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You couldn't make this up

I'm shattered. It's been a bit of a hellish three days.

Firstly, after struggling to have a day in which I had a bath, tidied up and made proper food followed by a day in which I took my daughter to her therapist I woke up Friday unable to move. now, my washng machine has died and I had to pick up my washing from the service wash people (have money to pay for service washing but not washing machine repairs - its how the local care budget goes) but too exhausted. but if I don't go then BK will have no clean school shirts for next week. what to do? Taxi, obviously, even though I can't afford one this month (ha ha, if only, as you'll see later). Pulled off pj bottoms and jeans on and hoody on top of pj top - too exhausted for anything else, including socks so pull on old red converses. Phone goes as taxi arrives.

BK has been pulled into the Year Head's office again, been told by teacher that it is about her cornrows. I had written a letter to point out a disciplinary about her coloured hair wrap was inappropriate without me or a key worker (except this year she has no key worker) and suggesting we hav the same compromise as with her 'magic' bracelets. it later turns out he hadn't even seen my letter - communcation in that school is seriously dire, and yet with 2000+ girls you wouldn think it crucial.

I get texts threatening to bunk. Threatening to bang her head and harm herself and finally to kill herself. I spend all day on the phone. i learn she is 'happy in class' - despite over a year of information that she masks her feelings out of fear and doesn't present in a normal way anyway. Also learn that she allegedly didn't antent classes another day - if she had not gone to class she would have texted me and presented in Learning Support so we have another new teacher who is appalling at register and record keeping. I also learn that she does have  key worker, she is sharing one with the girl she shares a taxi with. She de facto does not have a key worker. The other girl, cerebral palsy and epliepsy and in a wheelchair obviously needs her key worker full time and this TA has no training in or understanding of autism and autistic spectrum disorders.

BK comes home in tears because the taxi driver swore and shouting and called her and the other girl 'f-ing spoilt brats!'. Calm BK down. Speak to other girl's father. Find they have been keeping a log and e-mailing County Hall all last year. Give him my e-dress and tell him to copy me in.

I have had no rest, no food or drink and I'm still dressed over pjs unwashed. We have to go to Abingdon for Stagecoach - which is/will be aweseomely brilliant. Maths and acting, BJK's talents. Acting good, yes, because everything has to be analysed from infancy, and because she is so goo at imintating the Nts she doesn't get the support she needs.

So, off I go to Oxford City Centre and Starbucks and I get a call two hours later that she has sprained her ankle and she still can't put wait down. I explain I'm getting off bus now. We'll go to minor injuries, I decide, in a taxi, as Abingdon has wheelchair taxis, and if it needs an X-ray then we'll worry about JR A&E on a Friday night. Out hops BK from her music class with an ankle so swollen and black there is no doubt. But we're in debt and taxis are £35 but the X13 runs every 20 minutes to the JR. BK sits on my lap from medieval Guildhall (where classes are) down lane that fakes for Oxford in Lewis at times to high Street and bus. Our favourite lovely bus driver - small ray of sunshine. he keeps asking pasangers once thru city centre do they want Marsden or Northway as he wants to get us to A&E quickly buy no, alas, people want their local bus to take then home so it takes an hour. 

Bus drops at level 2 - in we go with her on my lap, henrietta the wheelchair screaming. Nice receptionist gets a chair and pushes her all the way. From then on teh JR staff pushed her and I followed. 2 hour wait the sign says proudly. Five minutes to triage - she is orange. Five minutes to X-ray. She goes down to yellow. We wait and we wait. I have no books for Bk. I go to the children's waiting area - in the normal one for injuries rather than illness and ambulance arrivals. I explain than I have a 13 year old High Functioning Autistic girl with broken leg unable to stay still without reading. I go back and forth fetching books as they only have smal childrens picture books. Finally we are called in and se the most brilliant doctor who explained everything in small sentences and answered all her questions. he even said the cast would be 4 to 6 weeks but if she heals faster it may be a little less than 4 weeks and if she takes a long time it may be more than 6 weeks. They send us to the plaster room and on goes a back slab plaster cast and then we get an appointment for the trauma unit at 9.30. We wait for over an hour before we can get a wheelchair taxi to take us home. We meet a mum of a girls in BK's new maths class (also brilliant at and loves maths, but severly dyslexic - what is this school doing this year?) who fell of her bike and had internal bleeding from her liver and was in high dependancy. Mum seemed surprising strong and cheerful after two nights in a chair next to very sick daughte. Think I would have fallen to pieces. There is always someone worse than you.

We get home at 1.30am. Mum drives over to take us back. We are second to be arrive but last to be seen. Two hours in waiting room bad enough but then we are in side ward where the cast is cut of and left alone for over an hour which keeping Bk still was a nightmare. She was given a boot. Told no weight bearing and I explained again and again about the austims, her level of undestanding, her needing visual cues, etc. I asked would you put a smuch younger child in a boot. 'We dont'' make then thatn small.' Why is that do suppose I should have asked but didn't. Okay, we got out a half past twelve and had to go over to level 3 to find somewhere open on a Saturaday to get gf/df food so BK could take her metformin. Home at 2.30. Did I say my carer phoned in sick Friday too? Well, she did. i collapsed in bed for an hour while Mum does the essentials. BK getting worse and worse.

4-8pm.Behaviours. Head banging. Walking on foot. Because it is heavy. because the nurse said she could. Because people with boots and crutches put weight down. Moaning, groaning, head banging, real stereotype stuff BK doesn't do. I phone A&E in panic. they can't talk only to tell me to come down - £80 taxi round trip. Advice to call minor injuries - this is a £46 round trip :(

I speak to the best nurse, one who understands autism in all its foms and ME too. We go down and I fall asleep in the waiting room across chairs because I just cannot go on. I burst into tears. no fussing over me, no suggestion of calling social service because 'you're obviously not coping', just an understanding of both conditions and knowledge there is sod all out there to help and referrals will just complicate and exhaust me further. BK gets new backslap plaster cast. We have to phone trauma unit and make an appointment and hopefully they will agree to new style light weight fibreglass cast for the six week duration of no weight bearing. Nurse wrote fantastic letter/notes that explain the need of visual prop and how much swelling had increased while wearing the boot.

I could be charitable and say the trauma unit staff were exhausted and BK was the last of a lot of people sqeezed into their understanffed clinic. but I'm inclined to be less than charitable and say they had already cleaned and closed the plaster room. We got back from Abingdon MIU at 10.30. It took all of 'Wild Justice' to get her to sleep.

Today, with a plastercast she has stayed in my bed with foot up on bean bag watching Barbie, Nanny McFee and Morse on her laptop. But of course, I have had a little time to myself but my room is not my own and I've been in and out like a yoyo.

I am shattered. Still to come: The school, the broken leg and the lack of support for the girl with HFA and ADHD with a Statement of Need being ignored. Dum dum dum... :(

Comments

( 3 comments — Leave a comment )
flowerpotgirl
Sep. 17th, 2012 12:53 pm (UTC)
What a nightmare.
Hope you managed to get some rest.
Are you planning to send her to school in plaster? When middle one broke her leg in Y6 she found it hard going getting around as the school had a lot of steps, but it was a small school, even for a primary.
Naughty thought - what would the school do if you attached a hair braid to the plaster?
You may know of it, but there is a brilliant website freerice.com which has lots of questions to answer in different categories and BK may enjoy it. If you get it wrong the question is repeated later so you learn and sponsors give away rice at the same time.
There is a shop online which sells covers for plasters so you can shower/ bath without getting it wet or fiddling with plastic bags. Some years ago now, but they came really quickly and were not that expensive.
It may be worth asking about hospital transport for your appointments or whether you can claim for travel costs, given that you are both incapacitated at the moment.
Nothing like your trauma, but I had an almost fall on Saturday, bending to feed cat. B had said she would do it, but cat was being loud and she had been so helpful that day......So, I managed to stop myself going headfirst into the door, but bumped my shoulder into the door jamb, you know the lovely bit with lots of sharp corners! Sore shoulder and arm, but then on Sunday chest on the opposite side started to hurt so I must have jarred that trying to stop the fall. Finally got to sleep after painkillers last night then about an hour later woken by miaowing cat. Ignored him, but ended up going to bathroom and put foot on a dead mouse! And pets are meant to be calming.
Sending both of you lots of hugs, prayers and sympathy.
asparagusmama
Sep. 20th, 2012 12:40 pm (UTC)
It gets worse by the day. When back in trauma following the problems of the weekend he said no school for at least the first two weeks if she is incapable of following/understanding instructions. And now we were back in A&E last night after she fell of her crutches :(

I have an extra £1000 from County for my care budget to pay for respite so I can sleep for two hours a day so I am still able to wash and feed myself. This is an amazing gift, like gold dust, an unheard of thing and completely the reverse of the stupidity of the Family and Child Team. This is Adult Disibilty and Elderly Team who a year ago tried to take most of my care package away on the grounds BK was now 12 and capable of doing the housework and cooking. Hah! Had to fight to get it back on the grounds of her own disibility.

ilovewales is here now, giving me a break and assessing her educational strengths and weaknesses (and watching The Avengers!) :) And my friend who was my unofficial foster daughter from when she was 16 and is a qualified child minder is going to have her two afernoons a week (she has ME too so can't do more). So some support but none that will be recognised by the TAC, or even understood, which they will not cancel.

I hope you are feeling less battered today. Think of me, I'm about to have someone from the carers centre arrive to help me with my new ESA form - finally it's my turn to moved from InCap. Next strees, the Atos medical which does not allow for fluxuating pain and fatigue :(

Why does our society hate the chronically ill and disabled so much?
flowerpotgirl
Sep. 21st, 2012 09:40 am (UTC)
The extra money sounds fantastic, but it still leaves you struggling to cope the rest of the time. I get InCap and, for now, lower rate DLA, but my ME has got progressively worse so I'm waiting to see the not-so-local ME service (covers half a county). Referred in May, nothing yet. Not sure who decided that children should be given all that responsibility and still be expected to attain their academic potential. Setting up the next generation to fail. Bet the politician's children aren't doing all the housework at 12.

Hope you managed to make the most of your break.

Dreading ESA changeover as InCap been the one thing I could rely on the past few years.
I understand that fluctuating conditions can be difficult to assess, but most people I speak to get it so why not the DWP? It's not that difficult a concept, surely?
( 3 comments — Leave a comment )

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