O JOY! Getting TWO lives back


MY heart is like a singing bird
    Whose nest is in a water’d shoot;
My heart is like an apple-tree
    Whose boughs are bent with thick-set fruit

Today this Carer is blissfully happy.  Why? Today I heard for certain-sure that Ms Fitty has got her education back. More, she is going to be able to continue her education at a specialist residential college for students with epilepsy.

It’s like a dream come true.

Ms F’s future has changed overnight. Potential? This is her chance to achieve it! Independence? Ditto! Future? she’ll have one! Peer group? Check! Social life? Check! Everything she’s ever wistfully watched her friends enjoying is, at last, within her own reach.  No more sitting on the side watching. Ms F, a modern-day Pinocchio, has suddenly got the chance to become a Real Girl.

Its tear-jerkingly happy-making.

This didn’t happen by accident. After the system meltdown mentioned elsewhere, we were lucky enough to get Ms F’s old social  worker back: a wonderful, calm, kindly, smiling, unflappable woman who tweaked invisible strings and quietly restored order from the anarchy we had fallen into.

And so supported,  Ms F and I went to visit the college  – and Ms F liked the college and the college liked Ms F and offered her a place. Dependent on us getting the funding. (This, mark you, in the last week of the summer term, with 8 candidates chasing 5 places)  I persuaded Ms F’s Health, Social Care and Education representatives to meet Ms F and me round our dining room table to try and get them to understand the sheer despair of our Groundhog Days. And they did.  And then I nagged, and blagged, and wheedled, and pestered all summer and today I head that all funding commitments had been made. In writing. Technically college starts on Tuesday!

Talk about going up to the wire.

So now – as I said – Ms Fitty is suddenly  projected into a world with a future, slightly scared, excited, delighted, knuckles whited. And I,  who have  cared around the clock with so very little time off for so very long – I will suddenly become a Real Person too.

The college is  residential and there are 38 weeks of term-time a year. For the next two years I will be the kind of person who can just go out to a film, or decide to attend a class, or write a novel or if someone asks if I fancy a trip to Barcelona or a cycle across the country or even a drink in a pub, can just say yes.  And if I am ill, I can be ill with all my heart and soul and not have to get up and worry about caring for anyone but myself. Reader, I  will be just like you!

Lets face it, I’m slightly scared, excited, delighted, knuckles whited myself.


The mis-education of Ms F (and everyone like her)

Ms Fitty does a lot of domestic things at home, as I work. She cleans her room and hoovers the floors and  weeds the garden. She needs to be in my sight, you see, and it does her no good to be watching tv. When I take a break, she and I do a lot of walking out together. Young woman and middle-aged mum – poor Ms F. She should be in college, but no – they’ve said they cannot teach her. She is ‘too ill.’ (See post, Groundhog Day)

Its lucky we like each other, because Ms F  and I have spent a lot of time together, over the years. This is because she has been failed by the British education system over and over again. Thank you, Secretaries of State  Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls, Michael Gove. You couldn’t have made a greater mess if you’d intended it! Ms F has been educated in good mainstream state schools till age 19 (indeed, has continued in education till excluded last month for being  too ill – AGAIN)  but she has yet to manage more than a single GCSE pass. Art. And that was a close thing. Mr Gove would gnash his teeth.

Sorry,  that’s Michael Gove, Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls. Because you are all equally responsible.

Can I just drop my mask and weep a bit ? because for a loving mother her situation is very sad.

Imagine MsF, the brightest of my three bright children, struck suddenly down by  a condition which causes catastrophic changes in consciousness . From that moment on it’s a half-life at school: slowed down by a succession of psychotropic drugs which still fail to control the condition  -and taught largely by people who are either frightened or  ignorant of epilepsy and impatient/disbelieving/uncaring  of the problems. The state hasn’t cared that she is  clearly one of the 50% of young people with epilepsy who have achieved below their predicted capacity because of inappropriate teaching. Oh no. Schools’  failure to teach has been presented throughout as my child’s failure to learn.

In  statutory education, the troubles are of one sort. Teachers tend to feel there is little they can do. She is petted at school, but disregarded (pretty much as the state treats carers!). If she looks ‘strange’ she is sent home at once.   I keep on asking for homework to come with her – and the messages always get ‘lost’. When I complain, the school – to justify their stand – start criticising the freedom I try and give MsF. The mother as the monster. Every mother and carer of a disabled child will know what I mean.

As a result MsF and I spend term after term together, reciting Shakespeare by rote, learning about wildlife and wild fruit and wildflowers. Playing cribbage to create number bonds. Why not? Got to learn something. Yes, it’s also hard on me -a lone parent and sole carer bcause I’m trying simultaneously  to  support us all on what I can earn – but nobody offers help  so I have no option but to earn around these constraints. And succeed.

Ms F’s GCSEs are less successful: education minister after education minister has chosen not to recognise the full extent of the difficulties of a student with epilepsy

If every education minister that has ignored the exam issue had live electrodes attached to their brain for 5 mins and then was punched hard in the face without a gum-shield (causing considerable damage to lips, teeth and tongue) and then was asked to prove all their years of knowledge in an exam paper 2 hours afterwards, would they consider this to be a reasonable test of their own abilities? “(Mother of child with epilepsy)

You can’t put off a GCSE exam if you have a seizure. Ms F  gave in one english paper that was covered in vomit, she had collaped over it so many times. She failed. Again. But she wouldn’t confess herself beaten. Suck that up, Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls and Michael Gove. 

When MsF leaves statutory education the fun really starts.  No GCSEs but she still wants to get qualified! The law doesn’t oblige her to be educated – but discrimination law obliges schools and colleges not to discriminate on grounds of health. .. Hahaha

I become expert at the coded phone calls that mean ‘ by the way, we’ve decided she’s leaving us’.  Trying to resit GCSEs MsF is excluded from one school for being too ill, and is passed onto another school that specialises in learning disabilities (she hasn’t any) where they only teach Asdans. And so she loses her chance to resit the GCSE she only just failed.  Possibly the one chance to get them easily. (And, no one can explain why or what she can do with an Asdan). She’s then passed onto a college for a diploma and those GCSE resits : the diploma disappears into thin air and the college tell us (untruthfully – in terms of what they provide to others) that  they are not set up to do resits.

Undaunted MsF applies to another college, and they accept her to do a Level 1 qualification. But they find halfway through the first term of level 2  that they can no longer teach her. They have to come clean on this after all sorts of weaselly evasions  such as ‘she’s not happy’ (she’s very happy) ‘she’s not committed’ (she’s very committed) ‘she’s depressed’ (no she isn’t) have been successfully refuted.

So, now MsF sts at home, unhappy and unqualified. But still committed to learning. And I, her carer, committed to supporting her to learn.

Estelle Morris, Charles Clarke, Ruth Kelly, Alan Johnson, Ed Balls, Michael Gove: Given a young person desperate to learn, and an educational system that each of you supervised and which has never wanted to educate her,  what do you suggest MsF should do?

Groundhog day: excluded for being ‘too ill.’ Again

So on Monday  they catch me. I’m ringing up Ms Fitty’s college with my work hat on but they grab me and tell me to swop headgear sharpish. They need to see me as soon as possible.

There’s a special tone that educationalists put in their voice when they’re fixing up a meeting to divest themselves of my Ms Fitty. I’ve heard it several times before..

We’ve already seen off  ‘She’s depressed‘ – which was last month’s  salvo aimed at her continuing education.  Ms Fitty’s not depressed. She’s pretty unhappy to be 21 and still have the college ringing up mum, and to be getting iller, and to be taking medication which isn’t working as it should, and having seizures on the bus and in the bath, and still toiling over level 2 qualifications  while her friends and siblings are scattered round the world finding themselves.

“Unhappy,” as we told the college “is not the same as depressed. Unhappy is only being aware your life is not as it should be” And, far from being unhappy,  she loves being at college.  Loved.

“We really need to see you on Tuesday.”

“Its going to be difficult,” I whine.  13 years of solitary round-the-clock wakefulness and worry, of filling forms, and lifting and reviving small bodies, and bluelighting to A&E, of chasing prescriptions while earning a living by  meeting deadlines at hospital bedsides has not done a lot for my health. In the last 2 years I’ve had two chronic and incurable diseases diagnosed and I’m spending all Tuesday morning in hospital having multiple x-rays. That’s for the Crohns. To add to my difficulties the other diagnosed condition is epilepsy,  which means I can only get to the college by bicycle. Seven miles of country roads, in the dark, with a belly full of barium.  Who’d be a carer, eh?

Of course,  I do arrive,  and when I do arrive, it is to a meeting with the most senior members of the administration. Who tell us that  they can’t continue educating my Ms F. Frankly, on this occasion, I can’t really deny the problem.  Nothing remains in her head. Information oozes out like overripe Camembert. Poor poor Ms Fitty. Her sister has a law degree, her little brother is  at school in Shandong province – and she is having to leave her college because  she can’t remember how to log on to a computer. Yet Ms Fitty is a sentient intelligent 21 year old  and – although the uncontrolled nature of her epilepsy means she may need an advocate on occasion- this doesn’t mean she is not quite as clear about her current situation as anyone else.

They should be talking to her, not to me.

But they won’t. They utter consoling sweet nothings and tell her they wish the other students worked as hard as she does. And they offer deliberately unspecific hopes for the future. Reading between the big black lines it looks as if they don’t expect to be seeing her back again.

I’m not going to argue. I see their point. And when it comes to making people teach her when they don’t want to.. well my experience is,  that legislation or no legislation,  it just doesn’t happen.

So we will have to go and get her pills sorted out at the London specialist hospital. Again. And try again. Again.  Over the years I think she’s taken 18 or 19 different varieties of anti-epileptic, singly and in combinations. She has attended five separate institutions in the past 5 years. And we may now be at the end of the line for both.  O I can’t tell you how desperately I will fight for this not to be the case.

Miss Fitty is like a zombie much of the time and she hates being a zombie. And its pretty hard caring for a zombie too. We’ve seen her through five unproductive drugs changes this year in vain. But if they could manage to get it right.. If only..

Its not the despair that kills me, its the hope.

The tragedy of the family carer