Well its been a pretty horrible couple of days all round

[shimmerysilverglitter]

for DS and I. He is 7 and has HFA, we recieve DLA for care at the middle rate, mobility at lower rate. He is in mainstream and not doing great it has to be said. Most days I have to stay longer than the other parents to settle him in, often get called in to help out if he is in meltdown.

I live in London and obviously you have to pay to park here. This morning he went off on one and I had to stay late with him. Get outside at 11 minutes past 9 to find a parking ticket on my car. Not the first time this has happened. After a previous ticket I contacted my local council to request info on a disabled parking badge. The response was catergoric, we only give these when the disabled person on highest rate for mobility. I explained that ds has autism and needs a lot of extra support at school and that parking is costing me in excess of £15 a week, not to mention the tickets I get. "Yes, we get a lot of complaints like this" she said. SO F*CKING CHANGE IT THEN!!!!!! It appears that once again ds's Autism is not considered to be a REAL disability. I am a single parent who cannot work because of needing to support ds. So my finances are not great as it is, parking costs and tickets make serious inroads into my budget. How is this fair and what can be done about it? Nothing it seems.

Then on top of that Dubious Dave's budget targets those on DLA and we all know what that means for autistic kids, especially high functioning.

We spent the weekend at my parents house where my father spent the entire time shouting and snapping at ds as he appears incapable of accepting that ds is HFA. As always happens we come away and ds is not himself for at least a week afterwards because he cannot process that kind of strict discipline, hence the meltdown at school this morning.

I tell you what, I knew it would be hard when ds was diagnosed but never expected it to be quite this tough and to keep on being kicked in the nuts by all comers. Even his own family can't/won't accept his disability and make allowances for it. It makes me so and scared for his future.

sometimes families are the worst shimmery, my xp is embarrassed by ds in his wheelchair so wont take him out anywhere and my ex mil is always popping over with suggestions and lotions and potions to cure his cerebral palsy!
if she comes up with anything im marketing it!!!

It is the same here for the blue badges, we can't get one as DS2 doesn't get mobility.

Its terrifying about the DLA, if DS2 loses his, then I lose carers and a huge amount of FTC. There is no way I can work as need to be here to look after him.

It is really scary atm, everyone is scared

. You never know glittery.

Feel bad for being such a whinge bag now.

Your xp is ds's Dad I take it. God what an arse.

XH was a bit like this when autism was first raised as a possibility with ds, told me it was my fault and anyway ds didn't have it at all, it was just ME trying to get attention for myself from Medical Professionals , whatever that is supposed to mean. He is a lot better now though, totally accepts it but still bugs me as he doesn't like to tell people as "it is not relevant and I don't want ds to be judged" again whatever that is supposed to mean.

It has been a tough week though and we are not even half way through.

Yes I am trying not to think about it too much. Ds's DLA was up for renewal in 2013 anyway so I am trying to keep thinking positively in that we would have had to re-apply then anyway.

In exactly the same position though, will lose CA and CTC etc if his DLA is stopped. Could not possibly get a job, who is going to employ someone who has to leave for up to an hour or two almost every day to support their child? Not to mention the fact that I would probably be late daily when ds refuses to settle at school and I need to stay to help him.

Very scary times for the disabled but I knew this would happen if the tories got in, I just hoped for the best.

Yes Riven we could and often do but some days he won't leave the house unless to go in the car.

You are right though and from tommorrow it will be walking (scooting for dc) where at all possible.

No more visits to parents either, I am done putting him through it.

at your Mum and the dogs. That is horrendous!

Sorry to hear things are so stressful.

Is your DS statemented? If he is having regular meltdowns in school and you're being called in, it sounds like he really needs one. He could get transport then (and a different school, it sounds like the current one isn't ideal).

If you are called in to take him home before the end of the school day, you need to ask for that to be recorded as an official exclusion.

At least the DLA changes will be rolled in in 2013, which gives time for consultations. The NAS has said they want to be involved and are asking for parents to get in touch - there's an email address on their website.

I know that my local council generally only allow blue badges for HRM but there's also a more rarely used discretionary route where you supply a letter from your GP to say you need one. So check on your council's website because if you spoke to someone on the phone, they might not be aware of it.

yes xp is ds's dad unfortunately!
refused to accept the CP and said he was just "delayed" due to him being born 14 weeks early, once it became apparent that wasnt the case he flung us out as he "couldnt cope"
he didnt want him to get the wheelchair as it would make him look more disabled, dunno how right enough as he has bad muscle spasms, floppy trunk and cant hold his head up without a collar or a 45 degree tilt, if anything the wheelchair makes him sit better rather than slumped in a buggy but heyho what do i know eh?
he is very handsome tho, obviously doesnt take after his dad!!

I concur that Glittery's DS is handsome, especially dressed as a pirate

Shimmery, if you can't moan and voice your fears on this board, where else can you go? And you're not moaning!

cheers 5

Shimmery didnt think you were moaning, more venting i'd say, so vent away, it'll be someone else another day

hey that rhymed!

You need to put in a written request for blue badge. When it's refused get written reasons then go to ombudsman. They can't just say you must get this benefit they can exercise discretion to make exception. Ombudsman cannot intervene in decision but if they have not even considered whether or not to use discretion or not given reasons could ask them to look again and may mean they just give it you. There is info on NAS on blue badges you could look at

Some really fantastic information on here re Blue Badges. Do you know what? I am going to pursue this. He needs one, he really does, it is not just me taking the piss.

He is statemented and we are currently pursuing a move to a school for kids with Autism, going as well as can be expected I suppose. Panel sits again in a few weeks when they have all reports etc.

Glittery your xp sounds like a real peach he really does, unbelievable.