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Happy birthday!

To loves_books - I hope you have a fantastic day! xxx

belated birthday wishes!

I have missed more of my flist in my stress.

So, timberwolfoz, complexlight, fortesomniare, guinevere_81, princess_aleera and koscheisigma -
I hope you all, every one of you, had a fantastic day with loved ones, presents you wanted, and cake, and all your birthday wishes came true.

And I wish the same for you tomorrow ladyasprin

It was okay!

Thank you everyone who has sent messages and comments of good will, and who was thinking of me today <3

BK has has enhanced rate daily living and standard rate mobilitity with her PIP. I believe this means she will qualify for extra on the child tax credit too. Which means I can continue to pay for her tutor, her therapist, taxis when she is too till to walk/take the bus and not use my own DLA, so have money to pay for prepared veg, ready meals and takeways so we can eat a bit more than mostly chips and baked beans on toast :)

Thank you again.

The downside is there is no guarantee her disabled bus pass will be replaced when it expires on her 17th birthday, and given the stress and meltdown and self-harm that went on all night before she had to catch a bus before 9am on her own last week at the fear of talking to a bus driver, of asking for the correct fair, and worst of all, dealing with money and change, she won't travle alone and lose independance is we can't somehow find a way roung this. the only way is to contact Oxfordshire City Council and see if the anxiety and stress and the fact she just will lose her independence and has enhaunced daily living and standard rate mobility with no actual physical impairment. But I'm done fighting for disabled rights for now. it can wait til the end of August.

As for my own transfer, when I was givne an indefinite award of DLA - who knows, the UNCHR has issued its report on the human rights abuses of disabled persons over the past six years, and a new govt is dealing with it, perhaps we won't have to be reassessed, those of us who had been previously given it for life!

Happy birthday!

To fortesomniare

I hope you had a great day and all your birthday wishes come true

xxx

Help!

If anyone on here in England and Wales and has any experience/an intelligent clinical eye and understanding of welfare rights and/or law please please please help us! I'll travel to meet you!

I have a date for the 20th July. it is for the first appeal, the one that is supposed to be lapsed, I don't have any evidence for it regards mobility, nor the vertigo, as I accepted their decisions on that and the outreach worker prepared another submission for the second appeal. the DWP gave me backdated award money and haven't demanded it back, and then stopped paying and haven't informed the court of anything.
I have a bundle that refers to the second appeal so I can't even tweak the submission to include mobility and vertigo as I won't have the correct page numbers.

Help! There are no organizations with funding/staff/time or Bk falls through the net being 16 not 15 or over 18!!!!

Cold Summer

Set six years ago this bank holiday weekend, written from a month later, posted just over five years ago, it was the saviour of my sanity, as you'll see if you read the angry notes!

http://archiveofourown.org/works/198412/chapters/293343

I am really beginning to think I'll never be capable of writing properly again. I tried a bit of Rare and Precious Chain yesterday and my memory and concentration just would not function!

Writing Meme

stolen from barcardivodka and complexlight

the meme...Collapse )

Well, that was interesting. I've done this really to clarify my thoughts and get optomistic that I will, again, one day write regulary and be happy and finish all my WIPs. Sorry if I came across a bit judgy!

(It's a bit rushed too, as I have a whining child demanding to be fed and wanted to get it done in one go - sorry if I offended anyone! Please, do comment...)

Tags:

AO3

Is anyone else having problems with AO3 today? It keeps freezing then vanishing!

Bloody typical, the one day I'm both well enough, have enough mental spoons and have free time, it's down!

Urgent help needed!

Can any of my UK flist on here with any knowledge of autism and child protection, domestic violence and chilkd protection, and the social services in general, contact me immediately.

It's happening again, the SS have totally the wrong information, are not listening or accepting evidence and are pushing us to something that will harm BK, like with the flexi schooling back in 2010 - only worse, it will trigger exactly what they believe they will prevent: her father turning up to the house with threatening behaviour. Once BK stops texting him, he'll forget about her, but send him court papers etc, he will get aggressive.

The CAB have told me to call the SS's bluff and tell them I will not see a solictior for an injuction (they also advise if i have to go ahead, it is a non molestation order I will need, not an injunction, as that will achieve nothing in protecting my daughter, and that is more complex and wil require both of us in court).

I can't get hold of her therapist, who has spoken to one social worker. I keep trying Women's Aid, who might have experience, but no luck.

The social worker from the Hub is not in. the separate social worker who called, unaware of the Hub, didn't give me his name. And as if goes on I get too scared to tell them NO!!!

HELP!!!!

I just want to try to get into a routine of getting her to do her balance therapy, her new physiotherapy, take her meds on time, her education, and her acting with my limited 'spoons'. And to deal with all the meltdowns coming from her upset at giving up courses, being more ill, and the PIP assessment - whch triggered her to run out of the house (and get on a bus to Wycombe as she had no money for Starbucks, and then somehow decide she didn't want to worry her Nanny so go to her father's, who took her phone and prevented her from leaving)

Btw, the police here felt there was no need for SS involvement and were satisfied it was a one off and I could keep her safe. this is all tick boxing from bureaucrats that led to this threat - from a no names consultation too, and from a well meaning Wycombe officer who wanted us to have support - which probably exists in Buckinghamshire through council funded charities, but there is nothing in Oxfordshire - you could be dyuiing of cancer with 4 kids, 2 on the spectrum and you'd get nothing, The last respite for non verbal, low functioning kids closed 6 months ago. and still 70 million cuts to come...
This Monday BK had her first controlled assessment in her English Lang GCSE - after just 6 weeks at college, only 3 in proper classes due to the disorgnaisation, and with the assessemnt for the dyslexia only the Friday before. she had to write an arguemntative peice, rhetoric if you will, and her topic that she chose was, "Only Women, Actors and Gay Men Wear Makeup ", which I guess has many of you grinning, when you think of her major conribution to our Lewis AU :) She got to write it, preapre it, and was allowed to take 50 words of prompts and spellings - guess what, she just took spellings, although she is not allowed to lose more than 5% of the mark due to the dyslexia. She was stressed all weekend, I was stressed all weekened, as she did nothing but procrastonate and no revision or prep or anything, Baring in mind the meltdowns if she had to write anything by hand even three or four years ago, you undderstand my apprehension at her not writing it out over and over again. However, she treated it like a script she had to learn, learnt it on the bus, reproduced it verbatum in half the time and had 45 minutes to check her punctuation, etc and tidy it up. I am so proud of her, really. if she lets me, I might post her arguemnt too, as it was very good :)

I'm struggling on, still no where near as many base spoons as before the flu. My target is still a healthy meal, two more healthy snacks, our meds on time, Bk on the right buses and in class clean(ish) and with the right paperwork. Slowly getting there. Only managed to write anything three times since I last posted, but one was a bit of Poisoned Minds in long hand in Magic Cafe, while eating yummy food :)

Henrietta has a bucket list (did I say that I've been told she is obsolete and the wheelchair maintenence people have told the Nuffield she needs to be replaced, but we bent the rules last time as BK was 7 and needed me, and with cut backs, lets call in my bucket list too :) (actually I'm crying inside, too many changes and I love my powered wheelchair, thank you flowerpotgirl for immortalising her in a crack fic!).

Anyway, the first week of college, when it was chaos and there were days off, we went to Stonehenge at last. owlbsurfinbird you were so right, it was so easy :) Becasue of the lack of lifts at the moment we went to Sailsbury via Bath so we could be on platform 1, which has the ramp and not a lift, and came back via Basingstoke and Reading so we arrived on platform one :) There was a Tour bus that stopped just outside the station who tried to sell us an all inclusive ticket which he claimed would be cheaper but BK wouldn't have it, which was just as well as she got in for free as my 'carer' (and free tickets she can always be my carer!).  the centre was amazing and had the most divine lentil and tomato soup that was gluten free, dairy free, nut free, coconut free and BK wants me to try to recreate it (oregano I think). I had always worreid ti would be a disappointment, too touristy, too fenced off, and although it is both, as the bus from the cnetre to the stones approached them I could feel the power and spirituality and age of them (and no, it isn't anyway psychosesmatic, I go backwards, have a look at a wheelchair bay on a bus). We spent about an hour there, just sitting and soaking it in. there were some art students taking shots of a friend in various historical costumes. BK took loads of pictures and I tried to get them off her facebook page to show you some, but it wouldn't work.

Not on her list, but connected, that September we also went to Avebury the next week, and parked BK in the museum and I walked around with my crutches for the first time since BK was two. I was in agony and bed bound for a week but it was worth it. and this is funny, for years we've talked about talkign the crutches but didn't know how, so we spent ages trying to tie them on the back and then suddenly I looked at the mysterious bar behind the seat back that I could never figure out why it was there, and the crutches posted through and we're secure. *faceplam 'oh, that's what it's for! then the week after that was my birhtday and Mum drove us to Uffington to White Horse Hill and we had a picnic and enjoyed the last of the late summer/early autumn sun and warmth

Next on Hen's bucket list is the other place - yes, tomorrow when BK breaks up for half term we are off to Cambridge on the coach for a couple of nights in Premier Inn. I booked so far in advance I got a good deal. and on Monday we're off to Bath for the Pump House, Assembly Rooms and baths and at some point, with our combined birthday monies, we are going to go to the London Eye.

treats to stop me going crazy, as day to day, my mind is failing me more and more - twice today on the way to the laundrette and once last week in East Oxford on the way to Magic Cafe I completely did not know where I was, or even when or was, or sort of not even who I was (in time and space, I knew  who I was, just not when in my timeline or why I was in a wheelchair) it was terrifying. is this normal too for perimenopause, stress and ME/CFS brain fogginess? Because it is truly far more scary than forgetting appointment. or to phone the doctor, or where important docuuments are or what day it is... BK has the transfer from her Statement to the new system and a PIP claim to replace her DLA and I am flunking out on all of it, every time I rememeber I must phone our GP I'm out and forget when I get back (no credit on phone at mo, just free text bolt-ons). It's worryng and frustrating and scary but not as much as really not knowing where you are, as if you've just beamed in form another universe...

Talking of which I am loving Phillip Hathaway - no spoilers, but as BK predicated, it might make finishing the AU case fics and back ground bits hard, as he is pusing Joe out of my head :( And I am loving River on BBC1 (watching Lewis on plus 1!)

And I am not loving new series of DW. I hate Stephen Moffat. Doctor Who has defined me since I was about three or four, the Doctor kept me safe, I took his example, and I went through a lot of shit in the family and with school, and I didn't activily believe in God til I was 9 and have a religion of any kind til I was 15 so there was always Dcotor Who to cliing to in the abuse and bullying. If I'm not a Doctor Who fan, who am I? Sorry, exestential flu.

And the spellcheck has vanished, so apologies for that.

Finally, majordaiko thank you so much for all your lovely messages, I will reply as soon as I have spoons. Enjoy your summer sun xxx

AM xxx

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