromosome disorder we'll never know.

riven/nmc

Found out recently BDF Newlife has just changed their name and their philosophy to now help all disabled children regardless of how and when it was caused, they are now ....www.newlifecharity.co.uk

we are still trying to prove what caused it. been doing this since she was 5

ooo, thanks glittery. Will look into them.